TPO antibodies: I have elevated TPO antibodies... - Thyroid UK

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TPO antibodies

Paolatello profile image
19 Replies

I have elevated TPO antibodies and a swollen thyroid but my bloods are still within range. I had an episode of hyperthyroidism roughly 5 years ago then all went back to normal except the antibodies.

Latest blood test:

TSH is 0.27 (range 0.3-3.0)

Free T4 is 15 (range 12-22)

Free T3 is 5 (range 3.8-6.0)

TPO is 77 (range less than 50)

I now have symptoms again but the doctor says it's not thyroid as antibodies alone do not cause symptoms.

Is this true?

Is my T3 and T4 ok or too low?

Please help!

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Paolatello profile image
Paolatello
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19 Replies
Paolatello profile image
Paolatello

I actually feel like crying hearing you say that because at times I feel like I'm going crazy!! I've never suffered with anxiety before this and I'm 32. Now I have on off anxiety throughout the month and it's worse during my period so people keep saying its PMS (which I also have never suffered from) or anxiety disorder! I don't feel anxious in my brain I just feel physically anxious.

I have palpitations, internal trembling, pain in fingers, tinnitus at night, frequent waking during the night, unable to gain weight inspite eating like a horse, occasional night sweats and numbness in my hand during sleep.

I have a goitre and antibodies but doctor says its anxiety or PMS.

I had a second biopsy on my thyroid nodule today and the doctor said there was a high level of blood flow to the nodule - it's 3cm so quite big!

Still my doctor and my endo says my thyroid is fine!

Paolatello profile image
Paolatello

I thought that by my THyroid Stimulating antibodies (which I think are for Graves) were 0.3 with a range of 0.00 - 0.90 as normal so it can't be Graves surely? this is why I'm confused as I'm low TSH at 0.27 and symptoms of hyperthyroid but my antibodies are elevated for hashimotos which is hypothyroid isn't it?

SmallBlueThing profile image
SmallBlueThing in reply to Paolatello

With autoimmune thyroiditis it's possible to alternate between hyperthyroid and hypothyroid.

From the Wikipedia entry at en.wikipedia.org/wiki/Anti-...

"Anti-TPO antibodies are the most common anti-thyroid autoantibody, present in approximately 90% of Hashimoto's thyroiditis, 75% of Graves' disease and 10-20% of nodular goitre or thyroid carcinoma. Also, 10-15% of normal individuals can have high level anti-TPO antibody titres."

Paolatello profile image
Paolatello in reply to SmallBlueThing

Thank you! That's very helpful. But as I have within range bloods at present do I definitely have autoimmune thyroiditis just based currently on slightly high antibodies? And can these antibodies cause me all these symptoms? Also is it normal from r thyroid symptoms to worsen during a woman's period?

greygoose profile image
greygoose in reply to Paolatello

Autoimmunity has nothing to do with the levels of your thyroid hormones. If your antibodies are above range, then you do have autoimmune thyroiditis. They only tested the TPOab, it's perfectly possible that your TgAB is very high (that's how it was for me), but they won't test it - possibly because they wouldn't know what to do about it if it were high!

Have you tried going gluten-free?

Paolatello profile image
Paolatello

I'm starting to doubt myself and wondering whether at 32 I have just developed anxiety. Everyone keeps saying my thyroid is currently fine. Are TPO antibodies of 77 enough to confirm hashis? Roughly 5 years ago my antibodies were a shocking 1140 so they've improved a lot!!

greygoose profile image
greygoose in reply to Paolatello

They are highest just after an attack. Then they calm down. But they never go away. If you had a positive result once then you have Hashi's, and there's no arguing that point.

Anxiety is not a disease, it's a symptom. So, what is causing your anxiety? That's the question your doctor should be asking himself. More than likely, it's because you have Hashi's.

You have to remember that your doctor is just guessing. he doesn't really know anything about it, and he's been given false information during his time at med school; and he's being given false information by the drug reps all the time, who want him to prescribe their drugs for your anxiety, not seek out the root cause. And he's been taught that all female patients are air-headed, hysterical hypocondriacs! So, you've got to show him that you're not! And calmy, and cooly insist that he takes you seriously.

Take care.

Paolatello,

You have Hashimotos as indicated by your previous thyroid antibody blood test showing TPO - 1150 HIGH (range less than 35).

Once developed, Hashimotos is with you for life and all your symptoms are classic of the hypo//hyper swings that sufferers find themselves on before the disease is managed. Doctors fail to recognise the destruction and unwell feelings that Hashimotos can cause and some will almost ignore its presence.

Your antibody level has come down which is good but your T3 & T4 are a little low. TSH is fine.....although TSH fluctuates I don't understand why it is not higher considering how unwell you feel......maybe others will comment...? ?

Never doubt yourself Paolatello...only you know how you feel.

Until medicated on optimal thyroid meds I felt crazy too. ...and as Clutter has previously explained Hashimotos has a definite negative impact on a woman's cycle as explained in the link below.

hashimotoshealing.com/hashi...

Nutrients are vital and below is a link explaining their importance.

The books I previously recommended will explain all aspects of Hashimtos and thyroid issues. If you can understand what is happening and why...it may make it a little easier to bear.

Hope you feel better soon.

Flower

This link below explains the importance of vitamins and where they may be obtained.

This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link.

thyroiduk.org.uk/tuk/treatm...

Paolatello profile image
Paolatello

Thank you Flower!

I am so sick of hearing doctors tell me I have anxiety when I've never suffered with it before! I don't even feel anxious or worried! Just randomly at times I get palpitations or just become very aware of my heart beating harder than normal. I have had more than one ECG and I have had them done during these symptoms and three were fine so I'm not overly concerned by my cardiac symptoms.

I'm more concerned by my nodule which is 3cm and when ultrasounded shows very good blood flow - a risk factor for cancer :-( the doctors have done two biopsies but neither time they've got a result. The goitre came up when I had my first bad hashimotos attack 5 ish years ago so I assume it's hashis and not cancer but ........ Scary!

I'm having another thyroid panel done next week plus a complete blood count and diabetes and vitamin levels (B12, ferritin and folate) so I will see what that comes back with.

My T4 was 16.4 before and now it's 15, but my TSH always remains low. It's never been above 0.5

Paolatello profile image
Paolatello

Thank you Grey Goose! What I can't understand is why my TSH is always low. It's been as low as 0.01 and right now it's 0.5 but that's the highest it's ever been! If I have hashis why isn't my TSH high?

Eddie83 profile image
Eddie83

Antibodies alone DO cause symptoms. Have you done anything to try to identify what is causing the antibodies, such as testing TPOAb, withholding problem foods (e.g. gluten) for 6 months, then testing TPOAb again to see if it goes down?

Paolatello profile image
Paolatello

No I haven't. That's a good idea though! I have another blood test next week so I will see what that says and then attempt gluten free

padster profile image
padster

Hello all, i thought i would share one of the few useful conversations i had today with a health professional: i took my teenage daughter to a psychiatrist appt today as she is suffering with extreme anxiety and as he was going thru family medical history etc he asked if i had had my daughters thyroid tested, i said no because altho i am aware of the connection with thryoid disease, i explained that my journey to getting diagnosed (i have tp antibodies in the thousands) is a difficult one and i suspect that trying to get the doctor to test her would be equally difficult! He was frustrated by that and is going to send me out a form so that i can have her blood drawn in order to test, both he and the pschyologist who was also in the room were insistent that there are probably alot of people walking around the streets that are suffering unneccessarily from anxiety which could possibly be treated successfully if their thyroid disease was!!

Paolatello profile image
Paolatello

Wow! Thank you so much for that reply padster! It makes me feel less crazy! I don't know whether I'm correct but I assume that if what I have in Generalised Anxiety Disorder then I would be anxious most of the time? Well I'm not!

When I'm anxious it is out of the blue at random times like maybe two days at a time and it hits me hard, but it is a physical anxiety not a mental one and I get all the other symptoms along with it like palpitations, insomnia, night sweats, numbness during sleep, internal vibrating and increased frequency of bowel movements. This will go on for a couple of days and then wear off and I'll be ok again for a while.

Ive also developed what I think is carpal tunnel syndrome which comes and goes.

Surely if this was anxiety I'd have symptoms a lot of the time?

padster profile image
padster

I don't know how the anxiety would manifest if it was thyroid related but all I can say is I have had similar symptoms to you at random times which I firmly believe is triggered by either period or thyroid as I haven't had any stressful situation which would've triggered it, but on other hand my daughter has ongoing anxiety which is more mentally formed but doc recommended she was tested so perhaps either state can be triggered by thyroid ill health !

Nadpa profile image
Nadpa

I'm exactly like you. High antibodies and (relatively) normal thyroid results. T3 slightly raised though. I recently had a breakdown with severe anxiety. I thought it was stress related. I have a demanding job and live a hectic life and have suffered trauma as a child. I've had these breakdowns three times before. I always thought it was mental until an endo checked me thoroughly in relation to not getting pregnant. I've moved around a lot so have had different doctors and have previously been told that my thyroids are a little off and I need to get retested regularly. However I didn't think it had anything to do with my anxiety. Which unfortunately also goes to my head but starts off being physical only. I'm now on antidepressants to tame the anxiety. Which they do. But I can still get periods with it. Sorry. Don't wanna ramble on about myself. Just trying to draw an outline. Anyway the endo also discovered that I was b12 deficient due to what used to be called pernicious aneamia - another autoimmune condition. When you have one - like hashis which we both have - they rarely come alone. B12 deficiency causes very similar symptoms to a thyroid problem. B12 is what keep the nervous system healthy. And it can affect you both psychologically as well as physically. Like the pins and needles and numbness you talk about.

So I would ask your doctor to check b12, as well as intrinsic factor and homocysteine.

You can be b12 deficient and still be within the ranges, but a high homocysteine result would indicate a deficiency. Intrinsic factor checks you for an autoimmune cause in case you are b12 deficient. The treatment is b12 injections every three months for the rest of your life.

Like you I'm confused as to what these high antibodies actually do. Some say you do get symptoms from them alone, others say you don't. And the general consensus from doctors seems to be to not treat the thyroid as it's unpredictable if it goes hyper or hypo. (Until the thyroid is eventually completely broken and it then is hypo)

Good luck with it all!

Nadpa profile image
Nadpa

Oh and I forgot to say that my THS is 0.01. So that's also out of range. Also I like you worsen significantly 1-2 weeks coming up to my period and the first day or so of my period.

Paolatello profile image
Paolatello in reply to Nadpa

Nadpa you sound exactly like me, that's why I was starting to believe I had just developed PMS!

Daisy0 profile image
Daisy0

Hi old post but I am hoping someone can help or be helped by this.

I have noticed ppl saying they get worse before their periods and I have PMDD (pls google, basically body is allergic to its own hormones from ovulation to period but can go all month making you very sick physically, mentally and emotionally). I also have 2 thyroid nodules with cervical lymph node "masses". I am being tested for MTHFR as I cannot process folic acid and I believe also the true form folate. My test results for folate and homocysteine are in and I have been alerted there is a problem. TPO levels are 56 and Globulin one is normal levels along with all other blood work. I'm wondering is there a link btwn MTHFR, pmdd, thyroid tpo levels/nodules and perhaps an unidentified different form of graves??? I also cannot gain weight, I have been the same weight since 16. I believe a man could easily suffer from pmdd type symptoms so I really think this is important to explore.

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