Long term Carbimazole

[Sunny70]

Sorry, me again! If I take Carbimazole long term what bloods should be monitored for good health? Thanks again!

[pennyannie]

Hey there again ;

My exprience was that I was dosed and monitored on my Free T3 and Free T4 and TSH levels.

My primary care doctor liaised with hospital endrinology and followed the hosital recommendations and I also had quarterly hospital follow ups, I think, as this was back in 2003/4 :

With hindsight I would have been requesting ferritin, folate, B12 and vitamin D - whether I got them or not is another matter - now I know there are private companies who we can use, i would do these myself if my request wasn't allowed through the NHS.

[Sunny70 in reply to pennyannie]

Hi, thanks, my GP does the same but I’ve never been seen that often and for now it’s telephone consultations. I’m going to request a copy of results so I can understand things a bit better 😊

[pennyannie in reply to Sunny70]

Yes, good idea -

Get copies of the results, including the very first one, prior to taking the AT medication, so we can see how high your T3 and T4 were raised at diagnosis.

Your should also have there the medical evidence of which antibodies were over range and positive and on which your medical treatment is based.

Post the results and ranges back here in a new post and we can help explain them to you :

[Sunny70 in reply to pennyannie]

I will, I’m going to put a written request in today and will let you know, thanks for taking the time, this early, to reply.

[pennyannie in reply to Sunny70]

No worries - and this is a good time for me, at least !!!

[pennyannie in reply to Sunny70]

How much Carbimazole are you taking daily ?

[Sunny70 in reply to pennyannie]

Oh I’m not a morning person! He’s restarted me on only 10mgs daily which I thought was a bit low as I was on a maintenance dose of 5 mgs and that’s another reason I want to compare blood results as they may not be as bad as when I was first diagnosed. I could really do without all of this, as I’m sure everyone else on here feels the same!

[pennyannie in reply to Sunny70]

OK then- once you have the results and ranges just post on here with the dose alongside the results and we can take it from there :

The anti thyroid drug is prescribed to block your T3 and T4 rising any further and as the immune system response calms down, and your body calms down, your T3 and T4 levels should fall back down into range, and the blocking, AT medication titrated down, accordingly.

There are many people of this forum who are on AT medication long term - I just wish I knew all this back in 2003/4 when diagnosed with Graves Disease.

[Sunny70 in reply to pennyannie]

Don’t know if they’ll have the dosage with each result but I’ll ask that too.

I know it’s an absolute minefield 😒

[pennyannie in reply to Sunny70]

Oh, please don't worry and apologies if I've gone on a bit ;

I know I tend to overthink everything - just get the results and ranges :

[Sunny70]

No I’m pleased you’ve suggested all that you’re being a great help, would be nice if GP surgeries were as helpful !

[SlowDragon Administrator]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Down to you to keep good records of what dose Carbimazole at each test

For full Thyroid evaluation you need TSH, FT4 and FT3

TSI or Trab antibodies for Graves’ disease

plus ideally TPO and TG thyroid antibodies test

EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common with Graves or Hashimoto’s

Low vitamin levels are also extremely common as we get older

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning

This gives highest TSH

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Link about thyroid blood tests

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

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Graves Disease antibodies test

medichecks.com/products/tsh...

Good info on Graves’ disease

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

Are you or have you tried strictly gluten free diet

Cutting gluten out helps many people with Graves or Hashimoto’s

But request coeliac blood test done FIRST

Or test yourself

lloydspharmacy.com/products...

If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)

If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten see if symptoms get worse.

chriskresser.com/the-gluten...

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

[Sunny70 in reply to SlowDragon]

That’s such a lot of information and thanks I will read it carefully. I will ask about online records but have to ask ins writing for blood results etc which I’m going to do today. It’ll be a battle trying to ask for other blood tests to be taken as you suggested but I’ll certainly try! Thanks again.

[Sunny70 in reply to SlowDragon]

Why have you turned off the post?

[SlowDragon Administrator in reply to Sunny70]

You mean why have I turned the other post off, asking same question

To keep replies all on the one post ….otherwise you get lots of duplicate replies

[Sunny70 in reply to SlowDragon]

I thought mine was the only one, thanks