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

Graves Disease

“I was given a liquid that was basically a cup of water. It tasted like nothing. [The healthcare workers who were wearing] hazmat suits told me to exit the hospital as quickly as possible,” says Jenika Hamilton.

With Graves’ disease , the immune system attacks the thyroid gland, causing it to produce too many thyroid hormones. This can lead to a rapid heartbeat, trouble sleeping, nervousness, irritability and the development of a goitre, which is an enlarged thyroid gland. If left untreated, these symptoms may develop into osteoporosis, blood clots, fertility issues, stroke or heart failure. Treatment includes reducing the amount of hormones produced by the thyroid gland by medication, ablation (destruction of the thyroid gland) or surgical removal of the thyroid.

Graves’ disease is estimated to affect two to three per cent of the population, and is approximately five to ten times more common in women than men.

Vancouver-based Jenika Hamilton, 25, spoke with Healthing about learning to advocate for herself, living without a thyroid and what brings her joy.

This interview has been edited for length and clarity.

You mentioned your story starts when you began to experience chronic pain.

It’s actually kind of funny. The only clear memory I have is having a coughing fit when I was 16, and I could barely walk [after]. My doctor told me to stretch and it would go away, but it didn’t. I could barely stretch my leg out in front of me and didn’t know what was going on.

I was in a choir at the time, and standing for long periods of time was difficult. But I was also running with my friends and they were confused as to why I could run, but couldn’t stand. What they didn’t know is that after I ran, I was bed-bound for two days. I didn’t look injured, so they thought I was just faking it. Eventually, I saw a physiotherapist.

You were in pain for months.

Yes, I injured myself in January, and it wasn’t until July or August that I actually saw someone and got it treated. I was taking Robaxacet [a back pain reliever] to hopefully deal with the pain, [but] it didn’t even come close.

I felt pretty desperate after a while. I was begging my parents to get me crutches because it was so painful. It felt like no one really took me seriously.

So you reached out to a physiotherapist?

I went back to the doctor and I said that the pain wasn’t going away. I was referred to a physiotherapist in the area and they did amazing work; I was a fair bit better by the end of treatment, but at that point, the pain had become chronic.

To have your pain not taken seriously was a huge learning curve that influenced all of my future encounters with every doctor. It was eye-opening that, as much as doctors have your best interests, they also have their own biases. It’s important that you counter those biases and say No, I think this is pretty serious and provide details — not just [about] what’s happening in the moment, but also what has been happening over time, and how things are changing.

What led to your Graves’ disease diagnosis?

When I was diagnosed with Graves’ disease, I was in my second year of rowing in university. I was training a lot, about 10 times a week because I had plans to go to a more competitive university. Meanwhile, I was getting sicker and sicker.

I worked at a clinic that had a naturopath. [I mentioned that] I felt really fatigued all the time and I didn’t really know why. [She told me to] have my TSH (thyroid- stimulating hormone) and iron levels checked. The TSH levels were low, so I was referred to an endocrinologist.

 What brings Jenika Hamilton joy? Her cattle dog, Trash Panda, and climbing. SUPPLIED

What brings Jenika Hamilton joy? Her cattle dog, Trash Panda, and climbing. SUPPLIED

After the first set of tests, it was found that I didn’t have the TSH receptor antibodies to confirm a Graves’ diagnosis [even though I had the symptoms]. Because of that, my first endocrinologist [didn’t think] that I had Graves’ disease. Meanwhile, it was basically wreaking havoc. I was feeling really unwell — my heart rate was getting really high, which is really difficult for rowing.

Is there a treatment for Graves’?

[I was on] a hormone blocker; it doesn’t treat the illness, it just suppresses the hormones in your body. I was also on a beta blocker, once my diagnosis was confirmed. Eventually, after about eight months, we decided to just burn it out: I had an radioiodine ablation.

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

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