Viti-what?

Nothing in life is guaranteed.  Cliche, yes, but there's a reason people say it so much: It's true.  I was reminded of that recently during a visit to my endocrinologist.

For the last four years, my doctor and I have focused on the goal of getting my thyroid hormone levels within their "normal" ranges.  At the height of my Graves' Disease complications in 2010-11, my levels were beyond abnormal.  After two years, my levels were consistently within normal ranges (I think my doctor was happier than I was—a moment I'll never forget).  As expected, the worst of the symptoms were subsiding.  We felt as though everything was finally under control, although the problems never disappeared.

Then, about six months ago, I noticed a slight discoloration on one of my cheeks.  It was strange but small, so I didn't give it much thought.  As the weeks went by, the discoloration become more widespread and noticeable.  While I hoped it was the unfortunate result of spending more time in the sun (like some type of strange sunburn), a part of me knew there was a different reason.

Turns out it was the lingering effects of Graves' Disease.  Despite everything being normal, I have developed vitiligo, another autoimmune disease.  According to the National Institutes of Health, vitiligo "is a disorder in which white patches of skin appear on different parts of the body.  This happens because the cells that make pigment (color) in the skin are destroyed."  For some reason, the immune system attacks those cells.  I don't know much more than that at this point.  My doctor initially didn't think there was much that could be done, but she later reversed course and recommended I see a dermatologist.  I hope that something can be done to reverse the pigmentation loss, or at the very least stop it, but I'm pretty sure it's irreversible.

This latest diagnosis was the last thing I needed.  As many people know, I'm already very self-conscious about my bulging eyes (thanks, Graves ophthalmopathy!).  As you may have guessed based on my last post, I've become self-conscious about my bumpy legs (thanks, Graves dermopathy!)  Now my face has discolored splotches, and that weighs heavily on me psychologically (thanks, vitiligo!).  I sadly feel as though my immune system is turning me into a freak show, and that's not easy for a single guy to accept in a superficial world.  Frankly all of it's embarrassing, unattractive, and unsightly.  I guess if there's any silver lining it's that I'm not working in television any longer.  That's pressure I don't need!  What I need instead is mental toughness.  Lord, help me!

Well, this got supremely personal.  I couldn't help it, and I hope you'll forgive my rants even though, in the grand scheme of things, my diagnoses are not fatal or physically debilitating like many other more well known diseases.  Nonetheless, the effects of Graves' Disease are real and ongoing.  Even when you think everything is under control.

My Humps

A friend recently asked me what happened to my leg, and, without skipping a beat, I answered with the same explanation that I’ve used for years whenever someone asked.

“That’s a scar where I was burned when a pot of boiling water fell on my leg during a camping trip in middle school,” I said.

The scar is about the size of my hand on my right leg below the knee.  It’s smooth and plastic-like, and the center lacks pigmentation.  Usually a few follow-up questions come next, asking how it happened or how much it hurt.  I have answers ready for those questions, as well.  But this time was different.

“No, I mean your other leg,” he said, pointing.

My other leg?  I wasn't immediately sure what he meant by that.  Did I burn my right leg, too, and not realize it?  Was it bleeding?  I slowly looked down.

“Oh, that,” I answered.

What he saw was a hump (about the diameter of a half dollar) on my left shin, the largest of several on my leg, all of which are mysteriously related to Graves’ Disease.  These leg issues started approximately five years ago when I lived in Charlotte.  My burn scar, which used to be a depression in my leg, became raised.  That eventually went down, but then my lower shins became puffy and my ankles swelled to the size of softballs.  The condition is called pretibial myxedema, and doctors said the best treatment option was to get my thyroid hormone levels under control (and hope for the best).

My levels stabilized during the next couple of years, and the swelling went down, albeit much more slowly than it arrived.  But like rocks that appear when a swollen river recedes, so too did these humps.  The only difference is that these humps weren’t there before and shouldn’t be there now.  Worse yet, they themselves are not receding.

Doctors told me that pretibial myxedema occurs in a very small percentage of Graves’ patients, but they don’t know why.  The condition is so uncommon that I was one of only a handful of patients whom my dermatologist at the Mayo Clinic had ever seen with it in approximately 40 years of practice.  He asked for my permission in allowing the interns, residents, and consultants to see it, too.  I said yes, realizing that this may be one of the few times they would ever see it outside of a textbook.  The dermatologist then took a biopsy of one of the humps, and the gooey mucous that he removed was eerily reminiscent of a scene from the Gremlins.

Thankfully, the humps don’t hurt; they’re just unsightly.  Surgical removal is not an option because the mucous becomes intertwined with tissue that could be irreparably harmed by invasive digging and poking around (diggery pokery?).  The humps are fairly hard but become soft with massaging.  The problem is that a dull pain develops when I massage them too much.  I figure that has to do with the intertwining of sub-dermal tissue.

I hope the swelling eventually goes away completely.  But I fear that, like my puffy and protruding eyes, this is a condition that lasts a lifetime.  Anyhow, that is the story of what happened to my other leg.  (Bonus points if you can help me get this explanation to a one-sentence stock answer for whenever someone says, “No, your other leg”!)

Swelling on my lower left shin.  Brings a whole new meaning to leg humps.