Gp says TPO antibodies can never go down! - Thyroid UK

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Gp says TPO antibodies can never go down!

mcdermott
mcdermott
15 Replies

Hi I’ve been on here since September, hope you can track me down. Just seen my GP and asked for TPOab test with TFT’s (lab will only do TSH) as stupid endo wouldn’t do them. She told me that only need one test as they will never come down! I’m sure that’s not true, and I told her so, but she repeated what she has said before, that she can only follow the guidelines. I persuaded her to increase to 50 mcg as she only agreed to go from 25 to 37.5 (breaking them in half) last time, but she reiterated the same as before.......If you have heart failure it will be on my shoulders!! I tell her I know she has her hands tied and I mention Thyroid UK being recommended by NHS choices. I try not to worry about heart failure, but when it’s said, it’s hard. I started on 50 mcg in 2010 after seeing a private doctor, who said my GP could have done that. I had felt existing palpitations slightly more and mentioned it and she dropped me down to 25 then half then stopped it 2 years ago. I am having major surgery for a tumour on my spine in less than 4 weeks so obviously don’t want anything to go wrong! My TPO ab last October were 1300. Endo last month put Hashis in report, but I e never had this diagnosis. GP must have put it down years ago and not said. It’s what I suspected back then, but not told. I queried the antibodies etc and she said no treatment while TSH in range, mine was 5.5 last Feb, it’s lower now, but that’s hashis isn’t it? I have all the usual info from here and have been gluten free since November. Thanks for your help. 😊

15 Replies
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Clutter

McDermott,

Antibodies fluctuate and will be higher after an autoimmune attack and then subside until the next attack and they do sometimes come down. NHS doesn't monitor TPO once a positive result has been given. If you want to monitor your response to dietary changes you will have to order your own TPO test.

TPO 1300 is confirmation of Hashimoto's.

Your GP is being very alarmist about heart failure. Heart failure can also caused by under medication.

Post your most recent thyroid results and ranges when you get them. If TSH is high surgery may be delayed.

2 likes
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mcdermott
mcdermott
in reply to Clutter

They do need to come down though don’t they? They were 1300 in 2010

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Clutter
Clutter
in reply to mcdermott

McDermott,

I don't know because I don't know whether the amount of antibodies correlates to symptoms.

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Annealise
Annealise
in reply to Clutter

Can they go up - I had investigation tests for Hashi's years ago when I had all the symptoms and both were normal.

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Clutter
Clutter
in reply to Annealise

Annealise,

Yes, they can. If your results were close to top of range it may be worth retesting. NHS probably won't retest because a confirmed diagnosis of Hashimoto's doesn't affect the treatment you get for hypothyroidism.

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jimh111

TPO antibody levels can fluctuate a bit and usually go down a few years after the thyroid has been destroyed or surgically removed.

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humanbean

You are probably at greater risk of having heart failure or other cardiac problems if your thyroid hormone levels are too low :

circ.ahajournals.org/conten...

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

3 likes
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SlowDragon
SlowDragonAdministrator

Very very many Hashimoto's patients find antibodies very slowly decrease the longer they are strictly gluten free (and/or dairy free if they react to that instead, or as well)

Not something the NHS is likely to learn, as they refuse to do repeat antibodies tests

5 likes
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mcdermott

Thanks. I haven’t noticed much difference with gluten free really.

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Treepie
Treepie
in reply to mcdermott

Does not work for all with Hashi.I have not found it necessary .

1 like
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mcdermott
mcdermott
in reply to Treepie

Thank you

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mcdermott

Thanks everyone!

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fortunata

Mine were >1000 in 2010. After getting off Levothyroxine and being prescribed Liothyronine and making sure I have a healthy diet with thyroid supporting supplements, my antib’s are now >600. I’m pleased with that.

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jimh111
jimh111
in reply to fortunata

They do die down over time, especially once there's little or no thyroid left to attack. How long antibodies hang around varies, this is why we need booster jabs for vaccines, because our antibody counts have dropped.

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Fruitandnutcase

I’ve been totally GF for just over three years and since then I have used BH Thyroid 11 several times a year and I have watched my thyroid antibodies steadily decrease - so they can come down. My CRP has reduced too in that time. I’m not willing to try eating gluten again to see if it increases them though.

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