Stopping Carbimazole

[sumuka]

Hi All - I was diagnosed with hyperthyroidism in March 2022 and have been on Carbimazole since then 20/10/5mg.

Been on 5mg since October 2022 and my endocrinologist told me to stop the medication on 26th November 2024 and do a TSH blood test on 19th December 2024. My tsh went down from 2.15 to 1.43.

He told me to continue without for 3 months and then do a blood test. My T3 and T4 (both free) have been very good for 2 years (on 7th November 2024, they were 5.2 and 18.6).

Just wondering whether the 33% reduction in TSH is something to worry about and whether he is testing for remission.

Many thanks in advance for all replies.

[pennyannie]

Hello Sumuka and welcome to the forum :

The Carbimazole is an Anti Thyroid and all this does is semi-block your new, own, daily thyroid hormone production - so as you reduce the dose of the AT drug - one would expect your T3 and T4 levels to rise through the ranges has this happened and can you please share the T3/T4 ranges with forum members.

Are you with Graves Disease - there is nothing on your Profile - so all this is a guess:

If with Graves this is an Auto Immune Disease which presents with a low/ suppressed TSH due to Graves antibodies circulating in your blood - which push down the fine TSH hair follicles within your body - which in turn push up thyroid hormone production - and you then getting a diagnosis of hyperthyroidism.

I assume since your TSH has bounced back into the range - your immune system has now calmed down and this phase of Graves Disease now over and with the end goal being to come off the AT drug and your thyroid return to normal without the need for any drugs, which appears to be happening.

The AT drug - just ' buys you time ' while we wait for your immune system to calm back down again - and this all looks to be on course and you are doing ok.

A normal ( euthyroid ) thyroid and not on any medication would see a TSH at 1.20 -1.50 in the range and so I think following these instructions is working well for you.

Just for reference :-

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

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

If with Graves the most rounded of all I researched is that of Elaine Moore - books and website - elaine-moore.com

[sumuka in reply to pennyannie]

Hi Pennyannie - Many thanks for the reply. My diagnosis was indeed Graves disease. How do I attach my T3/T4 ranges here? Hopefully my screenshots come through.

Blood test results.

[sumuka in reply to sumuka]

2nd screenshot

Bloods

[pennyannie in reply to sumuka]

Thanks for the pictures but I can't see any ranges there ?

[TiggerMe Ambassador in reply to pennyannie]

Range is within the elongated “ɪ” which looks to be 3.1-6.8 and 12-22

[pennyannie in reply to TiggerMe]

Oh - thank you - I'll trust your eye's - or anyone's - rather than mine - any day !!

sumuka

So your T4 is tracking at around 69% with your T3 tucked in behind at around 57% -

I'm not sure how long it takes for the AT drug to fully leave your body or for your thyroid to return to fully functioning -

A euthyroid ( normal ) functioning thyroid would see a T4 at around 50% with a T3 tracking just behind at around 45% through its range.

So you maybe running with a slightly high T3/T4 but this may have been your ' normal ' level of metabolism - we don't know - ' and you have further monitoring planned so I wouldn't be too concerned if you feel well and back to what you know as your normal -

Do you have there your original TSH, T3 and T4 readings / ranges at diagnosis - and what antibodies were found positive and over range in your bloods - these would look like either / or - a TPO - TgAB - TSI - TRab - reading / range - or written as maybe a TSH Thyroid Receptor reading with a single figure and cut off number ?

-

[sumuka in reply to pennyannie]

Thanks.

You mentioned TRAB (Range 0 - 1.50) which was as follows:

Dec 2022 5.30 IU/L

Sep 2023 2.70

Dec 2023 2.0

Jan 2024 1.04

Apr 2024 2.0

Let me find all my other reports prior to March 2023 and tabulise them here.

TSH T3 FREE T4 FREE

RANGE 0.27 - 4.20 3.1 - 6.8 12 - 22

MARCH 2022 <0.01 7.60 31.20

MAY 2022 <0.01 4.50 15.70

JULY 2022 0.30 3.60 11.80

SEPT 2022 0.81 4.0 13.80

JAN 2023 1.80 NO TEST NO TEST

MARCH 2023 1.44 4.50 15.10

[pennyannie in reply to sumuka]

Thank you -

Interesting that at diagnosis your T3 was only 7.60 and your T4 at 31.20 - do you remember why you went to the doctor and the symptoms being tolerated ?

Generally with Graves we see either very high o/range T3 readings well up into double digits with a T4 up in the 70/90's - or with inverted T3/T4 readings - T3 higher than T4 and mostly in the range -

With Graves you can experience phases of either blocking or stimulating antibodies -ramping up T3/T4 thyroid hormone production or blocking T3/T4 thyroid hormone productions and these 2 antibodies can switch places - with either being dominant at any given time and in some instances the antibodies can ' burn each other out ' leaving you feeling pretty much normal - for you :

Very interesting - are these NHS blood tests - as I thought the NHS only ran the antibody blood test once at diagnosis - and then monitored throughout on just a TSH with occasional T3/T4 readings.

[sumuka in reply to pennyannie]

My weight kept slowly reducing from 162 lbs till it reached 143 lbs in January 2022. Fortunately, I was out for dinner with medical and dental friends from my university days and the clever medic saw my face and said "get your thyroid checked". And that's how I got diagnosed. All the tests have been done by the NHS. My endocrinologist is the head of the department in his hospital and so I guess he can order any test. I also display my medical knowledge when we meet and so he does all the necessary testing.

Next test is in 3 months time but I feel I should get one done before.

[pennyannie in reply to sumuka]

Thanks - so just unexplained weight loss -

Did you check for a fine tremor on the middle finger of your outstretched hand - and I think this another of the most telling physical symptoms.

So I take this to mean that you are a relatively young man and diagnosed when at medical school - just be aware -

Graves is an Auto Immune disease that only tends to get diagnosed when the immune system starts attacking the thyroid and / or eyes - there is no cure, and for some they do just have this one phase of Graves - and their thyroid resorts to normal function and it's considered a just a ' blip ' -

Graves is poorly understood and badly treated - with no 2 peoples journey with Graves the same but we do know stress and anxiety are common triggers and that there is likely a genetic predisposition with maybe a family member a generation away from you with a thyroid health issue.

Well - it reads as though you have some one on the ' inside ' and are more fortunate than most with a friend able to accommodate you wishes as and when.

[sumuka in reply to pennyannie]

The first sign was the unexplained weight loss.

The first endo who saw me checked for the tremor and it was definitely there. She also checked for the nodular goitre but that was fine.

I think you misunderstood the dinner part and made me younger than I am 😁. I am 67 years old and we have Newcastle University old boys and girls dinners and reunions (about 4 to 5 a year). The rest are all doctors and dentists and I am the only Chartered Accountant in that group.

Neither parent had thyroid problems. I firmly believe that the 3 COVID vaccines gave me the hyperthyroidism since I am pretty healthy in all respects except for the love of white wine and Jameson Irish Whiskey 😁.

Have a good weekend and thank you for all the detailed information.

[pennyannie in reply to sumuka]

Oh - well since you hadn't filled in your profile - I guessed your age - as how could I have possibly known otherwise -

The genetics would extend to your aunts and uncles - so now in the light of your age - I guess this a question mark ?

We aren't allowed to openly discuss your belief - but I don't doubt you and research is now slowly becoming available -

I'll leave this to Jim Hacker from Yes Minister - and simply ' can't possible say ' :

pmc.ncbi.nlm.nih.gov/articl...

[sumuka in reply to pennyannie]

I will complete my profile. And many thanks for that link. Read the first article and even more convinced about the side effects of vaccines.

[sumuka in reply to TiggerMe]

Thanks. Those ranges are correct.

[PurpleNails Administrator]

Welcome to forum

What was cause of hyperthyroidism? Graves? Was this confirmed by testing TSI or TRab antibodies?

Seems dr has tested quite quickly after stopping & now planned to leave a longer gap. Might have been better to test at 6 weekly until consistent result.

The TSH went down a little because the FT4 & FT3 were allowed to rise after stopping carbimazole. This is expected I may take a few more weeks to settle. Are your test taken recommended? Morning draw, fast overnight, no biotin 3/7 before test.

What are FT4 & FT3 ranges (ranges vary between labs so always needed)

How much have FT4 & FT3 increased by ?

[sumuka in reply to PurpleNails]

Hi PurpleNails - Many thanks for the reply. My diagnosis was indeed Graves disease. See screenshots below.

Blood test results.

[sumuka in reply to sumuka]

2nd screenshot.

Bloods

[sumuka]

Thank you I will read your story. I am feeling good so far so let's see how it progresses.

[sumuka]

Hi again Lora7again! - Can you please send me a link for the particular story that you would like me to read. Many thanks in advance.

[tattybogle in reply to sumuka]

click on lora's name / picture in her reply above ..... takes you to her profile page.

look for 'bio' ... then click on 'read more'

[sumuka in reply to tattybogle]

Many thanks tattybogle.