Holes in my shoes

I feel like I should start this post with “Dear Diary.” Well here goes. I try not to talk about it too much, but a couple of years ago I was diagnosed with a form of hyperthyroidism called “Grave’s Disease.”

It sounds really scary, but actually, a lot of people have it, and the rate of incidence is higher in women. The gist of it is this… Your body over-produces a hormone called TSH which is meant to stimulate the thyroid to create another hormone called Thyroxine (or T4), which is supposed to regulate your metabolism. For hyperthyroid people, the body produces way too much TSH, making your thyroid overproduce T4. This leads to all sorts of bad symptoms — overly fast metabolism, weight loss, goiter (i.e. swollen thyroid gland), constant hunger, heat intolerance, heart palpitations, excessive sweating, anxiety, ophthalmopathy (thyroid eye disease)… the list goes on, but those are the main ones I have experienced. Fortunately, my symptoms were not as bad as some other people have experienced with Grave’s disease.

Anyway, it turned out I was allergic to the main medication that people go on in an attempt to regulate the thyroid, methimazole/tapazole. I went on propylthiouracil (PTU) to try to regulate it. PTU has some nasty side-effects, the worst of which is potential for liver damage… so when my thyroid failed to be regulated 18 months later, my doctor recommended a more final treatment. The options were surgery to cut out the thyroid (or part of it, I guess) and taking a radioactive iodine (I-131) pill.

The main thing about doing one of those treatments, is that your thyroid is now destroyed… essentially you are giving up on the possibility of getting it regulated again. So this means that patients almost always go hypothyroid (i.e. since your thyroid is now partially destroyed, it doesn’t produce enough T4). The treatment to hypothyroidism is just to take a hormone supplement pill every day for the rest of your life… not so bad, considering the supplement is super easy to manufacture, cheap, and available just about everywhere.

Additionally, each of those treatments have their own potential for side effects. For the surgery you have to take a week off. The surgery has all of the risks that any surgery has: scarring, anesthesia, bleeding — 1/500 people have to go back under the knife if the blood vessels they tie up get loose and you start bleeding internally. Plus, since the neck is a delicate area of the body, there is risk to the surrounding glands if the surgeons mess up. Mainly, the risk of damage to the parathyroid glands, which regulate calcium in your body, and the risk to the vocal cords (i.e. you get to be hoarse for the rest of your life).

The radioiodine, on the other hand, is a much simpler procedure. You just take a pill on Friday, stay home over the weekend, and then head back into work on Monday feeling mostly fine. There are some minor temporary “feeling shitty” type side effects, but it’s not so bad. There is risk also of thyroid storm– your thyroid cells die all at once, releasing a bunch of T4 all at once, which can be very dangerous– but this is very rare. One concern is the worsening of thyroid eye disease, but my thyroid eye disease wasn’t really that bad, and my ophthalmologist said it was ok to go forward with it.

However… and you might have already guessed this… but the radioiodine is, well… radioactive. Taking radioactive materials into your body has the potential for cancer in the future.

So here’s the thing… They give radioiodine to people who already have thyroid cancer to try to kill the cancer off. When they do that, they give way more than they would give a patient with Grave’s (I have heard 10x more, but I am not sure about the accuracy of that number). Studies have been done, and it has been shown that the amount they give to cancer patients does increase the risk for other cancers by a small amount. Studies have also been done on the amount of radioiodine they give Grave’s disease patients (around 30 millicuries), and as of press time, they haven’t been able to conclusively show that this amount of radioiodine increases the risk for cancer — there is too much noise in the data to prove this.

So, after consulting at length with my doctor and my ophthalmologist, under their recommendation, I went with the radioiodine treatment. It seemed like the safer option. The idea is they give you enough to kill off enough of your thyroid so that you go hypothyroid. This reduces the risk of a relapse of hyperthyroidism, and since hypo is easy to treat, it’s not a big deal.

I think they gave me around 25 mCi. They wanted to give me more, but I had a very large goiter and they were worried about thyroid storm.

So here I am half a year later, in a new location (moved for a job), with a new doctor… I have relapsed, and I am hyperthyroid again. I am facing the same decision once again: surgery or another dose of radioiodine… only the potential cancer-causing effects of radioiodine are cumulative, and another dose raises my chances of getting cancer in the future. With that said, they still don’t actually know if the cancer risk has gone up or by how much, because even at two doses, there is still either too much noise in the data, or not enough data to know for sure.

I haven’t been able to come to a decision on this. I have talked to my new doctor, as well as to a surgeon she recommended about the risks of the two treatments. I’ve talked to friends, family, I’ve been trying to contact my old doctor to get her opinion, I’ve done research, I’ve paced around in circles wearing holes into my shoes…

…and I’m no closer to a decision. I’m afraid that talking to a million more doctors won’t get me closer to a decision. And all the while, I am anxious, not just because of the decision I have to make but because of the hormone imbalance in my body. I am super sweaty and have occasional heart palpitations. I feel like my work is suffering– I nearly started crying at work today for no reason other than I also have these crazy random mood swings. If I don’t make a decision soon, I will need to talk to my current doctor to get onto the PTU again, just to keep the symptoms down. Thank the stars Portland is cool and rainy, because my sweatiness and heat intolerance is… er… intolerant.

I know it’s not that bad. Like I said, some people have had way worse experiences, both with Grave’s Disease and in life in general. That’s why I try not to talk about it much… I feel bad complaining, when so many people have such great difficulties to overcome. But I can’t help but fret and wear holes into my shoes.

EDIT: After talking to the doctors and weighing the risks, I decided to go with the radioiodine treatment again. Last time, I was temporarily living with my parents for this part. I remember my mom following me around the house, wearing one of her flowery shirts, clinging to my dad’s old soviet Geiger counter, and gasping every time it beeped. This time I’m living with my boyfriend, so I expect it to go smoother. They are giving me 15 mCi… very little, but hopefully just enough.

5 thoughts on “Holes in my shoes

  1. Interesting post. My mom probably had undiagnosed hypothyroidism for years, but was diagnosed with Graves’ after a thyroid storm at about the age of 39 (possibly around the time she got pregnant with me). She was treated with radioiodine while I was in utero. 🙂 She also had the opthalmopathy, although I got used to it and really forget she had it unless something reminds me. Lately I’ve been wanting to get my thyroid levels checked soon as I’ve been having increased anxiety, lots of energy (kind of unusual for me) and a feeling of a lump in my throat. :\ Anyway, it’s cool to read about others’ experiences with thyroid problems!

    1. Thanks for commenting! I’m surprised to hear your mom was treated with RAI while you were in utero… they usually recommend against this, seeing as the radiation may be harmful to the fetus. Anyway, you should definitely get your levels checked if you suspect something. It’s much easier to find out sooner rather than later, and getting the blood work is usually covered by most insurances. Good luck!

      1. I should’ve mentioned that it wasn’t intentional! My mom didn’t know she was pregnant for several months, and had actually thought she went through menopause (probably because one symptom of hyperthyroidism is shorter/lighter/altogether stopping periods!)

        Thanks. 🙂

      2. Oh I see… well, I decided to go through with the RAI this time (again), and they made me take a pregnancy test. I really hope it works this time, because I don’t want to go back into all this craziness. I had a hell of a time with scheduling things with the doctors. That’s another reason to get checked early, if you suspect something may be off… sometimes it takes a long time to get schedules and insurance and everything worked out, so it’s better to know sooner rather than later.

  2. Doing RAI is a tough decision; but it’s often for the best. It’s good they made you take a pregnancy test. Probably the only reason they didn’t with my mom was because it was the ’80s and they didn’t know any better, OR she thought she was certain she went through menopause — or both. I hope it works for you this time too! I’ll try to get my labs done soon to check my thyroid levels. It does sometimes take a long time to sort things out. :\

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