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I think I may have Cushing's disease!

I am 20 years old and I think I may have Cushing's disease. In 2005 I suddenly gained 100lbs in one year, I thought this was because I stopped riding my bike. I also noticed that I had this ugly distinct bulge on the back of my neck, I have my hair down all the time to hide it because its embarrassing to me I've always thought it was from slouching and carrying a heave backpack at school. My periods have been screwed up for year... the doctors suspected it was PCOD, but recent blood tests say my feminine hormones are normal. I literally have to pluck dark whiskers from my chin and lower belly every few days or I will grow a uni-brow - not to mention I seem to be forming a light mustache on the corners of my cheeks!! I am obese, most of it is in my belly which is COVERED in stretch marks that extend about 6" above my belly-button and on my sides they connect with more stretchmarks that are on my breasts. For this I havent worn a normal bathing-suit since I was an adolescent! My heels always seem to be aching, but I assumed this was because of my weight (I used to be 150lb but I am currently 270lb at 5'2"). I get what seem like maigraine headaches once a week so intence I sometimes vomit. Also, I've tried varius anti-dandruff shampoos and even salon-bought products that cost 35$/bottle but my scalp is so dry and flaky no matter what. My vision has even degraded over the past 2-3 years!
As for my psyche... I used to be a straight "A" college honors student but now my grades have dropped to a "C" average. I just cant focus on anything anymore. I'm SO easily distracted, I'm drowsy and sluggish during the day but have insomnia at night even though I'm too exhausted to do any productive work. I feel anxious in public, but depressed at home. I also can't seem to remember anything, and I have alot of "air-headed" things - for example a few days ago I filled my car radiator with motor oil! >_<
   I've already been tested for diabetes, PCOD, and thyroid disease...all results came back normal.  I do not take any glucocorticoids, or any steroid medication. So if it is Cushings, it has to be an endogenous problem.  Please give me your input!
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Avatar universal
I'm sorry to hear that you also had to go through all of this. However it is comforting to finally talk to someone who understands what this feels like and doesn't automatically tell me that my problems are because of my weight. And I know what you mean about the faded stretch marks! A lot of my stretch marks that were once purple and red are now faded, especially those below my belly button that I've had for many years. But if you pull the skin, you can see the texture is definitely that of scar tissue. These are also narrower than many of the pictures I've seen of Cushing's characteristic striae.
About the PCOS, I actually had an ultrasound done when I was 14 years old, in middle school. I guess they couldnt tell, because they never did give me a clear answer. Since then its been "up in the air" as to what was causing my missed periods. The reason I waited so long to get it checked out was because I didnt really think that these were symptoms of a disease. I thought it was just because I was overweight, and there seemed to be some logical explanation to each one of them. The thing that prompted me to go back to the Doctor was swelling in my ankles. No matter what time: morning, evening, fasting, full, low sodium, high sodium - if you press my ankle at any time, the skin will stay dented and not come back up for about 15 minutes.
The Endocrinologist prescribed me the following tests to check my cortisol and also check other things to help rule out other possibilities:
- 24 hour urine free cortisol
- Cortisol, salivary 11pm test
- Insulin
- CMP  
- Free T4
- Insulin like Growth Factor -1
- C-peptide
-Thyroid Peroxidase antibodies
-ACTH, plasma

Unfortunately, the Lab isnt open on weekends but I will get these done ASAP and post the results as soon as I get them.
Helpful - 0
445362 tn?1206965718
This post breaks my heart, not because of you but because it hits home so badly. I am 31 years old, and from the time I was 17-19 years of age I gained 200 lbs. There are many disorders that deal with adrenal function so the above poster is very very correct. I went to an endo. last week and he was like "it is not Cushings" just because he couldn't see the faded stretch marks I had. Anyways, I personally think even a good Kidney doctor who specializes in adrenal problems might be a start. But you should go and have an MRI of your brain to rule out anything there as well that could cause this. My thyroid was fine until two months ago. Oh and by the way, did they check to see if you had insulin resistance. There is some kind of calculation with this and hormonal levels if I remember correctly. Did they do an ultrasound to check if there were cysts on your ovaries all over? Are your cycles really irregular. IF , they just ran the hormone labs, but didn't do any of these things, you should re-look into PCOS as well. That is what caused my weight gain. I have lost 100 lbs on Metformin, but gained 30 in the last two months cuz my thyroid is low now.
Good luck to you
Helpful - 0
Avatar universal
the obvious test would be to check your Cortisol levels.  you mentioned that you thought it would be endogenous...so maybe you've had that bloodwork already.

your symptoms do sound very much like Cushings, so please see a specialist...not just an endocrinologist, but a Cushings Specialist!  the sooner you can be evaluated by someone who has experience with the disease, the sooner you can be diagnosed and treated!
Helpful - 0
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