My History with Hypothyroidism

M.C. Wood shares her history of dealing with hypothyroidism, and how one particular drug made all the difference... "When I was 19 years old I was diagnosed with Subacute Thyroiditis and hypothyroidism of the Hashimoto's Thyroiditis variety. At the time, none of that meant anything to me. For some time I had been feeling unwell. In fact, I'd already lived with a long undiagnosed case of mono, so I hardly noticed being ill again. It was only after I awoke with a golf ball-sized lump in my neck that I realized there was a new problem...

If I recall correctly, there was some early confusion about just what was wrong with me. After all, wasn't Subacute Thyroiditis associated with thyroid disease resolvable through medication? How could a chronic, lifelong disease be knocking around in my thyroid, too? Of course, I could be wrong about his because I simply went about doing as I was told, not really paying attention or caring to pay attention to what was happening. I recall only that I was told I'd be fine, back to normal, good as new.

Sometime after diagnosis I was put on Synthroid, and my TSH levels began to hover in the "normal" range. But I felt nothing like "normal," and this went on for so many years that I believed for a time (and was told as much by family and doctors) that I was imagining it. Indeed, by the time I was 27 I honestly couldn't remember the feeling of wellness, only the idea of it.

As a child I was always in motion, and interested in life. I was not only a really athletic kid, I was also pretty bright. But by the time I was 17 I would wake up after sleeping for a good eight hours and be exhausted. Though the mono was diagnosed many months after I first contracted it, my continued feeling of depletion didn't go away.

After finishing college and quitting my sport to pursue graduate work in philosophy, I left my home state of California for school. In South Carolina I started on Levoxyl for the first time. Nothing had changed dramatically in my health except I continued to be overweight, continued to be tired even after ten hours of sleep a night, and began having trouble sleeping through the night. I'd been a very light sleeper for a few years, but now I was barely skimming the surface of sleep.

Still, doctors would take my blood, pat me on the head, and tell me I was fine. Just look at my blood work: "normal." I began to question what was "normal," but was told kindly or condescendingly, that my blood showed I was fine so any problem I had must be psychological.

There is no doubt that I should have taken much more control over my health. The fact is, however, I didn't really know where to turn. I tried educating myself on natural therapies, nutrition, and so forth, and even attempted to read books about my disease. The problem, however, was that I wasn't getting anywhere. Nothing seemed to work, and so I began to think that perhaps my feelings of exhaustion really were all in my head.

I did make some progress in my mid-twenties. Upon completing my Master's degree in Philosophy from the University of South Carolina, I returned to my sport, determined to make a go of teaching, training, and possibly finding sponsorship to compete one day as an Olympian. I met a woman who sold herbal weight loss pills. Between taking diet pills whose ingredients included Mah-Huang and doing physical work a minimum of 12 hours a day, 6 days a week, I dropped forty pounds. Though always tired, I was beginning to notice a difference between physical fatigue and mental exhaustion, a difference that hadn't been clear to me before.

I was brought up with a work ethic such that illness is not considered a good excuse to stop what you're doing. Naturally, then, though I found that I was tired all the time, and wasn't sleeping well, when I was working in my sport, (before I started, and after I stopped, taking the diet pills) my body was more "alive" than it had been in a long time. The moment I sat down, however, it was as if a physical weight was pressing on my brain, and my brain was falling down to my feet.

I also noticed that, when teaching, or attempting moderately strenuous thinking, I would get lost. Though I had a nagging sense that I could "get it" when I was in college and graduate school if I just worked harder, I couldn't help but believe that my brain was as if in a straightjacket. How could I prove it? I had no other mental life to which I could compare this one. Still, the compulsion to do more work in philosophy led me back to graduate school and away for good from a full-time sport career.

I returned to the University of South Carolina and its new Ph.D. program. Though I'd always felt like I was catching up academically to make up for all the years I'd spent in sport instead of studying, I persistently felt frustrated that I experienced only brief "windows" of energy ? never more than three or four at a stretch, and always followed by a crushing fall to intense fatigue. Things got worse. One summer I plumped up almost overnight, could barely stay awake during the day, (though I still merely skimmed sleep at night) and experienced a hoarse voice like I hadn't seen since yelling across a field to groups of student athletes for hours a day. Classes were about to begin again, and I could barely put two sentences together.

My endocrinologist told me that my hoarse voice was not related to my goiter. (though it shrunk a bit over the years, it never went away.) Nonetheless, he took a fair amount of fluid from it, and that's when we first discovered that I had a cyst. I had somehow gotten back on Synthroid. A medical doctor who as also one of my professors suggested I try another brand of thyroid. Going back to Levoxyl helped a bit, but memory lapses were now affecting my ability to function. There was one frightening experience in which I was lecturing for an absent professor to a room stocked with 200 students. I began a sentence and in the midst of it, could not remember what I started or where I was going ? I had no idea "where" I was in my thought. Fortunately, notes helped, but for me it was an unforgivable lapse. How could I do decent intellectual work, pass my exams, write a dissertation, and most importantly, become a good teacher if I was a mental mess?

Luckily for me, I had the support of a boyfriend who was infuriated by the poor treatment I'd received for so many years, and encouraged me to aggressively pursue my own health. First, I began looking for information geared toward the average thyroid disease patient. Luckily, I found thyroidabout.com. In addition, we moved back to California, and I went to see Dr. Christine Darwin at UCLA. In June (or July) of 2001 we discussed the discrepancy between my mental life and my blood work. I asked her how I could get more energy, and that I'd been reading about Tyrosine. She told me about Cytomel and prescribed it for me. The transformation was almost immediate.

Where before Cytomel my mind was a dimly lit and tiny room, after taking it daily with my Levoxyl, I experienced a bright and airy mansion. I can read and think without those terrible lows for hours and hours at a time. I can work a 15 hour day, go to sleep, and rebound for another day of the same. Sure, I get tired, but there's a big difference between feeling tired and feeling utterly unable to function.

When I returned for a check-up, I asked Dr. Darwin why nobody ever mentioned this medication to me. After all, it had been out since 1999, and I thought I had made clear my feeling unwell. She responded that this brand was not widely known. I wanted to be angry. I wanted to go back to school and really experience what I'd missed since I was 19.

I turned 34 this past December, and I've been taking Cytomel now for a year and a half. I'm still having problems with cysts, thyroiditis flare-ups, and feelings of nausea associated with pressure from the goiter, but I'm still feeling mentally quite good.

You may recall a movie called "Charlie," in which Cliff Robertson plays a mentally handicapped man who participates in an experiment which makes him really smart. The only problem is that the effects of the experiment don't last, and Charlie returns to his former condition. My biggest fear is that one day, for some reason, I won't be allowed to take Cytomel, or a similarly affecting drug. After finally living a life I once feared beyond my reach, I'd hate to have it taken away. No matter what, however, I will continue taking my Levoxyl and Cytomel, be vigilant about finding new medications and treatments, and be grateful I live during a time when medications like Cytomel are available.