Cushing's Syndrome Support Group

I'm so sorry to hear that. I got diagnosed in December of 2007. They found a small tumor on my patuitary gland. I had brain surgery October 20th of 2008. They went up through my nose to take it out. I was in the hospital for four days. I will have to be on steroids for about another year or so. Somedays are ok then other days I feel like I have the worse flu ever possible. I don't remember what my level was before surgery but I do know it was high. Now my level is 4.7. If I can help in anyway please feel free to let me know and you can ask me anything.

I was diagnosed in May 2009 and had surgery to remove a tumor July 8. My 24 hour cortisol was over 300 (normal below 90). My plasma cortisol was over 20 (normal ~ 5). After the surgery with no supplementation, my plasma cortisol was 1. I am taking hydrocortisone now as a supplement until my pituitary wakes up and starts working again.

I can't imagine what the steroids are supposed to do for a treatment. Cortisol is a steroid and the problem is that you have too much. The main causes of Cushing's are either a pituitary tumor or long term steroid use. If you haven't been taking steroids, then an MRI should be done to determine if you have a pituitary tumor. If so, then surgery is the typical treatment and isn't really that bad.

Since steroid use can cause Cushing's and having too high of steroids is what causes the problems, I really don't know why they are giving you steroids. Could it be for a test instead of a treatment? It makes me wonder if your doctor understands Cushing's. My PCP didn't and admitted it freely. He has never had a patient with it, which explains why it took 2+ years and another doctor to catch it.

This was posted in Feb of 09, but just hit the web site. Are you still out there, and if so, how are you doing?