Carbimazole side effects: Hi, I was diagnosed... - Thyroid UK

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Carbimazole side effects

London0505 profile image
15 Replies

Hi, I was diagnosed hyperthyroid ? Cause last November. I have taken carbimazole on two separate occasions. The first time it was stopped after developing violent diarrhoea and high temperature. 2nd attempt on a lower dosage caused yet another fever although no diarrhoea. My Endo today wants me to restart it yet again but I am obviously reluctant, he says the reaction is not the carbimazole !! I really am at a loss what to do now. He has also reduced my propranolol for the palpitations. I feel he doesn't want to help me at all. Any suggestions?

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London0505 profile image
London0505
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15 Replies
greygoose profile image
greygoose

Hi London0505, welcome to the forum.

Do you have any blood tests to share with us? I'm always suspicious when people say they have been 'diagnosed hyperthyroid', because most doctors only test TSH, and a low TSH is not necessarily due to hyperthyroidism. Given that the carbimazole didn't agree with you, I do wonder...

London0505 profile image
London0505 in reply to greygoose

Hi, TSH undetectable, T4 29. Very symptomatic to the point that I have been off sick 4 months.

greygoose profile image
greygoose in reply to London0505

Well, that sounds bad. Even so, I would have wanted my FT3 and antibodies tested... I would have thought they would have tested your FT3 with a TSH that low.

London0505 profile image
London0505 in reply to greygoose

It was was tested but I am so upset with today's appointment that I can't remember the T3 although it is raised.

greygoose profile image
greygoose in reply to London0505

OK :) sorry for the interrogation. And sorry you had such a bad appointment with the endo. :(

Clutter profile image
Clutter

London0505,

If you are unable to tolerate Carbimazole ask your GP to prescribe Propylthiouracil (PTU) which is a second choice anti-drug therapy as it can raise liver enzymes.

Hyperthyroidism is usually managed in endocrinology in the UK. Has your GP referred you?

London0505 profile image
London0505 in reply to Clutter

Hi, yes it's the Endocrinologist at Hospital who is prescribing Carbimazole. I mentioned alternative medication or even radio iodine therapy but he seems disbelieving of my reaction to Carbimazole. We have reached a stand off now.

Clutter profile image
Clutter in reply to London0505

London0505,

Don't rush to RAI to destroy your thyroid gland. If you can tolerate Carbimazole or PTU for 12-18 months your hyperthyroidism may go into remission.

If you don't tolerate Carbimazole this time tell him you want to try PTU and insist on seeing someone else if he won't consider it.

DoubleM profile image
DoubleM

Hi, I've hyperthyroid for nearly 9 years and had several side effects from carbimazole (took it for 18months) and was swapped to propylthirouracil and am still taking it.

If your reactions are on the list of side effects for carbimazole I'm bewildered as to why your endo won't let you change meds. Do you know what's causing your hyperthyroidism?

Silver_Fairy profile image
Silver_Fairy

Have you had your WBC tested?

London0505 profile image
London0505 in reply to Silver_Fairy

Blood results showed raised CRP but apart from thyroid bloods all else normal.

Glynisrose profile image
Glynisrose

You may be allergic or intolerant to the fillers or ( like me ) you may be allergic to maize if so there are other alternatives. Stick to your guns! Meds should NOT make you feel iller than you were already.

Ruane profile image
Ruane

I hope you manage to get the right medication. I feel for you.

(UK) I was only on Carbimazole for less than a week and it made me really ill. My GP had a blood test done and I am waiting on the results, I hope to get them today, (14th July). I was told that once I went on Carbimazole to have a blood test every 4 week. I am hoping I can go on a lower dose or try something else. I have a fear of having the Radio Iodine and then not tolerating thyroxine. Is thyroxine okay for everyone? I am getting so stressed about it.

GARDINERD8 profile image
GARDINERD8

I have just recently been started on this medication, I'm having severe allergic reactions, but endo and renal consultant want me to keep taking them ,I'm at my wits end ,tried all kinds of antihistamines to no avail steroids calm it for a while ,but at night ,it's really angry .fed up really fed up ,if I can't keep taking these tablets I have to consider two other treatments in the way of operations, bit drastic I know ,but I really need some answers and soon ,thanks in advance.

Valarian profile image
Valarian in reply to GARDINERD8

Hi GardenerD8

Sometimes people’s allergic reactions can either be controlled to an acceptable level with antihistamines, or subside within a couple of weeks, so it can be worth persisting with the Carbimazole. Were your antihistamines prescribed, or did you just buy over “the counter” ? If the latter, it might be worth talking to your pharmacist, because the “one a day” tablets you see everywhere are typically designed to deal with hay fever during the day, so they may not be consistently effective over a twenty four hour period.

In the U.K., if carbi isn’t tolerated, they usually try something called PTU before guiding people towards alternatives such as RAI or surgery, so ask your endo about this. If they won’t discuss PTU, or give you a good reason for not doing so, (these are pretty strong drugs, so there may be a particular reason in your case for ruling PTU out), you could say you’d like a second opinion before going for the other options. Although most of us wouldn’t choose RAI or surgery as a first option, there are people here who’ve successfully been through one or the other, and when you have a better idea of the direction your endo is advising, you can post a thread of your own asking for their thoughts and experience .

Quite a lot of us feel absolutely abysmal until our hyperthyroidism begins to be treated, we have all sorts of odd symptoms, and wonder whether we’ll ever feel well again. At least you now have a diagnosis, and once they find the right treatment, will hopefully begin to feel better quite quickly. I can’t imagine it will help you much at the moment, but bear in mind that your natural anxiety will probably be exacerbated by the hyperthyroidism itself; although your thyroid levels need to be reduced pretty quickly, you (almost certainly) have time to research and discuss the options, and make an informed decision.

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