Hello Eva,
As for the timing of the tests, I have never been told that you have to take them at certain points during your menstrual cycle. I have been to various endos since my diagnosis and was not made aware of this by anyone. Maybe someone else on this board has a different opionion though.
But, yes usually a 17-OH reading above 1000 indicates LOCAH and so does a high dhea-s reading. My dhea was 413 and my 17-OH was over 5000 when I was diagnosed. But to be sure of the proper diagnosis endos will also perform a dex suppresion test, free urinary cortisol test and ACTH stimulation test to rule out other diseases, like cushings and adrenal tumors. Since you said you were diagnosed many years ago, I am assuming you had all these done already. The endo would be the person to discuss this with not your gynecologist. They ususally just have basic knowledge of CAH but since this is not their specialty they cannot offer much information on diadnosis methods or treatment. Who performed your tests -- a gyno or an endo. It should have been an endo. If you think the first endo you saw years ago was incorrect in his diagnosis then keep searching until you find one you are comfortable with.
Your symptoms (acne/seborrhea, hair loss, fatigue) are very common in we who suffer with LOCAH. I can empathize and sympathize with you -- very troubling indeed at times.
Go to this website to see about testing and lots of other information on LOCAH. http://www.marianew.com/ -- Personally, I have seen this physician after being completely disatisfied with my previous endo. She was very expensive even with insurance, but I have a much more thorough work-up and explanation. The tests I mentioned above are just basic tests, there are others that will be needed for a complete diagnosis.
Hope this helped a bit. Let us know how things worked out.
