Simon’s Graves’ Disease
Vanity of vanities, saith the Preacher, vanity of vanities; all is. 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
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 embarassing
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 and 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 predating
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
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
geneorus portions, and seconds, and thirds. The diarrhea 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
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
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 outpatients 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
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
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.