Hello all. I'm recently diagnosed with CAH and I'm 28. My endo did some tests, but not what I expected her to do. My baselines were all normal except for elevated testosterone (total and free). She did the ACTH stimulation test, but didn't check the cortisol levels after but all this other stuff instead. After the medication, my results at 30 and 60 minutes were elevated for androstenedione, DHEA (but not DHEA-S.. it was normal), pregnenolone, and 17-OH-pregnenolone. 17-OH-progesterone was elevated but fell in the "heterozygotes 3-10" range, rather than the "CAH > 15" range.

Does this mean anything to anyone, because it confuses me? Anyway, anytime I see people write about checking 17OHP (don't know which p that is cuz it's always abbreviated) it seems like they're talking about testing for SWCAH. Someone mentioned that it might be testing for 3 Beta deficiency CAH. What is that? Is it the SW type?

That can't be it, right, cuz I would have been very sick as a kid? Can anyone help, I'm totally confused and my endo is terribly unresponsive and noneducational. Besides, from what it seems of how few medical professionals are knowledgeable of CAH, I figure parents of CAH kids are probably the most experienced experts.

Any info you can teach me would be much appreciated until I can get in to a new endo. Thanks in advance.