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When I first knew I had Cushing’s Disease, I was 19 years old and just beginning my sophomore year of college at UVM. After having pneumonia, gaining 50lbs my freshman year, and having my first kidney stone, the diagnosis was solidified in my head. I had researched online and finally found out what was wrong with me.
I saw my primary care physician (PCP) when I came home for a break, and she agreed I should see an endocrinologist. Many tests later, she told me the “good news” that everything was fine and I should continue to diet and exercise. I ended up seeing a few more endocrinologists while I continued to gain weight and cry to my PCP about feeling gross and looking even worse. She agreed that this was not a normal amount of weight to gain in a short period of time but didn’t know how to help without any irregular test results.
I finished three and a half years of college, fighting my way through the kidney stones, shingles, pneumonia, and endless upper respiratory functions. I drove to class because my legs were not strong enough to walk. I started bleeding uncontrollably and came home once again to see my physician team, and my gynecologist immediately knew something was very wrong. She ordered tests to see how my pituitary gland was functioning, (it wasn’t normal) and she ordered a brain MRI to see if she could see a deformity or tumor. I had a 5 mm pituitary adenoma and that sent me to a 4th endocrinologist.
I got a diagnosis 18 months later in the fall of 2009, and rushed to have surgery before a friend’s wedding. After about a week of losing weight, I woke up one morning and felt a switch, my face was very swollen, and my belly was as hard as a rock. I began to say I was pregnant when people asked, because I was too emotional to explain. On my hunch, and then lab results, I had a second pituitary surgery 2 months after the first. As I was rolled out of the recovery unit to my room for the night, I told my parents that this time didn’t work either. Everyone disagreed and told me to give it a few days, but I was right, and my surgeon honestly told me he didn’t think there was any change.
I spent the next 6 months trying different medications, Cabergoline and Ketoconazole, and gaining weight overnight. I reached a high of 285lbs before having both of my adrenal glands removed in September of 2010. It took me about 6 months to start losing weight, and it was only a small portion of the 100+lbs I had hoped to lose. A year later, I made the very dangerous decision to stop my steroid medication that was allegedly keeping me alive, and ended up being okay and losing the rest of my weight. (I DO NOT advise doing what I did; it was extremely dangerous and not very smart).
Today, in May 2012, I’m 26yo, 20 months after my final surgery, and I am 175lbs and feel okay on most days. I am back on steroids, and am still struggling with having enough energy to go to work or walk across a parking lot. I blog about my experience with Cushing’s and try to tell as many people I can about my experience. There IS hope! Someday, your nightmare with Cushing’s will get better, or even end. I didn’t think I would make it through, but somehow I did, and I continue to fight to make it through every day.
If I can be of help to anyone, please let me know!
Newsletter: Spring, 2012