Question about anti TPO antibodies once you're on levo

[momo33]

Hello,

I had my 6 monthly blood test with my doctor today and he said that he's going to do a number of tests including antihyroid antibodies. I am currently on 100mcg of levo and my TSH was 1.2 last time I had a blood test. I have not had anti TPO tested for over a year and the results were 237.

I am due to go back for my results in 2 weeks and I'm suddenly really worried now that my thyroid antibodies have improved. Is this possible? And if the number of antibodies has lowered, will my doctor be skeptical about my hashimotos and take me off my medication? Does anti TPO improve once you're on levo anyway? My life has changed for the better since I have been on levo and I don't want to go back to feeling like the living dead again. So scared and worried! If anyone can help with my questions, I'd really appreciate it.

[puncturedbicycle]

Interesting that doc wants to know ABs as usually they are only used to diagnose. Has there been any discussion about what will be achieved by re-testing? Just curious, it seems unusual.

If your ABs were high earlier and you're on 100 levo (and tsh is over 1) it seems impossible to dispute your dx. If docs reevaluated dx after treatment they might as well say 'Oh look at that your tsh has magically fallen/t4 has risen so you won't be needing any more of that levo then' etc.

They say ABs can respond to optimal treatment, gf diet etc but mine never did. They are still as high as ever.

I'd be more concerned that they might try to reduce your meds which, as your tsh is not anywhere near the bottom of the range and you're feeling better, I would resist if I were you.

Hope that helps.

[momo33 in reply to puncturedbicycle]

Hi puncturedbicycle, thanks for your reply. Did your doctor test your antibodies after you were on levo? I don't know what he wants to achieve to be honest. I think he is just trying to be helpful, but as he knows little about thyroid, I am concerned tha he will say that the are lower and think that I am 'cured'. I worked so hard to get onto levo on the first place as the endicronologist I saw said that she doesn't treat hashi's until the patient's TSH is over 10!

It makes me uneasy as to why he is doing it. maybe i'm just worrying too much. Hopefully they are as high as ever!

[puncturedbicycle in reply to momo33]

Why not just ask? It may be ignorance on his part (and the lab may refuse to do it as they regard it as a diagnostic test).

Are you in the UK? I had mine retested in the US by a functional doc. She was interested in reducing the inflammation response but that is not usual.

Is it possible your doc is testing antibodies for something different due to suspicions you may have another autoimmune disease? Coeliac, RA or something?

[momo33 in reply to puncturedbicycle]

I am in the UK and he did say that the lab might not do it. I should have said it wasn't necessary but am kind of inclined to jump at every thyroid test he offers me as my previous doctor's surgery refused to offer any helpful tests! It was only when I got home that I thought about the implications of the results. Feel reall stupid now for agreeing...

I don't think he has suspicions about another autoimmune disease. I think he would have told me if he had- he usually discusses things with me. My follow up appointment is in 3 weeks.. feels like a long time to worry!

[puncturedbicycle in reply to momo33]

While it isn't necessary it can be helpful to know where you stand w inflammation (it may influence how you look after yourself). I would never suggest turning down the offer of a test that isn't the standard (inadequate) tsh/t4 and you mustn't feel 'stupid' for agreeing.

I do hope I haven't said something that has worried you. I think we may have our wires crossed. Why are you worried? If you have Hashi's you have it and it needs treating. It doesn't matter if your ABs go up and down as they do from time to time, you still have Hashi's. If he doesn't understand this you can talk to him about it but it would be very unusual (and wrong) for someone to be taken off their meds because of ABs. Your tsh of over 1 shows you need your levo. Think what it would be if you were not on meds.

Good luck, I hope it gets done and you find out more! Your doc sounds like one of the good ones.

[momo33 in reply to puncturedbicycle]

Thanks for your help puncturedbicycle!

[puncturedbicycle in reply to momo33]