Carbimazole Advice please

Hi Folks new here and trying to find out info on behalf of my 18 year old niece who has been prescribed this. Does it kill off thyroid and leave you having to take thyroxine for life. Many thanks for your advice.

[PurpleNails Administrator]

No it doesn’t damage the thyroid in any way. It works by inhibiting the production of new thyroid hormone.

Why has your niece been prescribed carbimazole? What is the cause of the hyperthyroidism? It’s not always continuous.

[TFH1 in reply to PurpleNails]

Thanks for the reply - her thyroid has been hovering around too high for a while, struggling to put on weight, circulation problems (maybe unrelated, possibly rheumatoid arthritis type condition) She was feeling okay on a herbal approach - lots of cruciferous vegetables etc and then became really unwell, whole neck and all glands incl thyroid swelled up. Doc then prescribed Carbimazole.

[PurpleNails Administrator in reply to TFH1]

Are you the same poster? Username different.

Do you have you neices results . See what has and hasn’t been tested.

Carbimazole is quite a strong medication. There can be serious side affects which can occur at any point while taking the medication. They are more common in 1st 3 months but he chances of them developing don’t lessen over time.

A good read of Patient information leaflet of the signs to look out for and a re-read every so often is a good practice.

Doctors don’t support long term use of carbimazole. They view hypo easier to treat. If the hyperthyroidism doesn’t resolve within around 18 months they plan permanent treatment.

Your nieces’ thyroid levels may naturally drop in which case carbimazole isn’t right treatment. If it found to be continuous careful monitoring and adjustments to medication will allow her level to be stable, eventually not needing any medication.

If doctors plan the next step it will either involve Radioactive iodine treatment by outpatient appointment either as as drink or single pill, which W ill ablate the thyroid. If RAI is not suitable ie they have active eye disease or close contact which children then surgery is offered.

Before she starts considering these option first step it to determine cause.

[TLVR in reply to TFH1]

When you refer to the doctor treating your niece is that an endocrinologist? Because GP's don't know enough. She needs to be under the care of an endocrinologist.

[SlowDragon Administrator]

For full Thyroid evaluation she needs TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Plus extremely important TSI or Trab antibodies are tested to definitely confirm Graves’ disease

Low vitamin levels are extremely common with Graves Disease (autoimmune hyperthyroidism) and Hashimoto’s (autoimmune hypothyroidism)

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms and can be misdiagnosed as Graves’ disease if TSI or Trab antibodies not tested

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 antibodies and vitamins

medichecks.com/products/adv...

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 down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Graves Disease antibodies test

medichecks.com/products/tsh...

Good info on Graves’ disease

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

healthunlocked.com/thyroidu...

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

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-...

[TFH1 in reply to SlowDragon]

Thank you Slow Dragon for that comprehensive response, much appreciated. From your experience, are there any negative effects on long term situation from taking Carbinmazole? I have been warned by someone that it kills off thyroid function and leaves you reliant on thyroxine for life. I've joined this group to get the facts from the folk who are experienced in this area

[helvella Administrator]

As PurpleNails said - it doesn't destroy the thyroid.

Carbimazole stops the manufacture of new thyroid hormone in the thyroid.

Any that already exists (e.g. in the bloodstream) can take some weeks to drop to good levels.

Also, carbimazole has a short half life. If you take it in a single dose each day, the level of carbimazole can drop drop so far that the thyroid can "escape" control and make more thyroid hormone before the next dose. In the early days of taking carbimazole it is often a good idea to take it in two, or even three, doses a day.

And. most important, read the Patient Information Leaflet. Every word. Not once. Not twice. At least three times. There are very important warnings to be read, understood and remembered.

[kittyelen]

Huh kill off the thyroid?Umm what have you been reading?

I am on this med and now down to just 5mg it just helps get things under control (An overactive thyroid is dangerous if left alone it can lead to things like heart palpitations and worse case thyroid storm!)

I was put on it Dec 2020 and quickly things became under control and now 5mg (started 20mg) I hope to just be on in total 12-18months and can come off. Has she been diagnosed with graves or something else?

You normally have blood tests every 6 weeks on this to monitor and the dosage adjusted accordingly.

Whoever told you it kills off the thyroid and leaves you on that other med for life, wellll they are not educated, I would not listen to someone like that who is scaremongering you. It is far safer to get the thyroid under control than leave it to go more overactive!!

[Sophitje]

Hello,No it stops the thyroid from producing the thyroxine, it does not destroy it. Radioactive iodine treatment does destroy the thyroid. It important that your niece's GP or consultant check her levels regularly, usually every 6 weeks, so her thyroid does not not become underactive. Depending on her condition and results the endocrinologist may choose to put her on block & replace regimen (this is the course i followed for Graves disease and it helped me achieve remission for several years), or they will slowly reduce the carbimazole dosage to see if her thyroid start working normally again. Has she been diagnosed yet?

[slidingonamoonbeam]

Hi Nice Aunty I was on carbimazole for 2 years for Graves.It made me sick in the stomach for awhile but discomfort lessened over time.My white cell count was below normal.now off the meds neutrophils have increased.Something to watch for.I don't think it kills off the thyroid but you can go into remission with graves.If your still hyperthyroid after 2 years they usually suggest radioactive iodine to kill off the thyroid here in Australia.

[debbiejayn]

No ..Your doc just have to find the right dose to balance your thyroxine..The only downside in my experience is that it's very easy to put on weight whilst on Carbimazole..prob not what a 18 yr old wants to hear!D.x

[EileenB]

To be honest I've no idea. I've been on thyroxine for over 30 years now so just know I have to continue taking it. But surely that's a question for your Dr.