Coming off carbimazole

[Linanne]

I wonder if anyone with hyper can offer help or advice? I am trying to come off carbimazole after almost 2 years to see if I'm in remission but every time I come off or even cut down, I get symptoms of agitation, faster heart rate, odd sensations in my head. Is this an immediate return of hyper or is it common to have a resurgence of these symptoms prior to a resettling? I don't know whether I have Graves' disease or hyperthyroidism as was never tested for antibodies. Thank you for any light you might be able to shed on this.

[duster]

Hi Linanne

I have graves for over 4 years now and taking carbimazole long term.

I was on it for a year initially then it was stopped I knew nearly immediately that I would have to go back on it. My first symptom is my legs ache, But stayed of the carb for 3 months before going back on it again. My endo is suggesting that in an years time I try coming off again, but I suffer badly with my eyes and have had no trouble on the carbimazole so am very reluctant. Hope everything goes well for you.

[Linanne in reply to duster]

Thanks, Duster. There are some frightening dilemmas involved in having this condition, that's for sure. Something I've picked up from studying this forum is that RAI can induce eye disease, so I understand your reluctance to come off the drug very well.

[morena]

Hi Linaane...Im not hyper but my daughter is.....and it sounds as if you still need the carbimazole to me. These are symptoms of hyperthyroid/graves.

[Linanne in reply to morena]

Thanks, Morena. I hope your daughter has beneficial treatment.

[Neontiger]

Hi linanne! Very interesting question- I don't have an answer but I have the same situation. I was diagnosed as extremely hyper 2 years ago and put on carbimazole. I went hyper again when I reduced the dosage so I had RAI in April. My endo has tried to stop the carb twice since then but both times the symptoms you describe came back. I complained at length to him about this as I felt so blooming awful again. He just restarted the carb (which took about 6 weeks to show any effect). I'm currently taking 5mg carb a day and am mostly feeling okay- I have bad days where I still feel terrible again. I've just had more bloods done which show me to be in the normal range so my ends wants me to stay on the 5mg until my next appointment in January. I'm quite confused by it all as if my bloods are showing as normal but I'm still taking the carb then surely this means I'm not fixed yet?! Like you I don't know if I have Graves or not because I wasn't tested but I do have a lot of trouble with gritty, dry eyes and I can't wear my contacts for very long now. You have my complete sympathy- this is an AWFUL way to feel. I hope you get it sorted soon.

[Linanne in reply to Neontiger]

Your situation is terribly confusing as RAI is supposed to be last resort when the drug fails, not some kind of extra. I think that my next step will be to find out if I have Graves. I also wasn't tested for antibodies though I asked but was fobbed off with blah-blah about false positives or false negatives or possibly both. I understand from a book by Mary Schomon (Living Well with Graves' Disease) that the test is actually reliable enough. I hope you find your way through this bewildering time.

[glo42]

Hello Linanne

I also have overactive thyroid and this was diagnosed April 2011. I was given carbimazole and have come off this twice and after 3-4 months the hyper symptoms returned. I was told I needed to have RAI or surgery but I keep refusing as neither is what I want. It's my body and my choice but I have real indifference attitude from doctors at hospital out patient clinics.

My Carbimazole is due to be stopped at the end of this month and I am hoping that my overactive will have calmed down and righted itself after almost 3 years BUT I am already preparing myself to stand firm and refuse the RAI/Surgery options that I know will be pushed at me at my next thyroid clinic session.

I do hope that your own circumstances will improve and send you a gentle hug right now. xx

[Linanne in reply to glo42]

Thank you and virtual hug to you too. I also have met with indifference, also dogma and a degree of bullying. Lies as well: my endo insists that RAI is safe when, in fact, the risks and consequences can be very serious and at the very least, switch hyper for hypo, also notoriously badly treated. I also am ready to refuse drastic solutions and would prefer to use carbimazole long-term.

[Silver_Fairy in reply to glo42]

I have Graves (diagnosed about four years ago) and like you have refused RAI (I have Thyroid Eye Disease) and surgery. I have been on Block and Replace for 18months, which was awful and then when it was stopped I immediately had symptoms of Graves again.

I have for the last couple of years been on Carbimazole and Im now down to 2.5mg every 4 days. I have a phone appointment on Tuesday with my Endo when Im sure she will try again to get me to have surgery.

[Linanne in reply to Silver_Fairy]

I don't understand why RAI is pushed on to people with TED when it can worsen that condition. You've done well in getting down to such a low dose of carb. I'd like to try but very gradually.

[Silver_Fairy in reply to Linanne]

I did it very slowly over a long period (with the blessing of my Endo, actually I think she was humouring me!)

[Heloise in reply to glo42]

Glo, my son was on methimazole for a couple of years but he is doing well now almost ten years later. I know he stayed away from caffeine, etc., but I wonder if you could try all the things that flatten or slow down metabolism? I know soy and cruciferous vegetables are on that list. I wonder if those kinds of things would do any good.

[glo42]

Is methimazole similar medication to Carbimazole for hyperactive thyroid? All interesting posts. Any thyroid conditions make life a roller-coaster experience but this site is so helpful and it reminds us that we are not alone (although I wouldn't ever tell the Endo this!). Take care everyone and be kind to yourselves.

xxx

[Linanne in reply to glo42]

My understanding is that methimazole is the US brand name for carb but Heloise will know for certain.

[helvella Administrator Thyroid UK in reply to Linanne]

No - that is not the case.

Carbimazole is converted into methimazole. Seems that conversion is nearly complete.

I do not know why the USA ended up using methimazole whereas the UK uses carbimazole.

[Linanne in reply to helvella]

Thanks for this clarification.

[glo42]

Yes I thought that might be the case Linanne. I hope that you get a decent nights sleep and that tomorrow will be a good day for you. xxx

[misky]

Hi, I also have Graves (diagnosed in 2012). First of all, how is it possible you don't know if you have Graves?!?!? Your endo should test you for that. It sounds ridiculous to me he/she doesn't want to test you for it. If necessary, have the test done privately. It is very important to know if your hyperthyroidism is caused by an autoimmune disease.

When I was diagnosed I was extremely hyper (FT4 > 100; heart rate 196; not funny), but I quickly started to feel better on Carbimazole. My endo decided to give it a try (remission) after one year and since then I have been in remission (almost 2 years now). In the first months after stopping, I didn't feel well and had all kinds of hyper symptoms, and on top of that I had weird allergic reactions, low grade fever, and other strange symptoms. But every time I got tested, the FT4 and TSH were in range, so I just moved on and waited until I started to feel better. It took my body about a year to get "recalibrated" again, but now I feel fine, I exercise regularly, I eat well. I think your body needs to find its balance again. However, if your blood shows you're hyper again, then it's a different story of course.

I know some endo's test for antibodies before stopping the medication. They use it as an indicator to see how active the autoimmune disease still is.

Talk to your endocrinologist. You should get better care. All the best!

[HenriC in reply to misky]

Nice reply. I was diagnosed 5 years ago with severe hyper-thyroidism, and have since been on carbimazole and levythyroxine to control it. After 5 years I'm about to stop all medication, to see if I go hyper again or not.

I am a little anxious about it, as 5 years is a long time to be on medication, but am ready to give it a go. I am wary about the side effects of coming off the medication, which your post has helped me prepare for.

I am hopeful I will be ok having made some changes to my lifestyle - I quit smoking 5 years ago and haven't touched a cigarette in 20 months, I eat a healthier, more organic diet, and I'm not as stressed generally.

I've definitely tried to change my overall outlook in life, and feel stress/outlook is possibly a factor in whether someone has issues with hyper-thyroidism or not, but that's just my own theory, doctors of course would dismiss that offhand. But of course doctors can't actually say for sure why someone gets the disease, which is highly dissatisfactory.

[misky in reply to HenriC]

Hi Henri,

I am still in remission, so I hope that will give you an extra bit of hope and encouragement. It's been over 7 years now since I stopped the medication and I'm doing fine. I read somewhere that the goiter size is an indicator for the chance of remission: the smaller the goiter, the higher the chance for remission. I had indeed a very small goiter while sick, so in my case it applies. My endo said at the time, when I asked him if I should avoid certain foods or things like that, that he only had one recommendation: try to avoid stress (as you already discovered yourself). Stress is a major trigger for autoimmune diseases. While we cannot always control the stress in our lives (I moved country 3 times and lost my father in the last couple of years), I do try to manage it regarding my work and other factors that I know stress me out a bit (I'm an introvert, so too much social interaction makes me unhappy). I would advise you to determine the stress factors in your life and try to minimise them as much as you can.

Five years is a long time to be on medication, I hope you will be/go in remission and enjoy a medication-free life for a very long time to come.

Good luck!

[Linanne]

Thank you for this, Misky - it's encouraging on many levels. I will press for a proper diagnosis but my endo is very dogmatic and impervious, so may have to arrange things for myself or maybe see if I could be referred to a different hospital.

[sandragrimes]

I had graves desease I was in remission for 15 years it came back I was on carbinmazole anyway nearly 12 months I had my hospital appointment Wednesday I was on 10 mg of carbinmazole in the mornings I was told to stop taking it completely as I'd been stable since march 'I've got to have a blood test in 5 weeks and to return too the hospital in 6 weeks does anyone no us normal for them to just stop carbinmazole from 10mg to nothing

[HenriC]

Nice reply. I was diagnosed 5 years ago with severe hyper-thyroidism, and have since been on carbimazole and levythyroxine to control it. After 5 years I'm about to stop all medication, to see if I go hyper again or not.

I am a little anxious about it, as 5 years is a long time to be on medication, but am ready to give it a go. I am wary about the side effects of coming off the medication, which your post has helped me prepare for.

I am hopeful I will be ok having made some changes to my lifestyle - I quit smoking 5 years ago and haven't touched a cigarette in 20 months, I eat a healthier, more organic diet, and I'm not as stressed generally.

I've definitely tried to change my overall outlook in life, and feel stress/outlook is possibly a factor in whether someone has issues with hyper-thyroidism or not, but that's just my own theory, doctors of course would dismiss that offhand. But of course doctors can't actually say for sure why someone gets the disease, which is highly dissatisfactory.

[pennyannie in reply to HenriC]

Hey there HenriC

The post you have replied is 4 years old :

However, if you don't know of the Elaine Moore Graves Disease Foundation website you might like to dip in - I believe it is the most well rounded website that I have found :