Share your experiences of carbimazole, please?

Well, today I have "officially" been diagnosed with Graves Disease by the nice lady to UCLH. Latest blood test is worst than last time.... TSH, as usual, is nowhere to be found, T4 is now 40 (up from 31) and thyroid antibodies are now 193 (up from 170-something last time).

Anyway, I have been taking the propranolol to mask the cardiovascular effects of being hyperthyroid, but the endo wants me to take carbimazole to knock out my thyroid or at least cut it down to size a bit.

I am loathe to take new drugs; I don't know why but I hate having to be medicated to feel normal. Endo wanted me to start out at 45mg per day and adjust down if necessary, but it makes more sense to me to start LOW and titrate HIGHER if needed.

Any other hypers out there who can share what starting carbimazole was like? Did you feel magnificently better at once?

Thanks

73 Replies

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  • Hi I am hyper and have been taking carbimazole for nigh on 18 months.

    Firstly if your TSH is still rising then you need carbimazole. Loads of people come on here and ask if they really need to take it. Simple answer is "yes". Carbimazole is an antithyroid and it basically cuts down on the production of thyroxine by the thyroid. The way that carb works is to take a high dose and then cut down as the thyroid gets under control. It is the complete opposite of levo for hypo/underactives.

    No you wont feel better at once. It took me months to feel slightly improved. It will however help with palpitations, sweating and over heating, anxiety and other problems. It will not stop tiredness but may help you sleep a bit better. You may put on weight, feel starving, have acne, thinning hair and joint pain plus other issues. However it is not really a choice.

    Any other questions just get in touch. It is a miserable condition but it does help to talk to people.

  • Sorry meant to say T4 not TSH oops eejit time!!

  • Hello Greenginger,

    I have a question - I'm French but treated in the UK, sorry for my English mistakes if any. I was diagnosed with an over-active thyroid in mid-September - T4 at 34 - and put on Carbi 15mg as my resting heart rate was at 95-100, not fast enough to be a source of concern.

    2 months later, my T4 were at 13, THS suppressed, but signs of hypo: my endo cut to 10mg. Mid-December, T4 at 14, THS back at 1.3, my endo cut at 5mg. My next blood test is next week and I feel hypo again. My uptake scan shows I have Graves.

    5mg is a very low dose which is a source of concern for me: how am I going to be able to take Carbi for 12-18 months, by taking 2.5mg every 3 days for example? How low did you get before being taken off Carbi? Thanks a lot!

  • Hi I have been on carbi since May 2011 so expecting to come off anytime.

    My TSH is now at 3 and my T4 is around 12. I have been taking 5 mg for about a year and have felt increasingly better. I would not worry about being on a low dose as long as your levels are ok.

    Sometimes you may feel hypo but it is possible to have similar problems whilst either hypo or hyper. Hope you feel ok.

  • I'm exactly like you said: sometimes perfectly fine, sometimes a little bit depressed, sometimes the anxieties come back a little.

  • Yep i find I am more hyper at that time of the month. Its like PMT but evil!!

  • Hi green ginger . Thanks for sharing. I am glad to know that the carb has been working for you. My daughter's count was so dangerously high that we started her on 30 mg daily and had to increase to 50 just to stabilize but side effects of swollen body that is eyes hands lips fingers etc and constant itching had us stopping without permission just to get relief. None came as the itching and swelling came still. I believe the body is rejecting the drug. Will ave to see endo for that. So did you have any side effects from taking the drug? Thank you

  • Hi, I have Graves and have been on carbimazole for 8 years... everytime I become euthyroid and come off the drugs I go hyper again... my immune system seems to be getting worse as I have a ridiculous amount of sore throats and colds and chills and I am thinking about a thyroidectomy, doctor says this is a bit extreme but I am so fed up with feeling ill

  • I was on Carbimazole for 12 months only. It was stopped 2 months ago, I'm euthyroid for now. My experience of Carbimazole was awful: it was fine the first 6 months - with only 5mg - then I started to have major mood swings. In the end, it was worse than my period of hyperthyroidism as I had very little hyperthyroidism symptoms.

  • i am being put on this medication and would like to know wot are the chances of me and my partner being able to have a baby

  • Dear nickloir. 27 years ago I was placed on neo mercazole for a hyper thyroid. The doc said no babies while on the drug as it could affect the child. I got pregnant and the symptoms disappeared! Have been free and clean still. Baby or rather big man is fine and healthy. Speak to your doc and hear what he has to say.

  • hi ,

    Im new here,

    I have a overactive thyroid for about a 3 month now and I was at the beginning on 20mg carb now i am on 10mg and question as I runs out of the tablet and had a prestcription but I didn't go to pharmacy to collect new ones for last 5 days as haven't had chance, today i started shenking my hand and feel dizzy and went straight away to pharmacy for tablet carb, and took 2 dose, what could happend to me after I simply keep forgeting to take the tablet which i suposed to take them 10mg everyday?

  • There is a choice. Don't take the poison that hurts the body, learn about natural health.... healing the body. You think you can abuse your body for decades with normal "living" and it won't break? I have hyperth. and I know why [it is psychosomatic.... emotional] and will fix it or die trying, with food as my medicine. Poisoning or cutting out body organs because they don't work is retarded.

  • So what's your plan? I've been trawling through these forums to find people who are treating/have treated Graves' with holistic medicine. I've been diagnosed for 1 week on carbinazole and propranolol for 1 week and have my first sore throat. I'm absolutely devastated about taking this medication. I've been sugar, gluten, alcohol and caffeine free since diagnosis and hoping to find success stories of people healing this away from conventional medicine.

  • Hi Jennifer.  I had Graves about 10 years ago, really bad.  Had to do the carbimazole briefly until I went to my herbalist who gave me a liquid herb mix called Buggleweed.   No more drugs and this normalised my tests over a very short time.  The Graves did return after 3 years due to lifestyle changes not being made - working 7 days etc, etc and a resentment factor in there as well!  Back on the buggleweed and sorted very quickly.   Have had no return of the Graves since, blood tests are normal, however I have been dealing with the side effects of carbimazole for the last 10 years - namely itching and LS (Lichen Schlerosus).   Horrible side effects I can tell you!   Diet has always been high on the priority list anyway so no great changes were needed there.

    I would thoroughly recommend seeing a herbalist and asking about this particular herb,  it is fantastic for this disease - my experience only of course.    Good luck with it, there is an alternate way of dealing with it - as always!

    By the way, anyone dealing with Thyroid eye disease (and I had this real bad as well) could check out Goji Berry juice - returned my eyes to almost normal within 48 hours!   Amazing stuff.

      

  • HI thanks for that. My TSH is not rising - no one has seen it at all (too low to be detectable) since the first time I was tested in the summer.

    Joint pain I really don't need as I already have it in spades due to widespread osteoarthritis.

    My most obvious effect from the Graves in cardio and the propanolol is helping with that. I am perpetually overheated, but that has been that case since menopause 7-8 years ago, so I am sorta used to being a sweaty betty, I don't have sleep problems either; if anything I am sleeping more, not less. All my adult life I have been 6-7 hours a night and suddenly I can sleep until 10AM! Weird. I am also pretty short tempered at the moment, but not sure I can blame that on the Graves.

  • I think greenginger had a moment of finger-trouble and meant "if your FT4 is still rising".

    Short temper (in various guises) is a classic Graves issue.

    It is completely normal to give a high dose of carbimazole, leave you on that until the FT4 drops to a sensible level, then change to a (much) lower maintenance dose. But we see people coming on here who have been left on the high dose until they have been wretchedly hypothyroid. Doctors don't seem to understand how big an impact all this can have.

    The other approach is to keep you on a high dose of carbimazole, but add in levothyroxine. That is, fully suppress your own thyroid, and rely on levothyroxine alone. So called "block and replace".

  • Yes, looking at it later, I figured the first respondent might have made a typo.

    I have read quite a lot of the subject of hyperthyroidism, but as usual, it is not written from the perspective of a person with Graves, but rather someone observing them. Starting on high doses and then reducing them once they have knocked the thyroid out seems like a poor practice to me and block & replace seems even more ridiculous. I have no interest in becoming hypo either and from what I have read, about half of people being treated for Graves end up hypo. Again this looks to me like poor practice and "over kill".

    Think I will see if I can persuade GP to do another test in 4 weeks and see if there is any change in the levels of T4. If it is still escalating, then I will reconsider the carbimazole, if my liver function is normal.

  • Hi the reason that most people with Graves end up hypo is for several reasons.

    1. you have RAI which destroys your thyroid and sends you hypo or under active.

    2. Surgery - ditto.

    3. Block and replace - too much levo therefore hypo.

    I dont think you have a grasp on what carbimazole does. It does not knock out your thyroid like RAI or surgery it just calms down the overproduction of thyroid hormones. If you dont take an antithyroid when overactive there is a risk of worsening with a thyroid storm.

    It sis not a condition where you can just keep wait and see. The quicker you combat it the better. All the high dose is for is to tackle your problem. As your blood tests show improvement the medication is reduced. It is usual to then take for 12 - 18 months until bloods look normal. Then carbimazole is stopped and your bloods checked on a regular basis to see if it has done the trick. If it does not then RAI or surgery will be suggested.

  • Thanks for that. I do understand how carbimazole works; it prevents your body from metabolizing iodine into thyroid hormones. And if you take it at a high dose, it can & will knock out your thyroid production (hence block & replace).

  • the problem with 'block and replace' is that you are then taking a high dose of carbimazole which for many people gives unpleasant side effects

  • I get the impression that the approach of starting on a high dose comes about because so many people are only diagnosed when seriously hyperthyroid. They are, therefore, in danger of the many issues such as atrial fibrillation and even life-threatening thyroid storm. So a high dose is regarded more or less as an emergency measure and can, at least sometimes, be justified on those grounds.

    If starting with a person at a lower thyroid hormone level, it might be possible to argue a slow and steady approach.

    As I see it, the big problem with treatment by radioactive iodine ablation or partial thyroidectomy is that there simply is no way of removing the right amount. And what results is NOT a normal thyroid under proper control - but a thyroid that is unable to produce so much thyroid hormone that it will cause hyperthyroidism - even if the control mechanisms go haywire. I suspect that doctors would rather not do a second partial thyroidectomy to remove a few percent more and thereby keep you within bounds. Better go slightly further and, if needed, top you up with a little levothyroxine. This might be a reasonable position though I can see it is far from perfect.

    It is quite obvious that the real answer would be a technique of preventing the inappropriate stimulation of the TSH-receptors in the thyroid. And when someone achieves that, maybe yet another Nobel prize will be earned in the field of thyroid medicine?

  • Love your comment and do wish that there will be some level of getting it right. My daughter will have to eventually do the radiation surgery and I have the feeling that they will catch it just right to make her normal. After all God did answer my prayer and my hyper thyrodism disappeared. I am believing him for this.

  • Google apitope for info on a new treatment for Graves - still some way off yet but it will address the immune system problem that is at the root of Graves. (Rather than taking it out on the poor thyroid gland!)

  • Will be very interesting to see what comes out of that.

    apitope.com/

    Thanks for posting.

    Rod

  • Thankyou I also spotted the glaring error!! Sorry guys.

  • Hi

    I have been on Carbimazole since January 2012 before that I was on PTU. I did really well on the PTU no side affects nothing. I only seem to be able to tolerate 10mg although my Endo wants me to take 30. 20mgs and over seem to knock me out so I split the difference and took 15. I have also been taking L Carnitne, Bugleweed Vit D Selenium Vit B and Vit D3.

    I actually for the first time in a year feel amazingly well I don't know what my bloods say and to be honest I don't care I feel great. I am not sleeping all the time or any of the other symptoms that I have had including joint pains.

    I have been really stubborn though as I have an Endo who wants me to have either the RAI or a thyroidectomy but as she cannot give me a good reason I have dug my heals in and refused.

    You need to do lots of research and find out what suits you. It is very much trial and error what I would say is though it is better to start higher and come down than start low and work up.

    It is your body and you will soon discover what helps and what doesn't.

    Good luck

    Elayne

  • Thanks for that. My endo wanted me to take 40mg. I am not going to do that. I was also concerned that my ALT was elevated in this most recent set of blood tests. Not super keen to take a drug that can cause liver damage when my liver appears to be struggling already. Endo did not seem concerned about elevated ALT.

    I don't know if I will take it at all - part of me thinks it will fix itself when I am less stressed out. I am pretty reluctant to mess about with my hormones, especially if it is going to take 18-24 mos of interfering with my hormones, as the endo suggested. Seems as likely to me that it will wear itself out one way or the other in that time.

    What are your other supplements for?

  • I was not told about liver damage through carbimizole my liver function tests are crazy, and my liver is enlarged (i do not drink at all). No one has ever mentioned this could be caused through the carbimizole, I was on carbimizole 40mg for 2 years and now take 10mg, awaiting a thyroidectomy. I learn more on here than i do of my consultants thank you x

  • Hi, I completely understand you not wanting to take these tablets, its a serious decision but I urge you to read more on Graves and its effects. I went undiagnosed for 20 or more years and it all but distroyed my life. I believe that the earlier it is treated the better.

    I was told constantly that it was stress. It is said that stress is a contributer to Graves. I have read that some people have managed to get their Graves under control by eleminating some the stresses in their lives.

    Most of the symptoms you mention can be caused by Graves like osteoporosis, early menopause and certainly famous for rage/anger. Graves presents as menopause with extra heart rate But unfortunately there are many more associated problems one of which it Graves eye disease and although not everyone who Graves Thyroid gets Graves eye disease no one really knows why. I have Graves eye disease but it didn't show until the years and years of untreated Graves Thyroid.

    For me it was perhaps way too late in the day for any pills to help and so I had my thyroid removed but a friend got diagnosed early and she took the pills for around 9 months and has not looked back and that's been 7 years. It was her that diagnosed me!

    This site is invaluable and although there are less with Graves, there are plenty with great knowledge. Wish I had found it years ago.

    I wish you well.

  • Hi shambles, i too went undiagnosed for 26 years and it has also destroyed my life, still fighting all my symptoms and am slowly but surely pushing all my family and friends away. I am waiting to see endo next week For a thyroidectomy. I found carbimizole relieved my symptoms and i couldnt of coped without it. How did you find the surgery and how was your recovery please? xx

  • Thanks shambles I have been doing a lot of reading on hyperthyroidism since it was raised as a possibility last summer. I am sorry that your condition took so long to be recognized.

    I have been diagnosed with Graves many years post-menopause and I have happy to say that, aside from some hot flushes, my menopause was entirely uneventful and unmedicated.

    Things were very stressful in the second half of last year (bereavement and other substantial problems) and I am hoping that alleviation of some of those contributory factors will also help ameliorate the hyperthyroid symptoms,

  • Hi debbie joyce, I feel for you. It's still very fresh in my mind the dreadful thought of should I or shouldn't have the operation and can I or my family take much more?

    I got almost immediate relief after my operation and felt fantastic for about 6 months then I started feeling hyper again. Seen some not very good Endo's and then found this site and I believe I've got my meds right for now, topped up with all the necessary vitamins.

    I had a good surgeon who told me that recovery would be around 2 years which when first said I nearly fell off my chair but he expertly explained that I would be up and around in a few days but it would take a while for to find and settle on the right amount of thyroxine. He was right.

    I've spent so long feeling abnormal that I don't really know what normal is. But I reckon I feel pretty normal most days. Still get a rush of rage every now and then and I get so mad at myself for having it.

    I'm work in progress but it's good progress.

  • Hi shambles, i guess we are always going to have a bit of a fight with graves, but hopefully i will end up with some good days after my thyroidectemy. Thank you so much for your help. Hope you continue to have lots of good days xx

  • I was diagnosed with hyperthyroidism in September and with Graves' disease about a month ago. If I've learnt one thing it's listen to you body- I started on 30mg of Carbimazole and that took me very quickly down and then crashing through to hypo. I left it too long to tell my GP and battled on and it was utterly wretched. I took myself down to 5mg and my gp agreed but then I saw the endo for the first time and he said I was cured. It was a miracle!! he took me off completely. I had a radioactive scan and a couple of weeks later the endo called and said he was wrong and that I had Graves' disease. Had my symptoms returned? er, hell yeah. I was back to square one. I'm now on 10mg and it has taken a few weeks to get back to 'normal'. I still feel a little bit fragile so listen carefully to your body, review the changes you're experiencing and then adjust the dosage- with the support and advice of your GP-accordingly. Good luck.

  • Thanks this is useful; what I am looking for is personal experience of carbimazole use, not a poll about whether or not I should take my meds! :-)

    Because I am early on in hyperthyroidism, it is not affecting me especially badly. The only real effects I have had are cardiovascular, which is how I discovered I was having thyroid problems in the first place. I thought I had tachycardia (which runs in my family) and out of idle curiosity I ticked the "thyroid" box on the GP's form for a blood test.

    Anyway, because I am early into it, I am hoping that I can alleviate some/all the symptoms through dietary & "lifestyle" changes. Reading some of these replies makes me realize that I (potentially) have a very long time to experiment with this.

  • Ok if what you are looking for is how I did on carb and not me preaching for you to take your meds then here goes.

    It stopped me from sweating, overheating, having diarhea, headaches, tiredness, insomnia, panic attacks, palpitations, anger management issues, denial of medical problems and it has given me achy joints, thinning hair and put on weight.

    It has made me feel almost normal instead of wanting to die and often feeling like I was.

  • Thanks for that; yes What I was looking for was a description of personal experiences, not admonitions.

    I am very lucky that I do not have the vast majority of the symptoms you describe. No diarrhea, no headaches, no tiredness, no insomnia, no panic attacks, no anger issues (no more than usual, anyway), no denial of medical problems (too many to ignore).

    My only real effect so far is cardiovascular, which is indeed how my thyroid problem was discovered. I am also hot & sweaty all the time, but I have been like this since menopause 7-8 years ago, so I can't really blame it on the thyroid.

    I am sorry that you have felt so unwell with your disease; it has been sad to read so many people who feel that hyperthyroidism has "ruined their lives" or similar. Hope yours in under control now.

  • the propranolol will only mask the symptoms, the carbimazole is prescribed to cure your hyperthyroidism. The practice is to give a higher dose to begin, then request more blood tests so the endo can tweak the dosage. Then blood tests are taken at regular intervals to see how you respond, more tweakage of medication follows. Personally I had problems with the propranolol which worsened my circulation problems and I came off it soon after starting the Carbimazole which works well for me. Your TSH is very supressed and your T4 is sky high, this is the reason your endo has prescribed a higher dose to begin with. Be grateful you don't currently have the symptoms others have described, take your endo's advice and get well soon.

  • Thanks it is better than it was by a long way. Also forgot to mention the brain fog and memory lapses too. I also was rushed into hospital a couple of times and admitted to a ward with relation to cardio vascular issues. These have been resolved as have palpitations etc.

    Hope you feel better soon.

  • Sorry, so late replying, but violent vomiting every three or four weeks for two days has been my side effect of Carbi!

  • How have you got on with this? Three years down the track I am interested to see how your dietary and lifestyle changes have impacted your Graves'. I too am going to try and heal my condition holistically but have had to start on carbinazole and propranolol because of some very high readings, which I find greatly upsetting. I'm just looking for some hope of other options rather than destroying my immune system with drugs.

  • As far as my knowledge goes, Grave’s will not fix itself – if you take the anti-thyroid drugs and all goes well then you should be able to come off them in around 12 to 18 months and go into remission, it didn’t work as easily as that for me, but my friend was put on carblimizole for 18 months and then came off them and 16 years later he is still completely fine.

    The idea is to start on a high dose to bring you down quickly to get you out of the danger zone (this can make people feel pretty shitty as the transition from being hyper to ‘normal’ zaps you and you sometimes don't realise how hyper you were until you are brought down) and then to keep you on a maintenance dose until you are stable enough to come off them.

    I know when I first was diagnosed and read things on the internet it didn’t seem all that bad, but if you have graves and don’t get treated it can become life threatening. There is no quick answer, it takes time to treat.

    Other tips:

    If you smoke then stop

    As you have autoimmune thyroid it might be an idea to stop eating gluten/ soy

    Test for vitamin D and iron as these can all effect how thyroid works

    I take selenium although some people don’t think this helps

    Take vitamin C for your immune system

    Do as much as you can to eliminate stress from your life (easier said than done!)

    See the same specialist each time – not just a member of their team

    Keep track of your results (including your FT3 levels)

  • What is your thinking re: gluten and soy? Everything I have read suggest that soy acts as a thyroid supressor and therefore is benficial for people with over active thryoid (along with raw cruciferous vegetables).

  • from what i understand soy is full of hormones and messes with your thyroid/ oestrogen so it is advisable to steer clear - i have got an article somewhere which explains it better but i can't find it!

    This is a good link to explain gluten:

    chriskresser.com/the-gluten...

  • Soya isoflavones are weakly estrogenic, but in terms of "messing" with your hormones, I don't think so unless you are hypo. Both soy and raw cruciferous vegetables can suppress thyroid function when consumed in large quantities and therefore can be beneficial to hyperthyroid persons.

    See for example: whfoods.com/genpage.php?tna...

  • I'm a veggie and used to have lots of soy products but after a lot of research I decided it wasn't worth it and now i very rarely have miso soup/ tofu but would not touch things like soy milk/ yoghurt/ meat substitutes. There is a lot of conflicting info but one thing is that soy may be a trigger to autoimmune thyroid disease and that large quantities can do the opposite to suppressing thyroid, I wish i'd kept track of my research. It is of course up to you if you think it will help you, i'm just giving my opinion.

  • I think Carbi will help you - it has helped me. I also take Bugleweed. You might find the work of Dr Eric Osansky (diagnosed with Graves and helped himself with natural supplements) of help. If the thyroid is hyper and running fast...I can only strongly recommend you stop it....and Carbi will do that. And, if you find a higher dose of Carbi is not correct for you because of side effects, then you can try a lower dose. It will take some time to get the thyroid balanced again depending on your own individual case of course.

    I too don't like 'taking meds' - however sometimes you have to do what is best for your body.

    Take care.

  • Thanks. I am interested in doing what is best for my body as well. I don't have bad hyperthyroid effects at the moment aside from the cardiovascular effects and they seem to be reasonably well controlled by the propranolol.

    You don't mention your own experiences with carbimazole, but as I said previously, I am not interested in starting a drug which can be very hard on the liver at a time when my liver enzymes are abnormal.

  • I do understand your dilemma....feel the same as you. I too am very anxious about my liver. I felt I had to make a decision which was against what I wanted to do for the sake of my body which was running out of control and I was getting scared and therefore my judgement was affected. I now know the meaning of 'while the balance of her mind was disturbed'.

    My thyroid just flipped and pretty quickly got out of control....almost certainly through mis-diagnosis. (Although looking back I realise I was experiencing some problems at the end of 2011 - however because my Mother was dying I thought it was stress-related due to that and I could cope.) I have posted my story before...so will be brief.

    I am diagnosed 'enlarged multi-noduled goitre with isolated T3 toxicosis'...never been on any meds just 6-monthly checks....managing well with herbal supps (GreenLife). Lots of stress/trauma for a few years and when I went to docs for a re-check because I was having pals and was very anxious - I was told I was not due a check-up....I was referred to an Endo though - who, in turn did not run bloods....just said I should consider RAI or anti-thyroids. If only I had insisted on bloods perhaps I could have foreseen something about to happen. Everyone I saw and myself, thought I was stressed because of my Mother's illness/death...and because I was on no meds....nobody felt there was anything too worrying.

    Anyway...a series of very scary debilitating panic attacks had me at my gp's surgery. I was told I had to do something quickly....and I knew that as I was losing weight very fast. (In the end I lost 14 kilos....in about 6 weeks.) I took pui initially as I thought this was a better option because I had read it was better if conversion was an issue. Wrong! Had a really bad reaction within a month and my liver tests showed that...but again medical people just dismissed it all. Really bad session over a weekend and an emergency doctor told me to come off all meds...which I did cold turkey. Wrong! Amazed I'm here to tell the tale.

    So...long story short....the anti-thyroid caused raised liver levels. As well.....it was shown that I had a gallstone and surgery the only option. Had no idea I had one....absolutely no indication.

    No surgery until thyroids under control....I had to take the Carbi and if I became an emergency then I would be at a very high risk and without the Carbi surgery might be refused! By this time I am so poorly - in pain - and so hyper I just want everything to stop and be normal.

    I gave myself a month to get the liver tests back within range again and then started the Carbi.

    So....I have always refused the higher dose of Carbi - using Bugleweed as well as Motherwort (palps) and Lemon Balm (anxiety)....which was helping slowly. However....the hyper state and worry and the gb problem - I just kept getting myself into a state. I took the Carbi more as a back-up in case I decided I had to go ahead with gb surgery.

    I only ever took 15mg of Carbi a day...reduced to 10 and now 5mg. Fortunately my Endo is happy for me to monitor what I do re dosage.

    I didn't like the propananol. I did have headaches to start with when I began the Carbi. It did make me feel sick, bruising was more evident and I did get a couple of mouth ulcers. On 5mg I am fine and I am optimistic that I will be able to work only with the Bugleweed. All this started in April of this year and I was initially told I was looking at a minimum of 18 months to get thyroid within range again....so I did well to do so within 6 months. My next test is in April and I am going to go ahead and have an interim private test in a couple of weeks - so I can monitor that I am ok.

    As you have liver problems then I can see why you are reluctant to start the Carbi....so you might like to look at Bugleweed.

    And, because of my own story, I can only emphasize that whilst you get the thyroid running normally again...take extra special care of yourself and avoid stress/worry at all costs.

    A p.s. because of the waiting game...I have been able to stabilise the gb with acupuncture and herbs.....both of which I am sure have also helped to bring back into control the thyroid and also support the liver whilst on the Carbi.

    Apologies for the ramble but hopefully my case illustrates how what you really want to do might just all go pear-shape because of life's events.

  • Efilwol the Graves causes liver problems as everything in your metabolism is revved up. The carbimazole will reduce the effect of the disease and improve your liver function tests - it did with me. I too felt like you but eventually came to realize that the carbimazole was essential. I was on 20mg, now down to 5mg per day as it was so effective I went hypo. It works for me and I tolerate it well. My endo wanted to do block and replace but I rejected this as i didn't see why I should take T4 when I can make lots of it. Also wanted to take lowest dose of carbimazole and stay in touch with what my thyroid was doing.

  • i was overactive with some awful systoms and put on carbi as a first option to get thing under control.This was some 6/7 years back and it did have some effect over a 12/18 month period however it did not get my function back to normal by way of a solution long term and I ended up having radio-iodine treatment no once but three times.I am currently on 75mcg thyroxine. but carbi is ok but i understand not a long term solution.

  • I have both antibodies and was originally on thyroxine. Then I moved abroad just under two years ago and within a few weeks became hyperthyroid. I stopped my thyroxine and was admitted to hospital with severe thyrotoxicosis (T4 was 63!). An experience I would not wish on anyone. I was put on carbimazole. Since then my dose has varied from 60mg to 5mg. I just couldn't stabilise and felt so ill I returned to the UK.. Finally, I had a total thyroidectomy in December 2012. At this point I was taking 40mg which kept me hypothyroid for the weeks running up to surgery.

    Obviously my thyroid symptoms alone were enough to contend with but the carbomazole also had some very unpleasant effects. Nausea, hair loss, swollen hands and face, itchy skin and a flu like feeling. All these stopped as soon as I stopped taking it. However, there is no way I couldn't have taken it. My decision to have my thyroid removed was the best I could have made for my situation. Although I'm still working toward right doses etc I already feel so much better.

    A private doc put me on echinacea, goldenseal and milk thistle to help liver and rid body of toxins. I don't know if anyone else has tried these or how much they helped but I was willing to try anything that might help my body cope with the drugs.

  • When I was first diagnosed with Graves (I have TED) I felt fine. I would get hot flushes and some other things but in general felt okay, so I refused the carbimazole. My levels kept going up and my TSH was suppressed.

    Then I had an episode, which lasted for weeks. My heart would pound out of my chest ALL night. I couldn't eat, sleep or function at all due to crippling anxiety and panic attacks. I couldn't leave the house due to chronic anxiety. I lost loads of weight as I couldn't eat. I could only cope on small sips of diet milk shake drinks.

    Then I was hit with the darkest depression that sucked all the joy out of my life. I couldn't see the point of living if it was to be like this.

    It took two weeks for the higher level of carbimazole to kick in and I got my life back. It took far more time to feel normal again. I sought out a nutritionist, she told me to cut out gluten, which I have and feel so much better for it. I went to a hypnotherapist to try and sort out triggers for anxiety. Basically I did anything I could think of to get better.

    I would rather die than feel that bad again. The carbimazole gave me my life back. I have been on it for over a year now. My levels are not stable yet thought, which is frustrating. But I feel great. I have more energy now, I can walk the dogs and ride my horse in the same day without having to recover for days afterwards. I sleep well. I do however, have to watch out for stress, as that can fell me far quicker than anything else. I can no longer tolerate it and it makes me feel like a bit of a wimp, but there is nothing I can do about it.

    I feel fine on the carbimazole. I do get mild sore throats every other day or so, which I worry is due to the carbimazole. But I do not get any other side effects. Whether that will change with time, I hope not.

    I would have dearly loved to have avoided having to take medication, and I was find for ages. Then the Graves hit me and hit me hard. If I have to take carbimazole to avoid the horrible symptoms of this disease, then take it I will. Religiously.

  • My racing heart drove me to see my doctor and he was worried about the results of a blood test so he sent me to an Endocrinologist who said my T levels were high but not that high so basically no further treatment. I was not properly diagnosed for approx. 2 years after that and by the time I was I had experienced a 160/100 heart rate, over heating, weight loss, muscle weakness, itchy skin and eyes that nearly drove me mad, no interest in sex and a complete lethargy with an inability to concentrate which was fatal in an Accounting role. I didn't really notice it at the time but my hair was thinning too. I was put on 15mg of Carbimazole twice a day and a beta blocker and my T levels came down to 11 at which time the dosage was dropped to 15mg per day.

    I have had no adverse effects to the Carb and except the thinning hair and itchy eyes, all others problems have disappeared but I am very depressed. My job with a Mining Company was made redundant 5 months ago and I have not had so much as an interview for another role. My relationship is breaking down and I feel isolated and alone, I am so depressed about my finances, my living relationships and my job status and can't seem to focus my mind on any 1 problem long enough to find a solution; or if I do think of a possible solution I can't act, I feel demobilised and do nothing. My thinning hair is an obsession. I feel like I am going nuts ... but I can't tell anybody, I don't know how to tell anybody. I have always been the go to person ready with whatever anybody needs love, money, emotional support ... whatever, but now I need me and I am not there.

    Is it the disease? the treatment? have I always been this way and didn't notice? I feel like I am going nuts a

  • Hey Oscar, if you were put on Beta-Blockers for your cardiac symptoms, have you considered that they may also reduce libido? This is a known side-effect.I gave my propanolol up for an unnecessary extra thing to contend with. I monitor my heart rate carefully & don't exert myself.

    Graves must be really hard to get through without unconditional support. I am grateful I have a wonderful partner who is SO supportive around me & my Graves. I have always been a quick tempered person, so since Graves, I have just been more scatty & stressed, still grumpy (at times). My family of origin have been rather cruel, though, so I can understand how life could be tough without good support.

    The thyroid is responsible for some pretty bad symptoms - I ended up with thyrotoxicosis & I can tell you, even if you were grumpy (as I was occassinally) before hyperthyroidism, you will believe that hyperthyroidism is responsible for very severe changes to a person. My close friend says she thinks I am "hollow" - it is an apt word for how i have felt for nearly a year!

    Have you thought about getting the GP or Endo to refer you to a Psychologist who specializes in this area?

    All the best.

  • As everyone else has said really, I've been on a year due to Graves diagnosis and while the first few months on it were even worse than I started with it is helping and I can pretty much function again. For a long time I ignored the symptoms and I would have fought a teabag if it looked at me funny, I felt totally out of control of anything my body was doing and thought I was having a breakdown as I was a sweating, hateful, trembling shell of myself who couldnt cope with anything yet wanted to fight the world.

    Im not saying its easy but in the end it gives you a life back, I only wish I'd been put on it years ago :)

  • My experience of carbimazole:

    >It took away my terrible symptoms.

    >Lost some hair (approx 20%).

    >Recently after being on it for 1 year I had a reaction and my white and red blood cells dramatically dropped below normal level and GP took me off the drug. Symptoms of there being a problem were: cold sores on my lower lip, lots of spots on face and back, then flu and finally a chest infection.

    I want to go back on the drug again as soon as the GP gives me the all clear to do so when bloods look better. Life pre-carbimazole was intolerable for me. I hate the fact I have to take a drug daily but sometimes our bodies need a helping hand now and then.

    Good luck with whatever decision you make.

  • Hi there,

    I got diagnosed with Graves' on Jan 8th. Have been taking 10 Carbimazole tablets ever since. I found a massive bruise on my thigh/leg/bottom area last Sunday. It was 5x5cm and dark purple. It didn't really hurt and has faded really fast. I've just read that having a bruise is a very serious symptom. Should I go to the hospital or can I wait until the morning when I can ring my doctor? Please help!

  • Hi!

    I know I'm late to reply to this thread but I think all thyroid patients (hypo and hyper) should have their vitamin B12, Folate and Ferritin (iron store) levels checked regularly.

    I was diagnosed with Graves Disease last August and started taking 15mg of carbimazole. I am currently down to a dose of 5mg. I did go hypo which made me very ill, but with adjustments in my dosage my thyroid is all in the normal range now.

    However I was still experiencing a lot of symptoms and was sure it was my B12 which I had been treated for in 2006 but nothing since (should of been having maintenance jabs for life). My B12 was low normal, around 300, so every doctor I saw kept telling me I was fine. My Folate was very low. Luckily I have private medical cover and my Endo agreed to do an MMA test which was elevated indicating a diagnosis of B12 deficiency. I still don't know if I have classic Pernicious Anaemia, although probably yes as it is an autoimmune condition linked with Graves Disease and I tested positive for gastric parietal cell antibodies.

    Check out the Pernicious Anaemia Society website, it has a B12 deficiency symptom checklist which you will see is very similar to thyroid symptoms. I mention Ferritin above as some studies have shown that this can fluctuate alongside your T4 level, so when you are treated for hyperthyroidism and your T4 drops, your Ferritin can drop as well leading to iron anaemia.

    So I would say to anyone who is still feeling lousy even though their thyroid is apparently under control, get the above things checked out by your doctor. I'm not a medical person, it's just something that happened to me and I think more thyroid patients need to be made aware of it.

    With regards to personal experiences of carbimazole, when I went hypo I stopped taking it for 1 week and my T4 flew back up, I felt so awful it's not an experience I want to repeat in a hurry! So I will happily take my 5mg for the time being and hope with fingers crossed for remission at some point in the future.

    Meant to also say that anyone who has had surgery with the anaesthetic Nitrous Oxide is at risk of a B12 deficiency, as it inactivates your stores of B12. A healthy person will replenish this quickly through diet, but someone with an underlying B12 absorption issue won't.

  • Hi,

    What a great site! I am in Australia. I have had really high levels & didn't know. Just thought I was anaemic. I have been on Carbi (as one poster put it!) 15 - 20mg since the end of February. Since early March, I have had violent vomiting attacks that have laid me up for two days or more at a time (seriously eating into my sick leave). My GP (in his kind wisdom) tells me this is a newly formed migrane (I expressed the emphasis on violent vomiting). My Endo (sweet, kind man he is) had a concerned look & was worried that for the three times across six weeks I was sick (total of six days), he thought I was not getting my meds. So, he increased my dose to 10mg twice a day. Now, I am still suffering from violent vomiting. My levels have not reduced, in fact have gone up from the initial 15% drop to a <10% drop from >40 & >19 (T4, T3). I don't know what to do. I spent Mothers Day in bed vomiting while my children dashed in with presents (they have all been SO good). What a journey. ANY SUGGESTIONS MOST GRATEFULLY ACCEPTED!! Thanks, and enjoy a wonderful day.

  • Hi Sonj

    Can I suggest you post a new question as comments can sometimes get missed.. :)

    Louise

    x

  • Hi Louise,

    Good idea. Have followed through on this & there are no answers. It doesn't seem to feature anywhere - my GP & Endo are miffed, but I will find an answer. I think Grave's Disease has some symptoms of making me determined (in a ratty kind of way). I am so sick of being sick!

    X, S

  • Hiya! Just seen your post. When I first took Carbimazole (15mg) the very next day I was violently ill - severe migraine, severe repeated vomiting and diorhea. It was like my body was literally trying to expel something in no uncertain terms from my system. My husband called the Endo in a panic and we were told not to be so daft, Carbimazole definitely didn't cause those symptoms, I must have food poisoning! I stopped taking the drug for a week and then, without really discussing it with the doctor, decided that I would wean myself onto it 5mg at a time. This seemed to work for me, I've been on it 9 months now and do have more frequent migraines, but just have to live with it. No more sickness though. If I change my dose too quickly (up or down) it affects me greatly. I only take 5mg at the moment which seems to keep me stable. There is an alternative drug you could try, I can't remember what it's called but I think they give it to pregnant women? Has your Endo mentioned this at all? Just putting up your dose when you can't actually keep it down isn't really going to help I would think!!! No wonder your levels aren't falling. I am B12 deficient as well which is another reason I get migraines. I hope this helps, lots of Hashi's info out there but not much Graves, imo. x

  • I was prescribed Carbimazole in Jan 2011 after taking them for 4 weeks started getting stomach ache, i told my thyroid consultant about it and she dismissed that it was the Carbimazole, i researched the side effects and found this -

    Vasculitis associated with anti-neutrophil cytoplasmic antibodies has been reported in patients treated with anti-thyroid drugs and especially propylthiouracil. We report here a case of granulomatous eosinophilic vasculitis mimicking gastric neoplasm and peripheral eosinophilia in a 27-year-old man who was treated with carbimazole for 5 months for Graves’ disease. Clinical and morphologic features resolved within 2 months after stopping the drug, suggesting a causative role for the drug. To our knowledge, this is the first biopsy-proven granulomatous eosinophilic vasculitis associated with this drug.

    I told this to my thyroid consultant and my GP, They told me not to read stuff off the Net, by July i was being prescribed sachets of Movicol, box after box, in November i saw a Locum GP i told him about the potential side effects of Carbimazole, he just ignored me and prescribed Omeprazole, On the 17th Dec i was rushed in Hospital with servere abdominal pains given ultra sound scans and discharged 2 days later, on the 26th Dec i was rushed in again, this time they gave me a MIR scan on the fourth of Jan 2012 I was given an operation, they took 2/3rds of my bowel away and gave me an illiostomy, the surgeon told me and the rest of my Family that they had taken a Tumour out and that i would more than likely need radio therapy for Cancer, I was discharged on the 21st Jan, Then 2 weeks later a District Nurse told me that it was not a Tumour after all. and said that it was just irritable bowel, the truth is that it was caused by Carbimazole. all the way through this i had told the Doctors and Consultants about the possible side effects and none of them listened. So if any of you get Stomach problems after starting Carbimazole make sure your Doctor reads this.

    onlinelibrary.wiley.com/doi...

  • Good day. I am glad I stumbled on this forum after having sleepless nights. The experiene I am relating is that of my daughter. We found out that she was hyper at age 13. I was devastated. My mom had it, I had it, my sister had it but we all did much older than 13. My mom and I miraculously was healed! It just went away for me after a couple of years. My sister did the radiation. I was hoping for a healing for my daughter too. We did the neo mercazole and carbimazole. Horrible side effects. Swollen body!! It was suggested by the endocrinologist that her only option is radiation. We were shying away from putting her through that experience although it seems to be a short process but the thought of tabs for the rest of her life is frightening. She is now 19.

    We have stopped her taking the drug and will do a blood test just to see if it was worth taking the carbimazole. Guess not as she has scratch marks all over her body firm the rash and itches. Has anyone experienced rashes and welts from taking this med? Anyone did the radiation surgery and can give your experience then and now? Would appreciate it. Thanks

  • I just wanted to suggest that you do a post of your own as this thread is very old and may not get much attention. If you scroll up and click on 'ask a question' you might be more visible than if you ask here. :-)

  • Hi! I have not been diagnosed with graves yet but I believe I have it after looking into it for about a year I finally disregarded my previous diagnosis of "fructose intolerant" from a gastroenterologist. I just wanted to tell you, the welts may not be from the drug as I have experienced chronic welting and anywhere I itch my skin just welts, and itches so bad its maddening. This is a thyroid symptom and something that randomly developed in me 2 years ago. The same thing may have happened to your daughter and it just looks like the medicine is the cause. I am 22 btw. Hope she finds a cure soon!

  • So. I got diagnosed with Graves Disease when I was 13. I had to take 6 pills of carbimisole per night, sometimes I got really bad migraines, e.g I was walking to school one day and I couldn't see anything, my friend walked up to me saying my name and I had no idea who she was, she then walked me to school, I felt like I was going to faint, then I lost my memory (it came back though) I then went to the doctors and they gave me migraine tablets and I was fine after that. That only happened twice and apart from that I have been fab! They are really good to take because theyre so small, so I can take 6 at a time (: they don't make much of a difference to me, they have been very good(: but if you are taking them and you get a sore throat then call a doctor immediately!! I'm getting sergery on my graves disease in a few weeks and I'm actually only 14 I just made an account to answer your question(: wish me luck, and good luck to you(:

  • hi ive just been diagnose with the same i take 5mg of the carbim once a day and 2x propran , i feel loads better but have really bad trouble sleeping and they did stop may propran and i was having massive palpitations so they put me back on them, and also they say you put weight on im losing weight. and it does make sense to start low as i think if i had started on a higher dose id of been ill im 44 ,nice to know what others are going through

  • I have been since 5th Nov. taking Carbimazole 30mg daily. at first I feel better, not so cranky and feel stronger. but two days ago I started to itch, especially at both hands and legs

    now the third day of the itch which I cannot stand it

    I am not sure if I should go to the doctor before my due appointment

    it's next week

  • Hi I started on 10mg and T4 went down a bit after 4 weeks. Consultant increased to 20mg 6 weeks ago and I've just had more blood tests and seeing consultant today so hopefully will decrease my dose again as I have chosen to try and manage the disease with titrating the carbimazole. I haven't had any noticeable side effects from the carbimazole. I also take propranolol for fast heart beat and this has reduced from 127 initially to around 75-80 with the medication. I feel a little better but still not great, on a scale of 1-100 I am around 35 of being my normal self. It's a long haul I'm afraid. You do need to take the carbimazole in order to get your thyroid under control

  • Well having read all the notes about Carbimazole on line (not on HealthUnlocked) I am getting a bit confused!! I thought I had PMR and am taking Pred, just gone back to 15mg from 10mg as I thought I had a flare up. Following a recent blood test I have been diagnosed as having an Over Active Thyroid and put on 20mg Carbimazole. Many of the symtems are similar to PMR so do I have PMR and THYROID at the same time ? Also the notes on Carbimazole state no Steroids - I am also Diabetic type 2 !! Anybody else had similar problems and being a MALE Patient my wife says I am always confused.

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