Celebrating A Slow Race: a.k.a. Life Without A Thyroid

A couple years ago, I wouldn’t have dreamed that I would celebrate a 48:47 five mile race. 9:45 mile splits weren’t something I was drinking champagne over…

…but that was my time in the Frostbite race last weekend. Things have changed, and I want to explain why.

Here’s a little bit about what life can be like without a thyroid, especially because the last few months have been terribly difficult. I’m not a doctor, but I’ve seen many doctors about this, so here’s my story, with incorrect medical terms and all. 🙂

A bit of background: our thyroid glands basically control all the “speeds” in our body, and they affect the function of almost every organ, too. They control our cell growth, skin cell turnover, body temperature, moods, weight, hair growth, intestinal function… basically, everything. Having the right amount of thyroid hormone is important and simultaneously difficult for me, because I had my thyroid removed five years ago. Our bodies normally fluctuate the amount of thyroid hormones they produce, so when you take a static synthetic drug instead, things get complicated.

About this time last year, my endocrinologist changed my thyroid medication combination, and dropped me from two hormones to one. Our bodies (thyroid gland) typically make many different thyroid hormones. When you don’t have a thyroid, like me, doctors often supplement with just one or two, and the cells in our bodies convert those to the different types of thyroid hormones that we need to live. Historically, I haven’t had very good luck with the conversion part, which wouldn’t normally be a big deal, if I had a thyroid that made the full variety of hormones.

When we made that switch, I didn’t feel immediately terrible, but after a few weeks, I started to feel just a little tired. It’s difficult to explain, but the best analogy that I can come up with is that I’m on the highway, and when I put the pedal to the metal, instead of going 70, I can only make it to 60. That’s still fast enough for me to get where I’m going, but it’s frustrating knowing I used to be able to go 70 and get more miles covered, faster.

Each month, despite my workouts (training for and running my ninth marathon was in there this spring), I gained a few pounds. In September, I found myself 20 pounds heavier than when I’d started the year, and my hair had started falling out.

I called my endocrinologist, he ordered blood work, and he adjusted my dose. They usually just call me and make the adjustment- it’s such a small amount that I usually just take an additional half a pill per week or another very minor change. That’s pretty typical- I have blood work done every 3-6 months, and they adjust my dose 5% or 10% up or down. When his nurse called me this time, though, she said they were cutting my dose in more than half. I immediately panicked.

I said, “This has to be a mistake. I don’t think I can live on that!”

She was insistent that this was the dose the doctor wanted me to take, and reminded me that they wouldn’t refill my old prescription, so I was expected to take this very low dose.

When I got off the phone, I burst into tears. I imagined myself slowly turning into a sloth, gaining back the 100 pounds I’d lost, and going bald.

When I was done being upset, I was mad. Flaming mad. How could they do that to me? I’ve seen this doctor for years. I’ve been a good patient! When I raised my concerns, why didn’t they listen to me?

When I was done being mad, I worried. I cut my dose to what they asked of me. I was okay for about a week, then I started being very VERY tired. Lots of naps. I gained an additional ten pounds in the first two weeks, and I had to buy some new clothes. I left the store, and cried in the car. I struggled to keep my positive attitude in our community and among my friends. I didn’t want to tell anyone what was going on because I was afraid people would judge me for gaining weight, or not want to hire me because they don’t understand thyroid function and they’d think I was permanently sick (and thus, unreliable, or the illusion of such).

My hair fell out in large amounts. I estimate that I lost about a third of my hair this year. I’m pretty lucky that I have such thick hair- it doesn’t look bad, and I’m thankful for that.

I also started losing some of my muscle strength. I don’t look very different, but I definitely feel different. All of my workouts are so much harder now. A perfect example of that is a plank- I used to be able to hold a plank for a couple minutes, and last week I tried it, and struggled after 20 seconds. I barely believe I can run at all or sit upright with that kind of poor core strength. Running is harder, and I’m slower, and it lingers in my body longer. Recovery takes more time than it used to.

My skin started breaking out, I was upset with mood swings all the time, and (the final straw) I didn’t get my period.

Something was obviously wrong with my body.

I was scared. This is like something out of a nightmare. I knew something was wrong, I tried to say so, and yet, I was completely at the mercy of my doctor and his staff. How sick would I need to be before I could call back and tell them, again, that there had to be some mistake?

Well, I made it three weeks. Then I called, and turns out, yes, it was a mistake.

I think that it was a typing error.

This whole thing shook my faith in the system so terribly that I have nightmares about it. When something is wrong, and I know it, I feel powerless. That’s one of the worst places for a patient to be. It bothers me at my core to know my doctor could kill me and even if I saw it coming, there’s not a damn thing I can do about it (for the record, I did get a second opinion at the UW, and they agreed that it was a mistake).

I feel so silly for thinking- five years ago when I had surgery- that the worst part of this would be that I’d have the big scar on my neck… so I actually had a plastic surgeon do the closing part. You can hardly see my scar, unless you’re looking for it.

I really thought that I’d feel better after surgery. In reality, sometimes I do, sometimes I don’t.

So, back to the story… I called my endocrinologist’s office, and said, “Hey, I’m falling apart, what gives?” I also requested to go back on my medication combination from last year, and my doctor obliged. I didn’t even care how the mistake happened at that point, I just wanted to feel better.

I haven’t seen my doctor yet- I have an appointment at the end of this month. I wrote him a letter to take with me, since I’m afraid when I get there, I’ll just lose it and I won’t be able to adequately express my frustration and hopelessness.

The good news is that I’ve been back on the combination of medications for a few weeks and I’m feeling really well. I lost 12 pounds in the first three weeks, and I think my body is responding quickly, considering what had just happened.

That, my friends, is why I’m wildly celebrating that slow five mile race time. I worked my ass off to run that, and even though I’ve run much farther, much faster, and both farther and faster in the past, I’m learning to accept that I’m on a journey. I won’t ever take feeling good for granted.

As said in my kick-ass yoga class this morning, “Nothing is permanent. Everything is temporary.”

This race time is the best that I could do at the time, and I’m very proud of my performance.   Photo: Jim Gill

Cheers, friends!

Miles this year: 382.15