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what it feels like

graves' disease: what it feels like

"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.

by emma jones

mar 1 2022

6 minute read

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what it feels like: destroying a thyroid gland to treat graves' disease

jenika hamilton lived in pain for eight months before getting a diagnosis of graves' disease. supplied

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

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.

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.

readers looking for more information can check out the thyroid foundation of canada and the american thyroid association.

what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. have a story to tell? email info@healthing.ca .

emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on twitter @jonesyjourn

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graves' disease: what it feels like

"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.

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

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