Hi Sharon!

There is a post on the second page (Maggie:Question for Adults with CAH) that you might want to take into consideration. Maggie posted about her husband that had stopped taking meds and he developed adrenal tumors. Also, in the same posts another lady wrote about not being diagnosed with CAH until much later on in life and she had adrenal tumors also. 

It’s good that you are being monitored by an Endo! Maybe you don’t need as much cortisone as some : ) I’ve been whittling down my dose of cortisone ever since I suspected that I was being over suppressed. When I moved out of my home state, I asked the second Endo that I had down here if I could lower my dose of Prednisone and if the blood tests came not to his liking then I would switch back. He wasn’t up to it at first but I convinced him and we as a team decided to give it a try. The blood test came back and it was fine. I felt wonderful being on less of the Prednisone and therefor less difficult as a patient. A win, win situation. The Endo that I have now switched me to hydrocortisone which isn’t as strong as the pred or as long acting but the hydrocortisone is the best thing for me. I don’t have the anxiety gosh ..that’s really to deep of a word basically it was just the jitters while on the Pred, a feeling like I was flying, climbing the walls. I was diagnosed with Simple Virilizing CAH at birth and from reading all these posts you can really see a spectrum of what happens when you a born with this birth defect.

Good Luck to you !

Aimee