withdrawal from carbminazole

[Cat333C]

hi everyone. Just wondering if anyone else has experienced this and what advice you have. I was diagnosed with graves after a bad bout of Covid with super high levels and was very unwell. Put on high dose of carbminazole and now down to 5mg- 4 times a week and have normal bloods for quite a while now and no more antibodies. The consultant told me to come off carbminazole it’s been about 12 days and my heart rate is accelerated at night again and itching and fear of this illness coming back is real! I know the consultant is pushing for thyroid removal or RAI. My question is did anyone else experience detox symptoms or did they have to go back on the carbminazole and if you did, were you able to slowly wean off them? Thanks so much!!

[pennyannie]

Hello Cat and welcome to the forum :

If you feel better taking a small dose of the Anti Thyroid drug stay in the Carbimazole until your body calms down and your immune system response also calms down, and rests itself.

The AT drug works by temporarily blocking your own thyroid hormone production and simply buys you time for your immune system to calm down and there are forum members who have been on Carbimazole for years and years.

Generally the NHS allocate a treatment window of around 15-18 months on this medication though the most current research is suggesting the longer the patient stays on the AT drug the better the outcome for the patient.

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

Please do not consider loosing your thyroid to RAI at this early juncture :

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

What are you most recent blood test results - your TSH. T3 and T4 readings and ranges ?

Which antibodies are now said to be negative ?

Were you also prescribed a beta blocker for the heart palpitations ?

When either hyperthyroid or hypothyroid it is essential to maintain core strength vitamins and minerals and suggest you also get run a ferritin, folate, B12 and vitamin D blood test and forum members can talk you through anything you don't understand including blood test results.

[Cat333C in reply to pennyannie]

Thank you for being so kind and sharing all of this. I’m waiting on my latest results but I’ve been monitoring closely and they’re down to a very normal range now. They started ridiculously high apparently so they’re all surprised the antibodies were negative so quickly but I think Covid brought it on! Can’t get hold of my consultant atm despite emailing how bad I felt and I am still as waiting for thyroid scan results. Antibodies are the TRAB test one - 9 months ago I was negative now I’m just waiting. I took carbminazole and propranolol again today and so hopefully they’ll call and I can get some clarity from the consultant if feeling that bad is to be expected and hopefully get off these pills! Thank you again ☺️

[pennyannie in reply to Cat333C]

TRAB antibodies are generally seen with Graves Disease - this is an auto immune disease and as mentioned previously the NHS generally allow a treatment window of around 15-18 months with the AT drug.

Graves can wax and wane throughout one's life - there is no cure and you might like to read around this poorly understood and badly treated AI disease on the Elaine Moore Graves Disease Foundation website elaine-moore.com - and if nothing else dip into the section of life style and more holistic, complimentary treatment options and what you can do for yourself to understand your stress and life/work balance.

The itching you refer to could be related to the Carbimazole - please read the Patient Information leaflet and there is an alternative AT drug - Propylthiouracil referred to as PTU .

The weight gain suggests that your T3 and T4 are now too low in the ranges and your metabolism slowed down too much by the AT drug - but we need to see the actual T3 and T4 results to advise you further.

When metabolism is running exactly right for the individual the body struggles to extract key nutrients through food so it's also essential to get your vitamins and minerals run as these need to be maintained at optimal levels to support you through this phase of this disease.

If you go into Thyroid UK - thyroiduk.org - there you can read about all things 'thyroid ' and there is a list of symptoms of both hyper and hypo symptoms and it might just help you understand where you are in this seesawing of symptoms.

[PurpleNails Administrator]

How long were you taking before stopping? 

Was the low dose making you go under range? 

Doctors used to aim for 18 months but there’s lots of research showing a very low dose for longer helps prevent reoccurrences. 

We also hear that there are cases where doctors are rushing the process & not adjusting appropriately to keep levels at right range but sticking to set reduction  and “limiting” carbimazole. You were monitored quite frequently so you history will show how you were managed.

You can resume carbimazole if necessary & remain on long term if you feel it’s a better option.  

The risks are the same throughout treatment they are quite low but Doctors tend to emphasise the dangers of carbimazole and recommend RAI.

Doctors say hypo is easier to treat and it’s more efficient for GPs to mange hypo than specialist monitoring. 

You also have option of surgery. 

What has been tested?

Can you share results & ranges? 

 Do you have online access or ask for printed copies.

For full test you need

TSH

FT4 

FT3

What antibodies were tested?   How was Graves confirmed?

 Also important to test 

Folate

Ferritin

B12

Vitamin D

Please put country in profile. Are you in UK?

[Cat333C in reply to PurpleNails]

Thank you for being so thoughtful with all the above and taking the time to ask. I’m in the UK.

FT4 was in the 80s, FT3 in 30s and TSH not detectable. TSH receptor antibody Was positive and indeterminate nodules. I also had long Covid at the time as had Covid the first time round super badly. 14 months later and 40mg starting dose I’m now on 5mg and Dr said I could just stop as levels in normal range. I’m waiting on latest ones, nodule scan update and antibodies but stopped the carbminazole and 10 days later felt horrific - hot flushes, itching, heart palpitations/ high heart rate and hunger so wondering if anyone else has experienced this and if there is a way to get off these things?

[kittyelen]

I went down to 5mg and then stopped as I don't think they do smaller than that, I did ask the question. I was on it 12M then came off as levels went stable, I didn't have any side effects though, you should contact your GP if you feel that bad!

Did they say if the covid was a trigger? That does sound harsh that they are pushing for removal or RAI were your levels really super high?

It could also be anxiety from what you describe though, I had something a little similar when coming off lithium gradually - it was like very mild panic attacks at night, heart going faster. More so linked as I was coming off at the height of covid!! It passed though, do you try really deep breaths and does it pass?

[Cat333C in reply to kittyelen]

Thank you so much for taking the time Kitty to reply - my GP is nearly impossible to get hold of. My results were FT4- in 80s, FT3 in 30s and TSH non existent 14 months ago. Now they’re in the normal range. They did think Covid had a lot to do with it we originally thought autoimmune as results were high and antibodies positive etc but have since changed their tune. I did all the breathing / tapping etc but didn’t budge it and pulse very high…all into that stuff so maybe I just need to go more slowly . Keen to get off it as although being all into eating well / healthy lifestyle etc I put on so much weight on them and am hoping to conceive in the near future. Maybe that’s why if I relapse they’re keen for removal 🤷‍♀️ Thank you again ☺️

[kittyelen in reply to Cat333C]

Ah you are similar to me, I told them I may want a baby so they said they would not recommend RAI as you can't try for a baby straight after I think you have to wait at least a year, maybe also due to my age as I am 37 next year! That explains why they would look at removal rather than RAI

My FT4 was not as high as that if this is your first episode then it does seem odd they are pushing for removal so soon you have to at least be monitored and see if you do relapse... if you are having symptoms they will probs want to do a blood sooner than the 8 week mark, I've been med free since start of the year but I am still really only just borderline but ever so slowly going in the right direction. If it does go the wrong way I would be put on meds rather than RAI and I have felt drained this week so really hoping it's ok my blood test in a few wks

[Cat333C]

It’s a lot isn’t it!? Happy to hear you’ve been med free and so hope the results are good! I totally know how you feel! I’m 38… been near impossible getting hold of my consultant to give me a weaning off the meds protocol ( as they told me just to stop but don’t think that was wise as felt so bad) 🤷‍♀️ How did you wean off them? Thank you again!