Should I feel special?

US studies suggest that Graves Disease affects just 0.25% of the population. So thats 99.75% of the population then who have no idea what I’m on about. I’ve certainly found that most people give me a blank stare if I mention it and sympathy is fairly thin on the ground. And not that I’m seeking it but it would be something of a relevation if someone actually expressed concern or asked how I was feeling. I come from a family with a few genetic quirks so in actuality this disease is ‘not that big a deal’ in the context of some of the other things my family has withstood. But still….

In the beginning…

I was formally diagnosed with Graves Disease on the 30th of April 2008. It was a shocker of a week as just the day before we’d buried my great aunt who had finally been released from the prison of dementia at the age of 96. Certainly, throughout the pathway to diagnosis there were more than a few moments when I thought perhaps I really had lost my own mind.

I’d been symptomatic for some time but despite numerous trips to the doctor had not been diagnosed with anything in particular. She’d ordered a holter monitor test for my heart palpitations…’no conclusion’. For my ‘panic attacks and anxiety’ she prescribed anti-anxiety meds and suggested I see a therapist. For my chronic insomnia, she recommended a warm bath late at night (not being keen to prescribe sleeping meds). For my ongoing joint and muscle pain she referred me to a sports physician who recommended pilates and prescribed Voltaren. We discussed having a tyhroid test but as my TSH levels had been on the high side of good during a routine blood test 18 months prior, she contended that any problem with the thryoid was unlikely. Given how often I was presenting at her surgery with random, seemingly unconnected ailments, I was pretty sure there was by now a note attached to my file in big red letters, “Warning: hypochondriac!”. In fact, if my mother had not needed emergency medical intervention earlier this year, I probably would still be complaining of being unwell, and no closer to knowing why.

Long story short…she was found to have a massively enlarged thryoid; a goiter lying retro-sternal, pushing on her trachea and obstructing her breathing. It was still working but she was well on her way to hypothyroid…so it had to come out! Soon after, I learned that most of the women on my mother’s side of the family had also had thryoid issues.

A week or so later, I was back at the doctor’s office and this time I requested a full work up of my thryoid pathology. Blood was taken, blood work up came back. A few days later I came out of a meeting and began checking my phone messages and sure enough, there was a call from my GP. “There’s good and bad news” her recorded voice said. “The good news is, you’re not a hypochondriac. The bad news is, there’s definitely some problems with the results and most likely it’s something called Graves Disease…but we need to do more tests and I’ve made an appointment for you to have an ultrasound and go see an endocrinologist.” And then I went back into meetings and tried not to think about the implications of her message, not knowing what Graves Disease was, and hoping it was that and not anything worse.