Rapidly rising TPO Antibodies, should I be worr... - Thyroid UK

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Rapidly rising TPO Antibodies, should I be worried?

Mummybear0213 profile image
12 Replies

Hi again everyone.

Last Monday I did a home blood test with MMH, the full health + tpo. The results came back as 199 - range 0-35. I then had a GP appointment on Friday to discuss my concerns about my recent blood results, of course she completely dismissed them and told me to get some more bloods done at the GP surgery so I did so. Bloods taken Monday just past so exactly 1 week after the above test. Results have come back as 270, which means my tpo antibodies have increased by over 70 in just 1 week - does anyone know what this means? Should I be concerned? The GP has kindly made me an appointment for the END OF DECEMBER 🙄🤦🏻‍♀️

In the meantime the GP I saw on Friday was concerned with the symptoms I have and said she could feel a lump in my neck when she examined me which resulted in a 2ww urgent head and neck cancer referral to the hospital! So you can imagine I'm quite worried right now, I went to that appointment expecting some medication, not a cancer referral!

Now with these rapidly rising antibodies I really am trying not to freak out, which is hard. Husband has no idea what I'm going on about when I try to explain it all so I've nobody else to talk to about it all.

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12 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Did you see my reply to you here? healthunlocked.com/thyroidu...

Antibodies are really nothing to be concerned about. They are the natural result of the slow destruction of your thyroid. They will vary in levels daily, likely several times a day and theres very little you can do about that. Antibodies don't cause symptoms.

Is the lump in your neck in the area of your thyroid?

GP's have what they call red flag symptoms and maybe you just triggered a red flag and your GP referred you to be cautious. The likelyhood that everything is fine is high and at least you won't have long to wait to find out.

If it helps I got referred on a 2 week pathway for voice changes. My GP said that the ENT people have very long wait lists and they sometimes use the urgent referral to actually get people seen. I was fine btw. :)

Mummybear0213 profile image
Mummybear0213 in reply to Jaydee1507

Thanks for the reminder, i really wasn't worried until I had the referral made to be honest, now I'm questioning everything.

I've had issues with swallowing and feeling like something is blocking my airways for a while, she did put on the referral form 'thyroid lump' so yes I'm guessing it's inflamed or something 🤷🏻‍♀️

Hopefully I'll have some answers in the next week.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Mummybear0213

You have plenty to be doing vitamin wise which will really help how you feel. Time to be buying supplements.

Sparklingsunshine profile image
Sparklingsunshine in reply to Mummybear0213

Before I got diagnosed in 2020 for hypo I happened to mention I had some difficulties with swallowing and immediately got referred on the cancer pathway for more tests. At my look of horror the GP explained that otherwise it could take months to get scans and possibly an endoscopy.

It didnt mean they thought it was cancer. Fortunately my scans were clear, my swallowing issue resolved itself and I didnt need an endoscopy. Its a sad reflection of the state of the NHS that they either have to fast track you via the cancer pathway or you will stagnate at the back of the queue for many months.

Lottyplum profile image
Lottyplum in reply to Mummybear0213

You have everything I went through many years ago+difficulty in swallowing+sometimes (esp when stressed) found difficulty breathing - it was the goitre+Hashimotos that was finally diagnosed. Please don't worry as I'm sure it's just A thyroid issue+nothing more.

helvella profile image
helvellaAdministratorThyroid UK

Antibody tests tend to be poorly standardised.

A result from one lab might be very different to another lab.

If the test wasn't at the same Exeter lab, I don't think you can really make anything of that difference.

And, so far as we know, antibodies can rise and fall over time - even fairly short periods. I'm not aware of detailed research into antibody test results which means we should be concerned about this sort of change.

Indeed, at the start of this forum, few members ever had repeated antibody tests. The view was rather that such tests had their place in determining the cause of a person's thyroid issues but not really much use in terms of managing their disorder.

While more members have had tests repeated, there still isn't much clarity about their interpretation. Certainly not enough to be anxious about changes that are not that great.

Wishing you well at your hospital appointment.

SlowDragon profile image
SlowDragonAdministrator

Previous post

healthunlocked.com/thyroidu...

Shows

Ferritin is deficient

Folate is deficient

B12 too low

GP MUST do full iron panel test for anaemia including ferritin

Have they?

Folate is deficient

GP MUST prescribe Folic acid

B12 is too low

ESSENTIAL to test vitamin D

If GP won’t test yourself here

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

vitamin level are terrible BECAUSE you have Hashimoto’s

GP should be doing coeliac blood test too

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.

SlowDragon profile image
SlowDragonAdministrator

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

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 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

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Any obvious reason for anaemia

Are you vegetarian or vegan

Heavy periods?

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron

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...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Posts discussing Three Arrows as very effective supplement

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Iron patches

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

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

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Ferritin range on Medichecks

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

Mummybear0213 profile image
Mummybear0213 in reply to SlowDragon

Thank you so much for this SD, plenty for me to read, I really appreciate it 😊

I have had very heavy, irregular periods since I had the baby. When I had the massive hemorrhage during the op they attempted an iron infusion afterwards but I had a reaction so they said I'll probably become anaemic a few months later.

SlowDragon profile image
SlowDragonAdministrator in reply to Mummybear0213

Definitely get GP to do FULL iron panel

Poniesrfun profile image
Poniesrfun

Hi Mummybear ~ I would appreciate the urgent referral as I presume they will do an ultrasound and, if it looks like it's needed, an FNA (fine needle biopsy). If it is something, you would want to have it taken care of sooner rather than later. Nodules (bumps) aren't necessarily cancer (and almost everyone has some but never know it) but even if benign they can cause problems if getting too large (like your swallowing issue). If it does turn out to be something - there's a lot of us out here who have gone through it and are trundling along just fine for the most part. Thyroid cancer is a big deal (despite what a lot of doctors may tell you) but it's not the end of the world, either. Plus you get tons of great advice about all the "other" med issues and more here from the admins.

Patti in AZ

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