Carbimazole giving me grief.: Any one else had to... - Thyroid UK

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Carbimazole giving me grief.

Noniekin profile image
12 Replies

Any one else had to lower their.dose of Carbimazole because it makes them feel sick and weak? I have classic Graves disease and only six weeks into treatment and feeling worse each day. Getting tests today to see if I am amemic and B12 deficient. Had a pre-existing chronic gastritis and bit of inflamed lung that have flared up really badly. I gather this is all due to poor immune response due to the drugs and am lowering the does to 5mg myself ahead of Dr appointment. Not sure I can go through 18 months of this.

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Noniekin profile image
Noniekin
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SlowDragon profile image
SlowDragonAdministrator

As several others said in previous post

healthunlocked.com/thyroidu...

Absolutely essential to test thyroid antibodies

TSI or TRab antibodies for Graves

TPO and TG thyroid antibodies primarily for Hashimoto's (can also be high with Graves)

Your GP can test TPO and TG thyroid antibodies. TSI or TRab probably need an endocrinologist to test (even in Australia)

You also need Vitamin D, folate, ferritin and B12 tested

Low vitamin levels are extremely common

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Noniekin profile image
Noniekin in reply to SlowDragon

Thanks - really helpful.

Nathalie70 profile image
Nathalie70

Hello,

What do you mean by feeling sick? Carbimazole is going to block your thyroid so you should feel easily tired with a low level of energy. Nevertheless, I was always able to work during my treatment. The treatment doesn't have to last 18 months: have to TSH antibody receptors tested. They should decrease and when they become negative, the treatment can be stopped. I only had 8 months of treatment - and I have Graves and haven't relapsed since 2015.

Noniekin profile image
Noniekin in reply to Nathalie70

Doctor thinks I am anemic and low white blood cell count. The drugs suppress the immune system so I am probably coming down with something.

LAHs profile image
LAHs

I do not know a lot about carbimazole (can't even spell it!), however something that has mystified me is that it only has a half life of 5.5 hours. You may want to correlate your feeling of illness with the time you take your pill, maybe you need to spread your dose out to first thing in the morning then a second about noon or 2:00pm. My cat has hyperthyroidism and I find that she is very upset every morning but calms down in the afternoon after I give her her meds about midday. Just a thought.

Noniekin profile image
Noniekin in reply to LAHs

How interesting. I didn't take my morning pill yesterday and felt so much better all day. I will keep that in mind if I go downhill again.

Nathalie70 profile image
Nathalie70

I’m sorry but if your doctor thinks your immune system is suppressed, he would have stopped Carbimazole immediately as this is a serious emergency.

Being anemic is another matter: your doctor will give you iron tablets or injection but will continue the drug.

I have the feeling you don’t want to take it but remember that having your thyroid removed or destroyed is a very poor option compared to Carbimazole as it’s very difficult to balance your levels with Graves.

Your tiredness and sick feeling may be due too to the fact that you’re over-medicated and Carbimazole has put your thyroid in underactive mode.

Have a blood count and your TSH, FT3 and FT4 and come back to us.

Carbimazole half-life is not 5.5 hour but 36 by the way and it takes up to 2 weeks for it to leave your system once completely stopped.

Noniekin profile image
Noniekin in reply to Nathalie70

Thank you Nathalie - I am.waiting on blood tests. Something went wrong but I am picking up again. I have been eating food with iron and B12 and sleeping. It.may just have been depletion of those but it felt like I was taking a huge nose dive. Interesting that also might have been going hypo, not immune. I only see my specialist once every six weeks so GP is unsure.

Nathalie70 profile image
Nathalie70

Iron is likely. Underactive too. When are you having the blood test?

Noniekin profile image
Noniekin

Had it yesterday and feeling a lot better now - I felt like I was dying! Ears ringing so loudly and head thumping in addition to feeling incredibly weak.

SlowDragon profile image
SlowDragonAdministrator in reply to Noniekin

Are you absolutely sure you have high TSI or TRab antibodies?

We have seen patients with early stage Hashimoto's misdiagnosed as Graves

Just high FT4 and FT3 can be a Hashimoto's swing

Carbimazole and any sign of a sore throat needs taking very seriously

nhs.uk/conditions/overactiv...

Important to test vitamin D, folate, B12 and ferritin regularly

Noniekin profile image
Noniekin in reply to SlowDragon

Yes I have high antibodies and endocrynologist says it is classic Graves. My Dentist picked up swollen glands around my neck, my throat is sore and two nights ago I had one hour of sleep and felt like the life was being drained out of me - I have never in my life felt so bad. I feel better today but still have a sore throat. My GP told me I have an anxiety disorder and keep up the medication. I also had a blood test for full blood count, B12, iron and thyroid anti-bodies. Will the results of that test be enough to guide my GP. I can’t see my specialist for another five weeks. Thanks so much for responding.

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