Carol,
Thank you sooo much for your reply! Yes, I do have other symptoms. Hirsuitism, acne everywhere that is not alleviated by anything, hyperpigmentation of my skin, pubic hair is thinning, VERY bad salt cravings (my serum sodium is on the lowest end of normal despite the amount of salt I have been eating. Also, I have episodes of near fainting, and sometimes when ill I do faint. I also drink a lot of water and dehydrate easily, get sick easily and recover slowly, can't handle stress, extreme fatigue, etc... (addison's and all other forms of adrenal issues have been ruled out)
My first cousin also has SWCAH but is not aware of what deficiency she has.
That is a very good suggestion about the pediatric endos. I have been to more endos and other specialists than I can count and everyone has different information and criteria. Everything I could pull up on 11 deoxycortisol def. said 3x upper limit of normal was diagnostic criteria. Finding a doctor who agrees is where the problem lies I guess. Just wanted to make sure all of the criteria I found was correct.
Thank you for your suggestion:)