Long term use of carbizamole

[Bearhouse]

My teenager daughter has been on carbizamole for over 5 years and although stable on between 5 and 7.5mg can not seem to be able come off it completely. Any one had experience on being on this long term and how safe it is ?

[PurpleNails Administrator]

I’ve been on it 4 years.

Doctors usually imply there’s a limit to taking Carbimazole, but that’s not for a scientific reason.  

The risk remains the same whilst you take the medication, doesn’t increase.  

There is a very low risk of as a side affect the white cells drop.  This is a rare reaction rather than accumulated damage.  Many can stay on for years.  Stopping & starting seems to have more risk than continuing on low dose.  

Does she have Graves?  & was it confirmed with correct antibody testing?

What are her results? 

There is good evidence the best outcomes are in those who stay on carbimazole longer term.  There’s still a good change she will go into remission.  

I have a toxic nodule, the hyper levels are not expected to alter.  

Doctors may suggest she agree to surgery or radioactive iodine - RAI to reverse the hyper possibility & treat hypothyroid which they view as more straightforward to treat.  

Only agree once you’ve done your research & comfortable with the decision.  

[SlowDragon Administrator]

important to regularly retest vitamin D, folate, B12 and full iron panel including ferritin

TSH, Ft4 and FT3 all need testing

Test thyroid levels early morning around 9am for highest TSH

Do you have any recent Thyroid and vitamin results and ranges

Has she had coeliac blood test done

Is she on gluten free diet or dairy free diet

[asiatic]

I have Graves and been on it about 7 years. As PurpleNails says the risk doesn’t increase but stays the same and recent evidence confirms the longer we stay on it ( eg. 10 years) the greater chance of lasting remission. According to Elaine Moore, an American expert, we are in remission if secreting TSH normally on a low dose of Carbimazole eg. 1.25 mg. or even lower. Has your daughter had her antibodies for Graves measured (TSI or TRAb ) either at the start to confirm her diagnosis or recently to check for remission ?