Kendra, I was diagnosed at 19 - had signs all my life - like you - but no one thought to do anything until I STILL hadn’t had a period at 19.  I was diagnosed, put on Dexamethasone - I did a short stint on Prednisone but it made me so depressed - I wanted to kill myself and others - lol.  Dex seems to work the best for me. I haven’t had that problem with Dexamethasone unless my dose is too high (I take .5 right now) I am 47 years old.

As far as the hair goes... it did get better for me - it took a long time though. The hair on my face got better and lighter/thinner. I was looking at chart notes the other night from when I was diagnosed - one of the things the endo wrote was "profuse buttocks hair" - it makes me laugh now - my legs were terrible too- like a hairy man - down the backs of my legs with coarse, long, dark, ugly hair. I had to shave twice a day to have it not be seen. That has REALLY changed for me. I still shave all the way up my legs - but the hair has gotten much lighter and finer. It doesn’t bother me anymore.

And yes - steroids do tend to put some weight on you. About 10 pounds for me... but I’d rather feel good and weigh a little more than feel like crap.

Oh yes, and the endos.... I had some lousy endo’s too... never told me about stress dosing, wearing a medical bracelet, carrying solucortef, etc. Never told me about crises. I had a crisis and the hospital thought it was viral meningitis..... I spent four days in there - if they had treated me for a crisis I would have been home the same day.

Find another doc who knows the score - make sure they have had many CAH patients - or people with Addison’s - so they know a lot about adrenal insufficiency.

I once asked my previous endo about where I could get some literature on CAH - I had been to libraries, etc and had never been able to find anything. He handed me a book to borrow that was written in 1962 - give me a break - this was 1996! The part on CAH took up one page only. Thank God for Magic Foundation and Cathy who works/worked there. She was a Godsend to me... I called her on the phone (I had no internet back then). Cathy asked if I had stress dosed (I had no idea what she was talking about) - after I said I was so tired, stomache felt sick, losing weight, anxious, headache all the time... I was on .25 of dex at that time. Well - lets just say my life miraculously changed that day - what an angel she was to me. I literally didn’t know if I’d make it to see my daughter grow up (I was a single parent and my daughter was about 10 at the time) This was I think in 1998.

Anyway - things will get better... knowledge is power - you can’t go off your meds and not have problems though... I had another crisis when I did that - my body makes NO cortisol now and I can’t live without the steroids.

Feel free to e-mail me if you like. Susancampinggal@yahoo.com