And It's About Time There Was Some Support For Cushing's!
Hi...my name is Kim, and my Cushings started years ago. I am now 43 years old, but probably had cyclical Cushings in my early 20's. I was always tall and petite, and never really had a weight problem until after my three kids. By the time I was 36, (1997) there started to be major symptoms (you all know what they are). I had them all!
I went on to have a total hysterectomy because the Drs. thought it was all related to "female problems" and I was finished having children. That surgery sent me into full time, overdrive hypercortisolism, and up to 200lbs. I was so sick that I basically had a nervous breakdown. Thank goodness, my friend who is a nurse saw me and thought the pharmacy had made a mistake and given me steroids instead of estrogen. Her brother in law was a female endo, so she called him and he called my husband (my husband is a physician, but when you live with someone, you miss so many of the physical symptoms. You just get used to someone's looks. He's also an ENT, so was not up on Cushings.) He told my husband what tests to run on me. They were all elevated.
To make a long story short, I was excepted out at NIH for testing and surgery. My MRI never did show a tumor, so they did the IPSS out at NIH. Was still inconclusive. When Dr. Oldfield got into my head he found a small gray spot on the pituitary stalk. Rare place...he had only seen eight tumors where mine was located. There was also dura invasion. So...that gave me a 20% chance of recurrence.
I did great for 5 years. Lost weight, really got my self back. I felt good too. Now....six and a half years later, it's back. We believe it's intermittent at this time, but I am awaiting word from Dr. Nieman at NIH to see what to do. I'm hoping to get back out there because I had such a wonderful experience there the first time. My care was awesome, and I trust them. I'm really scared as to what the options will be. I'm really afraid of going back into my head again. Then....the thought of adrenalectomy is scary too. I have read many bios here of people that have and their adrenals out, and they seem to be okay with it. I'm sure it is a different way of life.
Please....I would love to hear from those with a bilateral adrenalectomy. I hope to hear from Dr. Nieman (NIH) soon. I sure don't want this to drag on to the point that I get full blown Cushings again. Right now the symptoms are 30lbs weight gain, round face, hump is back, horrible mood swings, sleep disturbances, and confusion and weak, weak legs and arms. But....right now, they are livable. But....I know how bad they can get, and I don't want to go back there.
I will update as I hear what's next. This really is a great site. It's nice to know there are others out there that have been through exactly what you have been through. No one else can truly understand.
Thanks for listening.