Simon’s Graves’ Disease
Vanity of vanities, saith the Preacher, vanity of vanities; all is vanity. Ecclesiastes; 1:2
New sufferers of Graves’ disease I meet through patient support groups often want to know my history and experiences with the disease, this page is for them. If you came via another route it probably looks like self indulgent vanity – perhaps it is.
This page discusses my history with Graves’ disease and is light on other biographical detail, including my mothers more serious autoimmune complaints, and the other cases of Graves’ disease and autoimmune disease in my mothers family. Even if it is the truth, it isn’t the whole truth, or the best or the worst of the truth, but just an outline.
In my case the disease first presented itself as migraine like headaches at the age of 17. The first headache I remember was when I was playing in a chess match one Saturday, fortunately my opponent had defaulted.
These headaches got steadily more frequent. As a sixth form student my teachers were becoming concerned, I was often to be seen cradling my head in my hands rather than adopting a more attentive posture. The doctors were perplexed, and prescribed paracodeine, which numbed the pain somewhat whilst I slept the headaches off.
In my first year of University the headaches continued, they were mainly a problem following exercise, and I eventually gave up my lunchtime swimming. The University doctor diagnosed “stress”, and kept the paracodeine supplied.
After 3 years I was often awake for 36 hours at a stretch followed by crashing out with a headache, I was getting headaches three or four times a week and taking pain killers and trying to sleep them off. I was also washing or showering twice a day to keep the sweat at bay. I started developing minor related problems, an embarrassing rash, put down by the doctor to poor personal hygiene, almost certainly due to the perpetual sweating.
I’d gained a reputation for eating anything an everything, I demolished additional packets of biscuits several times daily, and never gained an ounce. It became something of a family joke.
My work was suffering, looking back on my written work from this period the spelling and grammar had deteriorated to a level pre-dating secondary school (fortunately it was a Maths degree), one of my lecturers asked if I was dyslexic, another raised concerns that I wasn’t progressing as they expected someone with my qualifications to do.
Curiously my social life bloomed, being awake all through the night as a student meant parties, and I needed a couple of pints in me just to stop me shaking.
The doctors still told me I had stress, and of course this was my final year – so it was worse stress. I just concluded that they would never take me seriously, and that I was going to die young of something
Losing Weight at Christmas
November 1990, after I graduated (just), I started to lose weight. I was still eating everything in sight, and the weight loss was moderate.
Christmas that year I stayed at my girlfriends parents. I lost a half a stone (7 pounds) in weight Christmas week, despite the very generous portions, an seconds, and thirds. The diarrhoea was now a major symptom, and the sweating was continuous.
Realising I was in a serious way, I went to the doctor’s local to my girlfriend’s parents. The half mile downhill walk left me weak, and I had to stop halfway, and get a lift back after the appointment.
I saw yet another doctor, who still failed to make the diagnosis, and prescribed a course of antibiotics?!
A month later, three stone (42 pound) lighter than I started out, I saw my original family GP who I had previously seen as a kid for inoculations. He finally ordered a thyroid function test, although even he still suspected IBS. I fainted for the first and only time in my life, in front of my sister who worked as a receptionist at the surgery, whilst waiting to make an appointment to get the blood test results.
Within 3 days of starting the antithyroid drug Carbimazole, the headaches were gone, and I felt alive again. I was stunned at how good not being poisoned by your thyroid (thyrotoxicosis) felt.
Carbimazole – NHS drug of choice
The GP who finally ordered the thyroid function tests, and diagnosed me, also proved adept at managing the antithyroid drug treatment. He prescribed 45mg of Carbimazole once daily initially, but this was reduced to a maintenance dose of 15mg Carbimazole within a few weeks, with a brief trial of 10mg which was too little.
Shortly after diagnosis I moved to the Bracknell area to work for the UK Meteorological Office. I was fairly stable on 15mg daily of Carbimazole, and managed exclusively by my GP. Moving house later I switched GP, on my first appointment I mentioned the words “Graves’ disease”, and he immediately referred me as an outpatient to the local hospital, later I was to learn that this is the NHS recommended procedure, and that I should probably have been referred on diagnosis (or earlier would have been good as well).
The consultant I saw was Dr Scott at Heatherwood hospital, his care, and his teams rigorous approach I took to be the normal for managing Graves’ disease. He made sure to see me on every visit, even if my appointment was with a junior member of his team, he explained the origin and causes of my disease (in what I thought as more detail, and definitely more repetition than I needed). Each doctor on the team would do the same tests, or have the nurses do them, blood pressure, reflexes, tremor, palpitation of goitre (gentle feeling of the goitre to establish size and texture – some don’t recommend it as a procedure as it has led to thyroid storm, however his team were experienced, and very gentle).
Surgery – Subtotal Thyroidectomy
Dr Scott, after much deliberation, and patience watching, recommended a subtotal thyroidectomy, as it was clear I was not likely to achieve remission on the protocol in use. Looking back I’m not sure if this was the right move, but Doctor Scott had weight it carefully, and I had (and still have) great confidence in his judgement.
Surgery had me nervous. Barring outpatient appointments, and visiting, my only previous experience of hospitals was a broken collar bone as a small child. Only later did I learn that the mortality rate in thyroidectomy is now vanishingly low. Surgery was a completely pain free experience for me, which was a surprise, especially as the anaesthetist had gone to great lengths to explain self administered morphine as a pain killer. The only discomfort at all was having two neck drains removed, which were left in to keep the area free of fluids, and even that was more just peculiar, than painful.
The anaesthetic did knock me for six, and it was over a week before I felt completely recovered from it. The doctor wanted two weeks off, but I was bored sitting around, and computer work isn’t exactly strenuous.
Following my surgery, I had the usual follow-up, the biopsy was consistent with Graves’ disease, the surgeon explained he had removed the bulk (seven eighths was his description) of my thyroid gland.
Thyroid tests suggested that I was borderline hypothyroid, however I exhibited no significant symptoms, and so was not put on any medication. I have since wondered if I would have been better advised to have replacement hormone anyway, just to keep the numbers right, as when I later learnt to recognise hypothyroid symptoms, I realised I was having some minor symptoms, and to keep the thyroid remains suppressed.
I was drug free, in good health, and able to get fit again. Seemed to me like I was cured, and I never gave Graves’ disease a second thought.
I was drug free for six years, but then started having “hot flushes”, where my shirt would become completely drenched for no obvious reason, although stress (even very mild stresses of everyday life) would often trigger it. About 10% of Graves’ patience relapse in the 10 years after the type of surgery I had, so despite 6 years drug free and healthy my surgery is technically classified as a failure. The headaches returned, and I’ve since become intolerant to alcohol (which I’m sure is related to the hypothyroid episode).
Drug treatment proved much harder the second time around, and I eventually switched GP’s as I realized my current GP was out of her depth, and keeping me hypothyroid by over reliance on TSH test results. Hypothyroid was interesting, and the experience was useful for helping me identify symptoms, but I didn’t need to spend vast chunks of 2001 hypothyroid. For me the worst symptom was depression, I’ve never really experienced any serious depression before, but this was unlike any mood swings, or grief I’d had before, best described as a lack of motivation to do anything.
Switching GP’s helped, as I was no longer over-treated. I switched from Carbimazole to PTU a few months later due to some weird digestive symptoms, although I now suspect I may have been going slightly hypothyroid again.
Block and Replace
The balance achieved with PTU was still not perfect, I still had several headache a month, sometimes more, and my sleep patterns remain erratic, so I opted for a change. The remaining avenue short of trying something more drastic, like a second surgery, is “block and replace”. I now take 40mg Carbimazole, and 150mcg Thyroxine daily, it has resulted in more stable blood test results than previously, but I can’t say I feel a huge amount better.
The doctors are keen for me to take more exercise, but exertion often triggers extra hyperthyroid symptoms, so I am building up slowly. Before relapse I would jog every morning before working from home bang on 09:00. These days I tend to get up when the need arises, and the only thing I’m likely to try before work is breakfast and a shower.
Looking back Graves’ disease, and the other autoimmune diseases in my family, have shaped my life, despite being free from the worst symptoms, such as Thyroid Eye Disease.
The failure to diagnose had a bad effect on my University career, I had always intended to go into scientific research, but in my discipline you need a first class degree. The relapse hit just before the start of a demanding but lucrative contract, which I had to abandon early, and the mistreatment made working in 2001 practically impossible. It also takes it’s toll on relationships, who wants friend who are moody, or sweaty, or ill much of the time? Well some people do.
Although my initial treatment was quite successful, and competent, my experience since have led me to learn a lot about Graves’ disease, and to recognise that the standards of care provided on the NHS, and elsewhere, for this disease are very variable.