Carbimazole super low dose

[nooneimportant]

can I ask if there is anyone out there on a super low dose of Carbimazole - I’m talking like 5mg per week?

Since stopping meds - in line with consultant original advice - my TSH (tested 12.03.25) has dropped still normal but low 0.38 (range 0.27-4.5) I don’t have T4 yet they seem to have lost that one 🙄 I think maybe some mild hyper symptoms, ie fullness in my throat, no tremors or weight loss that I can tell and no increase in appetite (was a massive thing for me previously) I’m thinking as I was on 2.5mg every day other day but that was still a bit much so dropped to 2.5mg missed two days then again and no change so I stopped taking it but obviously I probably need something just a tiny amount?

I don’t want to leave it until it’s gone back to square one … 😖

My consultant doesn’t know my family history as my GP is frankly shocking and unlikely shared info regarding the litter of dead bodies from breast cancer so RAI just isn’t an option although he’s going to try and push it as he’s mentioned it a few times, but yet to give me chance to explain why I can’t … I will refuse but it will be trying to get meds right 😕

Whilst on meds my T4 sat about 15-16 and TSH was about 0.9 T4 was still a bit low for me but just about manageable … thoughts?

[asiatic]

I have been on 2.5 mg Carb. and thought I could contribute so read your previous posts but WOW…..I know I’m getting on a bit but I am confused 🥹 Your doc. suggested recently you trial coming off and I agree. Although I normally think staying on a low dose long term a good option, you are now hypo and may wrongly be blaming Carbimazole for how you feel. Being hypo might be adding to your anxiety. You are changing dose without having FT4/FT3 results to guide you. You frequently refer to TSH which in a Graves patient is completely unreliable for dosing although the fact it has come into range might indicate your AB levels, which weren’t very high at diagnosis, have now dropped. The last FT4 you quote is quite low. You have been given good advice recently by pennyannie and Buddy195 that you might want to reread. My advice would be to stop Carbimazole for a couple of months before getting a full thyroid panel done and take it from there.

[nooneimportant in reply to asiatic]

Sorry I’ve been off Carbimazole now for a few months hence my TSH has dropped it was at 0.9 now at 0.38 and that’s in two months - I’m only quoting TSH simply because they’ve lost my t4 results I don’t usually give a monkeys about TSH tbf but I’ve no T4 result to work on …. Just concerned that blood test was 2 weeks ago and I could be going hyper again 😕

[asiatic in reply to nooneimportant]

As your TSH is in range it is unlikely you are Hyper. It may be that the slight decrease in TSH reflects a slight increase in thyroid hormones which would be good as you were showing symptoms of being hypo. This may be a positive sign so try not to worry but you really do need to have a full thyroid panel done to check. I use my resting pulse to check. It is normally low 60’s. If it drops into the 50’s I am hypo and if it starts creeping up 70, 80, 90 and over 100, I am hyper. Maybe this would work for you and give you reassurance you are not heading into hyper again. If you are you just go back on Carbimazole but at the moment things are looking ok but get that thyroid panel done and post for comments.

[nooneimportant in reply to asiatic]

Thank you - they seem to have lost my T4 result for some reason hopefully I’ll know more on Monday … my pulse didn’t show any changes and if I check it I’m checking it all the time - not allowed weighing scales in my house nor am I allowed a Fitbit anymore 😞 they actually make me more anxious so were taken away …

[asiatic in reply to nooneimportant]

If they have lost your results they owe you so use it to push for a full thyroid panel. Let us know what happens Monday

[pennyannie]

Hey there again :

I agree with how  asiatic has interpreted your progress

I've had to pop some heavy duty ointment into my eyes today and my vision is somewhat distorted and why I' m not active on the forum at the moment.

From memory its just been 2 months since you stopped the AT drug -

your TSH may still recover further, or may not, it's a very unreliable measure of anything once diagnosed with Graves - and it makes more sense to track on your T3 and T4 - and see how well your thyroid hormone production recovers.

[nooneimportant in reply to pennyannie]

Thanks pennyannie - do you think my TSH dropping that much in a short space of time is not concerning? I’ve just got a feeling I’m going hyper again since stopping meds I kinda expected that things would stay the same if I’d gone into remission which I don’t think I have now 😞

[pennyannie in reply to nooneimportant]

I don't think you should fixate on the TSH - it's range - just lets give your body time to reset itself :

[nooneimportant in reply to pennyannie]

Ok … 😖

[nooneimportant in reply to pennyannie]

also are you feeling better now? I hope your eyes are ok 😕

[pennyannie in reply to nooneimportant]

Hopefully by tomorrow I should be back to my normal !!

[Hugoo]

Hi

I’m on 5 mg a week. I was on 7.5 but took myself down to 5 as my T4 went slightly up. I take 2.5 mg twice a week. I have 2 toxic nodules and don’t want RAI. I was put back to GP care and am allowed a blood test every six months.

[nooneimportant in reply to Hugoo]

Thank you xx