Help please 40mg carbimazole : My consultant has... - Thyroid UK

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Help please 40mg carbimazole

lmoto profile image
11 Replies

My consultant has put me on 40mg carbimazole 2 weeks ago, last week my gp prescribed propanalol 3 times a day, it made me feel a little better, but now I feel dreadful

Work stress is through the roof, is this why I’m so ill? Or is it coincidence? Should I have time off? Not sure what to do to help myself,rest, exercise, eat nothing but fruit? Consultant will now push for radio active iodine which I’m extremely against my gut instinct says so.

Any suggestions for advice would be gratefully received

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lmoto
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11 Replies
Lalatoot profile image
Lalatoot

Hyperthyroid made me very ill. It takes a while for carbimazole to kick in. I too was on 40mcg. My body was so out of sorts it took months and months till I could start to function again. I was then on carbimazole on reducing doses till I was considered stable and on 5mcg per day. Over the next 2 years I twice came of carbimazole but went hyper both times. I was offered and took RAI.

I don't regret RAI. I never felt right on carbimazole and I don't think I would have found a balance on it. However following RAI I have struggled for 4 years to get my hypo levels balanced. It is only now that I feel I am on the right path.

Valarian profile image
Valarian

Hi Imoto.

Do you have your test results, and the associated ranges? (Typically in brackets after the result). You should have had tests for FT3, FT4, TSH and possibly antibody tests (either TRAb or TSI). If you have these, we will be able to provide more specific info. If you live in the UK, you are entitled to a copy of your test results.

Has your endo said what is causing you to be hyper, and what this diagnosis is based on ?

If your thyroid levels are high enough to warrant 40mg/day of carbimazole, it’s likely they are pretty high (perhaps twice the reference range or even more), and this will leave you feeling terrible. It can take 4-8 weeks for the carbimazole to have much noticeable effect, as it inhibits production of new thyroid hormone but doesn’t destroy anything currently stored in the body, so it takes time for this to be used up.

In the meantime, the propranolol may well help with some of the worst symptoms. Stress is likely to make things worse, and you may need some time off, or a temporary reduction in workload.

No idea where the fruit diet came from, at this stage, I would go for the normally recommended balanced diet....your metabolism will be working overtime, and if you don’t eat properly you are likely to feel very hungry. As for rest and exercise, you may feel like the Duracell bunny - short spurts of energy followed by complete fatigue. Try to rest when you need it, and be aware that others may find your bursts of intense energy exhausting ! This probably isn’t the time to try to increase your exercise levels (and you probably won’t feel up to it) but gentle walks in the fresh air, a swim or some yoga may help with the stress.

Whether you need definitive treatment such as RAI will depend on why they think you are hyper. If your antibody levels indicate Graves’ (a common cause), then in the UK you are normally (currently) given 12-18 months on Carbimazole to see if the Graves’ will go into remission before they really push for RAI. If your endo is trying to push you into this any sooner, I would ask why. Some people who fail to achieve remission remain on Carbimazole long-term, but whether this would be right for you is likely to depend on personal circumstances and other factors including whether your thyroid levels are reasonably stable. Your endo should have explained the potential side-effects of Carbimazole, and although the worst of these (essentially big reduction in white cell count leading to severe infection) is very rare and less likely on lower doses or after a few months of treatment, the risk never disappears completely. Even if you do need a ‘definitive’ solution which permanently reduces thyroid activity sooner rather than later, surgery may be an alternative option and you need to ensure you are making an informed choice.

Here are some links to more info you may find useful:

thyroiduk.org/tuk/about_the...

btf-thyroid.org/hyperthyroi...

btf-thyroid.org/treatment-o...

lmoto profile image
lmoto in reply toValarian

Thanks so much this has confirmed that I should have time off & I’ve had graves for about 12 years was on 5mg for a few years then got cancer, it’s been high since but manageable for about 6 years but I am so against rai as I couldn’t face being under active with all that comes with it

ling profile image
ling in reply tolmoto

Imoto, what cancer did you have?

Have you stopped taking the Propranolol?

Best wishes.

lmoto profile image
lmoto in reply toling

I had a radical hysterectomy because of cervical cancer, just started taking it 3 times a week

ling profile image
ling in reply tolmoto

If my questions are disturbing you, please ignore my post.

-----------------------------

Sorry, is that 3 times a day every day or 3 times a week?

If it's 3 times a day every day, are you still taking it?

How long ago was the cancer?

May I ask what age group you are in?

lmoto profile image
lmoto

I’ll see my doctor this week and ask for results

Hennerton profile image
Hennerton

If you were recently diagnosed, you probably need time off work and your GP should know this. It takes ages to sort out levels of carbimazole and beta blockers but you must keep having tests to ensure you are on the correct dose of both. Maybe three times a day for Beta Blockers is too much but nobody will know unless you keep on top of it yourself. Doctors will only do what is asked.

I did not ever manage a successful dose of carbimazole as my levels were like a seesaw. In less than a year had a thyroidectomy. I am not suggesting you do that as I always wish I had tried harder with the medication. One point I did not know at the time is that being overactive gobbles up vitamins and minerals. Do keep asking for checks on iron, ferritin, B12 folate and Vit D. You need them to be well in range.

You should be kind to yourself, rest as much as possible, walk in the fresh air and countryside if possible and eat fresh, home made food with protein, some good carbs, veggies and reasonable amounts of fruit. Eating nothing but fruit is not a good idea. You need everything in balance and a gentle way of life to calm everything down.

lmoto profile image
lmoto

Thanks it’s been over 12 years of my life being ruled by graves, just now & again I get a bit of me back I’m aiming for some more of me again

birkie profile image
birkie

Hi lmoto

I was put on carbimazol and propranolol for overactive thiyroid about 3 weeks in I felt awful but gp insisted I kept on taking them after about 4/5 weeks I started vomiting just after taking the carbimazol and brought the tablet back could not stomach it then gp put me on ptu same thing happened I vomited it back but gp stupidly said keep taking it eventho I was vomiting it back so wasn't working up shot was I went in to thiyroid storm.. Look out for feeling nauseous and actually being sick it could mean you have an adverse affect to anti thiyroid meds as I did.... Also I was put on them before my gp did tests for graves which is what I had...

Good luck.. ❤️

lmoto profile image
lmoto

Hope to get help from my gp today I also see a herbalist today too

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