Today is

I am 33 years old and at the age of 17 I had a sudden onset of weight gain during my senior year of high school. I was a size 8 and graduated wearing a size 18. My weight was mainly in my face and my stomach. My legs were small so my pants would be big in the leg but I needed a large waistline. I began taking birth control & thought it was a side effect from that.

I stopped having my period completely when I went to college & doctors said it was stress & I just needed to diet & excercise. I never ate alot and was a normal active teen. over the last 15 years I have been treated for blood pressure, water retention, high cholesterol and symptoms of PCOS.

In 2003 I was sent to an endocrinologist for suspected metabollic syndrome (syndrome X) that was ruled out & after an ultrasound of my thyroid I was told I had an enlarged thyroid & was treated for hypothyroidism. I quit my job & moved to another city to return to college loosing my health insurance & so I was back at the University health center. Blood tests showed my TSH levels & malehormone levels to be fine so they would not continue to treat me for the thyroid issue. Just cholesterol & sent me to a nutritionist.

After graduating & moving to GA, I went to see a new doctor and went through my history to be told the same, my levels are normal. Because my insurance does not require a referral & knowing I had a previous diagnosis of hypothyroidism I scheduled an appointment with an endocrinologist. My firstvisit wasn't with him but with his PA in which I went over my long drawn out history. Blood work was done & upon seeing him on the second visit I was told the same, my levels are normal & I havehigh cholesterol so he treated me for that. It wasn't until I stressed to him that I had been on cholesterol medication until the previous endocrinolgist did the ultrasound and took me off of it & said the thyroid medication would take care of it that he said he would send me for an ultrasound. The ultrasound revealed small nodules, that were not there in 2003, but he says are too smallto be concerned with & he will check them in 6 months to see if they have grown, other than that I'm fine. I know this is not the case. I watch what I eat, I excercise for 2 hours 5 to 6 days a week & cannot loose any weight. I am frustrated & am noticing increases bouts of depression where I can't control my emotions one day & the next I'm fine. I am always exhausted, and after excercising I need a nap, I thought excercise was supposed to give you energy.

I was just about to give up & begin to reconcile that its just me & I'm crazy as the doctors want me to think until two weeks ago I saw an episode of TLC's Mystery Diagnosis where this woman was basically telling my story of the sudden weight gain & other symptoms & how she basically self diagnosed herself with Cushing's Syndrome & went to an endocrinologist who confirmed it & she had surgery to remove a tumor. When I heard this, I knew this had to be it, but am wondering why my endocrinologist never mentioned this disease or tested me for it. I really do not like his lack of concern and care so I called another office to schedule an appointment which I cannot get until September 1st.

After doing further research I decided I really want to see someone who is knowledgeable about Cushing's so I found the Pituitary center at Emory University hospital in Atlanta. I called today for an appointment & was asked my diagnosis. I told her I don't have one yet, I was seeking a consultation for a diagnosis of suspected Cushings. She asked who my doctor was and about MRI results. I told her I haven't had an MRI and that my doctor never did a cortisol test or any urine tests just only non fasting blood work. She told me to have my labs sent to them & that they would review them & call me to schedule an appointment. I faxed both my regular doctor & my endocrinologist a request for my records to be sent to this lady's attention. I am scared that my labs will not show anything to warrant an appointment & I don't know where to go from here.

I don't have the money or time I feel to continue to wait months for an appointment to get an accurate diagnosis.

Does anyone out there have any suggestions on what I should do?


Email Erica

Labels: bios, Erica, not yet diagnosed, PCOS

31 year old female, happily married, no children, owner/operator of at-home business (bookbinding) --- Loves reading, writing, bookbinding, camping, hiking/walking, kayaking, canoeing, photography, learning the guitar, singing, volunteer work

About 5 years ago I was diagnosed -- on a symptom & blood test basis -- with PCOS and Insulin Resistance. However, recent ultrasound results show no cysts on my ovaries; to quote my doctor “they’re pristine!” While I do believe I am Insulin Resistant, I believe PCOS is not causing my plethora of horrible symptoms...

After much research, I have found almost ALL of my symptoms point to Cushing’s. You could say I look the part, as well...large buffalo hump, and moonface, after gaining about 70 lbs. over the course of about 5-6 years (despite a restricted calorie diet, 1500mg Metformin daily, and exercise). I have never had weight problems before. I’ve led an active healthy life and have never I stored any access weight in my mid-section, upper back or face/neck ...but that all changed about 6 years ago. My body has been transformed right before my eyes, and I no longer recognize myself. I’ve been told many times by doctors and endos that I just need to lose weight and I’ll feel better; but weight loss is nearly impossible, despite following dietitians nutritional guidelines and exercising. I will lose 5 lbs. and the next week, for no apparent reason, those pounds will be back. I was prescribed the highest dose of Metformin that my doctor gives out (1500mg/daily) and although it has helped with some of my IR symptoms (acne, appetite), others serious ones persist.

I have a doctor's appointment coming up and will be asking for a battery of tests to either diagnose or rule out Cushing's. I am so frustrated and want to finally know what is going on with my body and hopefully get an idea of what can be done!

Beverly added a second version of her bio:

Hello everyone, my name is Beverly. I am so thankful to have found this board. I’m 31 years old, happily married (no children), and living on the east cost of Canada.

About 5 years ago I was diagnosed -- on a symptom basis -- with PCOS and Insulin Resistance. However, my testosterone levels are normal and recent ultrasound results show no cysts on my ovaries; to quote my doctor “they’re pristine!” While I do believe I am Insulin Resistant, I believe PCOS is not causing my plethora of horrible symptoms.

After much research, I have found almost ALL of my symptoms point to Cushing’s. You could say I look the part, as well...large buffalo hump, and moonface, after gaining about 70 lbs. over the course of about 5-6 years (despite a restricted calorie diet, 1500mg Metformin daily, and exercise). I have never had weight problems before. I’ve led an active healthy life and have never I stored any access weight in my mid-section, upper back or face/neck ...but that all changed about 6 years ago. My body has been transformed right before my eyes, and I no longer recognize myself. I’ve been told many times that I just need to lose weight and I’ll feel better; but weight loss is nearly impossible, despite following dietitians' nutritional guidelines and exercising. I will lose 5 lbs. and the next week (or next day), for no apparent reason, those pounds will be back. I was prescribed the highest does of Metformin that my doctor gives out (1500mg/daily) and although it has helped with some of my IR symptoms (acne, appetite), others serious ones persist.

My LONG list of symptoms are...

• Extremely Heavy Menses: started gradually from 5 years ago
• Extreme Menstrual Pain
• “Buffalo hump” Pronounced hump at the base of my neck. Tender and sore at times.
• Central obesity I have gained approx. 70 pounds in 6 years, gaining weight for over 9 years, notably in my abdominal area, upper back, and face area without any explainable reason (no extreme changes to activity level or diet)
• Hypertension. despite Metformin use
• Ultrasound denoted signs of Fatty Liver
• Ultrasound showed no cysts on ovaries
• Severe fatigue, weak muscles, lack of energy. “Hollow” empty feeling is how I can best describe it.
• Cystic facial acne (especially along jaw line, chest, back and pubic area) – have found that Metformin somewhat controls it.
• Roundness/puffiness of the face around cheeks/neck. Some days swelling is not as noticeable, while other days are very noticeable. Cheeks very round and unusual fullness around upper neck.
• Pink/purple stretch marks on the abdomen and upper hips/thighs and sides of breasts
• Headaches. Rarely had them before (less than a couple times per year), but have been getting them more in the past 1-2 years. At least twice a week if not more. Ibuprofen is used to manage the pain.
• Water retention and bloating so severe that I can gain 1-2 dress sizes in a day and lose it the next
• Inability to lose weight
• Elevated Triglycerides and Cholesterol
• Decreased libido.
• Increased Appetite – controlled with Metformin
• Flushing in chest area (bright red blotchy skin) even if cold
• Mood swings/Irritability. Sometimes content. Sometimes screaming and violent (throwing things). Very irritable. Easily upset. Little things set me off. Overwhelmed by the life's daily requirements. Frustrated easily. Totally against character for me.
• Occasional Blurry vision. There are times when I just can’t see clearly out of my glasses or contacts. I blink a few times, and my vision returns in 1-2 minutes. Recent eye exam indicates vision has not changed significantly.
• Bumping into things. Run into low objects, scrape door frames very regularly. Unsteady gait and balance issues.
• Stuttering. I feel like my brain is working faster than my mouth, and I stutter to get words and sentences out.
• Increased sweating – didn’t sweat much up until this year, I’m starting to notice a marked increase
• Depression, anxiety, isolation. Easily overwhelmed by change and stress.
• Locking finger – requires brace a night to keep it straight and prevent it from locking in a bent position (started 2 years ago).
• Swelling. Moderate swelling at times in my feet (ankles sometimes “disappear”)
• Uncomfortable at night with occasional hot flashes
• Frequent urge to urinate at night almost always at 4 a.m.
• Restless during sleep. Never feeling well-rested. More snoring in the past 2 years.
• More facial hair under chin and eye brows than normal. No other hirsutism noted.
• Darkening of skin between my upper thighs, arm pits, back of neck, under breasts
• Bruising easily. Slow healing. Mosquito bites, cuts, and scrapes take longer to heal and bruises last longer.
• Dry skin on arms and especially legs. Skin is extremely dry and scaly.
• Skin thin and sensitive in areas
• Thinning hair in areas (in the front)
• Rash – frequent small colorless bumps on backs of hands - no allergens known
• Chronic Diarrhea
• 'Normal' thyroid panel (taken in 2005) despite symptoms of mental and physical sluggishness, heat sensitivity, cold intolerance (hands and feet), fatigue, brittle/weak fingernails, dark circles under eyes.
• Low core body temperature
• Susceptible to Infections: I always seem to be sick. I catch whatever is going around. Weak immune system.
• Eye twitching, intermittent

I have noticed that a lot of these symptoms are casebook Cushing's. I have a doctor's appointment next week (July 23/09) and I am arming myself to the hilt with all my symptoms, my health history, and photos (as horrible as they are) to get some answers. I am almost certain that Cushing's is the culprit and will be asking for a battery of detailed tests to get to the bottom of this one way or the other.

If you've made it this far, thanks for reading. :) I have been encouraged by all your stories and successes and continuing battles against this horrible disease. I hope I will have some positive news to share soon.

Email Beverly

Labels: Beverly, bios, not yet diagnosed, PCOS

Hi my name is Christine. I am 52 yrs old and under going the first stages of the diagnosis of Cushings Syndrome

My diagnosis started back in Septmeber 2008 but unfortunatly I still don't have a final diagnosis almost a year on.

I am at my wits end with frustration and feeling really poorly right now and know were to ask questions.

I have just returned home from a 5day stay in hospital for a midnight cortisone test. I left more frustrated than ever as the tests all went so very wrong and I may have to return and start all over again.

Can you help by answering this question.....when asleep and blood is taken at midnight......do I have to be in a deep sleep state for a result. Obviously I keep waking up and my Consultant insists I must remain in deep state sleep to confirm a diagnosis.

Please can someone help.

Email Christine

Labels: bios, Christine, not yet diagnosed

I just had a tumor removed from inside the pituitary at cleveland clinic (which I highly recommend).

My drs locally had poo-pooed any endocrine problem until i insisted on further testing - not just thyroid.

Within 6 months i had gained 40 lbs, had other symptoms and was diagnosed. I feel lucky that it wasn't the years that some people have gone through, although

I am sure my steady weight gain over the past few years could be attributed to cushings. It was only this year though that other symptoms were full blown.

Be your own advocate.

Labels: bios, lmn1220, pituitary

I have had Cushing's for two years. I have been to Mayo Clinic four times in the last two years, and just recently was accepted and seen at the National Institue of Health's Rare Disease Program in Bethesda, Maryland. I am from Michigan.

I am 34 years old-a RN, BSN who had worked for ten years happily as a nurse-then I became quite ill due to my Interstitial Cystitis-my Urologist put me in the hopstial-I came out of the hospital after five days, and ten days post hospitalization I awoke with severe joint pain, pitting edema, night sweats, fever, Short of Breath, I had a seizure the next day.....I had only been 135 puonds-very active, worked out-played the clarinet in my church orchestra weekly for three services.

After this illness-I was put on steroids to decrease the joint swelling-turns out I was exposed to Legionella disease during the hospital stay and most likely contracted it after taking a shower at the hospital. My world has been turned upside down since then...I was gaining 10-12 pounds of fluid WEEKLY...finally when I went to Mayo Clinic my first visit in 11/07, they felt the Cushing's was related to the steroid's I was on-which was not a high dose, to try and decrease all the swelling-no one thought could pin point why I had so much fluid retention-this was about four months from when I first became ill and I know was 195 pounds! I returned again to Mayo 1/08 and then again 4/08....in April of 2008 it was an urgent visit-I had been passing out DAILY in my condo in Grand Rapids, MI-two hours from my family-my friends would find me-or I'd wake up fallen on the floor, etc-my internist had me come immediately to Mayo-I was set up with a leading Endocrinologist at Mayo and within 24 hours I was diagnosed with Cushing's Syndrome and Adrenal Insufficiency-my Urine Cortisol and ACTH stim test were awful. I was put on Replacement Hydrocortisone (At this point I had been off ALL steroids for five months-but continued to gain fluid-I was now 240pounds...they did a tissue biopsy-when they cut into my skin fluid came running out-they-at Mayo had NEVER seen anything like this!). After returning from Mayo-(my father took me for the ten hour drive each time, we would be there about 8 days-he was such a rock for me as I had always been the independent child in the family...now I needed help-and that was hard to accept). I forgot to mention at this point I was developing many skin rashes, my hands looked like they had been chemically burned all the way up to my elbows....I had allergy/PATCH testing done-found out I was literally allergic to almost everything in the environment-All preservatives in medicine, formaldehyde, lanoline, rubber, adhesive, all chemicals, fragerances-even toothpaste, makeup, it was unreal!

Five days after returning home-I ended up in the hospital in GR-I had a secondary cellulitis/bacterial infection with fever on my hands and arms-I was put on IV antibidics ...unfortunately the "hospitalist" I was assigned (In Michigan your internist doesn't round on you-you are assigned a hospitalist to take care of your inpatient care)...anyways-he didn't believe I needed to triple my steroid dose when ill-so he refused-I fell into a coma that day! Thankfully one of my good friends, also a RN, came to visit when all th staff was trying to awake me-and my friend said, "my God-she's in an adrenal crisis!" Once they got the Cortisol in me I was okay. But that was terrifying-I could hear everything the nurses, and medical staff was s aying and I couldn't talk, blink, move anything-I had tried to call my internist before I slipped into the coma-but I couldn't talk-I remember hearing the receptionist-but I coudln't talk-they found my cell phone on the floor where I had dropped it.

it has been a hard road-i returned to Mayo 11/08......at this point I was 300 pounds-they did a full body CT, MRI's of knee's, etc-all my tissue is full of fluid-they honestly wre not sure what to do-they just hoped that by tryijng to wean down on the steroids my body would start making aCTH and "Cortisol-I brought intormation on the Rare disease Program at the NIH-my internist at Mayo and in Grand Rapids, MI referred me-I also sent a letter with photo's. I kept a photo journal from the beginning of my journey-taking photo's of my striae, abdomen, buffalo hump, arms, legs, abdomen, and SEVERE fluid retention - I took these photo's monthly so the doctor's could see how this progressed-this was one of the most helpful things I did.

Thousands are referred to the Rare Disease Program-only 50-100 are accepted. I was accepted. My father and I flew out to the NIH May 17th and returned May 22nd. They paid for our travel, all hospital charges, and lodging for my father at the Safra Lodge there on the NIH campus.

I met the guru of Cortisol-Dr. Nieman-she was incredible. It was an amazing experience to be there-like Mayo-their philosophy is "we are here for the patient" unlike many doctor's I had run into in Grand Rapids-I'm sure many can relate to some doctor's that don't even have ten minutes for you-here and at Mayo then spend 1-2 hours with you-you are their priority. It's refreshing.

They changed my replacement steroids from Prednisone to Hydrocortisone, I've slowly been weaning-but I'm stuck at 10mg in the am, 5mg at 2pm, and 5 mg at 6pm. I also had many other consults while there.

Currently I have a WONDERFUL internist in Grand Rapids-I had to change doctors 2/08-I had been with a family practice doctor and this was just way out of his expertise, I also have a wonderful Urologist, Dr. Casamento whom has been my urologist for over ten years-he has been SO kind and helps me handle my Interstitial Cystitis.

Other than that I have transferred my care to Univ. of Michigan. I have the Chief of Endocrinology at U of M as my Endocrinologist-he is awesome-so intelligent-and he works with the NIH and my internist to help formulate a plan.

I also have a wonderful Rheumatolgosit at U of M- I have a lot of damage to my knee's-and as I said-my weight is now at 300 pounds-they say over 50% is fluid-and you can tell-my skin is SO taught, nothing is flabby....I've been on so many diuretics-nothing helps-next step is to see nephrology at U of M.

They Cushing's Syndrome symptoms are hard to deal with-you have to learn to adapt-the abdomen, the buffalo hukp, the stria-I look just like the diagram on your website-I had to cut my hair very short as I was sweating ALL the time-another bad side effect. I have had to go from being able to live in my third floor condo-to moving home to my parents-I can't do stairs anymore-I do PT exercises daily at their home-I have to use a walker at all times, I also have to sleep upright-as my abdomen is SO distended if I like even at a 45 degree angle I feel like I'm suffocating. I PRAY for a miracle-the NIH and Mayo had NEVER seen someone with such severe symptoms of Cushing's. They now are not sure if I have primary or secondary adrenal insufficiency.

In the meantime I have some major damage and arthritis in my spine/knee's ankles-but I'm not a surgical candidate per my ortho doc....he's just doesn't know how to help me.

I think the hardest things for me are just ADL's (Activities of Daily Living) shower, even using the bathroom, hygeine, etc....and still not allowing anyone to help me-I'm stubborn that way-but the worse the abdomen distends, the worse the fluid gets-the harder it is for me.

Thankfully I have so much loving support from family and friends-but qualify of life is so low. I no longer get out of the home-it's too hard-and the stares I get from people, and the laughs because of the Cushing's is hard....I had been getting my groceries using an Amgio cart-but now that I'm living with my parents they take care of that.

Thankfully I had no problem getting disability-but COBRA and my medical bills have taken my entire savings. My church family even pays every other COBRA-but at 540.00 a month-plus all my other bills/mortgage, etc-it's been a devestation financially.

I wish everyone with Cushing's the best of luck-just know you are NOT alone. My faith has sustained me in hard times-I can't imagine not having faith to get throgh this.

Labels: bios, Brenda1, steroids

I am 38 and had three transphenoidal surgeries for Cushing's.

I had a CSF leak with the 2nd and when they went in to repair it and look for more tumor my remaining pituitary gland was necrotic and I lost the whole gland.

That did not cure my Cushing's so I went on to have a laproscopic adrenalectomy followed quickly by galbladderproblems and appendicitis. Dr. Ludlan, Deleshaw and Sheppard at OHSU worked with me. I had my pituitary surgeries in 03 and my adrenals and other 2 surgeries in 04.

I have not been able to return to work as a nurse and feel thie surgeries have greatly reduced my quality of life. I would love tro talk with other people.

I have two adopted kids from China as a single mom who are 12 and 13.

I know have problems with fibromyalgia and arthritis.

Email Mary

Labels: bios, fibromyalgia, Mary, pituitary, steroids

Two months before my 31st birthday, I was diagnosed with diabetes. I was really shocked considering no other family member (maternal or paternal) had this disease.

Well, as the months followed, so did other diseases such as high blood pressure, high cholesterol, etc. Each diagnosis brought more shock because I felt great and could keep up with any 20 year old out there. Within the next two years I had gain 70 pounds and looked like an apple with popsicle sticks for legs. I also seemed to have more symptoms which seemed to be dismissed by the doctors because it was also a symptom of one of my other diseases.

In the past 8 1/2 years, I've had 3 doctors, 3 endocrinologists, a hemotologist, a nuerologist, and 2 cardiologists that just keep attaching my symptoms to one of the labels that has already been given to me. Now, at the age of 40, I feel like I have the body of an 80 y/o. I can hardly walk because of the clots in my legs (have 2 stints), can't stand for long and bending just kills my back because of the crack in my L5 S1 vertebrae, and among other things, can't seem to do anything because of the extreme fatigue I have. I have no doubt that I have diabetes, high blood pressure, high cholesterol, clotting problems with my arteries, and everything else they want to label me with, but it seems to me that after only 8 1/2 years, my health shouldn't have gone down hill so fast. I also take 16 pills a day because each doctor wants to give me a medication for each symptom.

For a few years, I've been searching the internet for an answer. I would spend hours and seem to hit a brick wall each time. Still, I wasn't going to give up. No one gets so sick that quickly from any of the diseases I've been diagnosed with. Just the other day, I was watching Mystery Diagnosis. I don't even remember what it was about, but it did prompt me to start my internet search again. I did something different this time. I didn't research all of my "diseases". I simply typed in the search field: "Do any diseases mimic diabetes". Guess what popped up all over my screen. Yep, Cushing's Disease. I went to article after article and website after website. I was amazed to find that many of my symptoms were linked to Cushing's Disease. I couldn't believe what I was reading. My "diseases" could actually be a symptom of a bigger disease which would explain a lot to me. Now I have another endo which I've made an appointment with (a month away, yuk) and I'm going to ask to be tested specifically for Cushing's Disease.

Below I'll list my symptoms.

Round "Moon" Face, Fat Lump on Back of Neck, Low Potassium, High Cholesterol, High Blood Pressure, High Blood Sugar, Glucose Intolerance, Insulin Resistant, Muscle Weakness, Fatigue, Anxiety, Irritability, Depression, Decreased Fertility, Decreased Libido, Acne-like Rash, Backaches, Excess Facial or Chin Hair, Slow Healing Cuts or Scratches, Large Abdomen, Insomnia, Irregular Periods, Edema, Scalp Hair Loss, Excess Sweating, Memory Problems, Dizziness, Low Growth Hormone.

I also have a chronically high platelet and white blood cell count. The Hematologist couldn't even figure it out (Yes, cancer has been ruled out with a bone marrow biopsy). I'm not sure if that has anything to do with Cushing's or not, but unfortunately I have that as well.

Sometimes we tend to forget that many doctors only spend 7-10 minutes a visit speaking with us and forget about us about 7-10 minutes after leaving the room, and they certainly don't lay awake at night thinking of us. It is much easier for them to treat a symptom that has already been issued a label rather than find a bigger cause for it, so we sometimes have to take matters into our own hands and help ourselves.

I'm thankful to have found this sight. If I find out that I do not have Cushing's, I will continue my search, but it is nice to know that I will find an answer someday.


Email Shon

Labels: bios, diabetes, not yet diagnosed, Shon

Diagnosed with Cushing's last March (at 39) after years of illness, weight gain, depression, etc.

Had surgery August 2008 to removed pituitary tumour. Off all meds but still tired and sore.

Still seeing consultant.

Email Shirley

Labels: bios, pituitary, Shirley2

Over the course of roughly a year in my early teens, I gained over 50 lbs., started noticing excess hair growth, and began having acne so severe that I was subjected to three full courses of a drug known as Accutane. Nothing had changed in way of my lifestyle or diet, and here I was all of a sudden with health issues presenting at the age of 13.

My dermatologist one day mentioned that my symptoms might be supportive of this rare disorder known as Cushing's and suggested I see an endocrinologist. I made my appointment, and the doctor ordered the standard battery of tests, including a 24 hr urine collection.

On that first appointment, she told me that my symptoms lined up very well with Cushing's, so they were going to test for it, but told me that day that it was something I didn't want to have as it usually involved having a brain tumor - but not to worry, it was extremely rare and it was very unlikely I would have it.

The tests came back and while my cortisol level was apparently at the high end of normal, she decreed that none of the tests showed anything of use, and that I should feel relieved that it all must just be normal teenage hormonal changes and that I should just focus on losing some weight. She'd scared me with this brain tumor talk, so I was happy to have this clean bill of health and moved on.

The weight gain persisted over the next few years, while the excess hair growth got worse and my periods all but stopped coming. I eventually found myself in endo #2s office. The first thing he mentioned after examining me is that my symptoms were increasingly in line with Cushing's, but since it had already been tested for, he didn't think it worthwhile to repeat the test.

After the battery of tests he did came back quite normal, he determined I must have PCOS, and began me on Actos. I continued on this for a few years as my symptoms became progressively worse. After a while of seeing no real benefit to this treatment, I eventually stopped.

Flash forward a few years and upon my mother's insistance, I find myself at endo #3s office at a major university. This gentleman asked all the same sorts of questions, and again the first thing he mentions is the possibility of Cushing's. I immediately go back to that day when I was 13, and let him know that it had been checked previously, so he too declines to test again. The other tests are mostly normal, though now it seems my blood sugar is slightly elevated, though just enough to barely be considered pre-diabetic.

He starts me on Metformin and asks me to participate in an intensive medical study for the effects of Metformin on PCOS patients. I agree, and after months of taking the drug, I'm told by the resident who acted as my liaison that it's odd because my symptoms are so dead on for PCOS, but there are no cysts at all, and my body doesn't seem to respond much at all to the Metformin. I stop taking the drug after this.

Symptoms continue to worsen, and in attempts at help in weight loss (which has become a very serious issue by my early 20s), I see endo #4. The appointment was like deja vu - exam, immediate mention of Cushing's, see I'd been tested for it previously (though it was 10 yrs ago at this point), then ran the normal endocrine workup and got the same results. Verdict: PCOS - begin taking Metformin again and low carb diet. So I did, and even after sticking to a 2000-2500 cal/day diet for almost a year plus taking the metformin, I only managed to lose 11 lbs from the 332 lbs that I weighed when I began this diet.

Frustrated, I - upon prompting from my PCP at the time (approximately a year later) - go see endo #5, but unfortunately found myself having the very same conversations, tests, and conclusions. I agreed to up my Metformin to the maximum dose and begin an intensive medically supervised diet through a company called HMR. I stayed with this very rigorous and expensive diet plan of 1200-1500 cal/day plus at least 30 mins of walking each day for around six months, managing to lose 47 lbs of the 350 I started with, but eventually had to step away from it because of the enormous expense involved and my inability to continue paying for it as a full time college student.

College was a busy time, and as time progressed, I found myself gaining back all the weight plus a few pounds and feeling progressively worse as the years went by. I began getting frequent skin infections - having to be hospitalized twice for cellulitis in my legs. I've had several bone fractures from what are normally very benign sorts of occurrences - each of my fingers have been broken at least once as have several of my toes, and I broke my foot twice, both from very simple falls. The excess hair growth got to be completely out of control, with the current need being shaving most of my face twice a day and plucking in numerous other spots. My blood pressure has come up to prehypertenion levels. My knees have begun causing issues and are quite weak. I've also been having fairly intense back pain, diagnosed as degenerative disc disease. My periods have all but stopped coming, having maybe 5 or 6 over the past 10 yrs total.

In the past year, I've begun having anxiety issues for the first time in my life that I’m now taking a low dose of Citalopram to control. I'm so weak and tired all the time it's a fight to even get out of bed most days. Recently I've begun being having serious bouts of weakness/dizziness that generally sync up with terribly awful headaches. I can barely even make it to work most of the time. In trying to do a bit of self diagnostic research after being tested for virtually everything over the years and doctors repetitively telling me that I just need to work on losing weight, I came back across the familiar word of Cushing's. I've always been afraid of it since that day when I was 13 and have never looked heavily into it consequently, but here I am reading the symptoms, seeing the pictures, reading all the stories, and all I can think is "oh my god, this is me". All the symptoms I've previously mentioned combined with the "moon face", the abdominal obesity with relatively slim legs and arms, and the "buffalo hump"…. Finally something that makes sense after 15 yrs of searching!

After doing my research last month, I call and schedule an appt with endo #3, who is now the head of the endo dept at a large university. I go in armed with information, and ready to have a serious discussion on the possibility of me having this disease. The first doctor with whom I spoke listened very patiently to my story and all of my symptoms, and agreed that it was worthwhile to test for Cushing's again along with a repeat of the normal battery of endocrine tests.

The main doctor comes in a few minutes later, asks me a few questions, and then says "well I can tell you that you don't have Cushing's because I would have found it 10 yrs ago when you were here if you did. But we'll go ahead and test to be sure." He orders a 24 urine collection and a low dose dex suppression test along with a 8am cortisol blood draw, and while I'm confused why he immediately tells me that I don't have it when I have had no testing for it short of one urine collection that was on the high side of normal 15 yrs ago, the testing that was ordered satisfied me enough that I didn't push when he said he didn't like the salivary cortisol tests, and didn't see the use in the midnight blood draws. I was very hopeful for weeks, and finally I receive a letter saying that everything was completely normal short of just slightly elevated testosterone and stated that I most definitely did not have Cushing's.

The only suggestions given were to up my Metformin back up to the max dosage and get in touch with a weight loss surgery specialist. In reading these forums, it really doesn't seem wise to stop at this point, so I call and ask if they'd agree to repeat at least the urine collection. I was told that there is no use, and that they could do no more besides get me in touch with someone regarding gastric bypass. I go to my PCP a few week's ago with the results and asked if he'd agree to order a few more urine collections if nothing else, and he point blank told me that if a specialist at a major university says I don't have it, I don't have it, and he won't assist in doing any more investigation.

I tried calling around to several endo's in my area after that with a shortened version of my story with the request to just have some more testing run, and no one will agree. I've started wondering if I'm crazy, but the stories on these boards let me know that I'm only one of very many with the same sort of back story, and that there aren't easy answers when it comes to this disease. It seems obvious that I need to have more testing done, but I'm completely at a loss as to what my next step should be all things considered.

My job provides great insurance and I’m willing to travel if there’s some real prospect of help elsewhere… but I have no idea who to call or where to go at this point!

Can anyone help point me in the right direction????

(MaryO note: Although Amber asks several questions, she didn't give permission for a link to her email address to be added to her bio)

Labels: AmberP, bios, not yet diagnosed, PCOS

I was diagnosed with cushings in november 2008 and just had my pituitary tumor removed on June 3rd 2009.

I am on steriods right now and doing okay. Im trying to lower the dose and it is causes me to feel so sick. My endo is great and basically knew what I had on ,y first visit to see him.

After testing he confirmed cushings and has been great the whole process...

i hope things go back to normal soon

Email Dina

Labels: bios, Dina2, pituitary

I've fought weight since I got out of high school but was pretty healthy otherwise. BP was normal and I had no problems keeping up with my friends even when I hit 350 lbs.

After years of failing at diets, and months of research, I decided to have gastric bypass surgery. I had the GBP in Dec 2006, lost 125 pounds in the first 8 months and then plateaued and 225. I admit, I had gotten lazy and wasn't really trying to lose or following the GBP "rules".

A little over a year later (Mar 2008), I developed insomnia. I just woke up between 4 and 4:30 am and I was going to bed around 12:30-1am. If I went to bed earlier, I just woke up earlier. Over the past year, 4 hours of sleep is about the norm. Next came crazy sugar cravings. Those are bad because too much sugar makes me horribly ill (GBP). I developed hand tremors and was sent to neurology who evaluated me for Parkinsons or something similar. They ruled out anything like that and said it was an "essential tremor" that some people get so I just deal with that. My edema was horrible some days. My ankles would be 3 inches larger around than normal. My hair started falling out. This was the second round. The first was about 5 months post surgery when I lost about 1/4 of my hair (common after GBP surgery). I just attributed this second round to some recent nutritional issue related to the surgery. I started bruising easier, my periods (which had been infrequent) went away totally, and my memory, concentration, and coordination went into the toilet.

My symptoms popped up one at a time so my PCP treated them individually. At this point, I was taking metformin for hyperinsulinemia (3 years+), lasix, prilosec (from the GBP), and wellbutrin. I had asked for something to help with the agitation I felt constantly, which was manifesting itself in road rage and it essentially blunts all emotions for me. He attributed most of the symptoms to the insomnia (memory, concentration, coordination, tremors), which wasn't unrealistic because they were worse on days where I only got 2.5-3.5 hours of sleep. He couldn't find a medical reason (at the time) for the insomnia, so he sent me to a shrink. All he asked was if I was under a lot of stress and if I had thoughts of killing myself. He had such a horrible "bedside manor" that I wanted to after 10 minutes with him.

In November, my thyroid tested low and I was put on Armour thyroid hormone. It didn't do anything for me. I suddenly lost almost all strength in my left thigh. If I was carrying anything at all, I had to take stairs by going up with my right leg and bringing my left up to meet it. It would give out if I put weight on it while bending at the knee. This was hard to deal with because I had been able to carry at least 50 pounds up the stairs when I was at my heaviest. My weight was still steady at 225, even over the holidays when I ate too much junk. I started having double vision and had an MRI to look for a brain tumor. It was clean. I started having high bp readings. Typical was 130/85 but it was 160/110 one day at the doctors. My T3, T4, and TSH were all low. The PCP said that they all should be normal (from the Armour thyroid med), but if T3 and T4 were low, then the TSH should have been high, which it wasn't. I had started eating healthy and following my GBP rules. My caloric intake was about 800-900 calories per day, max. After a couple of months, I started gaining weight. From Mar to mid May, I had gained 45 pounds. I went to my varicose vein doctor and my edema was so bad she wouldn't do the treatment. She made me promise to see a doctor immediately. Mine was booked but I got in to see his wife and I had gained 15 pounds in the past 2 weeks! I can't eat enough food to explain that and it alarmed her. I had been keeping a record of my symptoms and I showed it to her so she would have some context for evaluating the edema instead of just giving me a pill. She saw I wasn't menstruating and saw that my hormones were normal indicating I wasn't menopausal (I'm not quite yet 40 yrs old). She immediately said that needed to be addressed. Maybe it was a red flag to her being female but my PCP had never brought it up with me. She read over the list and said that I probably had a pituitary problem.

She scheduled for another MRI and an appointment with an endo following that. The endo said the MRI showed a small tumor. She had tested me 3 years earlier for hypocortisolism and it had been negative but she had me do another. I saw a neurosurgeon who got my results and said the cortisol level was "quite high". He ordered a second 24 hour urine test for verification and a dexamethasone suppression test. The dexamethasone test showed that the morning level was very high which indicates (I believe) that the cortisol overproduction is caused by a tumor and not the adrenals. The other results should be in today (June 29) and he will decide to operate based on that.

I guess I'm lucky if you want to call it that. If the cortisol test 3 years ago was really normal, I've had Cushing's for between about 2-3 years. I've had some problems longer than that, but I've read a lot of posts where people had symptoms but tested negative. In any case, I haven't had to fight anyone about this. Sure my PCP was slow and ultimately wasn't the one who diagnosed it, but he was trying. He said he had never had a patient with Cushing's so it had never even crossed his mind. I think that if he had seen everything at once with fresh eyes, he might at least thought pituitary since it controls so many things.

I am so eager to get this taken care of. I am sure this all sounds familiar. I constantly feel on edge, I can't relax, my double vision (which may be unrelated) is very bad. It causes vertigo and horrible headaches. I don't know how common the bone weakening is but I am already at risk because of poor calcium absorption from the GBP. I am afraid that between being clutzy, the double vision and the leg weakness, I'll fall and break something. My bp is borderline high. My blood sugar has dropped below 20 a few times and I thought I was going to pass out. I read that cushings can cause susceptibility to fungal infections, "unusual" infections, and "opportunistic" infections, such as pneumonia. My boss had pneumonia so I avoided him as much as I could. A small dark patch on my shoulder had been diagnosed as a fungus related to ringworm before I had heard of cushings. Then last week, I developed painful knots in my arm and it all turned red. It was cellulitis. The doctor said if the antibiotics didn't make it better by the next day that I needed to go to the ER and get on IV antibiotics. Luckily, it got better. I had an EMG, which showed some nerve damage in my left leg but not enough to cause the weakness. That doctor said Cushing's could cause it but it was unusual for it to occur only on one side. We'll see if it goes away after surgery.

I've been pushing through all of this as best as I can and have been carrying on like normal, albeit slower, weaker, in constant pain, and with poor memory. It hasn't gotten debilitating like with some people so I consider myself lucky. It seems like a lot of the symptoms are just seen by people as "annoyances" or worse, in my head. At least the edema and bp of 160/110 were serious enough to get attention. I have a great job in a research lab with extreme flexibility but I was still concerned that my coworkers and boss might think that I've been a whiny baby and was just making stuff up. You can't prove you have double vision or how fatigued and horrible you feel. Then again, I had a friend/coworker say that I must be feeling better one day because "the dark circles under my eyes weren't quite as dark as usual". HaHa!! Now I feel vindicated because you can't fake brain surgery :-) After reading so many stories, I am thankful that I got doctors that are very open to considering all possible causes of the symptoms. Even though it took a while, at least I wasn't getting the runaround and my PCP was addressing things to the best of his ability. My neurosurgeon is at the University of Michigan and only does pituitary operations (2000+). The endo he is consulting with (not the original), has a special interest in Cushing's. I guess I am also lucky to be in good hands. The neurosurgeon has been emailing me to keep me up to date on test results. I just hope everything goes as planned and I get this removed in the next couple of weeks.

Email Angela

Labels: Angela, bios, gastric bypass, pituitary

I have not been diagnosed yet. As a matter of fact my 24 hour cortisol test came back "within the normal range".

But I am convinced after reading all the symptoms as well as other's experiences, that I DO have Cushing's. I think I may have had it for the past 10 years. I can remember going to my doctor at first complaining and thinking that maybe I had a possible immune disorder because I was so exhausted and would literally get sick (bronchitis, flu like symptoms etc..) after beginning a new exercise regimen. of course he would tell me it was a coincidence but yet it kept happening EVERY time for years and years.

Now mind you, I used to be a competitive figure skater, taught skating, was always very thin (size 2-4) and ate healthy. I'm not saying I never ate pizza or a brownie or anything like that, but I love vegetables and can count the number of times I’ve eaten fast food (BK, McDonalds etc..) in the past 10 years on 1 hand. Yet I started gaining weight....first it was 10 lbs, then held, then it was 20, and held...then the next thing you knew it was 30 more lbs POW! in like 3 months!

I am at this moment in time 90 lbs heavier than I was when I got married 13 years ago and it is still creeping up! I was always very shapely, even when I was thin, had the hourglass figure with a very thin waist. Now I look like I'm 9 months pregnant!

My hair is thinning (but the doctor doesn't think so because my hair is still thicker than most) I have acne problems even though I NEVER had them as a teenager??? I have a moon face, hump on my back, purple (not to dark, but still gross!) stretch marks, diarrhea alternated by horrible constipation, migraines, bloated, bruising, lots of pain..oh and did I mention the constant sinus and repertory infections?

There are days when I just hurt everywhere! Also, depression, anxiety..I could go on and on. Let me make this clear, I DON'T WANT TO BE SICK! But the fact of the matter is that I am. I am not crazy, it is not all in my head, I am not lazy and just eating too much. I do not choose to be so exhausted that I have a hard time keeping my eyes open when driving to work or to even lift my arms to wash my hair.

Something is wrong with me!!! I think the big problem is that sometimes I feel ok, my energy comes back for a little while, I don't feel as bloated, the weight gain seems to slow down or stop and for a short time I almost feel "normal". This is how I felt when I did the 24 urine test, could that be why it came back as within normal levels? My PCP ordered the test and I have an appointment with an endocronologist on 7/29. I don't think I can handle another doctor telling me nothing is wrong with me.

Email Melissa

Labels: bios, Melissa3, not yet diagnosed

Hi, my name is Aly and I am a 26 year old from NY.

I have been dealing with cushing's for the past 4 years. Like most suffering from cushing's, I went to a handful of different doctors who ordered test after test to try and get a definitive diagnosis.

I would hear the same line over and over again from the doctors I would see “I think you have Cushing’s but I would like you to see another doctor to confirm findings.” I have seen at least 10 different doctors during this nightmare. Might I add that during my treatment/diagnosis process, 3 of the doctors left & moved away from the practices where I was seeing them. So I was forced to start over with new doctors and go back to square one.

Within the past month I have found amazing doctor’s at Mt. Sinai Medical Center in NYC and within a few weeks of my initial consult I was scheduled (and completed) Petrosal Sinus Sampling. Those results just came back and showed to have positive findings so the doctor now feels we are good to go for surgery. When I heard the words that the doctor was ready to do surgery

I felt like the weight of the world was lifted off my shoulders. A glimmer of hope is now in my future. We are hoping to plan the surgery as soon as possible.

For anyone who feels like there is no hope or that the road is never ending, keep going and fighting and you will make it to the end of the rainbow.

Email Aly

Labels: Aly2, bios, pituitary

I suspect that I have Cushing's syndrome. Rapid weight gain, hump on back, new pruple stretch marks everywhere, very depressed and unable to enjoy life anymore.

My cortisol level is elevated and I am undergoing more tests this week.

How high does the dortisol level have to be in order to ahve Cusing's syndrome?


(MaryO note: Although Katie asks several questions, she didn't give permission for a link to her email address to be added to her bio)

Labels: bios, Katie, not yet diagnosed

Years and years of no answers and thinking I was losing my mind may be coming to an end. It looks like Cushing's.

I'll know for sure in about 2 weeks but my Endo is pretty certain. Round face, 40 lb FAST weight gain, bruising, muscle tiredness, middle body weight, it's all there. While my Dr. had suspected this for a while the first testing seemed inconclusive, no major abnormalities. Fortunately for me after the weight gain my Endo decided to run the salivary cortisol and urine testing again. This time the results were not inconclusive, my cortisol levels were through the roof. No matter how long I had known this was an option the actuality of this diagnosis has thrown me. It doesn't look like it's a "could be" prognosis anymore but likely this is "it"

We'd talked about the possibility of Cushing's but now we are talking treatment options. I thought I was prepared but now I find I am really having a hard time wrapping my mind around this. I'm really happy there is a community out here for support. How do you do this on your own?

My family is freaking out about this and think the (2) options for treatment that I've been given are extreme. They want to pursue natural health resources. I want to move forward with life. For years there has been a "mystery" around my health and I think this is the answer. Did anyone else ever feel like they were losing their mind? I'm guessing I'm not the only one who would welcome a concrete answer. Thanks for showing me this is doable. When I'm "official" I'll let you know.

Labels: Beth, bios, not yet diagnosed

I had a tumor spotted on my MRI by Dr. Ludlam after a year of doctors telling me I had every other kind of problem you can think of.

After a year and a half of testing, Dr. Mayberg removed the tumor. I was getting better, but progress stalled at about a year after surgery. 18 months after surgery all of my pre-surgery symptoms suddenly re-appeared and are rapidly getting worse.

A new MRI doesn't show anything. More testing ahead.

I am not happy about any of it.

Email Robert

Labels: bios, pituitary, Robert

Hi I am new here, but have a few questions.

I had cushings for about 4 years before they found out what was wrong with me, I actually was the one that found out, my hubby and I were watching Mystery Diagonis on TLC a woman with the same symptoms...

I told my dr and they did all the tests..long story short, they found out I had a tumor on my Right Adrenal gland, and had to have major surgery with a very long recovery, It will be a year this August 8th...

I was about 205 at surgery and now am 116 so I did pretty well. I am going to be 35 this august....

I have just found out I am pregnant and am very nervous. I have 4 children already am am worried about this pregency..I was wondering if anyone has gone through this and am looking for any advice..

thank you
leah


(MaryO note: Although Leah asks several questions, she didn't give permission for a link to her email address to be added to her bio)

Labels: adrenal, bios, diabetes, Leah

My story starts about 7 years ago.

I had moved back to Kansas City from San Diego. I was 5'3 and about 145-150 lbs a little overweight but I still looked good. I remember I had a very small waist and carried my weight in my butt and thighs. One day I woke up and realized I had gained about 50 lbs that was about 6 months after I returned to KC. I also found it hard to get up everyday and function. I started getting depressed. I had no idea what was happening. Luckily I was in the health care field.

I had approached my friend who was an ER doctor and asked her to help me. She was happy to try and help so after a little research she told me she thought I had cushing disease. I had central obesity and developed the round face.

So we did a CT scan and had one of the residents read it who said my left Adrenal Gland was enlarged that was 4 years ago. Well when the report was dictated by the staff radiologist he didnt mention a thing about my adrenal gland. I tried to tell this to many doctors but no one would listen. Everyone had the same advice stop eating unhealthy and start excercising.

Well I am now 42 and 2 years ago I was diagnosed with severe heart disease I have 2 stents and I ended up in January with Congestive Heart Failure. There is no heart disease in my family so it doesnt make much sense.

Well I had abdominal pain the other day and went to the ER at work. Had a CT done and what do you know this time it read that my left adrenal gland was nodular it said that it was unchanged from the last CT. Well it was never even reported on the last CT.

So I am now trying to find a new ENDO that will listen and run test on me. I have the CT scan so enough of the run around. I hope something good comes out of this.

Labels: adrenal, bios, KimK

Hi, I've been trying for 2 1/2 years to get a good diagnosis so that I may start treatment for what my Dr's are currently calling probable cyclical cushing's disease.

I actually think my symptoms started about two years after I had my son (he was born in 2000). I first started gaining weight, had several stress fractures in my feet, and had severe headaches. Up until 2007, I had gained about 30 lbs ( I had lost all my "baby weight"). I had hypertension really since before I was pregnant with my son, but it was mild and was not treated until I was pregnant. It was controlled for years after with one medicine and I had been able to get off the medicine with diet and exercise.

Then starting in early 2007, I developed severe edema, uncontrolled hypertension up to 198/111, and I was feeling anxious and felt like I was going to die. I was treated with a combination of different medications all for my blood pressure.

Initially, they did a 24 h cortisol test for and it was normal, so it was dismissed as a cause. They tested me many times for a pheo, renal artery stenosis, etc. All the wile my symptoms kept getting worse. I had flushing, sweating, osteopenia, rib fractures with no trauma.

Then starting last summer 6/08 I started rapidly gaining weight and have gained 100 pounds since last summer. I eat a very healthy diet, and did exercise all the time. I was on a cycling team with my work and was riding about 70 miles a week. I had to stop that last spring because I was so short of breath and gould not keep up with my team. I now have stretch marks on my abdomen, hips and under my arms. I have gained most of my weight in the abdomen and neck and chest. I have the "buffalo hump" and still have edema despite being on 3 different diuretics 2x per day along with other blood pressure medications. My muscles feel so weak, it's hard to get up and down the stairs I have double vision and do have a pituitary microadenoma documented on dynamic MRI.

I went to the Mayo clinic last fall and was seen by one Endocrinologist who was sure I had Cushing's. He felt that since my cortisol levels were not high enough that I may have Cyclical Cushing's. He recently has spoken to my Family Dr who is trying to help me. The two local endocrinologists have been a disappointment to me. They seem to know much more about Diabetes and Thyroid.

According to the new Guidelines for Diagnosing Cushing's(NIH), my Dex Supp test is positive, but the endo Dr does not want to go by the new guideline since it is only 1 1/2 years old. She wants to retest me in August and also repeat my MRI to see if the pituitary adenoma has grown.

Until then, I have to keep waiting and trying to deal with the increasing symptoms. My Fam Dr may help me do some mpre testing in between to be more aggressive. I am trying to learn all I can so that I can help my Dr's so they can help get me well!

Labels: Anita, bios, pituitary

30 yof who was dx in April of 2009 with Congestive Heart Failure (CHF), one week later Diabetes, and one week later Cushings.

Doc says CHF and diabetes are secondary to Cushings and should go away after sx. Had numerous tests done to locate the tumor with no avail.

Took going to NIH to locate the tumor which is 7 mm and on my pituitary.

Surgery is scheduled for 7-29-09. Suggested to my doctor a few years ago that I had cushings...the weight gain, lack of a monthly cycle, infertility ( they told me I had PCOS after already having a child), etc.

They told me I had been reading too many books and that I did not have Cushings, it was too rare. I would love to see that doctor again after sx with all my records and tell her what a big mistake!!

Never assume anything just because it is "rare". Can't wait to get my life back. The last few years have been awful!

Email Michelle

Labels: bios, diabetes, Michelle4, NIH, PCOS, pituitary

There is a Program on the Discovery Health Network called “Mystery Diagnosis”.

Of the many Conditions featured one thing stands out to me - diagnosis of the various mystery ailments and diseases is often lengthy [ years pass by] – complicated by many variables and extremely frustrating to the patients and their families. What a relief it is for a patient to finally get an accurate diagnosis especially when the patient has been told for years that their complaints may be all in their heads or of their own making. So it has been for me – so many of my symptoms have mimicked other conditions each of them being addressed individually and not really considered to be a result of a bigger or larger problem.

After my right Thyroid gland and the mass on it was removed in the 1980’s I developed weight, cholesterol, blood pressure and energy issues. I found that exercise and diet would not and could not control my weight gain. I was active and watched what I ate but I packed on the pounds and the inches. I considered myself fit but fat. In 1998 when I quit smoking I developed type II Diabetes and put on an additional 50 pounds catapulting me into the morbidly obese category. By the turn of the Century I weighed 209 pounds on a 5’ tall frame [I am now a grand 4’10” tall], My Diabetes was poorly controlled and my body was deformed by the fat. I was a candidate for a heart attack or a stroke and I battled with depression and frustration.

I joined an internet Diabetes support group to learn about how to deal with the Diabetes and purposed to focus on improving my health. One day a group member bid the group fairwell because she had had Gastric Bypass surgery and she was no longer a diabetic. This surprised me as I had been told there was no cure for Diabetes and here she was claiming a cure. Being a natural research nut I immediately began to research the surgery and found that not only does it CURE DM II it also cures a host of other medical issues such as Asthma [to which I was prone], fatty liver, high cholesterol, and high blood pressure. All things I was living with. I found an excellent Bariatric surgeon and on October 1st 2002 he performed a form of gastric bypass surgery called a Biliary Pancreatic Diversion with Duodenal Diversion or BPD/ DS for short that allowed me to retain a functioning but smaller stomach and I was soon on the road to a smaller healthier me. My Diabetes disappeared, and I no longer had any of my former problems with the exception of the high blood pressure that remained an issue. All the medications I had been on were now discontinued but the blood pressure meds were still needed.

By 2006 I reached a weight level that was perfect for me. I went from a size 26 or 3X to a slim 8/10 and I felt and looked better than I had for many years. Life was good and God had given me a second chance to live a healthy life and enjoy His creation. In 2006 I had an incisional hernia repair and in the aftermath of that surgery I entered into a period of unusual symptoms of bloating and weight gain. Unusual because I never changed my eating habits and I seemed to be returning to that fit but fat condition. My surgeon who monitored my post op condition every 6 months ran a battery of tests and sent me for a CT scan. That test revealed that I had a mass on my right adrenal gland. He sent me to see an Endocrinologist who initially decided to watch and see what developed. Over the past year we watched and discovered that the mass, aka an adrenal adenoma had grown, and my symptoms were increasing as was my weight and size.

On Tuesday June 16th 2009 I was officially diagnosed as having CUSHINGS SYNDROME. A rare condition with less than 5 people out of a million being diagnosed with it. Cushings caused by Adrenal Adenomas are ever rarer since the majority of Cushings Patients suffer from Pituitary tumors. I am now scheduled to see an excellent Laprascopic Surgeon at the Lehigh Valley Hospital and God willing he will be able to remove the damaged adrenal gland with tumor and I should be well on the road to a reversal of symptoms and a return to good health by the time our expected grand baby arrives in late August.

The Endocrinologist explained to Hank and I that this tumor has caused my right adrenal gland to pump high levels of cortisol into my system effectively shutting down the pituitary gland and wreaking havoc on my body. Once the tumor and gland are removed the Pituitary needs to “wake up” and resume control of my hormone output and encourage my remaining adrenal gland to take over the cortisol regulation. In the meantime I will be on artificial hormones or steroids. It can take from 6 months to a year for things to return to normal.

That is my story so far but I am extremely happy to know what has been happening to me and to know that this is reversible.

Email Patricia

Labels: adrenal, bios, diabetes, Patricia

I think this answers the question of my health concerns of the past 27 years. I am just getting started on my quest.

Labels: bios, Elaine3, not yet diagnosed

If anyone has knowledge of how long it takes to feel better after BLA, please advise. I've had unusually difficult setbacks since surgery. This web site has helped a lot so far..

I have had high blood pressure that has become harder to control for 11 years. Ultra sound did not show anything. Many other symptoms increased over the years, including diabetes, body shape, hump etc.

In feb. Of '09 a ct showed a tumor in both adrenals. I was able to get into the mayo clinic and was diagnosed with cushings and had surgery on 4/10/09.

One week later, my bp dropped, to 30 on the diastolic . My face hit the floor when I fainted. I had to be air lifted out. I received a concussion and broken nose. On 6/12/09 I had my nose operated on and a cyst taken out of my lip.

I'm on my maintenance dose of hydro (20/10). How long before I feel better? Diabetes improving. Blood pressure still high.

Labels: adrenal, bios, GailN

On my birthday, my new endocrinologist gave a name to my tormentor of the past 8 years - cushing's. I still can't believe it, I am stunned.

Eight years ago I was in pharmacy school and I had just had a baby. I never could breast feed after I had the baby, my milk never came in. I remember reading that it usually involved the pituitary when women can't breastfeed and I remember reading about cushing's and I thought 'Oh no, I cant possibly have cushing's! '

I was trying every crazy crash diet on the planet and couldn't lose weight. I never could get any sleep, I had night sweats, hot flashes, irregular periods, skin boils, acne, my teeth were falling apart, I started looking more pregnant than when I actually was pregnant, and I had what I thought was a knot at the base of my neck from reading text books all day long. I thought all my problems were due to having the baby.

When I complained about not being able to lose weight to my family doctor, she said "well if you are only cutting back a little and just walk arounf the block , you are not going to lose weight." I was so pissed. She assumed I wasn't doing all I could to lose weight! Meanwhile I was starving myself & exercising daily.

Several months later I met a patient with Pcos in a clinc while I was on rotations and she had irregular periods like myself. I thought aha! Pcos, that's what I have. I begged my family doctor to test my hormones. At first she wouldn't, then she finally relented. My labs were all messed up - I low testosterone and zero estrogen!

She referred me to an endocrinologist who gave the diagnosis of pcos after labs & an ultra sound. He put me on yasmin, spironolactone, and metformin. I did lose some weight on metformin, but I still felt crappy. Several years pass by, I've graduated pharmacy school, and I am working in the crazy healthcare system in a demanding high stress fast paced job in a busy hospital. I get pregnant again and stop my pcos meds.

Now my body REALLY goes off on me. My face starts to bloat, my skin and face become unrecognizable to me. After I have the baby, my teeth really start falling apart like crazy, my face turns golden orange, I get cold when everyone is hot, and hot when everyone is cold, I start having back pain, I start getting strange headaches, I become very forgetful, my periods become non existant, I become really irritable (almost insane really), I get yeast & vaginal infections every other month, the 'knot' on my neck is getting bigger (from bending over a computer monitor, I assumed) and my hair was falling out by the handful. What really scared me was my hair & teeth. I know it sounds crazy but I always had long super thick hair and perfect teeth (at least my dentist always said so) So I knew something was really wrong, but I thought it was PCOS and/or I was becoming diabetic.

I went to my family doctor who told me that it was all in my mind or due to stress and aging. At that time I was only 31 years old. I couldn't except that I was supposed to be geriatric at 31. Meanwhile I was seeing an incompetent endocrinologist that wouldn't even restart my pcos medications for me. I still get the feeling that she was waiting for me to slowly become diabetic so she could treat me for diabetes, because that was her specialty.

Any way, this past february 2009, my throat developed a lump that was rock hard and I could not swallow with out choking. My family doctor diagnosed me with 'thyroiditis'. I got fed up with my endocrinologist and switched to a new one. When I came to the first appointment, she read my chart, listened to my list of problems. took one look at me and said "Cushing's". I felt like I was slapped in the face or kicked in the stomach. I thought it was my thyroid, or diabetes, or pcos! I didn't even remember much about cushing's at that point, but I vaguely remembered from school that it was a disease that you did NOT want because it is not easy to treat.

Now I am in the wonderfully looong process of being tested, poked and prodded. My husband is a wonderful man, but he still doesn't fully understand. My family thinks I am crazy & making everything up, I feel like no one fully understands except for the women & men here. I pray for cure soon.

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."
Romans 8:28

Labels: bios, not yet diagnosed, PCOS, TanyaW

9-07 SURGERY: 1’ colon removed (pre-cancerous tumor removed)
10-07 SYMPTOMS STARTED: hundreds of daily: “pops” in neck, stabbing pains in base of skull, throat, shoulder, with hundreds of random screams daily for months
1-08 BODY JOLTS START: myoclonic jerks and involuntary movements - mostly when relaxed. These come with or without loud screams, gasps or other vocal noises. They movements and screams are ongoing and continue to get stronger.
2-08 MOUTH/JAW/TONGUE: randomly the tongue tingles, the jaw & cheek have pain, the mouth, tongue or teeth get ice cold, the mouth waters for hours. This is ongoing.
4-08 MUSCLE TWITCHES: randomly, different muscles twitch, hundreds of times daily (like body is making popcorn). This is ongoing.
8-08 KNEE POPS: just like neck, initially, it pops and has pain hundred of times daily. This is ongoing.
9-08 FATIGUE: have less strength and stamina after a few hours of work. This is ongoing.
5-09 DIAGNOSED: small tumor on pituitary and high cortisol level. Scheduled for surgery at Mayo in July.

My symptoms all started after a major surgery, so I thought something, like a pinched nerved happened during surgery or something to do with surgery, but doctors kept saying not possible. (I have since found out that surgery can trigger a dormant disease.)

Since my symptoms initially seemed like nerve or muscle problems, I spent several months trying the chiropractor, physical therapy, ibuprofen, hot packs, MRI’s EMG, steroid shots, alpha-stim treatments, and different pain killers. Nothing helped. The different neurologists couldn’t find anything wrong and thought maybe it was stress/anxiety/depression even though I told them it wasn’t. I even went on relaxing vacations and tried depression pills with no improvement. We continued with different blood test throughout 2008-09.

One day when I put on a necklace and it was too small, I knew I had gained too much weight (25lb in 1.5 yrs). I started a diet, but found that my pulse rate would get way too high. I mentioned the weight gain and suggested checking the endocrine system to my doctor. So I did a urine test and the cortisol level came back high and we pursued that direction and Cushing’s was diagnosed.

The above symptoms were the most severe ones. There were alot of strange symptoms that came and went but the ones listed above were the main complaints. Most of my symptoms do not seem to be typical of Cushing’s, so I hope that is the only problem I have and that surgery will take care of it.

I would be very curious to hear if anyone else has had these types of symptoms. Now that I look at Cushing’s symptoms, there are several that apply and most were never mentioned to the doctor as we tried to find a diagnosis, such as:

Weight gain, Fatigue, Muscle weakness, Rounding face, Easily bruised, Slow healing of cuts, insect bites and infections, Acne

Labels: bios, Lory, pituitary

I'm 25 years old and was diagnosed last week with cushings syndrome.

I'm one of the lucky 1% and I do mean lucky since it's curable, to have a a tumor on my adrenal. I never thought I'd be so happy to hear "you have a tumor"

I have surgery schgeduled for 7/6. I'm quite scared but excited.

She will be interviewed in the Cushings Help Voice Chat / Podcast series after her surgery.

Labels: adrenal, bios, Joslyn

Well, I was first diagnosed in 1990 after a year of tests and years of symptoms which I put down to my age (early 20s!!). I had a TSA to remove the pituitary tumour and was put on replacement therapy with steroids.

I lost LOADS of weight and felt better within days of the op. I felt I carried on improving for about 4 or 5 years post-surgery then felt 'normal'.

But about 3 or 4 years ago now I started getting symptoms again. I didn't know it then, but looking back now I know I did. I had cut down my steroids a little but my consultant's team didn't think it was anything important. I cut down again 2 years ago and again they didn't think it mattered. At Christmas I cut down to 5mg of hydrocortisone a day in the morning. My GP wrote to my consultant to say I thought I wasn't getting enough steroid and they were going to admit me for a day curve, but the paperwork never got done.

I chased this all up 2 weeks ago and have now been off all steroids for 2 weeks, have had a short synacthen with levels of steroid showing prior to the synacthen, 3 24 hour cortisols results awaited and a midnight Dexamethasone suppression results awaited.

It seems that my Cushing's has recurred after 18 years.

Update June 3, 2009

3 June 2009 - I have now had short Synacthen. My basal cortisol was in excess of 700 and after the synacthen went to over 1000. I have also had 3 high 24 hour urinary cortisols and an overnight dexamethasone suppression which didn't suppress and I had a level of in excess of 600. I have been booked for a MRI which I have been told will be in 4-6 weeks. I will also be called for 5 days of dexamethasone suppression at some point. I am getting depressed because all the symptoms I had first time round are coming back.

I can't walk more than a couple of 100 yards without being out of breath and aching, I can't climb stairs without a handrail, etc, etc, etc,...... It looks like my Cushings has come back but I so wish they would get on and sort it.

Labels: bios, Fiona, pituitary, surgery

I was diagnosed with PCOS about 10 years ago.

Had gastric bypass surgery 7 years ago and in the last 2 years have packed on the weight again, cortisol blood tests were high, and did a UFC, which came back at 47, which is < 50 for the 'possible' diagnosis, but my doctor is going to refer me to another endocrinologist, because she isnt sure if its PCOS, or something else..... so, HERE we go again.

Update June 2, 2009

Approx 10 years ago, I was diagnosed with PCOS, due to high androgen levels, and insulin resistance, infertility.... I was told, 'Lose weight and everything will be fine.' So, I researched different ways, did every diet you can think of, all to no avail.... i would lose 20lbs.... gain 30...
.
In 2000 I decided on GASTRIC BYPASS Surgery..... NOW- Dont get me wrong.... I would NOT be alive today, if I had not gone this drastic route, BUT- the complications are many, and varied..... and they blame all my current issues on THAT, when IN FACT, I know..... there is more to it....

"You are bipolar... Aneamic, Vit b12 deficient, Vit D deficient' ...... Varied symtoms include and are NOT limited to: UNcontrollable sweats, edema- which causes swollen hands and feet, which in turn cause BURNING ITCHING in said hands and feet, headaches that LAST for weeks at a time.... poor sleeping, wake up 3-4 times a night (subsequent Sleep study revealed -- i woke up 28 times that night) -- Snoring, but, NO sleep apnea. Sores on face, in ears, on scalp that during times of 'stress' CANNOT be relieved. Oily, but DRY skin. Psoriasis on knees, elbows, and sides of nose, IN ears. Optic Nerves that are TWICE the size of any 'normal' person, Glaucoma suspect (pressure ranges between 9 and 22 - on any given occasion) --

I HAD big UGLY stretch marks on my abdomen--- before my panniculectomy in 2004 --- they got cut off.... =) i just thought they were.... STRETCH MARKS.... cause my belly was so fat....
As a child, i was hospitalized at the age of 6 weeks for pneumonia, and my 'hump' 1st appeared between 8 and 9 --- i also had a 'lump' on my forehead that doctors dismissed as - sinus related, due to many boughts of bronchitis, and pneumonia and subsequent tonsilectomy.... adenoids removed-- GREW BACK, had to have removed again.

menstrual irregularities began at age 12.... within 6 months of onset of menses.... weight ballooned... by the age of 18 --- i was over 200lbs.... by 25 -- well over 300lbs...

by 28 --- over 400lbs.... at 5 foot 8 --- not THAT big a deal, but, the energy was NON-existent..... life was slipping away.....

In 2000- doc checked CORTISOL --- it was in the middle of the day --- and it was 39 (serum) --- had my do UFC--- and it was 'normal' -- according to records....
LABELED AS: PCOS --- end of story.

Till now.... weight is creeping UP.... despite 1100cals a day ...... Sleep again..... all messed up..... HEADACHES almost daily...... sun makes me wanna cry, but the pressure from 'rain' and damp days makes me ache like there is no tommorrow.... face broken out.... hairs on my chinny chin chin have gone from ..... a spackling to.... a BEARD.... Charly horses in my calves, thighs and lower back.... and a NEW ONE---- in the back of my right arm....

Energy ??? Whats that ...... remember something ???? HA, what a joke.... i forget stuff from room to room.... and my house is only 1000 SQ FEET.... and even now, I am sure i am forgetting SOME symptom .... =)
recent tests:

SERUM CORTISOL -- 8AM: 27 (ref range high is 22)
UFC- 42 (ref range < 50 )

ENDOs TESTS:
ACTH - 8AM Fasting: 46h reference range is 7 to 27
Serum Cortisol 42h ref range: 4.6 to 20.6
UFC 37 ref range 4 to 50
17-OHP < 8 (any phase menstrual cycle s/b 285 )

Email Jennifer

Labels: bios, gastric bypass, Jennifer, PCOS

Hello everyone, I'm a 32 year old female who has been very ill for the last four years and seems to be getting worse.

I started off with symptoms of dizziness, headaches, aniety adn slight depression. Like the life was starting to get sucked out of me. I'm now faced with the same problems but now on top of this I have vision (blurred and double), headaches daily, confusion, flaky like, memory problems, sore bones, nausea but no vomitting, puffy face (moon face) I have swollen hands and feet but not always. I also suffer from terribe night sweats and wake up in the morning feelingwiht major heart palpitations, confusion, face very swollen including my nose.

I have been tested for everything under the sun from MS, to meuniers, seen by adn ENT, endocrenologist, neffronologist and my family doc and no one can figure me out.

In January of 2009 I passed a bunch of blood tests and 24 hour cortisol urine test.

Its now June and we found out that my cortisols levels are at 4200 when the normal is 600. They doctors have had these resultssince January and I guess by passed it. I'm now waiting for a catscan to check for a pituitary tumor.

Does anyone know of this? Has antone gone throug this?

Everyday seems to get worse......I'm trying to stay very postive but feeling like I am on a really bad hangover that I can't shake is starting to get to me.

Email Jessa

Labels: bios, Jessa, not yet diagnosed

2000 left adrenalectomy...post op electrolyte crash ...bad day!
2001 Broke right ankle 10 screws and a plate
2002 Pneumonia staph and strep
2003...Went ack to work
2004 Thyroidectomy : due to tumor; malignant on biopsy ...benign @ surgery...YAHOOO!!
2005 Better still working
2006 Still here!
2007 Quit work @ 46
2008 1st grand baby born
May 2009 Saw Dr. Friedman and waiting for results
May 2009 got results 3mm pit tumor anterior...WHY???
May 2009 SOOOOOO CONFUSED: But gonna get over that too!!!
DR. Friedman did not seem shocked and for once I wasn't the most difficult diagnosis in te room


Lynn was a guest in a Live Interview in the Cushings Help Voice Chat / Podcast series. Listen here, through our podcast page or on iTunes (search for "Cushie Chats").

Email Lynn

Labels: adrenal, bios, Lynn, pituitary

I have just been diagnosed with PCOS and I am now waiting to find out if I have Cushings.

I realy feel that I have all the symptoms and the physical appearance of Cushings. In some ways I realy want to be diagnosed with it so that I can finally put a name to all of the symtoms I have experienced over the years.

Labels: bios, Naira, not yet diagnosed, PCOS

I am a 47-year-old female, and have not felt well for 3 years now.

Two years ago I went to a local endocrinologist who looked at my ACTH and Cortisol numbers and told me to lose weight and go home and relax. She said to eat several small meals a day and to get stress free. Two weeks ago I saw a rheumatologist who looked at my lab results and said, "I think you have Cushing's. I think it might be from an adrenal gland tumor. Your ACTH is low and your Cortisol is high. I want you to go see this endocrinologist; she will love you." I had never heard of this, and I sat there stunned because I thought it would be yet another appointment with a doctor advising me to go home with some antidepressents. I cried the two-hour drive home reliving the number of times a doctor said, "I don't have time for this [when presented with my list of symptoms]" or another doctor who looked at my list of symptoms and said it was proof I was just anxious. She then told me to "stay off the internet."

My symptoms: gall bladder surgery, weight loss, weight gains, hairs on my chinny chin chin, morning blood sugar around 100. lots of dizziness, heart palpitations, ringing in my ears, thick skin on my arms, losing patches of hair on arms and legs, head hair in bad shape--way brittle, and very bad memory. The littlest of things can get my engine running--paying bills, answering the phone. I'm wondering if this is cortisol related.

Self Help--Monthy healing massage, beta blocker, acupuncture, chiropractor, naturopath with procaine treatments and vitamins, minerals, and fish oil.

I am beginning my journey.

Namaste ~Evin

Email Evin

Labels: adrenal, bios, Evin, not yet diagnosed

I was first diagnosed with Cushing's disease in January 2002. I suffered from this disease for approximately 4 years, all the while seeing doctors who had no idea what was wrong with me.

I finally connected with a wonderful doctor in January 2002 and he took one look at me and knew what was wrong he had me do a battery of tests and found that I was in the last stages of Cushing's and in fact he could not believe I was still alive with the acth and cotisol levels in my body. I was so severe that it damaged my heart and I have an implanted defibulator.

I underwent the transphanodial procedure in May of 2002 and could not believe the difference in my quality of life. Unfortunately I came out of remmission in the end of 2005 and underwent the same procedure again in February 2006. It took 1 & 1/2 years for anything to show up in my labwork due to it being cylical.

I am now again struck down with this disease. I am constantly feeling bad and again playing the waiting game for my labs to show proof. My family feels helpless due to the fact nothing can be done at this point and I know that I will only go downhill further before anything shows up.

The doctors talk about the next step is to remove my adrenal glands. This is also scary however I am to the point that I am really ready to do this if it means my quality of life will improve.

I would really love to talk to people who have been in my situation and maybe who have undergone adrenal surgery.

Email Cindy

Labels: bios, Cindy, pituitary, surgery

My daughter is 19 years old.

about 4 years ago her periods stopped...looking for a possible cause blood work was taken and she had significant rise in prolactin levels.

An MRI was taken and a prolactinoma of 2mm was found on her pituritary gland.

A few months later she fell pregnant and had a beautiful healthy baby boy.....After the pregnancy prolactin levels were still high but an MRI showed that the tumor had gone ???

Since then (about 15 months) my daughter has gained about 30 kilos, tired all the time hump on her back (neck) a much more rounded face, and her periods have returned but they are never on time. She has also been treated for what they believe was postpartum depression.

Does anyone know if a tumor can just disappear? And what test would you ask for now?

After reading this web site I cant believve that her endo hasnt checked her for cushings.

Thankyou Dee

(MaryO note: Although Dee asks several questions, she didn't give permission for a link to her email address to be added to her bio)

Labels: bios, Dee, pituitary, prolactinoma

Hi, I am a newly diagnosed cushy. I also have fibromyalgia.

I am 40yrs old. Live in Limerick city in Ireland.

I hope to give and receive support on my journy to recovery.

Email Dara

Labels: bios, Dara, fibromyalgia, pituitary

Hard to know where to start. I think I am cyclic cushing's.

I think it started when I was a child(7-8 years old). 2 years ago I was diagnosed w/ PCOS. Last year, mild hypothyroidism.

Summer of 2008, had UFC of 68.
Dex supp. test--0.7.
Salivary cortisol AM-13, MN--3.
Feb/09 UFC--24.9.
April/09 Salivary cortisol AM--10, MN--4.

Buffalo hump getting bigger. Facial hair for years(electrolysis for years-ouch!). Male pattern balding. Polyps in uterus. Weight usually 200lb, unless severe diet and exercise, then 180.

Labels: bios, Melanie, not yet diagnosed, PCOS

After 6 years my Dr finally got me a MRI and found a pituitary tumor. That was one month ago.

I am driving over 60 miles to see my Endo, who is currently running all the tests. She found my cortisol high and my growth hormone also high. I am currently half way through a five day dexamethasone test. And Nervous!!!

I have all the Cushing's symptoms from the Buffalo Hump to uncontrolled Blood Pressure. This website has helped me a lot in understanding what I am facing. So far the Dr have been real cut and dry just reading off test results and failing to explain much. I can not stand waiting for the outcome. I really want to get healthy.

I am 29 years old, will be married for 10 years in Sept. to the most amazing man in the world!!! 10 years ago I weighed 105lbs and was petite cute and adorable. I now look more like Pheonia off Shrek.

I have an 8 year old genius for a son and a very high energy 7 year old daughter. I'm starting to feel like I'm failing my kids because I can no longer keep up with them. From the baseball games, school activities, cheerleading, to just getting them dinner every night.

I also work a very stressful but supportive part time job at the local DMV. My Bosses have shown me the upmost respect and support.

I am scared but releived and excited to finally be diagnosised. Maybe I wasn't crazy.


Email Shirley

Labels: bios, pituitary, Shirley

I am 37 and had surgery to remove half of my pituitary after finding out I had cushings.

I have had many health issues that started about 8 years ago after the birth of my son. I have a daughter and after her birth my symptoms escalated about 3 years ago. They both have neurological issues which the doctors can't tell me if they are related to my having possible untreated cushings.

After my surgery now I am having adrenal insufficincy which I take replacement cortisol for. I am supposed to decrease my dose; however, when I try my body starts to have symptoms of adrneal crisis.

It has been frustrating to be sick for so long and have doctors and friends treat you like a hypochondriac when you are having real symptoms. Now I have a diagnosis it is a relief. However, I am still very frustrated because I want to feel better and it has been going very slowly.

Email Jodi

Labels: bios, Jodi, pituitary

My bio - I don't realy know where to start... I've been diagnosed for 6 months now after years of symptoms (the hump, belly, very thin hair, straie all over, bruising, confusion, exhaustion, weakness) to name but a few, but things seem to have gotten worse since my first pituitary surgery in January this year, that failed to cure me, i became ill with staphicoccal septisemia and was hospitalised for 3 weeks.

My second pituitary surgery in March, again failed to cure me, aparantly they can't get all the tumor.

I'm having an adrenalectomy in a month or so and then I must have radiotherapy to get rid of the rest of my pituitary tumor.

I feel like my life is over, I feel so old, all my joints hurt alot and it's difficult to move around - is there ever an end to all of this?

Email angelp

Labels: adrenal, angelp, bios, PCOS, pituitary

Hi.. I'm so glad I've found this sight! It helps to know that you are not alone.

I've was diagnosed with PCOS a few years ago and have been dealing with those symptoms since. However, in the last couple of years, things started to go downhill! ..

Experienceing the typical Cushing's smyptoms. I remember I gianed 30lbs, in what almost felt like a week! Thinning of the skin, bruise easily, neck hump, etc.All of the classic symptoms. I started doing research and found out about Cushings...never having heard of it b4.

These past few months I've had numerous tests, confirming my cortisol levels are very high. So then the search began to find the source. Adrenal problems were dismissed due to the test results. I've had an Mri which found nothing on the pituitary, as well as a Cat Scan of the chest/lungs.. and nothing.

And so this is where I'm at.. very frustrated and confused. Doc is requesting I get yet another MRI..of the pituitary and then possibly a Petrosal Sinus test, which I think is very invasive and I rather not do!

He is a specialist in ednocronology and works with specialist in Cushings.. could the cronic high level of cortisol be caused by something else other than a tumor?

Labels: bios, not yet diagnosed, PCOS, Sue

Hello, my name is Kate. I am so glad that I found this group , , , I think I have had Cushings for the past 10 years.

My doctor has done blood test on me and said I was hyperthyroid. I know there is more to it than that - I have all but 2 or 3 of the symptoms listed for Cushings and since my doctor doesn't seem to want to take the time to deal with me, she finally gave me a referrel to an endocrinologist.

My appointment is tomorrow. I am both nervous and excited, because after all this time I think I have finally found out what is wrong with me . . . thanks to all the posts and blogs I have read (through teary eyes).

Does anyone have any suggestions for my appointment tomorrow.?

Email Kate

Labels: bios, Kate2, not yet diagnosed

Hi to all

I've been lurking on the boards and Cushings-Help website for just over 12 months now and decided it was about time to introduce myself.

My hometown is Melbourne Australia, but currently I'm living in Port Moresby, Papua New Guinea with my husband and two sons (8 and 11). It's a beautiful place to live, but the healthcare system is not so fantastic.

I became interested in cushings when, within the space of 2 days, 2 different doctors in Melbourne mentioned it to me as a possible cause of my health problems. My blood pressure, which had been well controlled, had gone haywire; as had my diabetes which I'd been able to well control with just diet and exercise. I managed to put on about 15kgs in 1 month without doing anything different and was having problems with concentration, mood, muscle aches, fatigue, bruising etc..... needless to say I look like the cushings images although that wasn't always the case.

In late May 2008 I was asked to do the 24 hour UFC, but wasn't told to refrigerate my sample - and I ran out of room in the container and had to put the last collection in a soda water bottle (as advised by the pathology lab at 5.30 in the morning). I was told that the test results were within normal limits - but now question the validity of the results.

In December 2008 I visited an endocrinologist who agreed to test for cyclic cushings, stating that the UFC wasn't a great diagnostic test. He changed my diabetes medication from metformin to glicazide (due to bowel problems) and ordered the 1mg overnight dexamethasone test (stating that this was the best test to indicate the presence of cushings). Apparently I suppressed, but once again, I'm not sure of my exact result. On my follow-up visit in March 2009, there was no further mention of cushings and he decided that the metformin had not been causing my bowel problems and switched my medication back again.

Naturally, I'm getting frustrated (as is my husband). I'm doing everything the doctors tell me to do and don't see or feel any improvement ... but I'm not going to give in!

Thanks to all those who have posted before me - without your stories I wouldn't have had the strength or confidence to post myself!

Email Angie

Labels: Angie, bios, diabetes, not yet diagnosed

Hi, my name is Vanessa, I live in Phoenx, AZ.

I have recently been diagnosed with a piluitary tumor. This nighmare started about two years ago, I started gaining a lot of weight and feeling very tired. I went to my doctor who tested my thyroid and said I was hypo, the medicine helped with the fatigue but not the weight. I was constantly complaining to my doctor about my weight since I worked out daily.

Three weeks ago I went back to my doctor and she thought I had PCOS, a blood test was run and my cortisol levels came back high, a 24 hour urine test and an MRI revealed a putulitary tumor. I'm very scared and feel like this whole sitution is sureal.

I am currently seeking in endo in the area. Any recommendations would be greatly appreciated.

Email Vanessa

Labels: bios, PCOS, pituitary, Vanessa

23 yr old married woman who was recently diagnosed with Cushing Syndrome.

I have a tumor the size of my pituitary gland. Very scared. I am having the tumor removed in August and I dont really know what to expect?

Labels: bios, pituitary, Rachael

Hi Fellow Cushies! I am so happy to see some sort of support group for people with Cushings Syndrome.

Well, I am a 23 year old female orig from Cali but going to school here in Fort Collins. I am a Massage Therapist and to be Physical Therapist. Coming to Colorado has changed my life in many ways but it was here that I was "diagnosed" with Cushings. Since I could no longer afford insurance, I was not formally diagnosed but my Dr pretty much was on that path.

Finding out I have Cushings is actually such a relief and just knowing Imnot going crazy helps alot:) I was a competitive swimmer for15 years whichI think sort of fueled or fed off of my Cushings. Im not sure if I was such a good swimmer because of the constant release of adrenaline or if I made the Cushings worse by being so intense all the time. None the less I am here to try and learnmore about my disease and talk wih others about it.

Currently I am in school and working full time so stress is very plentiful. I do not take pharaceuticals at all and am trying to manage this through healthy eating,massage and acupuncture andso far I am seeing good results. I am open to any other alternative modality as this does not seem to be enough. I find myself stressing over the smallest of things but in my mind they are major.

If anyone wants to talk about this please email me, as I am looking for people with similar feelings as me. Happy Health!

Email Shiloh

Labels: bios, not yet diagnosed, Shiloh

I would like to begin by letting everyone that participates in this site know how much they are actually doing for people. I don't see how I could have made it through the last several months without this site. I am 27, and have recently been diagnosed with Cushing's. What type I am unsure as of yet, but should have more answers in a few weeks.

As many of the women here, I have been plauged by a group of symptoms that has gotten progressively worse and worse. After dozens of trips to the doctor for what was seemingly unrelated instances, I finally began researching my problems as a whole. I began this part of the quest in early February when I (with my extremely supportive mother) sat down with my PCP and told him I needed help. The weight, skin problems, purple stretch marks, excess hair where it shouldn't be and not enough where it should....the list is very similar to many others here. In addition, the burden of trying to manage all of this with the emotional repercussions was growing too much for me to handle.

My doctor was understanding, and said he thought I had PCOS. Having been on birth control pills continuously for almost ten years, I had no idea whether my cycle was actually normal or not. He immediately wrote me a prescription for Aldactone, said we would consider Metformin the next visit depending on my labs, and sent me for blood work and an ovarian ultrasound.

I left the office feeling as if a weight had been lifted off of me. There was hope for me yet, and for all of my terrible symptoms that for so many years the medical profession had been attributing to me letting myself go, or just getting older. After several weeks, with the blood work and ultrasound complete, I received a call from my doctor. All of my labs were normal. In fact, my testosterone, which we all expected to be through the roof, was actually a little low. The ultrasound showed not even a trace of an ovarian cyst, perfectly normal.

At this point I began to question my sanity. How could I have hair growing in the places it was growing with low testosterone?!?! Needless to say, my doctor said he suspected that I had some sort of adrenal disorder, not PCOS, and referred me to an endo. After this phone call, I googled : Adrenal disorder misdiagnosed PCOS. Here is where I ended up, and turns out that three months of doctor visits have confirmed that I am indeed in the right place.

The first physical exam was exciting (to be getting somewhere) and just as embarassing. Waiting for my initial bloodwork was agony, although I knew what it would show. I knew the course of tests that would follow, and have been dead on so far. My plasma cortisol at 10 am was through the roof....then we moved on to the 24-hour Urinary Free Cortisol Test....which again was through the roof. We followed up with the midnight salivary test, which fell right in line as abnormally high.

This coming Wednesday, I will complete the Overnight Dexamethasone Supression Test. I am anxious, terrified, and excited. I am so hopeful that there is a possibility I may get my life back. I wish my life had a fast forward button....I don't want to live this life anymore, I want my life back. I used to be beautiful, happy, and confident. Now I just want to live in a cave and never have to interact with another person.

In the midst of all of this, my fiancee cheated on me. Talk about kicking someone while they're down....I have learned a valueable lesson; Just when you think it can't get any worse, it can, and it does. I certainly don't mean to emphasize the negative, but sometimes it's too much to handle. I am so very thankful for all of the selfless and wonderful people involved in this site that have told their stories. I honestly don't think I could make it through a day without this site, it, along with the best mom in the world have been my rocks, and I can't express my gratitude enough.

To those who may read this, there is hope for you, and there is hope for me too. The process of diagnoses is painfully slow, and the thought of dealing with your symptoms for any longer is miserable, I know. But, lets rely on each others stories and experiences for support. I will update as I learn more, and anyone please feel free to contact me, and thanks again to everyone.

Email Luisa

Labels: bios, Luisa, not yet diagnosed, PCOS

Hi everyone, my name is Song and I just turned 37 yrs old, married with wonderful husband and a 2 yr old baby.

Never in a million years would I ever thought I would be here today. I have been treated for little medical problems one at a time in the past 18 yrs in the military. I can only assume from the symptoms that my struggle started maybe 6-8 yrs ago. Every since then, it's been one thing after another very slowly. Lately, in the 2 yrs, I felt like all my symptoms were and still are ganging up me. It's going on almost 1 yr since I've started my venture into finding out what's wrong with me. It's great to have military healthcare but the providers are same as any other providers in the world. Around I went and tests after test I had.

I had to change duty assignment to overseas at some point and start all over again. I could not take my family since it was an unaccompanied tour. I went to the new duty station being 52 lbs overweight . (Yes, I did physical training at my last duty station) Imagine how embarrassed I was and thought I should have done more physical training or ate less. Let's just say, as an NCO in the Army, I was unsatifactory and took the consequences. Since this duty sation, I've been put on drugs for my mentbal problems which are same as Cushing's symptoms. Oh, did I mention, I am in a Supervisor position over a patient care section in a hospital which is very stressful. I have been working out 2x a day except Thursdays which is once a day, dieting(unhealthy), and other extreme measures to lose 25 lbs in 6 months. There was no more weigh loss since then except weight gain.

By pure luck, I met a fellow NCO's wife at a birthday party over a month ago who right off the bat saw my "buffalo hump" and asked if I knew about the Cushing's Syndrome.We talked about it most of the evening and hence started my mission to see if I had it. I researched online and read what I could about it. I realized all my symptoms matched Cushing's Syndrome symptoms. I made my appointment and saw my provider. I asked for the urine test for Cushing's Syndrome and why. It took a little convincing but he did it. When I went back for the result, he told me that I definitely had increased cortisol in my urine. He said he have to recommend me to a specialist in order to get a diagnosis. Unfortunately, I will not be seen any time soon due to appointment availability.

Meanwhile, my mind is going crazy. I want confirmation before I tell my husband and family members. Maybe there still is hope it's just something simple? What I do know is, being in my position at the hospital, I do not want anyone including my superiors in the military to know about this but at the same time I question if I am capable to continue my position. I have noone to talk to about this which is why I am here on this blog. You all understand more then I can from your experiences.

Labels: bios, not yet diagnosed, Song

I am still in the your crazy and need gastric bypass phase, even though I have ALMOST every one of the symptoms of Cushing's Syndrome. I will prevail!

New Endo appt. Monday (May 4th)! Pray!

Email Alisha

Labels: Alisha, bios, not yet diagnosed

I was diagnosed with Cushing's disease September 2007. I've had transnasal surgery 10/2007 and stereotactic surgery 8/2008. Both surgeries have failed.

I feel worse every day that passes by. I have all the typical symptoms. I've gained 80 lbs, moon face, central obesity, high blood pressure, migraines, blurred vision, prominent buffalo hump, osteoporosis, very fatigued, weak muscles, muscle pain, fast palpitations, I just feel terrible.

I'm afraid to go to sleep every night not knowing if im going to wake up. I just keep wondering how will I know when the time is near for me to go. What am I going to start feeling? Will my organs start to shut down?

I know im at a high risk for a stroke because im so overweight. My current cortisol is in the 200's. I took ketaconozole for a month and ended up in the hospital because the medication was affecting my liver.

So im currently not doing anything about Cushing's. I just feel the light at the end of my tunnel keeps getting dimmer. I just feel sooooo tired all the time, I feel like my life is being sucked out of me. My eyes are so tired it's hard to keep them focused.... Im so tired of Cushing's I don't know what to do anymore.

Email Lulu

Labels: bios, Ketoconazole, Lulu, pituitary

Hi, I am Melissa. I am 22 and live in So Cal.

I was just within the past 2 weeks diagnosed with Cushing's. I guess I have had itsince 2007, but my previous doctor never did anything about it and now I am in the situation that I am in.

I guess I do not feel that any one around me really understands what I am going through and all the pain that I experience and so I came online to search for something just like this to talk to others about it!

Email Melissa

Labels: bios, Melissa2

I am newly diagnosed as having Cushings synndrome. They found a 3 cm tumor on my adrenal gland. I am 28 years old Type 1 diabetic of 18 years (extrememly controlled) and a brand new mom!!

I had a beautiful baby girl in January which I feel forever blessed. Other than being diabetic I have never been sick and have always been the picture of health.

I think this may have started about 2 years ago when I noticed I was getting acne for the first time and my hair was starting to curl and change texture. Did not think much of it but in hind site I feel this was the beginning of my journey.

As of right now I have the lovely moon face, swollen back and collar bone, horrible stretch marks on my belly, and back and knee pain. Not to mention the light peach fuzz that has grown on my face and upper arms:) Lovely:) I have not gained weight for some reason but my belly does look swollen.

The depression is really effecting me because I really want to focus on my baby right now not all of this.

I meet with my surgeon on Friday to schedule the adrenal removal and wonder if once this is done I will go back to normal? I know adrenal tumors are rare and would love to hear success stories. How long do the physical and mental symptoms take to go away? Also do most people end up on hormone replacement the rest of their lives or does your other adrenal gland kick in?

Unfortunately my endo is busy and I will not even be speaking with her until after my consultation with the the surgeon any answers you have would be greatly appreciated!!!

I would love to hear success stories but it seems all of the stories I have read have been really negative. Has anyone felt truly cured after an adrenal surgery?

(MaryO note: Although Aly asks several questions, she didn't give permission for a link to her email address to be added to her bio)

Labels: adrenal, Aly, bios, diabetes

Hey everyone in cushieland! Very happy to have found this website!

My name is Patty and I am a single mom of 4 kids, 3 are grown and my daughter is 13 and the last one here at home with me. I am a real estate agent (so basically unemployed!) and I am starting nursing school in July.

I have a pituitary tumor that has been called many things,but most recently they are calling it a rathke cleft cyst...frankly I don't think they know what the heck it is! Like most of you, I have been sick for many years and diagnosed with many different things, but no doc has called it Cushings yet, just treated me for all the symptoms over the years..hypothyroid, sleep-apnea, depression, migraines, ibs,...the list goes on and on.

The only thing I can't figure out is why I have nearly every symptom of Cushings and my docs look at me like I have three heads when I want to put everything together for a diagnosis of Cushings! I have poor health insurance (medicaid) so I mostly see residents and that is part of the problem.

I have a feeling if I could just get to see a Cushing's expert they could help me. Not much oppurtunity for that here in cincinnati,Ohio, especially one who will accept my insurance.

So I am here looking for support from my frustration and ideas on how to help myself. Meantime it is good to know I've found a group of people who will take me seriously (unlike the docs I'm dealing with!).

Email Patty

Labels: bios, Patty, pituitary, Rathke Cleft

I'm a 31 year old female. 5'6, 220lbs. I posted last year but can't find my original posting! Recently dx'ed with central adrenal insufficiency after an ITT (Insulin Tolerance Test).

Many of the symptoms fit: chronic fatigue, muscle weakness and aches & pains, total loss of libido, orthostatic hypotension, hypoglycemia, extreme sensitivity to touch and smell, inability to exercise, headaches, etc.

The problem is in my pituitary/hypothalmus gland, according to my endo. After a full year of tests, hospitals, labs, and moronic doctors, I found a good doc...after hearing my symptoms and sending me for a TTT (Tilt Table Test)...I was diagnosed with NMH (Neurally Mediated Hypotension) which explained my wooziness upon standing and regular fainting spells.

They started me on Midodrine for my heart, and then the blood cortisol test came back as low...so suddenly, my heart problem was actually caused by an adrenal problem that was actually stemming from the wrong signal that my pituitary was sending! Complicated, eh?

But I have many symptoms of Cushings and/or adrenal excess as well. Late menstruation, peripheral vision loss, large weight gain instead of loss. It seems to go through cycles-sometime I am wide awake at midnight. I also bruise easily and bleed profusely, and then clot other times. Despite my organic diet, my skin is now acne prone and flushed a reddish tint. My hair is gray, and won't absorb hair dye well. My gallbladder was removed last year even though I don't eat fatty foods. I constantly retain water.

They've tested my growth hormones and everything else looks fine.

I also have a big Vitamin D deficiency. I am taking 100,000 IU a week for that.

I am now taking 15mg of Hydrocortisone a day for the ACTH replacement therapy. It has definitely improved my fatigue, and helped with my aches & pains, and I haven't fainted once in a week.

But...the other issues are valid. I have worked with nutritionists...no one has helped my weight. I wasn't even chubby until my onset of symptoms at 18 (menstruation, weight gain, massive headaches, vision loss.)...I currently eat 800-1000 calories a day, and still gain weight. I know that the hydrocortisone isn't helping, but the problem was there before I started on it and at least I feel better.

I have a great husband and family & friends and am very lucky. I just want to be well. I really want kids, and I worry that if I don't get this straightened out, I won't be able to. And vainly, I want to be slim. Not model thin, but 150 lbs at my height of 5'6 isn't a lot to ask for, in my opinion.

Any advice? Has anyone heard of it being possible to have adrenal insufficiency AND Cushing's? My doctors are frustrated with me, and no one seems to have more answers. Thanks!

Email McCall

Labels: adrenal, bios, hypothalmus, McCall, pituitary

I don’t really remember when it first started. It was probably about a year ago when I think about it.

I found myself becoming easily tired all the time. I went from being a social butterfly and life of the party to an ‘old nana’ who stayed home all the time and went to bed early. At the time, I didn’t think anything of it; I just put it down to working hard and not sleeping well. I often had disturbed sleeps because I regularly (3 or 4 times a night) got up during the night to go to the bathroom and once I was awake, it sometimes took up to 2 hours to get back to sleep.

As the year progressed, I rapidly began to gain weight. Putting it down to ‘eating to many chocolate biscuits’ and not enough exercise, I began going to the gym 4-5 times per week and basically eating ‘rabbit food’.

The obsessive cleaning habit probably began around the same time as the weight gain; it got to the point where I couldn’t possibly think about doing anything else until I had cleaned every nook and cranny.

Throughout all of this, I was having very sporadic periods, which were very painful. I never imagined they could possibly be linked. I decided to visit my GP, who sent me off for numerous tests including an ultrasound, which resulted in a diagnosis of polycystic ovaries.

My GP referred me to an endocrinologist who then requested more tests, including a 24 hour urine collection (something I became very accustomed to during the course of my illness, eventually having to do them weekly). I heard nothing as a result of the tests, so I assumed all was fine.

As the months passed, my weight continued to raise, as it did, my self esteem fell. I also began to notice bright red stretch marks appearing on my stomach.

I reached the stage where my self esteem was so low that I decided to return to my GP. The first thing she said to me when I walked into her practice was “your face looks very cushingoid.” Having no idea what she meant, I sat down as she looked through my file. As she came across my test results that had been requested by the endocrinologist, her face dropped. The level of cortisol (stress hormone) in my urine was over 2000mg (the average person needs around 30mg per day). She instantly picked up the phone in a desperate bid to contact the endocrinologist, but was unable to get hold of him. Having left a number of messages, she told me she would be in touch once she had heard back, and so I left. I wasn’t really too concerned as at this stage, I had no idea just how important cortisol really was.

The next day at work, a phone call came through for me. It was the endocrinologist. He said I desperately needed to come in to see him. I left work straight away. When I arrived, he advised me I had Cushing’s syndrome. He spent the next few minutes telling me what this was, although it all went in one ear and out the other once he told me that it is 99% of the time caused by a pituitary tumor; all I could think of once he said tumor was ‘cancer’.

The following Monday, I was admitted to hospital for 10 days of tests (including 4 hourly blood tests)during which time my food obsession began (this obsession progressed to be the worst of them and became all I could think about). These tests concluded that I did indeed have Cushing’s.

The months that followed proved to be the hardest that I have ever faced. MRI scans, CT scans, numerous X rays. The hardest of all these was what they call a petrusal vein sampling (this is where they insert a catheter into the groin through the femoral vein which goes up to the base of the brain to look at the pituitary, they do this while awake – I could actually feel them moving around in my head.)

This test concluded that my Cushing’s was being caused by a tumor somewhere other than the pituitary (this only happens in 1% of cases, and there is about a 1 in 10 million chance of getting it). The question now was “where is the tumor?” I happened to be at one of my regular appointments at the same time as the Endocrinologist was to attend a meeting with the head of CT.

Together they looked at a CT scan I had previously had of my lungs, on which they spotted a small nodule which they believed could be the cause. Numerous more tests were to follow, including one where radioactive liquid (which I had to wait for over a month for to arrive from Australia) was injected into a vein in my arm, with the purpose of highlighting any tumors on a CT scan.

After such a long wait, this test proved a waste of time as it showed nothing (it turns out it only works 50% of the time anyway). Around the same time, I started having severe anxiety attacks, brought on by several major stresses. I decided the only way to ease the anxiety was to remove all the stresses possible; I did this by moving home to my parents.

The next week, another CT scan was required to see if the nodule had grown, it hadn’t. Feeling completely stumped, the endocrinologist decided to take a risk and remove the part of my lung that the nodule was on. Because it was so small, the surgeon required a hook wire to be placed in it in order to see where it was. This procedure was incredibly painful and one of the worst things during the whole illness that I’ve faced.

Disappointingly, this surgery was a failure, leaving me in the high dependency unit for 6 days and in immense pain.

The next step which was seen as a definite cure was to remove the adrenal glands (this really was a last resort, as once these are removed; hydrocortisone replacement is required for life in order to stay alive).

After this surgery, I spent another 6 days in the hospital, during which time, I experienced mood swings, dizziness, nausea and much more while my body adjusted to lower cortisol levels. I was sent home on morphine as I was still in so much pain from the surgery, however when I went in for a checkup 5 days after being discharged, the endocrinologist couldn’t believe I was still on it. In total I had been on it for 6 weeks, resulting in severe withdrawals when I stopped taking it (why anyone would voluntarily take drugs I will never know after going through this).

I am now 5 weeks down the track. I am not going back to normal as quickly as I had expected, physically; I am constantly tired and am still in pain from the lung operation which was 2 months ago, I’m told this could last up to year.

However, on a positive note, I have lost around 5 of the 15 kgs gained during the illness. I am also mostly back to normal mentally.

My Cushing’s disease is cured now, however I am now labeled as being a sufferer of Addison’s disease (where there are no adrenals, or the adrenals don’t work).

There is a long road ahead still, including reconstructive surgery of my legs, arms and torso, but I sure am glad to be out the other side of the worst of it.

Email Kirsty

Labels: adrenal, bios, ectopic, Kirsty, PCOS

I was diagnosed July 15, 2008 and had my surgery August 29, 2008. Its been hell ever since.

Email Jeff

Labels: bios, Jeff, pituitary

My name is Annie Ellis.....I have had multiple symptoms of Cushings for years and have just now found this site..a list of my symptoms...

Early menopause..age 37 fsh level 66
osteoporosis... age 40
unilateral galactorhea 10 years ...normal prolactim...normal mammo and normal galactogram
severe fatigue muscles very weak in thighs
mood swings
red face
very fat neck and shoulders thin arms
purple stretch marks hips abdomen breast.. attributed to three pregnancies, but had them prior to pregnancies as a teen
multiple kidney stones
SEVERE bilateral achilles tendinitits now casted in left ankle ...right ankle will be casted in six weeks
weight only 136 (5' 2'') but weight gain primarily in abdomen and face and neck 3 chins!
Will see endocrinologist on may 15, referred by rheumatologist who just ruled out rhuematic diseases
NO HIGH BLOOD PRESSURE

Email Anne

Labels: Anne, bios, not yet diagnosed

I FOUND THIS SITE WHEN RESEARCHING CUSHINGS, I HAVE A LOT OF THE SYMPTOMS DISCRIBED, I WAS TESTED WITH THE 24 HOUR URINE TEST WHICH CAME BACK NORMAL, THE OVERNIGHT SUPPRESSION TEST CAME BACK HIGH AND ONE CAT SCAN SHOWED A NODULE ON THE ADRENAL GLAND BUT ANOTHER SAID IT WAS THICKENING OF THE ADRENAL GLAND.

I HAVE NOT FELT WELL FOR A LONG TIME. I HAVE NECK AND BACK PROBLEMS AND I HAVE PRETTY MUCH THOUGHT MOST OF THE PROBLEMS WERE FROM THE PAIN, AND VERY HIGH BLOOD PRESSURE, I RECENTLY HAD KIDNEY STONES TOO, THE WEIGHT I CANT GET OFF, WE HAVE FIVE GROWN CHILDREN AND EVEN AFTER EACH BABY, IT WAS NOT DIFFICULT FOR ME TO LOSE THE WEIGHT, I CANT SEEM TO LOSE ANYTHING NOW AND ITS ALL IN MY BELLY.

THE DOCTOR IS REDOING THE TESTS. I TAKE THEM THIS WEEK. IT SOUNDS LIKE A LONG WAIT AND STRUGGLE FOR A LOT OF PEOPLE. I AM HOPING THEY CAN FIND OUT WHAT IS WRONG WITH ME. I HAVE A PRETTY GOOD LIFE I WOULD LIKE TO ENJOY IT.

ANY SUGESTIONS OR COMMENTS WOULD BE GREAT.

Email Debi

Labels: bios, Debi, not yet diagnosed

My daughter has been in the diagnostic process of Cushings for several months. It was also suggested that she might have "cyclic" Cushings.

She was initially lactating and her OB/GYN sent her for an MRI of the brain where they confirmed a 4 mm tumor on the pituitary gland. She has had numerous blood tests and hos done 3 - 24 hour urines. She finally switched to a second endocrinologist as the first seemed to be dragging his feet and he wasn't communicating very well. Whichever of the two tests have the normal range of 0 - 50, hers was 1,200+.

At this time, I believe the blood tests are coming back better than initially so that is why the repeat urines as this new doctor stated that on the blood tests, it appears she has almost no hormones although she is having regular menses.

After 3 additional urines, this physician is going to refer her to a surgeon at Barnes Hospital for removal of the tumor. My daughter was not considering removal of the tumor before as she was hoping to have one more child. The new doctor said she needs to eliminate the problem, which is the tumor, and that according to the hormone level, she will probably not even be able to conceive.

She is also going to be getting a Dexa Scan due to the great deal of pain that she experiences. The 1st endocrinologist also mentioned a probably adrenal or lung tumor and when later questioned replied with he doesn't want to talk about this right now but to just be patient and give him time. (I attended with her at this particular visit.)

Any input would be greatly appreciated. Any infomation about Cushings, it's long term effect, removal, etc.

Thanks and God Bless to all of you!

Betty

Labels: Betty, bios, pituitary

I am a mother to a 12 year old. My daughter Jules, is going through testing for cushing which is what her pediatrician/ endocrinoligist seems to believe that she may have.

I am frustrated because to weeks ago today we sumbitted her 24 hour urine samples and they still do not have the results???

Julia has been putting on weigh almost weekly for the past few months, she has developed stretch marks on her thighs, she has complained about headaches, has been missing periods, apparently she has high pressure as well.

Our largest issue is that she has a very high tolerance for pain. I don't know what else to do. In my heart I have known for a while that something is wrong, yet no one took us seriously.

Any suggestions on what we should do to expedite testing? Is an endocrinologist the only one who deals with Cushings? I am open to any advise. Is there any testing we could perhaps do privately?

Many thanks,
Yol

Labels: bios, daughter, Yol

I had Cushing's in 2002 and I was very sick and I believe I am still affected by the high cortisol level I had and that it realyy ruined my body.

I had surgery to remove an adreno cortical carcinoma which was producing the high levels that were making me so sick.

I am 59 years old and would like to be a part of this group again to talk with others who were so affected.

sandra b.

Email Sandra

Labels: adrenal, bios, Sandra

In May of 2008, I was diagnosed with 2 tumors on my left adrenal gland. I'm on my 4th endo who just recently diganosed me with Cushings.

I suffer from low potassium, stage 3 kidney failure, several muscle aches, extreme tiredness, and various of other systoms of this awful diagnoses. Why don't they just remove the tumors????

I have went to doctor after doctor for almost 2 years before even being diagnosed. I gained 80 lbs, have now lost 50 of those just from being so sick.

Email Tami

Labels: adrenal, bios, Tami

My name is Jada, I have been married to a wonderful man for 10 years and we have 4 beautiful children, a daughter who is 17 and three sons ages 12, 7, and 5. I have been an ER / ICU RN for 16 years and loved my job. Since childhood I was always healthy and active, I was never overweight and there was no obesity anywhere in our family. I maintained an average weight of about 98-102 pounds until my last child was born (I weighed in at 112 pounds at my first pregnancy checkup with my fourth child). I had always gained more than the reccommended weight in each of my pregnancies, but bounced right back into shape within 5-7 months. I maintained a healthy diet and was always active, but I never had to work at maintianing my weight.

Shortly before I became pregnant with my fourth child, I developed severe anxiety and panic attacks. I was put on benzodiazpines which relieved most of my anxiety symptoms. After I gave birth in February 2004, the weight quickly began to fall off but I noticed I was fatigued most of the time, I associated this with being a new mom again and having 4 children to look after. I also had no libido, and when I mentioned these problems to my doctor he said it was normal hormonal chages after having a baby.

In September of 2005, we were moving into a new house and I noticed that I was having a difficult time carrying even the lightest boxes and I had also developed very large supraclavicular fat pads. I had also gained 45 pounds over a four month period even though my eating patterns and activity had not changed. My fatigue was getting worse and my libido had still not returned. I was having hot flashes and night sweats,my face shape was beginning to change, my anxiety became worse and I was feeling depressed. I made an appointment with my primary care physician and was told that I need to go on strict atkins diet and to excercise regularly, then I was handed a prescription for Lexapro.

By 2006 I was excercising religioulsy, counting every calorie and resorted to diet pills. Then I began experiencing joint stiffness, pain, nausea, and recurrent yeast infectons. I made another appointment with my OB / GYN and was told I was getting older and my metabolism was slowing down - I was only 33. My other symptoms were dismissed and never addressed. By mid 2006, I had ramped up my exercise regimen and developed shin splints. I also almost overnight devloped a severe case of heartburn, it became so bad I had to sleep sitting up. After another visit to my doctor I was given Nexium, which did little to help. By this time, despite dieting and intense exercise I had only lost 25 pounds. My abdomen was so round and flabby, I decided to have a tummy tuck with full muscle repair. I was able to maintain this weight loss for about 7 months, then it all quiclky piled back on. By January 2007, I was no longer sleeping at night, however I was sleeping almost all day, I developed edema in my legs and hands, I sweated profusely and spontaneously, and my libido was nonexistent. I went back to my OB / GYN and was given diutetics, more antidepressants, and birth control pills, even though my tubes were tied. I was told, at the age of 36 and no previous reproductive health issues, and 4 healthy pregnancies, that I had PCOS. It seemed like an odd diagnosis for someone with my history, normal laboratory findings and no cysts found on my ovaries via ultrasound, but I trusted my doctor and continued to follow his plan.

Over the year, new symptoms began arising; I developed persistant diarrhea, a severe skin rash accompanied by urticaria, migraines, menstrual irregularities, breast enlargement with constant tenderness, plantar fascitis, recurrent upper respiratory infections, low back pain, dry itchy thin skin and new stretch marks. I was having memory lapses, forgetfulness, irritability, flushed face and neck, excercise intolerance, abdominal pain, throbbing flank pain, extreme sudden crashing fatigue, difficulty concentrating, trouble finding words to express myself, acne, chronic sinus infections, a hump on the back of my neck, kidney infections, high blood pressure, periods of rage followed by inconsolable crying, and frequent burning headaches. I went back again to see my OB / GYN and was told there was nothing wrong with me, except that I had PCOS. I decided to get another opinion. After spending about an hour with my new doctor and going over each of my symptoms, she said , "I think you may have Cushing's Syndrome". I immediately went home to begin research and identified with each and every characteristic of this disease. It was a relief to finally feel validated and to have someone believe that, in fact, I was not well. She ordered a 24 hour UFC, which came back at 44 (upper limit 50), but we both were not ready to give up on this diagnosis.

I was sent to a local endocrinoligist for further evaluation. I had made a binder with my medical history, symptoms, before and after pictures, and lab results I had done over the last year. He came into the room, and before examining me or seeing any labs, told me "You don't have Cushing's Disease, you have psuedo- Cushing's caused by insulin resistance." I asked how he knew this and he replied, "Because it's too rare and too hard to diagnose." I asked him to take a look at my before and after pictures, my stretch marks, my fat pads and my humps, he then conceded it could be a possibility but highly doubtful and to not waste my time researching Cushing's. He gave me a presciption for Byetta injections and I was able to talk him into giving me a lab requesition for a midnight serum cortisol. The Byetta injections did nothing for me, but my midnight serum cortisol came back at 9.3 (range <0 -3). He declined to see me again and I promptly made a phone appointment with Dr. Ludlam in Seattle after reading some of his articles on Cushing's Disease.

During this time, my life became almost unbearable. I could no longer do the things I used to do. Each and everyone of my symptoms worsened. I would sweat so profulsely that I could not put make-up on (which is pretty important to us southern women). Climbing stairs became a daunting task, my muscles became so weak that I could not lift laundry baskets, or lift loads of clothes to the washer or dryer, I couldn't open jars, climb on a step stool, my legs would become fatigued when I tried grocery shopping I couldn't push the cart, I couldn't hold the hair dryer long enough to dry my hair, standing for even short periods of time made my lower back ache terribly. I couldn't push the vacuum cleaner or mop, using the bathroom was difficult because my legs were too weak to stand up (and using a public restroom was impossible since I no longer had the strength to "hover"). Climbing into my bed or getting up from a chair required help from my husband, even lifting my binder I had made for my medical information took the effort of both arms. Most sadly though, I couldn't pick up and carry my children to bed or to give them a hug. I couldn't sit on the floor to play with them because getting back up required more strength than I had.

More symptoms began to appear such as hair growth on my face, I developed infections with high fevers, my scalp, neck, and face were extremely oily while the skin on the rest of my body flaked off with ease. I had excruciating joint and muscle pain that left me bed bound for days, muscle twitching and tremors became severe, I was gaining more weight although I had persistent nausea and no apppetite. I became socially isolated, depressed and apathetic. My quality of life was failing quickly and my marraige and home life was under so much strain. I couldn't attend school functions with my children, cook meals, or just enjoy spending time with my family. Many days, I felt as if I just couldn't go on feeling so sick all of the time. I even had to suspend testing for Cushing's for 8 months because I was so ill with infection after infection and unbearable pain.

Once I was finally feeling as if I could test, I began getting some high numbers on my ACTH, serum cortisol, salivary cortisol, and most importantly 24 hour urinary free cortisol collections. I had some that were low, and I had some that were extremely high. I realize that some doctors do not believe in cyclical Cushing's, or that you can have high 24 hour UFC's interspersed with lows. I firmly beleive that one can have some lows along with some high results and still have Cushing's Disease. I believe this is a direct indication that pituitary tumors can cycle, or turn on and off, just as every other endocrine system in the body does.

I am grateful to finally have a firm diagnosis and am preparing for surgical treatment to remove my tumor. I am ready to recalim my life and return to being the mother and the wife I once was. This disease has the ability to destroy so many aspects of one'e life. The fight to prove your diagnosis and recieve the treatment is long and arduous, but in the end it's worth every ounce of energy you can invest to prove, it is, afterall, "all in your head".

Labels: bios, Jada, pituitary

Lisa-Lee Dark is related to two of the most famous women from the last 200 years. Adelina Patti (1843-1919) who was the most famous and wealthy opera singer of the nineteenth century. She was a mega-star before the term was ever invented by media tycoons a century or so later. Even today, it is still no exaggeration to regard her, still, as a phenomenon. Adelina was probably the first female singer to ever record her singing voice onto a record, back in 1904. Bette Davis (1908-1989) wasn’t only related to Lisa-Lee, she was also her God-mother. Bette was known as ‘The Fourth Warner Brother’, & was one of the most successful & greatest actresses of the twentieth century.

lsa-Lee has had an extremely difficult life. Growing up there were problems at home due to drink, violence & money troubles. Lisa-Lee would walk the streets to get away from the troubles, but this only brought more problems, because she was badly abused by a paedophile ring / group, although she says that the majority of the abuse was physical. Lisa-Lee also got very badly bullied in school, she would get kicked, punched, spat at (in the face), have bricks thrown at her, get hit with sticks & have obscene things screamed at her on a daily basis.

These weren’t Lisa-Lee’s only problems, as she was brought up a boy because of a rare medical condition called ‘congenital adrenal hyperplasia’ (CAH). This happens because the foetus is over exposed to the male hormone, testosterone, & in some severe cases, like Lisa-Lee’s, the over exposure to the male hormone leads to fusion of the female genitalia.

The female organ is then enlarged, so it looks like a male organ & it is then easy to mistake new born girls for boys. As a youngster Lisa-Lee was told that if she took more of the male hormone, testosterone, she would be able to stay male ( as she believed herself to be), but that was untrue & all it did was make her wider, have more than half her hair fall out, & make her gain an extra 6 stone (84 pounds) in weight, but Lisa-Lee is now trying to lose the weight & accept herself.

Lisa-Lee’s only refuge was her music, acting & writing. Her career began very young, she first got spotted singing in her local park aged only 6, but due to shyness it would take her 3 years to build up enough courage to go into the recording studio. Lisa-Lee began singing classical songs & by accident got into singing dance music. Lisa-Lee has sung on dance records that have gone on to sell over 10 million copies world wide, & has sung lead vocals for the new age, Christian, classical cross over group New Era, who have sold over 6 million albums, making Lisa-Lee one of the most successful Christian singers in the world. Lisa-Lee is also regarded as one of the most successful session singers of the 1990’s. Lisa-Lee has also had some acting success, but only as a voice over artist.

All this work never brought Lisa-Lee any great wealth, but she earned enough to put herself through college & study her main love, music. Lisa-Lee has a 7 octave range, she used to have a 9 octave range, but since beginning her opera career in 2007 she has lost 2 octaves from her range. Lisa-Lee was a self taught singer until quite recently. Lisa-Lee began releasing records as a solo artist in 1999 & has had moderate success, but it’s all been to get her ready for her opera career. To date Lisa-Lee has starred in 5 opera performances. Three Puccini operas, 'Turandot', 'Sr. Angelica' and 'Madama Butterfly'; Lisa Lee has also starred in 2 Verdi operas 'Rigoletto' and 'Nabucco'.

The opera critics have been saying that Lisa Lee has one of the most beautiful voices in the world. The opera company that Lisa-Lee is signed to were so impressed with her vocal talent, they signed her straight away to their opera house and record label. Lisa Lee signed a £2.5 million deal with them.

Lisa-Lee has been busy promoting her debut opera recital album, titled, 'Sola, perduta, abbandonata', which means 'alone, lost, abandoned'. This album got released early in 2008 and to date it has charted on the opera / classical charts in the EU,also released a special limited edition album, titled, 'The screen behind the mirror'. This album contains Lisa Lee's debut opera recordings and her audition for the opera company. This album has also been successful in Europe having charted in 8 countries. Lisa Lee will release a new album titled 'Almost nothing', in April 13, 2009. This will also be released in the states and the rest of the world through out 2009.

Labels: adrenal, bios, CAH, LisaLee

I am a 59 year old female.

I was diagnosed with an adrenal tumour 15 months ago, then eventually diagnosed with Cushings and the adrenal gland and tumour were removed in July 2008.

At the time of surgery it was found that the other adrenal gland was not functioning and I am now therefore hydrocortisone dependant and classified (I think) with secondary addisons.

I suffer from various cushings problems such as high blood pressure and osteoporosis. I am just beginning to manage my medication but am finding the problem of firstly suffering from Cushings to suffering from Addisons very difficult to cope with - one extreme to the other.

I would really appreciate any advice anyone can give me who is suffering from a similar problem.

Email Leslie

Labels: adrenal, bios, Leslie

I am in the middle of being diagnosed with pituitary cushing's.

Up until today all of the test results had come back very definitively pituitary but today I just received word that the sinus cavity one came back ambiguous - very non-definitive. So my specialist is going to send me to another specialist who is considered to be the expert in this area.

I am 45 years old, turning 46. I have 2 children (9 and 11) and am married. I am a lawyer and my partner is a professor at our local Universary. We live on 5 acres in the country and have 5 dogs, 1 bird, 3 fish, and 1 lizard.

I have been off work since June 30, 2008 and am finding it very difficult to be patient with this illness.

Update March 24, 2009

this is an update to my previous bio.

I was ultimately diagnosed with pituitary cushings and was operated on by Dr. Akagami at Vancouver Regional General Hosptial on March 3, 2009.

I am now in recovery.

Email Elisabeth

Labels: bios, Elisabeth, pituitary

Health History

October 1960 Born 1-month prematurely, little pre-natal care (I'm adopted)

Early Childhood - German measles, mumps, whooping cough, croup, ringworm of scalp

7th – 8th year Pneumonia several times, developed asthma, hay fever

10 years - Onset of menses

14 years - Chicken Pox

17 years - Pneumonia, onset of depression (not diagnosed)

19 years - Started getting migraine headaches

21 years - First child born, son, toxemia

23 years - Birth of daughter, mastitis, endometritis

26 years - Miscarriage; notice bruise easily

27 years - Pregnancy, gall bladder disease, removed during 7th month of pregnancy due to pancreatitis; second daughter born in October

28 years - Severe asthma attack, hospitalized

29 years - Birth of third daughter; onset of anxiety and panic attacks. Skin tags appear, severe fatigue and body aches begin

33 years - Hysterectomy due to excessive periods, enlarged uterus

38 years - Severe depressive episode due to divorce

43 years - Bunionectomy; broken toe; wounds heal slowly

44 years - Increase in fatigue, memory / concentration loss, muscle weakness, night sweats

46 years - Right lateral epicondylitis release, major weight gain, severe water retention

46 -48 years- Onset of hypothyroidism, Hasihmotos disease, sleep apnea
Type II diabetes, hypercholesterolemia, gastric reflux, insomnia, Cushing’s disease

March 2009 - age 48 - Diagnosis of Cushings disease, pitutitary source by Dr. F. I have plenty of high salivary cortisols, need one high in urine or blood and then Dr. F. will clear me for surgery

Email Christina

Labels: bios, Christina2, diabetes, pituitary

Diagnosed after more than 20 years of trying to find out what's wrong.

Hashimoto's Thyroiditis - diagnosed 2000.
Unstable Hypothyroidism - diagnosed in 1994, but changed in 2006.
Hyperparathyroidism - diagnosed in 2006 although blood work showed problems in 2000.
Hypocalcemia - diagnosed in 2006 although blood work showed problem in 2000.
Severe D deficiency - D is a hormone, not a vitamin. Diagnosed in 2006.
Adult GH Deficiency - diagnosed in 2006 although blood work showed problem in 2000.
Cortisol levels always just under the cut off for Cushings Disease.
Pituitary Tumor in MRI 2009.

bones in my feet were fracturing when I walked by 2006. Standing, sitting, lying down is quite painful. Now there's severe pain in my vertebrae -- same as my feet 3 years ago.

Chin whiskers, loss of more than 2/3 of scalp hair, and pubic like hair growing on legs. Severe migraines which produced nausea and vomiting stopped with treatment.

Email cris

Labels: bios, cris, pituitary

Hi there!

I'm new to the site, and quite frankly, new to Cushing's Syndrome itself. Over the years I have been having what seemed to be a lot of unrelated symptoms, which are now escalating in intensity. And like most of you I have been from doctor to doctor trying to figure out what’s going on, with no success. What I find really scary is I’m now seeing uncanny similarities to the mystery illness that took my mother’s life. Out of frustration I’ve turned to the Internet for answers; starting by putting in different combinations of symptoms in hopes I would stumbled on to something conclusive.

It might seem pretty logical now, but I have been in a fog both literally and figuratively, never really looking at the “big picture", since some of my symptoms were vague and generalized. Edema, hair loss, uncontrollable weight gain, etc., etc., etc.. Put those symptoms in and you get hundreds of different possibilities. And truth be told I had come across Cushing’s before, but I wasn’t convinced that was my problem. However, while surfing last night it occurred to me to include some family health oddities into the mix to see what I could come up with. The first one I started with was Adrenal Hyperplasia, and Bingo! I hit sight after site that described me, my mother, (dead at 61), and my niece (dead at 9), and I knew this was it.

So People of the Boards, where do I go from here? Over the years I have gone to two different Endocrinologists seeking answers, but because I have Hashimoto’s (Thyroid) Disease, both were convinced there was nothing else wrong. I am incredibly tired of wasting my time with doctors who are completely dismissive, and don’t take the time to look any closer than a few symptoms.

I’m turning to you, hopefully for some answers. If anyone knows of a competent doctor in the Huntersville/Charlotte, North Carolina area familiar with Cushing‘s, would you please respond?

Thanks for being here,
Xchicagoan

Email Xchicagoan

Labels: bios, not yet diagnosed, Xchicagoan

52 yr old woman from Sidney, BC, Canada (Vancouver Island) -

I had a kidney stone attack in Sep 09 and was sent for a CAT scan. This showed tumours, one on each adrenal gland. When my GP saw these results, the lights came on, because of my previous symptoms, he was able to determine that I had Cushings and set me for tests to confirm. My cortisol was very high, confirming Cushings, and he referred me to an endo.

An ACTH suppression test came back as low/normal which indicated that there was possibly another tumour. I was sent for an MRI that showed a 2 mm tumour on my pituatary. After further consultation with his peers, my endo feels that I may have a rare case of Cushings where the adrenal glands have decided to ignore the pituitary gland and are independently producing cortisol. They all agree that the first step to a cure would be to have the tumour removed from the pituitary.

I saw the surgeon on 2nd March and will probably have the surgery in two months time. In the meantime, I have been taking Novo Ketoconazole for the past month and already my cortisol levels have dropped dramatically.

This is great news, since one of my Cushing's symptoms is the inability to heal and another is the susceptibility to infections. Hopefully my immune system will be recharged by the time surgery rolls around.

My endo thinks there is a possibility that the adrenals may not have tumours but merely enlarged from being overworked. If this is the case, the removal of the pituatary tumour could cause them to shrink on their own.


Email Maryanne

Labels: adrenal, bios, Ketoconazole, Maryanne, pituitary

In 2002 I was an Air Traffic Controller in the United States Navy. I had graduated top of my class as the honor graduate and I was the only female in my class. I had also been one of 4 people and the only female, to win an award upon completion of boot camp and it was presented to me by the Master Chief Petty Officer of the Navy. According to all my evaluations I was "a rising star" and "expected to do great things". I was stationed at Naval Air Station North Island which is a base located on Coronado Island across the bridge from San Diego in southern California. Things were going well for me and then all of a sudden it all fell apart. I started to get very ill, I gained an obscene amount of weight in a short period of time, suffered from insomnia, anxiety, uncontrollable bowels, constantly irritable, excess facial and body hair growth, stopped menstruating, paper-thin skin that bruised to the touch, brain fog, a round face, sunken in eyes with bags under them, and though I went repeatedly to medical, they told me and I quote, "Quit smoking, quit drinking, dump your boyfriend, and go to the gym" and that would resolve my problems... Well it didn't, I got worse. It affected my work and every aspect of my life. I was constantly being told that I was not sick, it was all in my head and that I needed to be seen by psych and be put on anti-depressant medication. Being in a career that was mostly men I suffered constant comments and criticisms and even ate my lunches in the women's locker room because I was embarrassed and ashamed of my appearance. I was treated even more poorly by the women I worked with and my superior officers who were cruel and didn't take my symptoms seriously. When I really started to get worried about my health was when one day I was in the shower and looked down at my stomach and noticed these horrible purple marks all over my body. They had just appeared over night. I went immediately to medical and asked to see a doctor. I showed her the marks and she looked at me like I had a screw loose and said, "Um, those are from being pregnant. Have you ever had children?" To which I answered, "Not that I am aware of! You have my medical records, you know I have no children! What is going on!" My mum, who was worried about me, came down to visit me from Seattle and when I picked her up at the airport she didn't even recognize me I had changed in appearance so much.

Finally, a doctor by the name of Lt. Graves showed up at North Island right out of medical school and took one look at me and was certain I had what was called Cushing's. She had remembered reading about it in med school.

She saved my life.

All it took was one blood test and I was diagnosed. I had a tumor on my left adrenal gland that was causing my left adrenal gland to over produce the hormone cortisol.
I was diagnosed but they waited 2 months to get me in for surgery and during that time my weight jumped dramatically from 180Lbs to 239Lbs and I was sicker than ever. I was now so large my uniforms no longer fit and when I filled out a request signed by my doctors to wear civilian clothing it was denied by my chain of command. I finally had to submit a request for maternity uniforms and had to wear them to work and everywhere on base even though I was not pregnant. I smoke cigarettes so every day I had to suffer the glares and threats of other members of the military who didn't know my situation saying that I was a child abuser and a horrible person. I It was so hard and really took a toll on me. It didn't help when I told people it wasn't a baby it was a tumor. They thought I was a bad person. I didn't want to get up in the mornings anymore. I wanted to hide under a rock and disappear.

Finally in August 2003 I had an adrenalectomy at Naval Medical Center San Diego and they took out the left adrenal gland and the tumor. The surgery was supposed to take 4 hours but ended up being over 9 and there were complications. Another team had to be called in due to the trouble my surgeon was having and the fact that I was so filled with this hard lard-like fat they had difficulty getting at my adrenal gland. I was treated horribly in recovery, and unless my mother was there I was ignored by the staff and luckily I was sharing a room with an officer's wife who was able to summon the nurses for me because they didn't respond to my call button when I needed help to get to the bathroom. It was horrible. Two days after coming home from the hospital I had what I thought was a heart attack and I actually was in so much pain I told my mother I was dying. She called 911 and the paramedics came. They dropped me twice getting me on the gurney and were rude and made comments about my weight. I was rushed back to the hospital to find that I was almost septic from all the pain medication I was taking.

I also had hernia repair surgery in February 2004 and now I have titanium mesh secured by titanium screws covering the entire inside of my abdomen. It really freaks out x-ray technologists if I don't tell them beforehand.

I started to get better and the weight was just falling off but then I stopped recovering and began to decline in health. The Navy doctors still found nothing wrong and told me I was "malingering" but my mother knew there was something else going on with me. I was seen by psych again and placed on anti-depressants again. They tried all of them but nothing helped. The Navy at this time was now trying to get me discharged because according to them I was no longer fit for service. So I was not only fighting to get treated I was fighting to prove my medical situation to a board of officers who had no clue what I was actually going through.

We went to see Dr. James Webber in San Diego and he diagnosed me with Hashimoto's Auto Immune Thyroiditis. He also found that my right adrenal never started pulling it's weight and diagnosed me with Adrenal Insufficiency as well. He started me on Armour Thyroid and Hydrocortisone. I started to slowly feel better.

So after years of trial and error of medications and going to a ridiculous amount of different doctors, I was finally starting to feel better, but the damage caused by the rapid weight gain and weight loss turned my skin into a stretched out mess! I was promised, and its written, in my medical record that I would receive re-constructive plastic surgery to repair the damage caused. But after I had an abdominoplasty and umbilical hernia repair surgery in 2005 the Navy decided that I was unfit to continue my contract and tried to discharge me without any disability.

I fought them tooth and nail with the help of my new division officer, Lt. Candace James (my hero), but still ended up with a pathetic 30%. I took my records and ailments to the VA and they gave me 70% which is better than 30% but they still didn't include all of my issues... I will continue to pursue all avenues to rectify this situation. I did not go to war in the traditional sense over in Iraq, but I feel that I fought my own war and my enemy was not only Cushings but those very people who were supposed to be keeping me healthy and safe. It is a war for my health and my life that I am still fighting.

When I moved back home to Seattle in late 2005 I had to find a new doctor and I looked all over. I went to many who actually had the nerve to tell me, "Wow, you sure have a lot of issues, are you sure you actually have all these things?" Having retired military insurance is affordable but most doctors, don't accept it, as they don't get enough money from the insurance company. So it took me years to find doctors that would see me with this insurance. Seeing a traditional Endo now instead of Doctor Webber I was taken off the Armour Thyroid because my new doctor doesn't agree with that method of treatment and placed on Levothyroxine and Cytomel. As well as adding Fludrocortisone and changing my dose of Hydrocortisone. I take Lonox and Hyoscyamine for my IBS. I had gone to the ER when I had an IBS episode which they misdiagnosed as shingles of all things, even though I had no symptoms of it, and when I gave my Medic Alert Card to the woman who checks you in, she said to me, "I'm not writing all this down! This is too much! You can't have all these things!" I explained to her that she had a copy machine and didn't have to write it all down. She could just make a copy. But the bad treatment continues everywhere I go it seems. Even with a diagnosis and surgeries completed, they still doubt my illnesses. It makes me sick.

I am now retired, and when I tried to get my plastic surgery through the Naval Hospital they told me I had to "pay out of my pocket" because I was no longer active duty... how convenient... So I submitted it to my insurance time and time again and they kept denying it, saying "it was cosmetic and I could live without the repairs..." well yes, but not comfortably, and if they had paid attention to my symptoms and not ignored my health conditions I wouldn't have gained 100lbs and needed re-constructive work done in the first place!

So thankfully my grandmother and parents made it possible for me to begin the repairs November 2007 and I had part two July 31 2008. I was finally back down to size 29 in jeans and I was feeling great! Although its not all fixed. I have had every possible treatment for my stretch marks that are up to 1/2 inch deep in places, making me look like I gave birth to a litter. I look like I have been mauled. Nothing has helped from laser treatments, to supplements. I wish that they had payed attention to my symptoms and they never would have happened.

In November of 2008 I started working for UPS as a seasonal driver helper for the Christmas rush and I was on my feet 14 hours a day hauling packages up and down driveways and stairs and it was really strenuous and active work. Everyone I worked with lost anywhere from 10-25 pounds this peak season because we were so busy and when I went to put on my new jeans my mum had bought in October for my birthday I found I couldn't pull them over my hips. Thinking this strange since I was so active and had just had a ton of reconstructive surgery done, I went to my primary care physician who weighed me and I found I was up to 171lbs. Now I know that that is not acceptable for me. I was weighing between 155-160lbs after surgery and swelling and to jump up like that was not okay. It should have gone down to 145-150lbs after the swelling decreased and since I was so active. She told me I was being silly and even knowing my history with Cushings said to me that all women gain weight as we get older... the same stuff I heard back in the Navy when no one was listening to me! I am 28 years old! I hardly call that "getting older". I was finally able to get in for an appointment with my Endo here in seattle in February 2009 and when I got on the scale I was 176lbs. I had gained 16lbs since I saw him pre reconstructive surgery, which included liposculpture so I shouldn't weigh more after the surgery than I did before it. My face has started puffing out and I have dark circles under my eyes. My skin is dry and cracked on my hands and feet and no matter what kind of shampoo I use, I have flaky dandruff that wont go away. I am irritable and anxious. I am lethargic and exhausted all the time. I never feel good and I wanted him to tell me what was going on. He ordered blood work and a 24 hour urine test which I completed and I am now waiting for the results to come back.

When I was in the Navy I asked about a possible reccurence and they told me again and again that I couldn't get Cushings again but the more I research it and talk to people the more I feel that they didn't have a clue what they were talking about. My two scenarios are possibly a reccurrence of Cushings or my right adrenal gland is finally starting to work and I and I am having Cuhings-like symptoms due to too much steroids. Right now I am so frustrated and worried. I don't remember being 23 or 24 due to all my medication and the fact that Cushings ruins your memory. I know Cushings took my 20s and I don't want it to take my 30s as well. I have recently applied to be an Air Traffic Controller for the FAA and I don't want a relapse to ruin my chances of this wonderful career again like it did back in 2002.

Since it didn't have my other diagnoses listed above I thought I would include them here. Maybe others have had the same issues I have? Maybe I can help someone?

History of Cushing's Syndrome, Adrenal Insufficiency, Hypotension, Hypoglycemia, Hypothyroidism (Hashimotos Disease), Hiatal Hernia (GERD), Abdominal Hernia Repair, Umbilical Hernia Repair, Urinary Tract Infections, Irritable Bowel Syndrome (IBS), Kidney Stones, Hematuria, Insomnia, Chronic Back Pain, Neuropathy, Motion Sickness, Tinnitus, Mycoplasma Pneumonia, Sacroilitis. I was a very healthy person before I got sick... I don't know why this happened to me. I want it to go away. I want my life back.

Thank you for letting me tell my story. It has been a long hard journey and a very lonely one. I am glad that I am now able to share with others who actually get it and know what I have gone through. I will keep you updated as I get my results.

Mahalo.


Email Jen

Labels: adrenal, bios, Jenny, steroids

My bio, my name is Gail Jacka, and my nickname is Dolly.

I was originally diagnosed with Cushings in 1988. At that time I had a pituitary tumor removed. I was okay for about 10 years, and it occured again. My tumor was removed, as well, as my pituitary glands.

In 2003, it reoccured, and I had adrenal glands removed. I am now experiencing all symptoms again, last lab work performed, on 2/17/09. Results showed ACTH level at 482. Endo MD is puzzed as I have no glands, and have undergone radiation.

I am scheduled next week, to have MRI and imaging done. He thinks maybe I now have Nelsons Syndrome. My question is, if I do have Nelsons syndrome, and there are tumors on the lung, are they cancerous, or benign as in other tumor history?

If so, what is the treatment for this? It has been a long battle because of the Cushings, over 21 years, and it has effected my life dramatically.

Email Gail

Labels: adrenal, bios, Gail, Nelson's Sundrome, pituitary

I am a 54 old wife, mother and grandmother.

I have been terribly ill for 17 months with adrenal insufficiency and a prolactinoma. I do not know yet if it is a nonfunctioning tumor or not, but I suspect so since I do not have any of the Prolactin symptoms. I will be evalutated soon for that.

I have gone the whole nine yards at Vanderbilt University Medical Ctr in Nashville recently. This is after 17 months of hell and seeing doctor after doctor. No one would listen to me.

Last July I think I was actually dying and was probably in adrenal crisis. I had hypertension and hypotension epsisodes with two ER visits with extremely high blood pressure and stroke symptoms. I was seen by many doctors who were all headed in the wrong direction. I was basically told it was female problems, stress, menopausal, etc. etc....you know the routine..many have the same story.

However..mine has a twist. I was so desperate for help I went to see a Mennonite Naturopathic healer in Kentucky. His name was well known of helping so many people. He not only seen his Mennonite Clan but also saw many "English" as we are called. He does Iris Iridology. This is a very old time practice that is about faded away. It takes years to learn and I suggest if you go to one make sure they have done it for years.

He looked into my iris with a small eye magnifying glass. He told me all the problems that I have been diagnosed for years, Fibromyalgia, IBS, Sleep Apnea, Insomnia, hypertension, hypotension, digestive disorders, and early pancreatitis. Now this was different than the doctors as my sister told me NOT to tell him any symptoms at all, much unlike the conventional doctors who heard all my symptoms. Then he really shocked me when he told me I had adrenal problems and something wrong with my pituitiary!!!!! He gave me natural medicines that helped some but I knew it was not the final ending to this problem.

I went back to my FP at the time and told him my horrible symptoms of flushing, anxiousness, nausea, dizziness, digestive problems, inflammatory pain etc, etc. He finally checked my norepenephrine levels were 624! He then did a MRI of my adrenal glands.....negative.

But then he went back into the service and left me holding the bag...no referral no recommendations. I was ticked. I had to search for a new FP on my own. Finally I found a FP in my own county that everyone said loved a challenge. He thought I had a carcinoid tumor or an adrenal tumor.

After blood tests showed several things he sent me to Vanderbilt. After my first appt. they tought the same thing. However tests revealed that my cortisol was lower than a 1. Barely registering. No wonder I was so ill. They did a MRI of my pituitary and found a 6 mm tumor..suspected to be a Prolactinoma.

So the Mennonite man was batting100%, conventional doctors 0%. Well, I know I still need conventional doctors so I can't beat them up too much.

However...why is it so hard to get doctors to listen...even my regular Endo missed all this last fall even though he suspected orthostatic hypotention? Men doctors are horrible, particularly for not listening to women and labeling them hysterical depressive menopausal ninnies!

Would love to hear from others please about their experiences too? Meds or surgery for Prolactinoma...what worked for you?

Email LaDawn

Labels: adrenal, bios, LaDawn, prolactinoma

About 2 and a half to 3 yrs ago, i was being treated for a condition called Reflex Sympathetic distrophy.

While they were treating me, they were injecting me with steriods. And from that symptoms started showing up that had nothing to do with my rsd condition like; the red moon face, the obesity, the irregular periods, and the striae marks.

Due to the VA ruining all the tests they did, about 6 months later i was rushed to the hospital near death, when the doctors at the hospital did the tests they discovered that i had cushing's syndrome and that i was lucky to be alive.

I am now cured of cushing's however i still the striae marks all over my body and am still somewhat fat. I am afraid i could get sick again and am very self concious about my body.

Email Stephanie

Labels: bios, Reflex Sympathetic Dystrophy, Stephanie, steroids

It all started when I got my first period in grade 8. Ever since, my menstrual cycles were very irregular, coming every 4-5 months (Once I skipped 9 months). Despite this, I was happy and felt healthy, exercising on my tredmill everyday and eating a healthy diet.

In 2005, my parents were concerned about my irregular periods so I went to see a GP who then got me a referal to see a gyno. The gyno told me that it's perfectly normal to have irregular periods (then WHY she prescribed me birth control pills, I'll never know). THIS is where the symptoms started popping up- right after I took Yasmin birth control pills for about a month. I was moody and gaining weight so I stopped taking Yasmin.

I then tried to take the weight off by exercising, but something was different. The more I exercised, the more I gained weight. I was constantly bloated and my cheeks were getting bigger. I drank more water, thinking I was dehydrated, but that wasn't it. If anything, drinking water made my edema WORSE.

I started getting significant changes to my bowel movements where I went back and forth from severe constipation to severe diharrea. A gasto. told me that I have a MILD form of IBS?! He did nothing but a routine checkup and told me to eat more fiber. Even though I never changed my healthy diet regime, I ate more fiber (which made no difference in my bowel movements).

I went to countless GPs who got me to do countless blood and urine tests which all turned out normal. I was gaining weight like crazy and my face was getting bigger. I was CONSTANTLY bloated and my body started to change shape. My legs and arms were noticeably getting thinner, and my torso looked like it was getting shorter and fatter. I was slowly forming a "double chin", and my skin got ALOT darker and dry. Now, my face is always oily and my hands are constantly sweating. I still have irregular periods and "mild IBS".

I'm noticing that I'm falling deeper into depression as I am getting more desperate to find a diagnosis. Hairs are starting to grow on my face, and my hair is very dry and coarse. My jaw seems like it's growing wider (probably my jaw bone). I'm starting to get shooting pains in my head area which gets worse when I lie down. I can't concentrate in school, and I feel like dying is better than living like this.

In my three years of researching my symptoms online, I am certain that I have pituitary Cushings Disease.

If there's anyone in Calgary or anywhere in Alberta that can help or want to share your thoughts, please e-mail me.

Email Jenny

Labels: bios, Jenny, not yet diagnosed, pituitary

Not a Cushie but just diagnosed with (ICSR) Idiopathic Central Serous Retinopathy today. The C-H website gave me more info on this condition than my doctor did.

I never dreamt that being a type-A over-exerciser could give me my very first medical problem.

I don't wish to be a distraction to those suffering from much more serious problems but I would be pleased to learn from anyone experiencing vision loss resulting from CSR (idiopathic or otherwise).

Thanks and best wishes.

Email Barry

Labels: Barry, bios, ICSR, Idiopathic Central Serous Retinopathy

ARGH!!!

The weird symptoms had been going on for years. I can't complain about most of my doctors...they did, for the most part, take my compaints seriously. But, the "red herring", a serious accident that caused permanent spinal damage, allowed everyone (even me) to explain away symptoms that probably should have been more carefully explored. Trouble walking? Nerve damage. Weakness? Same thing. Diabetes? Surgical trauma. Round face, loss of scalp and body hair, excessive facial hair? Beats me! Fatigue? Diabetes. Stress fractures? Caused by uneven gait due to nerve damage. The list goes on and on. Another problem was that I never gained enough weight to attract attention, although that was the issue that originally brought me to the doctor. Her reply? You are still within a healthy BMI. Just try not to gain any more. My teen daughter's response to this was that if she ate like I had started to, she would be anorexic and I would have her in an eating disorder clinic! When I complained to friends about mental lapses, they said they were the same and attributed it to perimenopause. When I said my periods had stopped years ago, their reply was, "lucky you."

Finally, a young doctor who was substituting for my usual GP saw me to renew one of my ever-growing list of prescriptions. She asked a lot of questions, and finally asked if I had been tested for Cushings. I had never heard of it. She wrote to my usual doctor, who started the diagnostic process. And there it was. First, they attempted to remove my pituitary. Got most of it, but couldn't safely remove it all. Things improved for awhile, but it seems the remaining portion has a tumour in it too. My neurosurgeon considers additional pituitary surgery too risky. So, it seems my adrenals are next to go. This will happen next month. Quite frankly, I am terrified. I am well known among my family and friends as a cheerful and optimistic person, but I must admit I'm finding it difficult to keep up the act this time, especially around my adolescent children. Teens with access to Google are a dangerous thing!

Does anyone have any advice? Thanks.

Labels: adrenal, bios, Brenda, pituitary, surgery

My name is Christina, and I am 28 years old.

As long as I can remember I have ground and clenched my teeth. I was always a little chubby and was suspected of having a growth hormone deficiency when I was a child. I had some growth hormone so my parents chose not to give me the injections.

I spent my teens and twenties drastically cutting calories, eating low carb, taking diet pills, and exercising to lose weight. Taking drastic measures I was able to lose weight until I was 26. All of the sudden I was depressed, developed a lipoma, and gaining weight.

I knew I needed to make some changes. I quit smoking, drinking, and ate a diabetic diet. I worked out everyday for no less than 60 minutes. With no weightloss, I went to the doctor and he diagnosed me with depression. Went on cymbalta and felt happy, but it made me gain more weight. I also made my already horrible insomnia worse.

However, I knew something was wrong. I thought I was hypothyroid. I read all these boards on subclinicial hypothyroidism and was convinced that's what was wrong. I had an endo test my growth hormone and the stim test showed that I had more growth hormone than he has ever seen. I am only 4'9". I guess I never received the benefits of all that GH.

In march I went of the antidepressent and I hired a personal trainer. I thought maybe these docs are right. Its all in my head. My therapist and my boyfriend told me to stop going on the internet to figure out what was wrong. I weight trained 2 days a week from March to Oct. I did cardio on the off days for no less than 45 minutes. Between this period I went from 139 poinds to 156 pounds. I was so frusterated!

My therapist recommended a doctor who combined holistic and conventional medicine. Right away the saliva tests said my adrenals were all screwed up. She put me on Bio-identical hormone therapy, vitamin D, iodine and adrenal support. I also started using light therapy for the depression. I felt 100% better with my moods. The only thing missing was the weight loss.

I have stopped the BHRT because of my cortisol levels, and all my symptoms are coming back. More weight gain, stretch marks, hair loss, acne, slight lip hair, depression, anxiety, and panic attacks! I am going to a new endo on March 20.

I feel this is genetic. My mom has the body type, the cholesterol, inability to lose weight, vertigo, hypertension, and the hump. I don't have all these symptoms, but I know its genetic.

Even if its not cushings, I know it has to do with my adrenals and cortisol levels. I cried when I read this website. I'm scared that I'm doing the same thing I did when I thought it was hypothyroidism and GH. I just know there is something wrong. Its not normal to gain 30 lbs in a year, especially with the amount of diet and exericise efforts I put in. I just pray the endo listens to me.


Email Christina

Labels: adrenal, bios, Christina, genetic, not yet diagnosed

I'm a 62 year old male diagnosis with Cushing Syndrome in Jan. 2005.

My doctor keep telling me I needed to lose weight because that was the reason I was so tired all the time, I tried but nothing worked,I just kept getting bigger but in a different way,moon face buffalo hump large purple stretch marks.

My wife kept going on the computer and put in somethings in the search and she came up with pictures of people that look like me and had Cushing Syndrome,made me called my doctor to have me tested for Cushings and sure enough I had it.

Went for CT scan and that is when they found the tumour. Before I was scheuled to have it removed I ended up in the hospital with blood clots in my leg and lung had to take care of that first then have surgury.

My surgury was on June 5,2005,and I'm still doctoring for it. I have been taking the cotisone pills up until 4week ago,the doctor would start weening me off of them and then I would crash and would have to start all over again.

On Friday Feb.19th,I had to go to the hospital for 3 blood test to see if my adrenal finally kicked in,I sure hope it has. The cortisone has done my body some damage. I have osteoporosis very bad.

Needless to said in 2005 I had to leave work on disibility retirement, and have,nt felt good since. I'll let you know my test results.

My Best To All,Joe

Email Joe

Labels: adrenal, bios, Joe, surgery

don't have a clue where to start.

after 2years of not knowing what was happening to me,i finally found a doctor who checked for cushings.and guess what? it sure wasn't diabetes,manapuase,depression,or all the other misdiaganoses.

now i'm just starting the long road to fix this.so i'll be on here reading all i can.

i live in the bonnies so they really have no clue what to do.i have to travel to another state just to see a doctor who has heard of cushings.

i'm so glad this site is here.thank you all for the welcome mat!

Email Frank

Labels: bios, Frank, not yet diagnosed

I am 49 years old.

For years and years, I had high blood pressure, extreme excess belly fat, excessive weight gain. I am 5 ft 3 inches, and kept gaining weight up to over 220 lbs. . . and I ate healthy and exerised.

I changed doctors and even though tests came back normal, she sent me to a cardiologist. He did a cat scan and by accident found a tumor on my adrenal gland.

I was diagnosed with cushings syndrome and type2 diabetes.The tumor was pushing on the adrenal gland and pushing out too much cortesol into my system.

July 19, 2007 I had Robotic surgery to remove my adrenal gland. I lost 80 lbs in 5 months.

There is hope and I am one of the lucky ones who came out of it pretty good!

Email Shawna

Labels: adrenal, bios, diabetes, Shawna

I started to have symptoms that were bad enough for me to see a doctor in Janurary 2008.

The diagnosis of Cushing's due to a pituitary adenoma was made after MRI in June of 2007.

My first surgery was in September of 2007. At that time, the suspect area of the pituitary gland was removed leaving me with 80% of the gland. My cortisol levels never dropped and I was scheduled for a second operation in October.

That surgery was aborted after finding a staph infection in my sinus. After a long course of antibiotics, another operation was scheduled for November. On that day, the surgey was aborted again and I was kept in the hospital overnight on IV antibiotics then went back to surgery the next morning. My pituitary was disected and an adenoma was found in the OR leaving me with the stalk, about 15%. My cortisol levels dropped some, to that of a "normal" person, but did not go low enough to be considered "crashed."

After much discussion with my primary neurosurgeon, (he's wonderful), I decided to go home and see what happened. My husband and I would like to have a child and shortly after surgery my period came back, so we took it as a sign to go home and see what happens.

Unfortunately, my remission was short lived. My cortisol levels are back up and the rest of my hormones have fallen off to0 the point of needing replacement.

I am now seeking the advice of a specialist to help us get pregnant and have a baby before going back for my fifth surgery!

Labels: Amber, bios, pituitary

Hi; My name is Sandy and I live in Holland, Michigan. I was diagnosed ( double tested thru Mayo Clinic,test were sent there)

Feb.8,2009. My story is very long so the short version for now. Back in 1994 I was in a bad car accident and had back injurys.

After trying pain pills, therapy, ect I went to a large Pain Clinic. After medications did't work they implanted a Morphine Pump into the spinal canal to control the pain. 2 yrs. pass,emergeny appt. with Pain Dr. found granduloma's on my spinal cord. In fact they mygrated 9" up the spinal cord, the spinal cord specialist took out all me could-or dared. He went as far as the lung nerve function would be affected. I've been on anti-inflamitory meds and Medro shots in the spinal cord dura since1997.

Fast forward.. I have been on tons of medication, lots of hospital stays...now everything makes sense.
There was ONE reason (I find out now) all this stuff was going wrong.

I'd really like to connect with others, expecially from Michigan!!! My e-mail is jsdewys@yahoo.com. I am not very computer educated. I know how to e-Mail and look things up but that's about it. The following is a long..list of my symptoms or problems that I have. In no paticular order.
Sleep problems
Purple stretch marks
Muscle spasms
Restless leg syndrom
Mouth gum recession
Mouth sores-Lichen Plantus
Back tissues swelling ( Buffulo Hump)
Falling Higher blood pressure than normal all of a sudden Lymphedema
Knee Pain Bursitis
Pubic and underarm hair dissapear
feeling Ill-flu like all the time
Cateracts
Slow healing
Poor veins, hands,arms
18" lg. bowel removed(died)
Foot Neuroma
Shingles
Stomach pain
Urination problems
Excess sweating-dripping wet
extream fatigue- muscle soreness
Bloated feeling
Facial Hair
Osterporis
Bruse easily
vaginal problems (dry-painfull sex)
Pain in forhead(middle)
Migraines
Darkening of skin
uncontrollible pain( Roxenol,morphine,dilidid didn't help)

Did the blood ,24 hr. urine, and salva test (send to Mayo clinic for diagnoses) done 2 times because my Dr. said,"you don't have that, quit looking up things on the net." My morning blood draw was 1.7micrograms. my night was 19 micrograms "

no wonder I can't sleep. My husband and son have been there 100% all these years. I have however lost the closeness of a mother/daughter relationship with my daughter. She thinks I'm nuts, faking + many more discriptive words.

Being diagnosed has been on "ah ha moment" being started on hydrocortisone is a roller coater ride. Up ,down, uncontrollible pain. but as I bio said, all this and I'm still alive.

Sandy DeWys Holland, Mi jsdewys@yahoo.com

I too read many of the Bio's with held breath, tears flowing, from the storys that now were bringing so much sense.

~~~~~~~~~~~

She also submitted this:

Hi, I'm Sandy DeWys from Holland,Mich 49424 My story begins when I had a car accident in 1994. I had back injuries,sent to a Lg pain Practice, doing epidurels into the spine .

In1996 I had a morphine pump im planted into the stomach with tubing going directly into the dura matter right next to the nerves. :fast forward.2 years..Had an MRI where they found granduloma's covering the Dura mater 18' up the spinal cord. Had more surgery ,to take the morepine pump out and try to get as many granduloma's out as they could. I had to walk with a cane because of nerve dammage. Had lots of Pain Meds, including Dura Morph injections and trigger point injections..fast forward to now:

Been diagnosed with cushings(steroid meds caused and extream pain depleated the adrenal glands. Started on hydrocortisone pills. The roller coaster begins.

The ups and downs I never expected this. I just can't believe the Dr.s didn't catch this before, with all the symptoms that I have.

My husband and my son are my rocks. I regreatfully say I lost my mother/daughter closeness, my daughter thinks I'm crazy, and is very imbarrised that I use a cane to walk.

She's 27 and has her own house now. I've been in a Pain support group for over 10 years. I can't tell you enough how important that was to keeping things in perspective.

Just being able to talk to someone like yourself. I learned a lot of tricks to the medical situations. What to do,what to take along. The BEST thing I learned was to make a notebook with all your records in one folder. To have atyped list of medications, so you can just hand it to someone when needed. I color coded mine to match up Dr.s with which medications. They tell me it's most helpful.

This site is just AWSOME so much information. You did a GREAT JOB when you set this up.
Thanks again;
Sandy DeWys
odd things, but the Drs. treated them one by one.

Ater going thru the cushings pages I find I have a host of symptom's, some are really strange that cortisol would cause. No special order;
Sleep problems
Darkening skin-looking tan
Uncontrolled pain-more than normal
Pain between eyes-forhead
Vaginal problems
Bruse easy
Osterporis
Anit-inflamatory meds-steriods
Facial hair
Bloated feeling
extream fatigue-muscle soreness
Urination problems
Stomach pain on and off
Shingles
Pubic and underarm hair disapear
Lymphedema
Foot Neuroma 18" of lg. bowel died
Spider veins
slow healing
Cateracts
feeling Ill/flu like
Skin tags Red moles
Bursitis
higher blood pressure than normal
falling for no reason
Back tissues swelling(buffulo hump)
weight gain unexplained
Mouth sores-lichen plantus
Mouth gum ression teeth spreading
Restless leg syndrom
Breast tenderness
purple stretch marks
sleep problems Lethargy-lack of sleep
Snoring
Exhaustion after ninimal effort
hard to urinate
Irritable bowel syndrom
Edema
Gum problems-bleading
fingernails peal
increased gray hair-all at once
sweaty skin slow pulse-shallow
dry vagina-painful intercourse Low sed drive
larger feet-larger shoe size
spacing between teeth
skin tags
red blood moles
swelling/hands-feet
blurred vision
Low blood pressure
Heart Palpitations
Anxiety
feeling of dread
puffy eyes eye
discomfort-itching

Email Sandy

Labels: bios, Sandy, steroids

My name is Lori. I was diagnosed wtih Cuhsing's Syndrom in Dec.

Despite all the testing, we have yet to locate the source. It's been very frustrating and my symtoms seem to be getting worse. My doctor is in contact with a Dr. Neiman out of Bethesda in the hopes of getting me into her clinical trial with the PET testing using some new drugs. In the meantime I wait.

My doctor thinks it may have started about 4 years ago. I had more acne around my jaw line than I ever did as a teenager. My weight started to creep up so I started WW. Even though I lost 22 lbs, my face was very much the "moon face" and I couldn't understand why. Bouts of depression had my weight going back up again despite WW and walking 3 miles 4-5x week. I had been in and out of the doctors office.

I had severe pain in my right hip, had an MRI and it showed lots of fractures in my sacram, pelvic bone and 4 fractured ribs. My doctor thought I was being beaten at home because I could not recall any "trauma" to have caused all of this. So the tesing began and I was deficent in calcium, Vit. D, potasium. My bone density tests came back way abnormal for a 42 yr. old, my muscles are extremely weak. So I was diagnosed with osteoperosis and put on supplelments and did lots more testing until my doctor suggested Cushings and sent me to an endocrinologist and more testing began.

Now I'm in a holding pattern to figure what to do next. Any one else been in this situation?

Most ectopic patients the tumors are found in the lungs but the CT scans didn't show anything, nor did the CT of my abdomen or pelvic areas. Nothing on the adrenals or pituitary. I've not been given any medications to help lower the cortiso levels in the meantime because I have high blood pressure as a complication as well.

Any information or contact with anyone in my same situation would be an enormous relief. Hopefully I'll be hearing something soon from my doctor to set up some kind of treatment plan.

Labels: bios, ectopic, Lori3, NIH

I am a 51 year old mother of 5, I have 6 grandchildren and have been married for 34 years.

I am a respiratory therapist, I have had fibromyalgia for 6 years.

i love to read and I am bleesed everyday with calls from my family to make sure I am ok.

Email Lori

Labels: bios, fibromyalgia, Lori2, not yet diagnosed

I am 31, mom of 3 in St Louis,Mo

What got me to this point was my missed menstural for 1yr. I finally broke down, stopped fighting husband that it was "because of my weight gain" (218 as of Nov.08)

So I go to the gyn she's freaked, "Why would you wait this long?" My answer periods have not ever been normal since birth of first daughter in 97, (son in 98 and daughter in 05) Just assumed cycle was changing at first or just because I couldn't loose the baby weight and then some.

She sends me for labs and tells me she thinks it could be early menopause or PCOS. Needless to say that labwork was abnormal and straight to the endo she sends me.

While being examined by the endo she is asking me about the pink stretch marks on belly(thought they were just from baby never really look at them)and the hump on the back the amount of weight gain in the past two years, depression (I did take med for before I got pregnant with #3- for a few months stopped when I found out) out of control mood swings, exxxtra facial hair, tired all the time, etc... anyway she just sort of mentions the cushings and sends me for more blood work...

Tests come back so many numbers and words that I really had no clue of blood sugar-high, testosterone-high, cholesterol-high, cortisol-high just getting #s thrown left and right.

She tells me she believes it is PCOS as well but we should check the thyroid(which is where my $ was on), so more tests and now ultrasounds of thyroid (1cm lump has to be checked again in 6mths) and ovaries (they are just fine I was told which really threw my question mark up).

In the meantime I started doing my homework and cannot believe that all signs have pointed to Cushings Syndrome WOW!!

Next thing I know I am checking my blood sugar everyday and put on metformin, changing the foods I eat- she put me on birth control, which I have never been on before and honestly still haven't taken them.. to much fam history of heart disease and stroke may sound crazy I am just not sure about that yet, which may be a good thing, I read that it may effect some test results with the cortisol..

Now I am into a week waiting on the 24hr urine and midnight saliva results. . the waiting is so frustrating especially when I absolutely w/out a doubt know that it is cushings!

I have read and read so many stories and cried and just in aww of how many of the symptoms I have and going back to 1998 after my son was born, the stress factors and the health problems and so on and to well, starting to put the pieces of the puzzle together. I still don't think my head has stopped spinning!

I think every story I read is almost like reading my own. I just need to get copies of all my labs and really learn the lingo and what levels are or should be what.

I am having a hard time with actually admitting to family members what the problems are with me because I sound like such a hypochondriac ,how do you get past that? I am such a mess emotionally and it's getting harder and harder to choke back the tears plus when test results do come back when and how do I tell my 10 and 12 yr old about this- not in any rush for that- but I feel like there is soo much that I nedd to prepare for I just don't know where to start.

Any responses are welcome please.

Email Lorrie

Labels: bios, Lorrie, PCOS

Hi, I am newly diagnosed Cushing's patient. I am still in the process of determining the origin of my cushings. I just had an MRI of the pituitary and am awaiting my resluts.

Ive had significant weight gain, high blood pressure, easy bruising, excessive sweating, anxiety, and purple striae on my stomach and legs.

Im a 24 year old very active female. I am a registered nurse and love to play soccer in my spare time.

Email Melody

Labels: bios, Melody, pituitary

Hi My name is Melesa and i am looking for some information or advice on cushing's.

I have a 23 year-old daughter who is being tested for this desease or sydrome and i am wondering what i am to expect while she is going thruogh her testing,also if she is diagnose with this what can i expect.

Thank- you to anybody who can help me out with this.

Email Melesa

Labels: bios, daughter, Melesa, not yet diagnosed

Greetings! This is Heather from KY. I finally am sitting down to type out my bio to try to help others should they recognize their own symptoms in my story.

I am 33 years old and I was never someone who was overly sick. I had my occasional bouts with the flu and at least one sinus infection a year, but overall was extremely healthy. I am a former semi-professional dancer and maintained a weight of around 120 lbs. I was blessed with super metabolism and never had to diet, but all that changed around 2002.

In 2002, I developed a case of Bell’s Palsy. It came on over the course of about 5 days affecting the right side of my face. My PCP placed me on a 70 mg daily dose of prednisone to be tapered after 1 week. I felt the effects of the steroid immediately, both good and bad. I was wired every night, up at 2 to 3 o’clock for hours. And the intense hunger about drove me over the edge. Additionally, I experienced a weakness in my jaws and neck that was quite disturbing. Eventually though, after tapering off the prednisone, those symptoms went away and I began to lose weight. I joined Weight Watchers and lost around 23 pounds, even becoming a lifetime member.

Life went along well for a while, I’d lost weight, had a good job and a great boyfriend. But then things started to change. I underwent a personality change that caused me to be moody and upset and pick fights with my boyfriend for no reason. My arms started going numb and I developed a fierce neck and shoulder pain. Even though I was still following my WW eating habits and going to the gym, the weight started to creep back on.

Along about this point in time the panic attacks began. I would go to bed, sleep for 2 or three hours and then suddenly wake up with a racing heart and feeling like I might die if I didn’t release some pent up energy. I literally would jump out of the bed with this horrific feeling that could best be described as “impending doom”. It was such a miserable feeling that I made an appointment with my PCP who thought it odd that I would have panic attacks in the middle of the night, so he began treating me for asthma.

I began to withdraw socially. I didn’t want to be around other people when I was feeling so poorly. My boyfriend decided to move on to a more sociable person, and I slipped into a deep depression. I felt like I was losing my mind and completely losing control. I finally began to consider that I was truly mentally ill. I researched mental illness and found that I had characteristics, but nothing truly fit the bill. I identified with some of the symptoms of bipolar disorder as I experienced wild swings in mood. But I also realized that my problems were not just psychological. I started to gain even more weight. Working out became extremely uncomfortable because of the crushing fatigue and feeling of not being able to breathe.

Trips to my primary care doc were not giving me the answers I needed. No one was looking at the aggregate of my symptoms, only the individual instances. I emerged from each visit a little more depressed than when I went in. I was given anti-depressants and a variety of herbs and natural combinations to try. Literally nothing helped. A small dose of thyroid alleviated a portion of the fatigue, but I still felt I was not getting to where I needed to be.

Oddly, the thought that kept popping into my head during this time was that I felt as if I was on steroids again. But that did not make sense as I had not taken a dose of steroid in several years.

Ultimately, my grandmother gave me an article about a woman whose story was eerily similar to mine. She was diagnosed with Cushing’s Disease. I’ve been involved with companion animals and animal rescues for a number of years and was familiar with Cushing’s in dogs…but had no earthly idea that a human could get it! I remember having such a strange mixture of emotions. On the one hand, I was scared for what may lie ahead, but at the same time I was excited and hopeful to be able to put a name to what had caused me to lose so much of the life I knew. An appointment with my primary care doc and superstar nurse practitioner brought excited concurrence from both.

I was referred to an endocrinologist who then literally laughed in my face when I mentioned Cushing’s. He then proceeded to tell me I was taking too much thyroid hormone and lowered my dosage. Yikes!! Never one to blindly accept the established order, I decided to do my very own research and seek a second opinion. And then a third opinion. All were in agreement on one point: I look “cushingoid”. But some of my tests came back with normal and even low(!) results. Hence I was sent on my way with the proverbial pat-on-the-head…and a recommendation for Weight Watchers.

Fast forward several frustrating months, and I entered into an intensive testing phase for a version of Cushing’s called “cyclical” or “episodic” Cushing’s after seeking the help of an expert in the disease. With cyclical Cushing’s, your cortisol levels fluctuate from high to low and then back to high, producing erratic results and further complicating an already complex disease.

My list of symptoms is fairly typical of Cushing’s:
• A 90 lb weight gain, concentrated around my stomach, that does not respond to diet and exercise
• A round, red face (moon face, facial plethora)
• Acne, much of it on not just my face, but also my neck, shoulders and chest
• Muscle weakness, making it difficult to squat or climb stairs
• Cuts and insect bites are slower to heal and my skin easily bruises
• Severe hair loss

In December 2008, after many years of feeling hopeless and alone, I was diagnosed with Cushing’s Disease caused by a pituitary tumor. Transphenoidal pituitary surgery has been scheduled for February 2009.

If you are just starting your journey, please listen to what your body is telling you. If you are unsatisfied with the answers you are receiving from your doctors, take matters into your own hands. Research and learn as much as possible and do not be afraid to fire a doctor that is not helping. And, most importantly, never give up hope. I’m so glad I didn’t.

Labels: bios, cyclical, Heather, pituitary, steroids

I am a 39 year old married mother of two children ages 5 and 6 and have had hormonal issues since childhood. I stumbled upon this site in search of information, support, and ideas on how I can improve my quality of life while I search for a good endo and get a proper diagnosis.

In elementary school, my poor parents didn't know what to do with me. I forgot everything and must've driven them crazy. I got lots of spankings for fogetting things. My hair grew slow, and I was short and tiny for my age. As I got older, I did not develop breasts or get my period until I was 17. The next one was 9 months later. Looking back, this was probably the first REAL clue that I was having hormonal issues. I've NEVER had regular cycles, even as an adult, unless I'm taking birth control meds. When I graduated high school, I weighed 103 lbs.

As a young adult, I did finally develop and my "pooch" ~ that little fat on the midsection ~ started growing. It was slow and gradual, nothing alarming, and I was still tiny. I took birth control pills throughout my 20's in order to have regular periods. During that time in my life, the hormonal imbalance was minimally disturbing, and an unofficial diagnosis of PCOS was all I needed to know. I did what the doc said, that is, I took my BC pills and everything else was pretty much normal.

Around 30 I married and wanted to have children so I went off the birth control meds and started seeing an Endo. I was officially diagnosed with PCOS after having an ultra sound that showed the tell-tale pearl-like string of cysts in both ovaries. He put me on glucophage, the newest, most exciting clinical treatment at the time. Glucophage made me nauseated and gave me diarrhea and did not help me with infertility. In fact, I think all it did was make me sick to my stomach and I gained weight while taking it. After a few months of this treatment, I got disgusted that the Endo was not helping me and that I was only one of his guinea pigs for his clinical study on the effects of glucophage, so I started looking for a new doc. His only requirement was that he agreed on the phone that he would prescribe clomid.

Clomid worked like a charm. By following a calendar, I planned the next months around my cycle and got pregnant the second month I was on clomid. We were thrilled! Of course, the pregnancy brought my hormonal imbalances to the surface and I developed insulin dependant gestational diabetes. I had two children and was insulin dependent with both.

After my second son was born, I began to have symptoms of depression and fatigue. I slept all the time and cried alot. The doctors put me on thyroid meds because it was low, and over time, welbutrin and provigil, which both helped, but were masking the real problems. When I moved, I had to see a new psychiatrist who decreased my provigil and tried to diagnose me with manic depression. He wanted to put me on yet another psychotrophic drug. That was the day I quit taking all my meds.

Over the next couple of months, my depression returned and I had absolutely no energy. I went to my GP and told him everything. I wrote it all down in bullet format and told him that I thought I had a hormonal imbalance since childhood. He's truly been great, but he's sooooo SLOOOOWWWW. He will only check my bloodwork every 6 weeks, and increases my thyroid by only 30 mg each time. The last time I had bloodwork done, my thyroid was low, but he had his nurse call me and tell me it was normal and would NOT increase my meds.

This made me extremely depressed! If my bloodwork was normal, then why the hell did I feel so rotten? And why was I getting more and more tired and dizzy every day? I made an acute care appointment with the next available doctor and she basically laughed me out of the office. I went home, cried alot, did some research and went out and bought: St. John's Wort, DHEA, a stress vitamin loaded with vitamin b's, iodine (kelp), and a multivitamin. I took all those along with my thyroid meds for two days, and got so sick and dizzy that I went in for another acute care appointment. This doc also basically laughed me out of her office (actually, she was clearly PISSED OFF that I came in again for the same thing) and told me to go to ER.

I did go to ER, that was two days ago, and they diagnosed me as having vertigo!

I will post updates as they are available, since I live only 2-3 hours from some of the doctors noted on this site, I will be going to see one of them soon. Honestly, at this point I don't even care if my insurance will pay or not. Somehow, I'm going to get help from someone who actually believes I have something wrong.

Email Tammie

Labels: bios, PCOS, Tammie

Hello. My name is Michelle. I am 26 years old and live in CT. I am divorced, but re-engaged to the love of my life, and I have a beautiful 3 year old daughter.

I am not diagnosed with cushings, but have the following symptoms:

fatigue
anxiety
abdominal weight gain
stretch marks
libido changes
hump on upper back
insomnia
tachycardia
blood pressure spikes
flushed cheeks
elevated androgens
high cortisol
dizziness
nausea

I have been sort of shrugged off so far by two endo's. MY GP is the one who thinks I have cushings, strange enough. The others think I have PCOS, but I do not have any cysts, I am not insulin resistant, I do not have elevated free testosterone, or any other blood tests results indicating PCOS. I do not have irregular periods either.

So, I am going to probably travel for help. I just want to feel better, and rule out anything that needs urgen attention. I am very happy to have found this site!

Good luck to all,
Michelle

Email Michelle

Labels: bios, Michelle3, not yet diagnosed

My 15 year old son has been struggling for almost a year with unexplained physical and psychological symptoms.

He suddenly developed anxiety about going to a school that he loves, and we consulted an endocrinologist because thyroid problems run in my family. Thyroid was ruled out early, but based on his symptoms, he was tested for Cushings and pheochromocytoma.

His symptoms over the past year have come and gone but they've included weight gain,excessive sweating, hot flashes, nausea, headaches, fatigue, joint pain, back pain, ptosis of his right eye, elevated blood pressure, tremors with exercise, constipation, diarrhea, irritablity, anxiety, and depression.

Early on, he had an elevated ACTH level, and the doctor assumed it might mean Cushings, so he did a dexamthasone suppression test that came back negative. A plasma metanephrine test came back elevated at 2 1/2 times upper limit normal so for 2 months they tested and scanned looking for a pheochromocytoma. None was found.

Over this time, we also got him psych treatment in case this wasn't a physical problem. He's been to therapists, spent a month and a half over the summer attending an adolescent day program for anxiety, taken 8 different drugs and nothing has helped.

Recently he had an 8 AM cortisol test to check for Cushings' and it came back exactly the opposite of what they expected-it was below the normal range. He's had testosterone levels come back below normal one time and above normal the next. Because he has an abnormal result followed by a normal, they just dismiss the abnormals. His body doesn't seem to be responding the same way twice.

I'm looking for ideas on what we might look at next. If any of the psych treatments had helped at all I wouldn't be wondering about a physical problem.

Labels: bios, Ellen, not yet diagnosed, pheochromocytoma, son

My name is Michele. I am going to be 42 years old.

I have suffered from a variety of mysterious symptoms since I can remember. I was diagnosed with hydrocephalis in 2002. I was vp shunted. Once shunted and several years had passed with symptoms continuing I had two MRI's arrive with a abnormal pituatary and this final MRI show a meningioma.

I am still jumping through hoops to get a diagosis. My first 24 hr urine came back with a cortisol level of 56. I have not had a menstrual cycle in 6 months and have a random weight gain of 15 lbs that made me seek again medical help. I am angry and from what I have read since I found this board I am not the only one.

I had an ACTH cortisol stimulation test done yesterday morning. I felt so bad when I woke up today that I honestly thought I was going to have to go to the emergency room. My head really and I mean really hurts and my eyes feel like they are going to explode. The headache has subsided some but my vision is not getting better and the swelling of my eyes is not getting better either.

I am scheduled to see a Neurosurgeon next week but I am feeling like it is going to be a waste of time since I haven't been through several different tests several times. I am hoping this is not going to be a long drawn out deal like it was when I was finally diagnosed with hydrocephalus.

Email Michele

Labels: bios, Michele, not yet diagnosed

Diagnosed with Cushings Disease when I was 21 (was in hospital having the tests on my first wedding anniversary!) - so 1999. Then got it again 3 years later in 2002.

Been clear for nearly 7 years but have just had word that my ACTH levels are high. Will be seeing specialist next week.

Labels: bios, Michelle2, pituitary

Hi. I am new to this.

Not sure yet if I have Cushing's but I've had most of the symptoms for a couple of years. The only thing keeping me from seeing an endocrinologist was a tumor which was finally found in my pituitary very recently.

I just had bloodwork and she is testing for like 9 diffferent things & I'm doing the 24 hour test today. I'm hoping to find out soon what is going on. I am on this site to see other people's stories to see if they mirror mine.

All I know is that I've been miserable for over 2 years now & now I'm starting to look like Santa! My face is always swollen & red, I'm gaining weight, losing hair where I shouldn't be & gaining it where I least want it! I'm also exhausted all the time & have a hard time climbing even a small set of stair.

Anyway, that is my story so far......

Email Gina

Labels: bios, Gina2, pituitary

my names sarah i am 26 i live in biggar saskatchewan in canada..2 years ago i was diagnosed with pcos, there were treating it and i was getting worse..

I started getting headaches and blurred vision almost everyday..So my gyno ordered a cat scan, when the results came in from that they said that they see a tumor but u need to get a mri done so they can have a better look, in the meantime i had blood test fro thyroid , prolactin ect..

Results from the mri showed i had a macroademia.. MY bllod test came back i had slightly high levels of prolactin, so they said u had a prolactinoma and put me on a surgery list to remove it, i got a phone call from my endo saying i didnt need surgery u just need to take dostinex and the tumor should shrink..

Well i was getting sicker i had to take sick leave because of work still no menstrul cycle headaches everyday, nausea, gaining weight like mad but hardly eating,seemed that the dostinex was making me feel worse i was getting upset because
the docs were looking at me like i was making things up, but really i wasent..

About three month later i was feeling terrible i ended up noticing a hump growing on my back and facial and back hair i never had today.. i also had tons of red strech marks on my stomach and my armpits and breasts,one day my mom calls me and says you need to go onto google type in cushing disease and read the syptoms, so i did, and i had every single symptom except for high blood pressure..

So i made a apt for my endo and asked her if it could be cushings , she said yes that sounds about right, i took a 24 hour urine and a dexomethane blood test and results came out that i had very high cortisol..Next i did the 3 day dex test, and yup sure enough it is cushings disease..

My endo booked me a apt with the nuero surg, who put me on a urgent list, twelve days later i had surgery..well my surgery was on nov 12th 2008..

I am still sick, still have bleeding in my nose and my nuero cant see me until feb 24th cause he is on vaca, i mean really tho i still havent even had a post op apt with him..

As for the cushings i am off of the steroids and feeling like crsap, some days i cant even get outta bed... I just had a triple bolus test done and i have high tsh and prolactin level, my apt is tues to discuss the prognosis yay what next, still have lost any weight well 5 pounds, still have a moon face, i will prob have the facial hair forever, but the sore muscles and headaches and nausea has got to go i am tired of being tired, but i am a insomniac so i cant even sleeo in the day..thanks for listening ..Sarah..


Email Sarah

Labels: bios, PCOS, pituitary, prolactinoma, Sarah2, surgery

I am 28 years old and have been suffering from cushing's symptoms for over 2 years now.

Several years ago I was diagnosed with depression. In the past 2 years it has gotten worse and my anxiety level and panic attacks have greatly increased. I have tried several different medications that have been no help, especially with the anxiety.

In the past year I have gained over 60 lbs and in the past 6 months I have gotten stretch marks all over my stomach and back. I looks like I am pregnant, but I am not. I am always tired and irriatable. I can never get enough sleep. I have started getting dark hair on the back of my arms and under my chin ( I have dirty blonde hair naturally). In the past couple of months I started doing the Atkins diet and have not lost weight...I have started walking/running again and nothing has worked. I have had severe back pain and the Chiropractor can't seem to fix the problem. It is hard for me to bend over sometimes and it makes me made because I am still fairly young. I recently went to a new Internist and I just completed my blood work and 24 urine test. I am waiting on the results....any day now. I know that I am not a Doctor, but I feel like I have the symptoms.

Is there anybody out there that can give me some advice? What is the next step...does it even sound like Cushings??

Thanks for ANY advice...Sara

Email Sara

Labels: bios, not yet diagnosed, Sarah

My bio for the Cushings and Addisons web site.

Hi my name is Harley I'm a 56 year old male. In 1985 I broke my back which reqiured several surgeries over a period of 10 years, which caused a severe amount of pain. Then about 10 years ago I was diagnosed with addisons disease. I did'nt have all the symptoms of the disease but I've been diagnosed by my family physician plus other physians have confirmed the diagnosis also. As we all know this disease is very hard to detect. I've been on prednison and high doses of hydrocordison over the past 5 years. I've been hospitalised numerous times with adrenal crisis.

I was also diagnosed with a pituitary malinoma and have been treated that over the past 10 years. I have MRI's every so often to see if it has enlarged.

I started seeing a massage therapist for the past 4 years.Starting with my back which has really been helping. She also treats me with oils which I was very hesitant at first but have grown to believe in them in many ways. My doctor has also discovered that my testoterone levels were extremely low so he has been giving me shots for that every 2 weeks I have recently been diagnosed with Cushings do to the high doses of steroids I've had during this time. In the past I've seen three endroconligists to avail.

Needless to say my wife and I have been very discouraged after all they are supposed to specialists. My last hospitalition my family doctor talked us into seeing another endo as my doctor said he was afraid of the shape I was in he was afraid of me not making it. I thank God for the faith that my wife and I have or I'm afraid this would have been more than we could handle but He has given us the strength to keep moving on.

God directed my wife to a gal that is a Certified Holistic Practioner that also has Cushings and Addisons herself. She has been living with this for the past 7 year. This is what prompted her to start her practice of healing. She started treatin herself first using oils and changing her diet and it worked for her she is stable now and doing much better. This is a real blessing because she has studied this disease indepth plus can relate to what I'm going through. It's been great because before this I had know other contacts as we all know these are very hard diseases to detect. The new endo has set up a series of tests for me which I started a week ago and have another series this next Monday, after he gets the results of these he will decide where to go from there.

I'm so glad that God has finally set up a support group for me but they are also very strong in faith which continues to feed my wife and I.

Labels: adrenal, bios, Harley, pituitary, steroids

Naturalpath believes I have severe adrenal fatigue, and thyroid problems. I have an cyst 1.38 cm on my adrenal gland, non cancerous.

I have all symtoms of Cushing. My blood pressure only low in morning. I take blood pressure medication. I have been diagnosed with 44 illness and list keeps growing. I am extremely tired all the time, even when I get out of bed. Diabetic, and have a number of autoimmune diseases, and severe allergies. I am 55 this year, and I have been going down hill for many years. Had to go to naturalpath for help.

Email Gerri

Labels: adrenal, bios, Gerri

Hear my Cry for Help!

I was a happily married, 37 year old mother of 5, successful music teacher until this "thing" overtook my body. I went from being an active, healthy, popular child, teenager, and young adult who had easy pregnancies/deliveries/recoveries to what I am now: a FREAK of nature.

Symptoms I've noticed since the birth of my 5th son, a year ago: huge hump on my upper back that appeared out of nowhere and only gets bigger; rounded face, fat, red cheeks, and double/triple chin; stretch marks that are wider than 2 inches and longer than 6; abdominal boils and other skin infections that have to be lanced and won't heal; vision problems; SEVERE fatigue and weakness (yesterday I couldn't get the toothpaste out of the tube); sudden and intense headaches that come out of nowhere; skin that bruises so easily that I can no longer wear a bra, carry a diaper bag, or get my blood pressure checked without scrapes and bruising; thick and coarse hair sprouting of my cheeks, chin, breast, and toes; hair disappearing on my pubic area and head; dizziness; vertigo; EXTREME weight gain (I am 5'4" and now weigh 264.5--more than I've ever weighed); cracked lips and mouth ulcers and cracks on the sides of lips that won't heal; constant yeast and bacterial infections; heightened sensitivity to light, smells, and sounds; cloudy urine; varicose veins that are widening and throbbing; loss of memory and ability (I have double master's degrees in English and Music but had to ask my husband if America was a country the other day, and couldn't remember that my Mother took me shopping for black jeans a week ago); diarrhea; anxiety; depression; back ache; water retention so bad that jeans will fit one day and not the very next; arrhythmia and tachycardia; craving salty; bones popping and grinding; 4 root canals in past year; backache; neckache; numbness and tingling in extremities from time to time (or always being cold there); irregular and shortened periods; blemishes and sores inside my nose; insomnia; decreased libido and inability to orgasm; skin tags (near 50 the past year); and weird hyper-pigmentations on my face, under my eyes, and on my belly and elbows.

I was treated by my PCP who asked me to go to Vanderbilt and "be checked for Cushings". I went to Vanderbilt and was welcomed by a wonderful endocrinologist who instantly believed that I had Cushings and even commented that I "was like a walking textbook description of Cushings". My bp was 166/100 that day, and because my headaches and vision issues were so bad, she ordered an MRI thinking it was pituitary. MRI results didn't prove anything abnormal. She ordered 2 48-hour cortisol tests which also came back with "very normal levels" which means that she no longer wants to run the catscan on my abdomen to find the presence of adrenal tumors. My bloodtests came back with high chloride blood and love creatinine blood. Basically proves my muscles are wasting. No further comment.

This morning I spoke with her on the phone and it sounded as though she were finished treating me--she would "pass it by some colleagues...but with the cortisol levels being normal, there's really not Cushings afterall...". She asked me to "follow-up" with my PCP and "get a CBC to rule out the big things" such as AIDS and cancer. Geez. She also said I may be anemic. Um, ya. I've been anemic--even severely--for 3-5 years now.

I am frustrated, deeply depressed, in tears, very weak, tired, and not wanting to be another statistic that seems so common on this site--going through 18-30 physicians before someone finally notices that something is wrong with me. I know in my heart I have Cushings--what else could it be. But attempts to prove it seem futile, and I'm only getting worse. It seems easier to give up than to spend hundreds of thousands of dollars and turn into a guinea pig and pin cushion for someone to finally say, "oh ya--just because your urines were off doesn't matter--there's still clearly something wrong". I feel like I'm a candidate for "Mystery Diagnosis". Unfortunately, I don't have the patience or perseverence to sit around (or lie in bed all day, rather) and wait.

Any thoughts? Prayers don't seem to be working, even though I'm married to a preacher.

Rebecca

Email Rebecca

Labels: adrenal, bios, not yet diagnosed, Rebecca3

I am 57 years old, and have had a hump on my back since childhood. Even my surgeon doesn't know what it is. I had gastric bypass surgery in May 2007 and have lots 55 pounds. Unfortunately, I have only gone down two sizes in pants because of my large abdomen. I have hirsutism on my face, neck, tummy, upper thighs, and even on the edges of my ears. My doctor just laughs when I say that. I have had depression for many, many years, and my concentration is sorely lacking. I sleep very poorly due to restless legs and inability to relax.

My lab tests in 2005 showed an elevated cortisol, but a negative dexamethasone test. I have a 1.1 cm adrenal adenoma. My latest 24-hour cortisol test last week was 53.7, highest in that lab being 50. At my doctor's suggestion, I emailed an endocrinologist for whom I do transcription, and he commented that it is possible, although not definitive that I have Cushing syndrome. My regular doctor seems reluctant to order the tests advised, probably because he thinks I'm grasping at straws to find out why my weight loss has stopped and my abdomen remains large. He is reluctant, although willing, to order the tests, I think, but time will tell.

I am very frustrated by this issue. I have questioned it for YEARS, but no one has paid attention. I am tired and fed up with the lack of answers. I hope this new testing will shed some light on the issue and either prove or disprove Cushing syndrome.

Email Susan

Labels: adrenal, bios, SusanW