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.
Hey everyone,
This is a fab site thank you Simon! I’ve suffered with symptoms of hyperthyroidism since 2005, finally diagnosed with Graves in May 2007 when my T4 was off the scale and I had a massive goiter, i was 27. How did no one notice my neck swelling?! I can’t begin to tell you how sick I was both physically and mentally but some of you have probably felt the same. I spent well over 3 years on carbimazole and beta blockers whilst my thyroid continued to try and finish me off! My mind and body were shutting down and no one but me seemed to be concerned.
I was utterly petrified of surgery and get Keloid scarring which isn’t something I wanted on my neck! I had also developed chronic anxiety and bi-polar disorder due to Graves, so i finally opted for RAI in Dec 2010. The end was in sight….right??
In the 18+months since RAI Ive been stable and as yet never hypothyroid. However I still have all the mental symptoms, which I’m told I’m stuck with, I still and will probably always get chronic Graves symptoms when I get a mild virus even though my T3, T4 remain within normal limits so far!
I haven’t felt normal once since this all began and if I’m honest I can’t see myself feeling well ever again. Now my adrenals are slowly but surely giving up and I’m pretty sure its due to the damage caused by thyrotoxicosis, doctors tell me it’s not the case but they’ve been wrong about most things until this point!
I can’t stress enough to those newly diagnosed how important it is to be in tune with your body, NEVER ignore new symptoms and don’t let anyone tell you you’re ok when you know you’re not! Graves has altered my whole personality and changed me forever, I didn’t see it coming and I can’t see it going!
Good luck on your thyroid journeys people!
Please read my next comment below, it might be of help[. You can and will feel normal again. I caught mine early but still felt VERY bad, physically and mentally, plus I ahve two small kids and was struggling with them – just very tired all the time. Anyway I feel so much better now,a nd as happy inside as I was before – you can and will get better. Just read as much as you can, try making dietary changes, and keep positive. Youc an beat this!!!
Hi I was diagnosed with Graves in April 2014 after going to the GP with a terrible pressure in my head my brain appears swollen (Dr not sure if thats me or thyroid) my symptoms came on within a week and I was diagnosed in A& E dept same day as going to GP. My T4 was 90 with my TPO antibodies >599 I was put on 40mg of carbimazole daily and 120mg of propananol. After my last blood test my T4 is within normal range with my T3 still raised. My consultant has lowed my dose 20mg 5 days ago and already my palpitations have already increased (I had gone some days not taking any propananol) im shattered and having horrible broken sleeps going to bed feels like torture.
Could a change in dose cause me to feel unwell so quick? how long does it take for thyroid to start to build again? my next blood test is at the end of the month I am worried I will be back to square one if I leave it that long. I find it difficult to get answers on the internet, I bought a book but dont have the concentration (because of hyperthyroid) to read it does anyony have any answers to my questions
Wow! I have Grave’s Disease and Bipolar Disease (diagnosed at age 21), but never knew there was any relation. I also cannot concentrate on my studies, so I quit college my junior year. The headaches are still happening even after having the radioactive iodine treatment and being on levothyroxine 112 mcg. All this time I just thought I was just mentally ill, freaking out especially when I am too hot. I thought that it was supposed to be fixed after treatment. I was never told about the permanent side effects, nor if the connection between all of the rest. Do you have joint pain and/or back pain too? I always hurt, but refuse pain management due to risk of addiction.
I had Graves’ for several years before finally getting the diagnosis, by which time I had the eye disease and Graves’ myxedema, I ended up with the myxedema for 17 years, as in the UK, unlike the US, they do not treat it!! Or at least that was what I was told.
From someone who had had no mood disturbances in my 45 years, with the onset of Graves I became a lunatic, and twenty years on the mental health aspect has never left me. It is had a terrible affect on all my family, terrible. From a sunny, calm, laid back personality and can now turn into a harridan in a second. Always ready to go on the attack, Graves’ rage has taken over my life. I was told I would get my life and personality back, that never happened.
It’s amazing how slowly Grave’s developes. For a long time (I’m talking at least 10 years) I’ve had a fast metabolism – Going out Saturday night clubbing, coming home 2am(ish) in a stupor, only to bounce out of bed at 7am fresh as a daisy. Then August last year I had to see my GP. In 3 months I had dropped from 80kilos to 52 (but I was eating everything I saw), had really bad aches in my shoulders and upper arms, irregular sleep patterns, and boy was I sweating.
When I saw my GP she looked at the blood tests from my MOT (I’m 45) and told me straight I was hyper (strange they never called me back after the tests, the results for the thyroid hormones were sky high, I saw them lit up red on her computer screen).
Was prescribed 15mg Carbimazole for the first 2months, which was then upped to 20mg.
First mention of Grave’s was after a referal to the Outpatients department. The Doc explained they would keep me on the carbimazole til my blood tests are near normal then RAI.
Now, a year after the original diagnosis I’m actually starting to feel better, though I stall have most of the symptoms (the aches are gone at least). I have a goiter, though not so bad that people who’ve never met me will notice, my weight is back up there and my appetite is normal.
Things I will be bringing up at my next appointment include the fact that I have no energy anymore, and everything tastes so salty it actually burns my mouth (even mars bars). I hope these are symptoms of something else (maybe a sinus infection).
Who knows what the future will bring, but I wish you Simon, and Kelly, and all other Grave’s ‘victims’ a long and fruitful future
Thank you for taking the time to put your experiences of graves disease online I have just been diagnosed and needed to read someone’s personal experience rather than text book printed leaflets off the Dr. an honest and informative insight into the ups and downs of treatments available including the after story of surgery.
Hi Everyone!
I wrote on here previously when I was feeling pretty rubbish… that has now changed because of various lifestyle changes I’ve made. In brief, I was diagnosed with Graves 2 years ago, and I’ve been up and down since then. This Summer I became hyper again whilst on the tablets, after a course of antibiotics, and that’s when I thought I need to get a handle on everything…. so, I’ve now given up wheat/gluten, dairy, caffeine, and started taking ginseng, motherwort/bugleweed, eating heaps of brazil nuts, chai seeds and fresh fruit and veg as much as poss, more water, acidophilus, a good multi vit and trying to realx more, and my god I feel soooooooooo much better. I bought a good book – a holistic remedy for Graves book, I forget the title but can look it up if you are interested. I am sleeping again, I feel happy and positive, I just feel BETTER. I still take my carbimazole like a good girl but hopefully I’ll be able to cut it down soon (with advice from doc)….basically I’m trying to treat the whole body, not just the thyroid as the docs want to do. One weird thing – my thumb nails were growing in a really odd, bumpy ridgy way (very ugly) and have been doing for a few years – basically since I started getting sick – and since my radical dietary changes (6 weeks now) the nails have started to grow perfectly smooth – so imagine what’s going on in the inside of my body. Excellent. Good luck everyone, and I can really recommend this type of treatment.
Emma
Please Emma can you tell us the name of the book you mentionned please? I discovered my grave disease one year ago, My blood test are better except the antibody but I feel so depressive, lack of motivation…I don’t know what to do. I don’t want to take prozac but don’t want to be like this no longer! Thanks if you can give me an answer and thanks for this usefull blog Simon.:)
Hi Emma,
Please can you let me know the name of the book. Have twins of 9 and feel I am failing them as Graves is really controlling my life!
Thanks
Di
Hi Emma , thanks for your really positive story. Please could you send me details of the of the book that you mention. Many thanks Alison
Thank you I think I will try this. I’m taking 10mg of Carbimazole was diagnosed in April 2016 and was started on 40mg daily I have since been back and I have a salty taste in my mouth and a sore tongue.
Thanks again
Hello, have seen your note on here. I thought l was getting better and today was told l was overactive again but not to take medication. This has terrified me as l am so scared of the panic and anxieties coming back. Does anyone know why l shouldn’t take the carbs? Kane
Hi Emma what is the book called?
Hey Emma would love to know the name of the book you talk about. Or more about your new diet. I have tried gluten free for last 3 weeks folllowing relapse of Graves after 18 months neo-mercazole free . Specialist has suggested radioactive iodine therapy to eradicate thyroid . I’ve seen blood results of someone following this and not keen. (I’m a practise nurse). Thyroidectomy is net option although read TRAB levels can still be effected following actually as with iodine therapy. Sooooooo…… gluten free next, although specialist thinks it’s hogwaah !
I’m just fed up of feeling shit and everyone is suggesting my temperament has altered .. and not for the better !!
Not sure about dairy free though due to bone health ?? I am 58 yrs ??
I would love to hear your dietary guidelines or read the book. Thank you cheryl
Hi,about two weeks ago i went to the doctors for something to help my progressive insomnia,not sleeping for days in a row up at night walking the house,i also described trembling,feeling hot,and sweaty eye swelling and aching ,irregular periods.
Being 43 i thought it was peri menopause,i hav’nt felt myself since christmas having suffered a month of an ulcerative colitis attack, and again at easter losing over a stone in weight.
Normally i can eat anything i like without putting any weight on at all.A lot of the symptoms of ulcerative colitis are similar to some of thyroid disease.
Any way at the doctors they suggested i have blood tests for my thyroid and a few days later having spent all morning at Heatherwood Hospital Ascot (weird huh i come from Bracknell too and remember the met office demolished now)for a fractured elbow,got home to a call from doctors asking me to come in urgently.I saw the doctor that afternoon,she took my blood pressure and listened to my heart and said “have you not noticed how hard and fast your heart was racing? ,your blood pressure is high”your tests have come back that you have quite a problem with your thyroid,we shall recommend you to an endocrinologist put you on beta blockers and 5mg of carbimazole (sounds low to me?) a day.
i have to say the trembling seems a lot better already but still not sleeping well,i have one more day left of tamazipan and am saving it untill i can,t bear it.Still quite hot and sweaty,still my same nervous energy kind of self,with added benefit of a sore elbow.
It seems i must be collecting auto immune diseases like stamps and am interested to hear what the specialist has to say but don’t see him till 1st November 2012.Wonder if i get the same guy as simon although i am going to king edwards in windsor.
I would be interested to know what the other auto immune diseases there were in your family as you touched on them in the biography but did,nt go into detail.
I found this very enlightening, and would like to thank you from one Bracknalian to another(once).
I’m so glad that there is a page like this! I just have a question that I’m hoping to ask other sufferers of Graves..
For background I was diagnosed about 2 months ago but looking back now Ive probably had it for 3 years.. I also have celiac disease which I’m told is related…
So I have all of the expected symptoms, the tremors, fast heart rate, shortness of breathe, heat intolerance etc but I’ve noticed another more disturbing synptopm and I wonder if it may be related to the graves disease or something entirely different..
I have what I call like periods throughout the day (maybe an hour to 2 hours at a time) where I’m really confused and forgetful.. Things that I do everyday I can’t do and I get confused by. Songs that I have sung for years I forget the lyrics etc so it’s really worrying.. But as soon as I can snap into one I can snap out of it and it doesn’t happen by anything that I do or don’t do. Anyone that has had anything similar I’d really like to know so I can do something about it!!
Sounds like “Brain fog… ”
It is a common symptom. It is most common with hypothyroidism. Of course it could be something else, but it sounds fairly typical of a thyroid patient.
If you are on medication, and this is a new symptom or occurring more often, this is probably a sign the medication needs reducing. If you think it could be due to overmedication speak to the doctor ASAP.
It is very common a few weeks or months over starting antithyroid drugs to need to reduce the dose and fiddle around to find the dose that works for you.
When I was over medicated I was sent to the see the endocrinologist but couldn’t even recall his name, or my GPs, when I got to the hospital reception desk – embarrassing but probably par for the thyroid clinic.
Hi My name is Suzie I’m 41 years old ,8 years ago I had my son by emergency c section ,my blood pressure dropped really low …this was the start of my long journey…….
six weeks later I was really really tired ,whole body ached ,would go to bed at 7pm and would be on the phone to my hubby if he was late ,would get ulcers all over my tongue,weight gain ,sore throats,my face and hand would swell up {moon face }was told it was because I was a new mum ,this went on for 3 years I would often be in tears at the gp , I’m sure they felt like was mad I was walking miles -still gaining weight i would say things like say i wanted to say dog i would say something completely irrelevant but would begin with the same letter ,anyway i found a lump on my throat ,was sent for thyroid test came back normal had fine needle test in my lumps on my neck #{goiters} also had stress test went undiagnosed for a whole year{ felt so ill contemplated suicide on more than one occasion, saw a diff consultant ,my putridity gland not working had brain scan , and was told I had secondary thyroidism was on thyroxine for about 4 years my levels were slowly creeping up . I was getting chest pains and had now got breathless going up two flights of stairs ,this went on for 9 months ,was taken off thyroxine { did not feel any better or worse & I think that is strange ,so my consultant said my body has mended its self { even though I was told it was for life }had ultrasound test on heart,treadmill test 24 hour heart monitor , my heart rate is fast is all they can say ,they don’t know why ,heart man took me off thyroxine for 3 months and for one month I got hospital dates mixed up forgot birthdays and dates in general ,so went back on thyroxine ,consultant said doesn’t happen with my levels so come off meds again ?
had more chest pain went to diff gp done t4 t3 test it was very high, hospital called him to take me off my thyroxine {i’ve not had any since July }so did another blood test still as high now I’m told I’m over-active and on 10 mg carbimazole a day ,started10th sep 12 I have bad head aches and my eye sockets just hurt , I don’t see my thyroid man to the end of oct ,so don’t know the proper diagnosis ,i feel like its all starting again have now been told i have a fatty liver is this from the meds?and they have found something on the ultrasound so now have to have ct scan ,still getting chest pain ,only out of breath now on a incline,
do they ever get it right ?
Have just come back from hospital had a long chat with consultant he has never come across some one having secondary hyperthyroidism then getting well then going over. Hypo it’s not graves or hashitoxicosis as blood came back negative he’s going to do a case study on me as there has only been one other case in 1978 he said I will make him famous.hopefully I may get some answers ? Feeling very down and can’t believe I have to live with chest pains feeling hypo then being so tired after 9 years the light at the end of the tunnel seems to move father away as I move towards it.he has told me to eat iodine .and there in no truth in soya mucking up thyroid meds ………
Wow! That’s interesting and thank you. I will definately speak to my endocrinologist right away. I was on a lower dose (10mg) and it wasn’t working so they put me up to 15mg so that definately could be it! Thanks again for your help this is now my new favourite site! 🙂
HI just an update.I had to come off the carbimazone as I was feeling really ill.they change meds and my levels are still riseing now on 200mg a day .still have chest pains and am out of breath.go from being full of energy one day then days of feeling tired .got hospital tomorrow so we shall see if leavels have gone up .im gluten free and have read that soy makes tyroid worse.also not to eat cabbage, grapefruit or take meds with tea ,coffee , or orange juice that’s fortified with calcium.
Will let you know if I get any answers tomorrow
Yep, the brain fog!! Sounds very familiar to me. It was the worst when I was overmedicated (hypo). I’m still forgetting a lot, so I write everything down, but it’s already much better. Once you find the right dose it’ll improve.
How long we’re you over medicated for and how long has it been since that you’re still forgetting things?
I have started to write things down but I sometimes for get to do that!
I started forgetting things about 2 months before I was diagnosed (mid March 2012) and it got worse when I was overmedicated (August 2012). I was overmedicated for a month I think. Since 3 weeks my head is clearer and I remember more.
Hi everyone
I have had graves for 20 plus years. For the past 7 years my eyes have started to bulge and since I live in the USA and don’t have insurance it sucks. When I was in Britain visiting I ended up in ER with a corneal abrasion. The eye doc said he could do surgery and discuss options for my eye disease. I am a UK citizen. Has anyone had eye surgery here? If so how did it turn out?
Tought i was going mad great site i have been on neomerzacol 15mg a day cant get the weight down with graves getting married in dec 12 any advice
Hi,
I have recently been diagnosed with Graves’ disease and Graves opt allopathy. I have been up and down going to the doctors. I am 45yrs but look like am16. I was started on 20mg of Carbimazol, then reduced to 15mg and am on 10mg. I have 80percent of my hair. Affected my finger nails. I was leaking like a tap last, had to the doctors for some medicine . My left eye has been affected . It throbbing as am writing this text. I could go on and on. My next appointment is next month to see my endocrinologist.
Hi all …i had graves in 2009 never heard of it before and think i must of had it for a while before being diagnosed . I went to the docs cos i had a missed period for two months i got blood tests taken and then referred to the hospital. I was on carbimazole 20mg and beta blockers for my heart rate. I found this help with my t levels but personally i went thro hell it got so bad i would not leave the house eventually i went four days without any sleep. All i did was pace the floor 24/7 a doctor had to be called out and i was given diazepam i was only meant to have one but took three so i could shut my eyes and get a sleep . I felt my life was over . Until one day i was so sick and fed up of feeling so bad that i decided to help myself i changed my diet stopped smoking went back to work i was determined this wasn’t going to ruin anymore of my life . I built up my confidence and self esteem learned to relax through deep breathing and told myself i am going to get better. Well it worked the doctor started reducing my dose and i just felt better and better until i was completely in remission. My life changed i got a new job a fantastic boyfriend and loved living again . Well two weeks ago bloods checked and im afraid it has returned altho this time i recognised the symptoms and i requested the blood tests. Im not scared this time and determined i will get thro it there is light at the end of the tunnel ive been there before and will return there again . I say to any one diagnosed with this condition to take back control of your body and fight it with positive attitude and determination.
Louise you’re absolutely right. It’s very easy to get stuck in your own little pity party and things just get worse and worse. Good on you and good luck! I’m afraid I’m not that lucky.. My graves is actually getting worse every time I get blood work done. Trying to stay positive so thanks for sharing that 🙂
Hi everyone. So glad to have found this website has been really helpful thanks!
My boyfriend was diagnosed with Graves disease over 2 years ago and after a long drawn out process and 3 treatents with radioactive iodine he is now officially borderline hypothyroid. We are now just waiting to get his heart sorted out as he had atrial fibrillation as a result of Graves aswell. My question is this-has anyone else experienced a complete lack of libido as a result of RAI and if so has anyone found a successful treatment. It is very hard to talk to my partner about this as i dont want to add any extra pressure on him but I really am desperate to get oyr relationship back on track in that area so we can start a family at some point. Thanks for reading x
Hi, I was told I had graves this summer. I’m on the paleo diet and have managed to reduce my Carbimazole from 20 mg to 10 mg. I do need to get my blood rechecked as I have been stressed. So I may need to get advice on my meds maybe they need to be 15 mg.
i realized I was loosing weight at 17 but didn’t think anything of it.. I was 110 and I was around 100 for about 14 yrs..I went to doctors for other things but they weren’t conserned with the weight..i got preg with my son 2008 and my weight was 97 lbs and the ob didn’t check y I was small..in 2009 was 124 when I had my son…my weight was 110 for awhile then got preg with my daughter in 2011 and was 93 lbs…went to see a new ob and she saw I was very small so she ordered blood test for my thyroid and came back and went to see a thyroid doctor…he said I had hyperthyriodusim..and if I waited any longer wouldn’t of been good…I was diagnosed with graves disease…so he put me on thyroid meds for when ur preg safe meds..i was 140 when I had my daughter oct 2011…was put on methimazole and almost a year..i get my blood work done every 6 weeks the this past jan 2013 I went in and got my results and I am in remission…ck again in 6 months..my appatite has increase…waiting for my hair to stop fallin out…
I am a male and I dont know if I do have Graves or not, but I noticed a low sex drive a long with some other symptoms if I do have graves, and it is treated, will my libido return over time? Are there supplements I can take to restore my libido, or will it return on its own?
I was diagnosed with Graves four years ago and have been on Carbimazole since. Currently on 40mg a day. Last bloods in March showed TSH of 0.03. Bloods taken this week shows TSH of 74.
Am feeling extremely relaxed and can sleep very easily. Am I now hypothyroid? Should the Carbimazole be reduced or should I be on block and replace?
The size of my goiter has become quite large in the last fortnight and was very sore for a few days when I had a cold.
I have been sick for two years. First shingles. Took the vaccine and eventually it went away except for some nerve damage. I’m 60 and now I have graves disease. Arggg! I’ve lost about 30# sweating hot hurt all over depressed brain fog fast heat rate and bp too high. Feel so bad and so weak. Finally seen the ent then the endo. I have a very sore throat too. The endo gave me rai and in about a week I felt some better. Sleeping a little now. Its so hard bc my hubby didn’t believe I am sick. That made me feel worse. A few times I felt so bad I thought I was dying. Still not 100% but maybe soon. I think stress brought this mess on. I long to feel strong and well.
Looking back over the years…mysterious infections and rashes. My doctor thought it may be lupus. I hurt so bad most of the time. I blamed it on arthritis. I’m sure my thyroid was hypo at times bouncing to hyper and back again but no one caught it. Until now…
Hello sorry to say this but every time I read something on the internet relating to graves disease it’s always doom and gloom yet when I speak with a group of people from telephone support from BTA they have all been very positive. One lady I spoke with had RAI after 2 months of treament, I must admit this was 30 years ago but she has never looked back since and has been very healthy since. She isn’t the only person I’ve spoke to who has had a positive outcome from having RAI, maybe they were the lucky ones? All I know is, I am determined to get my life back and being on Carbimazole long term isn’t the answer, in my opinon of course.
I’m not a doctor just a sufferer of graves disease.
Hi folks I was also diagnosed with Graves approximately 40 yrs ago. I was aware something was wrong as I was sweating profusely B/P low( I have High b/p) very fast pulse which made me shake so badly that I was barely able to hold down my job as CCU nurse fortunately I always have had problems sleeping! I was given a course of PTH x 6 weeks last few weeks I was taking 24 pills/day and getting side effects. I was offered rai surgery or treat a storm again with PTH and took the radiation . It has been very successful and even my dose of replacement didn’t need changing until last few years. It’s easy to take a few pills a day and stay healthy. Don’t hesitate to insist on seeing your specialist if you feel something is wrong with you. It’s your body and your life
Just been diagnosed with overactive thyroid so glad i found this site dont feel alone on 20mg carbimazole and bedranol only been on 4 days and feel better has anyone had to have abdomen ultrasound and consultant at hosp wants more blod tests is all this normal procedure x thanks
Hi everyone. So interesting reading everyone’s different story’s and experiences with Graves. I was diagnosed in Nov 20012. I am only now beginning to understand what this actually is. I’m 25 now but was 24 at time of diagnosis. I am on 5 mg carbimazole so I am assuming this is a good thing?? However I feel I am on a roller coster with no end. I suffer from anxiety and depression also. I still have the same symptoms although I am told by endo doctors that blood tests are showing good signs?? I feel like a “nutter” and “out of control” at times and have done since before being diagnosed and still do now. Mood swings are erratic, The sweats and hot flushes are embarrassing, low mood comes from nowhere, and I seem to have no filter on saying things to people. Does ANYONE else feel like this or has felt like this? I can’t work as that’s to stressful and I just feel like I’m alone a lot and that the Doctors think I’m making this all up!!! I actually have a great GP. But I always feel like he is thinking ” here she comes again”…… Please tell me I’m not alone in feeling like I’m going “mad” at times ?? I’m only young and I fear the future! Would love anyone’s feedback!
Yes! I know this all too well! The worse part is that you get told you should be feeling OK when your levels are balanced but I still don’t! It gets to the point that it’s embarrassing to tell the truth about how rubbish you feel to the Dr’s as you feel you’re not meant to still feel unwell.
and how are you now Holzy?
I live in the US. I have had this for what I can discern as likely since the early 90’s. I had the radioactive iodine treatment and it helped, but the symptoms are still there. No one gets me. I have been in the psychiatric hospital a couple of times due to my depression and anxiety issues….had no idea that they were connected with Grave’s. You are fortunate to have found this page so soon after being diagnosed. I have brain fog terribly and tremors. Thirty years have gone by without any reason for me being nuts, no verbal filters, temper outbursts/rage. Ok, so now we both know more, which is great, right? They took too long to diagnose it. I had one doctor who tried to tell me that it was humanly impossible to go longer than 48 hours without sleep. He’s wrong definitively. This page is excellent. Read more. Good luck with your decision making about your course of treatment. The iodine treatment has some unpleasant side effects, metalic taste for about a month, weakness, and flu-like feelings, but not unbearable.
Hi there,
I have been looking for a lot of blogs on Graves’ disease as I have just had another occurrence. I am 59. Originally diagnosed at 17 after symptoms of weight loss and persistent diarrhoea, had partial thyroidectomy and RAI, and I was good to go. Since then I have had relapses every 10 years or so, and been treated for 12-18 months with Carbimazole/Methimazole (I now live in the US). I have never had any issues with the drugs and always gone into remission at the end of treatment. Last year, I had an accident – I fell down my basement steps, broke some bones and had a concussion. I was off work for three months. Ever since then, my weight steadily decreased, my legs felt weak, and I knew Graves was starting up again. No problem, I thought. We’ve done this before. Except that after 6 weeks on the Methimazole, 10 mg a day, I had a horrible allergic reaction. The worst rash I have ever experienced all over, and then my left knee swelled up and was so painful I couldn’t walk at all. My family doc gave me Prednisone to calm everything down, and my endocrinologist switched me to PTU. I now have to be monitored closely because of risks involving liver toxicity. After six weeks on PTU, I started to get severe muscle cramps at night, not just in my feet, but up my entire leg. I would drag myself out of bed as quickly as possible and walk around for about ten minutes, and then get back into bed, only for the whole thing to start all over again. I didn’t sleep all week. My doctor said it wasn’t the PTU; I didn’t believe her. I lowered the dose on my my own, and the cramps disappeared. I have since discovered many other patients on PTU with the same experience. Now the cramps are gone, but I don’t feel all that well. Some days are better than others. Sometimes I get headaches; sometimes I get a dull ache in my upper gut, which of course concerns me as I am aware this could harm my liver. I am starting to think about RAI again, but really don’t want to go hypo. I am also looking for a naturopathic doctor. I have already made big dietary changes – no sugar, no gluten, lots of liver-friendly food and supplements. Just hoping to get through the next year and pray I go into remission again. All the best to everyone dealing with this. Has anyone else here taken PTU?
Been suffering with graves disease/hyperthyroidism for over 4yrs now. when i was 1st diagnosed my T3 T4 levels were high and was causing all sorts problems ie excessive energy burst, sweating, hand tremors, anxiety, trouble sleeping etc, i was put on carbimazole 20mg and propranolol, these made me feel so much better and within a yr the hyperthyroidism ws gone. i was clear from symptoms for a few months, then in sep 2013 i surely started seeing some of the symptoms returning, palpitations, hand tremors, itchy eyes, increased appetite, etc but this time no energy. blood test shown this time my thyroxine level had almost doubled and T3 T4 levels were normal, doc said i had relapse and was put back on Carbimazole/Propranolol. my consultant advised me that i should go for radioiodine therapy or thyroidectomy, but im worried that these are going to lead to other problems within my graves disease. Recently ive been experiencing occular migraines and itchy eyes could this be TED ??
Any info on this would be much Appreciated
Thankyou for your help
claire
Thank goodness for this site. Three months ago i was diagnosed with graves disease which i had never heard of but looks like i have had the condition for over 3 years before i finally got a diagnisis. i work in a stressfull job where im physically running round all day so didnt notice the symptoms until i had a blackout at work, i got this brain fog and thought i was losing my marbles as couldnt remember what i was doing. i couldnt breathe and thought i was having a heart attack but managed to get control and calm myself down, i put it down to a sore throat that id had for over a week, my loss of voice and generally feeling run down so visited an emergency doctor. he told me that my heart was racing at 206 beats per minite and to go to the hospital, thank goodness i got my sore throat or i would never have known as i put my fast heart down to work related stress. after going to the hospital they diagnosed me with arrithmias but sent me home with a letter for my doctor, it took 6 visits to my doctor in 2 weeks to make them listen to me, i told them that i had uncontrollable shaking in my hands and legs, i was litterally sweating all the time even when i was doing nothing and that i had lost 4 stone in weight ( again i put this down to stress ) i had sank into a deep depression which put a lot of pressure on my partner and i just couldnt think strait, i had many episodes of what i can only describe as out of body experiences and weird dizzy spells that left me with severe headaches so he eventually agreed that i had something wrong with me. after a lot of persuading, he sent me for blood tests and heart traces. 4 days later i got a call from the surgery requesting that i go in to see the doctor urgently. he showed me on the computer that my thyroid results were flashing red which was obviously a problem so he reffured me to endocrinolgy and started me on 5mg of carbizamole and beta bockers and no information as to why and what these pills were for. i waited 3 months for my appointment and my symptoms seemed to get worse. when i finally got to see the consultant, he was not happy with my low dose of carbizomole and was appaled at how i had been treated by my doctor, i had been given no information or advice and was left to the internet for advice. the consultant explained my symptoms and also about ones that i had but didnt even know about. he upped my meds and has since made sure he treats me every visit rather than a junior member of his team. i am still not as yet improving and feel so down because im helpless and cannot do anything to help myself feel better, i cant sleep and have a mouth full of ulcers which my doctor is telling me normal but after 3 weeks of not being able to eat, im starting to think its time for a change of surgery. my next endocrinology appointment is two months away and im beginning to think ill never be better. please advise on what to do as i know all you lovely people have also struggled with your illness and too have been at the end of your tether. sorry for going on and on but it feels so good to tell people that know im not exagerating my illness. thank you for taking the time to read my comment.
Holzy i too have gone through crazy unpredictable mood changes and now my partner is convinced that im bi-polar! im not of course but think its the beta blockers that are causing this for me, im usually a positive person but since my change of medication onto new beta blockers i have noticed that i have no control over my mouth or my temper. i tend too lose my cool over the simplist things that would never have botherd me before and now to speak before i think. i checked on the side effect list for my benedril 80mg slow release prophalane pills and it does say severe mood changes (psyhcosis) which is not good im sure so am awaiting another appointment with my doctor to see about changing them again. i have been off work now for 3 months because i am in a managerial position and felt like i had no control over myself let alone my team. please dont feel alone and that your doctor dreads seeing you because what we have is apparently well known to make you feel like this and most doctors are very understanding and supportive . hope you feel better soon x
I too began my battle with sever headaches. It took me over a year to find a physician that would listen to me and not write me off as another pill hunter or just a migraine sufferer. I had to come to the appointment armed with bloodwork, though. The headaches were and are so severe that I would welcome a migraine instead. Fast forward through allergic reactions to both antithyroid meds and RAI 131 and here we are. I am 60lbs overweight struggling to maintain my daily routine. Don’t mock. I am active and have always been so. My thyroid is still not under any control and I have Thyroid Eye Disease. My gift for RAI 131 and, apparently, I already had it and it was not diagnosed before the treatment. Great. So, for the past three to four years I have been suffering these headaches. Not much attention to them until they became horrific and daily. Daily headaches that feel as if your eyes will pop out, the top or back of your head may blow out or both. And in the last few months, my hearing is diminished. I can actually hear a whooshing and heart beat in my head. Sometimes, I can hear my eyes move in the sockets. Yes. I can. And I hate it.
I joke a lot about what is happening to me. That is how I was raised. Someone else has it worse than you, so be thankful for what you have been given. I am. I could have it worse, I get that. But when you cannot muster the stomach to do your job which involves staring at a computer screen or take your children to school for fear of wrecking, there is a problem. When you spend a gorgeous day inside, hiding and praying that this isn’t the headache that kills you, there is a problem.
Many other symptoms have come my way. I have the fatigue and weakness. Before I was treated, I was much lighter, yet when I squatted down, I could not stand back up due to the leg weakness. Tremors, mood swings, hair loss was awful. The list goes on and on and if I were still overactive, I would probably list every.single.one. and then clean my house before I go to bed to toss and turn. But after treatment, I have more underactive symptoms, even though my thyroid is still volatile and unsettled. My meds are still adjusted, two years after RAI 131.
I wish everyone here the very best. This is a road that we are traveling together and any cyber-friendships made may hold the information needed for someone to get the help they need. May we all find what we need in order to achieve the wellness we deserve!
hi amy i was wondering what are they actually doing for your headheaches im in the same boat had them for 5 monthes now had graves all symptoms then had rdi now under but my head feels likeits gunna explode theyve put me on veripramil taken it for nearly a month and well nothing and my face looks really hot when i get them which is everyday now gotta sleep in the afternoon or cant make it through the day
i feel like a wreck…
rachel
I have also been diagnosed with Graves, it started 4 years ago. I had just had my last baby, ( I have 4) and figured I was just losing baby weight. Til I got down to 98 lbs! My heart just races nonstop and I’ve lost my mind, at least I feel like it. Once I was a happy person, now I’m so tired all the time and negative, with mood swings that are very severe. I was put on 80 mgs of propranolol and methimazole, which helped a lot. At least until I broke out in hives so bad, I had to be taken off of it. I thought I was going crazy, now I know I’m not alone in this!
I’ve been diagnosed with graves desiase and hypertyroid 3/2015 the radiology has recommended my doctor to keep me off any meds for 6 months at first I was diagnosed with hypothyroid with nodules and a cyst in thyroid 2 months prior to being diagnosed with hypertyroid. Has any one have to wait for 6 months for treatment
Hi Everyone,
Reading all your posts lets me know im not alone with dealing with Graves. Just had a total Thryoidoctomy 2 months ago but dealing with head pressure for nearly 8 months now. Trouble is its ruining my life & my families. I work in an office but not sure how much longer i can last. The head pressure is constant and you never know when its going to get worse. Im taking Proponalol for Anxiety but i feel this is not helping. Does anybody know of something i can try? Im goin to try accupuncture.
I was diagnosed with Grave’s disease about 12 years ago. I was trembling constantly and thought I had Parkinson’s or something equally distressing and put off going to the doctor as a result. When I did go he immediately diagnosed Grave’s disease and the follow up tests confirmed this. I was treated with Carbimazole and felt normal again quite quickly, luckily so for the past 10 years or so I’ve been fine.
However, I’ve started to get headaches where I never did before. I wondered if I’d burnt my head in the sun ( September in England) as it is sore to the touch as well as inside. I have also developed a bronchial cough (no cold first, which seemed strange. I have spent most of my time in bed, sleeping for a few hours, waking then sleeping again. I am wondering if my thyroid is playing up again – things are v stressful, which I’m sure triggered it before.
Although I was told I would have Grave’s disease for life my doctor never refers to it now and I don’t have any blood tests.
I’m hoping this strikes a chord with someone.
Look after yourselves.
Clare
I was first diagnosed with Graves disease in 1992 when I was 42. I was allergic to Carbimazole and was put on PTU for 2 years, I had a remission after 18 months and was put back on PTU for 18months and got nearly about 18 years remission, thought I’d kicked it! This year I got symptoms again, I am now back on PTU for one year before deciding on ‘definitive’ treatment’. I think the death of my husband 2 years ago brought me out of remission. This time round it is far worse, with excrutiating joint pains, weight loss and lack of interest in life in general. I am still working which keeps me sane. I am considering RAI as a ‘cure’. I feel for all of my Graves disease community, it’s a bitch!!
Hi, I was diagnosed three years ago but it’s clear the condition was bubbling away in me for years beforehand. I have Graves and TED. Carbimazole sorted out my thyroid and after a year my levels were ‘normal’, and my eyes eventually adjusted themselves over time. The pain is still there and they are enlarged, just not so obvious now. The double vision has gone. The doctors say I’m fine now, but I’m not. The mental issues are horrendous. Panic attacks, brain fog, anxiety, saying stuff I shouldn’t, my God it’s never ending. Friends peel away from me, I get obsessed with people and message them continually until I’m told to go away. I feel like I’m some sort of crazy loon. I get suicidal and depressed, but hypnotherapy helps me get back to normal. This is only a temporary fix and I have to go back monthly. I wish there was a cure. I want my mind back!
I am sorry to say that I don’t think there is a cure? It’s an auto-immune disorder, so how does that get cured? The reactions I get from colleagues and family is that of complacency. An aquantance glibly said ‘Oh that is when you lose loads of weight’. It is not seen as serious or debilitating. The options for treatment are all worrying, with no guarantees. As I said before it’s a complete bitch!!
Hi I’m dealing with double vision as well. For the last 11 months could you tell me how long your double vision lasted please.
I enjoyed reading your story. I am male with hyperthyroid graves too, I was only diagnosed a few months ago after some kind of scan at the endocrinologist as well as blood tests confirmed it.
I used to have windows of time where I felt ok and my primary symptom – stomach ache – was minimal. In recent weeks and months I have stomach pain and erratic sleeping patterns more or less continually now. It is very hard to live like this. I have a 2nd appointment at the endocrinologist on the 22nd of this month but I don’t know how I’m going to keep going, I’m desperate to try carbimazole, I have lived with these symptoms since I was around 17 years old or perhaps younger and I am 29 now.
I hate feeling like this, I am in pain all the time, my moods are all over the place, I like going to the gym but it takes a huge amount of masochist to put myself through a punishing workout when I feel like this. And afterwards I’ll often be unable to sleep as well as exhausted.
Wish they’d just cut it out and be done with it, far too much of my life has been virtually wrecked by this, especially the stomach ache.
Thanks for sharing and for allowing me to share my story too.
Hello fellow sufferers.
This Graves disease sucks, Even the name is just bad. Well, I have heard a lot about headaches. Light, sounds hurt and you don’t want to move. A few times I even threw up. The best thing that helps me is …………cup of coffee, advil/tylenol. go to your room, no lights or music on.Dont talk to any one, your on a time out. Tie a scarf around the forehead (just enough to keep your brains from popping out) and tie it at the base of neck. …..So? yea, you look silly. Lie down and start with your feet. take a slow deep breath and as you slowly breath out, relax your feet to the thigh. breath again and now your arms and up to your head. It may take 30min.
Now I have a question. I was diagnosed 5 years ago and a car accident a year later that left a herniated neck and lower back, I am a mess and so overwhelmed. living on 300.00 a month. I had to find a new primary doctor because now no heath insurance. My teeth are now cracked and some even came out whole. There are all kinds of dentist, But the insurance I have now, only 3 offices . One will not accept new patients till April, one has not accepted any for over a year. So, I was happy to get in at Western dental, The more i read the reviews, the more scared i get. Its just all bad.
I want to go back to work part time. Who wants to hire a bookkeeper with no teeth.
Will Social Security help me.? Do I need a laywer? is there a good one out there?
55 and alone. Please Advise, ….Anybody ?
Thank you for a place to listen and vent.
p.s. You will beat the computer at chess!!!!
Hi all,
I was told I had graves last July (2014) my GP referred me to consultant but I’m the meantime put me on carbimazole 40mg first week and to drop 5mg a week for 8 weeks and on propanol. Within weeks I was in agony from the drugs, could barely move by three X of the day from pain in my legs and back. I saw another gp who said I was on way too high a dose. After 4 months I saw the consultant who agreed to change me to PTU however it caused problems with my kidneys and liver. Now I’ve been taken off all meds and told to see if my thyroid has sorted itself out after just 6 months of medication! I feel like I’ve gone backwards and I’m not being listened to. My heart feels like it’s jumping out my chest, I have migraines weekly, hot sweats daily, the shakes are back. It took me over a year to go to gp with everything as I normally just get told its stress or depression and given meds for that! I finally demanded a blood test for my thyroid and my levels were really off! Now I’m back waiting to see the consultant to find out about not being on anything for nearly 3 months and feel like I’m just going to fobbed off. I know my body and I’m the one dealing with the day in day out stress of it so surely they should listen to me? My thyroid is swollen to 6%, not much i know, but my throat is constantly sore at the back and I just get told I have acid reflex for chest pains! Strangely they don’t help but try getting anyone to listen! Has anyone else had this problem?
I am new to this even though I was first diagnosed with Grave’s Disease in early 1990. We all have/have had different experiences with this disease and the medical “industry” but those of us in the U.S. deal with institutional apathy and disinterest on a level not encountered elsewhere.
As a young adult I was tall and thin with a ravenous appetite. I gained no weight no matter what and how much I ate. Yet I did not feel ill in any way until about age 24 (1981/82). At that point, following a period of prolonged stress, I had a sensation of having swallowed a hair, that is, it felt as if there was something stuck in my throat. Soon after, skin eruptions developed including both acne and cysts. This calmed down for a while but I felt a vague malaise which led me to a doctor who determined only that I had elevated liver enzymes and bilirubin both in my blood and urine. He sent me to the emergency room for some reason where I was told that there was nothing wrong (this was the professional opinion of a doctor who did not look at my lab tests and did not examine me).
About 1987 (shortly after the disaster at Chernobyl), while living in Germany, I developed a very high fever (about 105 f.) which lasted 4 days. I was delirious and unable to help myself and received no medical attention. When the fever abated I had lost 20 lbs. The new normal for me was a permanent low grade fever making it impossible for me to sleep under covers without the feeling of breaking a fever.
It was not until late 1989 that things really spiraled out of control. At that point I had dropped to 135 lbs. ( I am over 6 ft. tall), had cysts in my breasts, on my spine and face, had severe joint pain especially in my knees making it impossible for me to climb stairs without difficulty, had lost much of my hair which just fell out in handfuls in the shower, whole body itching particularly at night, skin problems again such as acne, heart palpitations, inability to sleep, heat intolerance leaving me perspiring without a winter coat on cold New York winter days, etc. I presented to a doctor at that time and was finally diagnosed with Grave’s Disease. This means that after all of this it took the medical profession about 8 years to actually diagnose the problem. It took a full blown thyroid storm to do so.
For several years I took Tapezole as a thyroid suppressant, refusing to accede to radioactive iodine treatment. I did not trust the doctors in the U.S. at all so sought out second opinions in Germany where they advocated taking minute doses of thyroid hormone (Synthroid) in combination with a thyroid suppressant, in order to trick the body into believing that enough thyroid hormone was in circulation. I also had an excellent Chinese Medicine doctor so I was ingesting herbal teas simultaneously. Unfortunately, within 2 years I developed Grave’s Eye Disease, began feeling the effects of hyperthyroidism again and was diagnosed with an autoimmune cluster including bleeding time and blood clotting issues and lupus-type factors. Nevertheless, I was told that my Grave’s Disease was in remission and I was weaned off the Tapezole. Then I lost my job and the health insurance that came with it. That was 1993.
For the next few years or so I saw a doctor occasionally and continued to be told that my Grave’s Disease was in remission even though by 1996 I was again quite ill. The symptoms were very familiar but because I was being told that the labs were normal I just tried to deal with it thinking it must be something else or psychosomatic. This left me living the life of a shut in much of the time in order to avoid the stress trigger, meaning any stress would cause heart palpitations, flushing, etc. So long as I was home I could deal with it but once outside, esp. in NYC, I was overwhelmed and just wanted to get home. I was no longer able to drink any alcohol or caffeinated coffee without flushing. It’s amazing what we humans can adapt to.
In 1997 I developed a high fever again while on a trip to Portugal. When I returned I managed to get some health insurance and went to an endocrinologist who told me that my body was not working anymore and that my TSH level had dropped to .2. Shortly after that I was scheduled for a complete thyroidectomy.
My experience with this surgery is typical I think in that it took a long while before my TSH levels stabilized and I found my optimum dose of thyroid hormone replacement. Often feeling unwell I just learned to live with it. About 3 years after the surgery I began to flush more frequently so that for one period I was flushed with heart palpitations for over a month every day. The diagnosis was Carcinoid Syndrome though it was false of course. Then, all of a sudden, things stabilized and for the most part I did well in terms of my daily experience of well being. Of course,during this period I was diagnosed with fatty liver disease, gall stones, and eventually Coronary Artery Disease leading to an angioplasty with 3 stents but I did not think that my thyroid was the culprit. All of this was taken in stride as I had become used to just not feeling well so much of the time and I was resigned to living with illness.
Now to the point of this note. About 18 months ago I began to feel very ill againa strong heartbeat, flushing, feeling feverish even though my body temperature is suppressed (usually between 96.8 and 97.2) though it can spike to between 99 and 100. I was not able to sleep more than 30 minutes at a time and often felt these strange body rushes, like waves of energy going through my entire body, upon waking, so all night long. I itched all night, felt short of breath or had the sensation of being overly conscious of my breathing if that makes any sense, had skin eruptions, headaches, loss of hair, and so on. When I checked all my labs for the previous year I saw there had been another precipitous drop in my TSH level with no concomitant change in thyroid hormone dosage. The doctors had no explanation at all. I asked why my TSH would drop to that level with no increase in thyroid hormone and they just looked at me like I was taking too much of their time. One doctor suggested counseling because I seemed depressed. Since this last onset I have been to many doctors none of whom have any insight. They just want to manage the lab results by playing with the dose of thyroid hormone. The problem is that even though my TSH levels have recuperated erratically I am still symptomatic. I can not sleep, I flush and feel feverish, I ache especially my upper body, have a strong heartbeat, am unable to deal with stress, am having memory issues (which naturally I forgot to mention earlier but has always been a symptom) and is probably why I can’t remember all the other things I’d like to mention.
At a certain point I believe we just give up and stop seeking medical advise and that is not right. There is no reason people in this situation should have to live this way with no real help. I hope this is in some way valuable to others. If so, it has been worthwhile.
Yes, my endo has told me that my pituitary could be causing my overactive thyroid but he didn’t have time to explain. With the anxieties so high he has made me feel worse and l have to wait for my next blood test before giving me carbimazole despite being high.
Hi everyone! I have been diagnosed with Graves disease two and a half years ago. I had a lot of symptoms, high blood pressure, palpitations, bulging eyes, went to toilet like 5-6 times a day, my hands were shaking, my nails were breaking, had late periods, abnormal breast pain before period, lot of sweating, couldn’t stand a heat and I was craving sugar so badly. I ate a bag full of sweets per day but my weight was going up and down every 2 months. When I visited doctor for the first time my TSH was as low as 0.005. I got 30mg of neomercazole and since I started taking medicine I gained 16kg In just few months. It took me around year and a half to lose weight with a help of dietitian. I was on a high dose for around 6 months and slowly reduced as my result was getting better. I spent around 6 months on just 10mg and everything seemed stable, and then all of a sudden in February this year my blood result was bad again. Since that time I am on high dose again, 20mg per day and I gained 5kg cause of medicine even though I am dieting. Not sure if any of you had similar problem with gaining weight cause of medicine? Also, I have more problems caused by neomercazole. I am feeling so sleepy all the time, tired, no will to go anywhere or do anything, all I want is bed. Also, since the beginning of the therapy my libido is extremely low. I have no sex drive and it gives me additional pressure cause I live with my boyfriend and he thinks I am not attracted to him enough. Please tell me if any of you had problem with libido while taking neomercazole and how did you fix the problem?
Ugh I get you with the weight gain its F****g annoying Im like you I eat healthy and diet it’s ridiculous and not fair!
You have to stop fueling it by not eating sugar and grains. Keep fruits to a very low minimum and eat tons of leafy vegetable, good oils such as high quality extra virgin expeller pressed coconut oil and good quality extra virgin expeller pressed olive oil etc. You just have to stay away from all of the garbage foods. Eat a diet similar to the atkins diet. STOP THE SUGAR AND GRAINS. Do not eat ANY high carb foods so you can get your thyroid under control. It is working for me. I have a large goiter but I stop giving it any fuel. It seems to have shrunk some. I was on 100 mg of atenolol and 10 mg of methimazole and now I don’t have to take ANYTHING! GLORY!!! And the doctors told me it would be impossible! Thank You, Jesus!!!
Hi everyone I am 23 and was diagnosed 6months ago I went to my doctor as I had lost over 12kgs in 5 months every one was worried about how skinny I looked.but with a busy life I didn’t really realise.I had palpitations.excessively high body temperature all the time,shaking legs I couldn’t drive my car because of the clutch! My doctor took my pulse 150 she was very worried got a urgent blood test and ECG & was put on metoprolol then and there.then she told me it was graves I had no idea what it was except for the fact my mother had it in her 40s. I had gone threw a stressful 2 years so I put it down to that. I was put on 45mg carbimazole daily and metoprolol 4 months went by I put on 8 kgs felt a lot better but as a young girl its hard to put on that much weight and feel okay about your self
Al my symptoms went though the metoprolol wasn’t stopped by my doc and I had chest pains and tight chest I took it upon my self to stop it and it was the best thing I did I felt 100% better I told my doctor she didn’t seem impressed but it’s okay for them they are not going through what you are. I was sent to a “specialist ” who just asked me questions and wanted me on carbimazole for 18months at least . But as I’ve put on a lot of weight I’m not keen and now my legs and ankles have swelled up i am on 10mg a day I decreased it my self i am seeing my specialist next week and if he doesn’t help/change my meds i am thinking about taking a natural approach any thoughts on this?? Thanks
I was diagnosed with Grave’s Disease with Hyperthyroidism as well as Grave’s Eye Disease in July 2012. My partner & I split up in September 2011 & I moved out. We got back together & in late October 2011 I started losing weight, I’d recently started making a concious effort to drink more water so thought it was down to that. I was eating like a pig & still losing weight, I had been trying for years to lose the excess I had with no success, who questions weight loss when you’ve been trying for a while? Yeah me neither. Over Christmas my tonsils flared up again so usual trip to GP for Amoxycillin & it was then my OH asked me if I was ok? He was concerned as I was losing weight rapidly, just between late oct & xmas I’d lost 2 1/2 stone, he suggested I was becoming bulimic & that I should see our GP in the new year. I wasn’t bulimic, not a chance I like my food too much 😀 but I did tell him I was making an effort to drink the recommended 8 pints of water a day & get a bit more excercise.
January 2012 I went back to my GP, by this point I’d had 3 courses of antibiotics & they clearly weren’t working anymore, I knew that would happen eventually as I had been in a near fatal car accident in 2004, my injuries meant I was placed in an induced coma to try to keep me alive & I spent 2 months in hospital with it taking a year to recover fully. As a result I had been on a lot of medication as you would be after the injuries I suffered & I was informed that medication would become ineffective at some point in my life. My GP referred me for a tonsilectomy & that was booked for July 2012. Day of the op came I’d had the raft of tests & nil by mouth etc etc & arrived at Lewisham Hospital, when it came to check in at 6am they could not find me on the system despite me having all the details & rung them to confirm the previous day. An hour later I was told it had been cancelled 4 days previous due to abnormal test results but could not tell me what just that I had been referred to Queen Elizabeth in Woolwich & although it was marked I had been told I hadn’t. Needless to say I was not happy.
August 2012 I found out that I had Grave’s Disease with Hyperthyroidism. It explained the rapid & extreme weight loss, I’d gone from a size 26 to size 16 in 6 months-9 stone! Got told frequently never seen that kind of loss before, the sweating & rapid heart beat with odd bouts of breathlessness. Was put on a course of Carbimazole 80mg & back in 2 months with regular blood tests. This continued over the next 8 months with a small blip at the start of the course & then nothing after. I had changed consultants within the same hopsital, 3 months after that I was switched to PTU & put on Propanolol as I had started getting a lurching sensation as my heart was skipping beats, my levels were still sky high with my blood pressure in the region of hypertension.
March 2015 I was referred up the chain as I was showing no progress in bringing my levels down to euthyroid state, I was getting very annoyed at my consultants lack of desire to do anything other than prescribe pills which we all knew were not working due to previous ill health, which they knew about. I was booked to see a consultant at Guy’s in 5 months time. Got to love the NHS & its long wait times. By this point I had put a complaint in as I felt I was not being listened to & that something more needed to be done than to pop pills, did I mention they are the vilest tasting things I have ever encountered? Like licking 20 grapefruits at once. I was taking 16 pills a day 14 PTU 40mg & 2 Propanalol with still no change in levels or heart rate infact it has gotten worse. Was told by Guy’s I would be treated here & I would not be shunted about again. That lasted 3 appointments before I was passed to St Thomas’ & onto consultant no12 & 13.
Fast forward to September 2016 5 years after first becoming ill. I have now seen a total of 16 different dr’s/consultants at 4 different hospitals with all likeliness at my next appointment on Thursday of being shunted to hosp no5 & person no17. As my symptoms have gone untreated they have gotten much worse, my heart rate is 195/99 last time I had it checked, near constant migraines which I never had until this point sometimes with an aura, the tremors are more severe & at its worst I struggle to even hold a knife & fork, the sweating & overheating is unbearable I have been asked on multiple occasions if I was ok as I look like I am about to pass out or have a heart attack or I look like I am crying due to the eye disease which is highly embarassing for me to the point where I now go out as little as possible.
Although I am still taking the medication I often have to skip half the prescription as I cannot afford to pay out £36 every 3 weeks I’m not eligible for benefits as I am not ill enough, no concessions are made for those that are hyperthyroid only hypothyroid & my partner earns just over the threshold for claiming. I am unable to work, when I do get an interview if I mention being ill I don’t hear back & on 2 occasions when I have mentioned it after being offered the position I am asked not to come in & that I should have mentioned it in the interview. Limbo it is then.
My periods are now all over the place as I have gone untreated for so long I have developed fibroids which cause excessive bleeding leaving me unable to even go to the corner shop on some days it gets that bad. In total I am now waiting for 3 operations none of which can happen until my thyroid is under control but if they are refusing to operate due to my levels being too high, a risk I accept I’ve had 3 brain surgeries, that was risky, same for iodine yet the medication doesn’t even make a dent what am I supposed to do? I have regained the lost weight & then some despite keeping to a low salt, low fat, low sugar, low taste, no alcohol, no sugary drinks, no coffee diet.
Of the 16 people I have seen clearly none of them know what to do when the medication does not work so I get shunted to the next one & the next one & the next. When does it stop? When will someone take some responsibility & do something to help me? It gets me down so much I have considered taking my life just to make it stop. I am rock bottom with no end in sight, it is affecting my marriage, my family relationships & friendships
I lived with Graves for 30 plus years before I had to get myself to A&E with a resting heart rate of 140 BPM, double vision and used what few reeves I had left to ask for help.Luckily for me this time they checked for abnormal thyroid function. My hypothyroidism had flared up during that previous year and I think I lost upwards of 50 pounds (over 3 stone I think) in 6 months, I weighed 155 pounds, at 6 foot I must have looked a sorry sight. I was in full manic mode at that point and did not notice it happening. It is a wonder I got myself to the hospital at all. I apologize if this I patchy but I just wanted to get it out. What Graves cost me physically is small to what it took from me in my life. It took all of it, from age 7 or so being hypothyroid was hell on earth. It was the basis for who I grew up to become. In short my whole existence was a series of lies, half truthes exaggerations and ought rite deceptions perpetrated again myself and everyone around me. Yes I know a rather bold statement but all true I assure you. I had my radioactive iodine treatment less than a year ago and 1 week after the proce sure I literally woke up and did not did not feel like the world was on my back. I also quickly realised that I had not a single person to tell, you see when I looked at my phone the contact list was pretty much empty, no friends no family no one. I had managed to live almost 50 years and have no one I can tell the good news to…I am cured of the awful condition…hooray. The misdiagnosis of Graves disease and hyperthyroidism not a trivial matter and as I have learned by reading other peoples accounts, I am not alone in this. In some ways it was easier with my thyroid…at least when I was manic I got stuff done..LOL
Hi I was diagnosed with Graves’ disease in January this year after routine bloods for another problem. I just wanted to know will the joint pain I’ve got settle once it’s under control? I’m on 15mg Carbimizole initially on 20mgs and 2.5mgs of bisopropol. But the pain in both shoulders especially my left is excruciating! I have had shoulder impingement on the right before and needed surgery to make it better and I feel it’s going the same way!
Will this settle once I’m controlled?
Hi simon I’ve got Graves disease I’ve had it since 2013 I had the first symptoms of shaking hands I was give cambimazole and was allergic to it so weeks later went to hospital to drink radiation that was not fun as a mother of 3 children I had to keep my distance everything was going fine then 6 months later with taking thyroid meds of 150mg a day I started to loose weight I went down to 44 kg even though I was eating like a horse, . I work night shifts as a night filler at a supermarket and it can be quite demanding job I get fatigue ealily and the mood swings omg I was a shy girl but now I speak my mind sometimes its a good thing but I can put my foot in it lol. I’m writing this right now at 3:43 am and wide awake arrrhh as I feel asleep in the afternoon as I was so tired, any way what you’ve gone through with this Graves disease I feel like its not just me lol but a lot of people go through the systems too. Thanks Cherie
I’m horrified reading all of these stories of Grave’s being ‘treated’ just by removing or inhibiting the primary target organ, with the causative autoimmune fire just being left to burn and cause more problems. That’s why you are still sick. You have to TREAT THE AUTOIMMUNITY, then the thyroid can self-correct. That means gut health (veg, more veg, protein, natural fats, fermented foods and anti-gut permeability supplements; no gluten, sugar or junk food), plus anti-inflammatory and pro-immunity supplements.
keep it short. summarise life is harder so people with autoimmune or chronic illness should have the right to choose euthanasia as a way out after battling it 5 plus year. either way we all going to die… the depression and lost of jobs concentration and lack of sleep. would drive anyone mad
Whilst I empathise, and I want to legalise euthanasia, if anyone does feel like this please speak with your doctor as thyroid problems can also lead to depression and that one is easily dealt with.
depression is really a lost of hope. all doctors wants to do is give more pills with no cures insight. there needs to be more funding for a cure. 70 years still no advances
My daugher was diagnosed with Graves Disease at age 4 after several visits to intensive care due to unrelated illnesses made worse by her undiagnosed Graves. It was only by chance that her condition was diagnosed, when on her 3rd visit to intensive care (this time due to a viral stomach bug) the doctors believed her blood to be very septic as her vitals especially her heart rate (200beats/min at rest) were so high, the doctor mentioned her heart rate and when i explained that that was normal for her, she asked a series of questions and ordered a blood test. I had told several GPs on and off for the best part of 2yrs that i believed that there was something wrong especially with her heart they would always listen to it and say there are no paliptations and i think its just high because she is anxious which we now know is another side affect of Graves.
I always knew that something wasnt right, she would have very little appetite and when unwell would sometimes go days without eating which she couldnt afford to do as she was severly malnourised anyway. I remember giving her chocolate, jelly anything just to get her to eat that was probably the worst part of the disease for me she once went 8 days without eating i tried everything she was literally starving herself and there was nothing i could do other than take doctors advice.
Her heart rate was always so high and once on holiday we had to take her to see an emergency GP because she developed a chest infection, the doctor took her vitals and told me in no uncertain terms that if she didnt take her antibiotics she would end up in hospital. The anxiety caused by the undiagnosed Graves meant that she was not good at taking medicine it had taken 3 specialist nurses in the past to get her to take Calpol a medicine that most kids love.
I remember lying next to her in bed the 1st night of her chest infection, i was lying about a foot away and could hear her heart racing it was so loud it sounded like it was going to beat right out of her chest, i lay awake all night just checking her.
Her anxiety was horrible as a parent to witness too she would get histerical over the smallest things and no matter what you did you couldnt calm her down.
After her diagnosis she was put on Carbminozole and a Beta blocker to reduce the symptoms of the disease, she would now take medicine without fuss, her appeptite increased and she was now always hungry, she put on some weight not as much as id like but she is now a healthy weight and her heart rate halfed to a healthy 100beats/min, it was however the personality changes that surprised me the most, she was now more relaxed and socialable and alot less anxious if i hadnt of known better i would have said she was a different child.
She was on Carbminozole for just over 3yrs, she was taken off the drug in January of this yr, now aged 8yrs old we recently had the sad news that it came back after only 5months off the medicine, luckily the doctors caught it early enough thanks to regular blood tests before major symptoms returned. We now have a bit of uncertainty in the future as she was diasgnosed so young that they really dont know how it will affect her long term (most arent diagnosed until teens) her doctor recently mentioned possibly keeping her on the drug for another 8yrs and then presumably taking more drastic action.
We remain possitive and take each step as it comes and are greatful that at the moment she is well.