Chang of brand in carbimazole: I have been on the... - Thyroid UK

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Chang of brand in carbimazole

robertlee2 profile image
10 Replies

I have been on the same brand of Carbimazole for many years now but due to cost I have been given a new brand, this new brand gave me terrible reflux, to be honest the tablets were not staying down, so now I have been given another brand I have an intermittent sore throat and my voice keeps going, has anybody else experienced this please

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PurpleNails profile image
PurpleNailsAdministrator

I often have change in brand as I have 2 different doses, 10mg & 5mg alternate days. I’d prefer consistent pills, but it hasn’t been an issue.

The fillers in the brand is likely what is causing your reflux & being sick. You were right to find another.

I recently had a swollen thyroid area and sore tonsils but I put this down to being Ill after covid & not taking a new brand which I have just started. Might have to monitor that myself.

We do have to be careful when on any dose of carbimazole, (from any brand, and any length of time). Warning signs are if there is a possible infection (fever), mouth ulcers, feeling unusually tired, odd bruising - these are signs of carbimazole induced agranulocytosis & best to tell GP and arrange a Full Blood Count to check white blood count.

The other possibility is that the strength or absorption differs between the brands and this has caused yours levels to alter. It might be good idea to have thyroid function re - checked. TSH, FT4 & FT3. How often are your levels monitored?

What is the cause of your hyper? Have you been on Carbimazole continuously since being diagnosed?

Was thyroid antibodies previously tested TPO & TG antibodies for autoimmune under active (can begin with transient hyper). TRab or TSI antibodies to confirm hyper Graves.

Also important to test folate, ferritin, vitamin d & B12.

robertlee2 profile image
robertlee2 in reply to PurpleNails

Hi I was diagnosed with Graves in 2006 I have been on Carbimazole since then with breaks to see if it will behave itself but sadly it didn’t I have been on the the same brand all that time Amdipharm brand my doctors were able to get them until two years ago and told me they could not get that brand, also added they were very expensive, so over the last two years I have been phoning round different chemists in the area and if they have the brand I have been getting them, quite a lot of mileage but worth it, sadly now most chemists do not supply them anymore, in February this year I had to resort to changing the brand and my doctors gave me Accord they caused me terrible reflux, so they changed the brand to Morningside since I have been on them 11th March I have a very sore throat and my voice keeps going

PurpleNails profile image
PurpleNailsAdministrator in reply to robertlee2

If you usually mange on 5 mg but have been in 20mg for a week and 15mg since - for how long? about a month? I would think your levels are now too low.

TSH 0.01

T4 22.9

T3 7.6

Are these (free) FT4 & FT3? Do you have ranges? By most ranges they look elevated & slightly over ranges but not super high. Dr tend to panic when the TSH become low and view hypo as safer so give higher doses of carbimazole, but monitoring can be weeks / months apart, which means you risk becoming hypothyroid before you are rechecked.

See if test can be brought forward or look at private testing - which will have added benefit of testing antibodies and nutrients in a bundle. (By finger prick sample & post). NHS do not alway complete full evaluation.

When you test do you test same time of day? Morning before eating will given higher TSH than later after eating.

I’ve been on carbimazole 3 years. My specialist discharged me to GP for monitoring until I agree to undergo radioactive iodine treatment. Many hyper patients report they are recommended definitive treatment & some feel pressured to agree. Is your doctor supportive of you remaining on carbimazole?

robertlee2 profile image
robertlee2 in reply to PurpleNails

I was on 10mg then dropped to 5mg but I had all my horrid symptoms appeared so I was put back up to 10mg for a month but my symptoms never eased so a week on 20mg now on on 15mg since the 9th March, my Endo good at keeping check so I dont go under active, he is supportive of me staying on Carbimazole, I didnt think normal GP would be able to monitor Graves yes they are free FT4 and FT3

PurpleNails profile image
PurpleNailsAdministrator in reply to robertlee2

I have nodule without autoimmune so usually stable but I know of others with Graves discharged by same doctor & other hospitals specialist doing same from this forum & being sent back to GP for monitoring, there’s not a great deal more specialist do other than test & adjust dose.

I think it depends on the specialist. Mine said she didn’t want me “on her books” so you have a more helpful specialist than many.

humanbean profile image
humanbean

I don't know if this applies to carbimazole, but I know some pills that come in "gastro-resistant" and "non-gastro-resistant" versions. The non-gastro-resistant are usually the cheapest but I have no idea how significant the price difference is.

It is not really relevant though.

If you are suffering as a result of the brand or type change you need to know who authorised this. I don't think you can be forced to stick to the ones that disagree with you.

The doctor can prescribe by brand name if you ask, although the wording has to be done a certain way. helvella had a post about specifying brands of levothyroxine recently, and I'm sure it must apply to other drugs too.

healthunlocked.com/thyroidu...

You may have to find a different pharmacist.

helvella profile image
helvellaAdministratorThyroid UK in reply to humanbean

I did - you are right:

healthunlocked.com/thyroidu...

Also now in my Vade Mecum document:

helvella - Vade Mecum for Thyroid

The term vade mecum means:

1. A referential book such as a handbook or manual.

2. A useful object, constantly carried on one’s person.

Please don't get put off by the number of pages!

Not everything is in this one document - my major medicines document is still separate!

From Dropbox:

dropbox.com/s/vp5ct1cwc03bl...

From Google Drive:

drive.google.com/file/d/1ZW...

Documentation on all UK licensed makes of carbimazole available here:

products.mhra.gov.uk/search...

Or, in a more friendly form but likely not complete:

medicines.org.uk/emc/search...

SlowDragon profile image
SlowDragonAdministrator

What are your most recent thyroid and vitamin results

TSH, Ft4 and ft3 plus vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

robertlee2 profile image
robertlee2 in reply to SlowDragon

Hi I have been stable for on 10mg since Dec 2017 in August 2021 dropped down to 5mg, but my blood test in February this year the thyroid had a nasty blip my blood results T4 22.9 TSH 0.01 T3 7.6 so my Endo increased my dose to 20mg for a week and then 15mg I am due a blood test next week

SlowDragon profile image
SlowDragonAdministrator in reply to robertlee2

Acid reflux and sore throat suggests you may be over medicated and borderline hypothyroid

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