Trying to find out cause of long term symptoms. Bloods for thyroid peroxidase ab in 2008(!) 127 (normal level at that time was 0-50

[Ally7]

Hello,

Thanks for accepting me. I have been long term ill with chronic fatigue, hair thinning, joint and muscle pains. Visual disturbances, and many more issues.

I asked for copies of all my notes. Checked back to 2008 and found one test for thyroid peroxidase ab which said it was 127.

I have coeliac disease (autoimmune) and wonder if this could be the root cause of the horrendous brain fog too and other symptoms I’ve described?

I have phoned my gp who said my tfts have been ok but I’ve pushed for this test and folic acid and ferritin as these have been previously low. So have that on Monday.

Is it diagnosed on the back of blood tests please?

Thank you.

Ally.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

As you are on strictly gluten free diet, more likely TPO antibodies are within range

NHS refuses to test TG antibodies unless TPO antibodies are high

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

What vitamin supplements are you currently taking

hairloss often linked to low iron /ferritin

Joint pain low vitamin D

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests early morning, ideally before 9am

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 by DIY fingerprick test

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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Coeliac of Gluten intolerance is often a an issue too.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[Ally7 in reply to SlowDragon]

Thank you so much for replying. Do you know if they routinely check the Tpo antibodies along with the other thyroid tests please? I was on a gluten free diet at the time the last one was tested but my bloods for tsh have been normal.

Thank you so much.

[SlowDragon Administrator in reply to Ally7]

GP should test thyroid antibodies, suggest you ask

As coeliac you should have vitamin levels tested at least annually

What vitamin supplements are you currently taking

[Ally7 in reply to SlowDragon]

I’m not on any at the moment. Would the hashimotos be tested with just the thyroid peroxidate please?

They don’t test my vitamins. But thanks. I will ask.

[SlowDragon Administrator in reply to Ally7]

How long have you been diagnosed as coeliac You should have full testing including thyroid and vitamins annually

coeliac.org.uk/information-...

[Ally7 in reply to SlowDragon]

I was diagnosed in 2003. Not under a gastroenterologist at all. Gp doesn’t do routine bloods for it. Im extremely strict with it.

[SlowDragon Administrator in reply to Ally7]

Then it’s definitely time you got annual testing organised via GP

Print out that link from Coeliac U.K.

Low vitamin levels very common

[SlowDragon Administrator in reply to Ally7]

Hashimoto’s

Can be diagnosed with high TPO or high TG antibodies

Significant minority of Hashimoto’s patients only have high TG antibodies

20% of Hashimoto’s patients never have high antibodies

So if both thyroid antibodies are negative an ultrasound scan of thyroid can diagnose

[humanbean]

Unfortunately, it is very common in the UK to just test TSH (Thyroid Stimulating Hormone).

Getting Free T4, Free T3 and antibodies tested is not easy, although those tests are essential. There are thyroid conditions in which TSH is not informative e.g. central hypothyroidism in which the problem is not with the thyroid but is with either the pituitary or hypothalamus and this means that TSH levels are too low for the person's needs.

Since you have a gut problem and might have a thyroid problem there is a strong possibility that your nutrient levels are low. You should ask for testing for ferritin, vitamin B12, folate and vitamin D. These are all essential in helping the body to convert T4 (the main - storage - thyroid hormone) into T3 (the active hormone). If T3 is low then people get hypothyroid (underactive) symptoms. If T3 is high then people get hyperthyroid (overactive) symptoms.

If ferritin is low it would be worth getting an iron panel tested.

If you can't get any joy from your doctor then, if finances permit, it is possible to get testing done privately.

Thyroid UK recommends some companies and offers discounts on some prices :

thyroiduk.org/help-and-supp...

If you decide to pay for testing you should check with the forum, before you spend any money, that you have chosen the most appropriate tests for your needs, otherwise you could just be wasting money.