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My Cushing's Story-Most of these stories start with, "I knew something was wrong, I just didn't know what". Not me - I thought I knew. I was diagnosed with Type 2 diabetes, and was given oral medication, along with annoying lectures about making "lifestyle changes" - diet and exercise regimens that, for the most part, I had been following anyway. And, curiously, no one in my family was diabetic. After several months, my general practitioner was not satisfied with my progress and wanted me to start injecting insulin. I was not convinced this was necessary, so I requested a second opinion, and was referred to Dr. Gunjan Tykodi, an endocrinologist at my HMO, Group Health Cooperative in Seattle.
I got to my appointment all fired up and ready to make my case against insulin. I was caught off guard when Dr. Tykodi asked me a bunch of peculiar questions about my skin, hair, weight, etc. As I left, she handed me a slip of paper and told me to go to the lab to collect supplies for a 24-hour urinalysis. I thought, "You want me to do WHAT?" (This was before I found out about cavernous sinus sampling...) When I asked why, she said she was testing for Cushing's Syndrome. "It's rare and you probably don't have it," she said, but she was suspicious enough to check. As soon as I got back to my office, I got on the internet and looked up Cushing's Syndrome. My jaw dropped - here was a list of everything that had been wrong with me for the past 10-15 years! Seven months later, after tests at Group Health and at the Pituitary Unit at Oregon Health & Science University (OHSU), I was given a firm diagnosis of pituitary Cushing's disease. Even then, the doctors were not certain exactly where the tumor was located.
Then an epic battle ensued with my HMO for a referral to OHSU's Pituitary Unit for the surgery. I finally had the surgery this past March. The tumor turned out to be on both sides - making me all the more glad I insisted on having the procedure done at OHSU by a skilled, experienced neurosurgeon, Dr. Johnny Delashaw. It was oddly gratifying to be told that the things that were wrong with me were not hypochondria or the result of a self-inflicted "lifestyle", but were caused by a real, live, removable tumor. Dr. David Cook at OHSU, one of the CSRF Board members, told me that during the recovery I would feel tired, achy and depressed. He was right. However, I have to bear in mind that this is actually what I want, since it is highly suggestive of a cure.
But it gives me the creeps to think how close I came to never knowing. Had I not balked at the prospect of injecting insulin, I would never have seen Dr. Tykodi. I am extremely lucky and grateful that she was conscientious enough to follow a hunch, and it is alarming to learn that 3%-5% of Type 2 diabetics actually have Cushing's and may not know it. So my particular interest is in reaching diabetics and the people who treat us.
In June, I staffed a table at the Diabetes Education Fair at Harborview Medical Center, the University of Washington's hospital. I got a chance to introduce Cushing's to a psychologist, a Somali medical interpreter, and vendors of products for diabetics, as well as diabetes patients. I chatted with the doctor who heads the hospital's diabetes program, who of course was familiar with Cushing's but was not aware that there was a support group with local members. Since I had fairly short notice, there wasn't time to get the CSRF booth to me, so I made do with leaflets and a few photographs. But once people got talking to me, there was no need for fancy graphics. As we all know, Cushing's Syndrome is fascinating, especially if it is happening to someone else!
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