And It's About Time There Was Some Support For Cushing's!
Hello! My name is Kelsey T. I am 18 years old and was diagnosed with Cushing’s about 2 years ago.
My story is much like so many of yours: a dozen, or so, local doctors that told me nothing was wrong, that I was just overeating, but I knew in my heart something was definitely very wrong. I had never even heard the words Cushing's disease and firmly believe that I would still be looking for someone to listen to me if not for this website.
Without all of your bios, and my moms relentless researching, I could still be searching for a diagnosis. After reading and researching, I traveled to a specialist in L.A. (I am from Denver). He thought I was cyclical, but probably had Cushing's. He sent me home with a variety of tests. After a few months of testing and a MRI showing something on the left side of my pituitary, I had transphenoidal surgery in L.A. (Oct. '06). I definitely “crashed” after surgery, and for a couple weeks we were hopeful there was a cure. I lost 10 pounds in the first 2 weeks and felt better than I had in a long time.
But then symptoms slowly began to return (weight gain, irregular periods, bruising, round face). Another MRI indicated a growth on the right side of my pituitary, so I had another surgery with the same surgeon in Feb '07. We knew immediately that it was not successful. For 6 months I tried meds (ketoconazole and metyropone) with limited results. The meds seemed to prevent my symptoms from worsening, but they did not really improve much.
In August 07 we spent a week at NIH, but all tests came back normal. I was clearly still cyclical. In January I visited another specialist in Seattle who had been highly praised by other cushies. I was high on several tests while in Seattle, but never on UFC’s.
I have been continuing my testing at home, and I finally got a high UFC result a couple weeks ago. I don't know how many more I will need before I can move onto the next step. Unfortunately, with 2 failed pituitary surgeries, my options are all a little scary.
One option would be a 3rd pit surgery. I only have about 1/3 of my pituitary remaining, and remarkably do not need any replacement hormones. It is pretty certain that another surgery would severely impact me, possibly making me infertile with a completely non-functioning pituitary gland. This would be true of radiation, as well, and that can take a very long time to work. Although the thought of being unable to have kids is upsetting, at this point I am willing to risk infertility to live a relatively normal life.
My last option is a BLA. I am all for this, but my mom seems a little more reluctant as I’m sure you moms out there can imagine. She would hate for me to have perfectly good adrenal glands removed, although I think after talking to many of you she’s starting to feel more confident about this course of action. The doctor seems to be leaning toward a BLA as well and I very much value his expertise. We have a phone consult with him soon and my mom and I are both anxious to hear his opinion on the timeline and the next step.
Unbelievably, this sounds like one of the easier scenarios, though it is far from over. This is an awful disease and I am amazed by the strength and compassion of those who are suffering from it. You have all helped me more than you can imagine and I am eternally grateful! If I can be of help to anyone, feel free to contact me!
Kelsey
