Hi folks, I was just diagnosed with congenital adrenal hyperplasia spesifically 11-Beta hydoxylase defisency. I am a thirtysix year old female. I began having symptoms of fatigue, cardiac arythmias, fainting, flushing, abnormal amounts of hair growth on my face and body, potassium waisting, dehydration, and ovarian cysts -starting about five years ago and it progresively got worse until I felt like I was dying and nearly did die a few times from potassium loss and dehydration. Four years ago an endocrinologist thought then that I had 11- beta hydroxylase deficency so he started me on Potassium, florineff, and decadron. My symptoms did not change at all and he retired and my internist took me off the steroids because they were not helping me. I was however kept on 120mEq's of potassium chloride per day because that was the only way to keep my potassium in the normal range. Over the next few years I progresively got sicker, saw more doctors and endocrinologists who all basically said, "why do you think I can help you if the last endocrinologists couldn't help you". Esentially they were over worked, and couldn't be bothered even though I was dying. So, now I have a new endocrinologist who actually seems interested in medicine (what a concept!) and he re-ran the cortrosin stimulation tests and said I do indeed have 11- beta hydroylase deficency. I have never had high blood pressue and I often faint from low blood pressue even though I suffer from hypokalemia. This new endocrinologist seems to think it is because I have a defect that is slightly different from most 11-Beta hydroxylase deficency and he showed me an entry in one of his endocrin texts that discuss this kind of "Non Classical" 11 Beta hydroxylase deficency where you can waist potassium and have low blood pressure. This new endocrinologist started me on decadron last month and has me continuing to take the same amount of potassium and I am not getting any better and this seems to be a repeat of what I went through four years ago. So this is why I am writing to you all. Is there any one out ther in computer land with adult onset 11 beta hydroylase dficiency that I can corespond with because I want to know if any of you have had similar experiences and if any of you have also not responded to the steroids and if so what have you all done to treat your symptoms. There seems to be a lot more written about other types of adrenal hyperplasia and aparently 11 beta hydroxylace deficency is extreamly uncommen so I am not too sure that I am always getting accurate information. According to the stuff I have read I should be feeling well taking Decadron and since I am not I question if most of this literature is being written by doctors who have actually ever treated some one with 11 beta hydroxylase deficency as oposed to other more common forms of adrenal hyperplasia. I would really apreciate any feedback and again I would really like to corespond with other people who have 11-Beta hydroxylase deficency. I thank you all for taking the time to read this long note and I wish you all well! Take Care - Lucha