Simon’s Graves’ Disease
Introduction
Vanity of vanities, saith the Preacher, vanity of vanities; all is
. Ecclesiastes; 1:2
vanity
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.
The Beginning
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 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
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
undiagnosed.
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
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 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.
Drug Free
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.
Relapse
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.
Thanks Simon, i was just diagnosed two weeks ago, I am 42, my whole life has been up and down, Hysterectomy at 26, depression from (finding out about sexual abuse when i was young), weight gain and massive stress in my life, i feel like crap 24/7. i have noticed and i am not sure its stress but my throat is in constant pain, like a knife twisting, have told the doc but he hasnt said anything. I am on carbimazol 3 tablets a day. My half sister has had thyroid problems since she was young and now has just been diagnosed with Non Hodgkin’s Lymphoma. Hope i dont get that. From reading responces to your blog i didnt know there was so much involved with this disease, i think i better do more reading. Any recommendations.
PJ, wow, finally someone who understands. Do you know what your athyroid antibodies are like? Mine are very high even though my tsh, t’s and free’s are in normal range with methimazole. I have been on a gluten free diet to help with migraines……. And maybe that is helping my labs because they decreased my meds but now my vision and headaches are worse and i am thinking its the antibodies causing the vision issues. Also, i tested negative for gluten inolerance.
I should also add i tested positive for a severe allergy to molds, including the common aspergillus black mold. My vision symptoms started in 2006, very mildly after being under stress and exposed to mold. I think they got worse after being in old apartments. My son is always sick too.
Would love to talk more with you. Do you remember wheb your vision symptoms started and what was going on with labs.
My email is skimordiegirl@yahoo.com
I think its a migraine varient from the antibodies… But i am not sure.
I hope to talk to you soon.
Candi
PJ, I thought I left a reply for you, I’d love to talk to you more about our vision symptoms on top of the graves. My email is skimordiegirl@yahoo.com. Simon, I hope you don’t mind me posting my email. I have rarely come across other graves patients with my same vision symptoms.
I hope to talk to you soon PJ.
Candi
hello Simon, You have inspired me to share my Graves story!
I gave birth to my daughter in 2007 and 6 months later I began to feel “not right” which was at the time the only way I could explain it! I started having really painful legs, headaches and felt quite panicky at times. When I went to the doctors she said it was because I had just had a baby and I would probably be ok in a few weeks and to get out more :0/
So I tried to get out more but found myself almost having a panic attack just trying to cross a road! (which is definately not like me!). I then found myself opting for luke warm baths as opposed to the hot baths I usually had and then running the cold water onto my toes because I was too hot (in December!). Eventually I developed insomnia and horrible heart palpatations and after a bit of research on the internet I was convinced it was graves.
I asked my doctor for a thyroid function blood test who relunctantly agreed (this was the 4th time I had been and she was convinced I had post natal depression!) Two days later the doctor phoned, apologised and asked me to come into the surgery immediately to start a course of carbimazole.
I was referred to a wonderful endocrinologist in Leeds and had block replacement therapy and two yrs later the Graves finally went into remission.
That was two years ago…I am now at uni full time, a single mum (the hormonal mood swings that accompany Graves didn’t do much for my marriage) and over the past two weeks I have developed insomnia, lost 9lbs, heart palpatations and hyperactivity (cross trainer at 4 in the morning :-/)…..The Graves has returned :0(((
My doctor prescribed beta blockers today and faxed the endocrinolgy team at Leeds for an urgent appointment – so it starts again – I thought I might have escaped this condition apparently I haven’t boooo!!
Lucy x
hi simon
i was diagnosed 2 days ago with graves disease. my story is not quite as rough as yours. i began with symptoms earlier this year in april/may. most of the symptoms were GI signs. i was then referred as my doctor was at a loss to why i was experiencing these symptoms, bearing in mind in june all my bloods including thyroid came back as normal. i was then given another blood test last week as a pre-procedure routine blood tests before being sent for a colonoscope (yuk!!) it showed up that i was hyperthyroid!!! at last someone had found something!!! i have now been referred to an endocrinologist and have now started on carbimazole which hasnt been easy so far as had quite a few of the side effects already but at least i know what i am dealing with now. my consultant definately thinks it is genetic as my mum has ceoliac disease and her brother has graves and hashimotos disease !! all sites like these are giving me hope that this can be lived with thank you so much simon
I’ve recently been diagnosed with graves’ disease. Ive been driving my husband mad -he bears the brunt of my bad moods and irritability. I’ve been prescribed carbimazole but am wondering if anyone has tried any alternative treatments. I’ve had a look on the internet for some but they are all American websites!
Americans work the same way as the rest of us, I think. I’ve tried one of the herbal treatment with no obvious effect. Aside from the herbal treatments, the only other alternatives I’ve seen discussed much are energy treatments, which are clearly just so much hocus pocus.
Why are you unhappy with the Carbimazole? It is not uncommon for doctors to mishandle treatment with Carbimazole, giving patients too much. Most of the problems we see with Carbimazole on the discussion forums are due to too much. A few people seem to get hives at any dose likely to be effective. I’ve seen a few rare complaints that it didn’t work for them, but that is pretty unusual.
Methimazole is similar to Carbimazole (indeed Carbimazole is metabolised into Methimazole).
I tried PTU, it seemed to work if you take it often enough, and tastes disgusting.
I tried surgery.
I’ve skipped RAI, as I don’t want to risk the side effect of increased TED.
I was diagnosed with Graves disease nearly three years ago, after suffering years of unexplainable anxiety attacks, heart palpitations, hot/cold sweats, leg pain, headaches and diarrhea. After pushing my doctor to conduct various tests, I was diagnosed by an endocrinologist as having Graves disease. After receiving the diagnosis, I immediately changed my diet ( in a dramatic way)- after much research. I cut out virtually all white sugar ( which I constantly craved), replaced it with honey, also removed bleached flour ( replaced with whole wheat), removed all aspartame and MSG products lastly, switched to sea salt ( iodine free), and reduced the amount I use. I followed this up by, eating loads of raw veggies, replaced my red meat with fish, bought organic as much as possible, included large amounts of raw spinach in my diet ( at least 3x per week). Within 6 months my Graves became a-systematic, essentially I was able to get off my medication, and avoid surgery which was pending before my diet/lifestyle changes. My diet was supplemented with B-complex, Essential fatty acids (EPA), Glandular extract and Calcium. I also took dramatic steps to reduce the stress in my life, including changing occupations. I struggle from relapses from time to time, but am able to manage them effectively with diet and relaxation methods ( massage etc). It should be noted that I am closely monitored by my doctor, via blood tests and so forth. It is very well possible that my methods will not work for everyone, as every case is different, but I felt it beneficial that I at least share my story just in case someone might find it helpful. Best of luck to everyone, and keep positive – things WILL get better.
I was diagnosed with Graves disease over a year ago. I am a very active person with a healthy, vegetarian diet so I have a healthy lifestyle. I am now showing signs of Graves eye disease and recently have been having many migraine headaches. I have always suffered from migraines since I was a child. Has anyone else found that the graves eye disease has triggered headaches? Thanks! Lorene
Hi have graves diease awaiting op for decompression my eyes are extremely dry as eyelids dont close any recommendations for ointments or cream to use i use lubri lube but would like othere suggestions hypromellows eye drops are not enough is very difficult to see any consultant is 3 months since i saw last one and now have to wait untill december my eyes are very dry and sore can anyone help my eyelids dont close hence dryness thanks for any info
Hi, stopped by as I have had Hyperthyroid and Graves and thought that was it but have been feeling increasingly strange of late and typed could you get Graves twice? Of course you have answered my question with an answer I hoped I would not get.
My story for anyone who wants to know. I was diagnosed with Hyperthyroid in September 2006. I had been complaining about my vision to the optician since November 05. By August 06 I was text book Hyper. Bulging eyes, tremors, light sensitive and permanently hot. As with so many people at first it was diagnosed as stress. I was put on Carbimazole and beta blockers but my thyroid refused to be regulated and if the dose of carbimazole was raised to much I started getting mental problems! Couldn’t think straight, paranoid. So I decided to have my thyroid out and did so in August 07. Looking back, I think if I had been diagnosed earlier and if I had had my thyroid removed earlier, I think I might have been able to save my sight from getting so bad.
I went on to have decompression surgery, two lots of squint surgery and three lots of lid surgery to lower the lids back over the eye. I have now had a respite of a few years but have recently had my thyroxine level lowered to 100 mg as I went hyperthyroid again. Now I can hear my heart beat in my ears again and one eye looks a little bulgy to me. Please God. Not again.
My sight has always been my biggest fear and because of the damage done by the disease I have to be careful about eye ulcers which I have had a few that have left scarring on the eye.
I would say to those of you at the beginning of this journey, things will improve but consider your options. I couldn’t understand that if you were thyroid-less you could still be affected.
Jan
I was diagnosed with Graves disease 20 months ago. Treated with carbimazole but changed to PTU as had a reaction to carbimazole. Have been in “normal” range for a while with PTU. My job over the last two months has been pretty stressful and I’ve been doing long hours including a longer commute for work. I feel like I may have relapsed. Is stress a trigger. I’ve not been ill or changed anything else in my life.
Just read the post about dry eyes from thyroid eye disease. I had this with my first flare up of Graves. Try 1000mg of flaxseed oil each day. It really helped me.
Hi all
I have been reading your comments and its really made me understand loads about Graves disease first hand.. thank you very much for that!!!
I was diagnosed with Graves disease in July and since then my life has been up and down loads!!!
Prior to me being diagnosed i was in a very bad way, i had lost 4 stone (i was actually exercising as well), i was very depressed, grumpy and insecure ( i took it all out on my boyfreind and family), i had a very high appetite, heart palpitations, severe tremors and much more!!!!!
In my mind i was fine and it was everyone else around me! I was too scared to go to the doctors and have the dreaded blood test, due to my phobia of needles!!!
I’m glad i went as i was dangerously over active, i was blasted with a high dose of Carbimazole and this then made me go very under active!!!! since then i have been up and down, i’am so fed up though as i have put back on nearly 3 Stone!!!
I don’t know what else to do, as i exercise loads and eat well????
I have started to get funny again with my boyfriend, i really don’t feel he understands though and keeps saying that i cant keep blaming my condition!! However this is really not me, i’m generally a very happy go lucky girl!!! but my personality has changed completely!!!
Sorry to go on, just need to air how i’m feeling!!!
Comments gratefully received, many thanks Tanya x
I went to my doctor about 12 weeks ago because I was suffering with aching joints; especially my knees, and was constantly hot and I was expecting her to say it was the menopause (I’m 46), so I was quite shocked when she asked me if anyone in the family had problems with their Thyroid. Anyway she sent me straight off for blood tests and I got a phone call that night saying I was over-active and had to go back in the next day. I’m so thankful that I was diagnosed so quickly having read some of your comments.
Looking back I’d had so many of the symptoms for months and never put two and two together. Once I knew, everything kicked in and my heart and pulse rate rocketed. I was signed off work for a week and put straight on Beta Blockers, which calmed things down but when I went back to work I struggled and was put on Carbimozole (15mg per day (not sure why they didn’t put me on them straight away!!)) and after a couple of weeks they kicked in and have really helped. I’m actually starting to feel relatively normal again!
I saw the specialist last week who has confirmed it’s Grave’s and I have to go back at the end of December. I’m now in the position where I have to decide which treatment to have. I’m leaning towards staying on the tablets and seeing if I go into remission rather than going straight for the Radioative Iodine or surgery but I’m still not sure!
My sister in law has Grave’s and went for the RAI treatment and she also has Osteopenia. My vitamin D levels are low but the specialist didn’t even talk to me about the possibility of osteoporosis, whereas the doctor said I may well be sent for a bone scan.
It still amazes me how much of your body is controlled by the Thyroid and what devastating effects it has on you when it goes wrong.
It is helpful reading everyone else’s experience.
Leola – yes stress is definitely a trigger.
Take care all.
I’m 28 and was diagnosed with Hyperthyroidism 7 months ago. Within 2 hours of having blood test done I was in hospital getting beta blockers and carbimazole. Free t4 levels were highest the doc had seen. I had high blood pressure (my heart rate was 140bpm at rest), sweats, palpitations, shaky hands, the need to eat everything and always hungry and I spoke at a thousand miles per hour . So I just take these pills and this all stops…easy. I knew nothing about having an overactive thyroid. All I knew was if it was underactive you gained weight. So I went home, took the pills and hoped for the best.
URRGGH
Then comes the muscle aches, leg pain, itchyness, my hair fell out, acne, insomnia, wanting to scream at everyone. Erratic behaviour, paranoia and ooh on the days it’s mixed with PMT nobody stands a chance. My poor husband sadly gets most of my anger as everything is his fault….isn’t it??
My first port of call wasn’t the doctor it was google. Lets google my ailments and see what disease I have. If I’m to believe google I have schizophrenia. Mmm. Then I came across Graves Disease. Armed with my print out, a list of my ailments and my hand held fan I stormed my doctors and demanded some help! I got transferred to an endocrine specialist who sent me for scans, blood tests and iodine scans.
I have been diagnosed with graves and I am currently on block and replace therapy.
40 mg of Carbimazole and 125mcg of Thyroxine.
I’m still a moody cow, I’ve put on 2 stone and have no energy to do anything. One minute I’m fine next minute I want to cry. I’m trying to stay positive but it’s becoming harder and harder every day to paint a smile on when I feel rubbish. I do feel like no one understands what I’m going through or how I feel.
Had recent blood test and it shows I am now hypothyroid so thyroxine has been increased. I’m still suffering insomnia, aches and pains, acne and hair loss. I have no eye symptoms. Recently I’ve been getting alot of colds, flu, bugs and infections so on a constant stream of penicillin. I fell like a pill pinata.
I’m on the block and replace til July 2012. Not sure what happens after that? Suppose you just stop taking them, cross your fingers and hope for the best.
I live in hope there is a light at the end of the tunnel. But when you feel crappy it’s so easy to cave in and spend days on the sofa eating chocolate whilst googling ways to lose weight.
It’s great to be able to read and share similar stories. I wouldn’t wish this on anyone but it’s nice to know I’m not the only one going through it and my symptoms and my madness is justified. My husband will be glad to know to it’s not me that wants to kill him it’s the Graves Disease.
I suddenly became allergic to various medicines in July 2008 and was given a shot of corticosteroid. This sent me into an anaphylactoid reaction whilst driving the car away from the hospital with my young daughter with me. It was terrifying. I had severe heart palpitations and couldn’t breath or focus too well. I was monitored for a couple of hours back at the hospital and sent home. Two days later I saw a GP who decided my WBC was high (of course it was I’d just been given a corticosteroid shot) and he put me on Cipro. I got sicker and sicker with stomach pain, black stools, severe palpitations, panic attacks and thought I was going to die.
Running from doctor to doctor for various tests I kept being told there was nothing wrong with me and that it was in my head. I had investigated my symptoms on the internet and was sure I was hyperthyroid but my blood results were just in the normal range although my TSH was only 0.5. I had a thyroid scan which showed I had a multi-nodular goiter but still the doctors wouldn’t listen going by my blood test results. I was continually shaking and the anxiety was a major issue. After 3 years my TSH finally hit 0.0 and the doctors decided to listen.
I was put on Carbimazole but after 3 weeks got hives and had to come off it. I was then put on PTU 5 weeks ago and 10mg beta blockers 2 x daily but I still feel faint, achy, dizzy and sick.
My blood tests are coming back now in the normal range but I feel so ill. Last week I had a severe dizzy spell whilst out shopping and colapsed. My husband took me to the hospital where I was monitored and they wanted to admit me but I didn’t want to stay. I had severe chills and muscle spasms and a rapid heart. Must have been some sort of storm because an ultrasound showed one of the nodules had haemorrhaged. My endocrinologist says I must have had a virus as a haemorrhage wouldn’t cause this although the radiologist disagrees.
How long does it take to feel normal again. I have had enough it’s now 3.5 years of ill health and not being able to work. I can’t drive now as I panic when I try which makes the symptoms worse. I hate being on my own as it scares me when the symptoms kick off badly and worrying about these things makes them kick of worse. This is just a viscious cycle and I’m sick of it. I was such a confident person before hyperthyroidism and I just want the old me back. Why don’t they just take my thyroid out or give me radiation to kill it then put me on thyroxine – anything has got to be better than this.
Thank you Simon for taking the trouble to share your history of Graves disease. I like other fellow suffers, gain an insight and help through the experiences of others it has provided.
Like many auto immune diseases, the symptoms seem to ebb and flow, possibly as a result of lifestyle events and stress in particular and maybe also dietary effects.
I was a 49 year old recently divorced man when I noticed my usual manic lifestyle and impatience speeding up. I kept myself furiously busy and developed little games to squeeze even more out of myself, such as catching the train with seconds to spare, arranging too tight a work and leisure timetable and showering and shaving in under 3 minutes.All classic syptoms of hyper activity.
I lost weight alarmingly as my hyperthyroidism grew, undiagnosed during 3 visits to my GP over several months.
Eventually a friends wife, also a GP I met was kind enough to ask my what was wrong and guessed it might be a thyroid problem. My own GP reluctantly agreed to test me,(whilst assuring me I had a virus) but phoned me in a panic a few days later with the results showing a reading of 8 times usual, 9 against a normal range of 1.1 to 3.1.
I was then given 80 ml of steriods and 60mg of Cabimazole daily for 2 weeks and reduced from there.
Unfortunately, I contracted Thyroid Eye Disease, including acute double vision some months later, which I saw an eye specialist for.
He recommended immediate double eye surgery on both eyes muscles and sockets, which luckily I ignored, prefering to wait another 6 months, even with the risk of a detached retiner. Fortunately, the prospect of the operations and the beneficial effect of medication helped improve the visison and bulging and another 3 years saw me back to 85% of pre-condition eye sight.
I am conscious of going on a bit too long, so ought to summarise one or two other points I would like to pass on to you, fellow sufferer.
1. Trust your own instinct as well as your professional medical team
2.Dont have a thyroidectomy unless you really need it, Graves symptoms can occur after, which is not always appreciated.
3. Check your diet, I find I am now alergic to strange things I never had problems with before, such as lactose, lamb, any oil, beer, etc.
Furthermore, before and after my diagnoscis, my syptoms were more in tune with IBS, but now I realise it was Graves all along.
4. Dont over do it , when you feel a bit tired or stressed, stop!
5.Have regular heart check ups. My runaway thyroind storm lead to heart disease and a quintuple bypass last Christmas.
6. Be possitive. I felt depressed at the thought of having a chronic illness, but hey, I’m still having fun and feeling 90% most of the time.
Best wishes and good luck to you.
Mark Jeffries.
I
took them five years for my diagnosis ,anxiety you know ! carbimazole paralysed my foot for two months so started on ptu for 18 months until remission for 6 years ,just diagnosed again and back on ptu. Describe my symptoms as having a nervous breakdown while my body destroys itself ,dont you just love the mental problems
i have had Graves for over 8 years the pain it has cause over the years has been tough .the eye pain,throat pain,the consant ,i’ll see you in 2 to 3 months from doctors is dishearting.The weight gain the weight loss,the chest pain ,loss of jobs ,mood swings,leg pain,being tired then haveing too much energy,blood test,CAT scans,now they want to give me radation treatments.(right into the side of my head)The double vision.The side effects from the meds,methahimazole,perdnisone.but the wost is when i take my sunglasses off and i see the reaction of people when the see my bulgeing eyes(i’m very light senseative).My Graves comes and goes ,what may affect me one day may not effect me the next.The doctors are a tough crowd unless the see textbook problems they dismiss you.I live in the top of northeast PA. and have been trying to get a support group going which is not working out too well,if there is anyone else in area i’m in. email me at jjgriffin570@aol.com and maybe we can start a group.
Hi. I have just recently been diagnosed with an overactive thyroid/graves disease and I have started my medication. I am about 4 weeks into taking it. I’ve been very low on energy and my mood swings have been awfull. I said to my partner the other day that I wanted to kill myself because I was so low. I’m constantly crying. I’m also having really bad stomach pains and “pressure” headaches. Is there anyone I can talk to? My email is triviumfan51153@hotmail.co.uk if anyone wants to email me, it also works with msn messenger.
Along with feeling down all the time, I am also feeling very paranoid and snappy. My partner has noticed how I have been and I am getting him down because of me. I feel bad.
Hi
I was diagnosed with hyperthyroidism 3 weeks ago. Saw endocrinologist in Sheffield 2 weeks ago. Started on 20mg carbimazole 2x a day and 40mg propranolol 3x a day. I had an antibody blood test to confirm Graves. Going back to see consultant on 12th jan. so been on meds for 10 days now. No problems. All a bit of a shock really as only went to docs feeling tired. Suffered with anxiety forever so had just thought it had come back. Tremors, bowel emptying more frequently, hyper feeling, shakes and pounding heart I had all put down to anxiety and doing too much with the kids. Not sure how long this would’ve been going on for. Not getting any side effects. Waiting to see what happens next…
Hi,
Thank you all, I feel so terribly low I am crying writing this feel as though my life is falling apart and can’t let anyone know how I’m feeling, though I know that they see it. One good thing I am not on my own.
I am astounded by the numbers of people with Graves who continue to struggle through life. I too have a similar story to tell but for me its helpful discussing Endo appointments what treatments are available and lifestyle choices including complementary therapy. Why are we putting up with the lets try and see or one treatment radical invasive interventions swap one chronic illness for another. Thyroid Advocacy Uk is a good and informative forum for hypothyroid suffered but we need a website forum for Graves suffers. Its well overdue.