Carbimazole

[Sheryl5013]

Hi there!Could anyone tell me how long they have been on carbimazole for?Thanks

[purple64]

Hi I've been on it for 20 months now and will be on it for at least another 6 months

[Sheryl5013 in reply to purple64]

So long term dosing or opting for other treatments if relapse?

[purple64 in reply to Sheryl5013]

Long term dosing they won't do RAI as I already have a problem in my left eye . Mind you that was at the last appointment I don't seem to see the same person each time at the hospital 🙄

[asiatic]

3 years on various doses between 5 and 20 mg.

[Sheryl5013 in reply to asiatic]

So are you now on 5mg long term?

[asiatic in reply to Sheryl5013]

It 's a bit complicated. I will sumerise. If you want more info get back to me. I was hyperthyroid and started on 20mg which had to be titrated down to 5mg. After a diagnosis of Graves I was put on block and replace. 20mg Carbimazole and 50mcg. Levothyroxine. As I will probably be on this long term I am working with my Endo to reduce this down to the lowest dose that will still be effective in keeping me feeling well.

[Sheryl5013 in reply to asiatic]

My consultant only kept me on carbimazole for 7 months first time, relapsed after 18 months then 9 months with relapse after 13 months.This time he’s letting me stay on a 5 mg maintance dose (12 months so far) as I’ve read that if you stay on for about 18 months you have a better chance of no relapse.. think we’re both being optimistic 😉

[Valarian in reply to Sheryl5013]

7 months is pretty quick if you were diagnosed with Graves' (as opposed to other causes of being hyper) - most people here seem to be told 12-18 months. My endos said from the outset that their initial target was 12 months, extended to up to 18 months where people hadn't been within range for six months by the end of the twelve month period....and in some cases, inclusing my own, even beyond that. They've also said that the higher the dose of carbimazole required to bring thyroid levels within range, and the longer it takes to get there, the lower the chances of achieving/maintaining remission (which doesn't mean they won't give it a shot).

I guess duration of treatment will also be affected by the initial dose of cabimazole, especially with titration - it will take longer to titrate down from 40mg/day or more than it will from 20mg/day.

If you feel well on the 5mg maintenance dose, you could ask to remain on this.

What were your initial thyroid levels ?

Note, the NICE CKS guidelines do mention 6-18 months !

[Sheryl5013 in reply to Valarian]

My initial levels on diagnosis where:

T4 39.2

T3 17

TSH0.01

TSH receptor antibody 0.6

TPO 228

That was back in 2014.Consultant won’t re test antibodies.

My latest results on 5mg carb( on which I’m taking every other day) are:

TSH 1.84

T4 13.8

T3 4.5

He’s never kept me on carb long as I respond pretty well but have now had 2 relapses😬

[asiatic in reply to asiatic]

Do you have Graves ? If so everything I have read says you should not have been taken off Carbimazole so soon. You should have been titrated down to a much lower dose 1mg or less. Did they ever measure your antibodies ? Thyroidectomy was mentioned but as I am 73 balance of risk was in favour of long term drug treatment. Long term may not be that long ! I have TED so RA treatment not suitable. It is a personal choice.

[Sheryl5013 in reply to asiatic]

Yes.I got diagnosed in 2013.I had a bad dose of flu which triggered the autoimmune response.Had antibodies back then but he won’t re test as he says you always have them.Im looking into private tests..I just don’t want to destroy the thyroid as I’m worried about what my immune system would attack then( even though consultant seems to think that’s not the case)I’d like to get through the menopause first if I can to see what happens then.

[asiatic in reply to Sheryl5013]

Well I would agree with you. One of my reasons for not having a thyroidectomy was that I would still have antibodies and I would also need life long treatment for hypothyroidism which doctors say is easy to treat !! I think from all the postings on here many would disagree. I had to ask for a second opinion and my new endo is great. He thinks there is no problem keeping me on long term drug treatment. I am feeling really well now and that is what matters. Do you feel well ?

[Sheryl5013 in reply to asiatic]

Yes.It did take a little longer to feel better this time and had to increase carbimazole from 20mg to 25mg for the first few months .Have been on 5 mg now for about 5 months and apart from stiff joints I feel good.My last bt where all in normal range too.I have put on a little weight so endo as asked me to keep an eye out for hypo symptoms.Im happy to stay on meds but realise I can’t do that indefinitely.

[asiatic in reply to Sheryl5013]

Your endo sounds ok if he is telling you to look out for hypo symptoms. My last endo didn't monitor me correctly and I did go hypo which led to TED.

I wonder why you say you can't be on it indefinitely. There are many studies which say this is ok.

[Sheryl5013 in reply to asiatic]

My endo doesn’t recommend long term usage because of side effects.

Which studies have you read? I would be very interested in there findings.

Thanks

[asiatic in reply to Sheryl5013]

Oh dear ! My endo says there is no problem with side effects. I would have had a reaction by now. Who are we to believe ? I will try to find the papers I read about dosing . Might take a wee while but I will get back to you.

[Sheryl5013 in reply to asiatic]

Thank you so much for your help.. really appreciate it🙂

[asiatic in reply to Sheryl5013]

I asked a question about being on carbimazole long term and got this answer from Tedct

There is no evidence that the long-term effects of being on Carbimazole to control an overactive thyroid are any different from the side-effects seen occasionally in the short term.

Doctors on the whole are unhappy about patients continuing for many years on carbimazole/propylthiouracil not because new “late” side-effects develop but because patients remain at risk of the usual side-effects as long as they stay on the drug.

[asiatic in reply to asiatic]

The role of long term use of antithyroid drugs in Graves’ disease

Sustained control of Graves' hyperthyroidism during long-term low-dose antithyroid drug therapy of patients with severe Graves' orbitopathy.

Laurberg P, et al. Thyroid. 2011.

Positive Impact of Long-Term Antithyroid Drug

Treatment on the Outcome of Children with Graves’

Disease: National Long-Term Cohort Study

The above are just a few

[asiatic in reply to Sheryl5013]

Oops. Don't know what happened. Seem to have replied to myself ! Here are a few references

The role of long term use of antithyroid drugs in Graves’ disease

Sustained control of Graves' hyperthyroidism during long-term low-dose antithyroid drug therapy of patients with severe Graves' orbitopathy.

Laurberg P, et al. Thyroid. 2011.

Positive Impact of Long-Term Antithyroid Drug

Treatment on the Outcome of Children with Graves’

Disease: National Long-Term Cohort Study

[Sheryl5013 in reply to asiatic]

Thank you so much.I will take a look at those.

Keep well🙂

[Valarian]

I've been on it for fifteen months, and have been told they plan to get me off it by March ( so 21 months). Titration went well at first, but I had a relapse last December, and it's taken longer to bring my thyroid levels down, I'm currently still on 15mg/day.

[Sheryl5013 in reply to Valarian]

It’s quite frustrating how many consultants have different views on treatment length etc.Good luck and I hope it all goes well for you🙂

[Valarian in reply to Sheryl5013]

In the beginning, I was told 12-18 months, which seems to be the standard for Graves' in the UK. However, it seems they also want to continue monitoring for six months from levels coming within reference range (which in most cases, happens within 18 months), plus in my case, because of the relapse, they are still titrating my dose, and want to see whether my thyroid levels remain stable on 5mg day (always supposing I ever get there !).

I don't have a problem with endos mentioning 12-18 months as an initial guideline, and actual practice sometimes differing according to patient response.

[pingpong]

Been on Carbimazole for nearly 10 years. As high as 40 mg and currently on 10mg. Brief period of block and replace in between but I moved and they "don't do block and replace" down here. Now I know all my symptoms, I know when I am going hypo and I know when I am going hyper, so I adjust for myself. I find I need a higher dosage this time of year and lower in the summer.

[Sheryl5013 in reply to pingpong]

And your endo agrees with long term dosing?Its all so confusing 😉

[pingpong in reply to Sheryl5013]

My endo wanted me to have RAI, which I have said no from the start. Can't cure Graves. I have, however, come to understand my symptoms and when the body starts to ache in the joints, etc. I reduce my Carbimazole and when I start to get jittery and racy I increase my Carbimazole. After so long you become sensitive to what is going on. I have to say that at the moment I am at peace with myself and my medication but the thing to remember is that it is your body not the consultants. Don't do anything you are not happy with and don't do anything that cannot be reversed.

[JemBron]

I stay on low dose of 1.25mgs. I do follow advice of Elaine Moores. Might be worth you reading and/or posting on her forum.

[MiniMum97]

I was told I would be on it for a year but was only on it a few months and have been taken off it as I may be hypothyroid again (awaiting blood test next week). I have Graves and it is suspected that I also have hashis as well though.

[Valarian]

The lowest dose I have heard of anyone being titrated to is 2.5mg every other day. '1mg or less' would be difficult when the lowest dose pill available (a very small pill !) is 5mg.

[JemBron in reply to Valarian]

1.25mgs every day is same as 2.5mgs every other day!?! I cut up the pills - not always easy but can be done.

Depends how sensititve your body is to whatever it needs. I am weaning myself off the meds very slowly. Again, I follow the advice of Elaine Moores who I believe is very knowledgeable and helpful with hypERthyroid issues. As well as people on this forum. I ‘negotiate’ with my Endo to be on this low dose which he says ‘is diddly-squat’ rather than have surgery.

I am also on a very low dose propanol because I have had AF episodes.

Low long-term use of Carbimazole versus RAI/surgery and being hyPO is an on-going debate and one I will need to review if/when my condition changes.

[Valarian in reply to JemBron]

one of the posts said "1 mg or less" - although if i tried to cut a 5mg tablet into 4, I would probably have about 4mg of tablet plus a lot of crumbs

[duster]

I’m now coming up to 9 years on carbimazole. Had no problems what so ever. I was on block and replace firstly then stopped to see what happened last November but my graves symptoms came back this July and I am now trying the titration method. The doctors keep saying I have to have surgery at some point but I keep hanging on.

[purple64 in reply to duster]

They need to understand that you don't have to do anything unless it's right for you 🙄