2.5mg carbimazole but tsh going up: Hello... - Thyroid UK

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2.5mg carbimazole but tsh going up

Jman86 profile image
10 Replies

Hello everyone.

I made a couple posts before and you guys were very helpful and I'm thankful for that. At the moment I'm taking 2.5mg Carbimazole once a day (She recommended 5mg every 2 days) only, after 7 months of finding out I had Graves diseases. My T3 and T4 are in range but my Tsh went to 5.9, so the Dr said to take 5mg every 3 days now and she wants to try and stop the carbimazole in another 4 months. I strongly believe that my diet change and bugleweed really helped me to recover so quick. So I would like to hear your opinions please, I'm thinking about taking 2.5mg only every 3 days, as well the bugleweed everyday, and then in November stop the carbimazole and keep only with bugleweed. I know it's recommended to stay on carbimazole for a long time on low doses but because my Tsh is going up and I'm already in a such low dose do you guys think I would be fine stopping it in November (One year on Carbimazole in November). What are your thoughts on the best way to go from now?

Thank you everyone

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Jman86
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pennyannie profile image
pennyannie

Hey there again :

Do you have the T3 and T4 reading alongside this TSH reading s as I'm not sure you can put much faith in just this one result.

As you know the most recent research is suggesting the longer the patient stays on the AT drug the better the patient's long term outcome.

I'm sure all the changes you have made are helping but I don't think we can make a decision based on just this TSH reading and a lot can happen between now and November,

You could reduce the AT drug further by quartering the 5 mcg tablet ?

How are you feeing, ?

Is your health/ life style compromised by staying on this small dose of the AT drug ?

Jman86 profile image
Jman86 in reply to pennyannie

I feel really good actually. I'm just worried that if I keep on the Carbimazole it will push my Tsh even higher with time. My T3 and T4 are in range, it has been in normal range for the past 4 months actually, it's just the tsh that keeps slowly going up

pennyannie profile image
pennyannie in reply to Jman86

In normal circumstances the TSH does goes up - this is what it is meant to do - it is not meant to be stuck down under the range -

This could be a sign that your immune system is calming down and your antibody reading less than when diagnosed - maybe ask for a reading to compare to when diagnosed.

What about taking a 1/4 of the AT medication daily ?

The most recent research is suggesting the longer the patient stays on the AT drug the better the long term outcome -

Apologies if I've set this before - can't remember - pubmed.ncbi.nlm.nih.gov/338...

Speaking of someone who had RAI thyroid ablation within around 15 months from diagnosis - i deeply regret this treatment - though not given any option back in 2004/5.

Jman86 profile image
Jman86

This were my pasts results. Next is my current ones. As you can see the tsh is really high now:

Past
pennyannie profile image
pennyannie in reply to Jman86

I'm sorry but these red highlighted area make it impossible to see / read clearly the results.

Jman86 profile image
Jman86

Current results

Current results
pennyannie profile image
pennyannie in reply to Jman86

OK - so yes, your results ' looked better ' in May -

so why not titrate down to 1/4 of the 5mcg daily - and see how you feel there ?

I've linked you into another post / question - and and explanation by Tatty - might be useful ?

Jman86 profile image
Jman86 in reply to pennyannie

Yes, I guess 1/4 would be better than 5mg every 3 days... Just curious to know what would be the lowest dose someone could ever take? And as I mentioned my Dr wants to stop my treatment in November which will be a year, after that if she decides to stop I won't be able to keep the medicine... What if I take 1/4 of carbimazole every other day, would that be too low?

pennyannie profile image
pennyannie in reply to Jman86

I don't know - and just think initially it will be easier to get into the routine of a little bit of the AT drug every day - wouldn't it ?

There are people on this forum diagnosed Graves - who now just take the AT drug at short periods in their lives, when they sense their Graves ' playing up ' :

Graves doesn't go away - it is an AI disease - and as you have learnt making life style changes and calming down ones immune system has had it's benefits.

elaine-moore.com - for all things Graves and AI - though think I've likely sent this to you before -

Did you find Elaine's forum, which is much much like this one - maybe of additional help to you ?

Jman86 profile image
Jman86

Thank you, yes I have been reading everything I can about Graves, but this is such a complicated illness it's not if you take a pill and goes away, you need to kep checking and adjusting, it's frustrating 😮‍💨... But well such is life .

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