Graves Disease: Thyroid treatment is failing us all Part 2

Previously on Hormona… My family has staged an intervention because I am not well. But my Graves disease diagnosis is just around the corner, so things must start getting better, right? Strap in gang, it’s about to get bumpy…

Two people in one brain

If my recollections of the time before my Graves’ disease diagnosis are a little hazy, there’s a good reason for that. And my family wasn’t just randomly guilting me into seeing a healthcare type with their impromptu intervention.

Graves’ disease and Bipolarism actually share some antibodies, and that’s not all they have in common. I’m in no way saying that I have any idea what it’s like to live with Bipolarism, but I do know what it’s like to regularly ride an emotional and memory rollercoaster.

For instance, memories I made when I was super sick are really hard for me to access when I’m not. Which leads to weirdly hormone-dependent black holes in my recollection. But the reverse is also true. When I was sick, or these days when my meds are off, I have trouble accessing memories I made BGD — Before Graves’ Disease. In fact, memories suddenly appearing or disappearing is a good indicator that something’s wrong.

That’s not the worst part, though, although it does lead to some very awkward conversations. No, the worst part is something I like to call the Supernatural effect. Now, if you’re not a fan, allow me to explain. And if you are, bear with us. Not everyone gets Dean Winchester the way we do.

Supernatural is a now-defunct show that dealt with, well, supernatural stuff. And in the Supesverse, demons can inhabit the brains of humans. It’s possession but with added hiding-in-plain-sight benefits. Humans lucky enough to survive their possession describe feeling as though they were trapped in a corner of their mind, mostly conscious, but unable to control their body, or what comes out of their mouths.

Dollars to donuts one of those writers had Graves’. Because that’s exactly what it’s like.

Graves’ disease: Accidental diagnosis

So, following that successful intervention, off I went to the doctor. After several appointments and tests, I was assured that Bipolarism wasn’t in my future, but that’s all they knew. During that same appointment, though, the doctor noticed a swelling at the base of my throat. And just like that, all was about to be revealed.

A flurry of tests and an emergency Endocrinologist appointment later, I was the newest — and one of the youngest — Graves’ disease patients on the block. How had I not noticed the swollen gland? Because, dear readers, it had always been there.

To begin with, my Thyroid treatment progressed fairly quickly as my rushed blood tests had caused some concern. Off the charts was one description, after which another physician queried how I was still alive, so that was fun.

Although with a resting pulse rate of 125bpm, I can’t say that I blame them. And whether it was finally knowing what was wrong that did it, I’m not sure, but at that point, my physical symptoms began to accelerate at a terrifying speed.

Battling my body

Debilitating doesn’t even begin to describe it. Twitching, shaking, cramps in places I didn’t know I had muscles, heartburn that felt as though I was melting from the inside out, vomiting a dozen times a day, crippling nausea, insomnia that meant three hours sleep was a great night’s rest, holding glasses so tight they shatter one minute, and dropping cups because I can’t hold onto them the next.

Then there’s the fainting, the unbelievable vertigo, the palpitations, limbs that randomly stop working, balance that decides you’re the wrong way up, hands that burn, the weight loss, the weight gain, the sudden allergies to everything ever, and body temperature that never makes any sense. T-shirts in November, anyone? For the young ‘uns among us, it used to be cold in November.

And the exhaustion. On bad days, I couldn’t make it the six feet from my bedroom to the bathroom to vomit unless I crawled; on a good day, a ten-minute walk to the doctor took an hour. During that period, my body turned on me in ways that even now, I can’t really believe. It was hellish.

Graves’ disease treatment: Take one

To begin with, my Thyroid treatment involved a mixture of Carbimazole to attempt to shock my gland back into good behavior, and Beta Blockers so I wouldn’t have a heart attack. When that had no effect whatsoever, it became clear that surgery was my best option.

The several hours I spent under anesthetic remain the best sleep I have ever had. I enjoyed it so much, if fact, they had some trouble bringing me round. I never got to thank my nurse, Olivia, and the rest of the team, for totally getting it and not panicking — I just needed to sleep.

On rousing, I was told that I’d been on the receiving end of a partial Thyroidectomy, as they’d left my Parathyroid glands intact, which at the time I thought nothing of. Also, I was stopped from seeing the thing that had stolen years of my life, because, “That’s gross, Emma.” That, sadly, represented the pinnacle of my care. Post-surgery, Thyroid treatment is very different indeed.

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