advice please?

[Jemsr]

After having my 3rd child, I was not feeling good and had my tpo tested which came back as 390 but tsh was fine -2.9, a few months later I had the tests done again and tpo had climbed to 550 and tsh 7.9 and t4 was 10. It took me 6 weeks to get hold of my GP who then prescribed levothyroxine 50mc once a day. I wasn't comfortable begining meds based on bloods from so long ago so I took a private blood test, I didnt do the tpo but I tested the for tsh which was 4.2 and t4 which was 11 range 12 - 22. I cant make out what is going on? Do I begin the meds? how come tsh went down? ant advice appreciated

[HealthStarDust]

It’s unusual to be prescribed levothyroxine with just one over range TSH. Although you’ve not including ranges, that T4 seems low.

TSH changes all the time for a myriad of reasons. It’s very unreliable.

[SlowDragon Administrator]

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Very common to start after pregnancy

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

Has GP tested any of these

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

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.

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

They just treat the subsequent hypothyroidism

When you start on 50mcg levothyroxine

Bloods should be retested 6-8 weeks after each increase in levothyroxine

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

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]

TSH changes day to day with Hashimoto’s …..and also depending on what time of day you test

TSH is highest early morning

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.

Most common by far is gluten.

Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE guidelines

or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

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...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Hashimoto’s and leaky gut often occur together

Post discussing gluten

healthunlocked.com/thyroidu...

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

[PurpleNails Administrator]

Welcome to forum.

Positive TPO antibodies confirm you have Hashimoto’s called autoimmune thyroiditis in UK. The antibodies are clearing up substances which should be there. Once you have a positive result it confirms you have autoimmune activity occurring. Antibodies fluctuate & most doctors refer to under active thyroid rather than autoimmune thyroiditis or its term Hashimoto’s. The autoimmune aspect isn’t treated just the low levels.

Your immune system attacks you thyroid and early on this causes high fluctuations of thyroid levels, the damaged thyroid cell release thyroid hormone but as the damage progresses it lowers the functioning ability, your levels can jump around but ultimately your thyroid levels are becoming low & you need replacement.

Don’t think of it a medicine / drug it is replacing a hormone which you now require.

The TSH is a pituitary hormone , it signals thyroid to work more or work less.

Most have a TSH around 1. The higher it is the lower the thyroid levels tend to be ie the TSH should reflect where your thyroid level are but it’s not reliable. The TSH takes time to respond and can appear lower than it should.

As TSH of 7.9 and positive antibodies is firm criteria to commence replacement. Your GP was right to start treatment, a repeat test wasn’t required.

You last private test showed FT4 below range, so you do need replacement hormone. 50mcg is a standard starting dose. It’s likely you’ll need further increases. This is done gradually by retesting and increasing by 25mcg per day. Try to stick to same brand, this can be an issue with new dose levels.

You also need to test FT3 levels as this is the active thyroid hormone. Important to test Folate,ferritin,B12 & Vitamin D. When these are optimal Levo works well & converts to T3.

Tests should be done as close to 09.00, delay replacement until after draw, fast overnight & cease any supplements containing biotin. This will show consistent circumstances for comparing test results.

Always show result & lab range for each test, ranges vary between labs.

[HealthStarDust in reply to PurpleNails]

As TSH of 7.9 and positive antibodies is firm criteria to commence replacement. Your GP was right to start treatment, a repeat test wasn’t required.

That’s interesting. I was under the impression with or without antibodies, 2 TSH over range some months apart were required according to official guidance.

[PurpleNails Administrator in reply to HealthStarDust]

You are correct & I should have said that I agree with the doctor that recommend replacement at that point.

Which official guidance? For example Nice guidelines is open to interpretation & not nearly as specific as they could be.

nice.org.uk/guidance/ng145/...

This why some doctors might choose to insist on 2 above range TSH 3 - 6 months apart. Then there are doctors that think unless TSH is over 10 there’s nothing to treat. It really depends on the doctors grasp of thyroid issues & compassion regarding symptoms.

Nice guidelines do note - A diagnosis of subclinical hypothyroidism is suspected — positive TPOAb can predict progression to overt hypothyroidism.

Link below is Pathway for LT4 treatment, - TSH above 5 and symptoms of hypo symptoms can be sufficient criteria, with additional high TPO antibodies is further grounds to start treatment.

gps.northcentrallondon.icb....

[HealthStarDust in reply to PurpleNails]

In the NICE Guidelines, For subclinical ie. Above range but below 10

1.5.4 Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

Although, as you say, I agree that the guidelines are open to interpretation, not very clear and generally pants!

Interestingly, it’s been updated only just recently. So I’m not sure what I must read in the version before. I wonder how one gets a hold of the older versions?

[HealthStarDust in reply to HealthStarDust]

PurpleNails

Looks it’s they’ve just added the following:

1.2.11 Ask adults, children and young people with suspected thyroid dysfunction about their biotin intake because a high consumption of biotin from dietary supplements may lead to falsely high or low test results. [2023]

[PurpleNails Administrator in reply to HealthStarDust]

Prehaps Dr looked at elevated TPO 2x and substituted the TSH for TPO. I’m suprised the lab tested TPO 2x as often they refuse.

[HealthStarDust in reply to PurpleNails]

The whole testing thing seem to be in part a postcode lottery thing. The main thing I suffer from is that GP can request T3 but not FT3. It seems my local lab don’t do FT3, which is absurd so I assume only specialists can request FT3.

[HealthStarDust in reply to PurpleNails]

Me again.

Nice guidelines do note - A diagnosis of subclinical hypothyroidism is suspected — positive TPOAb can predict progression to overt hypothyroidism.

In which section is this in as I can’t find it?

[PurpleNails Administrator in reply to HealthStarDust]

cks.nice.org.uk/topics/hypo....

[PurpleNails Administrator in reply to PurpleNails]

Right between where + Do not arrange repeat testing of TPOAb. Is stated 2x

[HealthStarDust in reply to PurpleNails]

I see what’s happened here to cause the confusion. You interchangeably used NICE Guidelines with the CKS, which I am trying my best not to do as it causes confusion even though I personally believe the CKS are a form of official NICE Guidelines, that can be equally relied on as I found with my personal experience.

[Jemsr in reply to PurpleNails]

Thank you for all the info will have a read through.