Carbimazole

[Bhattinsami]

Hi I was diagnosed with a over active thyroid, few months ago, I've had blood test my T4 is 16.2 and T3 5.4 and my TSH is suppressed 0.02.. I've been put on to carbimazole today, slightly worried and scared because of the side effects, I'm on 5mg once daily .. whats the best time to take ut after meal or before?? i am attaching thw screenshot of my blood test with this ,any help and advise very welcome, thank you

[SlowDragon Administrator]

You need the ranges on Ft4 and Ft3 (figures in brackets after each result)

Also request that thyroid antibodies are tested

You need TPO and TG thyroid antibodies tested for autoimmune thyroid disease (hashimoto’s)

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid.

As you were previously on levothyroxine, suggests Hashimoto’s is likely

TSI or Trab antibodies tested for Graves’ disease. Autoimmune hyperthyroid.

Carbimazole is not correct treatment for Hashimoto’s

Essential to test vitamin D, folate, ferritin and B12 too

[PurpleNails Administrator]

Are your FT4 & FT3 are in range? As they don’t look over range or are they?

Appears as if Doctor is going by TSH. to get that in range your FT4 & FT3 will likely need to be lowered to very low levels to “make” the TSH respond. Sometimes it doesn’t.

You previously had diagnosis of autoimmune thyroiditis (Hashimoto’s) & was taking low dose levo. How long ago did you stop taking?

Autoimmune thyroiditis causes transient hyper & the TSH may catch up yet.

Do you have positive TSI or TRab Antibodies which would indicate Graves? Have you had ultrasound of thyroid or uptake scan showing a hot nodule?

I’m not sure I’d agree to start carbimazole until It was proven the FT4 & FT3 was continuously over range & the cause. It is an extremely low dose so if you do decide it’s fine to take with or without food. Most importantly take same time every day. Read the PIL patient information leaflet very carefully so you know what the signs or reactions & side affects to be vigilant for.

I’m assuming the TBIII is Thyrotropin binding inhibiting immunoglobulins. That marker is not unique to Graves or hyper either and can be present with autoimmune thyroiditis & is really a marker for thyroid issues. It’s not a commonly used test, are you in UK?

[Bhattinsami in reply to PurpleNails]

Hi thanks for your email ..I stopped taking Levothyroxine since June 2021 as advised by my GP .. as back then myT3 was 7.5 and T4 22.7 .and thyroid peroxide antibodies was 227 then in September blood results were T4 22.1 and TSH 0.02 .. I repeated blood test in December the blood results came back with the following reading

T3 =5.4 , T4= 16.9, TSH=0.02

Then I was being referred to endocrinologist as my TSH was continuously suppressed although my t3 and t4 came in normal range .. the endo consulted with me via phone and did blood test in january the blood test results were

TSH 0.04, Ft3= 5.1. , FT4= 15.9

TBII( TSH RECEPTOR ANTIBODIES ) positive

Endo did not have me any medicine but said to repeat the blood test after 6 weeks which I did by the end of feb

The latest reading I have shown in my or digital post .. so basically the endo saying that as my tsh continues to be suppressed so he has advised me to take carbimazole..

I don’t know what to do although I’m generally much better but I’m experiencing hair fall, heavy menstrual bleeding and in the afternoon my face becomes hot ..

I don’t know if I got graves or thyroiditis or hashimotos..

Help is appreciated

[PurpleNails Administrator in reply to Bhattinsami]

You took 25 mcg Levo from 2016 - 2021? Was that continuously or varying amounts? What were your results like during those 5 years? Do you know at what level you feel best? Sometimes taking replacement lowers TSH to have FT4 & FT3 in range. That have leave the TSH down regulated.

Thyroid peroxide antibodies indicates Hashimoto’s under active.

Are you being tested every 3 months? and you don’t have most recent but told TSH still low & in range frees? If levels are abnormal you should be tested 6-8 weekly.

TBII & TRab (TSH Receptor antibodies) are separate markers. Perhaps doctor or lab arranged wrong item? Although interpreted as “positive” ask to view figures because you would be surprised as how often mistakes are made. Ensure either TSI or TRab is tested.

Heavy menstrual bleeding more of a hypo symptoms but can be cause by other factors.

Hair fall can be due to either hypo or hyper or often low ferritin?

Has Folate, ferritin, B12 & Vitamin D been tested recently.

Feeling Hot is more of a hyper symptom.

Carbimazole takes up to 8 weeks to have an affect as it reduced production of new hormone. Once existing levels are used by body the new level is evened out which will be lowered in the range. You won’t know how you feel until later on.

If you do decide to commence carbimazole insist on repeat test no later that 6 weeks later or earlier if symptoms change or worsen.

[Bhattinsami in reply to PurpleNails]

Hi I started with 25 mcg Levo in 2016 then went up to 50mcg and then came back down to 25mcg as advised by my GP.. the folate ferritin level and vitamin b was normal but vitamin d was low so im taking 1000iu every day .. I’m repeating the blood test every 6 weeks now since September 2021.. with ft3 and ft4 showing normal range and tsh supressed .. but I’m confused is it graves or thyroiditis .. thanks

[PurpleNails Administrator in reply to Bhattinsami]

Doesn’t look like Graves & you are know to have Hashis. With Graves FT4 & FT3 typically rise 3x above normal range. There are other reason to have low TSH.

You haven’t had correct antibodies tested for Graves so it is possible you have both conditions.

What are actual results for folate, ferritin, vitamin D & B12. Drs say acceptable if in range but that is not same as optimal. Low levels lower TSH.

1000iu likely far too low a vit D dose to raise levels.

[tattybogle in reply to PurpleNails]

"TBII & TRab (TSH Receptor antibodies) are separate markers. Perhaps doctor or lab arranged wrong item"

i thought thyrotropin-binding inhibiting immunoglobulin (TBII) tested both stimulating and blocking TRab (but is unable to tell them apart ) ?

[PurpleNails Administrator in reply to tattybogle]

TRab THS receptor antibodies includes all antibodies affecting the TSH receptors which includes blocking, neutral & stimulating.

Thyroid stimulating immunoglobulin (TSI) is the stimulating only

Thyrotropin binding inhibiting immunoglobulins (the blocking only)

[tattybogle in reply to PurpleNails]

petty sure TBII must also measure stimulating ones .. see this ncbi.nlm.nih.gov/labs/pmc/a...

i did once find one of Tania Smiths ThyroidPatientsCanada articles that went into more detail about the technical difficulties of getting the blocking ones tested separately and TBII was mentioned ... must admit i'm still a bit confused though, but as far as i currently understand it there isn't any test that ONLY measures the blocking ones.

Done a search for TBII on thyroidpatients,ca thyroidpatients.ca/?s=TBII

Lot's of references , can't remember which page was most useful sorry , but at first glance it certainly seems like TBII does both

[tattybogle in reply to tattybogle]

thyroidpatients.ca/2018/12/...

".... is (or was) the TBII test — Thyrotropin-Binding Inhibitory Immunoglobulin (Khoo et al, 1999), even though the test does not reveal the blocking antibody alone. TBII tests measure both stimulating and blocking TSHR antibodies and add them together to yield a single number. The number is higher in Atrophic Thyroiditis when blocking antibodies are active than when only a mild attack of stimulating antibody antibodies is present. The presence of blocking antibodies can be interpreted in the context of thyroid hormone and TSH laboratory results.

Unfortunately, the old technology TBII test is being replaced by newer TRAb (thyroid receptor antibody) tests. Some of these “third generation” TRAb tests falsely claim to offer exactly what the TBII test used to provide (Ehlers et al, 2019).

It seems that most of these test developers have decided that the hypothyroid form of the TRAb antibody is not important to diagnose, from a test marketing perspective. Most of them simply measure the net difference between stimulating and blocking, giving a number only for the stimulating effect (McLachlan & Rapoport, 2013)."

[PurpleNails Administrator in reply to tattybogle]

So confused but I think you are right. TRab is an updated term for TBII test? Which doesn’t test just blocking as name sugggests, because the 1st generation tests were inaccurate it measured stimulating too ? & neutral?

I think perhaps doctors & labs and using terms interchangeably? Im also not clear if TSI the same as TSab, and if is TBab same as TBII or if these too are separate measures.

Presumably there is a way to accurately measure stimulating & blocking separately and the discovery of Neutral or perhaps not?

[tattybogle in reply to PurpleNails]

as clear as i can currently get it in my head :

TBII is an older test method that is not commonly available anymore. There are several different processes in more common use today ~ usually written as 'TRab ' which do not use the same lab process as the older TBII did .

Some 'TRab' test methods measure just the stimulating antibodies , 'TSI' test method is in this category .

some 'TRab' test methods measure both stimulating/ blocking , with varying degrees of sensitivity to stimulating /blocking.

TBII method also measures both stimulating /blocking ,, but does it in a different way to the 'TRab' tests that measure both....and for some technical reason the TBII test is more useful for seeing if blocking ones are present . When they are present in significant numbers the total result is much higher than when mainly stimulating are present, (but TBII result still has to be looked at alongside the clinical history and TSH results to be sure what it means)

specific TBab tests~ i think these might possibly exist in research environments , but i don't think there is one that is available for use by Doctors /Endo's or us . So in effect we can't (at the moment) measure just our blocking ones on their own , it''s always a matter of interpretation of results and for some reason a TBII test makes this easier than a 'TRab' test does

"TBAb Testing challenges in Atrophic Thyroiditis

TBII stands for “thyrotropin binding inhibitory immunoglobulin.” The test measures the degree to which the TSH receptor prefers to bind to the antibody rather than to real TSH molecules. The test adds both antibody titres together. If you have both blocking and stimulating antibodies, the total TBII inhibition will rise and the test result will be a much higher number. TBII does not discriminate between blocking or stimulating TRAb, so the results are interpreted in the context of your results for thyroid hormones and TSH.

The old TBII antibody tests that could be relied on to clearly reveal TBAb antibodies are becoming harder to find, because they worked better for people with blocking antibodies than for people with mild hyper Graves.

Few TRAb antibody tests are developed with the goal of measuring the blocking antibody. There’s little market incentive to refine a TBAb test when the condition is ignored and the antibody is only present in about 10% of autoimmune hypothyroid patients. A recent research report found that some 3rd generation TRAb assays do measure the blocking antibody (Ehlers et al, 2019)."

thyroidpatients.ca/2020/05/...

added>> i think confusion can occur between the name of the antibodies themselves , and the name of the test that looks for the antibody,

Names of antibodies:

TRab ~ TSH Receptor antibodies ~ there are 3 kinds of TRab :

TSab ~ TSH Receptor Stimulating antibodies (Act like TSH~high T4/T3,Low TSH)

TBab ~ TSH Receptor Blocking antibodies (Block TSH action~low T4/T3 ,High TSH)

Neutral TSH Receptor antibodies. (don't do much)

Names seen on tests for the antibodies:

'TRab ' ~ means you have to assume TSab / TBab /Neutral were all tested together.. most 'TRab' tests are more sensitive to seeing TSab than TBab .

TSI ~ Thyroid Stimulating Immunoglobulin , this just measures TSab

TBII ~ Thyrotropin-Binding Inhibitory Immunoglobulin , this measures both TSab and TBab , but is more sensitive to seeing TBab than 'TRab ' tests.

labs are not using TBII tests so often anymore ... meaning it is now more difficult to prove you have TBab .

[tattybogle in reply to tattybogle]

Note to PurpleNails ~ Further to our conversation above about "how exactly do you test for the blocking one / what exactly does a TBII tell you ? " ... you may find this post / paper interesting (or just more mind bending ).... healthunlocked.com/thyroidu... ( tsh-receptor-autoantibodies-in-patients-with-chronic-thyroiditis-and-hypothyroidism)

anyway it's recent and they test the blocking ones.... i'm still a tad confused about how, or which test , or whether the test in that paper is in any way related to a TBII....But hopefully one day one of us will be able to get it clear in our head , so i though i'd stick it on here , for future reference .

[pennyannie]

Hello again :

We established in your last post that you have Hashimoto's auto immune thyroid disease and that you have transient swings of hyper type symptoms and when these swings swing back you are hypothyroid and why you were originally prescribed T4 - Levothyroxine.

Carbimazole is an anti thyroid drug to block your thyroid hormones and has the opposite effect to Levothyroxine.

AT drugs should only be prescribed when there is the medical evidence of positive and over range Graves antibodies :- TSI and or TR ab.

You have Hashimoto's auto immune disease and do not need this medication as your T3 and T4 levels fall back down into range themselves with you then becoming more hypothyroid and needing T4 medication.

Can you see a different doctor ?

[SlowDragon Administrator]

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Graves Disease antibodies test if in U.K.

medichecks.com/products/tsh...

Please Country you live in on your profile

[Ex111]

I’ve been on carbimazole for a year now and have no side effects. Am currently on 10mg .

[Bhattinsami in reply to Ex111]

Thanks for your message .. how’s your symptoms now and are you feeling better than before ?

[Ex111]

I’m similar to you as I was being treated for hypo thyroidism and on thyroxine from 2018 til 2020 when I flipped to hyper. In February 21 i was started on 5mg carbimazole then in august my results shifted to hyper and have been on 10 mg carb since . FT4 normal at the mo.

I feel completely normal when my FT4 is normal and did so after about six weeks initially .

However I do have thyroid eye disease .

I supplement with selenium and find accupuncture keeps my stress levels down .

I hope you feel better soon .

[Bhattinsami in reply to Ex111]

Thanks for your reply . After taking carbimazooe for five weeks I’m going back to hypo .. how are you feeling now ? Are you still taking them ?

[Ex111 in reply to Bhattinsami]

Hi ya . Yes , been on them 16months now . My dose has been reduced slightly last appointment as my results were heading towards hypo .

What has your doctor advised ?

[Bhattinsami in reply to Ex111]

Yes mine heading towards hypo after using carbimazole for five weeks now dr told me to take it on alternate days .