Do TPO antibodies cause symptoms??

[Paolatello]

Please can someone confirm either way?? I have elevated TPO antibodies but am currently still just within normal range for TSH and free T's. I have loads of symptoms but both my GP and my endo says antibodies are irrelevant and categorically do not cause symptoms. Am I going crazy??

[helvella Administrator Thyroid UK]

It is difficult to be certain.

When the autoimmune attack on the thyroid is at its worst, then you'd expect the antibodies to be at their highest. But it is very difficult to know how much of the feeling ill is due to the antibodies themselves - and how much to other factors including the autoimmune attack.

Interesting to speculate what would happen if someone managed to inject just antibodies into someone who was healthy. Would they then feel ill? Or not?

[Paolatello in reply to helvella]

It certainly would be! So the fact that years ago I was hyperthyroid, had a nodule of 3cm and a goitre with TPO antibodies of 1140, that all settled down back to normal except obviously the nodule was still there, and now 5 years on my symptoms are back and my antibodies are now elevated again but only at 77 with a range of less than 35. How can I have symptoms when all my other bloods are in range??

[Clutter in reply to helvella]

Helvella, My own experience made me conclude that autoimmune disease when euthyroid does cause symptoms, and I have read articles which support this (not bookmarked so I can't link). Antibodies are a response to autoimmune attacks so it could be either the autoimmune attack, or the antibodies, causing symptoms.

Symptoms were initially very hyper and had been for months prior to seeing GP who suspected Graves as mother and sister had it. TSH, FT4 & FT3 were unequivocally euthyroid with TPOab 230 (>100 positive). GPs comment re antibodies was "Something's been going on".

Symptoms began spiralling between hyper and hypo but GP and surgeon were adamant "antibodies don't cause symptoms when euthyroid". No improvement after hemilobectomy, but after complete thyroidectomy symptoms resolved. I don't recall having TFT until after thyroidectomy but I suppose they were done pre-op although I don't have results.

[helvella Administrator Thyroid UK in reply to Clutter]

I agree - the autoimmune process does make people feel awful - but also agree that we still don't really understand the whether it is the autoimmune attack of the antibodies.

It also seems reasonable that any tests would appear to show a correlation between antibody levels and how bad people feel.

[Clutter in reply to helvella]

Helvella, knowing how ill I felt with mildly elevated TPOab, I'd hate to be one of the poor souls with TPOab in the thousands.

[hose1975 in reply to Clutter]

I can tell you that with the a TSH of 'only' 10, fT4 of 'only' 10 and the two main antibody readings of over 400,000 and 40,000 respectively I had the memory of a teaspoon, thighs like bars of iron (and just as unbending), an unerring ability to walk into any architrave (oh! the bruises), temperature that went up and down like fireworks and a complete and utter inability to hold a simple conversation of more than one word.

In a word, hell.

[Clutter in reply to hose1975]

Hose, I'd forgotten the 'clumsiness' and resulting bruises. My spatial awareness was so off that cups and plates I thought I was putting on the counter weren't quite there and crashed to the floor. I liked that dinner service

[hose1975 in reply to Clutter]

I was in my first year of university at the time and because I wasn't actually dying had to 'keep term'. This meant being bundled into a taxi to attend one lecture for one hour per week, sitting at the back and being asked 'Are you with us today?', while dribbling like an idiot.

The worst part was getting from halls to the dining room: I was at Durham and my college grounds were very, very hilly. I basically had to be dragged / carried by two very nice 6-foot chaps, who fed me tiny forkfuls of chips, and then dragged me back again up the hill. I also (vaguely) recall spending a lot of time standing in the shower room and wondering why I was there, fully clothed. And then again when I had a towel and shampoo.

Rubbish.

[Clutter in reply to hose1975]

Hose, (apologies for calling you Jose, earlier). It's frightening when you think back to how awful things were and how different it can be when you're optimally medicated.

[Hidden in reply to Clutter]

Its also frightening at how quickly we can crash .. even now ! .

[cowgirl999 in reply to hose1975]

Hi I'm experiencing some of that. I have Hashi. How did you adjust medications to deal with these symptoms? My dr of little help.

[Paolatello in reply to cowgirl999]

Hi there. Sadly I'm not yet on medication as my blood test is still within normal range! I feel bad every day. Are you medicated? What symptoms do you have?

[cowgirl999 in reply to Paolatello]

Insomnia, thirst, feeling warm, body aches, foggy thoughts and also feel my speech impacted.

Yes I am medicated. Synthroid and cytomel. Have started working out and wondering if I should decrease meds.

[Paolatello in reply to cowgirl999]

I'm sorry I just don't know as I'm not medicated yet. I hope you feel better soon though

[Hidden]

Paolatello,

I don't know if there is a way of telling if antibodies cause the symptoms but it doesn't matter because we know they indirectly cause the symptoms.

Many people who have very low thyroid antibody levels may never experience thyroid dysfunction (so no symptoms) but also many do.

Elevated levels of TPOAb may be found in a variety of thyroid diseases and other autoimmune disorders such Type 1 diabetes, pernicious anaemia and rheumatoid arthritis and all produce a variety of symptoms. Hashimoto symptoms can swing between hyper and hypo and make people feel very unwell.

If you have recent thyroid hormone test results, post complete with ranges (numbers in brackets) for members to comment.

Flower

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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal before applying any of these suggestions.

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[Clutter in reply to Hidden]

Flower007, It mattered very much to me that my doctors didn't believe symptoms were due to Hashimoto's or antibodies because bloods were euthyroid. I don't believe it was a coincidence that symptoms resolved after thyroidectomy. I think it showed medical ignorance of how autoimmune disease can impact.

[Hidden in reply to Clutter]

Clutter,

We know autoimmune disease causes symptoms.

I felt dreadful too before medicating which surpressed antibodies ( to a certain extent) and so alleviated symptoms but I still continue to feel bad from time to time as even with momentous efforts, I can't get my TPOAb's lower than 300 and don't know why?

Sorry maybe bad phrasing .. I was referring to whether the cause of the symptoms was a direct result of the high antibody count or a result of conditions caused by the high antibody count. I say it doesnt matter because symptoms are symptoms and need addressing, and I really don't know of a way to determine an exact answer to posters question.

Flower.

[Paolatello]

My results 5 years ago when I felt very ill:

TSH 0.01 (0.3-3.0)

Free T4 32 (12-22)

TPO 1140 (less than 35)

This then went back to normal with a TSH of 0.54 and TPO of 9 with the same ranges and I had no symptoms for 5 years!

Now I'm feeling awful again and my results are:

TSH 0.27 (0.3-3.0)

Free T4 17.2 (12-22)

Free T3 5.2 (3.4-6.8)

TPO 77 (less than 35)

[lastresort in reply to Paolatello]

THis proves that the signs and symptoms are what drs should go by . My TSH was 0.16 T4 16.5 tpoas less than 33. Multinodular goitre.

Diagnosis sub clinical hyperthyroidism. Nil done about it, one endo recommends RAI as carbimazole is contraindicated. No one will act on it meanwhile I swear I AM HAVING another flare up and just before Christmas as well. This as to be one of the most scary conditions out. I am having spasms, feel hot, unable to tolerate the heat. Thirsty, seating at night has stated again after going away over 128 months ago. Feeling more and more depressed and anxious by the minute. Off food again. Unable to relax. Just want to cry all the time, [panic attacks plus,plus. Eyes feel cold and damp .

Floaters present in the right eye again.

[Paolatello]

Thank you so much! Those websites are very helpful! It's nice to have some support as at the moment this is really affecting my life. Partly because I feel rubbish and partly because I'm so worried that I've got something really serious wrong with me that no one has realised yet. All this worry because the doctors are adamant that none of these symptoms could be caused by my thyroid as my bloods are within range and according to them then antibodies do not cause symptoms.

[lastresort in reply to Paolatello]

I am concerned about the standards of care in endocrinology in the UK. are u in the UK may I ask?

[Paolatello in reply to lastresort]

I am in the UK yes. I am also concerned! I was diagnosed with hyperthyroidism 6 years ago with a TSH of 0.01 and free T4 of 32 plus TPO antibodies of 1140. I also have a noticeable goitre and a 3cm nodule. It went in to remission and has now flared up again but the doctors are ignoring me and saying that because I am still euthyroid I cannot be having thyroid symptoms and even though my antibodies are out of range again apparently that won't cause symptoms! I am feeling horrible and no one is helping. The endo said to me "you can have your thyroid removed but that is because of the nodule. Your symptoms are not thyroid related and what will you do after the operation when you still feeli the same?!" She was so nasty to me - it's insane as I was actually diagnosed years ago with antibodies so I have an autoimmune disease which doesn't go away. How can she think this is "just anxiety"?? Also my father and brother have thyroid issues!

[lastresort in reply to Paolatello]

Hi Paoletello

Sounds like a re run of what happened to me. It is very scary as the signs and symptoms are so bizarre.

Mind my asking exactly where in the UK u are. Roughly I mean. Is there a Private messaging service on Health Unlocked?

Cindy

[Paolatello in reply to lastresort]

I am based in the south east near Heathrow

[Didnothear]

I was very poorly around 25years ago, ridiculously tired, joint trouble, hair falling out and depressed. My doctor tested for thyriod problems, it came back ok. Was getting worse by the day! He then did an antibodies test and they came back at over 3000. He laughed and said, no wonder you were feeling tired. I was given thyroxine, and recovered and have been well up until last year, when those very same symptoms returned mildly, so quickly went to the doctors (different one) I noticed in a blood test that my antibodies were 980. He ignored my concerns. I became very ill again, and have had to go to private endo to get my meds changed. I'm better now, but it has been hard going. Antibodies matter very much to me!!!

[Paolatello]

I feel that they are important too! When you noticed recently that your antibodies were once again high, did your bloods also come back within normal ranges?

[humanbean in reply to Paolatello]

Paolatello, if you reply to a particular post, please use the Reply button immediately below the post you are replying to. If you do that then the person who is being replied to gets alerted that they have a reply.

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[Paolatello in reply to humanbean]

Will do! Sorry

[Paolatello]

My results 5 years ago when I felt very ill:

TSH 0.01 (0.3-3.0)

Free T4 32 (12-22)

TPO 1140 (less than 35)

This then went back to normal with a TSH of 0.54 and TPO of 9 with the same ranges and I had no symptoms for 5 years!

Now I'm feeling awful again and my results are:

TSH 0.27 (0.3-3.0)

Free T4 17.2 (12-22)

Free T3 5.2 (3.4-6.8)

TPO 77 (less than 35)

With these results why am I feeling so ill??

[meli06jags]

How are you feeling now? What were your symptoms?