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I waited almost three months to see Dr. New and I saw her last week and I have to say the appointment was devestating. She spent no more then two mintues with me and addressed basicly nothing with me. Because my 17- OHP is not elevated they told me I likley to do have CAH. However, I do have all the symptoms and maybe I am a carrier. I have had three ACTH tests with results being 103, 80 and 93 with the normal range being up to 27. My endo has me on dex and fludrocortisone because my stim test came back showing no aldostrone at all and further testing came back abnormal as well. Prior to starting the meds I was unable to get out of bed. exhausted and dizzy and nausious all the time and ended up on medical leave from work. I am not nearly as tired or dizzy now but have tons of muscle spasms and low energy and gaining more weight I can not afford to gain. I am just completly devestated by this appontment. They did take 11 vials of blood but apparently the DNA test is only for the one form of CAH which I likey do not have. I am honestly scared their is no help for me. They said if the tests do not show CAH then the steroids should be stopped. I am so confused.
