Stopping Carbimazole

[nooneimportant]

So I had my Endo appointment yesterday (14.01.25) I've been a little miffed with them since they threatened me with discharge for asking about the need for appointments, so on my latest communication I kindly copied my husband (who works for the regulator) into the email and needless to say I got a rather swift and much more positive response ..... hmmmm. No bother we are where we are.

So I've been on Carbimazole for approx. 18 months now - I have not had a good time on this medication and anyone who reads my posts will know that - however, equally I don't wish to be Hyperthyroid (caused by Graves) either. So since August I've flipped and flopped about with my medication as stated in previous posts, however, my T4 has seemingly remained stable at 15.7 and my TSH is still securely sat at 0.94.

My endo is very happy that my results have now been consistent and stable for at least 6 months and suggested trialling coming off the medication. I explained that I had already reduced my dose from 5mg to 2.5mg (or there abouts) and although he wasn't best pleased he did say "well, as long as you feel well, not having symptoms I guess as long as it works for you. I wouldn't recommend splitting doses but if it's working I'm ok with it!"

You might wanna sit down for this bit, I suggested staying on for a little longer - yes I know that there isn't much I wouldn't do to get off this medication however, the thought of springing back where I came from fills me dread. He too seemed surprised that I didn't snap his arm off at the chance to be freeeeeeeeeeeeeeeeeeeeeeee. However, I had a terrible time and still do sometimes adjusting to dose changes etc so I just have a feeling I will rocket or something should I simply just stop it. I've been somewhat sensitive to this stuff. He has agreed to another 6 months on the medication - taking me to two years. Now my questions are:

1. Has anyone experienced side effects from stopping Carbimazole that hasn't then relapsed? And will the anxiety of stopping cause a relapse??

2. Some of the side effects I'm getting (have done for a long time now) are tingling in hands and feet, joint pain and fatigue - is this because I now shouldn't be on it?

3. He didn't mention anything about testing for antibodies and I forgot to ask - doh - should I ask for this before coming off?

I would like to note I did decline to be weighed and they didn't try and push this with me and were totally respectful - I find it triggering I simply don't want to know how much I now weigh.

The consultant also said I saw you in person 18 months ago and the rest has been telephone appointments - I must say, you are looking better within yourself now. Now I'm not so sure about that but I'll take it.

TSH range: 0.27 - 4.5

T4 range: 11-23

July 24: TSH 0.9 T4 13.1

August 24: TSH 0.94 T4 15

January 25: TSH 0.94 T4 15.7

[pennyannie]

Hey there again :

Your TSH is back in range which I take to mean that your Graves antibodies circulating in your blood are no longer an issue -

the antibodies are not stuck down nor weighing heavy on the TSH receptor sites -

so are not lowering the TSH and are not causing an over production in thyroid hormone production.

The pins and needle symptoms sound a bit like low B12 - whilst these other symptoms are likely hypothyroidism -

Your T4 is only around 21% through its range so your T3 is bound to be too low for you to function on.

Once fully off the AT drug 6-8 weeks - arrange a TSH +T3 +T4 blood test to see how well your thyroid function has recovered -

a euthyroid ( well thyroid on no medication ) would see a TSH at 1.20-1.50 with a T4 around mid point - say 50% - with the T3 tracking just behind at around 45% through its range.

Suggest you get your core strength vitamins and minerals run as we do need to maintain ferritin, folate, B12 and vitamin D at optimal levels which we can advise on:

The antibodies are generally only tested once - at the end of the day you are looking at an Auto Immune Disease - which can wax and wane throughout one's life -

For many it seems their thyroid has just one ' blip ' and resets itself - for others further episodes occur and they restart the AT drug treatment - for others further episodes bring conversations of having definitive treatment -

while others just keep some AT drug in the home medicine chest as insurance -

so it may come down to lifestyle choices and learning about what makes sense for you :

[nooneimportant in reply to pennyannie]

Thanks PA

Looking back at previous results my TSH hasn’t ever come above 1.1 - that was very much pre-Graves … assuming being at 0.94 might mean my antibodies are still a bit higher … ?

Not feeling confident at doing meds tbh 😭

[pennyannie in reply to nooneimportant]

What was your TSH at diagnosis ?

and the Graves antibody reading - did you also have positive TPO/TgAB ?

[nooneimportant]

TSH was 0.01

TRabs range 0-1.75 and was 2.3 went to 3.58 and down to 1.95 - they tested a few times because I moved consultants

tPOs 0-34this was 13

[nooneimportant in reply to nooneimportant]

I’ve not had it tested since feb last year

[pennyannie in reply to nooneimportant]

Thank you - is ' it ' - the TRab - well yes - they will tend wax and wane but it does seem to appear that this phase of ill health is now over for you - but you appear now to be hypothyroid - with possibly low vitamins and minerals which alone can compromise one's health and recovery further than necessary.

Recovery takes time and some people's TSH never recovers ( like mine - though I'm after RAI thyroid ablation ) ) and it's somewhat pointless chasing a TSH reading - though doctors seem to think the opposite and that the TSH the most important and only reading necessary -

You levels of Free T3 and Free T4 are a much more accurate picture of your thyroid status, function and health - and on which we can see a direct correlation between symptoms and too low a level of thyroid hormones causing hypothyroidism.

[tattybogle]

personally , i'd want TRab retesting to make sure they are back within normal range before trying to come off antithyroid drugs totally.

If you feel well enough on very low dose carbimazole i wouldn't be in any hurry to come off it. go at whatever speed you are comfortable with . There is good evidence that the longer you stay on antithyroid drugs the better the chance of remission .. and as far as i understand it so far , stopping / restarting it slightly increases the chances of suffering side effects on liver. So staying on it a bit too long at low dose is probably preferable to coming off too soon/ hyper again and having to go back on it again.

keep making your decisions based mainly on fT4 / fT3 levels and symptoms rather than TSH levels ,.. because TSH can remain a bit down regulated for a long time after a period of hyperthyroidism ie. you may find 0.9 is your new normal.