Cushing's Info

I was 20 yrs old - now 33 when my hair started to fall out. I would run my fingers through and strands would just come out with no effort on my part. My periods stopped for 6 months then very irregular after that.

I was in college with no insurance so I went to the student health center. The MD there ran bloodwork & said I had very high DHEAS *531 the range was 45-380. He said I had adrenal hyperplasia. I of course had no clue what was happening. I just wanted my hair back. He put me on dexamethasone to lower my levels & they did. Lowest reading was *7 then tapered me off.

During those 2 years of seeing him, He referred me to a dermatologist because he said instead of me having hair on my face I continued to lose my scalp hair. The dermatologist injected my scalp with a one time cortisone shot to stimulate growth. Of course that did nothing. Finally I was put on birth control pills & sent on my merry way.

During those years, I had gained about 30 lbs, had acne, oily skin, puffy round face, hives, depressed, tired in the mornings & during the day and noticably  fat around my mid area. I had a lot of neck pain with muscle spasms. Sometimes I couldn't turn my head it was so bad. I left college & began my 13 yr odyssey of visiting doctor after doctor.

I saw endocrinologists, dermatologists, gen. pract., obgyn, I got many diagnosis from adrenal hyperplasia, PCOS, alopecia. One MD told me "Do you like eggs? Eat a lot of eggs, try omelets, boiled, scrambled..." that was my prescribed treatment - to eat eggs. I decided hey, I'm just overweight so I have to get my self thin & this will all go away. Through much hard work I lost 50 lbs. But I was prety much starving myself. I didn't know the first thing about dieting. I would eat grapes & a diet soda. My hair continued to thin out all over but more noticably on my front & top. I started to disguise with hair styles my hair is curly & was long so that helped make it look more volumous.

Met my hubby, married weighing 165 lbs. & 6 months later weighed 220 lbs without any eating or activity changes. I look at my pictures and see the drastic change. Now I had very little hair(which I was only wearing in a pony high on my head), severe puffy face/cheeks/neck, acne, oily but dry flaky skin - it's weird, eye twiching, muscle cramps in feet, severe bloated ankles & feet, buffalo hump, very fat abdomen with stretch marks, very red face - hot to the touch, always sick with the flu lasting 2 weeks or more every 6 months. Weird rashes on my skin. More recently I have the severe itchiness everywhere I mean everywhere. So itchy sometimes I can't stand it. Some of these symptoms come and go but have been a constant during the past 13 years.

I consulted an endo who diagnosed PCOS but I felt there had to be something else because the Metformin which I had been taking for 3 years did nothing for me. I kept getting worse symptoms. Now I'm at 254 lbs trying to exercise but my ankles hurt so bad feels like they want to break off or I'm just tired. Then my brain farts started. I could be talking & stop mid sentence to say " what was I just saying..where was I going with this?" & not even know how to finish my conversation because I just "forgot".

My husband wanted babies from day one of our marriage so I stopped birth control pills & consulted a fertility doc put me on provera for my periods & clomid to ovulate. 2 pregnancies & 2 miscarriages - devastating. My symptoms & now the pregnancy losses are putting much strain on my relationship. 2 months ago, my hair, whats left of it, started severly shedding again. I wasn't seeing any endo anymore.

Consulted another Endo who examined me & uttered " looks like something called cushings" Of course I immediatly went online & was jaw droppingly shocked. Those symptoms, that's me! I thought all these years & this is it, this is going to be my correct diagnosis. I went from highs & lows crying & joy at the same time. He ordered a 24 hr UFC, thyroid tests, testosterone, dheas. All tests came back within range except elevated testosterone, elevated cholesterol & insufficient vitamin D. I was numb, just numb. How could this be? He said my UFC was within normal to elevated range but he thinks I have PCOS. I left feeling hopeless, shocked & defeated.

Discovered Dr. Freidman through this website & am trying to raise funds so that I can see him. I am now convinced I have something relating to cushings. My husband says I should just accept I have PCOS and get on with my life but I just can't accept PCOS. I always vowed to not wear a wig because I guess that would mean I accepted the changes on my body but now I am practicly without hair on my scalp. I have read many bios of women stating they had hair loss but none mention that after diagnosis/treatment their hair regrew. Everywhere I go, I search the crowds looking at heads bodies looking for someone who looks like me. I feel alone because I never see anyone with symptoms like me.

I feel if anyone can help me it will be Dr. Freidman. I hope you will keep me in your prayers.

UPDATE January 14, 2010:

I saw Dr. Freidman 01/2010 and he said I look like a person who has Cushings, ordered a dynamic MRI & gave me a bunch of lab orders for 24/10 hour UFC's. I also am supposed to test my saliva. He said he believes I may have cyclical Cushings! Had my MRI done last thursday & now I have to read my body signals for my "high" and then test....so stressfull.

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