Carbizamole: Hi everyone.I was diagnosed with... - Thyroid UK

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Carbizamole

debbiejayn
debbiejayn

Hi everyone.I was diagnosed with hyperthyroid about 5 weeks ago and prescribed Carbizamole. Everything was going fine until 3weeks into my treatment when I suddenly developed constant lower abdominal pain and bloating.My GP thinks its IBS and completely unrelated. It's been constant and keeping me awake at night.Just wondered if anyone had similar problems on Carbizamole..

Thankyou.

11 Replies
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SlowDragon
SlowDragonAdministrator

Welcome to the forum

Gut issues are common hypothyroid symptom

Do you have blood test results from when you were diagnosed

Important that GP actually tested for Graves’ disease (Hyperthyroid) antibodies

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto’s (and Graves) .

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have Hashimoto’s or Graves’ disease

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Graves Disease antibodies test

medichecks.com/products/tsh...

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Can be slightly raised with Graves’ disease

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s.

Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms and can be misdiagnosed as Graves’ disease if all antibodies aren’t tested

Hi.Thankyou so much for all the info.

My GP is testing for antibodies and seems very much on the ball..I know my T4 was 28...I've seen an Endo privately. It was expensive and had it not have been for the wait due to Covid situation I probably wouldn't have done it.but he was very good( I hadn't got the abdominal pain then)and I'm seeing him again in 6wks.. It just seems very coincidental to me that someone over 50 can suddenly develop ibs when it seems much more likely to be something to do with thyroid or medication..

Many thanks D.

SlowDragon
SlowDragonAdministrator in reply to debbiejayn

Suggest you get hold of all tests that have been done

What was TSH

What was Ft3

Ft4 of 28 isn’t terribly high

You are legally entitled to printed copies of your 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 your 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 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

SlowDragon
SlowDragonAdministrator

How much Carbimazole

Suggest you get bloods tested BEFORE seeing endocrinologist

On Carbimazole bloods should be retested pretty regularly anyway

Hi...I've got a letter from Endo and it just says Free T4 of 28 and suppressed TSH. I'm on 20mgs daily of Carbizamole... Would 3wks be too soon to tip me into hypo?

SlowDragon
SlowDragonAdministrator in reply to debbiejayn

Don’t know ....hopefully others who have Graves’ disease may pop along and comment

Elaine Moore’s website may be helpful too - specialises in Graves’ disease

elaine-moore.com

helvella
helvellaAdministrator in reply to debbiejayn

Carbimazole works very quickly in terms of suppressing the creation of more thyroid hormone.

Three weeks is feasible.

But your Free T4 of 28 is not that incredibly high. We see far higher numbers quite often.

Suppressed TSH means little to nothing. Once it is suppressed, it can’t tell you anything at all about how hyperthyroid you are!

Have to say, I am questioning the diagnosis. Have you had a Thyroid Stimulating Immunoglobulin (TSI) test? Or TSH receptor antibody (TRab) test?

Could quite easily be something else from what I can see. The most obvious being Hashimoto’s – which is well known to have flares. During a flare, thyroid hormone levels can rise and produce the symptoms of hyperthyroidism.

debbiejayn
debbiejayn in reply to helvella

Thankyou...not sure what tests I've had tbh...I was surprised at diagnosis tbh..I called doc for symptoms of nausea and lack of appetite and was surprised with diagnosis when I saw what the symptoms are supposed to be...I've got more blood tests in 3wks and have to book to see End again after that..He is v experienced and well known in his field in Bham..he did mention that if I had any issues to ring hospital .try and get hold of his secretary and he would get back to me..May try..I do think it's more likely 2 b a thyroid/meds issue than suddenly developing chronic digestive issues (aged over 50) for no apparent reason.Many thanks..D.

helvella
helvellaAdministrator in reply to debbiejayn

I don't want it to sound as if I am blaming you in any way, but I think you are going to have to make sure you get actual results. Both of tests you have had and any further ones.

You absolutely need the test result, the reference interval (sometimes called reference range or normal range), and the units (e.g. pmol/L). These vary from lab to lab, and even over time from one lab. Don't let them palm you off with just the test result numbers.

SlowDragon
SlowDragonAdministrator in reply to debbiejayn

You are legally entitled to printed copies of your 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 your 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 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

We see some early stage Hashimoto’s patients misdiagnosed as Graves’ disease if medics haven’t tested correct antibodies .....especially if you are not over weight

Hashimoto’s can start with weight loss

Ok.Thanks for that..I am a bit overweight but not massively.. I've always struggled to lose it despite working out..I'd lost about half a stone when diagnosed.

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