Thanks for your response Sandra. I actually have had genetic mapping done at Dr. Maria New’s clinic in NY. I definately have 21 hydroxylase defiency but with the combination of 6 mutations that I have, I could have either classic or non-calssic form of this deficiency. I wasn’t treated until age 25, although I had all the classic symptoms growing up, but no docs picked up on it. Now I’ve been homebound and very ill for the last 2 years, and have been to 17 docs. No one has seen the combination of CAH with possible Pituitary Cushings, so I continue my search. I also don’t know if the tumor in my pituitary might have developed from the untreated CAH for so many years. At age 25 when I was first diagnosed, .25mg of dex lowered all of my androgen and 17-OH levels to normal. Now, I’m on 1mg dex and it’s not controlling my levels. It took 2 days of 2mg dex, followed by 2 days of 8mg dex (on low to hi dose dex suppression test) to bring my levels of 17OH to within normal range from over 16,ooo. I’m just wondering if my adrenals were removed if this would help not only the CAH, but the pituitary tumor as well.

Have you ever heard of an adrenalectomy in CAH patients that can not get optimal control of their hormone levels without having to continually increase theire steroid doses? Any feedback would be really appreciated.