Is carbimazole withdrawal a thing?

[tuxedocats]

Hello and merry Christmas!

Looking for any advice or experiences…

I saw a doctor (trainee endo) last week who agreed I could try coming off carbimazole - I’ve been on 5mg a day for just over a year.

Since my last dose 4 days ago I’ve started feeling anxious and sad, like my heart is pounding (pulse tracker on phone said bpm was normal), and generally wiped out (though I have a 2 year old, so that’s not too unusual..!). It feels like my hormones are all over the place.

Could this be a result of stopping the carbimazole, or is it too early to be seeing any effects? Should I ring the hospital or give it a bit longer to settle down?

I read that ‘rebound hyperthyroidism’ can occur soon after stopping treatment, but that this isn’t necessarily a sign of relapse.

For context - my thyroid function tests (T3 + T4) have all been normal since starting treatment. I have suspected Graves’ disease, due to a borderline TSH receptor antibody test result (“0.6” is all I was told!). For various reasons antibodies weren’t tested until I’d been on carb for around 7 months, so my endo suspects they may have been higher before starting treatment.

Thank you in advance.

[pennyannie]

Hello Tuxedocats and welcome to the forum :

Carbimazole is an Anti Thyroid drug and prescribed to semi-block ones own natural daily thyroid hormone production when your thyroid is over producing thyroid hormones.

Over production of thyroid hormones is generally caused by an Auto Immune Disease - ( probably either Graves and / or Hashimotos and diagnosed by positive antibody readings ) -

and all the AT drug does is ' buy you time ' while we wait for your immune system to calm down again - with hopefully your thyroid resetting itself without the need for any drugs.

So, yes, it is used as a drug to be withdrawn when the time is right to come off it -

We are looking at an immune system malfunction and it takes as long as it takes for your immune system to calm back down again -

The NHS generally allocate around 15-18 month window with the AT drug -

there should be blood tests every 6-8 weeks during this period and as your T3 and T4 fall back down into range the AT drug is reduced down so try and keep your thyroid levels around mid point in the ranges where you should feel neither hyper nor hypo - and as comfortable as possible - while we wait - for your immune system to stop ramping up and causing symptoms.

Much like a plane waiting for a landing slot - circulating above losing fuel and height waiting for the ideal conditions for a safe landing back on the ground.

Were you advised to come off the AT drug due to your most recent T3/4 blood tests - we can advise and read these blood tests for you if you care to share the results and ranges -

if unsure, and recognising symptoms appearing again - can you not just restart taking the Carbimazole ?

The most recent research is detailed below :-

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

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

The most rounded of all I researched for Graves Disease is that of Elaine Moore - books and website - elaine-moore.com

Thyroid UK is the charity who supports this patient to patient forum and where you can read around all things thyroid - thyroiduk.org

When metabolism is running too fast as in hyper or too slow in hypo the body struggles to extract key nutrients from food no matter how well and clean you eat - and non optimal levels of ferritin, folate, B12 and vitamin D will compound your ill health further than necessary - please get these run and share with forum members so we can advise where best these need to be to support your through to better health and well being.

[Liiila in reply to pennyannie]

As always, you’re providing some gems on this forum!

Thank you for sharing and happy holidays!

[tuxedocats in reply to pennyannie]

Thanks pennyannie! I’ll have a look at the links you’ve shared, much appreciated.

I’d originally been told that I might be able to come off the carbimazole after a year - so I asked about doing this at my appointment, and the doctor said he was happy for me to try it based off my latest T3/4 test and the antibodies test. But now I’m thinking it might have been too soon. I don’t have my most recent test results unfortunately, I was just told that they were “normal”.

I’ve run out of my last prescription but think I will get in touch with the hospital if symptoms continue - I have a blood test scheduled at the end of Jan too.

Thanks again for your response, I’ll be doing some reading up!

[pennyannie in reply to tuxedocats]

Ok then - maybe your doctor a faster route for a ' top up prescription ' this week ?

We are now able to access all our medical records held at our primary care provider and suggest you ask the doctor's receptionist for the necessary form to complete and then you will be able to see these blood test results and track your own progress.

' Normal ' will mean that your T3/T4 are in the range - but these ranges are too wide - and symptoms of hypothyroidism are within these ranges -

and as with any range - optimal health is not found at the bottom of a range :

I'm not aware your Graves antibody will be checked again -

Do you have a copy of your initial blood test results at diagnosis showing the TSH, T3 and T4 reading / range - and which antibody was found over range and positive in your blood -

looking like either a TPO - TgAB - TRab - TSI - or wording such as a TSH Thyroid Receptor ab - with a range and / or a single number cut of number ?

[Sheilax]

hi tuxedocats samething happened to me ! Same symptoms as you I was put back on 50 mg and I feel great . Consultant still wants me have ioden treatment

[tuxedocats in reply to Sheilax]

Thanks sheilax! Useful to hear you had the same symptoms, I’ll speak to my doctor if it doesn’t settle down. I’m glad you’re feeling good now, even though you had to go back on the treatment

[Liiila]

Hi tuxedocats ,

What I’ve come to learn is that everyone’s thyroid healing journey is very different. I haven’t had much luck over the past few years (7-9 months and then relapse) and imo it’s because I’ve been asked to stop without weaning my body off the medication slowly.

pennyannie I agree with your comment “it takes as long as it takes” and from experience, I would say to really listen to your body. If something in your body doesn’t feel right, it probably isn’t and it’s not you overthinking or overreacting. I wish I had listened better and actioned sooner.

I’m getting better at that nowadays.

Wishing you a restorative season and best of luck with your healing journey.

[tuxedocats in reply to Liiila]

Thanks so much for your reply Liiila, that’s useful to hear - I was keen to come off the carbimazole but guess it may be better in the long term not to rush it. I hope you’re doing ok now!

[Pandora777]

Try to keep as stress free as possible easier said than done with a 2 year old. Also avoid excess alcohol and coffee. Caffeine is a terrible trigger for me

[9020822]

Hi, this is my second time on Carbimazole. Highly recommend speaking with your Endo first. First time I was advised by my Endo, I could not stop immediately as I could get withdrawal symptoms. I did 2 months at 1 x 5mg alternate days, then had a blood test. Then I was recommended, 1 month 1 x 5mg every three days. then 1 month once a week . Blood tested back withing "normal" range, No symptoms at all. No medication was off for 4 years. Yearly blood tested picked up I unfortunately needed to go back on again in Dec 2023, current blood test show I am near back to within levels and I will be speaking with my endo to start the process of alternate days, in the new year, wishing you well