low TSH Graves’ disease

[Yoga54]

I was wondering why my endocrinologist has lowered my carbimazole from 40mg to 20mg a day after my latest blood test results. I have grave’s disease and been on block and replace for 15 months, I just wondered what difference it would make to be on a lower dose, thanks for sharing your thoughts.

[Fruitandnutcase]

I’m not sure. Are you still on block and replace and how much levothyroxine are you taking now?

When I had Graves my doctor started me on 20 mcg which I took for four weeks and then had more blood tests.

Nothing much had really changed and I then got a letter from my consultant. She said to get more tablets from my doctor and take 40 mcg which I did. I took it daily for another two months until my appointment came round. By that time I was quite hypo!

When I saw the consultant I was told about the various ways of treating Graves and that they treated ‘the fast way’ which would take a year. I didn’t think a year was particularly fast but what did I know.

He said to start taking the Levo and to stop taking the carb for ‘a few days’. He was a bit vague about what constituted a few days so I decided to stop for five days then I started taking the 40 mcg again along with the Levo..

My starting dose of levo was 50mcg. I was treated for exactly a year -The levo was gradually increased until I was taking 125 mcg levo plus the 40 mcg of carbimazole.

Then one day after the year was up the consultant said to stop everything which I did. That was in 2013 and so far I’m still in remission.

So I can’t answer your question but that’s what happened to me if it’s any help.

[Yoga54 in reply to Fruitandnutcase]

Thank you for replying to me, I’m taking 100mcg levothyroxine and have been taking that from the beginning of block and replace. I have another appointment in 4 months time and have been told as soon as my TSH is in normal range they will stop all medication and see what happens, there is a 1 in 2 chance I will go in remission. I’m pleased you are doing well in remission, I haven’t had any side effects from the medication so I’m lucky and feel fine most days but I’m definitely nervous about stopping altogether although the consultant did say I would still have to have regular blood tests at the hospital and they would keep a close eye on me, this thyroid business is a bit of a journey.

[Fruitandnutcase in reply to Yoga54]

Perhaps lowering the carb is something new. When I was being treated I was only being given block and replace for a year - after that they kept saying if I didn’t go into remission I would have radioactive iodine and I kept saying I wasn’t having it. Like you I felt well on block and replace and should I have relapsed that was how I would like to have stayed. I saw my GP to ask if I could be forced to have RAI or could they refuse to treat me and she answered no to both questions, I stopped worrying about it (stress like that is not good for Graves) and fortunately so far 🤞I’ve stayed in remission.

So perhaps lowering the carb goes with treating with block and replace for a longer period of time. Next time you see your consultant ask him why he is doing that.

A couple of years after my Graves I developed inflammatory arthritis and I decided to go totally gluten free. I did not get tested beforehand though which I probably should have done. Anyway, I continued to do my own finger prick thyroid blood tests and watched my thyroid antibodies steadily reduce so I’ve been totally GF ever since. It could have been that my antibodies would have reduced anyway but I’m not prepared to go back to eating gluten.

Something to watch and which no one ever warned me about is osteoporosis. Being hyper (among other things) can lead to weak bones so try to eat a diet that contains lots of calcium and vitamin D and get lots of weight bearing exercise. The Royal Osteoporosis Society has a lot of good leaflets about exercise, dietary sources of calcium and vitamin D as well as the various markers for osteoporosis theros.org.uk

I know I keep banging on about it but I feel very annoyed that none of the doctors treating me even mentioned until I found out too late.

[jimh111]

Maybe they are thinking that you are in remission as your TRAb have been low for some time, so perhaps the carbimazole isn't doing anything, that your fT4 of 21.7 is due to the levothyroxine you are taking. I'm guessing your best action is to send them a brief polite question asking them to explain it so you can understand.

[Yoga54 in reply to jimh111]

Thanks, I will ring them tomorrow morning, I have just returned home from a trip to Cyprus and opened the letter late last night.

[pennyannie]

Hey there again :

Being on a lower dose of Carbimazole will allow more of your own natural thyroid hormone production to circulate within your body's system -

Carbimazole is an Anti Thyroid drug and blocking your own natural thyroid hormone production -

Levothyroxine is a synthetic T4 thyroid hormone which has been prescribed in a measured dose so your T4 does not fall too far through the ranges while taking the Anti Thyroid drug.

This a treatment option for Graves Disease called Block and Replace,

Graves is an auto immune disease for which there is no cure and other than definitive treatment the NHS prescribe the AT drug and put you into a ' holding position ' rather like a aeroplane, held in the sky, waiting for a landing slot -

while we wait for your immune system response to calm down.

Is there mention of adjusting down your dose of Levothyroxine at this point in time as well ?

[Yoga54 in reply to pennyannie]

Morning, thanks for the reply, no they haven’t changed the levothyroxine but I now understand about the carbimazole being reduced so thank you for that. I hope I don’t get any symptoms of hyperthyroidism back from lowering the dose so fingers crossed. I’m not sure if I should lower the dose immediately or wait until my next prescription in 2 weeks time so I’ll ring them this morning, what do you think ?

[pennyannie in reply to Yoga54]

Well your immune system has calmed down sufficiently for your TR ab result to now be ' in range ' and at an acceptable level within your blood stream so the next step is to start to ' ease off ' the blocking of your own natural thyroid hormone production.

Does the letter say reduce immediately ?

Do you have spare AT drugs - could you start today - knowing you can resume the full dose if you feel the need between now and your next appointment ?

If in doubt make the call - remember the TSH will take a long time to fully recover - if it ever does - and the most important readings and ranges are the Free T3 and Free T4 -

Just be aware your T4 is already at the top of the range -

so reducing the AT drug may see this reading going over range and why I suggested maybe the T4 dose you are taking needs to be adjusted down to compensate.

[asiatic]

The latest evidence shows the longer you stay on anti thyroid meds ( even a low dose ) the greater chance of a lasting remission. I have been on B&R about 7 years using the lowest effective dose and fine tuning to keep fT3 at least half way in range where I feel well. Currently 5mg.C /100mcg.Levo. The stop it and see approach is not one I would wish to follow. With thyroid , I have found slow and steady the best strategy.

[pennyannie in reply to asiatic]

Yes the O/P has the research paper from when I first made contact with her but thanks for the reminder as not everyone ' looks back ' :

pubmed.ncbi.nlm.nih.gov/338...

[asiatic in reply to pennyannie]

Oh dear ! Yes a timely reminder to look back. Have now checked and found I have replied to Yoga54 previously. Memory not so sharp these days.

[pennyannie in reply to asiatic]

Ditto :

[pennyannie]

Just a thought - do you know how to see your previous replies and questions ?

To read anybody's replies and posts simply press the icon alongside their name in any reply and go to their profile page :

For our own history of everything you have ever written on the forum simply press the icon top right on this page saying " More " and go to your profile page :

alternatively I think you too can just press your icon alongside your name: