Update from NYC

Well there is some good news and some bad news from my trip before Christmas to the specialist in NYC. I was accepted and demanded to be this doctor's patient but the reason is the bad part...I have a rare form of Cushing's which requires a lot of testing and treatment. Treatment includes surgery and a lifetime of after care with her as my supervising endo. Good thing NYC is close by! She only takes three patients a week and only the hardest cases which can't be helped by a regular endo.

One look at my MRI and she saw a problem immediately and is having the surgeon look at it this week. Also, I likely have chronic hyponatremia (sodium problems) due to the previous surgery and this is what I have been confusing as an adrenal insufficiency. She said my cortisol was high adn that my ACTH (caused by the steroids) and that I should immediately come off the steroids. Coming off the steroids will likely drive my cortisol levels higher since my ACTH will then be able to go to it's "natural" Cushing's state.

She is very concerned about my physical state and increasing stomach size and infections on my skin as well as rising blood pressure and sugar levels despite treatment. That is also an indication of Cushing's. She is not worried about my mental state or any signs of depression as I seem to be coping quite well and finding outlets such as this blog for helping others as well as myself. She thought it was quite healthy to be able to talk about Cushing's and the battles it presents to patients. Many patients don't find an outlet and actually create depression issues because of it...there are biochemical issues in Cushing's that cause depression. But that was one sign of Cushing's I didn't have and probably because I seem to be a fighter.

So I have to add chronic hyponatremia to my charm bracelet and remove adrenal insufficiency since I am over producing on my own. I’m off to do my tests this week and hear about them in the next week…talk to you all again soon…and remember 2006 is the year I will get better so that 2007 will be HEALTHY!!!