Carbimazole and taste loss

[Cardlover]

Hi, I'm new here and was just wondering if anyone else has experienced taste loss whilst on Carbimazole. I was diagnosed with hyperthyroidism in December and was put on 40mg at first. At the end of January I suddenly lost all taste. After a blood test at 6 weeks my endocrinologist halved my dose but that made no difference. Another 6 weeks later I had another blood test and it was discovered my thyroid was now under active so was reduced to 5mg. Taste better than it was but still not normal - sweet things taste salty!

[asiatic]

Hi Cardlover, just had a look at the leaflet enclosed with my Carbimazole tablets and loss of taste is included under possible side effects.

[Cardlover in reply to asiatic]

Hi asiatic thank you for your reply.Yes I've noticed that too although the specialist said he thinks it's unlikely for some reason. I was just wondering if anyone else here has actually experienced it. I'm assuming it must be the meds as it's slightly better now I'm on a reduced dose.

[SlowDragon Administrator]

welcome to the forum

I was diagnosed with hyperthyroidism in December

Please add results and ranges

Another 6 weeks later I had another blood test and it was discovered my thyroid was now under active so was reduced to 5mg.

Please add most recent results

You should have had TSI or Trab antibodies tested to see if this is genuine autoimmune hyperthyroidism (Graves’ disease)

Early stage autoimmune HYPOthyroudism (hashimoto’s) frequently starts with transient hyperthyroid type results

This can be mistaken for Graves’ disease

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if you possibly have Hashimoto’s

These antibodies can also be mildly raised with Graves’ disease

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

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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 all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Graves Disease antibodies test

medichecks.com/products/tsh...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[pennyannie]

Hello Cardlover and welcome to the forum :

Have you been diagnosed with Graves Disease ?

Do you have positive and over range TRab - commonly written as a TSH Thyroid Receptor antibody reading and a single number alongside a cut off number ?

Are you able to track your readings from diagnosis and can see how your TSH, T3 and T4 have changed and now with the T3 and T4 back down in range with the symptoms hopefully alleviated that initially took you to your doctor.

The ranges are just a guide as to where the T3 and T4 need to sit -

and quite where, within these ranges, you need your T3 and T4 to sit - is unique to you -

rule of thumb - high over range T3 /T4 will likely be causing hyper type symptoms -

low BUT in the range T3/T4 will likely be causing the equally disabling symptoms of hypothyroidism.

The dose of Carbimazole is titrated, up or down to get your T3 and T4 sitting in the ranges with the symptoms that first took you to your doctor alleviated - has that happened ?

Graves is an Auto Immune disease - there is no cure - and something has triggered your immune system to turn and attack your body rather than defend it - and quite why this has happened now is a question that you are best placed to maybe have some thoughts about.

There is likely a genetic predisposition with Graves and somebody in your family maybe a generation away from you with a thyroid health issue and no two peoples journey with Graves will be the same- though common triggers appear to be - stress and anxiety.

The Carbimazole is an Anti Thyroid drug and all this does is ' buy you time ' - much like a plane waiting for a landing slot - while we wait for your immune system response to calm back down and hopefully your thyroid return to it's normal rhythm and function without the need for any medication.

The NHS generally allocate a treatment window with the AT drug of 15-18 months at which time if you are not able to come off the drugs without relapsing, a more definitive treatment is encouraged -

namely RAI thyroid ablation or a thyroidectomy - both of which will leave you primary hypothyroid and requiring medication for the rest of your life.

I had RAI thyroid ablation back in 2005 and deeply regret this treatment option and treating hypothyroidism in my opinion more difficult than taking the AT drug- but told Carbimazole was too dangerous to stay on long term and that I was due RAI the following year, at my very first hospital appointment and knowing nothing, and in a state of shock I was simply compliant and followed the advice offered.

How are your eyes - dry, gritty, light sensitive - please ensure eye drops are all Preservative Free even those prescribed.

We do now have some research which you may find interesting:

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

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

P.S. There is an alternative Anti Thyroid drug - though not sure of the side effects - Propylthiouracil = PTU - for short and ease of speech !!

I found the most well rounded of all I researched that of Elaine Moore's books and now website - elaine-moore.com