negative antibodies: Hi. I’m wondering what you... - Thyroid UK

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negative antibodies

11 hours ago•4 Replies

Hi. I’m wondering what you should test or look out for if you have negative antibodies for hypothyroid whilst having a higher TSH number? I get my bloods done every 4 months. The TSH is high, but not high enough to be medicated for (in the UK). I get my bloods done by the nurse and there’s no chat with the doc about the results. I get the bloods done again and same follow up. I guess till the TSH is high enough to treat, they don’t need to speak to me. I feel I’m declining every month. So tired, it takes me a few days to get round to just composing a post on the forum. Some days I’m completely inactive. I’m not depressed. Just so sleepy, spaced and heavy. There’s lots of things I’m enthusiastic to do! I have a list of jobs around the house and garden I am excited to get stuck into - when I have the energy for it. But those spells seem to be more and more infrequent. It was myself who requested the antibody test- just in case the fatigue is due to something else. I started HRT after the results came back, just in case it was that instead. Again, it was me who suggested to the doc this might be worth a go. So far, it’s not improved the lethargy. Just 5yrs ago, I was doing marathon runs, hiking every weekend, gym week days. Now, I’m lying on the couch. It’s not that I don’t want to do those things i used to- I physically can’t! Do I just continue to lie about? Is this me now?

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Meash

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greygoose11 hours ago

I presume you mean TPO antibodies? You don't test TPOab to see if you're hypo, you test them to see if you have autoimmune thyroiditis - aka Hashi's. If they are high, you do have Hashi's but doesn't automatically mean you are hypo. It means that your thyroid is under attack from your immune system, your thyroid is being slowly destroyed, and you will eventually become hypo.

The TSH could tell you if you're hypo but doesn't always because it's not always a reliable indicator of thyroid status. Which is why, in an ideal world where doctors knew something about thyroid, your FT3 and FT4 would be tested at the same time to double check. In this world, doctors know nothing about thyroid and think that the TSH has to be over 10 before you become hypo! In reality, the TSH of someone without any thyroid problem is around 1; never over 2 and you are hypo when it reaches 3. So, if your TSH is still around 6, as it was in your last post, you are pretty hypo. And, as I said to you, don't be taken in by talk of 'subclinical' hypo. Either you are or you aren't, and you are. So, you need to get a bit forceful with your doctor about starting levo.

So, as you see, there is no direct link between TSH and TPO antibodies. The show different things. But, there are two Hashi's antibodies - TPO and Tg - and, in an ideal world (again!) both would be tested. But, the aim of the NHS, as I see it, is to diagnose as few people as possible, so they don't test it. Have you ever done a full thyroid panel privately? If not, I think it's time you did.

Meash in reply to greygoose10 hours ago

Thanks for the reply grey goose. You correctly interpreted my mistake. TPO antibodies were tested. The secretary said they were negative which sounded like a full stop end of the enquiry. I thought that meant there was another reason to discover why my TSH was high. What does the private thyroid panel do that the nhs won’t cover?

greygoose in reply to Meash10 hours ago

A private panel would include:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

So, that's a lot more than the average NHS test.

Do you have the exact numbers for the TPO antibody test? Result and range?

Obviously, if your TPOab test was negative, the reason for your high TSH isn't autoimmune. But there are many, many other causes of hypothyroidism. The chances of you ever finding out what has caused yours are pretty slim, nor do doctors ever look for it, nor does it really matter. Basically, your TSH is high because your thyroid hormone levels are low. Why your thyroid hormone levels are low is anybody's guess. And as I said, it doesn't really matter because there's nothing you can do about it. The thing is to get onto thyroid hormone replacement (levo) as soon as possible.