Advice

[Mark2027]

I'm seeing a neurologist for balance problems and occasional slurring of words. I was diagnosed with Pernicious Anaemia (currently on B12 injections) in July this year and have had vitiligo for over 20 years. One of the blood test done was for TPO antibodies with were 78 which apparently had been at around this mark since 2021 at least. Outside the range but not Hashimoto level. My TSH is normal there is no FT3 or FT4 test on my records, I have a ultrasound and Thyroglobulin test at the end of the month. Is there anything I should be asking?

[humanbean]

For info on the treatment of Pernicious Anaemia (PA), the PA Society has a forum on HealthUnlocked you can join here :

healthunlocked.com/pasoc

[greygoose]

One of the blood test done was for TPO antibodies with were 78 which apparently had been at around this mark since 2021 at least. Outside the range but not Hashimoto level.

So what is 'Hashimoto level' then? As far as I know, it's top of the range. What is the point of having a range if... Pretty certain you have Hashi's and you're just being fobbed!

[Mark2027 in reply to greygoose]

The neurologist words not mine and I do feel fobbed off - but they all seem to be a lot higher. He said some people just have the antibodies??? Although I know if you have one autoimmune conditions you could have more.

[greygoose in reply to Mark2027]

Well, of course some people just have antibodies - everybody has some - but within the range. Over-range means there's a problem.

Yes, I realise it wasn't your words, just wondered if you'd asked, because that would be my first question: what's the point of a range if you're just going to ignore it?!?

[humanbean]

One of the blood test done was for TPO antibodies with were 78 which apparently had been at around this mark since 2021 at least. Outside the range but not Hashimoto level. My TSH is normal there is no FT3 or FT4 test on my records, I have a ultrasound and Thyroglobulin test at the end of the month. Is there anything I should be asking?

Once someone has one or more autoimmune diseases e.g. PA and vitiligo as you have, their risk of developing more is increased when compared to people with no autoimmune diseases.

For more info on thyroid antibodies - there are several types :

labtestsonline.org.uk/tests...

Note that thyroid antibodies can fluctuate a lot, and could even disappear altogether, but just because they drop into range one day they could be high the next week.

TSH being "normal" is not a guarantee by itself that you do or don't have a thyroid disease of some kind. To know more about your thyroid status you really need to get more info about your thyroid hormone levels, specifically Free T4 and Free T3. It would also be good to get more info on your thyroid antibodies including Tg antibodies. Some people have Tg antibodies as an indicator of autoimmune thyroid disease, but never have TPO antibodies.

So, what you should be asking :

1) Ask the receptionists (not the medical staff) at your surgery for access to your blood tests results and ranges online. It would be best if you can get results for at least the last 2 - 3 years but some surgeries don't allow for historic results to be made available. If access isn't available, move on to ...

2) Ask the receptionists (not the medical staff) at your surgery for a copy of the most recent blood test results and reference ranges you've had done over the last two or three years. Say that you will come back in a couple of days to collect the results.

If you have trouble getting any results you are legally entitled to copies of your results. Theoretically a verbal request should be enough, but surgeries can be obstructive. If that happens you could write a Subject Access Request, which is described on this link :

ico.org.uk/for-the-public/y...

I've never used the ICO online service myself (it's new), I've only ever written a letter, so can't say how good or bad it is or how well it gets results.

...

If you get the results and reference ranges and the information you want is non-existent or sparse, and if you can afford it, you can buy private testing without involving doctors.

If you get to that stage we can advise on your options for getting this testing and how to get the best out of it.

[Mark2027 in reply to humanbean]

Thanks

TSH 21/2/23 2.53

14/11/22 3.13

26/4/21 1.8

range 0.38 - 5.33

[SlowDragon Administrator]

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

Also both TPO and TG thyroid antibodies tested at least once

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

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)

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus 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

[SlowDragon Administrator]

if currently taking daily vitamin B complex or any supplements that contain biotin important to stop this 5-7 days before testing as biotin can falsely affect test results

[Mark2027 in reply to SlowDragon]

Thanks I am on vitamin B complex so I will raise.

[SlowDragon Administrator in reply to Mark2027]

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

You also need full iron panel test including ferritin

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

And vitamin D

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk