SlowDragonAdministrator2 months ago

NHS won’t retest

Many members do private full thyroid and vitamin testing annually including antibodies

You should find TG antibodies reduce as TSH drops

TPO antibodies often slowly start to reduce if on gluten free and/or dairy free diet

when were thyroid and vitamins last tested

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

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

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

List of private testing options and money off codes

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

bluehorizonbloodtests.co.uk...

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/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Jaydee1507Administrator2 months ago

A TSH under 1 doesn't mean your antibodies will be low necessarily. Antibodies will fluctuate naturally throught the course of your life as your thyroid is slowly destroyed. Nothing to do to help that other than try giving up gluten which doesn't always work.

tattybogle2 months ago

The level of TPOab will probably fall over many years anyway , regardless of what you do.

Having TSH near 1 (or under) may also help lower them , but it certainly doesn't mean they will ever return to 'normal'.

I had TPOab 2499 [0-50]at diagnosis (2003) .

They had gone up to >3000 [0-50] when retested 6 weeks after first starting on levo. ~ (retesting TPOab is not normal on NHS . I think they were just checking that the first very high result was correct and not a lab error / interference )

Then i had TSH 0.05 ish for about15 years (on Levo) .

TPOab then retested by NHS (2017) ~ much lower but still 'positive' 195 [ no range given] ( i suspect they were requested by a GP who was either checking my original diagnosis or who was wondering why my TSH had suddenly shot up to 7 again )

I never gave up gluten, (or made any other changes) to attempt to lower them .. they probably went down over the years because i now have less thyroid tissue for the immune system to attack and damage...... and as a result of' less thyroid tissue left to damage' , there is 'less Thyroid Peroxidase spilled from my thyroid when it is attacked by my immune system ' ... and so 'less Thyroid Peroxidase for TPOab antibodies to latch on to'.

(obviously i don't know what happened to them in between (or since) these tests , but "gradual lowering overall" is logical ,and TPOab do usually lower over time in patients on long term thyroid hormone replacement.

There will often be fluctuations, as the process of thyroid attack continues..... but 'catching them in the act' would be difficult unless you did your own regular TPOab testing.)

TPOab are not what does the attacking ... the immune system does that .. TPOab (Thyroid Peroxidase antibodies) are basically like 'labels' they identify a substance that 'shouldn't be where it is' in the body ( Thyroid Peroxidase ) and fasten themselves to it like a label saying "somebody clean this up please" ... then 'somebody' (another part of the immune system ) comes along and cleans it up .

Deepatee2 months ago

Thanks all, I went gluten free in January, a month after I was diagnosed. I also worked to improve my gut health by eliminating foods to understand if I had any food sensitivities. This completely eliminated my frequent IBS symptoms and acne cleared overnight. I've continued with a mainly whole foods diet. Thanks for confirming the NHS won't test. I'd rather pay and find out if any of my actions have reduced my anti bodies.

I haven't had my TSH tested for 6 months since going from 50 to 100 levo dosage, but will book in. I also had other vitamin/mineral tests done, only thing that was concerning was that my ferritin was 25, so I've been supplementing with iron. I'll ask my GP to retest this too.

Jaydee1507Administrator in reply to Deepatee2 months ago

Vitamin results don't just need to be in range, they need to be OPTIMAL for your thyroid replacement to work effectively. Use this calculator and check your results are above 50%, ideally more like 70%. Supplement each one if not.

thyroid.chingkerrs.online/

After each dose increase you should get retested after 6-8 weeks to be sure that dose is correct.

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