this is wonderful! I’ve begged for info like this in the real world from Endos and endocrine nurses ...nothing. I’ve always had a hunce about all this but never info like this to connect the dots. I was always the genital exam girl in service to the residents @ that teaching hospital and endos in my adult life either patronize me or blow me off completely. I have a good endo (the best in the area) but I don’t look to him for questions any more- I do try but he just mubles, smiles or laughs.

When I was 11, I stopped taking the pred ...didn’t want to have anything to do with CAH or their exams. No med ...then I didn’t have CAH in my 11 year old mind. I got sick during that time period and the next doctor appoint- they were so glad they could study a pathway that was without med - How I was feeling or why I didn’t take the med didn’t matter to them and NOT one of them told me what would happen by not taking the pred But it was get up on the table and lets pull the gown up and take a peek.  I guessed about the adrenal crisis also by the time I was 16 after not taking the pred at all during during a time period when I had the flu- it was a blizzard and ran out of the pred after I put two and two together that this vomiting was different my dad went forthe pred- nobody ever told us anything about adrenal crisis  - a resident fellow (those that are goingto practice in the field)  off handly told me latter that Oh yeah  by the way  don’t stop taking the pred and if you are sick take more. Yeah lady tell me that before.

 

 When I wanted info about my thyroid condition- the endo nurse told me ...ohhh we don’t want to upset you and then whenI called back to verify info that I found on the Endocrine manager. I was told "You’ve become quite the little medical person haven’t you." I just said "ok" and hung up.

I’m grateful for all of you and this message board -thank you for answers.