My Graves

Simon’s Graves’ Disease

Introduction

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
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 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.

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.

Simon Waters

202 thoughts on “My Graves

  1. Jan Hale

    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

    Reply
  2. Leola

    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.

    Reply
  3. Leola

    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.

    Reply
  4. Tanya

    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

    Reply
    1. Tracey

      Hi Tanya.
      I was only diagnosed in Feb 2016 but totally understand how your feeling, reading your story is like a mirror image of my own. I was diagnosed with over active thyroid given carbimazole and beta blockers told specialist app at the hospital would be sent as urgent and that was that, still waiting for app and nothing has been explained to me as to what is going to happen. I lost a lot of weight at first and now in just a month have put the weight back on. I to don’t think loved ones and family really understand how you feel having this condition. I just wish Drs would explain what’s going to happen instead of saying yes it’s thyroid problems take these tablets and we will test blood in a month. I went back to GP on 5 occasions and it was only when I ended up in A/E with heart rate of 146 that they thought oh yes somethings not right here. Unfortunately I have ended up with TED because they kept telling me it was conjunctivitis . I understand the frustration and the feeling of loneliness with this condition.

      Reply
  5. Ruth

    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.

    Reply
  6. Gina

    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.

    Reply
    1. Amanda

      Hi Gina, I have had such a similar experience. It is heartening and depressing at the same time to hear others stories. How are you now? I was in remission for a year and a half, but I came out last month, and now I am on the roller coaster of getting the meds right and always feeling crummy. It’s so hard to explain to friends and family. My social life and career really suffers. Well anyway… thanks for sharing your story.

      Reply
  7. Jeanette Harding

    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.

    Reply
    1. Amanda

      Hi Jeanette, I’m sorry to hear about all your challenges. I also passed out in a grocery store and had (have) problems with panic now which I never had before my thyroid problems. It’s so terrible and hard to explain to people. How are you now? Did you have RAI? I have found acupuncture to be surprisingly helpful, but not a cure by any means. I hope things have gotten better!

      Reply
  8. Mark Jeffries

    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

    Reply
  9. brian

    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

    Reply
  10. joe

    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.

    Reply
  11. John

    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.

    🙁

    Reply
  12. Jayne

    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…

    Reply
  13. Sian

    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.

    Reply
    1. suziebee

      Hi , I hope you are feeling better now, I know how you feel , research as much as you can .keep annoying your gp , if you feel really bad, they will just let you feel that way for years if you dont tell them, I wish there was a magic pill to mend it but I think it’s about what levels are best for you , wish you all the best xxx

      Reply
  14. lorna brown

    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.

    Reply
  15. CP

    I was diagnosed with Graves a few months ago. Unlike others with Graves, I am very heavy. I went to an endocronologist who was beyond rude to me but he did prescribe 10mg tapizol daily and got my heart rate down with lopressor. I am no longer on lopressor. When my Grave’s did not respond as good as he wanted he suggested iodine radiation therapy. I have not done this. Instead, I have just continued with my regular doc on 10mg tapizol until I. Can find a new endocronologist who has some professional ethics. I also have a severe vitamin D deficiency (not sure if that is part of Graves or due to my age -42 yr femaole)

    I’m a single parent with no paternal involement. I have 1 child with chronic health issues, another who has personal issues and a 3rd who has acute medical issues. We are moving 2,000 miles away to start anew. The stress from my children’s health and this move has me over the edge. I know my Grave’s is feeding on all this stress because I am having nonstop bowel movements, my body aches and my muscles are just sooooo sore. I even went to the ER a few weeks back because I was having pain and numbness/tingling in my arms and legs and was scared I was having a heart attack.

    I need to destress…but that is easier said than done.

    Reply
    1. Jan

      Ask your doctor if you should see a neurologist for the numbness and tingling to rule out some other things.

      Just a suggestion.

      I have Grave’s too and many other things. It has derailed my life!

      Jan

      Reply
    2. Lori

      Hi CP:
      My name is Lori and I am 42 yrs old. I see a lot of similarities in our cases. I know this is an older post, but I am wondering if you went through RAI? I was medicine intolerant to Tapazole and there is another drug out there for Graves called PTU. It works well. I would not stay with an Endo who directed me to do anything. Instead, let him give u all the info so U can make an informed choice. I have been so ill for the past 5 yrs and I was a little size 6 prior to diagnosis. My eating habits did not change and I gained a good 50-60 lbs and am now a size 12. I don’t even care about the weight anymore, I just want to feel better. I had some awful Endocrinologists who basically said take this and don’t eat so much. I was mortified. I finally found Endo #5 and he is a wonderful man who explains everything in terms I can relate to. I am SO glad I shopped around because a few Endo’s did not listen to me when I told them the Tapazole was making me feel “off” and my thyroid panels were out of whack for 4 yrs. The last Endo I had told me she doubted I even had Graves. I was stunned, especially with thyroid numbers like mine and all of the symptoms. That is when I left her for #5. The first thing he did was a TPO antibody test and my numbers were sky high, proving at the very least that I did/do have Graves. A lot of Endo’s have entitlement issues and it really affect treatment of the patient. There is so much more that I could say, but please do let me know how you are after the last couple of years. Are you able to work? I was forced to medically retire and just getting out of bed, taking a shower and getting ready takes everything in me. By the time I get dressed, I am soaked in sweat and tend to bloat out even more. It’s a vicious cycle and never did I think at this age I would be so sick for so long. I recently started PTU and saw a Cardiologist. I am going in for a bone density test, thy found I was extremely Vit D deficient, and I have to start going to the medical office for B-12 injections. Since my labs have been off for so long, my newer Endo is having me give blood every 2 weeks. Good Luck!

      Reply
  16. gin

    Hi, i was diagnosed with graves in november after being rushed to hospital with chest pains i thought i was having a heart attack my heart wouldn’t calm down and i kept blacking out all the time. I have been taking carbizmol 20mg and my levels are now just back to normal, i am lot better but still dont feel right, if my levels are now normal why do i still feel this bad, i have a apt with the surgeon to take it out , i cant take any more , i want my life back , i have always thought there was somthing very wrong very over weight, moody thin fine hair bad skin, bad bowels , pains, just feeling unwell all the time iv have blood tests before always been ok until now. in one way im happy they have found out what is wrong, but i think its a long road to recovery, they have now done a scan on my liver and they want me to have a ct scan because parts of my liver dont look right. does any one no if there is any conection with the liver and graves ?I am getting my moneys worth out the nhs all at once haha

    Reply
  17. Judith Swallow

    I’ve been diagnosed with Graves for over 15 years. I was eventually treated with radioactive therapy after the Carbimazole wasn’t working. I still have symptoms, sometimes bad sometime OK. I find that if I just keep going, including riding my bike, the symptoms calm down to just background annoyance. Reading Simon’s experience has helped heaps as there are lots of symptoms such as headaches and insomnia that I hadn’t realised were down to the Graves as the medics don’t tell you. Like Simon, I’ve relapsed following the radioactive treatment, but have not been able to get medical help via my GP, even when I was off work for three months with a severe relapse! However, I’ve kept going and have continued to pursue my cycling, including racing at national level and have managed to successfully complete many long distance cycle rides (see http://www.judithswallow.wordpress). Having read other people’s experiences, I feel very lucky and privileged that I have managed to keep working and continue at full tilt (most of the time) a sport I love.

    Reply
  18. Flo

    Hi,
    I was diagnosed with hyperthyroidism and later told that it was Graves’ disease a year ago now and have been on Carbimazole (40 mg) and levothyroxine ever since. I’m used to having sometimes good days and sometimes really bad days. But lately I’ve gone through a spell of all bad days, depressed, anxious, tired… I’ve always been quite a sensitive person but nothing like the way I am now. I’m 18 years old and have just started my first year of university and have been finding literally everyday a struggle, I know that by now I should have gotten used to everything at university but I just haven’t. Everything sends me into panic mode which I know must be because of my condition, I’m constantly crying about everything especially related to my work and feeling nothing but guilt after giving everyone a hard time being this way. I just can’t cope with all of my work at university and the difficulty of my course, living at home and not being able to mix with people in my year either. It’s all becoming too much and I don’t know what to do with myself anymore, my motivation for doing anything has gone, I’m easily distracted… I’ve reached the end of my tether.

    I’m seeing my consultant in 2 weeks time, and will also be having a routine blood test before-hand checking my levels. I was just wondering did you feel better when all your thyroid hormone level test results came back as normal, or did you continue to feel unwell? I think my consultant is planning on taking me off the medication soon. 🙁

    Reply
  19. Greg

    Hi all
    I was diagnosed with hyperthyroidism in October 2009. The first symptoms were mainly anxiety based, especially when at work . I was always kinda a happy go lucky type of person but now my whole life has changed dramatically. I had many work and social friends but now have been off work for over 2 years with Graves disease therefore losing contact with friends etc. With my problems came the bulging eyes which is probably the worst but also throw in paranoia, insomnia dislike of crowded places etc. I see an endo every 6 months have also had many visits to eye specialists. I have been on block and replace for maybe 18 months taking 125 mcg eltroxin and 20mg neomercazole and dont feel too bad when at home but can get stressed when going out. I have missed 2 weddings because I dont have the confidence to talk to people that I once had. I have been recommended to have orbital decompression to get my eyes back to where they once were hopefully have also recently been put on anti-depressants. Not sure if and when I will ever feel “normal” again. Good luck all and bye for now.

    Reply
  20. ellie

    Hi,
    Many thanks to Simon for setting up this blog. There seems to be little in the way of support groups for graves patient and as I do not know anyone who has this .

    I first had graves in 2000 for 2 years, this came back in 2007, and 1 month after going into remission again , was diagnosed with breast cancer in March 2009 – I fortunately had a treatable type – and I am waiting for my 3 year check now with fingers crossed. My Graves has now come back with a bit of a vengance last October, my T4 hit 75 and had to be hospitalised. I was due to have RAI this week, but couldnt face having my body rocked again ( still taking cancer meds), and my eyes are really sore . I am hoping I can achieve remission again and as I am now 45, that it may not come back ! I Any positive stories from RAI or anyone still living with graves, would be great. Please feel fee to email me at ellie@baxendale.org.

    Reply
  21. Samantha Bown

    I thought I was going through he menopause, feeling hot all the time and other symptoms which you can get from the menopause. So that is why I saw my doctor initially.
    A blood test soon revealed I was had a very hyperthyroid and 20mg Carbimazole was prescribed along with betablockers.
    We have tried to reduce the amount of Carbimazole and hoped for remission but 12 months down the line I still need the 20mg.
    Now my doctor has suggested the RAI drink. At first I was up for it, but on reflection I have replied saying ‘No thank you”
    I dont want surgery either.
    I want to know if I can stay ‘hyper’ – I don’t have any eye problems or any goitre (a scan last year showed there to be very little enlargement)
    I haven’t had a sore throat or cold (which I understand Carbimazole to possibly add problems)
    I dont want to be ‘Hypo’ for the rest of my life – and the weight gain possibilities associated with that are a particular worry.
    If I do insist on just staying on Carbimazole my question is – What are the problems I should be on the lookout for?
    When I forget to take the tablets, my sleep is affected ie No sleep til about 4am!
    What sleep aid tablet do other Hyper sufferers take and can take safely with Carbimazole.
    Your thoughts and suggestions greatly appreciated.

    Reply
  22. nikki s

    Hi fellow GD/TED suffers! I got diagnosed in July 2011 having had all classic symptoms probably since May/June noticeably, so diagnosed very quickly. My GP put me on 15mg CBZ straight away, then he increased it to 30mg during August as I was still quite breathless/tachycardic & weak, wasted muscles. TED symptoms of puffy eyes (looking like a bull frog with a bad botox job?!?!!!) arrived early September. Finally got my appt. with the Endo for mid Oct who put me on block 40mg CBZ & then replace with 25mcg Levothyroxine 2 weeks after starting this….increased thyroxine to 5omcg after a couple of weeks as I was feeling a little lethargic to say the least!! Has MRI scan on eyes Oct too & then had 1st session of methylatedprednisolone IV drug infusion last week in November to suppress anti-bodies attacking eye muscles.

    Well moving on now to mid December…I was a jibbering, snivelling, depressed, double visioned, Hypothyroid moon faced wreck of a woman, literally on the floor of the GP’s with it all just wanting it to all STOP!!

    Update now Feb 2012 – I have now seen the Eye clinic Docs = all ok, not too bad at all & met with the best vascular surgeon we have here in West Sussex and he is lovely! I’m not in any hurry to have a thyroidectomy yet as I want to see if it can burn out on medication, interestingly he told me that no-one should stay on CBZ longterm as it messes with bone marrow & was anyone else told my their GP or Endo that they would be kept on these drugs for just 6months and then stopped to see if they had reached remission??? No, me neither!

    Have just had more blood tests to see where my levels are at as not only do I feel quite Hypo I also have dizzy/lightheaded feeling since Jan so am thinking blood disorder/pernicious anaemia now, with a drop of vitiligo for good measure added to the list of auto-immune diseases!

    Oh happy days! chins up, we WILL get better girls and boys 🙂 xx

    Reply
  23. nikki s

    p.s. at least I get a better nights sleep now I have Lacri-lube (artificial tears) to stick my eyes together and stop tearing at night…highly recommend that 😉

    Reply
  24. Rebecca Turner

    Hi,

    I went to see my Gp due to on going concerns about my weight. I’ve always been heavy and have been able to lose weight but always put it back on. I eat lots and lots which explains the gain. My GP is beyond excellent and tested my thyroid, which came back hyper…. I had expected (as had my GP) hypo. She referred me for an ultra sound scan of my thyroid which showed nothing sinister. But another blood test has been suggestive of Graves.

    I had brain surgery in march 2011 after a diagnosis of a brain tumour in 2010. I have always had headaches…. Understandably they have been worse 10/11. But they continue as do mood swings and my in ability to deal with stress. I don’t think it helps that I am a mental health nurse. I am due to see an endocrinologist on weds but I feel some what scared!

    I am I only just getting my life bk on track after my brain tumour and epilepsy diagnosis (related to BT) ahhhh am only 32! X x

    Reply
  25. Deborah

    Hi Simon, and everyone else.
    I don’t have Graves but my boyfriend was diagnosed just over a year ago, same thing as you, eating like a horse but losing weight. The doctors want to remove his thyroid as he hasn’t improved over the last year and is now hypothyroid, also has the eye problem. I was researching gluton intolerance for a friend and came up with some interesting stuff. It appears that a lot of people with Graves/thyroid disorders are also showing an intolerance to gluten. I’d be interested if people who have replied to you have also found this ( I did see one reply that said it was the case)
    My bloke tried cutting out gluten and felt somewhat better, give him some bread and he feels awful. Now, according to the net (and I appreciate you need to take everything on the net with a pinch of salt!) gluten looks like thyroid cells to your body. If this is the case a gluten intolerance could kick start your immune system to attack anything that appears to be gluten. In other words, your immune system is attacking your thyoid because it thinks it’s gluten.
    Now, here’s another interesting thing. Research a little deeper and you will see that Candida (a yeast overrun which can occur with stress or certain medicines like anti biotics) can also cause thyroid problems.
    Candida is responsible for a huge array of illnesses, many of them auto immune and very often to do with the thyroid. The human body should be more alkaline than acid, candida yeast produces acid and alcohol which the body in an effort to save itself stores in fat cells, it also stops nutrients getting into your bloodstream.
    Now, I’m not sure if gluten intolerance has anything to do with Candida but they do have similar “cures” and a lot of symptoms in common.
    So, we’re going to approach this from Candida up, cutting out complex carbs, introducing pro biotics, Caprylic Acid, Black Walnut and castor oil caps. We’ll also introduce an alkaline drink (1 tsp of bicarbonate of soda with a spoonful of lemon juice in a glass of water) once or twice a day to see if there’s any improvement in his Graves.
    Sorry to have waffled on but Graves is such a horrible thing and doctors don’t really know what starts if off which makes me a little skeptical of their “cut out the thyroid” attitude. I also dislike the immune suppressant drugs that you have to take. Hoping that this makes some difference, if you’re interested I’ll let you know how it goes.

    Reply
    1. Simon Waters Post author

      There are a couple of blood test to confirm gluten issues (anti-endomysium antibodies being the common one).

      They are not conclusive, and the results (like mine) can be borderline, but it can help get doctors to believe you. And yes there is a clear link between gluten intolerance and Graves’ in about 2% of Graves’ patients. Be aware the next step might involve a camera being shoved…. well you can figure it out.

      The only sensible treatment for gluten intolerance is avoidance of dietary gluten, this is REALLY hard to do. I had a friend who was really consciencious and suffered badly when she got it wrong, but she’d still end up consuming gluten once every couple of months or so by mistake. So you want to be reasonably certain this course of action will help, and get professional advice on the diet, as it is a tough one. On the upside it might be a route to a cure for the Graves’ so worth persuing, and likely he’ll feel better even if it doesn’t help the Graves’.

      Candida overgrowth, one of those tricky ones. It definitely exists and causes medical problems, but it has been latched onto by the loony fringe as the cause of everything, so it is really hard to get good clear information except from the peer reviewed medical literature, since the web if full of lunatic nonsense on the topic. I basically gave up on trying to understand this topic after convincing myself most of the stuff I’d read was complete rubbish (and I try hard to understand this sort of stuff). Again I would say if you suspect it ask a GP, but don’t be surprised if he brushes it aside with a slightly bemused expression.

      Reply
      1. Jan

        The gluten issue is just as over used as candida as a causative for anything that ails you, probably more these days that the yeast. Remember that on the web, only use reputable sites for information. Simon is right when he says that so much of what you read is rubbish. One thing to remember also, is that when you have one autoimmune disorder (which Grave’s Disease is), you are more prone to getting other autoimmune disorders. I also have Crohn’s Disease.
        My major presenting symptoms for Grave’s Disease were severe clinical depression (so everybody thought I was crazy including the doctors!) and dramatic weight loss (60 lbs). It took 1-1/2 years to be diagnosed and I worked for a physician and had access to the top specialists in this city. I asked one doctor for a thyroid test and she actually refused to do it. I had an extremely severe tremor in my whole body and my voice was tremulous as well.
        I can’t even talk about it all now, too long a story and just too upsetting to tell.
        Please feel free to contact me jzarowny@shaw.ca

        Jan

        Reply
  26. N O'Brien

    Hi there, I was diagnosed 10 years ago. I’ve been on neomercazole from the start. They tried everything including block and replace. Medical staff are now trying to get me to take the radioactive iodine but I don’t want to hear about it. Simon have the doctors ever offered this option to you ? I’ve been on 5 mg neomercazole for the last 2 years I think and slowly but surely going underactive (last tests showed subclinical hypothyroidism). Very annoying disease ! Best of luck anyway. enjoyed reading your blog.

    Reply
    1. Simon Waters Post author

      My endocrinologist has said I can have radioactive Iodine any time I want it, however the offer was accompanied with comments to the effect that it not clear I’d end up feeling better afterwards. Nice to have the option but whilst the drugs are working I’ll stick with them.

      Reply
  27. Lin Miller

    Hi – thank you Simon and everyone who has commented. I was diagnosed with hyperthryoidism last May after I had lost three stone in weight, constant bad tummy, sweating and all the usual – and was amazed that the thyroid causes so many problems, I felt so ill at the time, I was sure I had cancer . So I was relieved to get this diagnosis. Since then I’ve been on Carbimazole 20mg, but was recently diagnosed with Graves Disease which is also affecting my eyes. I’ve had sore eyes for a long time but suddenly they are so much worse. It’s the main thing that’s affecting me now – I’m so worried about my sight and as I am disabled and rely on my car, you can imagine I’m scared that my vision might deteriorate.

    My consultant recently asked me to take part in a trial to see if radiotherapy, medication or a combination of both, or none, would improve the condition. It’s called CIRTED – a triple blind trial where I could end up having both treatments, one or none as placebo is used as well. I am in a total quandary about this. Apparently you have to take steroids first, a large dose for a few weeks – and as I have already put on loads of weight due to being on Carbimazole, I am worried sick. I’m on block and replace now also.

    Has anyone else been offered steroids, radiotherapy and/or medication for the eye condition, or been asked to do the research trials? I would love some advice. Nobody in my family or among my friends has a clue about how serious Graves is, or any idea about how awful it makes you feel. I feel pretty much wasted all the time, am struggling to do a degre course part time, and as a mature lady with arthritis, am struggling to cope with pain levels. I do get depressed and frustrated and quite lonely as my social life has dropped to zero. I live alone and seem to be unable to socialise as I used to.

    Would love to hear how other people cope. .

    Reply
    1. Simon Waters Post author

      Hi Lin,

      suggest you check out the TED group for others with similar experiences.

      My GP jocularly suggests that you always want to be enrolled in clinical trials because it means you get your case assessed by the leading experts, and if you have complications they’ll be checked carefully to establish if they are a result of treatment received on the trial. Obviously dealing with serious conditions you need to see if the protocol fits your life, and be confident you won’t miss out on known effective treatments, but these items have usually been considered by the ethics committee.

      I haven’t been enrolled in clinical trials, Graves’ disease usually gets one excluded from non-Graves’ related trials. I have enrolled my son in vaccine trials because I have confidence in the procedures behind clinical trials in the UK, and the result as my doctor suggests has been better medical care for him.

      Reply
      1. Lin Miller

        Thank you Simon for your thoughtful reply. Well, since I wrote that I have had radiation therapy on my eyes, twelve days of it – and let me tell you, it was very tiring!! Towards the end of it I was falling asleep sitting down -something I never do. Now, two months later, my double vision is much better but I still get swelling and the incessant watering which is such a nuisance.

        So it’s good and bad.

        My thyroid seems stable with the block and replace. But I feel so rotten all the time – so tired, worn out, as if I have no energy at all. I get quite low, and sadly, feel that life has changed so much for me in terms of how I look and energy levels that I sometimes just don’t want to wake up. Thankfully my family keep me going, I have amazing sons and wonderful grandchildren although I am sad that I just don’t have the energy to do as much as I’d like with them.

        My thyroid consultant wants to do the surgery soon and I am in a quandary about this – as the block and replace keeps the worst symptoms at bay.

        One of my biggest worries is the weight gain. I’m on steroids and immune suppressants and have put on over three stone now. My neck and face are so fat, I can’t recognise myself! With the sore eyes, I despair because my once attractive face is unrecognisable. Please tell me I’m not being silly for being so upset about this. It seems so shallow yet I have lost my identity, it seems.

        Is there light at the end of the tunnel?

        Reply
  28. Tina Watkins

    Hello Simon
    I have a question. I was diagnosed with over active thyroid in 2010 & Graves disease in early 2011. I have mild Graves disease in my eyes and severe Graves on my lower legs resulting in a diagnosis of pre-tibial myxedema which has latterly been kept under control with steroid cream. I have been on high dozes Carbimozole since July 2010. Two weeks ago I had my thyroid removed and I immediately noticed a physical difference to how I felt, in my eyes and initially on my legs. My legs looked more like my shape legs and clearer. However the past two days my legs have become red and itchy again.
    I have found your blog and read some of the stories but cannot identify anyone with Graves disease on the legs. Do you know anyone who has this (I am told it is a very rare condition) and if you do can they be put in touch with me. I am desperate to find a cure for this. I am under a dermatologist but as it’ s so rare I feel he is as much in the dark as I and others seem to be. He had hoped once I’d had the operation to remove my thyroid the graves would improve. It has in the eyes but now disappointingly I feel not on my legs.
    Please can you or anyone help?
    Tina Watkins

    Reply
    1. Simon Waters Post author

      I’ve met a few people with problematic pre-tibial myxedema. Probably best to try the forums mentioned on my UK thyroid information page to find fellow sufferers.

      There was some research going on in Brighton hospital with octreotide for thyroid dermopathy, but others have had no success with the drug, so likely to be relegated to the last resort treatment.

      Otherwise I understand the standard treatment is topical steriods, with steroid injections if that doesn’t work. So yes there are dermatologists with some experience, but haven’t heard of any great advances in treatment. Of course if anyone knows better please leave a note.

      Reply
  29. Tina Watkins

    Hi Simon & all who read this. I commented very briefly last night as I was seeking some advice about Graves on my legs.
    I have continued today reading other people’s experiences of Hyperthyroid & the association with GD.
    I’d like to share my story & hope it helps/informs others.
    A potted history first – sexual & physical abuse as a child. Tonsillectomy age 19. Depression in my 30’s. Diagnosed Hypothyroid also I’m my 30’s. On Eltroxin for three tears with a new GP saying didn’t need it anymore so without further ado or suggestion of regular blood tests took me off it. Severe migraine sufferer since having my children early 70’s. Imigram eventually prescribed. Phew!! Terrible hive rash all over my body when pregnant.
    Ok here’s the recent history – Jan 2010 started noticing my hands shook when I was writing. Palpitations. Noticed loss of weight in photos & thinning hair crown of my head, insomnia ( this had been going on for a long time), not being able to get up from floor without toppling over & had to heave myself up, heavy legs climbing stairs walking difficult. As time went on going to the loo several times a day & terrible wind, itchy skin & increased migraines that seem to come on more quickly & started at back of the head.
    Did zi go to the GP – no!!!! You may ask why not? Well Imput each & every symptom down to other things – shakiness & migraines to stress – I was going through a particularly stressful time in my life & I felt traumatised by an event which had me doing a lot of sobbing. I remember a. Lose friend saying “what’s this going to do to your body”. I thought the thinness in face I was seeing in photos was just me taking on my father’s physic as he got older, loss of hair again stress but concern I was going to end up like my mother who totally lost her hair in her 30’s, swollen ankle – drat – down to age and so it went on always a reason for everything & hey I thought how can I tell a GP about all these symptoms he’d think I was a hyperchondriac.
    Things however got so bad the same friend having been on holiday together & seeing my struggle encouraged me to go to GP & within three weeks he had me seeing a consultant & the rest is obvious. GP later told me my pulse rate was dangerously high. I had carbimazole initially 20ml eventually rising to 40ml & propanalol latterly pre-op to 60ml. Obvious symptoms of GD – eyes & lower legs showed up early 2011 as I mentioned last night. No one identified the legs as it is so rare so initially I was being treated for skin infection. The zgD on my legs is lower redness itchy & front of legs looks waxy & rather like orsnge peel – not a good look – I’ve always had a good shape leg & feet even being told zi could have been a foot model – not now!!! Eyes began to bulge but since having surgery two weeks ago I have already seen an improvement.
    Why did I have surgery rather than RAI? My consultant categorically said if I have RAI it it could make my eyes worse. Indeed I know someone this has happened to. I did my research & opted for surgery – sob total thyrectomy. Initially it was to be full but the surgeon felt to safeguard damage to the vocal chords – I am in a choir – he would leave 5-10% in.
    How do I feel? Initially within two days great. I still feel so very much better but a week after surgery my legs have got worse hence my call for help/advice last night. I am still pleased I had surgery as all other symptoms have gone.
    I read others experiences of RAI & often notice not mant folk are being told the risks to eyes getting worse so I hope my experience & advice from my consultant helps others in making there decision.
    I am interestedctobhearvabout diet & I am resolved to check this out & may even ask to see a nutritionist.
    Sorry it’s a long comment – I could say more but thank you to all who have opened discussion to the problems encountered, the hopes & positive comments help too. I wish I’d seen it sooner.
    Tina Watkins.

    Reply
  30. Tina Watkins

    Thank you Simon for your first response that came through as I was writing my epic!!!
    Tina Watkins

    Reply
  31. Nadine Veitch

    Hi Simon and everyone,
    I have suffered from Graves for almost two years now and was diagnosed after being hospitalised with a heart rate of 170. My hospital and doctors have been amazing and have kept a close eye on me over the last two years through the depression, raised heart rate, muscle cramps, hair loss, stomach problems, heat intolerance, weight gain, shaky hands, insommnia, exhaustion, lack of concentration and all the other things we are all suffering from. I have recently requested from the hospital that I stop the block and replace treatment as I was becoming concerned about being on carbimazole long term and have been stable for around two months now.

    I have been trying to find out if I had a trigger which started the Graves off which I can avoid until I know that I am stable and wondered if anyone else has been able to identify their own trigger. I was doing the Cambridge Diet at the time I was hospitalised and thought maybe an ingredient in this may have caused the problem. One doctor suggested aspartine overload can contribute or a stressful episode, but I didn’t have any of these at the time.

    I would be really grateful to anyone with any suggestions and would like to say thanks to Simon for starting this page which I have been regularly checking and take real comfort from knowing that we are not alone.

    Nadine

    Reply
    1. Jan

      Nadine, often there is thyroid disease in family somewhere along the line so we can have a familial predisposition to this. There is a lot of thyroid disease on my dad’s side of the family.

      Jan

      Reply
  32. Lin Miller

    Hi – Simon, I didn’t take part in the trials, after all, as I’m not able to go on the very high dose of steroids needed. Thank goodness as it got me out of having to make a decision. The eye specialists, I saw three in all last week, have put me on steroids and azathioprine, this should help the eye problem. I have to see them again this week to see how it’s going. I’ve been very miserable and moody and wondered if anyone else is on these drugs, and how they feel.

    To the person who mentioned the eye disease in relation to RAI – I’ve noticed quite a few websites say that if you have the RAI it can increase the eye problems, plus my consultant told me this also. The eye disease also usually arrives after the thyroid has settled down a bit – which seems true for me . I don’t have the leg thing but it sounds awful and I feel for anyone who is dealing with that as well as everything else. . Good luck to everyone who is living with Graves, it’s not easy.

    Reply
  33. Kat

    Hi Simon, GREAT blog idea! I’m delighted to have stumbled across it on one of my many late night Grave induced insomnia states. :o) I’d be really interested to know if you think having the surgery was worth it in any way? Do you feel better when you’re slightly hyper or slightly hypo?

    Gina I hope you still visit this site and I know you posted your comment months ago and fingers crossed your doctors have managed to get your doses right since. Panic attacks along with feeling like I’m going slightly mad have been my main issue with Grave’s disease. If you are STILL having these symptoms you need a higher dose of beta blockers. The beta blockers aren’t just prescribed for irregular heart beats and palpitations they are also extremely effective on the psychosis symptoms of graves, eg: anxiety, depression, stress… I wish I knew why but unfortunately my doctors don’t seem to know. I do KNOW that it works though that I can promise you. My opinion is that the anxiety is linked to surpressed TSH because my anxiety symptoms only ever occur when my t4’s are normal and my doctors think I should be feeling wonderful even though my TSH is still at nothing. :-/

    I was diognosed with Graves disease when I was 14yrs old. I had been ill for at least 3yrs before that and it took near death and a chance encounter with a stand in GP for me to finally be diognosed. My childhood GP after suggesting all sorts of total nonsense stated that I had simply given up on life!

    The hardest part for me was being told there was no cure. And then finding out the suggested treatment would just make me as I always said back-to-front sick. After being left untreated for so long there was never any hope that I would go into remission. The only reason I have never had the surgery is because I was told I’d have to wait until I was 21 and finished growing completely. I still don’t know why this was but needless to say when I was 19 I suffered a Thyroid storm. It wasn’t as servere as it could have been and I left the hospital a week later. A few months of feeling very ill followed as my doctors preped me for the surgery. Then one day I just decided to ignore feeling ill. I don’t mean stop taking my medication or anything foolish like that I mean I refused to allow feeling ill to stop me getting through my days. I was 19yrs old and was tired of feeling several decades older! I took up dancing as an excercise method. (usful for all the extra energy and stress) and started enjoying my life again. I started listening to my body, recognising symptoms of being hyper or hypo and ajusting my medication accordingly. I’ve had some hit and miss moments but regular blood tests kept me well monitored and I had been as healthy as I could ever hope to be from that day up until recently when I was unlucky enough to contract the Flu. All infections play havoc with Grave’s disease symptoms so I have to start at the beginning again unfortunately. At 23 I became pregnant with my daughter. Some very scary moments followed as test after test was carried out but amazingly by the time I was 3months pregnant my Thyroid functions had completely normalized. Through-out my pregnancy I was as healthy as an ox. About 4 months after my daughter was born the Graves came back and I was back on the Carbimazole again.
    Right now I’m feeling very ill BUT I have the added advantage of knowing I won’t always feel this bad. I’m almost 29 now. 15yrs of medications and set backs and new scary symptoms have taken their toll and of course there is still always talk of surgery with my doctors. I just don’t see the point of a surgery that cannot cure me. It also can’t garentee I’ll feel better or well. Those are my personal feelings on the matter. It has been suggested that my body has become accostumed the hyperthyroidism and that is why I feel well most of the time. Its possible. All I know is feeling well when having Graves disease is possible.

    I have never heard of the block and replace treatment a few of you have mentioned and am very interested to know more. I’m usually only prescribed Carbinazole sometimes beta blockers (such as now) when I get anxiety and panic attacks. I have been lucky to never suffer from the headaches of Graves though I’ve had my fair share of symptoms. I do have the eye disease though. I used my teenage years to their full advantage and let loose all of my mood swings, sudden anger and upset. It is traumatic being told you have a disease that one way or another you will have to deal with for the rest of your life. I have to say the moodiness and extremes of emotion seem to have passed for me. Either that or everyones just too afraid to tell me I’m being horrible!

    Hope my story helps and thanks to everyone who has shared theirs!

    Reply
    1. Lin Miller

      Hi Kat – your story is very positive and I love it that you haven’t given in to this awful illness.

      Block and replace is when they give you a high dose of Carbimozole, this stops the thyroid working and producing the hormone that causes so many distressing symptoms such as fast heart beat. They have to replace the hormone, thyroxine, otherwise you would go hypo – that is, an under active thyroid, and that brings other problems

      However, it’s not a situation that can continue too long as high doses of Carbimazole have side effects which can seriously impact on your health, including liver damage and low white blood count, I believe. So the alternative is surgery to remove part or all of the thyroid gland.

      I don’t know if that works. I thought that once I was on block and replace all my symptoms would go – but I still get the sweats, intolerance to heat, fast heart beat at times, ,fatigue – not sure what is due to medication and what is due to Graves though.

      Anyway, I am going to take a leaf out of your book and try to be more positive as I have been feeling very low indeed. Thank you and I hope you keep well xx

      Reply
  34. karen

    hi i was dignosed with an overactive thyroid in dec 2011 i had symptons for about 3yrs but it really told on me in may last year my menstral cycle is nill been like tht for almost 3yrs now my heart racing fast then palpatations then slowing down so slow think its going to stop i had sweets joint pain tiredness would just sit down in fall asleep a do feeling every plulse in my body my left ear thumped with my heartbeat 24hrs a day nightmare i noticed my eye becoming larger than the other one the puffyness above and under the eyes got bad felt dissiness loss of memory in some thgs just couldnt thk normally i had been at hosp a num of times told them i knew somethg was wrong with me but didnt know what a felt like crap all the time a lost 3stone in weight over 2mnths looked terrible felt it to they listened to my heart few seconnds says it was fine sent home following week bk in and the same again had enough untill i got this 1 doctor who noticed right away when she saw me my finger nails were comming off she kept me in hospital and i was started on proprandol n carbimazole straight away steriods drip every week for 8wks were giving for my eyes as it was in them as well after 2 wks a felt great then 4mnths later the thyroid had gone from overactive to very underactive body was acking wonted to sleep all the time again syptoms comming back heartbeat going all over the place eyes bulging face swelt up puffiness again felt like crap they told me to stop all tablets that day i started steriod drip for eyes i had my 3rd dose today slight shaken in the hands over last 2 days they now told me to take my tablets again from today i feel like am banging my head against a wall ive been refer for surg to remove it all is this the best to do i hate this like all off us here its ruined my life a dont wont to go out as people look at my eyes in the weight losss in all i hear is people saying i look terrible its getting me really down losing confidence with everythg x

    Reply
  35. Jo

    What can I say but ‘thank you’!
    My 17 year old daughter was diagnosed in jan this year after random ailments popping up over the last 4 months of 2011, since then it’s been a living hell for both of us, she is on block and replace and after failed attempts of introducing thyroxine we have just had the letter from her endocrinologist to say she is deffo now ready for a lower dose of thyroxine although he is now testing for RA and lupus too because of other symptoms that are popping up.. I cannot believe the change in my happy go lucky daughter from 1 year ago to now where she spends a lot of the time in tears, with some kind of pain or just generally feeling ill and there’s nothing I can do except tell her to take her tablets, it’s heartbreaking to see her the way she is but this blog and all your stories of living with graves has given me a little bit of hope that things might get better.. Even if the othe tests come back with bad news I know there are places I can look and feel a little bit of support from even if it’s not someone telling me she will get better..
    You are all amazing people living with this awful disease that affects so much of your life I truly hope you all get the graves under control and have a happy life
    Xx

    Reply
  36. Leanne moss

    Wanting your opinion.

    Was diagnosed with graves dec 10. Usual symptoms, hair loss, sweats, shakes, palpitations, weight loss, frequent bowel movement, insomnia etc. endo put me on ptu. Developed thyroid eye disease may 11. Was put on prednisilone, but dosage was not working so started methyl prednisilone in dec 11, and still receiving treatment fortnightly. Eyes seemed to have settled down from treatment and I have my thyroid checked at hospital. Now 2 and half weeks ago my t4 and tsh was apparently normal. Can I just add I have been on ptu now since dec 10. And have been on 50mg a day for quite some time. But over the past few months I have put on over a stone. I eat healthy exercise every day. Yet I am still gaining weight. Over the past few weeks my alopecia has returned, I am cold all the time, joints aching, headaches, always tired. I can’t get hold of my specialist, this is why I am turning to you. Do you think I have gone under active? It’s the only explanation I can think of for all my symptoms. I appreciate your advice.

    Reply
    1. nikki s

      Yes I think you have gone slightly underactive hun….my last blood test of 1st May 2012 showed TSH=2.5 & T4=10…..these are within normal range….I am now on 5mg of carbimazole only, my eyes are really quite bad and my goitre is pressing on my larynx so I’m calling the surgeon tomorrow!!….you can only do what is right for you, no-ones case is the same, I feel your pain & frustration but keep on at them and get what you deserve 🙂 xx

      Reply
      1. Timmy

        This is exactly the same situation I’m in. My goitre is now pressing on my larynx and compromising my breathing. Was diagnosed July 2011 after almost ceaseless diarrhoea, tremor, rapid weight loss, insomnia, palpitations, in short the full works of classic hyperthyroidism/thyrotoxicosis. My wonderful GP promptly called the ambulance and sent me to the local hospital as i almost passed-out in her office.
        The thing is my endocrinologist seem very gong-ho and inaccessible to reach. I have booked a GP appointment to discuss surgery and my thyroid eye disease. I hate this incurable disease.

        Reply
  37. Ann Fisher

    I have just had a call from my doctor confirming I have graves, I went to the doctors last week with terrible headaches, blood tests were taken, and the result is Graves. I have just read what the systems are and I have most of them! I thought it was my age, (49).
    So tomorrow I am going to the doctors first thing in the morning and he is going to tell me what my options are. One hour ago I had never heard of Graves disease.

    Reply
  38. Anne

    Hi
    I have read these comments and cried. It is hard to explain to someone how awful and desperate you feel but to read that others feel as I do gives me some crumb of comfort. I am in my third episode of Hyperthyroidism, Graves, and am in a mess.
    I have been off work for the last two months, I had a thyroid storm which I believe was triggered by having a Yellow Fever innoculation. Its funny, people on here talk about the headaches, the crushing, ‘helmet style’ headaches, but when you mention it to the medical profession they don’t associate it with the disease at all???
    I am currently on carbimazole and beta blockers, but the symptoms are still there and my levels are still rising. I am considering the Radiotherapy treatment and am seeing my consultant next week. Reading here though I’m not sure whether I’d be better to have surgery?? and I read that it’s possible for it to reccurr afterwards?? I had assumed that if your thyroid is removed/ killed off, you would just be put onto thyroxin and that would be it??
    Any advice re surgery v radiotherapy treatment?

    Reply
  39. Kay

    Hi,
    I was diagnosed with Graves disease 2 years ago but thankfully am currently in remission, although it is early days as I am less than 1 year off treatment.
    Leanne – it sounds from your symptoms as if you might be under active, if you can’t get hold of your specialist then maybe speak to your GP and see if they will do a blood test for you?
    Anne – my opinion, for what it is worth, is to consider the radioactive iodine treatment; I suspect that this is what I will choose if I relapse. There is a small failure rate but most people become under active within 6 months and go onto thyroxine. The only other down side of the radiation is that you have to be prepared for a few weeks/months of not feeling great whilst you get on the right dose of thyroxine, but this won’t last forever.
    The advantage of surgery seems to be that you can go straight onto thyroxine and you avoid the potential of feeling rubbish with under active symptoms until your thyroxine dose is right. But it does have more risks (albeit small) of damaging your parathyroid glands which messes up your calcium metabolism and damage to the nerves that supply your voice box (which is irreversible and potentially serious). If I do ever have to have surgery for whatever reason though, I will definitely opt for a total thyroidectomy rather than subtotal as at least with a total thyroidectomy there is no chance of going overactive again (short of being on too much thyroxine).
    I appreciate that once you have had either treatment you are substituting one chronic illness for another, as you will need to be on thyroxine for life, but it seems easier to control levels on thyroxine than it can be on anti-thyroid drugs, and personally I would rather try and manage on thyroxine (I have a number of friends who feel very well on thyroxine) than put up with the side effects that I had from long term carbimazole.
    Good luck to you all, hope you start feeling well soon.

    Reply
    1. Emma

      Hi there,
      What side effects did you have from long term carbimazole? How long were you on it?
      I’m in a rush – again – but would really like to know as I am trying to weigh up my options. Am hoping for total remission – do you know of have you heard of anyone who has? My info below, made in a post a coupls of days ago so I won’t repeat it all again! I’m struggling really at the mo to come to terms with the fact I’ve got his for life! This forum is helping. Thanks, Emma

      Reply
      1. Kay

        Hi Emma,
        I had quite severe headaches with carbimazole; I get headaches anyway but they were really severe within 2 days of starting 15mg daily and resolved once I reduced to 5mg daily. Thankfully I only needed a really low maintenance dose (5mg alternate days) so could have been a lot worse I guess.
        Anyway, am due bloods again this month so am hoping I am still in remission…

        Reply
        1. Kay

          Hi Emma,
          Just to answer your other questions (I wrote the above answer in a bit of a rush), I was on carbimazole for 1 year.
          I do know of people who have achieved long term remission but my understanding is if that happens it is after the first course of antithyroid drugs. I think once you have relapsed once you are not likely at all to achieve permanent remission and either need to accept long term antithyroid drugs or have definitive treatment with radioactive iodine or surgery.
          Hope that helps.

          Reply
  40. Anne

    Wow, so much information…! I (35, female, hyperthyroidism since 15 March 2012) have two questions:
    1. Are the headaches a symptom of Graves or a consequence of the overactive thyroid? My endocrinologist said the headaches that I’d been having for months (no other symptoms until I suddenly crashed with all the other classic symptoms) weren’t a common symptom.
    2. How were you all diagnosed with Graves? My endo said it cannot be diagnosed for sure, it’s more an assumption.. he did test for certain antibodies, but he said the blood tests don’t offer certainty.
    I am feeling well at the moment, after weeks of severe fatigue and mood swings. I take 10mg carbimazole/day. My endo acted as if Graves was no big deal at all, but now that I’m reading all these stories, I start to worry…
    Good luck to everyone and thank you for sharing your stories!

    Reply
    1. Simon Waters Post author

      Anne,

      as you’ll have gathered headaches were my first and only symptom.

      I’ve seen one paper suggesting 60% of patients experience headaches before treatment, but I guess it depends how significant it is compared to other symptoms. I now think I may have had sinus pain rather than a headache.

      The antibody tests come in various types. Whilst little is 100% certain, if you have positive TSI, or TRAb test (antibodies that cause Graves’) and hyperthyroidism I think it is reasonable to say you have Graves’ disease.

      I’ve met one person who had these results and also had another complaint causing an overactive thyroid, and I’ve heard of the odd thyroid cancer patient with similar. But what I believe is happening there is that having Graves’ doesn’t exclude having other thyroid problems, and indeed there is evidence it may make them more common.

      In the UK it is more common to measure TPO antibodies, which are a marker for autoimmune thyroid disease, but may not distinguish Graves’ from overactivity caused by Hashimoto’s disease (which is usually an underactive thyroid condition). TPO antibodies also occur in a large number of apparently healthy women (~15%), and is associated with increased risk of later thyroid problems, so probably reflects a mild form of autoimmune thyroid disease.

      Reply
  41. Elayne

    Hi Simon

    having spent 2 years being told by an Endo that although I was Hyperthyroid I actually had Hashimotos Disease. I was put on PTU but only had them for 18 weeks after which the Endo stopped them and told me I was in remission and discharged from the hospital. That was April 2011 by December 2011 I was so ill but doctor treated me for a virus for 4 weeks, she then did a blood test and told me I was overactive. I seen an Endo in February 2012, who said I should have the RAI treatment but I declined unfortunately I couldn’t get another appointment with her until the end of June. In the meantime the GP was upping my medication everytime I had a blood test until I could just about get out of bed. I asked to see another Endo which I did today, he has told me I have Graves disease and that the only treatment for it is RAI or surgery that medication won’t work. When I refused either he agreed to monitor blood tests for 18 weeks and adjust my medication by phone. He has discharged me from the hospital and will only see me if I agree to treatment.

    All of this has left me feeling very confused and then I found your blog and realised I was not alone. There are so many support groups if you are Hypo but and they mention Hyper occasionally. Reading this and everyones responses has made me realise I am not alone. Thank you and everyone for your stories they have helped me I don’t feel so alone noe.

    Reply
  42. mrssmithy

    Hi, i have graves disease and hyper active thyroid. Was diagnosed in October after a visit to the doctor re hair loss and night sweats (i’m early 30’s). Anyhow – tyroid levelss were 109, safe levels between 10 and 19 so no wonder my hair was falling out. Been on medication since but readings were 82 after recent stint in A&E because of heart beating 169 a minute 🙁 was given drugs to slow it down and sent home 10 hours later. now on 30 mgs from 20 mg, feel good, still sweating at night a bit but this is my only symptom at the moment. No tremours, hair loss very settled, no jittery lip/jaw due to anxiety. All good good. My eyes are back to normal as they were slightly swollen, not as sensitive to light now. When its bad its really bad, but getting there….:)

    Reply
  43. Emma

    Wow, so much to digest. Thank god I found this site, as I have been feeling really alone with GD and reading these stories has helped me and upset me also! I was diagnosed with GD in Oct 2010 when my kids were 9 months and 2 years old. I blamed my symptoms for the lack of seelp I’d been having. I’ve always had headaches but they were worse and when I lost loads of weight (which, as side effects go wasn’t too bad as I was overweight! But yeah, it came back on…) a friend sent me to the doc’s and said You’re not right, ask for a bloody test. My thyroid levels were pretty high so I was referred etc etc, but then they shot up even more and I felt so unwell. Went on PTU as I was still breastfeeding and the pills did their job for 14 months, until the docs suggested I come off them. I was FINE for about 4 months then bang, off fell the weight and I knew what was up as soon as I stopped sleeping and lay there listening to my heart playing the bongos in my ear all night long. So, back on the pills, Carbimazole this time. I was pretty p’d off as I’d assumed (being far too optimistic) I’d be one of the lucky ones who sponatenously got rid of it. That wasn’t to be. I’ve reacted quite well to the carbimazole in that physically I feel great, but mentally am all over the shop. I’m very irritable, esp with my kids which I feel SO guilty about as they are now 2 and 3. I do try to explain but it’s hard. My partner gets a lot of my anger too, and I do feel bad about this. has anyone else experienced increased irritability on Carbimazole? I’m now thinking if it’s not going to go away just take the damn thing out but a thyroidectomy doesn’t seem to be a reliable cure? Obviously I can’t have the radioactive scary stuff because of my children so I’ma bit stuck. I’m only on a small dose of C, 10mg in the morning, and the docs have suggested I try for 2 years this time. This thought depresses me! I don’t like the drug – even my pharmacist said it wasn’t a ‘nice’ drug!
    One other concern is that my daughter’s anterior fontanele hasn’t closed up (she’s over the 27months outside limit) and I have been reading on the net that there may be a link with the PTU I was taking when I was still feeding her (on doc’s advice, they said it was ‘fine’). Has anyone else heard of a link/have a similar story? I don’t know yet what the outcome of this will be as she’s been referred but we’ve not heard yet when her appointment is. It may be totally unrelated.
    It was so good on here to read about everyone’s symptoms and recognise them – i don’t personally know anyone else who’s had it but fortunately I ahve some really good mates who put up with me talking at 90 miles an hour and wanting to eat and party a lot….
    Does anyone know if I could have been sufffering from this(GD) for years but mildly? Some of the symptoms go back years – this is the first time in my life I’ve not suffered from regular headaches and I can only think it’s due to the meds. They are now very rare and I used to neck panadol like they were smarties to be headache free. Bizarre…
    I have to go out now but I’ll be back on here asap, feels like I found a crowd of folk who will actually understand. I was telling a friend today how I felt PMTish all the time right now, and this isn’t right as I’m in the ‘good’ time of the month. I hope this goes away soon.
    I have no family history of GD.
    Anyway thank you, Simon, for this site, I’ll be a regular visitor. not got time to re-read this so hope it makes some kind of sense!
    Amazing, isn’t it, how once you are back in balance you realise quite how crap you were feeling… apart from the moodiness I have now I feel brilliant physically.
    And lastly, I am totally convinved there is a cure out there, and I am totally convinced I can find it! yeah yeah, I know, but I did cure myself of stuff before using alternative therapies… more of that later.
    Emma X

    Reply
    1. Simon Waters Post author

      Total thyroidectomy is fairly reliable at dealing with the hyperthyroidism, but pretty much guarantees a lifetime of thyroxine replacement. Don’t be fooled by my experience of a sub-total thyroidectomy.

      Yes it is very possible you had mild Graves’ for years before diagnosis.

      Moodiness – the experience sounds common but do check they have the thyroid hormone levels right (fT4 and fT3), and haven’t drugged you into being moodier than strictly necessary.

      I have a three year old he makes me irritable sometimes, judging by mothers of his friends it may be more to do with having a small child than with having Grave’s.

      Can’t help with the rest – sorry.

      Reply
      1. Emma

        Thank you. And thank you for the site! I found the yahoo site you recommended and have been reading about dietary changes which may help – am going to try them1 My kids don’t normally wind me up – I ahve a huge patience foe them except right now! I think cutting out caffeine/sugar etc etc might help, although I don’t take much. Re suffereing from it mildly, if that is the case have you any idea why it stayed at a mild level? I am pretty convinced I ahve ahd symptoms, the more I read. It’s hard to explain what I’m asking – I mean what was happening to be suffering mildly? I think a virus triggered mine as I was quite ill before and had a very sore throat for a while, and again when I relapsed I’d had a similar virus. I’d also been dieting which I never do but both my Graves came on I did! It could be coincidence I guess. The docs thought I was talking nonsense – their view was You’ve got the antibody, it’ll happen anyway. I am aiming for living with it in remission without drugs – think I can do it :)? I was in denial before but now I know I’ve got it forever I’m on a mission to deal with it better. Re the Elaine Moore book, the only edition I can find is 2001 – would you happen to know if there is a more up to date edition?
        Thanks for this, really it means so much to be able to come here!
        Emma

        Reply
        1. Emma

          Sorry wrote that in a rush – I meant both times my Graves came on and made me lose all the weight etc etc was when I was dieting.
          I also meant to say I have the eye thing mildly in my right eye, which I am not happy about. I’m hoping it will stay mild.

          Reply
  44. Caroline Marlow

    I’m so glad I’ve found this site…
    I was diagnosed with Graves Disease nearly a year ago – at 52 I thought it was the menopause causing the heat intolerance, but when I wasn’t able to sleep and my heart was racing even at rest, I thought I’d best get things checked with my GP. I’m seen every 12 weeks at local hospital and am currently taking Carbimizole 15mg daily – the physical symptoms are not so bad, but I’m struggling emotionally..I work full time, but find myself getting panicky if I’m asked to do something new, I can’t drive on my own – I know I will just freak out and my confidence is ebbing – I feel more and more like running away – especially when I feel I’m being put under any pressure. Would welcome any suggestions… Reading comments from other people with similar experiences is useful – don’t feel that I’m the only person experiencing this – thank you!

    Reply
  45. Debra Calder

    Hi All
    I am a fellow frustrated thyroid sufferer from SA.
    My scenario: TSH 0.1, Multi nodular toxic goiter but T3 and T4 normal range.
    Terrible heat, have had headaches sll my life but really really bad at the moment (am 51) Been on Neomercozale for 4 weeks and now started a beta blocker.
    Now the endo says he thinks I must go to a neurologist and have a brain scan???
    # years ago went through terrible anxiety,weight loss, trembling and shaky–slapped on to anti depressants, which I stopped in january. Helped the anxiety but gained a lot of weight. I am very interested to read about all the people with headaches on this site.
    I welcome any feedback. I think the neomercozale is aggravating my headaches? Oh, and am so nauseous.

    Reply
  46. Zoe Mason

    Hi
    I was diagnosed with hyperthyroidism mid dec 2011 after visiting my GP feeling ‘not quite right’. Blood test showed I had TSH of 0.02 (can’t remember T4). Urgent referral and an appointment a week later to endo at hospital. Diagnosed with Graves as raised antibodies to thyroid. Started carbomazole 40mcg. 6weeks later started thyroxine 100mcg. 2 weeks later back feeling terrible and thyroxine reduced to 75mcg following blood test showing T4 had risen again. Now due to come off block and replace next Wednesday but not really looking forward to it. Recently gone on course of antidepressants as feeling shocking again but blood levels normal. Endo says no connection. Starting to feel a bit more normal now but anxious about next week…

    Reply
  47. Nina

    Just wanted to post a thank you really. I was diagnosed with Graves in 2006…had probably had it for two years before diagnosis. I have been in remission once, for one year, after an 18 month course of Carbimazole. I tried for remission a second time in Nov 2011 and wished I hadn’t. I had been stable for two years on 5mg Carbimazole alternate days. On stopping the T4 shot up. Was back on Carbimazole to try to get it back under control. What no one then realised (because they weren’t bothering to check the T3) was that the t3 had shot up as the T4 was coming down. GP thought he was managing me and didn’t want to refer me back to the endo! It took months before
    He realised…after a phone call to the endo and a T3 test, that I was suffering from T3 thyrotoxicosis. It’s been hell. It has now triggered further eye problems, with acute, severe pain behind the eye requiring 30mg of codeine to kill. Proptosis to a thankfully small degree so far. Finally got to see the Ophthalmologist today who was less than endearing shall we say. Finally also, see the Endo on Monday. Am now completely hypo with a T4 of 5.3 and feeling so nauseous and flat and tired I can’t tell you.

    So, all in all am so angry with this disjointed system that Graves sufferers have to pit up with. Should have pressed for immediate referral back to my v nice endo when I first realised was so ill at beginning of this year. But when you feel so rough with Graves you aren’t up to fighting with the medical profession, let’s face it. Now I have to put up with this disjointed ophthalmology/endocrinology consultant situation when really with Graves there should be a joined up approach…. they should look at the T4 and T3 levels in relation to the eye situation. Madness. I feel I could write a book to tell them how it should be done. My faith in their ability to handle Graves is severely tested. I’m just waiting for one of them to suggest it now, ha, ha, because for me to even consider any suggestion of RAI or surgery when none of them seem to know as much about it as I do is about as likely to happen as me being cured of Graves before I die.

    But, back to the ‘Thank You’. Simon, I stumbled on your website back in the early days and have been back to it many times. It was a godsend and still is.

    Reply
  48. Kevin

    Very good site, thank you for setting it up.

    I was diagnosed about three months ago after a year of increasing symptoms, not eyes, but all of the rest of the usual, including dropping from 75kg to 60kg.

    I’ve found the medical help to be faintly rubbishy; my GP was pretty good, determined to get to the bottom of wired symptoms, and mega-relieved to find a thyroid problem, because she thought it was “something far more sinister”, and the consultant seems solid, but neither of them pointed out the mental side of the problem. My partner identified how it was affecting my moods, and then I net-surfed my way to information.

    It is as if medical professionals either don’t know that Graves affects the mind, or maybe vice-versa.

    Anyway, again many thanks, K

    Reply
  49. Lucy

    Hi all,

    This is the first time I have looked at or contributed to any blogs/threads about hyperthyroidism and Graves. I developed mine after each pregnancy, usually this would be post-partum hyperthyroidism which also usually goes away by itself within 3 months. Mine didn’t and within 3 months of having my son, I had lost 3.5 stone, was shaking uncontrollably, having 9-12 bowel movements each day and finally was so toxic, I was being physically sick. When I went for tests the readings were literally off the chart. I’ll never know how how bad it got but the doctor did warn me I was at risk from a stroke. Not the news you are hoping to hear when you have a new baby.
    I was referred to a specialist at my local hospital straight away. Initially I was put on propylthiuracil. This is deemed safe when breastfeeding. 10 months later, my thyroid still wasn’t under control and after developing a rash all over my body, the specialist told me to come off it altogether and see how I did. Needless to say, within 2 weeks I was almost back to the same state as I had started with. It was Christmas and my next NHS appointment wasn’t until the new year. I couldn’t take it anymore and took myself off down to Harley Street to see a consultant there who I am happy to recommend to anyone looking for someone who actually knows what they are doing. Within a few weeks of being on Carbimazole, I was finally under control. Although I went under active initially, I quickly adjusted my medication to level it out. This is a totally normal procedure.
    I could go on about different people I have consulted at different times and their rubbish advice, coupled with The NHS not testing my T3 as standard and relying totally on the TSH and T4 readings to diagnose (not at all helpful if you have the less common T3 hyperthyroidism). The amount of times I have been told my thyroid is fine based on the TSH reading when it hasn’t been the case is far from funny and trying to educate your local GP who knows less than you can be hugely frustrating.
    My advice to anyone struggling out there, is that as hard as it is when you are totally exhausted and feeling very down, is please please educate yourself on the science and don’t be afraid to really look for or request another consultant until you find someone who is genuinely clued up. I know this probably sounds arrogant and pompous but after being ill for so long, it only turned around when I took my health in my own hands, stopped submitting to white coat syndrome and started questioning the person in front of me.
    After another relapse following my second child and my initial NHS results showing I was fine, I took myself back to my guy on Harley Street and low and behold my T3 was out of the normal range and we managed to nip it in the bud with a much lower dose of Carbimazole this time around. I have maintained normal readings on just 5mg per day for the last 18 months (the minimum time needed before attempting to come off) and am now trialling coming off it altogether.
    I am now looking into the value of a gluten free diet etc as a way of helping stop a relapse and to avoid the other related autoimmune disorders that I am now more at risk of developing.
    To the ladies out there, my thyroid has affected absolutely everything. Like those of you getting frustrated with the professionals not making links to the mental and eye problems, I have had several abnormal smear results, preventative treatments etc. there are no formal links but occasionally a doctor will admit that the haphazard results are likely to be an effect of my thyroid. I don’t see why not, it has affected everything else, my hair, skin, thought processes, digestion, sleep, weight, even my ability to spell at times! My heart rate, muscle weakness (at my worst I couldn’t get up from the floor. I was 28!)
    I’ll stop waffling now but hope this helps especially to the Mums who are being misdiagnosed with postnatal depression etc and not having their thyroids tested properly. You aren’t alone.

    Reply
  50. JACQUI RUSHE

    My husband was diagnosed with Overactive Thyroid, with Graves disease in 2007. We lived in the North of England at the time. Nobody told us the seriousness of the Graves side of the problem.

    We moved down South in 2010 and he made regular hospital visits and they put him on block and release treatment. In March 2012 we were told, for the first time since 2007 that if he got a sore throat he should go to the doctors as his immune system is affected by the Graves.

    In May he got a high temperature but NO other symptoms. After 2 days he went to the doctors and they put him on antibiotics to be on the safe side, “as he had Graves disease” they said. After listening to his chest they thought he had a chest infection starting. 4 days later no improvement so we called the doctor out and he immediately called an ambulance. In hospital he was told he had a severe case of pneumonia. All sorts of complications occurred the next day and it turns out he had a very rare form of fungal pneumonia. He died six weeks later and I am left totally devastated. Had he not had the overactive thyroid and Graves disease he would still be here probably. Please, please take the time to find out all the details of this disease. We didn’t and we certainly didn’t know how serious it was and it is now too late. Even our GP wasn’t well clued up on Graves Disease. I am not blaming her but can’t understand why a GP isn’t fully aware of the disease. My husband enjoyed the manic side of the overactive thyroid but never ever realised how serious the Graves was. He wasn’t told, so he never worried about it. Ironically he was due to see the hospital on 5th July to arrange for either removal of the thyroid or to have the radioactive drink. He died on the 6th. I am not trying to frighten anyone but the more you know about the condition, the more aware you will be of any symptoms which may lead to problems.

    Reply
    1. Lin Miller

      It’s good that you left this story although it’s so sad and I send you my sympathy and support for what you and your husban went through.

      The trouble is, all diseases of the endocrine system are seen as the poor relation in terms of funding and research, yet the thyroid gland affects the whole body, there’s not a cell in the body unaffeccted.

      Carbimazole can interfere with our ability to fight infections and I was definitely alerted to that by both my GP and the pharmacist where I get my medication. So at the first sign of a sore throat I phone my GP. So far it’s only happened twice and each time I was on antibiotics for weeks. However, I am also on immune suppressants so the risk is doubled. Yet I too have heard tales like yours where people aren’t alerted to the risks.

      My consultant (the thyroid one – different one for the eye condition) says he struggles to highlight the importance of educating people about thyroid disease and/or Graves disease. Most people are told it’s ‘treatable’ but rarely are people told of the ongoing problems nor the very real risks to a person’s health if the condition isn’t managed properly. And many people don’t get a correct diagnosis until the condition becomes critical, as in many cases here it seems. I’ve found it very difficult, trying to let family and friends know what I am going through without seeming too bogged down with the details. If you say the word ‘cancer’ or ‘arthritis’ or pretty much most health conditions, there is immediate understanding and support. Not so with Graves Disease which is incurable and a chronic, ongoing illness. I would love to have health information about diet, especially in light of the medications used to control the thyroid and eye diseases, and exercise, which is difficult when you are intolerant to heat or prone to an increased heart rate.

      I’ve felt like getting in touch with the media and asking that they do some awareness raising as it seems there may be many people out there, diagnosed or not, who are struggling with Graves Disease.

      I hope you are well and happy yourself and thank you again for your honest story.

      Reply

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