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Actually, she is being treated, but she is not doing well. To try to make a long story short: she also has been suffering from chronic hives for 4 yrs. In doing lots of testing to try to find the cause of that, we found she had high testosterone. Obgyn put her on BCP for probable PCOS, despite normal ultrasound and no other indication of PCOS. Her testosterone level came down some, but not into normal range. Then they tested for 17 OHP and it was high. After the "normal" ACTH test, which also showed a minimal cortisol response, the endo declined to treat her, but I convinced her allergist to give prednisone a try a year ago, based mainly on her orthostatic hypotension. He started her at 5 mg, weaning her down to 2. He wants her on the lowest dose possible. She felt better at first, but now is feeling no better than before. I'm wondering if the dose is too low, but on the flipside, she's had 4 sinus infections in the yr she's been on pred. So the dr wanted to wean her off, but her hives got worse. So now we are kind of stuck. She's exhausted all the time and still has symptoms of androgen excess. Sorry to make this so long!
Anyway, I'm feeling like we really need a definitive diagnosis, so I want to pursue genetic testing. Do you know what made the insurance co. agree to pay? Also, I understand that genetic testing isn't 100% accurate, either. I'd be interested in what Dr. New says about that. Also, there was an odd thing about my daughter's stim test. I know I read something by Dr. New that said that 17 OHP peaks about 45 mins after stimulation, which is why they do the second blood draw at 60 mins (but I can't find where I read that). Anyway, the endo, who didn't seem to know anything about CAH, did the test for 120 mins, doing draws every 30 mins. Well, my daughter's 17OHP, although still in the carrier range, was still going up at 120 mins. So we don't even know what the peak was, and I have no idea why she had a slow response like that. Her cortisol did the same thing. If there's some reason why she had a slow response and her 17 OHP really did eventually go over 1000, then I wonder if that could be happening to other people, like your daughter, whose 17 OHP goes up, but not into the LOCAH range.
