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I saw the article on Cushing's in the Boston Globe and called to get the newsletter. As you'll see by my story, things went differently for me. Now that I realize how difficult things can be with Cushing's, I wanted to share my "success story".
I began to notice symptoms about September of 1996. My face seemed rounder to me, I was struggling to lose weight and my hairline seemed to be moving onto my cheek line. By December of 1996, I had decided that I wouldn't leave my annual checkup with my OB-GYN without having some tests done. I had also not had my period in a very long time, but since I had a Norplant, no one thought this was unusual. I had lunch the day of my appointment with a friend who used to be a nurse. When I mentioned it to her, she admitted that she thought I looked steroidal, but hadn't wanted to say anything. Unfortunately, my doctor was on vacation when all my test results came back - normal. I had almost decided that I was just getting old and fat when my husband happened to call his aunt, an internist, who had seen me over the Christmas holidays. She asked if I was on steroids and, when he said no, told him I ought to see an endocrinologist. She mentioned the term "Cushing's disease". With her help, I found Dr. Gilbert Daniels at Mass. General Hospital in Boston.
My first meeting with Dr. Daniels was in February of 1997. He immediately did a battery of tests. Everything was normal except the 24 hour urine cortisol levels. No wonder the OB-GYN didn't find anything with the blood tests! An MRI followed to confirm the presence of a tumor on the left side of my pituitary gland. I was so relieved to find out that there was a reason my clothes didn't fit and I couldn't get up the energy to run anymore.
Dr. Brooke Swearingen performed my surgery on April 30, 1997, removing most of the left half of my pituitary gland. So far it seems to have been successful. I went into the hospital on a Wednesday, left on Saturday, and went back to work the following Friday. I had some headaches and nausea in the hospital and some mild nausea after I came home. I did get a cold after about two weeks and felt horrible until my medication was adjusted up. It took about 6 days to get back down to my current dose of 7.5 mg of prednisone taken once a day. I have begun running again and am up to about 3 miles, 3-4 times a week. I have already lost an inch around my waist. I still get tired, usually needing a nap by the end of a work week, but pretty much feel like my old self again.
Now that I have more information about Cushing's, I can see that other symptoms I had were probably related to the disease. These included Achilles tendonitis, followed by many minor muscle pulls, insomnia, and depression (successfully treated with Luvox). Having read other people's stories, I realize how lucky I am that my disease was correctly diagnosed as soon as I had symptoms that were obvious to me. |
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