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