My Graves

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.

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 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.

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.


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.

Simon Waters

210 thoughts on “My Graves

  1. sherri creese

    Thanks Simon, only a graves suffer understands how deliberating the condition is and only when you are getting better you realise how unwell you are. As for keeping any meaningful employment and getting people to comprehend how your behaviour, personality, performance is so totally out of your control. Everyday is watching a slow motion car reck and as unpredictable as the weather as your sought after employment goes up in smoke and relationships with partners are tested to the extreme. Graves disease needs a public platform so the public that are free of thyroid problems can just start to grasp the enormity Graves people struggle to cope with day to day.

  2. Kelly


    I’m a 34 year old female who was just diagnosed last September and I still struggle daily with recognizing that I’m actually sick. I’ve had ups and downs with my medication, often being in denial about my disease has prevented me from taking the PTU I have been perscribed. I tend to shrug my symptoms off as having a bad day or simply ignoring them (which often happens)
    People who don’t have personal experience with Graves (ie: close family or personal diagnoses, etc) don’t understand what it’s like.
    I have problems with my job- I struggle with my concentration, my desire to be at work, my desire to even get out of bed (most likely due to tossing and turning all night long). I’m irratible then I’m manically happy and suddenly feel like going for a run. I’m wonderwoman one minute and a worthless lump the next.. between the panic attacks and the feelings of euphoria, it’s really hard on a person.
    What’s worse is my mother is in denial I have the disease and gives me a hard time about being moody. She wants me to get a second opinon even though I have an endocrinologist and a conslusive thyroid uptake test. My doctor wants me to have the radiation treatment and be done with it but I’m not ready yet. (they don’t operate in Canada anymore, all they want to do is kill my tyroid and put me on different medication..)

    I just wish I could have a nice little stress free job where I could go at my own pace and maybe my symptoms will go away….. so far my head in the sand approach hasn’t made anything better.

    Thank you Simon, I appreciate your story and hope that it will shed light on our disease. All the best to you.

  3. Belinda

    I have just been diagnosed at 40, though I think I have had this all my life. Gaves explains everything. Sleep problems, tremors (I thought I was an alcoholic) hair loss, sore eyes, though I have genetically big eyes. I have weight loss but big legs, I have three children under 10 and I am at all times manic or in a slump. I am superwoman to my friends but only my husband knows how I collapse. We cannot sleep together for my sweats, tossing and turning, sleep walking and talking! (poor man). I have always thought I have been mildly depressed. Black dog literally dogs my family and I have a cousin who is bipolar. In addition I have had policistic ovarian syndrome and question how much all this hormone disruption has caused what I have. I so understand Kelly. Her experience is mine. I have to keep going though and try all the options. your experience is a real help to me and I shall draw off it. Good luck and I’ll post my treatment if I may.

  4. Holly

    I’ve just turned 20 and 4 weeks before, I ended up in hospital with hyperthyroism/graves disease. It’s been horrifying. Doctors’ were baffled at how it wasn’t dignosed before and I had many students in asking me questions. My T4 level was over a hundred when I was taken in. My blood pressure was 181/93, my pulse was 144 and my temperature was 37.8. My family haven’t quite grasped how ill I am and the only thing stopping me continuing my studies is this. I’m a musician. It’s hard to read manuscript when you see double. And harder to sing with a massive lump sticking out of your throat that’s obstucting airways! I’ve been given carbimazol and propanalol. Standard medication. But no answers. I’m 20 and my life is on hold until the NHS fix this. I am slowly falling into the dark tunnel of depression and I’m not being put on tablets for it too. Hopefully now, after my family read this, they might understand the difficulties I’m facing and not just the things they think I should be facing. Thank you for writing this. It is almost impossible to get real information about Grave’s.

    Thank you.

  5. Jaymie

    Hi SimonI’ve been fighting a looseing battle for at least 6yrs with extensive migraines and a whole list of such vast symtoms that despite going to just about every specilist stype you can imagine – no one could tell me what was wrong (you start thinking that maybe you’re going “mad” and it all all in your head) well that was until April this year when a GP measured my T3 and T4 levels and told me I had Graves diease.  What a relief finally a cure an explainatation to everything, but that did’nt last long an excellent speaicilist put me on Neo-mercazole and it really works you literally feel better than I’ve felt in the last 7yrs (ready to concur the world) but it only seems to help for about 3 odd weeks then I hit rock buttom again every one of the symtons come back and they seem to be worse they then change the dose and I feel fantastic for 3weeks and then rock buttom again over and over again.  I can’t carry on like this I feel like a seesaw I think I have to go for the surgery but I am scared I mean if they can’t get it right with medication then how can they get it right with surgery which is permanent?   My symtoms include Migranes,weight loss, mood chances, irretability, heart pulpatations, very sweaty hands and feet, Anxiety/ panic attacks fatigue and restlessness, pins and needles all day long, numbness of my limbs, week muscles, blurry verson, black spots in vmy ersion, and the worst is glare from the sun but especially lights at night go so so yellow they make the walls and doors look dark dark yellow and they look as if they climbing ontop of me making me feel closter phobic – I want to run away but there’s no where to run everywhere is the same – etc please help any advise?  Thanks

  6. **********

    Thanks for this post and the following comments. I can relate to every detail! I was similarly diagnosed around 40 with Graves Disease and they nuked it soon after. Sadly I had had symptoms for as long as I can remember. It still has been a daily battle of energy, moods , weakness, loneliness of lying around for days and years now,, social hell. job hell, surreal panic attacks , double vision, facial edema bulging eyes, beard and hair loss, etc, etc. Really a lot more.
    The WORST part of all of this is that it`s completely written off by my family and friends as due to failures on my part, inconsistency of my personality or imagined and hypochondria.

  7. **********

    So the other worst thing is that representing myself is nearly impossible because most of the time EVEN I can`t actually tell that something is wrong with me. I just attribute it to things in my day to day life, why I`m so nervous, hyper/weak, tired, achy, out of it, sweating, sick, etc.. So I`m always second guessing every experience. And no one else would know to attribute `how I am` to it either. It`s only in reflection that I can tell. Or when the episodes are so terrible `that there is no chance` that I`m just feeling really nervous, etc.
    When I`m feeling good I literally run marathons, am a pretty good rock climber and maintain many good friendships, etc..
    Things get a little off, or there is an adjustment in my medication and Ill be lying around for weeks, not depressed or happy just like someone said earlier, totally tired and unmotivated toward life.

  8. Rachel

    Hello Simon
    I was so sorry to hear of your illness and the impact it has had on you. At the same time I would like to thank you for giving an honest insight online into your life.
    My Mum was rushed into hospital 2 weeks ago with shockingly high blood pressure and has just been diagnosed with Graves’ disease and has now been prescribed Carbimazole.
    I was just wondering if you are aware of any national support groups in the UK? I discovered a Foundation & forum in the US but my Mum is not online and the US rather too far!
    Any advice would be more than welcome.

  9. Becky

    Hi Simon,

    Thank you for giving all of us a glimpse into your life. I live in the US. I believe that I have had Graves since I was a teenager. I have always struggled with weight issues, bathroom issues especially, which were quite embarrassing as a kid 🙁 I was fainting, hands were shaking, my mind was going 100 miles an hour, I couldn’t stay out of the bathroom, couldn’t stop talking and talking nonsense too! I hurt everywhere. I wanted to get up and go but my hurting body wouldn’t let me. So, my story is… My younger years weren’t the greatest. My parents didn’t seem to get along and it always caused me a lot of stress. As a teenager my parents split up and still caused much stress. All the while I felt odd…. I was married to an abusive alcoholic for 12 years and had 2 kids. Which of course is more stress…. I left him and finally at the age of 37 was diagnosed with Graves Disease. I also ate a ton of artificial sweetners while I was trying to lose weight and I hear that this could be a major contributing factor in Graves! I had RAI in January of this year and am now still on the synthroid roller coaster. My hair has been falling out and now my muscles hurt again. I think I am on too much meds right now.. My mom and my fiance are great and are super supportive and I thank goodness fr that! My children think I’m nuts sometimes and that I “flip out” for no reason… The littlest things make me scream… I also adopted my little nephew because he was being abused (more stress). I have a few great friends who sort of understand. So, I guess you could say I have a good support system… Well, I just wanted to share my story too. There is sooo much more to it and I could probably write a book. I hope you all feel good some of the time… I am leavig for a vacation to St. Martin in the Caribbean in 26 days and man, I hope feel good there.. Take care 🙂

  10. Rachael

    my boyfriend has had graves disease for a few years and 4 months ago we were told that he was to come off the medication as they thought he was free of it, yesterday we got a call saying it has come back. i’m so frightened for him as we have many stressfull things happening at the moment and i’m worried about his mental health, he seems reluctant to do anything about it and i don’t want to nag as this might stress him even more. it has been impossible for him to even get a doctor appointment and in the last year he was seen once, their blase attitude has been sickening. we have been looking for info on the effects of surgery when i came across this article, i was wondering what sort of quality of life is to be expected after surgery?. it was very insightful and i thank you for writing it, many of the comments are like a description of my boyfriend, as if someone is writing about his day to day life. i was also wondering if there is anything i can do to reduce the mood swings? i feel like i’m walking on egg shells sometimes. many thanks again

  11. Susan Hanson

    Hello Simon,
    I have graves desease too, I have been having treatment for an overactive thyroid for the last 4 years. I was on carbimazole and propanalol for a while, and my thyroid level was ok until my eyes felt blurry and my eyes were feeling gritty. The specialist said I have Graves, he put me on another drug that I can’t remember the name, it has been mentioned in a previous comment on your site, well after a month of being on the drug, I came out in an alergic rash all over my body. I stopped taking the drug immediately, I am now seeing a dermatologist who give me creams that don’t work, that was a year ago. I am also seeing an eye specialist, I have appointment with dermatologist next April, so I am not taking anything at the moment. I have had one radioactive iodine treatment this time last year, that didn’t work, Im waiting for another appointment for a repeat of that. My eyes are all bulgy, I have drops to take 4 times a day and another drops for night, I still have blurred vision. I have the shakes, nerves, anxiety, mood swings. None of my family realises what is wrong with me. I have had two of my grandchildren living with me for the last 6 years, their mother, my eldest daughter, died just before Christmas, she was brain damaged for the past 6 years in a care home. So I guess that has been stress related, there is lots more but too much to go into. I have an appointment on 11th Nov for a scan. So it is all ongoing. I just live with it and get on with life. I became a Christian 4 years ago and I must say that I find it not so lonely walking with Jesus taking each day as it comes, now I couldn’t live without him. I am 63 now, I do feel greatly for people suffering with Graves at such young ages. I probably had it but didn’t realise it. Thank you again Simon, it is nice to know I’m not alone with this desease.

  12. angela

    hi simon last week i was diagnosed with graves disease and didnt understand a lot about it till i read your story .. i had a hysterectomy 15wks ago and im now on hormone replacement therapy . i thought my mood swings were due to the hrt but now have been told about the graves disease my gp has put me on 30mgs of carbimazole per day . could you tell me the symptoms of graves disease as im still in denial xxxxxx thank u again

    1. Simon Waters Post author

      The symptoms are well listed at the sites linked from my UK Thyroid Info page. Thyroid Manager is the best place to start if you can cope with the medical terminology, otherwise try the “Living with Graves'” forum, which have some introductory material for those newly diagnosed.

  13. Lizzie Wright

    Hi Simon, i also have graves disease and know how frustrating it is. I am 24 years old and work as a beautician. I have gained 2 stone and have gone from a size 8 to 12, i also get really hot as my thyroid is hyper and at 70. My hands are really shaky so have had to finish work as it is impossible to carry out beauty treatments when im hot, shaky and talking utter rubbish!! I also dont sleep and when i do fall asleep get these really weird feelings in my tummy which can only be descibed as an adreniline rush. My eyes are itchy and feel as though they will pop out of my head. I have to wear my sunglasses some days because the slightest bit of light makes me worse. i also have a large goitre and feel like a freak. I dont want to leave the house and feel like a really bad mum to my son. I went to see a specialist and he did not no why i had gained weight and my thyroid was overactive so have to look on the internet to diagnose myself ha, as many people dont no about graves, even the specialist who is supposed to. I am on 60 carbimazol and propanolol but my symptoms are getting worse. I have had a really stressfull year and believe that is why i have this disease that i cant get rid of. I am very grateful to you and others who share their experiences with others as it is important that this disease is better researched and publised more, thanks xx

  14. michaela wicks

    Hi Simon

    My daughter Jessica was diagnosed with an over active thyroid this summer and I have just opened the letter from her consultant that confirms that she has Graves’ Disease.
    I have found your site and although I am alarmed and saddened that she has has this so young (she’s just 15 years old) I feel as her mum and the one that deals with this on a daily basis I had no idea that there were so many sufferers out there. It is comforting that there is this forum. I did think I was going out of my mind back in summer when her behaviour was intolerable. She used to swear at me, awake all night, her school work suffered, her appetite was enormous and she just did not stop talking. I initially thought she was taking some drug like speed I just couldn’t cope with her. I later received a call from her GP to confirm that she was over over active and she required mediation immediately. She has a consultant at Frimley Park Hospital who seems to have a grip but I must say her GP is fantastic and spotted the signs a routine check up.
    She is on school hols at the moment and to be honest has slept most of the day as she is awake most of the night. Like a vampire!! She seems to have accepted this illness and doesn’t moan or anything. I love her for that. I worry about her all the time and I think it’s me that needs the support. I check on her when she’s sleeping to check she
    is still breathing and if I don’t see the bed clothes move my heart is in my mouth. I don’t know if I will ever be able to relax completely. I want her to have a normal and happy life and try not to be ‘over protective’ of her but I can’t help it as she is my only child.
    Thank you all for reading this.
    Take care all of you…

  15. Holly

    Hi Simon,
    My earlier message, like so many others who have posted here was news on how badly I was coping. And I’d like to post this to help the others looking to you for guidance. I am now awaiting surgery which is a few weeks away, and I’m looking forward to going back to a regular life. I was placed on citralopram (an anti-depressant) in November and I’m feeling great. Brighter. Remember everyone, your GP is there to help and we don’t need to feel down about our condition. It’s still tough but if I don’t cope, my family won’t cope with my illness either. I can’t fall apart now. I look for all other options. Thank you again for writing this, I thought you would like to hear a positive amongst this site. I hope others will see some light now they know it comes quick.

    Thank you.

  16. kim

    Hey Simon

    I was diagnosed in September last year with Graves disease, although I had had the symptoms for a long time before. On their own, it is easy to write them off as having a bad day – tired, stressed, anxious – but added together, you know something isn’t right. I actually visited my doctor for something else entirely, and happened to mention the symptoms I was experiencing as an aside. About 5 blood tests later, and a visit to an endocrinologist, I’m confirmed with Graves.

    The main symptoms I had were:
    hearing my heart beating in my ears
    hand and leg tremors
    itchy eyes
    sensitivity to light and heat

    I am on Carbimazole – 45 mg to start with like yourself and blood tests every 2 weeks to get the levels right. About 10 days into the treatment, and I was on top of the world! I could get up at 6, spring out of bed, and stay awake till 10 or 11pm at night!!

    Now on 15-20mg per day. Most of the time it works well, some days I can work into the night, which I haven’t been able to do for a long time, some days I just go to bed early and sleep (I didn’t have any issues with sleep – but waking up feeling like I had run a marathon!).

    I’m 35, have a 7 year old daughter, I think I have gotten off lightly compared to what it could have been. At the end of the day, although its not yet curable, it is treatable.

    I appreciated your post. It sums up how I feel on a day to day basis – some days are good, some are bad. I just keep going – I have no other choice. So far surgery has not been mentioned – unless I want to have another child. I am also considering alternative therapies in conjunction with the carbimazole, including homeopathy and acupuncture.

    I’m going to direct a few close friends to your blog here, so they can have a read and just get a better understanding of how I feel on a day to day basis!

    Thanks mate!

  17. Joanna

    Hi simon
    I was diagnosed 5 years ago with graves disease. For the past year or so iv had awful mood swings, il cry over non important silly things or il get the hump and blame my boyfriend, but id then feel guilty and say sorry i actually just thought i wasnt a very nice person. Yet again last week another pathetic argument but this time my bf of 3 and a half years who has had the patience of a saint told me he couldnt deal with me anymore and told me it was over! To cut a long story short, i racked my brains to think why i couldnt control myself and then realised that for the past 2 years i havnt taken my carbimazole, i didnt think i was actually ill, i thought i was fine, i didnt really know that my awful mood swings were because of graves disease! Anyway iv been to the doctors and im back on my tablets so fingers crossed. I explained to my boyfriend about my condition and showed him a lot of websites and hes willing to try again, but the sad thing is he says he doesnt love me and feels numb but wants to try again as what we had was so good! Im angry at myself for allowing this to happen

  18. natasha

    I cannot thank this forum enough, as I have been struggling with GD for eight years and it has felt like a very lonely battle. My boyfriend, of just four months, cannot understand my mood swings, when I suddenly get depressed and out of sorts, he thinks I’ve been drinking. Sometimes I just want to run away from myself but there
    is no where to go! Thank you for the great support. It’s comforting to see that I am not alone in this and there are those that truly understand.

  19. Angela

    Last week was the first I had ever heard of Graves disease! I am a 39 year old woman who has just been told I may have Graves (they will be doing more testing), I exibit many of the symthoms, shaky, heart palpitations, frequent bathroom use, cry easily, always hot, and weight lose. But for the last week I have a new one; which is how I found this website. I have severe headaches, which I have never had. Actually I have always been healthy and prefer not to be medicated. This is the reason I feel alone in this disease(which thanks to your site, I know I am not) but I do not want to be on medication for the rest of my life that may have side effects worst than what I have now. I think I may look into natropath remedies, but will that be the answer??

    1. Simon Waters Post author

      Hi Angela, the antithyroid drugs for Graves’ are safe and effective and give sufferer time to consider their options, or can be used for long term treatment. Untreated Graves’ is a potentially life threatening condition so one should undertake one of the mainstream treatments (drugs, surgery or RAI) supervised by an endocrinologist unless the condition is exceptionally mild. Join one of the Graves’ forums to meet some folk. The Thyroid Foundation of Canada use to have an excellent newsletter (which for reasons I never ascertained they sent to me in the UK for a while), which I assume is still around.

  20. Heidi

    I can’t thank you enough for this site. I have had my whole family read your story and the posts following. It has helped them to understand that what I am going through is REAL. I was diagnosed with GD 3 and a half years ago and had RAI therapy done then. I have just relapsed and have been in bed for three weeks. I have been taken off of all of my thyroid medications and after 2 weeks of monitoring my TSH levels I am still hyperthyroid. Dr. Is discussing a second round of RAI which scares me. Is it possible to have the thyroid removed surgically after an initial RAI has failed?

    1. Simon Waters Post author

      The doctors should be using thyroid hormone tests not TSH to assess thyroid status, as TSH can be suppressed after RAI. Tests such as fT4 and fT3 are most appropriate.
      “However, it should be noted that the TSH response may be suppressed for weeks or months by prior thyrotoxicosis; thus, the TSH level may not accurately reflect hypothyroidism in these persons and should not be used in preference to the FTI or FT4.”

      As far as I am aware there is no reason not to have antithyroid drugs, or surgery, after a failed course of RAI. A surgeon (or your doctor) should be able to advise if such a procedure is appropriate for yourself. In most cases it is customary to wait 6 months or more after RAI as sometimes the effects take a while to be noticed.

  21. barbara

    In 2005 I started doing my nursing degree. I moved work location and found myself faced with endless assignments and dissitations. I also found I couldnt walk very far without struggling for breath, I couldnt talk and breath at the same time and I put on 4 stone. I put all this down to the change in circumstance and my breathlessness and palpitations down to me being a fat smoker. Four years on I found myself menstruating for two weeks out of every four so eventually went to my GP demanding a hysterectomy. he ordered a full set of bloods and then called me back to the surgery to ask if i wanted the good news or the bad! He then told me my female hormones were fine but I was hyperthyroid. My initial reaction was to be really p’d off that I should have had the energy levels and body of a 21 year old; instead I was fat, tired and forgetful. I was refered to an endocrinologist and started on the block and replace therapy. I remained on 40mg of carbimazole and 75mcg of levothyroxine for a year but still managed to go hyper toward the end of that year even with medication. In January this year I had RAI and last week i saw my endocrinologist again; my levels have soared up despite being nuked! I’m now back on block and replace for 3 months, this will then be stopped and I’ll be retested 2 months later to see whether the RAI has had any effect at all.
    I, like most of you, have had enough now. I cant lose weight, I have constant headaches, I dont have any energy surges and I could quite happily stay in bed all day. I come home from work and regularly break down in tears, relieved that I have got through another day but so, so tired and low in mood. I constantly pick at my husband because I think he has done something which really bugs me, then an hour later I come back down to earth and realise that actually, he did nothing. Luckily he is a good man who understands what is going on and makes the effort to keep himself up to date.
    Apart from feeling so rotten all the time, the thing that really hacks me off is that my endocrinologist does not seem at all interested in how I am emotionally; her concern is my levels. She has no understanding of how my weight, my mood and my apathy affect my life!

  22. Ingrid Ryan

    Hi Simon,

    Thank you for sharing your story, it was very interesting for me as I am currently at the stage of making the decision whether to choose subtotal thyroidectomy or RAI to treat my Graves (as I have been on anti thyroid drugs for a few years with no remission in sight!) You mention in your story that looking back, you are not sure that surgery was the right move? I wondered if you could share your thoughts on this and what mentod you would have gone for if you had to do it over again? My specialist initially recommended RAI, but has also said that he is 50/50 on either treatment, which is making my decision harder! Any thoughts you have would be wonderful.

    Many thanks!

    1. Simon Waters Post author

      I was stable on Carbimazole at the time I had my subtotal thyroidectomy, whilst the drug free years after that surgery were very good, with the benefit of hindsight I might have stayed on the same low dose of Carbimazole. However I would also have taken a much keener interest in understanding my blood test results, something I only really did when I was over medicated. As it is being on block and replace, I’m only about as stable as I was back then, but now have to take 40mg Carbimazole daily rather than about 10mg as a titration dose.

      I’d be tempted to suggest total thyroidectomy, but my limited experience of thyroid hormone from a bottle is that it isn’t as good as the “real thing”. Being chemically identical I don’t know what the difference is (T3 release maybe), but it is pretty clear it isn’t as good. There is a study where they gave thyroxine to healthy volunteers and noted decline in various psychological scores.

      It is a difficult decision,. and with some reasonable expectation of improvements in treatment to come, I’d be tempted to err on keeping one’s thyroid intact as long as one is in able to function tolerably well if one is young (either titration dose antithyroid drugs or block and replace), with total thyroidectomy (unless you have specific reasons to avoid it) as the first choice of “fix”.

  23. Sha

    Thank you so much for your story Simon and thanks to everyone else for sharing their stories. It feels great to know that I’m in good company. I encourage everyone to hang in there and remember you’re not crazy and you’re not alone 🙂

  24. Sharon

    I must completely be in a “thyroid funk” to have just spent over an hour browsing various sites and reading people’s stories! At least I now feel I am not alone. My battle with Grave’s Disease has been an uphill one, not to mention a losing one. I was diagnosed with hyperthyroidism over 4 years ago, and upon a thyroid uptake scan, confirmed as a Grave’s Disease sufferer.

    I literally went from feeling fine/healthy/normal one day to taking 2 naps a day (often with my shoes still on) 24 hours later. After 3 months of this odd behavior, I was finally awake long enough during business hours one day to get my toosh to the doctor. 32 years old with through-the-roof thyroid levels…that suddenly explained the headaches, the inability to sleep at night or stay awake for more than a couple hours at a time during the day, sweating, tremors, and inability to gain weight while eating like a horse.

    After my family physician made this preliminary diagnosis, it was off to the endocrinologist for me. In a matter of a few months, I went from feeling fine to suffering severe hyperthyroidism. My mother also has Grave’s Disease and when she was diagnosed back in the 70s, it took doctors a few simple days to shut her’s down and get her on hormones to right her levels. I’m now starting to think she was extremely lucky, and oddly enough, she cannot at all relate to the severity of the symptoms I have been suffering. My condition was so bad that I even the simple task of brushing my hair or taking a shower was elevate my heart rate to a point where I would almost pass out. My resting heart rate was equivalent to a runner’s, and the doc had me eating handfuls of beta-blockers daily to try to slow my heart (they didn’t work…at all). Needless to say, I took the 3 leading anti-thyroid medications for several months each, and my thyroid levels never flinched. A year into this nightmare, I finally succumbed to radioactive iodine. I was monitored for six months following the radiation, only to be sadly disappointed that not only did the treatment fail, my thyroid must have gone into defensive mode and stepped it up a notch…to the point where I began developing a goiter, started losing hair and my eyes began bulging out of my head.

    At this point I completely lost hope. Getting a $6,000 bill in the mail for failed radioactive iodine treatment when you are a single mom is like getting a gunshot wound in the gut. I couldn’t get my problem dealt with until I dealt with the financial nightmare my war racked up…treatment, medications, uptake scans, labwork…I was a pretty $9,800 in the hole, WITH insurance! Defeated is an understatement. I was fighting the onset of depression with everything I had in me. I kept barreling forward, refusing to even acknowledge my situation, my condition, or my ability to “deal with it.” It would be 2 years before I could get into a doctor’s office again to begin my fight again.

    During my “time out” period, I decided to go back to school. Before I had my daughter, I had completed my 2 year degree with a 4.0 GPA. I was quickly accepted to a local university, awarded scholarships for my perfect grades, and then had the nightmare experience of watching my grades progressively decline with each passing semester. All of my professors were aware of my condition, but the debilitating effects are not something people can understand if they have not experienced them. My attention, ability to concentrate, ability to wake up early enough to get to class, or to get to the next class on time because my heart felt like it was going to explode…were all completely out of my control, no matter how desperately I fought. Trying to get assistance from the Student’s with Disabilities Office at the University was useless. They do not provide assistance or services to students whose condition might affect their ability to come to class on time or regularly. My current endocrinologist was kind enough to write up a letter to them explaining all the symptoms and side-effects of my condition in hopes they would realize that my “disability” could manifest physically and mentally and WOULD be debilitating when it did. That didn’t help either.

    Fortunately, I am almost at my 2nd year back in school, will be graduating this fall, and my endocrinologist was able to determine an effective radiation dose that DID shut down my persistent thyroid. That was at the end of 2010, and I am currently “experimenting” with Levoyxl dosages as my doc tries to get the precise dosage nailed down. Half of the eye swelling went down (I’m still stuck with bulging eyes, but no where near as bad as they were), the goiter disappeared, my heart rate dropped to a normal level, and I actually find myself getting chilly in air-conditioned rooms again (yippee!) and not sweating unless I have a reason to. I try to remind myself of these “goods” as I battle with the damage this experience has done to my appearance. I no longer look like “me”…I am half Asian and have the relative “flatter face” that Asians do. The consequence of bulging eyes and a flatter face is that I now have enormous sunken indentations below my eyes making my protruding eyeballs look that much scarier, especially considering my eyelids became “stretched out and saggy” from accommodating my huge eyeballs for a few years. I look tired, worn-out, dead even. When I had my photo taken for my student id, I actually cried in the student id office when I saw the picture. That was 2 years ago. That was the last photo taken of me. I stopped going out with friends, going on dates, and even stopped looking in the mirror. While I am on the mend today, I am far from the confident “me” I knew and loved before all of this, and it tremendously hard to keep depression from setting it in. Finding sites like this with stories like these definitely helps 🙂

    Best of luck to everyone battling Grave’s Disease, and may those of you who are not (but know someone who is) be always understanding and supportive…

  25. collette

    wow what a great site,my daughter developed hyper 2 years ago she was 13 as you all explain the same symptons as my daughter tremors racing heart,weight loss,mood swings,sweats etc on taking her to the doctors i was told she was suffering from anxiety attacks and they give me a booklet on how to deal with her anxietys,very quickly she was deteriorating,she went from being a healthy weight to skin and bone,i was so worried,one evening i returned from work,to find her hands and whole body shaking,and my daughter telling me she thought she was dying,and insisted taking her to a and e,i did not know for the life of me what i should do,as i was told by her gp it was anxiety,i tried to keep her calm cuddle her and see how it went,after half hour,i thought,therres sumthing wrong here,took her to a and e,she was seen straight away,put on hearrt monitor,her bloods were taken,her heart rate was at 175 to 180,blood pressure taken,after about an hour,test results came back as she was suffering from hyper t. She was admitted into hospital and given carbimazol a high dose,and propanalol,to stop the thyroid and also to reduce her heart rate,she is currently still on carbimazol.of 10 mg per day and also on just before xmas my daughter decided she didnt want to take her medication no longer as she thought that the medication was making her put on weight,although i reminded her everyday to take her medication,and i trusted she was.untill february 18th this year when my daughter was rushed into hospital,suffering with all the same symptons but worse,on arrival to the hospital i was told,its possible that she is sailing into the wind to thyroid storm,where she hadnt taken her meds.i was told if i hadnt taken her into hosp when i did,it was possible my daughter would not have been with me the following day,she was in hospital for a week,and then sent home,we are now back to the begining of treatment,and possibly another 12 to 18 months of hospital visits,its taken 6 weeks for her to start feeling better in herself,she still aint right,she hates takin her meds, but now she also knows the consequences of not taking them, and that could be death,this whole experience has turned my life upside down,i ensure that she takes her meds now by watching her take them,even tho she is 15,i cant go through that again,i hope its taught my daughter a lesson,her anxietys have worsened since she suffers lots of panic attacks,she is in her last year of school,and about to take exams,but at the moment im struggling to get her up for school,she has had sooo much time off school,this illness has effected her education,i just hope she gets better and achieves what she sooo deserves,thankyou everyone for reading my post,i really enjoyed reading yours and opened my eyesxx

  26. Rebecca Lunn

    Hi Simon, Reading your story & those of others have eased me a little, however this is a really hard time for me, I find myself a complete wreck. One of the first posts described me down to a tea – wonder woman one minute . A useless lump the next! Worse thing is people around me don’t get it! I am so teary & cry at everything, but my consultant still maintains that he isn’t entirely sure all my emotions are due to my thyroid! But everytime I read things like this I see that most people with Graves describe their emotional state exactly as I would!

    I was just diagnosed in January this year, I am a cardiology nurse and am still in maternity leave, my boys are 7 years & 7 months. I am due to return to work next month – at a new & very busy hospital I may add. Consultant has said I should not until my levels are better. I also do not want to harm patients through lack of concentration/incompetence spurred on by my insomnia and up and down emotions! But on the other hand I think work will be good for me….I suppose I should see how I go.

    What I do want to ask people, it’s very important to me & haven’t found an answer so far, is; prior to full blown thyrotoxicosis did anyone have weird symptoms? Basically what I mean is, I know that I haven’t always been out of range, as my TFTs were normal on the two other occasions previously I had them checked (I already had a goiter but normal tfts) but, I’ve known for a number of years something wasn’t right, if you get me. I’ve always had hot, and I mean red hot hands (patients appreciate this) and what I diagnosed myself with years ago as HFS – hot feet syndrome! My feet feel like I’m walking on hot coal, it prevents me sleeping & is generally uncomfortable. I’ve always been aware that it was likely hormone related. There’s also the insomnia, I had this years before diagnosis or severe symptoms. Plus the fact that I’ve always been an anxious person….I can’t work out whether these things are graves disease or just my personality / physical flaws!

    The sweats are currently driving me insane. My make up slides off my face & I shower at least twice daily. I irritable, anxious & weepy. My hands shake and my muscles ache. But what pains me the most is, after all my life eating like a pig!!, but staying relatively slim. Now I’m overactive & I haven’t lost a pound! If anything I’m the heaviest I’ve ever been!! My appetite is so huge! It always has been but now if j don’t eat I feel sick!!

    Ranted enough now, any feedback would bd brilliant 🙂

  27. alyssa

    Hi simon
    I finally feel like people know what its like! Thank you for sharing your story!
    I always felt alone and sad that i had a Disease.. but now that i am not alone i feel more accepted i use to always get made fun of growing up that i had a disease but it only made me stronger! My doctor tryed to make me feel better and told me if i kept taking my pills that one day it would go away but he lied.. I have had graves disease for 12 years now! Im only 18! I have scared to many people when my heart starts to race and i cant breath i go to the hospital and they usually tell me that nothing is wrong with me i just got to excited over somthing! Thanks to all thoses who shared thier storys! <3

  28. Claire

    Hi Simon,

    You story sounds so familiar to me, I am currently on Carbimazole for hyperthyroidism….but only recently found out (due to seeing it on the doctors computer, not by being told) that my hyperthyroidism is due to Graves Disease.

    I feel my doctors have been negligent by not mentioning this to me and after reading the symptoms I have realised that my poor quality of life is due to Graves Disease. Im really angry that this has been ignored and I have thought I was going crazy.
    Your site is really good in helping people realise their not alone in this and I thank you for it.


  29. jo

    hi simon,its great that you have shared your story .I was diagnosed with graves disease 18 years ago.I had all of the symptoms but for me the the severe hair loss and bulging eyes was the worst to bear.Many people have little knowledge of the disease and reading peoples comments certainly brings those dark days back.I was treated with two doses of rai which consequently left me with hypothroidism.I currently take 125mcg of thyroxine daily.Im 39 years old and at when i was 29 i began with premature ovarian failure.I have since discovered that this could be a side effect having rai treatment.Im so glad i had my daughter before this occured.I still have trouble with hair loss and my eyes are slightly bulged but apart from that im fine.I believe looking back i started with graves four years before i was diagnosed.I think more info needs to be out there to help wishes to you all

  30. Gloria

    Hi Simon
    Have just literally come across your site which, by the way is so enlightening. I will write at a leter date I am currently poorly as my GD has come out of remission following subtotal surgery 7 yrs ago. In the past 2 months have seen my GP on numerous occasions, Gastroentologist and more recent Urologist, during this period have had CAT scan Endoscopy, Gastroscopy, Sigmoidoscopy, Gall Stone & Bladder removal, Ultra sound kidney scan, IV kidney Xray now awaiting cystoscopy and repeat endoscopy and gastroscopy, and GUESS what non of these people will take on board the fact that my graves is out of remission!!! until my GP decided she would do my TSH! revelation! but still I cant get any of them to take on board that my GD is probably responsible for the way I am suffering with all the horrible things on a daily basis. I am 57 yrs old in a week and feel like I am 77!!
    I will write again when feeling better.
    The sight is great and am really pleased I have found it. I may be able to gleen some help from somewhere through your sight.


  31. Lizzie

    I wrote on here on 22 nov 2010.. I would just like to share my experience of my total thyroidectomy. I had my operation 3 weeks ago and feel a lot better already, I feel calmer, my water retention has disappeared, my eyes less swollen, I can climb the stairs and get out if my car without difficulty. This is a massive improvement already to my life after being a recluse for a year.. I’m 24 now and feel hopeful to getting my life back. My thyroid levels are normal at the moment at 12 as I’ve been on 100 micrograms levothyroxine since my op. At the highest my thyroid levels were at 100 so I do feel a lot calmer and a lot less agitated.. the surgery was painless, suprinsingly. The only complication I had was that my calcium levels dropped quite low so I had to stay in hospital for 4 days on drips. Other than that I’m really happy with the experience up to now and my scar is healing nicely. I hope this helps anyone considering surgery

  32. Jacqueline

    It’s great to read all of your stories and know that there are others out there who understand what I’m going through. I was diagnosed with Graves Disease 3 months ago but I think this has been going on for a couple of years now. The endocrinologist prescribed methimazole. After 2 days of taking it, I started getting nose bleeds and my urine turned dark. I stopped taking it and have been looking into alternate ways of getting my thyroid operating normally again. The first thing I discovered is, it’s an auto-immune disease, which means my thyroid thinks I’m under attack and is ramping up my system to deal with the attack. That made me wonder: What’s causing my system to think it’s under attack. I had a lot of tests done, one of which was a heavy metal test. The alarming results came back: I have extremely high levels of mercury and lead in my body. My thinking is, get the metals out of my body and my thyroid will calm down. I think that, under ordinary circumstances, given a stressful situation, my thyroid would go into overdrive and as soon as the stressful situation was over, my thyroid would calm down. However, since I have these toxins in my body, my thyroid is constantly stressed, so add a little more stress to that and my stats go through the roof!
    I came across a youtube video by a man who was also diagnosed with Graves Disease.
    This man talks about overcoming Graves Disease without surgery or radiation. He mentions the importance of obtaining an adrenal gland stress index test. According to him, if the adrenal gland is out of whack, that will adversely affect the thyroid.
    My feeling is, doctors offer medication and/or surgery that deals with the symptoms, not the cause. I’m determined to discover the cause of my overactive thyroid, remove it, and restore my thyroid to health.
    I will report back on my findings. Good luck to you all!
    I’m looking into that first thing tomorrow.

    1. Simon Waters Post author

      Hi Jacqueline,

      your determination to find the cause is inspiring, but you will likely need to control the symptoms to give you energy to do this. Also suggest you track down some people with experience, their was a Pam who hung around the Mediboard forum (now ) who has been this route before you with some success.

      Whilst methimazole can increase the risk of bleeding the severity and speed of your reaction is unusual, and might point to another underlying health condition that makes bleeding more likely. I would press your doctor to follow this up.

      The known causes of Graves’ disease that are addressable are limited. People with gluten intolerance have been known to develop Graves’ which remits when they avoid gluten, and it would be naive to assume there aren’t other causes like this. Cedar pollen is a documented trigger as well. Some suggestion dodgy well water can be a trigger, but in the case of triggers simply avoiding them is not enough.

      Heavy metal poisoning hasn’t specifically been linked with Graves’ disease in the past.

      Most Graves’ disease patients have a family history of autoimmune disease, often thyroid disorders, MS, Lupus, which strongly suggests we inherit a propensity to some types of autoimmune disorder.

      I would treat medical advice from anyone claiming to be a Chiropractor with extreme suspicion, I wouldn’t even use them for back pain relief given what I’ve read of the evidence. Also there are some shady people offering heavy metal tests, probably best to check the credentials of the people who did the tests carefully – i.e. how many people get a test that say all is rosy, make sure they aren’t selling some sort of “detox” scam.

      As regards things other than Methimazole, there is PTU (may have same side effects as Methimazole), Potassium Iodide (unfashionable but works for some), there are some less commonly used drugs that have some impact like Lithium, and there are a few herbs but these are much weaker than the convention anithyroid drugs. Otherwise it is things like beta blockers to suppress symptoms.

      Remember Graves’ is a serious condition, before the modern treatments most sufferers would die from Graves’ or related conditions, so leaping back to treatments that pre-date the modern era because they are “natural” might not be the smart move. In the modern era most people with Graves’ disease can expect a near normal life expectancy once the hyperthyroidism is properly controlled (although we are less good at dealing with the eye problems that sometimes occur).

  33. Jacqueline

    Thanks, Simon, for your insightful response. So far, I have been keeping the symptoms from becoming severe. My eyes are not affected at all, except for sometimes double vision when I’ve been at the computer too long. My heart rate (except for when I was taking the Methimazole and it leapt up to a frightening 119 BPM) is hovering around 80 BPM. I’ve pretty much eliminated gluten and refined sugar (an autoimmune trigger) from my diet and eat lots of cruciferous vegetables (broccoli, brussel sprouts, cauliflower, cabbage) and meditate. Because of the tendency toward rheumatoid arthritis, I’ve also eliminated foods in the nightshade family (white potatoes, tomatoes, eggplant, red and green peppers).
    You are right about the dodgy characters and I do plan to have another heavy metal test done before starting any detox program. The challenge has been finding credible lab testers.
    Being on medication for my entire life is not acceptable to me at this. I plan to rule out all alternatives first. And you’re spot on about the autoimmunes. Both my mother and grandmother have rheumatoid arthritis, which is another autoimmune disease. Thankfully I’ve managed to stave that off so far. although battling the Graves Disease has weakened my system and recently I’ve begun to have shoulder pains.
    I will look into the other drugs, as I’m afraid to go back to the Methimazole after the nose bleeds, rapid heart rate and dark urine.
    My problem has been the weight loss. I’ve gone from 8 stone to about 6 stone is a short period of time. I’ve always had a fast metabolism to begin with, but now I can’t keep the weight on even though I eat constantly. I have been taking a mixture of bugleweed and lemon balm and this seems to be helping somewhat with the heart palpitations. I will keep exploring and keep you posted.
    Thanks again!

  34. Sonja Huckle

    Hi, reading some of these stories has made me realise I am in no way alone with this, and I also see that I have been relatively lucky with my symptoms. I was diagnosed in March 2011 (this year) after frequent trips to see GP’s who were treating me for allergic conjunctivitus. I have the feeling of fullness around the throat which can be so frustrating at times, bloated eyes, blurry vision, double vision, palpitations, energy boosts, extreme hunger pangs, bouts of tiredness, anger, amongst a few. The Endicronologist has advised surgery but has put me forward for RAI. Not understanding many terms and being new to this disease he told me my counts were abnormally high – in the 5000’s. What count that is I have no idea and stupidly didn’t ask. After my second appointment with the consultant he has started me on Carbimazole and propanolol. I have read some scary side effects to the Carbimazole and am now reluctant to carry on taking them. I am in the process of deciding whether to opt for RAI or surgery, but then don’t know if they want total or sub-total removal of the gland. There really is nowhere of help, or people to talk things through with, and I was really grateful to come across this site and read other sufferer’s stories. Good luck to you all.

    1. Simon Waters Post author

      There is help, see my UKthyroidinfo page for links to support groups. Most of the groups have telephone networks for support, the British Thyroid Foundation index their telephone contacts by condition (and treatment for Graves’) so you can find someone with Graves’, with eye problems who has had say surgery or RAI.

      If you were only diagnosed in March, I would persist with the Carbimazole unless you specifically experience side effects. The “scary” side effects of antithyroid drugs are exceedingly rare (of the order of 1 in 50 million prescriptions, so less likely than winning the lottery), the serious side effects of untreated, or under-treated Graves’ are all too common. The most common “side effect” of Carbimazole is being over-medicated so learn about hypothyroid symptoms and let your doctor know if you experience anything odd.

  35. Sonja Huckle

    The Carbimazole is apparently only short term whilst I decide which treatment I want to go with. They suggest surgery but are willing to let me try RAI. I’m still learning and thank you for the help and advice, very gratefully received.

  36. Michelle Brisby

    Hi simon. I’ve just finished reading your post and what a relief to find i’m not the only one having problems! My gp seems to have lost patience with me. I went along around 5 months ago, sweating, tired, headaches racing heart etc. Blood test was done and I was found to be toxic hyperthyroid (i think thats what he called it!) he put me on 50mg of carbimazole along with 160mg of propanalol for my heart rate (sitting at 150 bpm at rest!) and i’ve been on this ever since. I’ve been to see specialists at the hospital and have had a million blood tests. I was hoping the medication would help things. But instead it has given me headaches, dizzyness and severe mood swings. The first two I can live with but I was always such a happy go lucky person. Now on the medication I am horrible! I attempted an overdose last week and attacked my husband for no apparent reason 3 days ago, and doctors keep telling me to persevere as coming off means putting my health at risk (to me attempting suicide is a risk to my health??) Anyway after a very long and heated argument with my gp he finally decided to refer me for a complete thyroidectomy! He tells me it will sort my symptoms but he’s very anti surgery and has me terrified by the way he described it! I’m so lost! Any ideas what I should do? My husband and I are keen to have children in the future and he also told me as long as i’m on medication I cant have any, and that iodene treatment can reduce my fertility :-S basically he’s been as much help as an ashtray on a motorbike!

  37. Roxy

    Hello Simon

    I was diganosed april 2010 with Grave’s disease just before my 28 birthday I had been losing weight and getting worse for about 6 months previous after having a bad cold. I was rush to hospital in march 2010 where they said I had suspected appendisitis this was however wrong I spent 2 days in hospital with them scanning, giving me fluids and taking bloods. the only thing they didn’t do was a TFT test and sent me home with a pulse of 135 and palpitations. I went back to work and lucky I work in the NHS a doctor I work with asked me if I was ok as I didn’t look well I said I’d been in hospital and she said she thought I had graves disease by looking at the size of my eyes and neck! I had a blood test and my levels were 70++++ I spent 5 1/2 months off work for my levels to stablise. My consultant is not very helpful I am currently on block and replace therpay 40mg Carbimazole daily and 125mg of thyroxine daily. He says I will need my thyroid out and told me that the first time I met him when my emotions were all over the place. I want to try everything else first. I need my voice for my job I am concerned about the risks of surgery. I hate feeling like rubbish most of the time and then have really good days where I can do everything then the next day I can hardly move. My husband has been fantastic during all of this but it has affected our relationship but we are fighting against graves its not going to win. I am so frustrated that people think that once you are taking meds you are fine, well all my symptoms are still there work aren’t very helpful I am awaiting referral to a pain clinic for fatigue management to see if that can help. I feel like its controlling my whole life and I can see when it will end its like living in a nightmare you can’t wake up from. My life is on hold. Can n ot thing about starting a family etc. I have managed to contiune studying I started a foundation degree in jan 2010 the university weren’t helpful or supportive and also tried to throw me off the course I continued to fight and passed all my work without failing it. My two little dogs have been fantastic and really help me get up in the mornings. I feel Graves should be in the spotlight more its not something that needs to swept under the carpet. I just thought I’d let you know my story and thank you for sharing yours it lovely to know there are people facing the same situations and continuing with their lives! My message is ‘Dont let Graves beat you’

    thanks again


  38. Candi

    Hi, Thanks for telling your story. I have had Graves disease for 10 years now. I was told long ago to get RAI done, but was too afraid of the permanent part of the Hypo side. I was experiencing anxiety, panic attacks, racing heart rate, mood swings and sweating. I was put on Methimazole and was fine for years besides some Graves eye which happened in the beginning and got better with time. Over the years I started experiencing odd symptoms… such as horrible light sensitivity when I would go into grocery stores around fluorescent lighting. I was also getting more and more frequent headaches and sometimes flu blown migraines for months at a time. Then after I was put on PTU everything changed. I got horribly depressed and even more anxious. I started getting unreality symptoms that stayed every day for months. I was put on an antidepressant which I took years before… before I was diagnosed with GD, and this helped with the anxiety. My labs remained normal (TSH) while on the PTU. Once I got pregnant with my son everything went crazy. I was under a lot of stress because my mom passed away suddenly and my vision started doing weird stuff. I never got double vision per se… I got something called palinopsia. I would see a faint trail in my vision when cars would pass in front of me, or even people. I also saw halos around lights, objects and people. Now after having him it’s gotten way worse. I have increased afterimages, shaky vision and have flashing in my vision along with what I could call static resembling what you see on a tv screen. I have tried antidepressants for the anxiety and it makes the vision worse. I am opting to get my thyroid taken out as soon as I have the money.. .insurance here in the states will not pay for it. I had my labs checked and I am border hyper still while on the meds, but still in normal range. My antibodies however were over 1000 and I am thinking this might be what is causing the vision problems for me. Has anyone else ever experience any bizarre symptoms with their graves that isn’t really text book?

    I feel so alone in this and the feeling like I am not myself… I can’t stand it. I am praying that once I get the thyroid out I will be back to my old self 🙁

    Thank you for listening,

  39. Chantelle

    Hi Simon, thank you for sharing your story. My name’s Chantelle, I’m currently 17 years old. I was diagnosed with graves disease at 16 when I was taken to hospital with crazy heart pulpitations. And since then I’ve been on a roller coaster of carbimazole trying to get the right dosage. I’m having a lot of trouble coping with it all recently. I used to be an A+ student, loved school, loved sports and was always buzzing. Now, my grades have dropped, I’m unable to participate in sports and my moods are just killing me. I find it really hard to explain myself, because I just feel as though I’m constantly complaining. My relationship with my parents has become tense, with my friends is almost non existant. It’s ruining the relationship I have with my partner. I’m just not who I used to be anymore. Coming on here and reading everyones stories has made me feel a little less alone but still so confused. Is there anything at all I can do to change mentally? I don’t want to loose any more relationships in my last year of schooling- but everyone seems to have had enough. What can I do?
    My email is
    If anyone has any advice, please feel free to share it with me. Thanks

  40. PJ

    I am so releived I found this website full of sensible, helpful advice from intelligent, kind people. I too have been feeling like I’m going mad and after having Graves for several years, no doctor has made the link between physical and emotional problems caused by Graves. Candi, I too have strange eye symptoms. I can’t drive at night any more as I experience the same light trails and flashing from car headlights and a extremely bad night blindness. This has caused me to become quite the recluse and I can’t remember the last time I went out after dark alone. I’ve also had several episodes of blindness in one eye, mostly after a morning shower but once in a car park. During the blindness episodes there is a large black dot in the centre vision which takes 10 minutes to 30 minutes to disappear. The first time it happened I was taken to hospital, they couldn’t find a thing wrong, same the next time and was diagnosed with an occular migraine. Now I try and relax and take a pain killer until it’s gone, on the advice of the doctor. I find that it happens more often if I’m dehydrated or anxious. I get lots of little ‘light ghosts’ too, as I call them, when I shut my eyes and see an effect like one of those 70s bubble oil lamps. I stupidly decided myself to stop taking the Neomercazole for three weeks after the last test results came back pretty much normal. Bad idea. Although I didn’t see it until yesterday I’ve become very anxious, lost all my self esteem, haven’t been out for days, my eyes look very old and baggy, my brain is mush and I’m finding it hard to concentrate and am extremely tearful. The chronic depression is totally debilitating. Back on Neomercazole today, and this does sound mad but I’ve started thinking a little more positively and clearer already….. I think one of the worst things I’ve experienced with Graves is how reclusive it’s very easy to get and as some of you have mentioned, I’ll also be Wonderwoman one day then a cowering, confused person who can’t even answer the front door or phone. I’m not sure how my mood/abilities can change from one day to the next but clearly Graves needs more study as it’s spoiling many lives and relationships. I’ve found that Potassium and Magnesium tablets help with the physical (and therefore the mental/emotional) symptoms somewhat. I’m not sure why that is, I started taking them for calf cramps which went almost immediately after the first couple of doses. Balance has also been an issue, maybe because of the vision/perception changes and escalators and steep stairs are now quite terrifying and an impossibility – has anybody else experienced this? Also has anybody got any firm evidence that black mould is related to Graves? This is an issue that interests me greatly as some houses I’ve lived in were pretty mouldy and up until then I was well…. Good luck everyone.

    1. Simon Waters Post author

      I’m not aware of any evidence of moulds causing Graves’ disease directly.

      Possible if you have an allergy to a specific mould (typically the spores), or similar immune response, it could trigger an autoimmune disease.

      Much like Cedar pollen is implicated in Graves’ in Japan. Cedar pollen probably isn’t THE trigger for Graves’. but there is some evidence it may be a trigger in some, probably those who inherit a risk for Graves’ and are sensitive to Cedar pollen.

      Likewise some people with gluten intolerance have their thyroid issues resolve when they omit gluten from their diet.

      Mould covers a whole lot of organisms with a lot of different chemistry, and some household moulds do cause allergic reactions (as if slowly eating away at the fabric of your house isn’t bad enough).

  41. PJ

    Do you think it would be useful to start a ‘What Helps The Graves’ and ‘What Makes The Graves Worse’ section?

    1. Simon Waters Post author

      Maybe, till this point I’ve tended to the view that there is too much information around, and it is better to link to the stuff that already exists rather than expose my own ignorance, hence my “UK thyroid information” page.

  42. Shelly

    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.

  43. candi

    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

    I think its a migraine varient from the antibodies… But i am not sure.

    I hope to talk to you soon.


  44. 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 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.


  45. Lucy

    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

  46. kelly hewison

    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

  47. Wit B

    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!

    1. Simon Waters Post author

      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.

  48. Lynn

    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.

  49. Lorene Taylor

    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

    1. Walt

      My daughter was also diagnosed with Graves last January. Here is her story: : I am not sure that my overall condition was ever diagnosed until last January. I had been suffering many of the things related to this disease for many years, but never diagnosed, i.e., Graves Disease with Exophthalmos and Orbitopathy. Even after being diagnosed, It seems that only the condition of each eye is what was considered and not the overall condition. Especially, when using both eyes while walking and doing normal activities. It would be impossible for me to hold a job, even a part time job. Since this is a very rare form of Graves Disease, it needs clarification to better understand how the disease affects me, i.e., weight gain, high blood pressure, increase heart rate, deformed face, tiredness, headaches, double vision and the need for as many as eight operations to correct just the Orbitopathy part of the effects the disease has on my body. My double vision causes me to bump into things and miss steps – and while in public places, like going to doctor’s appointments, I need a guide to assist me. Since the first decompression operation, my vision has changed. The double vision continues, but the eye that was decompressed is positioned in a way the caused the vision to be crooked. So, while the double vision continues, the vision in one eye’s is also crooked. Trying to focus on an object is difficult and stressful leading to more severe headaches. So, I just look at blurry and off center objects and visualize what they look like if my eyes had normal vision. At times, I can read and see things better, but that doesn’t last long. At other times, I just have to close my eyes because I can’t see clear enough to enjoy what I am looking at. TV is heard for the most part and not seen.

      Because my eye lids don’t close all the way, I have to continuously use eye drops to moisturize and sooth the eyes. At night I have to use a different eye treatment that will last all night while I sleep. I go through two to three bottles of this expensive, eye moisturizer each week. Dr. prescribed the use of the over-the-counter moisturizers Thera Tears Lubrication eye drops during the day and Refresh P.M. lubricant eye ointment during the night. Both range between $16.77 and $20.00 per tube.

      Forgetting to blink, even though I use the moisturizers, causes my eyes water continuously as if I am crying causing me to go through from two to three boxes of Puff-with-lotion tissue boxes each day. If I don’t keep my eyes moisturized, I will lose my sight.

      Eye problems increase the severity of my headaches and the severe facial pain continues. I have been advised that the duration of this disease may take as many as 3 to 4 years to gain recovery. Furthermore, I may even lose my sight. Also, I am not to do physical exercise including taking walks.

      Dr. has addressed the physical effects of this disease only on my eyes separately, but when I use both eyes, I have the double and crooked vision. He hasn’t addressed my overall medical situation. Furthermore, my medical team hasn’t yet hasn’t yet presented nor discussed what is happening on the both the physical and disabling emotional side of my condition.

      While most of my treatment has recently been on correcting the bulging eyes, my overall condition continues to decline. On 11/13/13, my primary doctor said that my disease has morphed into another stage and that the pleminary diagnoses are Rheumatoid Arthritis and lung disease. I was then referred to a Hematologist/Oncologist, for Lung Disease and will see him on 12/6/13. I will also see a Rheumatologist. They will be able to support her diagnoses and treat me for these maladies.

      This phase of my disease has increased the pain I suffer each day. Not only can I not see well, I have severe joint pain. I fear that my decompression operation injured the nerve and that is causing me a lot of pain and it is so bad that I have to stay in bed with an ice pack on my face just to get through the day.

      This is not a nice disease and for me at age 35 to suffer so much is a shame – for anyone at any age to suffer from this disease is a shame.

  50. sharon

    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


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