Tuesday, January 24, 2012

Eyes Wide Shut

My brother says it freaks him out a little bit, and rightly so. When I sleep at night, my eyes can't close all the way. There have been times when he's said he didn't know if I was asleep or awake. And he's not the only one.

As I've mentioned before, some Graves Disease patients develop an associated problem called Thyroid Eye Disease (actually, I think the technical name is Graves ophthalmopathy). I am one of those patients. Basically it works like this: My immune system makes antibodies that, for reasons unknown to doctors, attack certain tissues in my body. Those tissues include the thyroid, as well as around the eyes and the lower leg/foot (called Graves dermopathy). Specifically, the antibodies target fibroblasts, which can differentiate into fatty, collagen-like cells. These expand, and the muscles become inflamed. The eye's natural ability to drain fluids becomes challenged, and swelling occurs.

This is why if you ever look closely at my face, you'll notice swelling of the area around my eyes. The swelling causes my eyes to bulge or protrude from my face, such that the upper eyelids retract, and I sometimes look like I'm surprised. Since more of my eyes are exposed, they dry out more quickly and appear red. It also explains why I'm constantly wiping my eyes, as well as putting in drops. My body tries to produce more tears to keep the eyes moist, but that's often not enough. Also because of the bulging, I'm much more sensitive to bright lights, wind, heat, and cold.

You may be thinking at this point, "That's unfortunate, but what does this have to do with your sleeping?" Put simply, because the swelling is pushing my eyeball further out of the socket, my eyelids--which are only so long--can't fully close at night. If I try really hard, I can close the lids on my left eye. But who can maintain that when they sleep? Not me, and I end up with an eye that closes about 90-95%.

Perhaps that doesn't sound like a big problem, but even the smallest bit makes a difference. Without fully closed eyelids to keep in the moisture, my left eye (which protrudes more than my right) has a tendency to get really dry. In fact, I wake up at least three times every night because the pain of a dry eye is so sharp. I have eye drops on my nightstand, but that's only a temporary relief. Sometimes, if my body is so tired that it tries to ignore the pain, I'll wake up with big tears streaming down my face because my body's doing everything it can to prevent my eye from drying out. It's been at least 18 months since I've slept through the night without waking up because of this. And as I implied above, this is just as much an issue during the day when I'm awake.

The good news is the problem is less painful when I'm less stressed. Since leaving work in June 2011, I've had no more than three or four nights when the pain was so intense I started crying on top of the crying my eyes needed to stay lubricated. Before that, I had three or four of those nights...per week. In addition to that, I've started drinking more water and taking selenium supplements, as suggested by the ophthalmologist at the Mayo Clinic. Both are helping.

The bad news is that the "damage" that's done is likely permanent. The swelling may go down slightly over time, but all my doctors have said that what's done is done. There is a surgical option to reduce the swelling. That's actually a fiction, though, because doctors don't actually remove the swollen, fatty tissue. Instead, they shave away some of the bone in my skull to create essentially a bigger eye socket. That gives my eye and its associated inflammation more room to settle in, thus reducing some of the proptosis (bulging). While this may be inevitable for me, I'm not crazy about the idea as of today. I've never had surgery, I don't know if insurance covers it, recovery would last a week followed by temporary double vision, and I keep wondering what happens if there's a complication.

So there's a look into my eyes. I guess you could call them a window to my Graves Disease. Gives new meaning to the idea of sleeping with one eye open, huh? I actually do!

Tuesday, January 17, 2012

Mighty Mayo Medicine

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.

Saturday, January 14, 2012

Remember the Warning

I've been sick the last five days with a lingering head cold. I don't get sick like this often, and when I do, it doesn't usually last this long. I can thank Graves Disease for that. Sort of.

With all the sniffling, sneezing, coughing, aching, congestion, stuffy head, and slight fever, I went to the closest pharmacy to get the medicine that promises to treat all that and get me through the day without making me drowsy. Sitting down to take my first dose, I looked at the drug information to make sure I was taking the appropriate amount. That's when I discovered I shouldn't be taking this medicine at all!

The side of the box includes a warning for people with thyroid diseases. Apparently the problem is an ingredient that raises your blood pressure. One of the symptoms of Graves--and hyperthyroidism--is an increased heart rate. Add a stimulant to that, and the result could be...well, not good.

The good news is that since my treatment with radioactive iodine, I'm now considered hypothyroid (though I'm still an active Graves Disease patient; more on that in another post). Still, I didn't want to take any chances. I foolishly thought I could let the cold run its course in a day. That didn't work. Then I loaded up on zinc and vitamin C, as well as the nighttime version of the medicine I'd already bought (since it'll make you drowsy, it doesn't have the stimulant the daytime version has). Within a day-and-a-half, I was about 75 percent back to normal.

Fortunately all wasn't lost with the 32 DayQuil LiquiCaps I bought but couldn't take. I gave some to a friend who also has been dealing with the cold. I guess if I can't heal myself, I'd like to heal someone else. The biggest lesson through all this, though, is that I need to read warning labels carefully!

Thursday, January 12, 2012

Soup for the Substantiated Soul

He came out of nowhere. A friend suddenly appeared while I waited in line for soup. What happened next will stay with me for the rest of my life.

"So, I'm guessing in a past life you were a news anchor," he said sheepishly.

"Yeah," I replied. He and I had recently added each other as friends on Facebook, and he saw some pictures of me on the anchor desk and reporting on location. Apparently he didn't think they were pictures of me at first. Instead, he thought they were pictures of somebody closely resembling me, and I was living vicariously through said somebody. His girlfriend told him the pictures were of me, but even my reply wasn't enough to convince him.

"Then why do you look so different?" he asked with doubt.

Something in me changed at that moment. I wasn't mad or offended. Actually, I felt slightly vindicated.

I was diagnosed with Graves Disease in early 2009 and initially treated with radioactive iodine, which left me with very little of my thyroid. For about a year afterward, everything was fine. In the summer of 2010, however, complications began developing. By winter, my eyes protruded so much they couldn't fully close at night, I was gaining weight, my lower legs developed a rashy feel to them, my ankles/feet would swell to the size of softballs, my face appeared puffy, I had intermittent abdominal pangs, my eyes were overly sensitive to wind/cold/sun, my vision began to blur slightly, and my energy level and motivation was lower than a snake's belly in a wagon rut. I knew I had to make a decision, and after talking with my doctors and my family, I knew that I needed to take some time away from work. What used to be a job I loved was more physically, mentally, and emotionally exhausting than anything I'd ever experienced before--even NYS Police Academy training! The stress was multiplied a hundred-fold, and even if it wasn't the direct cause, it wasn't a solution either.

My bosses could not have been more understanding. They were very patient with me about the whole process, and so many of my friends and coworkers were equally supportive. Even some complete strangers. But I couldn't help but wonder--in the back of my mind--were there doubters? Were there people who felt I wasn't really sick and that I was looking for an easy way out? After all, who's heard of Graves Disease, much less knows what it really involves? Even my lawyer at the time brought it up at one point: "I'm assuming you're not lying to me, and if we needed to get a letter from your doctors, they'd tell me exactly what you just told me."

That's why, in some ways, I'm glad about today's exchange during the lunch hour. It was like an acknowledgement that I'm different now than I was before, and there's a reason why I left my job. Of course, I knew that and so did my loved ones, so why should it matter? Good question. Maybe it didn't. But either way, I appreciated the sense of closure it seemingly brought.

By the way, in case you're wondering, I answered his question by explaining that I had a thyroid disease that was altering me physically (I just can't lie about it when asked, not even to the Dalai Lama, but that's another story for another day). He felt bad, despite my best efforts to assure him otherwise. Fortunately we still smiled when we went our separate ways...no hard feelings. And, if you're wondering about the soup I ordered: A tomato-based vegetable soup with beef.