My recent trip to the Mayo Clinic in Rochester, Minnesota, was wonderful. The doctors there gave me more insight into Graves Disease than any of my previous doctors, and they had more ideas on treatment options than any of my previous doctors. Unfortunately, despite Mayo's ongoing research into the disease, the true cause is a mystery. Alas, there is no cure.
Apparently underneath it all, I'm becoming a gremlin inside. At least that's one way of describing what the disease is doing to me. You see, I'm one of the "special" cases that, in addition to an overactive thyroid, also developed Thyroid Eye Disease and Graves dermopathy. From what I understand, most Graves Disease patients stop at an overactive thyroid. Some develop TED, but only a small percentage of those go on to develop the dermopathy. Basically my immune system is attacking certain tissues in my body. Doctors aren't sure why, but the thyroid, the tissue behind the eyes, and the tissue in my lower legs/ankles/feet are particularly susceptible. It explains why my eyes are protruding so much and why my legs and feet are so swollen. In fact, when the dermatologist did a biopsy of the tissue on my leg, what he discovered was (sorry for the queazy ones out there) a gooey mess below the skin. Somehow, the antibody attack on that tissue causes a mucous-like secretion that swells in my lower extremities. I kid you not, it looked like something out of a gremlin cocoon.
This condition is so unusual that the Mayo doctors had most of their residents and consultants visit me to see and feel what those symptoms entail. At one point, my dermatologist asked if I'd be OK with some of the other dermatologists coming in to see the dermopathy on my feet and shins and physically touch it. I agreed. I was under the impression three or four my stop by. Actually 12-15 came through. I felt like a side show at the circus! But I understood the importance of doctors being able to see the real thing rather than just read about it and see pictures. I was glad I could provide them that.
The good news out of all this is that the doctors think I'm past the worst of the symptoms. My eyes might get a little more bulgy and my legs/feet might swell a little bit more, but the worst has already hit...or so they believe. The bad news is that that doesn't mean everything should or will go back to "normal." I was advised several times to take note of my body's "new normal." There are various treatment options for the different symptoms, ranging from a vitamin supplement to a chemotherapy treatment and even surgery. I plan on taking the next several months to see what option(s) is (are) best for me--and what insurance will cover!
What impressed me the most about Mayo was the collaboration among the doctors. My only scheduled appointment was with an endocrinologist, but he arranged for me to see an ophthalmologist and a dermatologist within 24 hours. They all shared access to my information. The ophthalmologist talked about Mayo's ongoing research into Graves Disease, as well as the latest European studies, while the dermatologist brought in other dermatologists and consultants to brainstorm treatment ideas. This experience was a shining example of how health care can and should be: Doctors working together for the wellbeing of the patient. I felt as though I was going from team member to team member for their expertise, rather than being handed off from one doctor to the next for the sake of convenience. And these doctors actually communicated with each other! All of this affirmed my decision to pursue an appointment at Mayo. I would highly recommend anyone with medical questions to do the same.
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