Carbimazole aims

[Hammyfish1]

Have been on carbimazole for 8 months. Gp says I have Graves. What are the aims of taking it, I.e. is it to suppress thyroid so that you become hypo and TSH kicks in? My TSH is still well below range. I would appreciate some insight as GP is crap, thanks🙏

[PurpleNails Administrator]

Carbimazole works by stopping iodine being converted to a usable form for the thyroid to make new T4 & T3. If using tritiation method a dose is started and usually reduced after a blood test to see how you respond. The body must use up existing stores and the process can take up to 8 weeks. The TSH can lag behind considerably too. the dose must be adjusted to partially block production and bring FT4 & FT3 into range. If GP is going by TSH alone you will become hypothyroid long before the TSH reflects it.

If the thyroid levels fluctuate very unpredictably then block and replace regimen is used, a high dose will totally block thyroid producing any of it’s own thyroxine and you will take Levothyroxine replace it.

Do you have any current results?

[Hammyfish1 in reply to PurpleNails]

Thanks for this PurpleNails, I didn’t realise the TSH takes soooo long to begin to resolve. The trouble is I have been given 2 conflicting diagnosis by 2 different GPs initially Hashimotos, because radiologist report in January suggested Hashimotos. I then found out from this forum that carbimazole shouldn’t be used for Hashimotos but because lockdown started It became difficult to talk to the GP. Eventually when I asked a different GP in May she said it was more likely to be Graves due to antibodies. I stopped taking the carbimazole a few weeks back because I spoke to a different GP who didn’t have a clue and although my free T4 was low 7.8 ( 6.3-14) she told me to carry on with 20 mg carbimazole and I was beginning to feel very unwell with hypo symptoms . My latest blood result was two weeks ago, after not taking the carbimazole for two weeks, was 15.3 and I definitely had symptoms of overactive thyroid ( 6.3-14) and GP has said to take 15mg. I am on this at the moment and feel fine. Thanks for info, so basically the aim is to keep the T4 and T3 within range, now I know this I can kind of titrate it myself.

[Valarian in reply to Hammyfish1]

You need regular tests - it’s very difficult to be sure of thyroid levels using symptoms alone (I’ve found resting heart rate gives me a broad view, but like other symptoms, this can lag some way behind a change in dose). The endo will also look at the graph of test results over time relative to the dose of carbimazole, if you’ve been titrating it up and down yourself without telling them, it will be difficult for them to assess your results properly. Also, you don’t want to be yo-yoing between the top and bottom of the range.

The aim of taking carbimazole when you have Graves’ is to keep thyroid levels sufficiently suppressed (within range) that your Graves’ may (approx 50% chance) go into remission. Typically you will be taking carbimazole for 12-18 months before they try stopping it altogether. Your thyroid levels shouldn’t fall below range, but it can be difficult to predict what the disease will do and sometimes people do drop temporarily below range. This is usually quickly resolved by reducing (rarely stopping) the medication. Titration is typically gradual, although if you do stabilise within range, you are likely to end up on 5mg/day or less towards the end of your treatment. The important thing at this stage is to keep thyroid levels under control - it’s a period of treatment, so not the same as Hashimoto’s where people will be on levo for the rest of their lives, and are looking to achieve optimum thyroid levels.

It can take a long time for TSH to return to normal, and the endo will initially focus on FT3 and FT4 results. TSH can eventually kick in if you temporarily drop below range, but this isn’t done deliberately. My TSH did kick-in when I was temporarily below range, but dropped again once my thyroid levels were back in range (but suppressed by carbimazole)

This leaflet explains antithyroid eg carbimazole) treatment. btf-thyroid.org/antithyroid....

I would ask for copies of your blood tests and check which antibodies were checked. For Graves’, the tests are

TSI or TRAb.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, with Graves

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Test privately if GP won’t

List of private testing options

thyroiduk.org/getting-a-dia...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

[pennyannie]

Hello Hammyfish

Carbimazole is an anti thyroid drug and the idea is that it blocks your own thyroid hormone production, and that those high thyroid levels you originally experienced that gave you the uncomfortable symptoms start to fall and come back down into range.

Graves is an autoimmune disease and something has triggered your immune system to attack your thyroid. The thyroid is a major gland and when it goes a bit haywire the symptoms experienced can be diverse, affecting you mentally , physically , emotionally and psychologically. Your metabolism may be running faster, with your loosing weight though eating for England, being wired but tired, unable to sleep, exhausted, and possibly suffering with some unusual eye issue and with some symptoms that are considered life threatening.

The NHS give around a 15/18 month window for treatment with the AT drugs during which time the hope is your levels stabilise back down into range, your symptoms reduce, and you find remission, come off the AT drugs and get on with your life.

Some people are treated with Block and Replace where the AT drugs are offset by giving you Levothyroxine as well, so your thyroid levels do not fall too low in the range causing symptoms of hypothyroidism.

It's a fine balance but the idea is to initially block your own thyroid production whilst your own levels are too high, and then slowly adjust down the Carbimazole as your levels fall back down into range thereby not making you too hypothyroid.

Your were hyperthyroid and with too much AT drug you could become hypothyroid - the idea is to try and find the middle lane and keep your metabolism at a reasonable level.

With Graves your TSH can be very low, as we have antibodies that have " sat on " this TSH causing our hyperactive phase and it is imperative that you are dosed and monitored on your T3 and T4 blood test results.

I'm with Graves diagnosed 2003 and had RAI treatment in 2005 and my TSH is stuck down at very low, suppressed levels. It's the nature of the disease, and nothing to worry about and a Graves TSH blood test result looked at in isolation means diddly squat and should be discounted as being a reliable measure of anything, as you need to be looking at the T3 and T4 blood test results for monitoring and dose adjustments.

If all goes well you will find remission and this episode will be just a " one off ' .

The NHS do not know how to control or stop the autoimmune component of this AI disease and simply treat the symptoms by blocking your own thyroid production when an attack happens.

You might like to start reading up on what you can do with regard to calming down your immune system and suggest you start looking at your life/work balance, diet and lifestyle.

Graves is a poorly understood and badly treated, and said to be a stress and anxiety driven AI disease.

I have had to learn of my situation back to front, becoming very unwell some 8 years after the RAI - a treatment I deeply regret - and you might like to read up on the Elaine Moore Graves Disease Foundation website. This lady also has Graves and went through RAI and finding no help with her continued ill health started researching her own disease and now several years later there are several books and a leading, well researched and respected website on all things Graves for all Graves patients worldwide.

This website is amazing and I have managed to put myself back together again, a bit like Humpty Dumpty, please do your research, and take an active role in your treatment and options and ask questions and check back on here when not sure what it all means.

[Hammyfish1 in reply to pennyannie]

Thanks Pennyannie, tbh it’s all been such a struggle because of the conflicting diagnosis I have been given ( see reply to Purple Nails) but I definitely think I have Graves because my body responds to the treatment. I am trying desperately to get on top of this disease, thank you for info!

[pennyannie in reply to Hammyfish1]

Hey there,

I'm sorry but I thought you had a diagnosis of Graves and had positive medical evidence of high TSI or TR ab antibodies.

You can't presume you have Graves because the AT drug works - it blocks your thyroid hormones irrespective of the reason for the hyperthyroidism.

Initially Graves and Hashimoto's express the same but Graves is constant overactivity whereas the hyper phase in Hashimoto's is transient, and that is why you need the Graves antibodies tested, as the treatment for Hashimoto's is not with AT drugs.

Your doctor can action a blood test, and how I was diagnosed back in 2003.

[Hammyfish1 in reply to pennyannie]

Thyroid peroxidase antibodies were tested in January and were 333 (0- 60) and TSH receptor antibodies were 5.5 (0- 0.9). I have asked GP to refer me to endo so I may get clarification then because it seems my bloods are very awry!

[pennyannie in reply to Hammyfish1]

I think you'll find those results from around 5 months ago confirm you have both Graves and Hashimoto's running at the same time - it can happen - and believe the Graves will be treated as the priority and so treated with AT drugs which is what has happened.

[Fruitandnutcase]

Hi, I’ve been in remission from Graves since 2013 but I was treated with block and replace where you are given a massive amount of carbimazole to wipe out your thyroid production then at a certain point - in my case it was when I’d had too much and went hypo but that’s another story - the endo adds in levo thyroxine in ever increasing amounts until your bloods are where they want them to be then you will be told to stop the lot. I was taking 40mg of carbimazole and 100mg of levo thyroxine one day - saw my endocrinologist, then next day I was taking nothing at all.

I was told that block and replace was the ‘quick treatment’ and it took exactly a year before all treatment was stopped.

It sounds as if it is your GP who is treating you - have you seen an endocrinologist? Normally with Graves you see an endocrinologist at a hospital.

You need regular blood tests and should always ask for a copy of the results including the lab ranges used. As others are saying you need vitamin D and B12, folate sand ferritin to be well up in their ranges too. I gave up trying to get these Dane - especially vitamin D! So in the end I gave up on the doctors and used Medichecks home finger prick tests. Much easier that way.

So always ask for a copy of your results ‘for your records’.

My pharmacist came out from behind the counter to tell me to take high strength vitamin c along with the carbimazole whic I always did.

I’d say read as much as you can about your condition, look at how other people on here have got on and take an active part in your treatment - don’t just let them *do* it to you and don’t feel pressured by doctors to do anything you don’t feel comfortable with. Good luck with it all.

[Hammyfish1 in reply to Fruitandnutcase]

Thanks Fruitandnutcase, it’s so reassuring to know you have got through this!

[madge1979]

Hammy don’t be afraid ..

The Carbimazole treatment worked very well indeed for me .

I did not use the TITRATION method as I had no need for Levo or Thyroxine

I took 20mgs if Carbimazole a day for a month or two... it worked fast

...and then took 10 mgs

Then as my levels all were looking good , went down to 5 mgs.

... then 2.5mgs

I lingered for a while in 2.5 mgs so that it wouldn’t be an abrupt 🛑 STOP

It worked a treat !

But .. that is not where is stops !

This is an Auto Immune Disease .. and if we understand that around 70/ 80% or more of our Immune System is in our Gut ... then that is where we must address !

To keep the Precious Thyroid Gland and metabolism in balance You must start some sort of self maintenance programme.

ie... replacing all that your overworked body has lost whilst you’ve been suffering .

It requires knowledge ( which is exactly why you’re in here ) and it requires a will to overcome your disease with or without your Doctors ( in some cases ) bad advice

You need to become proactive in your treatment Getting bloods done regularly and keeping paper records of them .

Ask all the questions you can think of on here and you’ll get great answers and direction from the best people ... the Sufferers ... who’ve all been there in one way or another

.. unless a Doctor has had Graves or any other Thyroid disease .. then I don’t believe he/ she can help us !

.. so we , in many cases , go it alone

Be brave you can do it ...

I did ..

.....and believe me I was at the end of my road

The Best of Luck to you ...

Luv Mx🌹

[Hammyfish1 in reply to madge1979]

Thanks m! Beautiful words of support that’s made my day! I’m trying my best with gut improvement, have been making my own sauerkraut for months, amongst other things! I definitely need to keep on top of my vitamins though.

[madge1979 in reply to Hammyfish1]

Hammy ..If you’re interested in which vitamins, minerals and Nutrients I continue to take to improve my Thyroid and immune health PM me .. and I’ll tell you what’s kept me Euthyroid for years now.

[Angel20]

The issue I have with Endo's they treat everyone the same not bothering to undertake all the tests required before prescribing carbimazole. They are too keen to start people with Graves Disease and hyperthyroidism on high dosage carbimazole, my opinion should be start on a low dosage see the blood test results and make slow adjustments. When starting on high dosage of carbimazole if not monitored carefully from hyper people go to hypo. The Endo's have a script they follow this standard for everyone. I would like to hear how the carbimazole has made you feel, side effects, did anyone get really sick ending up in the emergency room. How many deaths carbimazole contributed, there is no data anywhere to be found on the internet. I was told I have Graves Disease\hyperthyroidism 3 years ago. I have seen the Endo's to start me on 10mg carbimazole I did not because the blood tests that were done TSH, FT4 nothing else. If I am going to consider trying carbimazole I would want all the tests prior to taking this toxic tablet. I feel ok, I was told my body had adjusted to the low TSH and high FT3 and FT4. I do get tired sometimes however I do not have palpitations, I do not sweat, generally I am ok. I am highly suspicious of carbimazole I really do not know whether I want to go down this route, it is not a permanent solution relapse does happen then back to square one again. I wish you luck.

[Hammyfish1 in reply to Angel20]

Hi Angel, I haven’t had a problem taking carbimazole. In fact I took myself off it in the summer because I didn’t trust my GP as she didn’t know what she was talking about and said I had Hashimotos but had put me on carbimazole. Within two weeks of stopping the drug I felt terrible, palpitations, sweating, diarrhoea, anxiety etc. Anyway I went back on it when blood results again showed TSH suppression and high T4. I felt better after a couple of weeks. I have since seen an endo ( who confirmed Graves) and my dose has come down to 5 mg, TSH is coming up and T4 in range. I feel positive. However I have been trying to stick to a good diet with probiotics and prebiotics amongst other things. I did have a problem with hair loss in the summer but I think it was vitamin deficiency because it rectified itself when I started to eat properly again and start various supplements. It may have been menopausal because I also started using plantur hair shampoo. Who knows what made it stop falling out?!! Anyway, as I say I feel better generally. It all started with stress and a virus last year but I have learnt to look after myself because I don’t want this disease to take over my life! Hope you are well!

[Angel20]

How long did it take for you start taking 5mg carbimazole and what was the initial dosage

Thank you

[Hammyfish1 in reply to Angel20]

I started on 20 mg and was on that for about 3 months, it was then reduced to 15 mg and I was on that until beginning of September, it was then reduced to 5 mg mid October. Although I did say I didn’t have any side effects from carbimazole, I was mildly neutropaenic ( I didn’t feel unwell though) which was why it was reduced to 15 mg. However blood results have never indicated neutropaenia since. I started treatment at the beginning of this year.

[Angel20]

Thank you

The Endo has been trying to get me to take carbimazole 10mg per day the reason being I do not have symptoms apart from a very fine hand shake and it is not every day sometimes I feel the tremors in my hands and most of the time I do not. I am not afraid to take carbimazole I am afraid of the serious side effects that I could get this is the issue with me. I really do not know what to do. I was diagnosed January 2019 but without my knowledge I had hyperthyroidism since 2017.

If I am going to agree I would want 5mg and no more as I do not feel unwell for the past 4 years I do know the Endo will try to persuade me to take 10mg and this will be an issue fir me.

Thank you for your answer x

[Hammyfish1 in reply to Angel20]

I can understand your reservations, particularly if you feel ok. I must admit I struggled with taking the doses the GP told me to take because she didn’t know what the objective was and didn’t refer me to an Endo for 9 months. It was only really this group that helped answer my queries. How are your blood results?

[Angel20]

My last blood tests were done just before the first lockdown. I am scheduled to see the Endo at St. Georges hospital on Thursday, I will take it from there. The thing is I am having peer pressure from my family to see the Endo, so reluctantly I will attend the appointment. I know very much about hyperthyroidism I have been studying it for 2 years now so I will decide also what is right for me. I am prepared to give it a go with carbimazole but only in low dosage. I have also read that when carbimazole is taken with l-carnite the tsh goes up, however regular blood tests must be done to ensure the person does not go Hypo. I will let you guys know how I proceed.