Side effects of carbimazole: Husband diagnosed... - Thyroid UK

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Side effects of carbimazole

1digits0 profile image
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Husband diagnosed with hyperthyroidism in nov 2022. Carbimazole prescribed early December. He has suffered with insomnia and loss of appetite since and joint pain. He seems worse on it. Anybody else had similar.

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13 Replies
RedApple profile image
RedAppleAdministrator

1digits0, This may not be side effects, but an indication that the dose of carbimazole is wrong. If your husband hasn't had a thyroid blood test to check his levels since starting the medication, then that should be done asap.

1digits0 profile image
1digits0 in reply to RedApple

Yes, had a recent blood test just before christmas and waiting on result. He just feels so awful.

SlowDragon profile image
SlowDragonAdministrator

do you have copies of blood test results from BEFORE starting on Carbimazole

GP/endo should have tested

TSH, Ft4 and Ft3

TSI or Trab antibodies for autoimmune HYPERTHYROID disease - also called Graves’ disease

TPO and TG antibodies for autoimmune HYPOTHYROID disease also called Hashimoto’s

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms…..can be mistaken for Graves’ disease

It’s possible to have slightly raised TPO or TG antibodies with Graves’ disease too.

But with Hashimoto’s TPO or TG antibodies will tend to be well over range

with both Hashimoto’s and Graves’ disease very important to test vitamin D, folate, B12 and ferritin

These are often all very low with Hashimoto’s

With Graves disease ferritin often high….rest very low

1digits0 profile image
1digits0 in reply to SlowDragon

My husband is not one for asking many questions unlike myself. Have no idea what his readings were but has had repeat blood test over last 3 months a month apart each time. He had a partial thyroidectomy in jan 2020 just before lock down and not been monitored until 3 months ago.

SlowDragon profile image
SlowDragonAdministrator in reply to 1digits0

I think you better get copies of results asap

After a hemi thyroidectomy…..it would be more normal to be prescribed levothyroxine

Not saying it’s impossible for someone to be hyperthyroid after hemi thyroidectomy……but certainly more unusual

Suggest you (he ) rings or emails surgery tomorrow and requests copies of all his results since before hemi thyroidectomy

He is legally entitled to printed copies of blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring/ email receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks  

For full Thyroid evaluation he needs TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Hemi thyroidectomy and hyperthyroid

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

pennyannie profile image
pennyannie in reply to 1digits0

Oh, I've just replied below and now seen this extra piece of information :

Why did you husband have thyroid surgery ?

Normally this would mean , if anything, he would be prescribe thyroid hormone support - like T4 - Levothyroxine - and not an Anti Thyroid dug - I'm confused !!

1digits0 profile image
1digits0 in reply to pennyannie

He had a large growth removed which was attached to the thyroid and basically strangling him. Had no problems with thyroid before that. Just after surgery lockdown came and due to alot of issues and not through want of trying only just getting the after care.Recent blood test have revealed hyperactivity of the thyroid and Diabetes.

bantam12 profile image
bantam12 in reply to 1digits0

I had a partial op many years ago, was fine without meds but then went hyper again and need Carb again so maybe the same has happened to your husband.

1digits0 profile image
1digits0 in reply to bantam12

It sounds possible.

pennyannie profile image
pennyannie

Hello 1digits and welcome to the forum :

Carbimazole is an anti thyroid block and generally prescribed when there has been a diagnosis of Graves Disease :

However you can become hyperactive for other reasons and not prescribed an AT drug so it's very important to know exactly what is the medical evidence of diagnosis and which antibodies were found over range and positive from this first blood test.

Do you also have a print out showing his TSH, T3 and T4 readings from this first blood test ?

I went to the doctors suffering with insomnia, dry, gritty eyes and total exhaustion and told I hyperthyroid and had Graves Disease. I was prescribed Carbimazole which resolved the first two issues and since I'd lived with exhaustion and sore joints and achey muscle for what seemed like a life time, was age 56 at the time, thought my health issues were sorted.

Once on an Anti Thyroid drug, like Carbimazole there should be regular monitoring and dose adjustments as it is the immune system driving up the thyroid levels which can cause a multitude of symptoms.

It can be a bit of a roller coaster of both hyperthyroid and hypothyroid type symptoms if the dose of the AT drug isn't adjusted to reflect the constant changing pattern of Graves Disease.

There is no way of controlling the immune system once triggered, and the NHS prescribe an AT drug which simply blocks any new own thyroid hormone production and it's a bit like playing for time while we wait for your husband's immune system to calm down and hopefully revert back to normal.

There is an alternative to Carbimazole if this drug isn't tolerated well - Proplythiouracil - PTU for ease of speech and spelling !!

So, I am also a 1 digit forum member - so you are in good company - and whilst we wait for you to find some of the above answers, you might like to read around all things thyroid and suggest you pop across to Thyroid UK who are the charity who support this amazing forum - thyroiduk.org

1digits0 profile image
1digits0 in reply to pennyannie

Thank you I shall take a look. I wish in hindsight they had taken all of the thyroid away.Thank you for all your info.

pennyannie profile image
pennyannie in reply to 1digits0

I wouldn't wish a full thyroidectomy of anyone if there is an option : - details on my profile page - just tap on the icon alongside my name if interested :

I had RAI thyroid ablation for Graves back in 2005 and deeply regret this treatment option :

We do need more information before we can say much but If your husband does have Graves Disease the following research papers maybe of interest to you :

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

ncbi.nlm.nih.gov/pubmed/306...

1digits0 profile image
1digits0 in reply to pennyannie

Thank you! I will take a look. Husband had a recent ultrasound as GP found another lump and they found quite a few nodules. Awaiting appointment with Endo and cardiologist at the moment.

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