Timings of supplements with carbimazole

[Bhattinsami]

Can someone advise me on the timing of supplements to get their full benefit?

I’m currently taking 5mg carbimazole at lunch time every day ?

I’m taking zinc and vitamin d during the day .

Also can I eat walnuts whilst I’m taking carbimazole?

Thanks

[PurpleNails Administrator]

As long a the carbimazole is taken as close to the same time every day for consistency, It can be taken with any food / drink, including walnuts.

Is there a particular nutrient you want from walnuts? Often selenium rich Brazil nuts are popular as selenium very good nutrient for thyroid concerns.

I take vitamin D early afternoon as some find it keeps them awake. K2 and magnesium are important co factors for vitamin D. I take the magnesium last thing as night, many find it helps with sleep.

Zinc can be taken when convenient.

[Bhattinsami in reply to PurpleNails]

Thanks for your kind reply . I would like to consume walnut as I have read they are particularly good with hyperthyroidism. Also they are rich in selenium

[PurpleNails Administrator in reply to Bhattinsami]

Walnuts also contain iodine. Not in amounts likely to cause issues but it’s an ingredient listed as possibly helpful for hyper. Often it’s not - If you have excessive intake of iodine from additional sources it can worsen it.

The essential fatty acids in walnuts are really good & reported to help with inflammation often from autoimmune.

[Bhattinsami in reply to PurpleNails]

I have positive TSH RECEPTOR antibodies . So likely that I have got graves autoimmune disease

[PurpleNails Administrator in reply to Bhattinsami]

In previous post you had positive TBIII which members thought was Thyrotropin-Binding Inhibitory Immunoglobulin and is usually accepted evidence of Graves.

These a huge crossover when it come to antibodies. You previously showed positive for Hashimoto’s and were taking levothyroxine so it’s possible you have both conditions.

As your immune system attacked & likely destroyed a portion of your thyroid which lead to under active levels previously, it might explain why the levels are not severely high - , very common to have levels 3x the range. This typically requires much higher dose of carbimazole to control it.

Just ensure FT4 & FT3 are tested as the just the TSH. The TSH will not be reliable. Especially as levels may fluctuate unexpectedly.

I take 10mg alternating 5mg of carbimazole for a nodule, which isn’t autoimmune and has been stable, but my TSH has always been under range even when levels become low.

[Bhattinsami in reply to PurpleNails]

Hi yes in the blood test results done in feb I had TBIII positive and in another previous test report done in January I had TSH RECEPTOR ANTIBODIES positive as well .. what’s the difference between these two ?

Black and white

[PurpleNails Administrator in reply to Bhattinsami]

TBII Thyrotropin binding inhibiting immunoglobulins is the older version of testing which test for blocking & stimulating antibodies.

Newer technology test - Trab - TSH Receptor antibodies - which test blocking, stimulating & neutral.

This explains more & was in a previous post.

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 Bhattinsami]

"in feb I had TBIII positive and in another previous test report done in January I had TSH RECEPTOR ANTIBODIES positive as well .. what’s the difference between these two ? "

Hi Bhattinsami, Your situation is fairly rare, so you can expect a lot of confusion from everybody about your thyroid swinging from Mildly Hypo to Mildly Hyper.

Here is what i currently understand, i hope some of it helps you understand what might be going on, and why it is so hard for anyone to give you a definite answer about 'what you have'

TSH RECEPTOR antibodies (TRab) ~ come in 3 different sorts ~'stimulating' cause High T4/T3 (Graves) ~ 'blocking' cause low T4/T3 ~ and some 'neutral' ones:

Your TBII test measured both the stimulating and blocking sort , and the positive result means you had quite a lot of of the blocking kind of TRab (which cause 'hypo' thyroid)

and probably some of the stimulating kind of TRab (which cause Graves /Hyper )

We don't know how many of each sort , (because the test isn't able to tell for sure ).

Your balance of the stimulating /blocking sort may change over time... and so you may swing from one state to the other Hypo / Hyper .. and for some periods they may balance each other out. meaning you are OK without any meds either Levo or Carbi

We do know you had some of the 'stimulating' sort acting recently because your T3 went over range and your TSH went under range.

You also have some TPOab which are usually associated with Hashimoto's (Hypo ), but these can also be present in Graves (Hyper)... so we can't say for sure whether your previous mildly hypothyroid state (when you were given 25mcg / 50 mcg/ 25mcg Levo) was caused by Hashimoto's damage ( ie. your thyroid was too damaged to produce enough T4/3).... or if it was caused by your 'blocking' TRab (ie. blocking your TSH from getting to your thyroid to ask it to make enough T4/3).

Even though you have TPOab It's not totally certain you do have Hashimoto's.. Some Graves patients seem to have some TPOab anyway .. so your hypothyroid period could have been caused by your 'blocking' TRab , or by Hashimoto's .. and at the moment nobody can say for sure .. time and what happens to your thyroid function over the next few years will probably make things clearer for everyone.

I've made that all sound like i''m very sure of what's happening to you , to avoid having to write 'possibly / maybe' in every other sentence ... in truth i'm not 100% sure of any of it , and neither will anyone else be , not even your Endo , because they don't find many patients like you , and there is not much research done on the different sorts of TRab antibodies to prove what is actually happening..... They have to figure out which type of TRab is having an effect by looking at what is happening to the patients thyroid levels at the time .

Usually it's easy .. the patient is hyperthyroid , and has some TRab, so even of the tests can't tell them how many of each sort of TRab , they can be sure they are mostly / all the stimulating sort because the patient gets extremely high T4/T3 , and nothing else weird happens .

When they get an occasional patient who swings between hypo / hyper / hypo , who has TRab , and TPOab , but doesn't ever get as Hypo as you would expect for Hashimoto's , or as Hyper as you would expect for Graves... then it could be that :

~The effects of the blocking and stimulating sort are balancing each other out to some degree.... or

~ The levels of blocking / stimulating antibodies are both fluctuating over time .... or

~ There is some hashimoto's damage, which is limiting the mount of T4/T3 that the thyroid can produce , so this is limiting the effect of the stimulating sort .

I have linked you name to a recent post from helvella which has a study of some other people with Hashimoto's and TRab in case it is of any help to you.

[Bhattinsami]

Really grateful to you for so much detail post trying to explain my blood results .. I think my endo does not even know why I’m not much hyper and neither hypo .. like my t3/t4 inside normal range since last September but tsh remaining suppressed so he dicided to prescribe me carbbimazole to see if it effects my suppressed tsh

[tattybogle in reply to Bhattinsami]

You're welcome

Sorry you have become 'so fascinating' ... i'm sure you'd rather your thyroid was being much less 'interesting' . It can't be much fun , not knowing what the ---- is going on with it .

[Bhattinsami in reply to tattybogle]

Yes that’s true it’s not much fun when you don’t know what’s happening and how to stop it happening . Thanks for all the help this forum provides

[tattybogle in reply to Bhattinsami]

"I think my endo does not even know why I’m not much hyper and neither hypo .. like my t3/t4 inside normal range since last September but tsh remaining suppressed..."

These articles may be interesting for your Endo, and you to read, and may help you both understand what could be going on.

* note * Reading any of these will be easier if you remember that "TSHR antibodies" is just another way of writing "TRab" (Thyroid Stimulating Hormone Receptor antibodies )

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

thyroidpatients.ca/2020/04/... (remissions-and-fluctuations-trab)

thyroidpatients.ca/2020/04/... (remissions-and-fluctuations-trab page 2)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

thyroidpatients.ca/2019/06/... (tshr-antibodies-can-distort-tsh-secretion)

"However, TSH receptors are located all over the human body, not just in thyroid tissue....

The pituitary gland has TSH receptors on it as well......

Cause 1: The pituitary senses TSH receptor stimulation from antibodies and is tricked into thinking that it’s secreting too much TSH in response to thyroid hormone.

Effect 1: The TSH-receptor-overstimulated pituitary reduces or stops its TSH secretion even when thyroid hormones are normal and the patient is not thyrotoxic at all.

ALTERNATIVELY, by the same physiological mechanism but opposite cause and effect direction, blocking antibodies can amplify the pituitary “voice” of TSH secretion to unnecessarily high levels given normal or high-normal T3 and/or T4 levels.

Cause 2: The pituitary can’t sense enough TSH receptor stimulation because antibodies are blocking its “ears” (TSH receptors) to its own TSH secretion. The pituitary is tricked into thinking it’s not secreting enough TSH.

Effect 2: The TSH-receptor-blocked pituitary secretes extra TSH. Now the TSH looks unreasonably high, and doctors are puzzled… should they increase your dose to try to bring down the TSH? That could cause you some health problems!

TSHR ANTIBODY TUG OF WAR

The three variants of the Graves’ disease antibody (stimulating, blocking, and cleavage) can coexist in the same patient.

One or another variant can dominate over the others over many years or months.

As these antibodies play a game of tug of war, thyroid gland secretion and pituitary TSH secretion are both victims.

Research has shown that TSH levels are often exceedingly high in patients with atrophic thyroiditis at the time of diagnosis. Over time, TSH-receptor antibodies can continue to fluctuate in Graves’ and atrophic thyroiditis, even after the thyroid gland is removed, destroyed, or fully atrophied.

In a person with this type of autoimmune thyroid disease, there is no such thing as an “antibody-ectomy.” Getting rid of the gland does not get rid of the antibodies to the TSH receptor."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

thyroidpatients.ca/2019/07/... (tsh-can-be-very-misleading-during-thyroid-therapy)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[PurpleNails Administrator]

It’s really unusual to be hypothyroid for 5 years even mildly (50 - 75 mcg) then become subclinical hyper.

Your TSH is low but your levels are not high. So really the medication is to get your TSH to a level your doctor is happy with.

Just make sure the FT4 & FT3 do not go too low / under range in order to get the TSH to what’s acceptable doctor.

How often are your levels going to be checked?

When you were hypothyroid where did your TSH sit? If it was low (to have sufficient FT4 & FT3 levels) it’s possible it stays low.

Sometimes the TSH doesn’t respond. Mine didn’t even when low for several months.

[Bhattinsami in reply to PurpleNails]

Yes I started taking levo from 2015 and then my gp started tapering it down from 2020 and then told me to completely stop it in may last year . I made a mistake that I did not ask for the copy of blood results when I was hypo but last year in April after getting covid vaccine my symptoms started getting worse like palpitations and hand tremors and weight loss etc . In those days there were covid lockdowns on and off as well .

So I don’t know what my levels were from 2015-2021.

But I started asking for copy of blood reports since last April to keep a track record of what’s happening .

In April last year my T4 was like 32 and t3 was high as well . When they stopped my levo it started coming down to normal range and came back in range in sep/oct ..but TSH remained 0.02 suppressed in all these times .

[PurpleNails Administrator in reply to Bhattinsami]

Is it possible you were “over” medicated during that time? If you were even by a small fraction - it might have been enough to suppress TSH & “damage” the hypothalamus–pituitary–thyroid (HPT)axis.

This means normal feedback loop is down regulated and your TSH would stay sluggish and low in response to normal / low levels.

I mentioned before I had elevated levels for many years missed by doctors - my TSH doesn’t respond even to low FT4/FT3.

The technical term being “hypothalamus–pituitary–thyroid (HPT) axis down regulation”

Have you tried to obtain historical records - it might still be possible. Were they hospital or GP held records?

[Bhattinsami in reply to PurpleNails]

Can I ask them to provide me the previous records? ? I mean legally if I ask are they bound to give me reports ? … I also think that I was over medicated for too long . Especially in 2020 due to covid lockdowns they did not had my bloods done regularly .. now I’m doing my blood work done every 4-6 weeks ..You are mentioning your own examples , did they put you on any medication like anti thyroid drug like carbimazole to get your TSH levels up.. as they doing to me now ..

[tattybogle in reply to Bhattinsami]

Yes they do have to give them to you . and you have a right to have them as long as a GP has already seen them.

if it's just few blood results you want, from not that long ago , then the GP receptionist may be able to just give you printout of those specific results ... they shouldn't ask why you want them , but if they do just say " for my records". They may feel the need to ask the GP first , because the receptionists often aren't confident if you can have them or not , so if they do say that , just say you'll collect a printout later once they've checked with gp .

to get 'older ' blood test results, or lots of information, you may have to do an S.A.R (Subject Access Request ) GP Reception should have a form for this somewhere , or if it's not ' a form' anymore , they should tell you how to do it . (Hospital records sometimes need a separate application to the hospital, but GP record will usually have most of what you need )

you specify what information you want eg. "all blood tests / GP consultations , or whatever... from 'x' date to 'x' date".

It takes them 28 days to sort it out and you have to provide some I.D to get it . mine was all put on a password protected CD .

It's interesting you had covid vaccine followed by high T4/T3 levels ... there was a post a little bit ago about a study from a clinic that had 12 cases of new onset / relapse of Graves hyperthyroidism in the 3/4 weeks following Covid vaccine.... i will try and find it again .... i suppose it could be relevant to you.... although by the sound of it they were already reducing your dose before you had covid vaccination ? (so your TSH must have been going low and/ or fT4 going high anyway, even before you had the vaccine )

as purplenails says .. if you did have high T4/T3 levels for a while , it could be that your TSH is 'downregulated ' and is just taking months and months to come back to life ..... i didn't realise you had ever had properly 'high' T4/T3 levels.

TSH can sometimes be very slow to wake up and move once it's been low for a while.

You really will have to keep a close eye on your fT4 /fT3 levels when you are taking carbimazole .... . basically , you can't really trust your TSH to be telling the truth .. it might just be being a bit slow to wake up .... so you have to pay close attention to fT4 /ft3 levels ... don't let them get so low on carbimazole that you start to feel unwell just to try and make to your TSH do something .... TSH 'by itself' isn't particularly important ,and it's not particularly reliable .

fT4 /fT3 and how you feel are much more important, and reliable guides ,than TSH is. .

[PurpleNails Administrator in reply to Bhattinsami]

Yes I now take carbimazole. I currently take 10 / 5 mg alternating, started 3 years ago on 20mg. I have a nodule which raises FT4 & FT3 - the carbimazole keeps FT4 & FT3 in range but unfortunately the TSH doesn’t respond.

Doctors will expect the TSH to rise and with me some tried to increase the carbimazole further even when FT4 & fT3 were low - in an attempt to “make” the TSH rise. I did keep them low for about 4 months, The TSH did start to lift but it highest was 0.31 which was still under range I felt very hypothyroid.

If GP held records see if practice provides online access and request historical record.

Are you in UK or elsewhere? In UK you are legally entitled to medical record.

If you are in England practices are contractually mandated to provide online access to your medical record. Outside England do not have same arrangement & provision varies.

If not online or historical can request in writing. (SAR some practices may have own form)

For hospital medical records most hospital have a coordinator which can be found on the hospital website. It might be listed as health records department / library. If not on website would try the switchboard and ask it there’s a records department.

Hospitals usually have their own application form where you can request single, or entire record. I have done both. The single record was emailed back quite quickly. The full record being a larger record was posted. ID and a witness signature is required which I was able to submit via email. Photo copies via post & can be used too.

[Bhattinsami in reply to PurpleNails]

Thanks . I will try to get my earlier blood test reports to find out since when t3/t4 started rising ..

[Bhattinsami in reply to PurpleNails]

hi there , i have done my repeat blood tests after taking carbimazole for 5 weeks and now my blood test showing these results . According to these results now I’m going back towards hypothyroidism .

Black and white

[PurpleNails Administrator in reply to Bhattinsami]

If same lab range as before your FT4 is below range, yes you are now hypothyroid. No FT3 test unfortunately.

5mg was low dose but your FT4 & FT3 were within range? So it’s not entirely surprising you are now hypothyroid. You also have history of Hashimoto’s?

As I understand it it was low TSH and Positive TRab which prompted the antithyroid?

Taking every other day might mean the gap between doses will be too wide allowing a greater time to start producing higher levels of hormone. Your other option is to use a pill splitter and take half a pill daily. I think now the levels are too low. Taking every other day and retesting in 5 weeks is a appropriate approach at this stage.

[Bhattinsami in reply to PurpleNails]

hi thanks for your reply. As according to my new blood results I’m going into hypothyroidism, is it not suitable to completely stop taking carbimazole? Or do I have to taper it down slowly?

Also I’m not sure about hashimoto? As my endo and GP never mentioned it to me ..my ft3 and ft4 were in the normal range since end of last year but TSH were still suppressed so endo started me on carbimazole , but after taking it for 4 weeks the TSH has risen from 0.02 to 3.26.

[PurpleNails Administrator in reply to Bhattinsami]

It’s difficult to say because you’re thyroid levels aren’t over range so even a small amount of carbimazole will push you to hypothyroid. Stopping completely will cause your TSH to go low again - which is why the doctors are using an anti thyroid to make your TSH rise. They thyroid levels will have to be kept low to make TSH respond.

[Bhattinsami in reply to PurpleNails]

Since last week or so I am starting to feel more itchy and burning feeling in my hands and feets . I thought that’s the sign of hyperthyroidism but my last blood test show that I’m in the range of hypothyroidism. What could be the reason ? Is this sign of hashimoto?

[PurpleNails Administrator in reply to Bhattinsami]

Carbimazole can cause itching. If it’s mild try an antihistamine which could settle it down,

Check with doctor if it’s severe.

Burning hands & feet can be caused by nutrient deficiency and that occurs with both high or low thyroid levels.

Blood test are a clear sign you are hypothyroid, symptoms alone are too varied & diverse to rely on entirely. They can be very similar to hyper/hypo. Often as ofter factors contribute to symptoms.

You have a history of low levels from Hashimoto’s & TRab positive sub clinical (non hyper) - low TSH. So you have both autoimmune affecting you. As carbimazole lowers in range levels to lower/ below range to make TSH respond its likely longer term you’ll return to hypothyroid. As you have both antibodies do you may have a tendency to fluctuate more.

If you find adjustments to carbimazole do not do the trick, you may have try block and replace where you take a high dose of carbimazole to block thyroid function completely & then take a replacement levo dose. This is better at balancing unstable levels.