Last night I discovered what happens when you combine Graves’ disease with hay fever. The results weren’t pretty, and I rather wished I hadn’t looked in the mirror at around 10pm. The offending eye is now back where it belongs, leaving me with something akin to a hangover. But the experience was a reminder of the more freakish side of Graves’. It also made me wonder why I hadn’t written about it yet.
I’ve been writing this blog for nearly two years now, without looking my illness squarely in the eye. (The same could be said about Brexit.) Some things change your life so utterly and irrevocably that it’s hard to get the perspective you need to write smoothly and fluently in whole sentences and paragraphs.
I’ve struggled to write anything beyond brief cross-references and the odd tweet, and anything I’ve attempted has emerged as a series of staccato phrases. So let’s see how it goes …
Weight loss (wonderful!)
Over-heating (female, mid-50s, must be the menopause)
Watering eyes (side-effect of reading glasses?)
Shaking hands (was I always this nervous?)
Neck swelling (am I imagining that?)
These were my symptoms of Graves’ disease. By the end of 2015 I’d been at least half-aware of most of them for about 3 years – I could date the weight loss to moving house in 2012. But they were all so disparate, and individually easy to dismiss. Nor had I had time to think about health as I hurtled through my daily round of commuting, back-to-back meetings and visits to my 20 offices around the UK.
What took me to the out-of-hours GP on Sunday, 15th November 2015, was ostensibly “stress”. Work had been more than usually draining, and the Paris terror attacks on the evening of Friday 13th had knocked me strangely off-kilter. The unfamiliar GP looked at me curiously, felt my racing pulse, and asked me to follow his pen with my eyes. He felt my neck, then quelled my rising panic with the news that he suspected something I’d never heard of: Graves’ disease. “Not as grave as it sounds.”
Not grave, but serious: Graves’ is an autoimmune disease leading to an overactive thyroid, which speeds up the metabolism. This abnormal pace is the common thread linking most of the symptoms I’d noticed. (Most but not all: Thyroid Eye Disease, with its protruding – hence dry and watering – eyes is more mysterious.) He explained the cardiovascular impacts – hence the racing pulse and the need for a short-term fix of beta-blockers.
My stress – or “emotional lability”, as it’s known in this context – was also explained by the illness. It’s often the symptom that triggers diagnosis, and may explain why it can be confused with mental illness. (The fact that it’s an autoimmune disease, and is much more common in women than men, may also play a part here, given that such conditions are frequently overlooked or misdiagnosed.)
A blood test would soon confirm the GP’s cute observation. In the meantime I spent every free moment researching this strange new disease with its funereal name. I tried to make light of it, to convince myself it was something that wouldn’t interfere too much with my life.
I took what I thought would be a couple of weeks of sick leave, to recover from the effects of living as though on speed for 3 years. As I was still awaiting further tests to confirm medical treatment, I spent Christmas trying out various herbal remedies suggested by American and German self-help books: 20 drops of tincture of Bugleweed/Kriechender Günsel a day, with unlimited amounts of lemon-balm tea/Melissentee. (The bugleweed was fiddly as well as ineffective, but I still drink lemon-balm tea every day for its pleasant taste and soothing properties.)
I made it back to the office for just a day after Christmas. Blood tests showed I had over two-and-a-half times the normal level of thyroxine, so it was hardly surprising that I was a wreck the day after.
January 2016. (This is where the phrases become staccato again if I’m not careful.) I started medication. Work stress filtered through even though I was off sick. I got palpitations. My dad died.
I’ve recently discussed the impact of the medication with my super-supportive husband, who observed me during this period rather as he now observes moths. It made me realise that you don’t notice the speed of your own metabolism – rather like we don’t notice the speed of the earth moving through space – because your inner observer is moving at the same pace. But to him it seemed as though my speed was suddenly turned down, like an old-fashioned record-player, from 78rpm, through 45, to 33.
The bit I still struggle to process – and to write about – is the interaction with work. It’s still raw, two and a half years later, and coherent words won’t flow, even in staccato phrases. Maybe they will eventually. For now, I’ll focus on the contrast with my experience in the 1990s, in my late 30s, when I had severe gynaecological problems culminating in a hysterectomy. While it was hard to discuss the details with my male bosses, they treated me throughout with kindness, tact, and humanity. I went back to work feeling even more positive and valued than I had before.
Perhaps, at that more junior stage in my career, there were more protective layers between me and the harsh climate at the very top of the organisation. Or perhaps I just had the good fortune to encounter a couple of unusually decent, humane men.
Other things had changed too. For some years, my job had involved a balancing-act – between the professional excellence of my bit of the business, and the management crap (there is no other word) that constantly rained down on us as part of a much larger organisation. Once my health was compromised, the balance shifted.
So, 20 years on, things worked out differently, and I resigned.
People sometimes ask if I’m “better”, and I probably look bemused (as I do if they ask if I’m “retired”). There’s no glib answer, and I hesitate to tell them more than they ever wanted to know about a disease they’ve never heard of.
My thyroid is no longer hyperactive, thanks to medication, and the symptoms of hyperactivity have receded or reversed. It hasn’t (yet) been over-medicated into hypoactivity. Nor has it (yet) been removed, or zapped with radioactive iodine. (And, having become suddenly aware of my thyroid, I’ve grown rather fond of it.)
My antibody count is down, to about half what it was when it was first counted. It’s been declining steadily since I started the medication (which in itself is mysterious, as the medication tamps down the production of thyroid hormone but doesn’t directly act on the antibodies – presumably there are feedback loops). But at this rate, it will be another 18 months before they are at “normal” levels.
My eyes are stable, or even a little better, as long as I avoid walking in fields of wheat in hay fever season. (Again this is rather mysterious as the medication acts on the thyroid not the eyes – more feedback loops?)
But the main impact on daily life is that my batteries are no longer reliable. I can do most of what I want to do, but not for as long or as often as I used to. I have to pace myself, and I’m gradually learning to ration my energy. That can be hard to adjust to, and hard to explain, but perhaps the act of writing it down will help.
[PS: Graves’ disease is much more common in cats than humans, so it’s worth being aware of if you’re a cat-owner.]
2 thoughts on “Delving into Graves’”
Sending love. Somehow we need a wider understanding that some diseases and conditions are worse than a cancer diagnosis which is always met with support. In comparison with you after 9 months of (utterly awful) treatment 8 years ago I am well and cancer free (at least for now). Still I always believe that the right path opens up when things get difficult. I hope you enjoy (as much as you are able) this new but unexpected path. I’m on my new path 1 year down and starting to see ahead rather than sitting by the roadside looking back. ❤️
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Thanks Rebecca – what a lovely comment! I don’t think it’s worse than a cancer diagnosis, but you’re right that it’s met with a different response. I’m glad to hear you’re in good health now. I’m certainly enjoying my new-found freedom from civil service constraints!