Stopping Carbimazole

[Cinka]

Hi all. I have been taking Carbimazole since being diagnosed with Graves disease. My endo said my thyroid levels are within normal and to stop the Carbimazole. I have been taking 10 mg daily. Within a week stopping , my heart rate has accelerated again .. should I have tapered the Carbimazole rather than stop suddenly? Any advice? Thanks!

[PurpleNails Administrator]

How long have you been taking carbimazole?

Some manage fine stopping abruptly and stay in graves remission after ceasing. I always think it better to reduce slower, having a 2-3 months on 5mg per day even taking every other day.

Was your Graves confirmed with either positive TSI or TRab? There are other causes or hyper, doctors don’t always correctly establish the cause and conclude Graves if TSH is low.

What are you blood test results? Do you have copies or online access? Put your results and lab range then we can advise further.

[Cinka in reply to PurpleNails]

Hi and thanks for replying. I am waiting for my results to be sent to me. I'll get in touch again when I receive them. I was concerned that my heart rate had increased within a week of stopping. I started Carbimazole 10 months ago. Blood test 2wks ago and off C'zole 1 week 😊

[PurpleNails Administrator in reply to Cinka]

It’s usual to start on a higher dose and then adjust dose downward to keep your levels in range.

Doctors usually aim to maintain treatment for 15 - 18 months. So being on 10mg for 10 months is not the standard approach & It looks like they rushed the treatment.

Are the symptoms you are having now similar to when you were diagnosed? They do sound like typical hyper symptoms.

It may be you levels are fluctuating slightly causing symptoms which might settle.

If I adjust carbimazole in too great a dose I feel symptoms.

Would your GP or specialist retest you now to check your levels are currently?

Be prepared for your doctor to suggest either surgery or radioactive iodine to prevent you going hyper again. Has this been discussed with you?

[Cinka in reply to PurpleNails]

I started on 30 mg end of January and reduced down to 10 mg after a month. Has to go back up to 15mg, down to 10, up to 12.back to 15, down to 10 end of May then told to stop last week. I must admit that I was keen to stop as soon axs I could. Blood test in 7 weeks, now. No other treatment suggested. Do you have any thoughts? All I know is TSH is 12. Don't have other results at the moment. . 😊

[PurpleNails Administrator in reply to Cinka]

The altering dose is usual & history making more sense now. A TSH of 12 is very high. When hyper it usually shows as <0.01 or undetectable or suppressed. Mine has remained low which can happen after being hyper for period of time. The TSH isn’t adequate measurement it’s a pituitary hormone not a thyroid hormone. you need FT4 & FT3 tested.

Your thyroid levels (FT4 & FT3) are likely very low with TSH of 12. Over 10 considered overtly hypothyroid. No wonder the carbimazole it was stopped.

Try to arrange an earlier test. There are private options if Doctor unhelpful.

Important to check which antibodies have been tested.

[Cavapoochonowner]

Hello there, I was diagnosed with graves disease 2018.I was on carbimazole only at first, but now I am on carbimazole and levothyroxine ( called block and replace) Last September my endo said I was euthyroid and my levels were in range so I could see if I was in remission. He told me to stop all tablets at the end of September but to request a blood test if I recognised symptoms coming back.Within 2 weeks I was hot, felt fidgety, had racing heart and was losing weight.I requested a blood test and my T4 was back up in the high 60's.I was restarted on my medication and am still on it.I am scared to come off it again as I ended up in A and E with a heart rate over 100 and stroke like symptoms which turned out to be a migraine.(couldn't get my words out and visual disturbance)My endo said that stopping tablets cold turkey is how they test for remission. I am struggling to get right Levo dose at the moment and am waiting for ENT appointment to discuss a thyroidectomy. Some graves sufferers on here have been titrated down slowly on their tablets but that has not been my experience. I also have the complication of thyroid eye disease(TED)which has flared up again and my opthamologist says it is imperative to try and get my thyroid under good control.That is one of the main reasons for a thyroidectomy for me.Hope this helps in some way.

[Cinka in reply to Cavapoochonowner]

Yes, that does help. I am due to have rpt blood test but not for 8 weeks. Think I need to get in touch with them! I hope things improve for you. Thank you xx

[Cavapoochonowner in reply to Cinka]

Yes I would get in touch straight away.You know your own body and I presume if remission hasn't worked it will only get worse over time.My endo was quite surprised at my high levels in only 2 weeks.Good luck.

[Cinka in reply to Cavapoochonowner]

Thanks for the advice. 😊

[pennyannie]

Hello Cinka ;

Graves is an autoimmune disease and if your Graves antibodies are over range and test positive it is pointless coming off the AT medication.

This immune system disease takes as long as it takes and I'm afraid there aren't really any short cuts.

The AT drugs block your T3 and T4 rising and basically put you in a holding pattern, like an aeroplane, on auto pilot, waiting to come into land, with the endo controlling the gear stick and hopefully maintaining your T3 and T4 levels at levels that allow you some quality life during this phase of this AI disease.

There are forum members here who stay on AT mediation long term and for several years and read worse cause scenario we are looking at around 4- 11 years for Graves to burn itself out.

[Cinka in reply to pennyannie]

Something for me to think about .. Thanks, pennyannie.

[pennyannie in reply to Cinka]

If you haven't found the Elaine Moore Graves Disease Foundation it is certainly worth dipping into - read Elaine's story, and check out the more holistic and life style options you may like to consider for yourself.

There's usually a genetic predisposition and likely someone a generation away from you with a thyroid health issue.

Graves is said to be stress and anxiety driven AI disease and you can't really remove all these from your life, but it might help to reconsider life style and choices and find time to enjoy your time doing what you want, and possibly shift the work/life balance??

[pennyannie]

Hello again :

Just thought you might like this research paper - apologies if I'm duplicating :

pubmed.ncbi.nlm.nih.gov/338...