My TPO antibody levels have been consistently high around 500 since 2016, tested annually. My TSH and T4 levels are within range requiring no treatment; TSH at 2.51 and T4 15.7. They have also been at similar levels since 2016 tested annually. My GP states that the antibodies cannot be attacking my thyroid or the TSH and T4 levels would not be consistently within range. Is this a thing? Do I have Hashimotos? Cannot get anywhere with this - I am taking iron now as my iron levels were a little low, I also have 3 or 4 brazil nuts every day as many years ago I think someone told me it was a good idea for the selenium. Other than that my GP says I should just "be aware of the antibodies" Can you have these antibodies without them attacking your thyroid? I am finding this so frustrating. The reason I started digging into this and not doing nothing as the GP has always told me to do is because I have suffered for many years from Idiopathic Ulticera. Basically my face swells up and no one knows why. I can go many months without an attack but when it comes back it is very debilitating, my eyes can almost shut they swell up so badly. All the GP has ever suggested for this is Fexofenadine which I take daily, and a steroid if the Fexofenadine doesn't damp it down. I think these attacks may be connected to these antibodies. Does anyone have any comment to make on that please? I have no visible goitre but the GP has now referred me for an ultra sound scan to be sure. Is this useful? Would you expect a GP to do anymore? I accept I need to look at private blood testing and will look at this going forward, the numbers above were from an NHS test last month. TIA.
High TPO antibodies.: My TPO antibody levels... - Thyroid UK
High TPO antibodies.
The high antibodies are saying that you have Autoimmune Thyroiditis, no doubt about that.
But, your doctor is right when he says the antibodies can't be attacking your thyroid, because that's not what they do. TPO antibodies are the immune system's Mrs Mop. They come along in force during or after an immune system attack on the thyroid to clean up the mess left in the blood. They do not attack anything, and I really don't think they are responsible for your Idiopathic Ulticera.
Your TSH is telling us that your thyroid is struggling. You're not yet hypo, but probably will be soon. Your FT4 looks as if it might be about mid-range - don't know for sure because you haven't given the range - but it's taking an abnormal amount of stimulation from the TSH to get it there.
But, neither TSH nor FT4 cause symptoms - well, T4 might cause some - it's T3 that causes symptoms when it's too high or too low. And they rarely test that! Your FT3 is probably too low if you're having symptoms of hypo.
Is an ultrasound useful? Yes. You say you have no goitre but high antibodies, so what you have is Ord's, rather than Hashi's - same thing but without the goitre. An ultrasound will show if any damage has yet been done by your immune system attacking your thyroid, and will make your GP look, a little bit silly! 
Thank you for your reply. The reference range given for FT4 was 11-21.2 and mine was 15.7. The reference given for TSH was 0.27 - 4.2 and mine was 2.51. My GP's firm view is both are bang in the middle of the reference range, although any research I have done, backed up by what you say here tells me 2.51 is too high for the TSH. Surely the reference is set wrong then? If you can have a result bang in the middle of the reference range which everyone (apart from the GP) tells me means my thyroid is struggling, what is the point of the reference range?
Also apologies if I phrased wrongly by saying my antibodies were attacking my thyroid, what I meant to say my GP means because my numbers are stable/similar since 2016, nothing is attacking my thyroid (TPO antibodies around the 500 mark since 2016)
More generally, I am really struggling to understand that the only option I have is wait until my numbers are bad enough to need medication. Is there nothing preventative that can be done? Will my immune system eventually destroy my thyriod? Would it slow the progress if I started to take the medication before the numbers showed I needed it?
Thank you for your help, Fiona
OK, well, your FT4 is 'bang in the middle', yes. And that could be seen as 'good'. But, we cannot take one result in isolation, we have to consider the three results in conjunction with one another: TSH, FT4, FT3 - and they don't even test the FT3! So, that's a pretty good indication of how ignorant they are about the whole thing.
TSH bang in the middle is unconditionally bad. A euthyroid (i.e. no thyroid problems) TSH is around 1, never over 2, and when it reaches 3 you are hypo - and in some countries treatment would start at that point. However, the NHS, in all its wisdom, has decreed that treatment cannot start until the TSH goes over 10! So, you are right, what is the point of ranges?!? Admittedly ranges are only a rough guide but doctors just ignore them when it suits them. You might find this article of interest:
The normal range: it is not normal and it is not a range
ncbi.nlm.nih.gov/pmc/articl...
But doctors are notoriously bad at interpreting blood test results, anyway, it's just one more thing they don't learn about in med school. The other things are nutrients and hormones!
my GP means because my numbers are stable/similar since 2016, nothing is attacking my thyroid
Well, something is, or your TSH wouldn't be in the middle of the range! lol But, your GP just doesn't understand how all this works. They spend about one afternoon out of seven years in med school, looking at the endocrine system. So, you can imagine the thyroid doesn''t get much of a look-in, and antibodies are rarely mentioned, from what I can gather.
More generally, I am really struggling to understand that the only option I have is wait until my numbers are bad enough to need medication.
The 'medication' shouldn't really be called 'medication', it's actually thyroid hormone replacement, replacing what your thyroid can no-longer make enough of. But, so far, your thyroid is hanging in there, and managing to make enough thyroid hormone for the results to look 'normal', so they consider that you don't need thyroid hormone replacement.
THR is usually levo, to begin with, which is T4. And it doesn't do anything except replace the missing T4. It doesn't cure anything. It doesn't make your thyroid work better, or calm the immune system or slow down the process of destruction. And, at this stage in medical knowledge, there is nothing that can be done to calm the immune system - although a lot of people have a lot of theories, I've never seen one that gave convincing results. The disease just has to take its course, and eventually, the thyroid will be destroyed, and there's nothing you can do about it I'm afraid.
But, in any case, once you start thyroid hormone replacement, it will reduce the TSH and thereby, effectively, put the thyroid to sleep. So, it won't be working any more, anyway. You will be living on exogenous hormone just as if the thyroid were already dead. I know that sounds hopeless, but people can live perfectly well on exogenous hormone and have a normal life.
There are articles, podcasts and videos on how to lower your thyroid antibodies naturally.
Yes, yes, yes, of course there are. But no proof that they work. Antibodies fluctuate all the time so they might go down but who's to say they won't go up again next time the immune system launches an attack? Besides, they reduce naturally, anyway, as more and more of the thyroid is destroyed and there is less work for them to do.
And they do have a job to do, so why would you want to reduce them, anyway?
And, even if you get them down to zero somehow, you will still have Hashi's, that doesn't go away. And the immune system will still destroy your thyroid.
So based on what you say, is it a good thing that my antibodies have been consistently at 500 on annual tests since 2016? Because you seem to be saying that if they go down, it means that more of my thyroid is destroyed. If they go up, there is more for them to clear up. Mine have been consistent going neither up nor down.
I have no symptoms, I only started to look into these antibodies because it is the only thing that stands out on my bloods and I am looking for an answer to my long term idiopathic ulticera. You say you do not think the two are linked, but others on this forum have linked me articles showing there is a link.
I have read that many people just have these antibodies as part of their make up and never go on to develop symptoms. Some of these answers just seem depressingly bleak, and there is no point doing anything because the inevitable result is the total destrucition of my thyriod, whatever I do.
I don't think that anybody can answer that question. But it's probably neither good nor bad. However, yes, they do reduce in number as more and more of the thyroid is destroyed. But, who can tell. You'd have to have a blood test every day to have more concrete information on what's going on.
Lots of people think they have no symptoms but when they start to learn more about symptoms they find that they do have some but didn't relate them to thyroid. Symptoms can occur anywhere and everywhere because thyroid hormone is needed by every single cell in your body.
I could be very wrong about the idiopathic ulticera, but it will be caused by the low thyroid hormone levels, not the antibodies themselves. I'm afraid I can't find the links to read them.
I have read that many people just have these antibodies as part of their make up and never go on to develop symptoms.
Everybody has some antibodies in their blood, yes. But given that it's not the antibodies themselves that cause symptoms, they wouldn't develop them until enough of the thyroid has been destroyed to cause symptoms. And that can take years. It doesn't happen over-night. But what is important is not just having them but the amount you have. That's what ranges are for: in-range is negative and over-range is positive. And if it's positive you have autoimmune thyroiditis.
Look, I'm sorry if you don't like my answers, I'll try not to give you anymore. But I believe in being frank and honest as I see the truth, given my experience and the length of time I've been studying all this. No, there is nothing you can do, except replace the missing hormones, and yes, in the end, your thyroid will be destroyed. If there were something we can do, don't you think we'd all be doing it and all be cured?
I'll shut up now, and won't depress you anymore. Sorry, but it's not me that invented Hashi's!
Didn't mean to offend and apologies if I did. Please do answer me going forward if you want to and thanks for trying to help.
What's the point in replying to your questions if you're just going to dismiss them? I don't mind a discussion but you seem to be telling me I've got to be wrong because you don't like the answers.
So where are the links to the connection between antibodies and idiopathic ulticera? I'm always ready to learn something new.
healthunlocked.com/thyroidu... that link works. Let me know if it doesn't and I'll copy and paste each link individually. The links were posted on this post 2 days ago by "Slow Dragon".
OK, so this one:
verywellhealth.com/thyroid-...
does talk about the connection between autoimmune diseases and hives. But for me, it's not clear if they're actually saying that TPO and/or Tg antibodies are directily responsible for the hives.
The thyroid pharmacist link doesn't work, and the Mary Shomon link just repeats what is said in verywellhealth link. So, for me, there's still a question mark hanging over that. But it doesn't appear to be something the TPO and Tg antibodies do directly. So, as I understand it, reducing antibodies would not lessen the reaction that causes the hives. It's caused by a Hashi's 'flare', as they call it (I prefer to call it a Hashi's 'hyper' swing because there's less confusion about what exactly happens). But it is not the TPO/Tg antibodies causing the 'flare'. It is the lymphocytes produced by the immune system that are attacking the thyroid. So, perhaps it's also the lymphocytes causing the hives. And you cannot do anything about the levels of those. I don't know if you can even measure them.
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
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
Highly likely to have low vitamin D….possibly others too
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.
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 and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
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...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
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
Good your GP is organising an ultrasound
Thank you for the info X
Come back with new post once you get results
Always worth trying strictly gluten free diet…..but get coeliac blood test done first
Urticaria and Hashimoto’s
thyroidpharmacist.com/artic...
palomahealth.com/learn/hash...
verywellhealth.com/thyroid-...
GP needs to do 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.
Thank you for linking these articles, very useful. x
As I understand it, selenium levels in Brazil nuts is dependent on size of the nuts and from where they are resourced. 3-4 a day could very easily cause an over dose (or maybe totally useless). I believe supplementation is recommended so that you can keep the dose within the recommended 100-200mg dose.
Fee52,
A helpful book to read is The Root Cause by Isabella Wentz who explains how high levels of thyroid antibodies are indicative of the skewed immune (auto) response and how this type of chronic inflammation can induce far reaching symptoms and other autoimmune conditions.
She explains ways of reducing the immune response which usually reduces thyroid antibody levels, accompanying symptoms and slows/stops destruction of the thyroid gland. Other interesting reads regarding chronic inflammation is anything by Datis Kharrizian.
Thank you so much for you reply, I strongly feel that in my case the two are linked, I have suffered from Ulticera for decades and all I ever get told is take Fexofenadine or if that doesn't work take a short course of steroids. I am trying to find out everything I can about what is going on on an autoimmune level, I feel inflammation and the immune system are involved and will continue to monitor my thyriod numbers and take as much care of myself as I can.
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