Hi everyone,

I know most of the postings on this board are for guidance with children, seems like even with my doctors, all I hear about when they talk about their experiences with CAH has to do with children.  Well we do grow up, and like myself, find ourselves frustrated with how most endos treat our condition in adulthood.

I have a question for any other adult out there with SWCAH.  I’m 29 years old, i’m currently taking 0.625mg of decadron daily (1 1/4 tablet) and 0.1mg of florinef (hasn’t changed since I was 11yrs old).  I’ve had a horrible problem with my weight since being put on decadron (5’ 265lbs) , i’ve never ever been put on hydrocortisone.  Except for the odd time of surgery, etc... My lastest lab results came backlast week, all is normal, 17-OH, testosterone, sodium, potassium, ACTH, DHEA-S, and renin.  Excepts my TSH was high, but my T4 was normal.  Immediately they assumed i’ve got an autoimmune disease (without testing my thyroid antibodies, etc...) and put me on natural thyroid hormones.  I refuse to believe that now suddenly i have hypothyroidism, when i’ve had my TSH tested about 12 times through routine bloodwork from jun 05 to nov 05, and it was all normal then!

I’m only 29, never been pregnant, don’t have idodine defficiency, and don’t have pituitary problems.  Every time i take the Armour Thyroid pill, I get palpitations, nervousness, blood sugar drops, sweats, and crave salt like crazy! He took me off of it, refused to treat me any further and send me to an endo.  There’s only 1 endo here, and he’s horrible, doesn’t know anything except diabetes stuff. Never wants to test renin, etc...

I found a naturoptah doctor online, told her my current situation, and she’s convinced my estrogen and cortisol levels may have changed, and is causing the slow thyroid.  She also told me the many adult CAH patients she treats are on hydrocortisone as it is the closest to cortisol, and helps manage weight better.

Have any of you ever had problems with your thyroid now that you’re approaching your 30’s? if so, was it due to dosage adjustment needs? Do you recommend i switch to hydrocortisone from decadron? How much hydrocortisone daily is a baseline for adults?

thank you for listening .... any help is much appreciated

caroline