Carbimazole : Hi I was wondering as anyone been... - Thyroid UK

Thyroid UK
101,235 members115,492 posts

Carbimazole

Hi I was wondering as anyone been on carbimazole longer than 18 months ? My consultant said I have to come off mine in July and go back for bloods and see him in September, now if I’ve gone back overactive only two options he said which is rai or thyroid removel, I have Graves by the way, but he said I can’t be on carbimazole longer than 18 months 🤔

15 Replies
oldestnewest

Hello Ginger-bread

There are many people on here who have been on Carbimazole much longer than 18 months and doing ok, hopefully some will reassure you later on today, or tomorrow.

I was told the same information in 2004 and was given RAI - I wasn't even given the option of surgery. I have been very unwell and wouldn't wish my last 5 years on anybody else.

I too am with Graves and after the RAI treatment I still have Graves but now, also thyroid eye disease and hypothyroidism to manage and am now self medicating as I am unable to access any sensible assistance through the NHS.

Graves is an autoimmune disease and as such it's for life. There is probably some genetic predisposition maybe a generation away from you, and read it can be triggered by a sudden shock to the system like a car accident or unexpected death.

Swopping one set of symptoms for another, swopping an overactive thyroid for an underactive thyroid is somewhat simplistic, especially when you can't access the relevant hormone replacements on the Nhs.

Professor Toft the eminent endocrinologist is now not referring his Graves patients forward for either thyroid ablation or thyroid surgery, preferring to keep them on anti thyroid medication, irrespective of their age or number of recurrences of hyperthyroidism.

His full article is entitled Thyroid Hormones Replacement - A Counterblast To Guidelines and is available on this website :- December 2017 Journal of the Royal College of Physicians of Edinburgh. The whole article is very interesting but this particular " gem " is on the third page, left hand side, one third down.

You might like also to read up about Graves Disease as it does appear to be a poorly understood and not well researched autoimmune disease.

Elaine Moore has Graves and was treated with RAI in the late 1990's. She found no help or advice after treatment, so wrote a book to help others, Graves Disease A Practical Guide.

She has now a Graves Foundation website in the States and very much like this amazing platform. there is free exchange of information, it is well researched and well respected. It also covers all aspects of the disease including diet, life style considerations, relaxation, natural alternatives and so much more.

It does seem we need to become our own best advocates and suggest you read up as much as you can, to be better placed to make informed decisions about your future health. The Nhs is target driven to reduce outpatient waiting times, and not patient centred, which if dealing with Graves can be somewhat time consuming and difficult for some endocrinologists to manage.

3 likes
Reply

Thankyou so much for your reply, no one in my family has Graves that I’m aware off, although I’m going through the menapause and I really think it has something to do with that, I really don’t want the rai treatment as I’ve heard so many different stories about this but don’t really want surgery neither, and I think they would want me to have the rai treatment first to see how I went on with that, I’m hoping once I stop my medication that I don’t relapse and then I won’t need to have it.

Reply

I know the RAI is the cheapest option, a 20 minute outpatient appointment, and a discharge back out into primary care.

Please read up all you can, it's your health, your decision. I wonder if the endo would put themselves through RAI ? It's a toxic substance that burns your thyroid, reducing it's ability to function, and is known to effect other organs and glands in the body.

Please do your research.

It might be a good to confirm that you have been tested positive for the TRab and or TSI antibodies, as without this test it may not be Graves Disease, as you say you are going through menopause.

2 likes
Reply

Hi thankyou yes I have been tested and have Graves’ disease.

Reply

Have you had your vitamin D, folate, b12 and ferritin levels tested?

Low vitamins are extremely common with Graves or Hashimoto's

Are you on strictly gluten free diet? Or tried it?

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

1 like
Reply

Is it safe to be on Carbimazole long term? This question crops up frequently on the forum. Like pennyannie says read everything you can to make up your own mind. I have GRAVES and TED and have been on Carbimazole for 3 years and feel great. My consultant has no problem with me being on it longterm. If my Trab count goes down some time in the future I can have a trial off medication to see if I am in remission. If not I can go back on meds. I read extensively before deciding Thyroidectomy and RA were not the way forward for me. I found no evidence to back up long term carbimazole being harmful. There is always the small risk of agranulocytosis whether you are on it short or longterm. I remember one paper saying there was less chance of this at doses 10mg. or under. Elaine Moore recommends not just to stop medication abruptly but to titrate down to a very low dose. My consultant thought I would relapse as my Trab was 16. Have you had Trab measured ?

Reply

I’m on 40 mg carbimazole and never had a problem, a couple of sore throats and bloods taken but nothing serious just viral, I was given block and replace as the 40mg sent me under active about 9 months ago, which was 100mg thyroxine and 40 mg carbimazole, but I went over again so was taken off thyroxine and just left on carbimazole, why he didn’t just cut the dose down I really don’t know, I’m of to my doctors tommorow as I really don’t like my consultant I was nearly in tears when I last saw him in April, and no i haven’t got the results but can get them at the doctors tommorow. Thankyou

Reply

Yes if the 40mg. sent you underactive I too would be asking why he didn't reduce it as this is what normally happens. I started on 20mg. Which was titrated down slowly to 5. Then as I tend towards HypoT I was changed to block and replace 20mg. Plus 50mcg. Levo. My endo thought it reasonable that I wanted to be on longterm meds. but at the lowest effective dose. Why be on 40 if 10 will do ? He was prepared to monitor me carefully as I worked towards this. Hope your endo will do the same. He set up a system where bloods were drawn at my GP surgery. I emailed him the results and he emailed me back any changes. All this on the NHS ! He was prepared to experiment a bit. I am so grateful to him .

1 like
Reply

Hi there! My endo has a patient who has been on Tapazole for 11 years - with no ill effects - so it’s really a matter of how you feel on it and if you experience side effects or not. I myself was on Tapazole for 2 years with no side effects and a good result but had other problems that necessitated a TT 4 months ago. Hope this helps and wishing you all the best.

2 likes
Reply

Thankyou, I really can’t understand why he’s not cutting them down to start with instead of straight off them altogether

Reply

Me neither - I was on half the normal dose and responded well. It’s worth a try - and not to rush into more permanent solutions that sadly are not always solutions.

1 like
Reply

Your endo sounds crazy.

To go from 40mg to zero is just madness. It could make you really sick.

You should change doctors

2 likes
Reply

One other thing.

40mg is a pretty high dose to be still on after 18 months.

Usual and safe practice to try for remission, is to already have titrated down to the lowest maintenance dose, like something around 5mg.

To still be on 40mg after 18 months, would indicate disease activity level is still high.

In fact, just the fact that your body is still comfortable with 40mg, would be indicative that its not yet time to try for remission.

And in any case, u don't like your endo as well correct, so please get a change. He shouldn't be seeing thyroid patients

1 like
Reply

Thankyou for the reply, I’m off to see my gp today and ask him for a another consultant as I’m not happy at all with the one I have, im so shocked he said stop taking the carbimazole in July and then see him September, I thought he really would have cut them down, I did get tested and do have Graves’ disease

Reply

Sorry what was your TraB or TSI results?

In regular Graves cases, titrating downwards in tandem with blood test results is the way to go.

The cutting down is usually the biggest in the beginning stage after diagnosis where your appropriate dosage is being worked out.

If you are feeling well on a relatively high dose of 40mg, I suggest you have your TraB and/or TSI tested on a regular basis. These are disease activity indicators, and for you to try successfully for remission, these have to be in range or zero

2 likes
Reply

You may also like...