Graves’ Disease Diagnosis: My Journey
Imagine this: You’re living your life, minding your business, when suddenly your body decides to stage a hostile takeover. Your heart’s racing like it’s training for a marathon you didn’t sign up for, your hands are shakier than your Wi-Fi signal, and your things feel… weird. Welcome to the thrilling and utterly unexpected rollercoaster that is my Graves’ disease diagnosis, where my thyroid has become the main character in my newest medical drama.
And oh, what a drama it is!
A Super-Quick Introduction to Graves’ Disease
Let’s break Graves’ disease down to the basics, shall we? I’ll bullet point what I know:
- Autoimmune disease
- Lifelong/chronic
- Can be forced into remission…
- But it doesn’t have a “cure”
- It’s very unpleasant
- My immune system is attacking my thyroid
- I have hyperthyroidism (overactive)
- It’s affecting my heart (heart rate + arrhythmia)
- It’s not responding to treatment (yet)
Want some links to real science stuff? Here’s a few that I’ve found useful, just in case you’re interested:
Graves’ Disease Diagnosis: My Journey
Getting to a Graves’ diease diagnosis is a little like solving a mystery where the villain (your immune system) leaves behind just enough clues to keep you guessing but not enough to figure it out. The symptoms are super vague, and it’s easy to attribute basically all of them to something else entirely…
Let’s go right back to the beginning of my story.
Pre-Graves’ Disease Diagnosis
Two years ago (Dec 2022,) I became a vegetarian. It was one of those things that I’d thought about doing for pretty much my entire adult life, but I never thought I’d actually do it. Over the years, though, one bad takeout meal after another slowly turned me into more of an herbivore than an omnivore, so I figured, there was no better time.
Hey, if I’d managed to quit smoking, drinking, and basically everything else that was fun, surely quitting meat couldn’t be that much of a rough challenge.
Well, it was rough for a while. Very rough. I tried to give blood, only to find out that I was anaemic. My whole body constantly trembled, no matter the temperature. My head felt thick, like someone had shoved a whole bunch of cotton wool in there. Low energy. High fatigue. Mood swings all month long, and not just around that time of the month. Night sweats. Nightmares. Heightened anxiety. Plummeting moods. Zero ability to tolerate bullshit.
It was shitter than shit. Absolutely abominable.
I thought the vague symptoms and my new vegetarianism project were linked. I’d done some research, and I’d seen more than one person complain of feeling like utter shit following the switch from meat-eating to veggie life. I decided to start eating healthier, exercising more, and take a few supplements, not quite yet ready to throw in the herbivore towel.
I did head to my GP, though, where I had some blood tests done. No anaemia. (Huh?) Vitamin D deficiency. (Again.) Nothing else to report.
Great, vegetarianism is trying to kill me.
The Colonoscopy
If you’ve been reading the blog for a while, you’ll likely know that I’ve previously had some cervical and bowel issues. Pre-cancerous polyps, to be exact. A few years of pretty severe depression meant that I’d neglected all of my medical stuff, so, about eight years too late (starting Dec 2023,) I chased it all up.
Part of the pre-colonoscopy ritual (alongside shitting yourself for basically 24 hours straight,) is a blood test – a full blood panel that finally revealed some underlying issues.
“Yeah, you’ve got hyperthyroidism. Your prescription should be ready to pick up from your local pharmacy,” the receptionist said. “You’ve also got a referral for a radioactive iodine uptake test.”
A fuckin’ what now?
The radioactive iodine uptake test
I later discovered that The Test required an injection of radioactive iodine, then a scan, to determine how much iodine my thyroid absorbed, and how quickly.
Or something like that.
I went along for the scan with mother, stopping my medication (Carbimazole) a few days before, as directed in the letter they’d sent out. They didn’t give me results (or even a whiff of them) at the actual scan appointment; instead, I got the obligatory, “Wait for seven days, then call your GP.”
Three weeks later, I finally remembered to call my GP and get the results. (Brain fog and memory issues, remember.)
The consultation
I met with a consultation in the early part of September 2024, a month later than the pre-arranged, then rescheduled original appointment.
“It looks to me that you have Graves’ Disease,” she said, as I twiddled my thumbs and tried hard to concentrate. I’d gone to that appointment alone. I fucking wished I hadn’t.
We chatted for a bit, discussing symptoms and this-and-that, and she increased my Carbimazole prescription from 5mg twice daily to 20mg once daily.
“It isn’t responding to treatment, so we might need to look at surgery. You can only take this medication for around two years,” was her parting shot.
Surgery? Nope. Dislike.
On my throat?! Nah. I’ve got throat trauma. I was married to a strangler. Shivers.
The letter
A couple of weeks after my appointment with the consultant, I got a letter that confirmed Graves’ Disease.
In short:
- Increased uptake 10%
- FT4 59pmol/L
- FT3 22pmol/L
“Considering her goitre, she may require a definitive action in due course.”
Gulp.
The Side Quest
I’ve got a lump that’s not attached to my thyroid (maybe,) but it’s in the general vicinity. My GP explicitly stated that it didn’t look like cancer and was probably a nodule. My consultant, on the other hand, said it would be biopsied during the probably inevitable throat surgery.
Biopsied?
I thought it didn’t look like cancer?
I’m furious about this, to be honest. I’ve just got the all-clear from cervical pre-cancerous cells (times like, five or something daft at this point) and finally got the sought after HPV negative result, and I’ve had my recent precancerous bowel polyp cut out (second time,) and now you’re telling me that I might have a bit of the ol’ thyroid cancer?
Stop it.
I’m thirty-fucking-eight. Three cancer scares at this age, is ridiculous. I’m not having it.
NO.
Anyway, the medical folks don’t seem to be that concerned about it, so I’m not concerned about it. It’s not like this is my first rodeo, eh? Between the pre-cancerous bowel and cervical cancer cells, I’m a professional at this now.
The next instalment of the Graves’ Disease chapter is: My Super Vague Symptoms. Coming soon.
Thanks so much for reading my blog today! 🖤
