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Gina's Story

My name is Gina and I am from Atlanta, Georgia. I was diagnosed with cyclic Cushing's Disease in August 2008. My MRI shows a 3-4 mm abnormality on my pituitary gland, which will eventually be correlated by IPSS. There was also some indication my left adrenal gland has thickened, indicating possibly strain and/or an adrenal tumor as well. I've had two high UFCs (180 and 99 on a 0-50 scale), three high ACTH tests, a high IGF-1 test, and several high cortisol blood draws. My salivaries so far have all been normal, we're waiting on more results to come back. My treatment or surgery may be delayed depending on whether my husband and I decide to try for a baby first.

I'm a weird Cushie in that I have very little of the physical or classical symptoms. I've always struggled with my weight despite being very active. I've been kickboxing for nine years and became certified to teach it last year. Despite being devoted to a strict diet and exercise program, I've gained almost 40 pounds in two years. The majority of this weight is abdominal. My cheeks are round and red, but I had rosy cheeks as a child, and just thought they would eventually go away. I have a flawless complexion - I rarely get acne at all. I do, however, have high blood pressure, high cholesterol, sleep disturbances, and the migraines. All of these things started to develop right around the time the weight gain started.

Getting diagnosed has been the hardest battle. Even though I've been able to produce high test results, my appareance and lack of the classical symptoms has been a hinderance (although I am thankful I do not have the symptoms). My first endocrinologist dismissed both my high UFCs in May 2008 because my salivaries were normal. He would not write me a referral to visit a specialist, Dr. Ludlam, in Seattle, WA. Thankfully, I found a primary care physician who took me at my word about my concerns over the disease (although I doubt he believed I had it either!). This PCP wrote me the referral that got me the testing and care I needed.

Living without a diagnosis was like being in limbo. I think if I could say anything to others going through the same, it would be to move through that limbo as fast as possible. Don't waste time on doctors who don't take you seriously or who don't pay attention to your concerns. Short cut it to a specialist as soon as possible. I wasted three months on an endocrinologist who was the "best" in my area. I got a diagnosis within a week with a specialist. Don't give up and don't doubt yourself. You may not have an M.D., but its your body and you know it better than anyone else. Become informed and be an advocate for yourself.

My advocacy is now turning to a new area - having a family before my Cushing's becomes worse. I am in the early stages of the disease, and, depending on what I learn from the doctors, I hope my husband and I can have a baby before my symptoms progress.

Gina was the subject of a Live Interview in the Cushing's Help Voice Chat / Podcast series. Archives are available. Interview with Gina

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