Monday, July 13, 2009

Erica (Ericaop), undiagnosed bio

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

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Beverly (bookyeti), undiagnosed bio

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

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Friday, July 10, 2009

Christine (Christine), undiagnosed bio

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 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

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Monday, July 6, 2009

Shon (Shon), undiagnosed bio

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

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Wednesday, July 1, 2009

Amber (AmberP), undiagnosed bio

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)

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Monday, June 29, 2009

Melissa (Melissa G), undiagnosed bio

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

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Saturday, June 27, 2009

Katie, undiagnosed bio

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)

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Friday, June 26, 2009

Beth (bounceback01), undiagnosed bio

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.

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Tuesday, June 16, 2009

Elaine, undiagnosed bio

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

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Saturday, June 13, 2009

Tanya W, undiagnosed bio

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

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Friday, June 12, 2009

Lianne (Kiwilady), undiagnosed bio

Not yet diagnosed but have high blood pressure, am pre-diabetic, and have (under or over - cannot quite remember which) active thyroid. These all diagnosed late last year.

Have been putting on weight for past 18 months or so, increasingly over past 6 months. (Went from 126kg. three days ago to over 130kg.'s today --- impossible to say what it is exactly today (13 June 2009) as my scale only goes up to 130kg.'s).

I have been seeing a Gastroenterologist due to 'tummy problems' for some months. He rescribed Creon which I take with every meal. This is because he believes I have malabsorbtion. An MRI MRCP (Pancreas + ducts) done recently was negative and am due to have a Hepotobiliary Scan (IDA) in a few weeks time. He also referred me to an Endocronologist who has found the following:

"Moon face"
"Buffalo hump"
Inexplicable weight gain with supraclavicular fat
Reddish stiae in lower abdomen
Bruise easily
Significant proximal weakness
Increased pigment on left side of neck and upper back (the latter has mysteriously disappeared but I have photographs to prove it was there)
Low energy levels (this is actually extreme fatigue)
Increased frequency of urination.

The first 24 hour cortisol test was slightly elevated at 304 nmol/24 hours. My second test - read about 2 weeks ago - was "within normal range" according to my GP (exact figure not yet known).

I am not using any blood pressure lowering medication as yet and am due to consult my GP again about this issue next week sometime (appointment not yet made).

I use Gabapentin (3 x 300 mg's x 3 daily) and Tramadol (150 mg's x 2 daily + 50mg's x 1 daily) for residual low back pain (post 2 x discectomy surgeries at L5/S1 level). I also take Prozac (2 x daily) for PTSD.

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Saturday, June 6, 2009

Verla (verlamom), Undiagnosed bio

My oldest daughter, Denise, has symptoms which I think are cushing's syndrome.

She has had asthma since an 8 yr. old child (now 45) with various inhalers, nebulizers, & bronchodilators & intermittent cortisone bursts of treatment--usually 4-6 months apart; at times a year between. For the past 4-5 yrs. has used Advair inhaler which was started at low dose & dose increased to currently 500/50 (high dose) twice a day for control.

Adrenalin for emergency use has not worked for her since she was 9 or 10. It seems her doseage need for solu-medrol & prednisone has increased when acute episodes occur--the last asthmatic episode occurred in Feb. 2009 when she needed a solu-medrol 100mg injection & prednisone 80mg in slowly tapering off doses. She does not regularly take any oral or injectable cortisone--just the inhaler of Advair.

She has slowly been gaining weight during the past year, but in the past 2-3 months has gained 40#, particularly in the upper torso area. Her breasts are huge, she has a fatty area at the back & neck, her face is rounded with swelling at temple areas because she has trouble with her glasses getting over that area (usually wears contacts as her eyesight is extremely near-sighted--had bi-focals when 8 yrs. old). Her eyesight has been getting progressively worse in the past month & in the last week has gotten extremely light sensitive, eyes swollen nearly half-shut, blurring, & peripheral vision not good. Saw an optomotrist Fri. June 5, 2009 & will be getting new contacts Mon. & using eye drops for irritation of one eye. Wearing dark glasses all the time in addition to contacts. Has headaches constantly, over the past 3-4 weeks have been getting worse--not migraine she says, but much like increased intracranial pressure like she had following a myelogram 8-10 yrs. ago (developed a spinal fluid leak & lost so much fluid that her brain stem was pulling down into the foramen--received a blood patch & it then sealed & things became normal).

She's had 4 back surgeries with 2 of them being fusions, diagnosed with PCOS with emergency surgery for a huge cyst which ruptured as they opened her abdomen; hysterectomy for endometriosis, etc. about 4 yrs. ago.

She has extreme fatigue--is an RN who generally loves her work but is having a very hard time getting up in the morning & can sleep at any time. Does sleep at night. She says that her thought processes are not as quick & feels "mentally slow." Has bruising & bleeds easily, occ. flushed face, stretch marks but not colored.

She had seen 3 different GP's--got in to see her PCP finally who at least listened to her. He ordered an MRI of pituitary on May 30, 2009 which was read as normal as well as a lot of blood tests. She also has an ovarian ultrasound & a low dose dexamethasone suppression test--so far all the tests have been in the "normal" range. At present no salivary cortisol or 24-hr. urine test done & no adrenal scan done. Thyroid testing has shown considerable change (TSH from 4.5 about 8 months ago to 1.8 about 2 wks. ago).

Was referred to endocrinologist who she saw on June 3, 2009 who did little to nothing from my perspective--drew more blood (if this was the 1700's she should be well with the "blood letting"). He told her the lab wouldn't come back for a week--He was in Lincoln, NE & so is the lab--don't know why it takes so long. He prescribed premarin without telling her & it was simple at the pharmacy when she got her eye drops yesterday. Apparently, in answer to a question, she told him she sweat a lot. He's not on my list of preferred doctors. One of the early doctors, not her PCP, told her to go home & lose weight & have a sleep study; another has referred her to a rheumatologist.

We are very worried about the escalation of the symptoms & the severity of her headaches & vision. We are thinking of asking for a referral to the Mayo Clinic--we hope there are good endocrinologists/Cushings/whatever doctors there. I have found that a Dr. Young is a specialist in Cushings. Denise's mood varied from thinking she's a hypochondriac when the tests come back negative & knowing that something is dreadfully wrong. She also has felt that she might faint at times with a kind of dizziness.

Any advice would be appreciated. Thanks.

Email Verla

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Monday, June 1, 2009

Jessa (Jessa), undiagnosed bio

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

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Wednesday, May 27, 2009

Naira (nairav323), undiagnosed bio

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.

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Evin (Evin), undiagnosed (possible adrenal) bio

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

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Saturday, May 16, 2009

Melanie (Melanie W), undiagnosed bio

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.

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Monday, May 11, 2009

Sue (Sue), undiagnosed bio

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?

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Sunday, May 10, 2009

Kate (kate22), undiagnosed bio

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

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Angie (dermpat), undiagnosed bio

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

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Monday, May 4, 2009

Shiloh (Shiloh), undiagnosed bio

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

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Sunday, May 3, 2009

Luisa, undiagnosed bio

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

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Friday, May 1, 2009

Song, undiagnosed bio

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.

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Alisha (gbsawyer), undiagnosed bio

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

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Saturday, April 18, 2009

Anne (kittiefoster), undiagnosed bio

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

Email Anne

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Friday, April 10, 2009

Debi (debkelly), undiagnosed bio





Email Debi

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Thursday, March 12, 2009

Xchicagoan (xchicagoan), undiagnosed bio

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,

Email Xchicagoan

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Thursday, March 5, 2009

Jenny, undiagnosed bio

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

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Tuesday, February 24, 2009

Christina (chris1228), undiagnosed bio

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

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Thursday, February 19, 2009

Frank (franbony), undiagnosed bio

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 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

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Wednesday, February 11, 2009

Lori (lori1014), undiagnosed bio

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

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Tuesday, February 3, 2009

Melesa, undiagnosed bio

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

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Friday, January 30, 2009

Michelle (Map820), undiagnosed bio

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:

abdominal weight gain
stretch marks
libido changes
hump on upper back
blood pressure spikes
flushed cheeks
elevated androgens
high cortisol

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,

Email Michelle

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Ellen's son, undiagnosed bio

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.

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Wednesday, January 28, 2009

Michele (blakeanddbrycemom), undiagnosed bio

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

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Thursday, January 22, 2009

Sara (SaraR), undiagnosed bio

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

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Friday, January 16, 2009

Rebecca (preacherteacher), undiagnosed bio

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.


Email Rebecca

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Monday, January 12, 2009

Tina (tinadianne), undiagnosed bio

My name is Tina. I'm 35, happily married, and mother to three teenagers.

I have not YET been diagnosed but am currently undergoing testing. My journey started back in 2001. It has been very difficult but also quite humorus at times. Like many others, up until now, i have been treated with anti-depressants, heart medicine, and pain pills, xanax for the anxiety, and ambien for the sleeplessness. The forgetfullness as a symptom is bad enough. Add a couple of meds to the mix and you might as well be an alzheimers patient.

My constant symptoms consist of the "fat pads" on my shoulders- which basically look like misplaced breast implants, moon face, and the fat mid section. I basically look like a baking potatoe over the much preferred hour glass. The anxiety is a constant as well. The best way to describe it is someone sneaking up behind you and scarring the crap out of you, and it's that immediate response that you have and it never seems to go away. I respond to small things like you would expect a wild barn cat to react. That, and the forgetfullness are the things my family have fun with. The mood swings come and go, along with the blood pressure and heart rate that are up one minute, and normal the next.

I have red hair and a typically light complexion. Since 2001 i've looked like a boiled lobster. I have constant shoulder and hip pain for whatever reason is only right sided. I've started developing skin tags (gross) around my armpits, the tops of my feet, and under my breasts. That's a symptom i could really do without. I can't sleep without medications. I'm easily bored. Most of my thoughts become fleeting or forgotten memories within seconds. The hot water tank is never full and the laundry seldom makes it in the washer. My washer however is spottless from all the "dry" runs.

My only about all this is- Does anyone else seem to become "refractory" to medications after only a short time and doses continually increased?

My next appointment is tomorrow. Will keep you updated. Until then- God Bless You All.

Email Tina

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Saturday, January 10, 2009

Kim S (lil dickens) undiagnosed bio

I was diagnosed in 1995 with hypotyroidism,...after the birth of my third son vie C section. I knew I was gaining too much weight during pregnancy but no one would listen to me. I've had hypo for fourteen years now, with ongoing difficuties and no wieght loss. Just gained 5 more lbs this month!

I became suspicious when I could not get my thyroid disease under control and started moon facing. In 2005 my daughter noticed my buffalo hump. I tried to point it out to the doctor but to no avail. Said it was fat.

I have to note that when I was a child I cracked my skull open. My sister said I had clamps on /in my head. I cannot find anything else about it. I had severe headaches, poor appetite, skinny and fearful. Many emotional problems. I came home from school alot to have ice paks on my head for the headaches. I started to drink alcohol at about 13 yrs old, becoming an alcoholic tilll age 33. 20 years of drinking!

I am persuing a diagnose for cushings based on my symptoms and the huge hump on my neck. I've been really complaining for the last two years.

Newest doc was the one who gave me a copy of a printout on Cushings. She is sending me to a endo but who knows. 3 1/2 month wait to see Endo.. Now, wouldn't you know it, my hubbys job looks like its going to be terminated in March, so my insurance will only be in for two months after that! I'll be without insurance! augh!

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Monday, January 5, 2009

Randy (burrman), undiagnosed bio

I have been complaining to my PCP for years about my increasing issues. He always says he'll look into it but by the time I see him again, he has no idea what we discussed previously and continues to write me scripts for the obvious.

I suffer classic symptoms of Cushings but have scripts for Lisinopril, Simvastatin, Zoloft, Protonix and Metformin.

I'm a 49 yo male, take more meds than my Grandmother and still feel like crap! I came upon this website this weekend after I saw a blurb on FoxNews about Cushings.

I contacted my PCP (with checklist in hand) today and demanded a referral to an 'Endo'. I haven't heard back but if I don't get it soon, I will pay for the initial consult and seek a new PCP after the diagnosis (positive or negative).

I'm going to get an answer or I'm going to transform into the PATIENT FROM HELL!

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Monday, December 29, 2008

turtledove (turtledove), undiagnosed bio

just found this sight looking for answers to a long list of problems and diagnosis.

I have battled years long of severe stress and well am trying to find out what happenned and how to get well again. I have menapausal estrogen issues not answered shoulder impingement problems and one dr suggested I had phase 3 exhaustion which led me to study on adrenials.

blood work has been done whichis showing elivated red blood cell counts my thyroid levels appear within the normal range but 30 yearrs ago i was treated for hyperthyroidism which even then i suspected was not the right gland. Im wondering if this elivated red blood count is yet another indicaation of this adrenial issue as dr after dr finds this that and the other and treats each as such.

im just learning about this condition an dwhere it appears i am fitting into it but what test will show if it is or isnt? its all very confusing.

i am 51 now and as i have said the last 5 years of my life have had supreme stress and conditions that have just led to exhaustion mental and memory failures pysical problems that obviously didnt happen overnight and now the red blood count in the picture......does that fit in here somewhere?

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Sunday, December 28, 2008

April (April), undiagnosed bio (PCOS)

My name is April...I am 34 years old and recently started having some issues that led my family Dr. to do some bloodwork. My cortisol levels came back very "very high" according to him, with regular female hormones "slightly out of whack."

I am so condufused at have no idea where to turn. I found this board and in reading the bio's it was like reading "my story". I have felt like I am going crazy and no one understands...including my unsupportive husband.

My history...
2 children...premature (they re 15 & 16 now)
2 miscarriages in past 5 years
hemmoraghed 3 times, hospitalized -D&C
Heavy abnormal periods w/severe back pain
Diagnosed with PCOS 2 years ago after trip to emergency room with what i thought was appendicitis
Underwieght (5'2...100 lbs) but have "spare tire" around mid section
Have very large Lipoma on shoulder blade near neck
Adult onset acne and boils
Severe shoulder neck pain
Went to family Dr. recently because I had a 9 day crying jag over something trivial, to the point i couldn't work!
Dr. prescribed Zoloft and Xanax,for depression,which stopped the crying, but i feel like i may be abusing the xanax.
I feel sad and alone. I just want to stay in my house and hide!
I also have always had anxiety.
My blood pressure has always been low, but Doc has always said that's normal for person my size.
No sex drive.
Don't like people touching me.
I smoke, like a frieght train.
I CANNOT SLEEP more than three hours! I can take 15 mg of melatonin and 2 mg xanax and still be up after 3 hours sleep.
I only urinate about 3 times a day which is dark and cloudy and funny smelling. (sorry if TMI)
I am always thirsty!
i could go on and on...

I just want to know if I am crazy or if something is really wrong with me. this is affecting my realtinship with my husband and friends.

my insurance company shanges after January 1st , so i will be making an appt with the surgeon to have the lipoma removed.

Should I see an endocronolgist?
when i talked to my Dr. about my bloodwork, I was so overwhelmed, i didn't ask any of the right questions.
all I remember him saying is that a norml cortisol range would be 200-300, high 500-600, mine 823.

Does this make sense to anyone?
Thanks for listening!

Any advice would be a god send...

Email April

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Tuesday, December 23, 2008

imbolcgirl (imbolcgirl), undiagnosed bio

I'm a 28 yo woman, and had been overweight growing up (Slavic diet!), but was able to take and keep the weight off with a sensible diet and excerise. I had viral meningitis in 2004 and ever since then, everything has gone south. I gained 80-odd pounds in 14 months with no change in diet, and now several years later can't stop gaining weight even on very restrictive diet/exercise regimens. I was tested for PCOS but came up with no cysts, am not currently diabetic but hoping to not become one, and tired, punky, and getting really really desperate. I do hit for most symptoms, excepting a prominent buffalo hump. I have worked in medicine (allied, not a dr or nurse) and am almost afriad to present my question of cushing's to my dr, but I don't know what else to do! I gain weight on 1400 calories a day, and exercised myself right into a torn-up A/C joint! I'm just so afraid to even ask for the tests because of "med-student's disease" or being called a hypochondriac. . . and I do NOT want to have bariatric surgery unless I really really need it!

Currently, I am 130 pounds over my pre-meningitis weight, up all night drinking and running to the bathroom, have a seriously huge belly with lovely skinny ankles and wrists, stretch marks on breasts, belly, and underarms, look at me twice and I bruise, have weird temperature issues - my feet are numb, my hands turn blue, but if I go to bed under even one blanket I wake up soaked in sweat. I have a bit of the lovely "extra" hair, and haven't been interested in the sensual side of life in months.

Things I do NOT hit for: I'm not quite a diabetic using home testing, close but no cigar, and I consistently have LOW blood pressure, usually. I'm on hormones, otherwise I have very long and heavy girly times, rather then short/light/nonexistent.

I see my doc somewhat suddenly tomorrow (I finally got completely frustrated being told to "just eat less" and decided to just ask for the testing.) This is the middle of nowhere, but my doc is not a bad guy by any stretch - but how do I ask without looking crazy? Can meningitis squoosh your pit enough to cause Cushing's even? AM I just nuts?

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Saturday, December 20, 2008

Lisann, undiagnosed bio

Being checked for Cushing's. Have adenoma, long term hydrocortisone user, Graves Disease, a lot of the symptoms.

Don't know much about Cushing's.

Having cortisol,diabetes,lipid,blood test all next week.

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Sunday, December 14, 2008

Leann, undiagnosed bio

I'm Leann, a 40-year-old single mom of three from Pittsburgh. My son was recently diagnosed with Congenital Adrenal Hyperplasia. Because of this, it caused me to suspect possible adrenal problems with my oldest daughter (age 19) and myself. I am unsure of my daughters exact lab results (she sees an endo on 12/22), but mine seem to be indicitive that further testing is needed to rule out Cushing's Syndrome. That's why I am here (well, that - plus my friend told me to join).

My initial bloodwork shows high blood pressure, high BAD cholesterol, low GOOD cholesterol, and high cortisol levels. I initially went to my PCP due to extreme fatigue! I am soooooooo tired ALL THE TIME! My muscles are always sore and my bones hurt. I am prone to miagraines. I have been clinically depressed, I believe my entire life, but was diagnosed about 20 years ago. The weirdest thing (possibly unrelated) is my diagnosis of Retinitis Pigmentosa, a degenerative retinal disease characterized by loss of peripheral vision and night blindness. My mom read somewhere that loss of peripheral vision is a symptom of Cushing's, but she can't find the website.

I also have gained a significant amount of weight in the last few years, all in my mid-section. I look like I am either 7 months pregnant or that I drink a case a beer a day.

My PCP seems to think that I do NOT have Cushing's because my ACTH levels are fine, but he didn't do any special ACTH testing, only the basic bloodwork, all drawn at the same time. I argued with the nurse about it and asked that my PCP call me back (on Thursday) but he hasn't yet.

I am just so tired of feeling like crap all the time. I am hoping to find some answers here. Thanks for reading.

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Friday, December 12, 2008

Natalie, undiagnosed bio

I have not been diagnosed with Cushing's, but I have been diagnosed with PCOS. I do not think this diagnosis is correct however. I have only ever had one cyst on my ovary.

After searching on the internet for another diagnosis, I came across cushings. I believe that I have this because I have alot of the symptoms. I am very overweight, even when I used to be very active and healthy. I never lose weight. I have stretch marks all over my body. I have spasms, and heart palpatations which I read can be a sign of adrenal gland problems. I have irregular periods. My periods tend to be very long when I have them, (This one has lasted for nearly since the end of august and it is now the middle of december.) then they go away for a few months. I have thinner arms and legs, while my middle is large. I have what is often refered to as a buffalo hump, and fat above my clavical. My face is round, and I have a double chin. I have alot of the other symptoms to.

When I was younger my doctors were concerned that I had a tumor on my pituitary gland, but I was never able to get an MRI. I don't know if this has anything to do with it, but I had to have surgery on both of my eyes due to strabismus. I heard that cushings can cause vision problems, but I don't know if strabismus is one of them.

If you know anything that you think will help me, please e-mail me.

Email Natalie

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Friday, December 5, 2008

Renee, undiagnosed bio

My symptoms began when I was about 21 years old. At the time I worked as a Martial Art instructor so I was very physical and in good shape, weighing about 120lbs. Suddenly, and I do mean SUDDENLY, I gained about 60lbs or so. It was as if my clothes fit one night and then didn't fit in the morning. The weight is mostly in the middle area. My face shape changed and I developed a second chin almost.
I also started getting some whiskers on my chin and neck. Not a lot, just a few, but it was strange.

I was under great stress at the time because I had lost both of my parents in the same year, to two different medical things. So as you can imagine, it was very difficult for me. I developed extreme fatigue, and anxiety attacks. Friends were sure all my physical and mental symptoms must be from depression over losing my folks. One friend advised I see a psychiatrist, so considering everything it sounded reasonable, and I did.

I was placed on Paxil, which caused me to gain even more weight. Since then I've tried so many antidepressants I can't even begin to name them. I went through many SSRI's, then SNRI's, then tricyclic, and most recently as a last resort an MAOI.
But in spite of this, over the years my depression has only gotten worse. I've had two suicide attempts and been hospitialized a few times. My depression seems to follow a pattern or cycle, two weeks of barely being able to function, followed by a week of doing a little better, then a day or two of feeling good, then back to two weeks of misery, etc. I am not bipolar or anything like that.

I continued to gain weight, developed stretch marks on my belly and arms, got a lot of dark hair all over my belly, and the few whiskers that appeared on my chin and neck have become like a beard. I developed insulin-resistance, high cholesterol, and high blood pressure. I can seldom sleep at night. I experience such deep depression and fatigue that I haven't been able to keep a job or finish collage,
I barely function.

For many years I just thought I had really bad depression and continued trying whatever psych meds I was prescribed. I thought all my physical symptoms were my fault for being so depressed and not getting enough excercise, etc. And most of the time, I was on so much medication I didn't really care, I was so out of it.

Finally I found a great psychiatrist who truly cares about me and wants to see me happy. After having little or no success treating my depression, fatigue, and panic attacks, she did some research and told me not long ago that she felt I must have something biological going on with me that wasn't any type of clinical depression. She said she had tried hitting all the different receptors in my brain (seretonin, norephinepherine, dopamine, etc..) and I should have responded to something. She suggested I might have Cushing's Syndrome. I went online to find out about Cushing's and I was like "Wow I really match a LOT of these things!"

Now I am on quest for getting tested. It's difficult as I do not have any health insurance. But I am making a little progress and hope I start to get some answers soon.

I either have Cushing's syndrome, some other endocrine problem, or the most treatment-resistant depression ever.

That's my story, thanks for reading. I'm open to any comments or advice.


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Tuesday, December 2, 2008

Karissa (K), undiagnosed bio

Today (12/2/08) I had to go get my yearly gynocological exam. Its usualy an in an out thing, step on the scale, go into the room, get examinied and then you are done.

Well this time was a little different. The MA took my blood pressure, it was 130/100, she told me that was way to high for someone my age. They continued with the exam and before I went to leave the dr said she wanted me to go have some blood test done to check my thyroid, which she said would explain my weight gain and fatigue. She also wanted to recheck my blood pressure one more time before I left, that time it was 150/92.

I went to leave and as I was standing at the desk to check out, the dr came back out and asked if she could speak to me one more time. After I paid my bill I went back with her and she told me that after I had my blood test done that she would want me to goto my primary care dr and have them do some test for Cushing's. I was shocked, where had all this come from, she said that I had some symptoms of Cushing's and she would like to rule it out. She said that could be the reason for my "moon face" and why I have very lean arms an legs but a fat upper body mostly in the shoulders and back area and around the neck.

Well of course I got concerned and as soon as I got back to work I began to do some research on ths subject. I read a lot of the symptoms some fit some didnt, the excess body and face hair fit, the moon face fit, the acne fit, the redness in the face fit, the buffalo hump fit, the fatigue fit. But the thin skin, muscle weakness, and bone weakness didnt fit. So im really unsure at this point, I dont know if you have to have all the symptoms to be diagnosid or not.

I am a little nervous after reading some of the stories on here, but then again it does explain alot. I scheduled my blood test for the thyroid for next tuesday and the dr wants me to do the other test if the thyroid test comes back negative. So we will see.

Email Karissa

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Monday, December 1, 2008

Che, pituitary bio

My bio- I dont know what a bio actually means. I havnt been diagnosed with Cushings, but I have so many of the symptoms. I asked a docto 8 years ago to test for it but he said I wshouldnt worry about it.

I discovered an article in my A & P text and started searching.

Now I'm really detirmined to push for testing. I know I had a Ct 10 years ago that showed a slight irregulairty of the pituatory gland. The doctor said is was insignificant.

Any way I think this forum is great and I'm sure I will learn a lot.

Email Che

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Wednesday, November 26, 2008

Tori, undiagnosed bio

Hello my name is Tori. I am a mother of three children.

My oldest daughter who is 6 years old has symptoms of cushings syndrome. I would say it all started when she was 4 years old. One day she just started gaining weight. When she was 5 and started kindergarten she weighed 57 lbs.I went to the doc and the referred me to the Endo docs. They tested for everything but did not test her cortisol levels. It is very hard because I know she doesnt eat.

Currently she is in first grade and i went back to the doc again she nows weighs 91 lbs and has gained 35 lbs in 1 year!!! Another thing i noticed is that she is starting to get pubic hair and she is 6!!!

The doc just checked her cortisol levels through a 24 hour urine screen and they said that her levels came back normal!! So aggraviating not knowing what is going on!!! ??????????????? She has a moon face, big stomach, very emotional, hard time in school with reading and math! And continues to gain weight I have 2 other daughters and they are perfectly thin and they eat the same food!!

Please help anyone with advice for me/////? I guess i need to know what to do from here ???Thanks Tori

Email Tori

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Wednesday, November 19, 2008

Michelle (ingledoo), undiagnosed bio

Dear Cushies, (if I have spelling boo boos please over look them, I don't have the spelling gene)

I would like to say that I was new on my road to a diagnosis, but I am not. I begain to complain to my Dr's in my 30's (I am 3 weeks away from 50th B-day) about my symptoms. I have led a very stressful life from the start. No need to go into details, but it has taken a life time to heal from them. One day (it seemed like over night) I felt extreme weakness in my legs and arms.

I begain to have dizzy spells and began to gain weight for no reason. A very strange fatty hump begain to grow at the base of my neck and my periods began to disappear. I don't mean I missed them, the just began to become very light and last only one or two days. And I became infertile. Happily I had two children and I was alright with the news.

I started to have high blood pressure (sometimes, it goes up and down for no reason). My Dr. said I must be forgetting my meds. I DO NOT! She (I have two Dr's same office, one male other female) gave one of what was to be hundreds of eyebrow raises that mean your lying to yourself, if not coming right out and saying it. In the begining I had all my weight bulging around my middle. People used to say "you have such nice legs" (for a fat person).

But after so many years of extreme waekness in legs and arms and not being able to be as active as I used to love to be, fat begain to advance over the rest of my body as well. My Dr's kept telling me to diet and stay away from sweets. No matter how hard I would tell them that I don't eat many sweets (I like a goodie now and then, but I never have them around as a rule) they would tell me that I had to be pigging out and I was just in denial. I can't describe the frustration and helplessness I feel when no one belives what I'm saying.

Finally My male Dr. believed me enough or just wanted me to be quiet about it and sent me to the Endocrinologist. I had to wait for months to get there. I had been looking up my symptoms on line and Cushings came up over and over again. I cried when I read all of my sysmptoms facing me from the screen. I have everyone!

I have lost over half of my hair, mostly on top. I have purple marks on my side, I have blured vision, I have to have my glasses changed every two years and I still can't see. I bruse easily and I heal very, very slowly. I had a hernia operation and the wound opened up and it took 5 months to close. I have the most embarassing hair on my face, I can grow a full beard, and I have a thick hair line on my belly. I lactated for 15 years after the birth of my son. For no reason. I live with anxiety every day of my life. I have off and on depression. I have tried every class of anti-depressent with bad side effects. I will never use them again. I can't sleep and I'm so tired. I can't raise my arms for more than a minute before they literally fall down on their own. My blood sugar is up a tiny bit but as i said, I don't eat many sweets and there is NO diabetes in my family at all.

At last I found the answer I have been seeking for for years. And now I could have some hope. I went to my first Endo appiontment and told the Dr. that I was at the end of my hope and I was preying for his help. After he examind me and took my history he told me he believed that I had Cushings too. At last someone who believed me, I cried buckets. He ordered a AM Crtisol and a 24 hour urine. And he told me to come back in 3 months! In the mean time the AM cortisol came back to my Dr's office, NEGATIVE. I was dumbfounded. All I could say to my Dr was, I don't understand? What about the weakness in my legs and everything? She said, and I still hurt to this day: TOO BAD YOUR LEGS WEREN'T WEAK ON YOUR WAY TO THE FRIDGE! I wanted to die. The one 24 urine came back normal too.

I have lost all hope. Then I remembered that the Endo Dr. said he would find the problem and I still held out some hope for help. When I finally got back to see him he said, I the the test were negative and I don't have Cushings, good-bye and don't let the door hit you on the way out. I will be honest here, the thought I had in my head was "I guess I need to die so they can disect my pituitary to find the tumors" an awefull thought huh? But that's how low and dejected I felt. That was last month and I know something is very wrong with me. I have lost who I am and my ability to be a part of life. I know with all that I am that I have Cushings. It is the only thing that answers every one of my symptoms.

Read about it I have found that many Cushies have gone through what I have, but I have no-one to turn to and no Dr. will believe me after their test prove to THEM that I'm nuts. If anyone knows what I can do, please please help me. I do not have money and can not pay for tests myself. I need a Dr. to refer me in Canada. I'm putting it out there for help.

Thank you all,
Michelle in Richmond BC

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Monday, November 17, 2008

Ryley (Sunshine), possible adrenal bio

I am currently in diagnosis - Finally got fed up and met with an endo. who is wonderful - she let it slip that she thinks that my problems are not only associated with my thyroid (hypo) but that I have an adrenal problem. She set up a myriad of tests which I have subsequently completed (in a record two days) and have done what one should NEVER do - go look up symptoms on line.

I have ALL of the sympoms for a Cushie - from the over emotional bit to the hump - Just Lovely! I just wanted to drop a note as I am feeling very overwhelmed by all of this. I realize that I have not been diagnosed, am only at the testing phase and should just calm down and be rational but it is harder than it appears.

I am alone with this and it is freaking me out. My family is in another state, and, when I talk to them I feel I need to put on a brave face, I always have when major issues occur, don't know why I do, I just do. I know that if I asked a family member to come to me they would, no questions asked but then I know they would just be watching me like a hawk the whole time for G-d knows what to happen.

All of your posts have been extremely helpful to me and are helping me to bolster my spirits. It is heartening to know that I am not a crazy person and that there are support systems out there for us. I will write again when I get a diagnosis - Hoping for the best!!

Email Ryley

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Saturday, November 15, 2008

Clarke (mutley), undiagnosed bio

My name is Clarke. (stupid name i superman or something?). Im 21, and I currently live in small city of Norwich in England. Im training to be an adult nurse, and im in a long-term relationship with the girl of my dreams.

It has now been nearlly 2 years since i first began to notice the small stretch marks appearing across my shoulders. Coincidently , 8 months prior to this I i had ruptured my achillies tendon, and had to use crutches for nearlly 6 months prior to this, so i assumed my sudden muscle growth was due to this. However, after i made a full recovery, and stretch marks began to sliver down my arms and across my chest, i began to get suspicious. ' Its a gentic problem...a predisposotion to striae, just keep your skin moisturised' said my GP. Ok, looking back maybe I should have been more pushy. I was nearlly half way through my training as a nurse, I should have been aware that a young, healthy 19 year old who weights just under 13 stone should not be getting stretch marks!

Well the months rolled passed, and my clothes became tighter and tighter. I would try diet after diet, and nothing worked. I even joined a weight class with my no avail. I was getting very self-conscious now. During the summer i didnt take my shirt off in front of anyone, for fear of teasing about my stretch marks, and the spare tyre appearing round my waist. I hated this, and I was beginning to hate myself. Soon i weighed 14stone 2 llbs, the heaviest I have ever weighed. I looked bloated, and I began to notice stretch marks around my thighs and legs. This was getting riduculous now! In September 2007 I fell ill with glandular fever. This was horrible. I took nearlly a month out from my studies due to EXTREME fatigue. (little did i know at the time the excess cortisol streaming through veins was exacerbating my already strained condition). Things went suddenly downhill from here.

My healhy sex life began to suffer. 'Im tired' - is that really a thing the GUY says?! Thank god my girlfriend is so understanding. She is an angel to me. The weight piled on, topping 15 stone by the beginning of 2008. I would have sudden onsets of wanting to starve myself, wanting desperatley to look thin. I would stare for hours in the mirror, pulling at grotesque areas of fat. I have two huge stretch marks around my shoulders. I looked as if i had been mauled by a tiger. I began to feel breathless on mild excertion. i was a pretty healthy guy a couple of years ago. My girlfriend would even make fun of the way my hip bones stuck out I was so skinny! How i pined for those daysa again...

Another trip to the GP...'Asthma'. ...Ok, well ill try the inhaler...hmmm...well it helps with the breathlessness a bit, but then bronchodilaters do tend to, you know, help with breathlessness. It was the weight gain and stretch marks i was concerned with. Next...Chest aching, especially when I had been on my feet alot. The symptoms were becoming more common. I would wake up in the night and feel my heart palpitating. i would sweat, and the fatigue in the morning and evenings was extreme. I began to take caffeine pills like sweets. August 2008, another trip to the GP. I sat down, took my shirt off, and bared all.

'This is indicative of an 18 stone man or a pregnant man, not a young lad like yourself!'. The doctor was brilliant. He was a new one I has registered with after moving house to another location within Norwich. An outpatient appointment was made for me at the hospital. At last...soemthing is moving along! I had glanced over the issues of cushings in my training, but to no great detail. After boffing up with all text books, I was fully aware of the condition and its implications. I think the book knew more or described exactly how i was feeling.

After 4 24 hour urine cortisol tests (all indicative of cushings) and dexamethasone suppression test (inconclusive), I have been referred for an inpatient stay the hospital for further tests and an official diagnosis. Finally a direction. I will keep people posted on how I am doing, and try and get some photos on this thang.

Email Clarke

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Wednesday, November 12, 2008

Melissa (Melissa), undiagnosed bio

My 6 year old daughter has been showing symptoms of Cushing's. We are currently waiting on results from the 24 hr urine test.

Last May she put on weight in her belly overnight. Recently all the weight is going on around her face and neck. The reason we first went to the doctor was because she had a rash on her forehead. The doctor told us that is was acne and there must be something going on. We have gone through numerous hormone tests, but nothing conculsive yet.

I found some info on the web about Cushing's and suggested this to the pediatric endoc dr. After begging for another appointment she agreed to see Gracie. I showed her the pictures from Halloween 07 and 08. She was blown away by the difference in her looks. That's when she agreed to do more testing.

I am looking for any moms out there that have gone through a similar experience. Thanks!

Email Melissa

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Friday, November 7, 2008

Lindsay (mamaleeisme), undiagnosed bio

My name is Lindsay and I found this site in an attempt to figure out what is wrong with my six year old daughter.

I came across Cushings and I am sure that this is what she has. She is 101 lbs and has gained 40 lbs of that in the last 6 months. She has a round (completely circular) face, a significant buffalo hump, her midsection is much larger than her arms or legs, she has behavioral, social and learning disablilities.

My husband's cousin had a pituitary tumor that caused cushings and while I know that cushings is not usually genetic, it is the only thing that I have found that could cause all these things. The endocrinologists that we have seen have been less than helpful and they don't even seem concerned. I am so frustrated and I hope that maybe I can find some help on here.

Email Lindsay

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Liberty (libertybell), undiagnosed bio

My name is Liberty, so where to start? I am 21years old and I live in Melbourne Australia and am recently married. I am currently being tested for Cushing’s and go to see my doctor on the 11th of November to get my results of 24hr Urine test.

So where did it all start, well I have always been chronically tried I remember being in my final years of school and having to bribe myself to get out of bed I told myself the sooner I get out of bed the sooner I get to go back to bed. Then the eye trouble started, I had been having these fuzzy episodes in the corner of my eyes. Then one day last year I had and episode and when it stopped I was left practically blind. Not very good for a 20yr old. So after like a millions tests and no results my eye doctor chalked it up to shit happens. Then the weight stared to go up, no matter what I did I just kept putting on weight, 40 kilos in the last year and a half. Then my husband noticed a hump on the back of my neck. And then the dark stretch marks started to appear. My face has become puffy my ankles have swollen and chronic back ache.

So I went and saw my GP, he tested my thyroid and a number of other things, he knew it was hormonal just didn’t know what was causing it. So he sent me to a hormone specialist and he suggested Cushing’s. I was almost excited about the possibility of having a name to put to all my problems. After so many tests, finally a name to put to all these symptoms.

So will be getting my test back in less than a week. Will keep posted!

Email Liberty

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Thursday, November 6, 2008

Megan (meggers317), undiagnosed bio

I am a 25 year old woman from MN looking for answers!

In high school I started to become concerned that I had not gotten a period yet so during my senior year I went to the dr who told me not to worry about it and prescribed birth control pils. It worked, my first period lasted 4 weeks. I had some pelvic/lower back pain so I had a pelvic ultrasound done and it indicated I had PCOS. And that was the end of that conversation. My dr told me not to worry about it until I wanted to become pregnant.

In 2006 after I had graduated from college and moved home I noticed I had gained about 20 pounds. My weight fluctuates up and down 10-20 pounds so I din't think much of it. Late 06 early 07 I had sudden and severe anxiety and depression. I couldn't drive my car without having a panic attack about whether the light would turn red and would I have enough time to stop. I avoided going out in public because I thought everyone was staring at me. I would cry about everything and anything. I was put on effexor and got immediate relief although I eventually detoxed from it a year later (not pretty, this is a very addicting drug!). Within the next 6-9 months I gained 50-60 pounds. It felt like overnight and I couldn't explain it. I've never been skinny but I was always curvy, not fat! I went on walks everyday on my lunchbreak, used an elliptical for an hour every evening and hadn't changed my eating habits. My hair became coarse, would break mid shaft, and in some areas simply fell out. This was probably the most devastating, as I have always had shiny, healthy, beautiful red hair that strangers would compliment me on. I had embarassing pink stretch marks on my belly,hips, boobs and upper arms (the areas I gained all the weight). Round puffy face, whiskers on my chin, oh yeah and did I mention a complete loss of sex drive...nada.

I finally went in to the doc this April 2008 to address all these issues but left with a new one... I had a large tumor involving the whole left lobe of my thyroid. It was benign and my thyroid was functioning despite it but due to its size it was removed. Also during this time I found out I had elevated liver enzymes, white blood cells, and C Reactive Proteins. No idea. Meanwhile I was just living with my symptoms thinking I had PCOS and there was nothing I could do about it.

In September of this year I read an article in Reader's Digest about a woman who was misdiagnosed as PCOS but later found out she had Cushings. The only time I had ever heard about this before was in a college Anatomy class. I was shocked to find so many similarities in our symptoms but got stuck at the Buffalo Hump. I brought the article home and had my fiance read it. He said yup that's you! I jokingly asked if I had a hump on my back and he said yeah I thought you knew that! OMG I just about hit the floor. I ran to the mirror and sure enough I got a decent size hump back there. Unbelievable.

So now its November and I've finally made an appointment to go back to re-address the symptoms and push for diagnostic tests. I have accumulated more symptoms: skin tags, weak arms and legs, bug bites that take months to heal, eczema on legs, the list goes on and on... I am so hopeful that I can get some answers.

While I don't want Cushings, I would rather have that than PCOS because I feel like PCOS is a lifetime sentence of fat and fertility problems. At least with Cushings I feel like I can get it taken care of and return to some normalcy. Demented? Maybe but I would give anything to have my old body and beautiful healthy hair back...and my fiance would love for me to bring some sexy back :).

Keep ya posted!

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Tuesday, October 28, 2008

Laura (lauralu), undiagnosed bio

I am 30 y/o female who is having a frustrating time.

Ithink I have Cushing's but can't seem to convince someone to test me for it. I just keep going back to my doctor (and various other ones). I have been tested (repeatedly) for so many different things. I have high blood pressure, weight gain, upset stomach, depression, and (in the last year) 1"-4" stretch marks on one side of my belly button, red face, my chin is rapidly disappearing into my neck,.

Since July, I am having muscle weakness, especially in my legs, and my once regular period has gone from 4 wks, to 6 to 7. My doctors are chalking my issues up to the blood pressure meds I was taking and "stress".

I am SO frustrated! I have asked for a cortisol test and been told that I don't need it, because Cushing's is rare. I finally convinced a clinic doc at the university to do it and the lab ended up doing the wrong one (can't find the doc again).

Email Laura

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Penny, undiagnosed bio

I don't know where to begin... I was just recently suspected of having Cushing's. I go to Vanderbilt in Nashville, tn. in Jan. to have more tests run.

My Cushing’s I suspect was from an overdose of Kenalog (a steroid) given to me by a Pain Clinic doctor. I was getting monthly injections for a pinched nerve in my lower back and a bulging disk in my neck. After a couple of treatments I began to notice all these symptoms, 1st weight gain, I have a Moon face, the hump on the back of my neck and I look 12 months pregnant. I am losing my hair, I have terrible stretch marks on my breast, stomach, arms, inner knees and upper legs (I am 48 yrs old and I have never had stretch marks even when I was 9 mos.pregnant in 1981), and I have high cholesterol even with medication, high blood pressure that is not controlled with 3 medications. I tried to tell my reg. doctor about these symptoms and after blood test showed my hormones were normal I just lost it and was crying trying to get him to believe me and ask him if he thought I was crazy.

My skin looks very saggy and old and bruises easily, I have to constantly pluck the man hair off my face and I have given up on wearing make-up or fixing my hair because of the sweating and my hair loss. I breakdown a lot crying uncontrollably and everything makes me sad. I have no patience’s and I am very irritable, short tempered and I have become a hermit. I try not to leave the house. I don't want anybody to see me & I don't want to see anyone. If I happen to see someone I know they don't even recognized me or they don't even see me. I just want to be left alone I don't even want to talk on the phone.

My tail bone hurts so bad that I can only sit up for short periods of time. I cannot enjoy my grandchildren and all I say is that Nana doesn’t feel good, they don’t understand because we use to do everything together now all I can do is lay around all of the time. I am so fatigued it is tiring just to go to the bathroom and bathe. I get so restless and the pain never stops so I just cry.

These symptoms are on top of and combined with all my other illnesses and medical conditions. In 1998 I had my first migraine; it lasted 7 days I wanted to DIE. A few years later dealing with the migraines, I had carpal tunnel surgery (both wrist), 1 shoulder surgery, a hysterectomy due to endometreosis, and I became depressed with anxiety, & panic attacks. I already knew I had arthritis (knees, elbows, wrists, hands, hips, shoulders) bursitis (hips), tendonitis, embarrassing sweating, RLS, IBS, Fibromyalgia, muscle tremors, loss of concentration, memory loss. It took a trip to the ER with my lower back and several years before I could get my doctor to get a MRI and x-rays to show that I had degenerative disk & bone disease. Plus I have to deal with the side effects of all the medicine I am taking. I am constantly in a state of pain, it NEVER EVER goes away, Right now my back & shoulders are killing me after just a few minutes at the computer my shoulders & neck began to draw from muscle cramps and knots, tomorrow it may be my hips, legs, hands, and feet it never stops. I keep my heating pad on at all times.

The past few months I have had pain meds to help though not much, before that it was 2003 when I had pain meds last. I could not get my doctor to give me any pain meds yet he would send me to a pain clinic to get them. I am up all hours of the night and don't sleep well at all or I sleep a lot.

I can't get anyone to believe that something is wrong with me. I finally saw an Endocrinologist in July and I now have to wait until Jan. to give the steroids time to get out of my system. Do they ever leave your system? The doctor at the pain clinic refused to take any responsibility for her mistake. She will not even tell me exactly what she injected me with or how much and at first refused to give me a copy of my medical records.

Then I had emotional stuff I was going thru at that time. People may think that hearing about your personal life has nothing to do with it but they are sooooooooooo wrong. You mental health suffers along with your physical health. I had just divorced and got mixed up with a very bitchy, narcissistic man, he thought he knew everything and we had a very distrustful, stressful relationship (a BITCH EX_WIFE and daughter didn't help any) I moved in and out several times and stupidly thought it would be different each time. The 1st time I suspected him of cheating I became OBSESSED with catching him. I became so messed up I thought I couldn't live with out him. My heart would sink in my chest 1000 times a day with anxiety and dread. He always tried to lie his way out and I learned to look at him and know when he was lying. I finally had enough and moved out for good.

During all of this my 19 yr. old daughter became pregnant; I became a grandmother before I turned 40 yrs. old, she and the baby's father were having problems and he left her a few weeks before the baby got here but came to his senses later. Then when Jackson was 3 she again became pregnant and was trying to go to college I tried to help all I could but my boyfriend didn’t want me to spend any time with anyone other than himself then I became distant from my family for approx. 9 yrs.

I feel like no one believes me and everyone thinks that I am crazy and lazy. Can the doctor be held responsible for giving me too much steroids? I was taking HRT and Nasacort but my reg. dr. said the steroids in those meds were not enough to cause Cushings. I had some steroids when I had my surgeries but that was 5 yrs ago.

Thanks for reading my story. I’m sure I left things out. I’ll try to write more later.

Thanks for reading my bio.


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Monday, October 27, 2008

DaniLyn, undiagnosed bio

Hi. My name is Dani-Lyn and I am 20 years old. I found this site after doing some researching online.

I need some advice and support. I weigh 250 pounds, my face is round, there is a bumb between the upper part of my shoulder blades that keeps getting bigger, I gain weight constantly, I am tired all the time and my muscles are week.

I want to be tested for Cushings but I am afraid my doctor will laugh at me. What should I do?

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Elaine, undiagnosed bio

Hi my story is so much like all the others that I have been reading on this site.

For the last several years I have been feeling bad, I am tired all the time. I have gained 50 pounds. I have always had a low body temperature and feel the cold more than most people;however in the last 3 years or so I can't take extreme heat either. I am always either too hot or too cold. Sometimes I sleep for 12 hours and other times I do not sleep at all.

This year I have had people tell me that my personality has changed I am much more aggressive than before. I also look bloated around the face and belly. People keep asking me am I pregnant because my stomach is huge!

In the last 12 months my hair started to fall out. I got an peptic ulcer, been diagnosed with slow digestion, sleep apnea and arthritis of the spine. I used to be able to walk 4 miles in 40 minutes but now I can barely walk a mile. My short term memory is bad and getting worse all the time. I find it really hard to focus. I have had 2 upper respitory infections in the last 10 months which is unusal for me. Also I have dermatitis on my back which just started 4 years ago.

I thought maybe I had a thryoid issue so I went to my GP who sent me for bloodwork. She tested my TSH, T3, T4, ACTH and Cortisol. My TSH's came back normal (2.7) but my ACTH and Cortisol is high. I don't have diabetes or high blood pressure although my stress level is through the roof most of the time. Anyway my doctor thought that the ACTH and Cortisol was too high and she asked me if I was getting more headaches. I have always suffered from migraines but in the last couple of years the headaches have gotten worse. She thinks I may have Cushings disease.

My doctor was so concerned that she is sending me for an MRI and I got to a referall to an endo who I will see in two weeks. I will post an update as soon as I know something.

Email Elaine

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Alicia, undiagnosed bio

Since 2005 I have been seeing Doctors about my feelings of exhaustion, sweating, weight gain, abdominal obesity and Thyroid problems.

I was initially diagnosed with HYPERthyroidism and put on Methimazole. My T3 and T4 TSH all plummetted and then I was diagnosed with Graves Disease. Had a battery of tests including Biopsies of a nodule in my Thyroid. No cancer but they said it was Graves.

The weight gain increased and the Buffalo hump got much bigger. My hair started falling out, facial hair appeared, My face looks like a pumpkin and I have stria on my upper right shoulder. I have an old nursing injury to my neck and I was in a lot of pain.

Went to the Neurosurgeon who ordered an MRI of neck. When he saw me and the results he said "you have 2 herniated cervical disc but I wil Not touch you in the OR b/c you have cushings from what I can tell".

Sent me to an endo here in CT who did all the labs and when he met me he said" You look like you have Cushings". All lab work and Urines neg. altho' I never had the saliva or midnight cortisol bld work. The neurosurgeon sent me on his own to have an MRI of the brain with contrast. It was neg for a tumor however, he doen't believe the results.

I am so sad and tired of every lab WNL yet every doctor so far ( 6 to be exact) believe I have Cushings.

What in the world can I do?

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Sunday, October 26, 2008

Mae, undiagnosed bio

I am now 34 years old and have recently moved to a new state. I really don't know when I started to show the signs. I have had migraines since I was in junior high. I used to have dark stretch marks and major mood swings in high school. My periods were so very painful and heavy I would bleed through a sanitary napkin every hour and a half. Once I graduated I went to the health department and asked to be placed on BC pills. I was eighteen, planning on having sex, and wanting to be safe about it. Within the next three months I put on about 60 pounds.

When I first moved to Virginia I was weighing about 135 pounds on a 5'6" frame ever so happy in a size 8. By the following January I was almost 200 pounds and in a size 20. I went from wearing form fitting clothes to wearing sweat pants and t-shirts as large as I could find them. When I asked the health department about this, I was told that you have to expect to gain weight when you first start on the birth control pills. I was an active 18 year old, I didn't over eat, and I was a personal nanny to a very active child. I took her on walks daily for at least an hour.

Things happen, as they always do. My fiance and I broke up, I moved to another part of the state, and pretty much ate only enough to make sure I was getting some nutrients into me. Depression set in, and my whole being seemed to change. I went from being an outgoing, happy center of attention to an brooding and depressed loner. I didn't even want to be around my family (whom I lived with at the time). I went to the doctor again. I wasn't planning on doing anything, so I stopped taking the birth control. When I asked the doctor about the weight loss, I was told it would fade within time as long as I worked at it.

Two years go by and I worked at it, and 20 pounds went on their way. The depression was starting to ease, I felt some of my old self returning. I decided to move it along and branch back out on my own again. I vowed to take back two years of my life. I was out going again, I WAS ME! I was eating healthy, only getting fast food at the most, once a week. Eating more salads than anything, and county line danceing three to four hours (non-stop) about four times a week (one day a week was for a demonstration team). I wasn't loosing any weight. As a matter of fact, I had started to slowly gain it again. I also had my first bout with kidney stones. I met my soon to be husband almost two years to the day of vowing to get back my lost years.

Since My husband I have married (9.5 years now), my weight has been a large roller coaster ride. I have never been back down to the 180 I was when we first met. I haven't been below 200 since then. I have maxed out at 260 so far. Each time I feel almost like my old self, I pick up the hard dieting and working out 4-5 days a week. I love weight training. Not the body building kind, but the lean muscle building kind. I will start out loosing weight and I will keep it up. I will loose about 10 pounds before the gain starts. Then I will tell myself that the gain is muscle and it is to be expected. 20 pounds later, when I am 10 pounds more than when I started, the depression starts to set in. I keep working at it with tears in my eyes and I no longer enjoy it. Finally, when the next 5 pounds hit, I just give up. All of this takes place over about a 4 month period. The only time there was a repreve was when I was pregnant with my daughter. I went back to feeling like myself again when I was pregnant. I also lost 25 pounds while I was pregnant. I was pregnant for 6 months (she was 12 weeks early due to pre-eclampsia).

Kidney stones started happening more frequently. UTI's (which I had never had before being pregnant) started happening about every 6 months. I had been diagnosed with endometreosis, and the ovarian cycst I had been diagnosed with at 17 had come back. I was diagnosed with depression, and was always being told by the doctor that I needed to loose weight. No matter now many times I told him that I tried only to gain it, it was like he never heard me.

My break through came about a year and a half ago. I was reading one of my mother's Reader's Digest's she had left at my house. I was shocked. It was almost like reading my own story. That night I hopped on line and came to this website. There was a diagram hand drawn of what a body could look like with Cushings. While I was reading the symptoms, my husband walked in. He asked when I had posed for the drawing. I broke down in tears. My wonderful husband came over and held me while I cried it out. Then listened as I explained it to him. I still didn't have the courage to ask my doctor about it.

The following month, the recurring UTI's started. I was getting one every two -three weeks. Then my mind started to go. Like one of the bio's I have read here, it felt like there was an alien in my head. I could see myself acting in ways that weren't me. I couldn't even interact with my daughter without having flashes of anger. The depression medication pretty much stopped working, and there were times I couldn't even stand myself. I finally found the courage.
I made an appointment to see my PCP. Since there was nothing 'wrong', the earliest they could see me was a month away, I agreed. I nearly called back to cancel the appointment at least three times. I kept it. He wasn't very supportive. I was overweight and fat people like us have to find a way to loose it was pretty much what he said. But he would order and 24 hour UFC test. and we would go from there. Guess what? It was high. He refered me to an Endo. Wonderful Endo. I hated leaving him.

I went to see Dr. Barnes and he listened to me. I took pictures of me for every year since I was 18(which took a while to gather since I haven't really had any pictures taken of me for the last 8 years). He asked me questions. He listened to me. He made me feel as if what I had to say was important and needed to be heard. Then we did the exam. He talked, measured, asked, and explained the whole time. He looked at the hair loss, the hair that was growing where it shouldn't, even the stretch marks that have long since faded to white (but once in a while flair red). He ordered a dexa test. Then he put me on blood pressure medication (my blood pressure had been creeping up for about a year), started me on Fortamet to help ease some of the symptoms, and ordered me back in two weeks. The test came back only slightly elevated. Enough to be over the norm, but not eoungh to confirm a diagnosis. He ordered a midnight cortisol test (it was now about almost 2 months since I first saw him). The results were on the high side of normal. He wanted to keep an eye on me. He couldn't diagnose me, but he felt that my concern was warrented. He wanted to keep on eye on me. I was to see him every three months. If my symptoms were to come back, then I was to call him immidiately.

Four months ago I had to say good-bye to Dr. Barnes. I moved with my husband when he retired from the military. I am now back to the drawing board. I have a wonderful PCP now (which I didn't before). She listened to me and refered me to an Endo. I left the new Endo's office very exasperated. She walked into the appointment and didn't even shake my hand. Strike one. Next came the physical exam. She felt my thyriod, one point in her favor. That was all she checked, strike two. Then, right there told me that I was diabetic (go figure that the last blood test I got said my sugar levels were excellent) and I had PCOS. The woman had only known me for ten minutes, if that, and was diagnosing me without seeing blookwork results or anything else. Third and final strike. I am still so put off by this experience, I haven't gotten the nerve to go back to my PCP and ask for another referal. The Endo did do a dexa test, and said that according to that test, there was no way that I could have Cushing's and that was the end of it.

Since then, I have had my gall bladder removed after having a gall stone pains for the last 4 years that no one could find. I also have two new kidney stones. One of them about a half an inch in diameter (again). The fatigue has returned. Insomnia is hitting again. Depression is setting in. My temper is starting to flare for the slightest wrong. My concentration is failing. When I changed the chanel and found the Mystery Diagnosis on about Cushing's, I felt that was God's way of pushing me. So, when the week starts, I will be calling my PCP and see if there is another Endo she can refer me to. As the song goes, 'Here I go again on my own".

Email Mae

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Thursday, October 16, 2008

Jana (JanaL), pituitary bio

I am a 28 year old Canadian female diagnosed with Cushing's Disease in early May of this year (2008).

I had been through a year of MANY tests, and different specialists. Finally, an Endocrinologist diagnosed me with Cushing's and I was in for surgery on May 22- to remove the 6 mm tumor on my pituitary. Surgery was "easy" compared to recovery. I pretty much slept the summer away, and even had an ambulance ride back to emergency after they released me from the hospital with NO replacement steroids three days after surgery. I felt dizzy, sick to my stomach, light headed and tired for a long time.

However, almost five months later, my life has completely changed. My blood pressure has gone down, and I am off my meds, I got my period again (after not having it for over a year), my face has slimmed and my acne has cleared up. I no longer sweat from my arm pits and forehead. I have lost 20 lbs. and still counting - without even trying as hard as I had to before - to never see any results. I now have enough energy to chase after 5 year old children all day, as I am a full time Kindergarten teacher.

I owe this change in lifestyle to my surgeon Dr. Michael West, who did an excellent job on my surgery at the HSC in Winnipeg, MB. I am on cortisol steroids right now, and have my blood checked every month, to see if I am making it on my own yet. So far, I'm not. I did have a follow-up MRI that showed the tumor was completely removed, and there was no swelling or bleeding.

I feel so good. And hope that anyone that has this can recover as well as I have. It was hard finding the cause, but worth the fight.

Email Jana

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James (JamesC), undiagnosed bio

My name is James and I am almost 35 years old.

It has been recently suggested to me that I may have Cushing's Disease/Syndrome. I went to Google and checked this out on Wikipedia. What I read there was so frightening that within 48 hours I had called my Endocrinologist and made an appointment. That appointment is scheduled for tomorrow, Oct. 16, 2008.

I have alot of the symptoms of this disease. My obesity is centralized to the trunk of my body. I have the skin discolorations and stretch marks associated with this. I have always had a problem with weak or fatigued muscles. I have alot of pain in my back and neck and shoulders. I have high blood pressure. I have migraine headaches. My legs and ankles swell but I know that is more related to the obesity. I sweat quite alot especially when I get over exerted. I have had an MRI on my pituitary but was told that it looked good and not abnormal. I have performed the 24 hour urinary cortisol test twice but can't remember if the results were high or low. I have extremely low testosterone and vitamin D levels. I could not figure the vitamin D levels out for the life of me. I do not seem to have any bone issues yet. I am about 5 ft 10 inches tall and my weight is above 450. This makes it very difficult to weigh myself or keep an accurate diary of weights. I have always felt that I was just fat and that it was my fault for overeating and not exercising along with not eating healthfully.

I am glad that RS told my former girlfriend to mention this disease to me. At first I was not going to look into it but I did. I am grateful to Mary O. for putting this site together and for all of the positive feedback that I have gotten already. I am anxious but nervous. It will be good to know that there may actually be a reason I am the way that I am. (not just the fact that I am lazy, because I know that I am)

If this is my journey to take, I know that you all will be right there with me. It is a relief to know that I may actually have a route that can change my life for the better because if something doesn't change, I don't see much of a life there.

Thank you for taking the time to read and share in my experience. Thank you and GOD BLESS YOU ALL!!

Email James

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Monday, October 13, 2008

Kim (Kim) , undiagnosed bio

If anyone can help I would be greatly appreciative

symptoms started in 2002 , symptoms were high heart rate, heat intolerance, exercise intolerance, tremors, muscle weakness, anxiety, insomnia my symptoms have now increased thru the years and now include the above, hirstuism, hair loss, osteopenia and only32, muscle weakness, myopathy, joint pain due to cartilage loss, pcos

-I have had thyroid checked repeatedly over last six years and it has always come back normal. Thyroid antibodies have also come back normal. TSI antibodies came back slightly elevated one time, but have since been in the normal range.

-I have a multi nodular thyroid, I had a thyroid scan with uptake and it cam back high normal

-thyroid biopsy-normal

-did not suppress on overnight dexamethasone suppression test (1mg), or 3 day dexamethasone suppression test (4mg)

The results of my test are as follows-

baseline off of Dex.
TSH 1.39
Free T3-3.2
TSI 1.1
Intact pth 27
DHEA sulfate 152.3
Test 67.0
Cortisol 20.8

After 3 day dexa test equal to 4 mg dexa

DHEA sulfate 114.2 (98.8-340.0)
Testosterone 88.4 (14-80)
Free Testosterone 0.77 (0.12-0.66)
Testosterone % Free (ca;c0 0.87 (0.20-0.70)
Cortisol 12.1 (3.1-22.4)
ACTH 26 (9-46)
The results of this test are very puzzling... My testosterone went up while being on dexamethasone and my ACTH remained unchanged and my cortisol did not suppress.

-Had mri of adrenal/pituitary/cat scan of lungs all came back normal

-24 hour urine cortisol always comes back high normal



-Dexa scan shows osteopenia

Thank you,


Email Kim

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Thursday, October 9, 2008

Marcia (Marcia K), undiagnosed bio

Hello everyone! I have been diagnosed with PCOS for 15 years. I am 48 years old and have many of the cushing's symptoms and have had them most of my life. I am on appropriate medicines for PCOS due to research I have done on blogs like this one.

I am here to learn more about Cushing's as I believe I have this and my appointment with an endo is 6 weeks away and I want to go to this visit with much needed knowledge.

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Tuesday, October 7, 2008

Mac, undiagnosed bio

I've posted before but I think this is my most complete symptom list. I'm a 30 year old female, happily married...with no conclusive results on anything. The only "positive" test I've had for Cushing's was a salivary cortisol midnight cortisol was nearly triple what it should be...same at noon...but it's below normal at 8am and 4pm. I've been tested at UVA and dismissed after two tests...Dex suppression and ACTH stimulation. It's sad and depressing, and the more I read and research, the more convinced I am that I have Cushing's and/or a pituitary tumor. Any advice is more than welcome. Thank you! :)

Major Concerns:

1. Fatigue
-my entire body feels heavy and sleepy, often achy, as though I have the flu. I've tried to see if there's a magic sleep number...but whether I've had 6 hours or 11 hours of sleep, I'm constantly tired. From Nov-2007 thru April 2008, I had chronic insomnia, complete with Restless Legs.

I'm back to sleeping easily and quickly at normal evening hours, yet I still feel like I was up all night.

2. Blood Sugar
-sometimes would be incredibly low in the early hours of the a glucose monitor and on two occasions in March and April, it went below 20 and I had a full body seizure and passed out.

3. Blood Pressure
-was always 110/70...suddenly became 148/98 or 100/60 depending on the day

4. Weight
-complete inability to lose weight despite repeated efforts (including nutritionists, personal trainers, Medifast, Optifast, Atkins, Jenny Craig, Weight Watchers, phentermine, and food allergy testing with subsequent elimination of all possible food allergens)...I have central obesity, many purple/pink stretch marks, and a slight buffalo hump. I am 5'6 and 205lbs...not huge but certainly not slim or healthy. My body type isn't like anyone else in my family. My sisters are taller and both are slim. My father is very tall and slim. My mother is my height and overweight, but it's completely due to overeating and lack of exercise. Unlike me, if she even cuts back on a few desserts a week she loses weight quickly.

5. Absent Libido
-my libido was always in full swing and now it is totally gone. I don't believe it's due to anything psychological. It's just upsetting to not be able to have any interest. It's not just that I'm tired or don't feel good...I stopped completely craving sexual contact, and my body seems hyper-sensitive. I love my very handsome and passionate husband dearly, and still love the affection...but it's like a switch was completely flipped. I have zero interest.

6. Infertility
-although we're not looking to have a child right now, my husband and I are practicing Catholics and haven't used any form of birth control since our marriage 18 months ago. I've not gotten pregnant. I've only had two sexual partners in my life (including my husband) and no gynecological issues, save for one large ovarian cyst in 2000. I occasionally have pain in my lower left side mid-month.

Minor Concerns:

1. Easy Bruising/Cuts
-I take forever to heal; profuse and prolonged bleeding from even the smallest shaving nicks. Again, this was terrible for several months and has been better since June 2008.

-I also get strange sores on my tongue that don't hurt like canker sores

2. Muscle Loss/Weakness
-lost muscle strength in hands and upper arms; cannot squat and get up without assistance; climbing stairs causing heavy fatigue/cramping in my legs as well as a racing heart and breathlessness, despite going slowly. I used to enjoy giving my hands have no stamina and I can't squeeze very hard. Even giving my husband a hug, he notes that I can't hug tightly at all anymore.

-I feel like I have carpal tunnel in my left hand at times, with shooting pains and sometimes tremor, and yet I'm right handed and use my left only to eat/brush my teeth.

3. Voice Lowering
-I lost 1/2 octave off my upper register range (I am an opera singer & voice coach)

4. Acne
-after a lifetime of clear skin and excellent skin care (including regular facials, daily regimen, and expensive products)...I have red blotchiness that occurs in my very pale skin. Tiny pimples are constantly forming at my hairline as well. I went to a dermatologist who gave me a prescription topical cream that does nothing.

5. Under eye dark circles/lines
-sudden dark circles and bags under eyes as well as lines (despite the fact that I am only 30, take terrific care of those areas, avoid allergens, always wear sunglasses, never rub my eyes, and they don't run in the family)

6. Dental problems
-my teeth are falling apart. Despite 2 cleanings a year and regular check ups as well as brushing 3x per day and regular flossing, my teeth have broken, shifted, and I need 4 root canals. I've already had 2 this year. Color is also yellowing.

7. Peripheral Vision Loss
-occurred at 18 after the onset of menstruation and a weight gain of 60 lbs within a few months. I can see with contact lenses but my vision frequently blurs or get fuzzy. My prescription has only improved over the years, though. I am told the eye is healthy.

8. Hair
-my light red hair has darkened and become very gray in a 6 month time frame, as well as thinned considerably. I was losing handfuls but again, that seems to have slowed down. I have to color it every few days and then it fades very quickly or goes gray.

9. Frequent Headaches.
-had massive migraines in college (MRI showed brain atrophy and enlarged ventricles...doctors decided I was having absent seizures and gave me multiple medications that didn't really help...I finally took myself off them in 2003)...have never had a contrast MRI because I'm allergic to shellfish and iodine.

10. Cold/Tingling Limbs
-I am often cold and have numbness/tingling in my hands and legs. I have a family history of hypothyroidism but my numbers are always borderline normal.

11. Swelling/Water Retention
-my legs/ankles often swell, and I always seem to be retaining water despite drinking 80-90oz a day

12. Vitamin D deficiency
-levels below 7 back in January 2008. Received 30,000 IU injection per week for 12 weeks. After that, level went up to 17 Seemed to be normal (31.5) after gallbladder removal. Back down to low 20s at last test in July 2008 despite taking 2,000 IU orally on a daily basis.

13. Heel Spurs
-started in August 2008 and come and go (here now!)...I have a fairly sedentary job so I'm not on my feet a ton during the day.

14. Sweating
-I almost never sweat, even with exercise, but in the last few months (June 2008-present) I've been sweating heavily with little exertion...I've even switched to using my husband's more "manly" deodorant!

Email Mac

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Saturday, October 4, 2008

Rebecca (NixieNox), undiagnosed bio

I am the 32 y.o mom of an adorable 2 y.o. boy, who is the love of my life. I am very blessed in the fact that we share the same birthday. He was born on my 30th birthday. I have been married to my husband Tony for 5 years now.

I have been suffering from early onset arthritis and fibromyalgia for some years now. i have had multiple surgeries on my knees. I just started my journey to hopefully a cushings diagnosis after getting really sick and developing swelling all around my neck, face, and a hump on my shoulders.

My blood pressure shot up. And I keep bulking up around my middle. I look forward to meeting others!

Because of my problems, I already know the challenges of trying to be a mother and live a normal life while compromised, and all the wonderful guilt that goes with it.

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Kim (ajc3boys), undiagnosed bio

My name is Kim. I am 39 years old.

In April 2008 I began gaining weight, had an enormous amout of stretch marks on my upper arms and abdomen. I had problems with my stomach, nausea and vomiting, headaches, unrelenting fatigue etc. I went to my yearly exam with my ob/gyn and showed him my arms.

He immediately asked if I had heard of Cushing's. I had not. He looked me over and said I had a "buffalo hump" round face and He said he was almost sure I had cushings. He ran tests, but none came back high enough to say for sure it was Cushings.

I am now seening and Endocronologist and he told me the first time he walked in the room he said to himself "She has cushings." Now after rounds of tests with nothing showing a definite diagnosis, he thinks I am cycling and wants me to try to track my symptoms and I am really trying.

It is so frustrating for the doctors to say we are pretty sure this is what you have but none of the tests showing anything. I am waiting on some additional blood tests at the moment and am hoping for the best. I seeems a little sad to be hoping that you have a disease, but I just want a name to why I can hardly work, function as a wife and mother, and just do the things I enjoy.

I hope from this site that I will learn more about cushing's and realize I am not alone in my trials.

Email Kim

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Monica (Lollypop), undiagnosed bio

HI, I am a 51 year old women who is now seeking an endrocrynologist to confirm or deny that I have Cushing's.

Since the age of 28 I have had a bufflao hump and have always had bruising and difficulty maintaining a healthy weight. With the help of intense excercise and starvations diets I was able to keep my weight between 130 and 150 pounds. I am 5 ' 7" tall.

I have also suffered from extreme cyclical depression and fatigue. After my second child at the age of 35, my weight continued to balloon until my present weight of 238 pounds with the majority of the excess weight in my upper body. Now, during this time I continued to diet and excersize but my weight just continued to climb. I and family members always found it interesting that I gained weight like this.

In addition , not one of my doctors(family doctor, obgyn,, dermatoligist) ever mentioned these obvious symptoms, including my own brother who is an Internist. I even asked him once what the "Buffalo Hump" was and he just said "Fat". I felt embarrased and did not pursue it further thinking that I just had a "weird body". 5 years ago I experienced a horrific panic attack and was admitted to the ER. I thought I was having a heart attack. A millions tests were run and everything came back negative. After my second panic attack and trip to the ER, I was giving anti anxiety pills, which I continue to take to this day. 4 years ago, I was diagnosed with hypertension and this past month diabetes. I am on medications for these illnesses as well.

I fortunately changed doctors a month ago, and this wonderful Physican advised me to go to an Endo because she believes I might have Cushing's.

After reading all your stories and obsessively reading any and all material I am able to get my hands on, I am confused as to weather I really have Cushing's . I do not have excess facial hair, I do not have purple strech marks and other than my cyclical low energy levels and facial flushing, I feel ok.

Can anyone relate to my story? I would apprecial any and all feed back. Also, a referral for an Endo in Southern California would be greatly appreciated. Also, If it is concluded that I do have Cushings, will the physical symptoms go away after I am cured? I feel so fortunate and greatful to have found this site. Thank You!


Hi, first of all I want to thank MaryO for creating this wonderful and much needed website. I have been reading it for days.............. and have an appointment next week with
Dr. Ted Friedman to find out if I do have Cushings. All of your personal stories, information and referrals have been a Godsend.

This is my story and if any of you can give me insight or advise I would be most appreciative.

1975- present- Cyclical fatigue and easily bruised.

1994- I developed a "Buffalo Hump". I weighed 140 pounds( I am 5' 7") but have struggled all my life with weight and was only able to maintain a low weight starving myself and intense arobice exercise.

2000- Weight up to 200 pounds without changing eating habits and continuing to excersize. The onset of weight was not sudden but continual.

2000- CBC showed I had high cholesterol

2003- First panic attack. Doctor put me on 20mg of Lexapro. I continue this dosage to date. I also start perspiring heavily in the face and am always hote. This continues to date.

2003- High Blood pressure diagnosed. I was put on 20mg of Lotensin. I continue this dosage
2003- to August of 2008- gained 53 additional pounds. Again, no change in diet and continuing to excersie. Most of the excess weight is in my stomach, back, face and arms. I am shaped like a lollypop.

September 2008- Lost 10 pounds without trying.
Septmeber 2008- Attack of Diverticulitis. Went to new Doctor who diagnosed me, ran blood tests after which I was diagnosed with type 2 Diabetes. Was put on 500 MG twice a day of Metformin. Lost an addition 17 pounds due to barely eating because of the diverticulistis.
So now I weight 227 pounds, am taking daily: 20 mg of Lotensin, 20 mg of Lexapro, 1000 mg of Metformin. I have a Buffalo hump, am shaped like a lollypop, bruise easily, cloudy memory, facial perspiration, cyclical fatigue, am always warm, even on the coolest of days.

Well there you have it, Can anyone relate to my symptoms? I was fortunate enought to accidentally go to a new doctor for my diverticulites and after looking at my history and buffalo hump, suggest that I might have Cushing's and to go to and Endo. I will always be grateful to her. Why did'nt one of the dozen doctors that I have seen all these past years not even mention the truly obvious, My buffalo hump? Amazing..........

Thank you in advance to any insight!

God Bless,


Email Monica

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Friday, October 3, 2008

Rebecca, undiagnosed bio

I am 24 years old.

Last year my life changed. In less than 3 months I gained 39 kg or 85.8 pounds in less than 4 months. I am constantly tired no matter how much I sleep. I suffer on/off insomnia, my skin is fragile and thin, my hair on my head is falling out in droves and is not growing fast at all. I suffer severe migranes, have horrible stretch marks across my body, have lost my shape, have a swollen (moonface?) face, have extra hair growth on the body and I am bruising easily.

I have little concentration, am very irratible and have noticed personality changes. I get heatrashes in the middle of winter across my face, yet my hands will be frozen. My bones ache and I have lost so much muscle strength. I am so depressed, have a low libido, have no period and lately I am having problems with my eyes.

My normal doctor knows there is something wrong however none of the endo's I have seen do anything. One told me it was all from depression. Another told me I stuff my face too much. This especially hurt as I was living on 2400 Kilojoules a day, barely surviving, exercising like crazy and still putting on a kilo a week.

My blood tests show my cortisol is high, my platlet level is getting higher and higher, I am constantly showing signs of infections/inflammation, I have hypothyroidism.

In Australia, the only way to diagnose cushings is with a 24hr urine test, yet mine was only "moderately" high. It is affecting everything in my life and I just want to know what it is. One of the hardest parts is the not knowing.

Everytime I eat, people stare and you can tell they think I'm gross. People make nasty comments about my weight and say I should exercise. I don't do much anymore because I just can't manage it, but even when I did, nothing positive would happen. Its affecting my friendships and relationships. I feel like such a winge, but I can't help how hopeless it feels.

I am so grateful for this, for being able to vent with others that actually understand what its like.

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Angel, undiagnosed bio

Hello! My name is Angel and I live in Largo, FL.

Back in February I noticed that I had a hump on my neck forming. I went to 3 different doctors and they all told me different things. At first it was a tumor and then it was a cyst. Finally I went to a surgeon who told me that it was just a big fat hump forming but had no idea what caused it.

A few months after that I noticed that it was getting bigger and at the same time I started feeling extremely tired and weak all of the time. For only being 28 yrs old I knew something was wrong. A few weeks ago I was forced to go on medical leave because I am not able to stay awake. Other than being tired all of the time, being very weak, and my hump forming, I noticed my eye brows were growing in quicker and thicker, I was breaking out randomly near my hair line, I have had a hard time holding down food, I have gained almost 30 lbs in the last 2 months and it is all in my mid section, my periods have become more irregular, and I have completely last my sex drive.

Almost 15 years ago I was diagnosed with type 1 diabetes so I have grown to know and pay close attention to my body over the years so I knew something was wrong but I didn't know what. I went to my primary care doctor and he ran a bunch of test and then told me that he had no idea what was wrong with me but that I needed to lose weight.

I went to my Endocrynologist and he said it is all from my diabetes because I am gaining way to much weight. I then went to the GI doctor to find out why I was vomitting all of the time and he discovered that I have acid reflux. I then decided to turn to the web. I have spent countless hours on the internet trying to find out what is wrong with me.

Last week I finally found this website and after reading about Cushing's disease I would be willing to be money that this is what I have. I made an appointment with an Internal Medicine DR right away and got in the same day. I brought him an entire folder of blood work and test that I have had done in the last few months. After we talked for a while he told me that he thinks I have PCOS. He also thought some of my sympoms were caused by my diabetes. I brought printouts with me regarding Cushing's and he told me that I don't have it because it is way too rare but to make me feel comfortable he referred me to another Endocrynologist.

I went online to search for top notch doctors who specialize in Cushing's and I came across one that was only 40 miles away on the other side of Tampa. I called him and luckilly got in 2 days later. I went yesterday to see this new DR and rather than mentioning Cushing's to start, I spent over an hour going over my symptoms. After we talked and she examined me she told me that she was going to run some tests on me and have me collect a 24 hour urine on me. She then told me that she thinks I have something wrong with my adrenal or pituitary glands. After that, I asked her if she was referring to Cushing's Disease and she said yes. I am so grateful that I found this new doctor and she is testing me for this because I am almost certain this is what I have. I just want to find out so I can start to feel better and regain my energy.

Thanks to everyone who has shared their stories. Feel free to contact me at anytime if you would like to chat about your experiencese.

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