What It Feels Like: Destroying a thyroid gland to treat Graves’ disease

Graves Disease

A radioiodine ablation?

It’s the most lacklustre thing. After three consults and some extra tests, I was given [radioactive iodine] to drink. It looked like water, and it didn’t have a taste.

[The health-care workers who were wearing] hazmat suits told me to exit the hospital as quickly as possible. For three days, I had to self-isolate [to prevent exposing other to radiation], which is kind of funny looking back now, since all the rules were similar to COVID rules.

Did you feel anything afterwards?

Nothing but a sore throat, which was kind of strange because I was burning out a major gland in my body. But afterwards, I ended up with low hormones which was something I’ve never experienced before. It’s basically like having a sick, tiring depression until your hormones come back up.

How do you manage without a thyroid gland?

I take a combination of T3 and T4 hormones to replace [the hormones the thyroid would produce]. There can be issues when you’re trying to get pregnant and stuff like that, but there’s no intentions of having children here, so that’s fine.

My endocrinologist did warn me about weight gain, but I wasn’t prepared for it. Because you burn out the thyroid, your entire body’s metabolism comes to a halt, and then picks up again. So, you put on weight, but it’s hormonal weight, so it’s very hard to get rid of. I had to come to terms with the fact that my body was going to look different, and being okay with that.

[It’s also] shutting out other people who offer ideas on diets and exercise. The weight gain has nothing to do with that — and as my hormones went back to normal, my weight decreased as well.

Were there any other side effects after the ablation?

I guess it’s a new variation of normal. I say normal [but] I don’t really know what normal is. I’ve had this illness for so long that I manage it day-to-day. I have reached an equilibrium. I just always have to be cognizant of my [thyroid] levels.

What brings you joy in your life?

My cattle dog, for one. My partner and I both started rock climbing last year – rope climbing is actually relatively low impact — and we also do a lot of hiking and camping, which I’ve really enjoyed. I found if I get a better camping mattress and make sure I’m medicated properly, I can still backpack — which I like to do.

What made you want to share your story?

There’s a lack of understanding about what it’s like to live with a chronic illness. We have a lot going on. Also, people with chronic illnesses have full-time jobs and hobbies and lives — they are so much more than their health condition.

We should also have grace and understanding towards others — everyone’s situation is different. Illness, in itself, is subjective. My level of pain and discomfort is nowhere near someone else’s, but it’s also the worst I’ve ever known. Taking the time to understand that is important.

What It Feels Like: Destroying a thyroid gland to treat Graves’ disease

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