Carbimazole

[Kelz21]

I have had a horrendous few weeks health wise. This is due to fibroids, however what it has distracted me from is the fact my thyroid consultant had doubled my thyroid meds which amongst everything else I just went with.

I have been so low in mood, tearful every single day, exhausted, drained and feeling disconnected from the world. And assumed it to be the heavy period situation.

I am not saying it is solely thyroid meds but it only came to me today that feeling this low before was because they had pushed me near under-active trying to straighten out my TSH (I think)

I have an appointment on the 28th so won’t mess with things until I’ve had bloods and gone to that appointment, but with everything else going on (awful painful periods and so heavy etc) it didn’t occur to me! This has actually happened before and the high dose was the cause.

[PurpleNails Administrator]

What was the original dose & increase to.

What were your levels (TSH, FT4 & FT3) were they very over-range?

[Kelz21 in reply to PurpleNails]

The original dose was 5mg (very low maintenance) then increased to 15mg that brought me to almost underactive so they settled on 10mg which is still low dose but was enough to knock me out last time.

Test results

[SlowDragon Administrator in reply to Kelz21]

when was this test done? On 10mcg Carbimazole?

Ft4 is extremely low

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

what vitamin supplements are you taking

[Kelz21 in reply to SlowDragon]

10th October this was from

I’m due again next week to be rechecked

This was a dr blood test I sent onto my thyroid consultant as I was being tested for something else.

I’m just on a multi vit (Vit c B12 combo)

[SlowDragon Administrator in reply to Kelz21]

Multivitamins never recommended on here

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Stop multivitamins at least a week before any test

Suggest you get vitamin levels tested now

Likely low vitamin D, possibly low B vitamins

once got results only supplement what’s necessary

[Kelz21 in reply to SlowDragon]

I didn’t realise!! Thank you! I even gave the multivit to the specialise who said she had no concerns with me taking those! 🤯

I will stop them now as bloods due next week

[PurpleNails Administrator in reply to Kelz21]

Was these the results which prompted an increase.

Doctor is going by TSH only and not concerned your FT4 is already extremely low. So tripling carbimazole dose will push you hypothyroid . FT3 wasn’t tested either and it should have been as TSH isn’t reliable. The TSH can remain low and not reflect levels after being hyper or your FT3 could be high but we don’t know because it wasn’t tested,

[greygoose]

So, you're still on carbimazole five years after your first post, still with negative TRAB and/or TSI? Did they ever test your Hashi's antibodies: TPO and Tg antibodies? Has it never occurred to them that you might be on the wrong treatment?

[Kelz21 in reply to greygoose]

I don’t know but will ask! Their solution (advice) continually to me still being on Carbimazole this long is to remove the thyroid 🫣 which I resist

[greygoose in reply to Kelz21]

Good for you! They only want you to do it because it's easier for them. But without the antibodies tested you cannot know if you're on the right treatment.

[pennyannie]

Hey there again ;

Seems strange that the antibodies have never been run to confirm which thyroid disease you are dealing with -

Graves and Hashimoto's can present, initially in the same way - and why the antibodies need to be run as the medical evidence and proof of which disease you are dealing with and why /which medicine, if any, is prescribed.

Looking back there appears to have been as issue identified with your thyroid way back in 2012 but you only strated the Anti Thyroid drug - Carbimazole around 4 years ago :

Well - I'm confused - and surely the first question is to ask which antibodies were run - and what were your TSH, and Free T3 and Free T4 results and ranges at this diagnosis ?

Do you have any current readings of your TSH + T3 ad T4 and ideally we need a strong core strength to help support us through illness and a ferritin, folate, B12 and vitamin D reading and range would be useful and we can advise where optimally. these levels need o sit within the ranges.

[Kelz21]

They said in the early days I “present” as graves but results don’t support this

They haven’t really referenced it since.

These are the only results I have that are recent but will try and dig out the ones prior

[SlowDragon Administrator in reply to Kelz21]

Suggest you organise testing yourself

Dosing by TSH is completely useless

You always need Ft4 and Ft3 tested

And extremely important to maintain OPTIMAL vitamin levels

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Medichecks also offer Graves Disease antibodies test

Has to be by private blood draw, not DIY finger prick test

medichecks.com/products/tsh...

Are you on gluten free diet

If not get coeliac blood test done before considering trial gluten free

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

[Kelz21 in reply to SlowDragon]

Thank you!!! This is really helpful!!