High antibodies

[VanessaB]

Just came back from the doctors as I have low iron and he also gave me my other results he said my thyroid antibodies were 571 under 6 is fine apparently.I take thyroxine my Tsh was 0.35 ft4 wasn't tested as Tsh was within range but he said high antibodies didn't matter it just indicated that it was hashimoto's and there was no need to try and bring them down???I thought some people were advised to follow an gluten free diet to bring them down.

[shaws Administrator]

Why would the doctor not be interested in lowering/stopping the attack of antibodies on the thyroid gland? Another obviously who really knows little about hashis and the attack on glands which can make the patient feel not too good.

It really shows how dismissive they can be nor have they any understanding of the work of thyroid hormones to keep our metabolism in tip-top shape and have no clinical symptoms.

They are only interested in the T4 and TSH. T4 being inactive and TSH taking priority when on replacement hormones when it is really only valuable when it's above range for being diagnosed, whilst ignoring clinical symptoms. Sometimes TSH doesn't rise high enough (10 in UK) and patient not very well indeed and remains undiagnosed.

[VanessaB in reply to shaws]

I have never had my thyroid treated properly and all the symptoms of underactive thyroid I have the doctors have treated them as separate entities.Low hr it's 46 when resting,I'm 42 not 102 😳Low iron,low b12,low vit d,anxiety bowel problems,tingling in the extremities,shoulder problems,sinuses all of these I just get on with but with the right thyroid treatment I feel most of these would go.But because my Tsh was suppressed the fact my ft4 was 9 is irrelevant.

[humanbean in reply to VanessaB]

Have you ever been tested for central hypothyroidism?

The thyroid produces thyroid hormones based on the TSH. TSH is produced by the pituitary. The pituitary is "told what to do" by the hypothalamus.

If any of these organs - the thyroid, the pituitary or the hypothalamus - is not working properly then you will end up with insufficient thyroid hormone.

If you have suppressed TSH with far too little Free T4 then there is something wrong with your body's TSH production, which means you have central hypothyroidism in some form.

The treatment for central hypothyroidism is the same as it is for primary hypothyroidism - you must be provided with the thyroid hormones that your body is missing. But the difference is that doctors can't monitor treatment based on the TSH - because your production of it is faulty. You must be monitored by the actual levels of thyroid hormones that you have. And that blows some doctors tiny little minds.

Incidentally, tingling in the extremeities sounds very much like a severe low B12/folate problem. If you can find another doctor who knows what they are doing that would be great. But don't leave things very long, because damage can become permanent. Even when it isn't, recovery can be long-winded.

When you go to see doctors perhaps you need to take someone with you who has an interest in you and your medical problems and isn't likely to take the doctor's side. Having a witness is always helpful.

If the worst comes to the worst you could start treating yourself. Many of us on here have been failed by the medical profession, so we help ourselves. It can be hard work and it can be expensive - but in my personal opinion it is worth doing if at all possible.

[humanbean]

There are very good reasons for attempting to reduce antibody numbers.

Antibody numbers and activity fluctuate a lot. Antibodies attack the thyroid, destroying the cells it is made up of. It may take years or even decades, but the thyroid will eventually be destroyed. People on the forum who have had scans of their thyroids after many years of Hashimoto's Thyroiditis (aka autoimmune thyroid disease) have said their thyroids appear to be wizened little lumps, often no longer capable of producing any thyroid hormone at all.

So, the first reason for trying to reduce thyroid antibodies is because it makes the thyroid last longer.

Secondly, when antibodies kill cells in the thyroid, any thyroid hormone contained within those killed cells is released into the body. These hormones can often be plentiful enough to show up in substantially altered Thyroid Function Tests. The patient concerned may end up, temporarily, severely over-dosed on thyroid meds such as Levothyroxine. If tests are done at the time of a flare-up of antibody activity then people may find themselves having their meds reduced, or removed, or in the worst case scenario, they may be told they are hyperthyroid and they need to go on thyroid suppressing drugs.

[Although it wasn't in the context of antibody activity, Dr Barry Durrant-Peatfield, in his book Your Thyroid and how to keep it healthy has written about having to intervene to prevent people having their thyroids removed because blood tests showed high Free T4 levels when the patient was obviously hypothyroid. See second Edition, page 79]

Because antibody activity, and therefore blood test results, fluctuate a lot, people find themselves frequently wrongly-dosed on their medication. They may end up on beta blockers, suffering heart issues such as tachycardia and palpitations. The mental and physical effects of fluctuating thyroid levels are hard to cope with.

So, any doctor who thinks that antibodies are unimportant is a callous idiot.

There aren't any definitive treatments for lowering antibodies, so people have to use trial and error to find what works for them.

What helps some people :

1) Taking 200mcg selenium per day.

2) Switching to a gluten-free diet. Even if the patient has been thoroughly tested and been found not to have coeliac disease, giving up gluten reduces antibody numbers a lot for some people. It has to be done ruthlessly though. Giving up gluten only occasionally is utterly pointless.

3) Switching to a diet which excludes animal milk products. The offending substance in these products could be lactose or casein or both.

4) Giving up nightshades - there are lots of lists of nightshades available on the web.

5) Dramatically reducing sugar in the diet.

I'm sure there are other dietary interventions people have tried. The important thing is to only try one intervention at a time, and if it makes no difference then put the food you've been excluding back into your diet again, otherwise the diet becomes far too restricted.

[VanessaB]

Thank you for such an indepth response I had always been too afraid to ask them to test for antibodies.Knowing that if it was Hashimotos that my immune system was likely to cause other problems.He is going to test for coeliac as well.I have so many immune conditions it's worth a try to at least try and bring them down.

[humanbean in reply to VanessaB]

If you are being tested for coeliac disease you must continue to eat gluten until after the tests have been completed. It may be helpful to know if you have a positive result and to get it recorded on your medical notes.

But if it comes back negative you should still try going 100% gluten free as an experiment. Quite a few of us have gone gluten-free despite negative testing and have got substantial benefits from it. There are conditions which are not coeliac related but giving up gluten still helps.

Personal anecdote :

I am hypothyroid. I have never had a positive thyroid antibody test. I have been given thorough testing for coeliac disease and it came back negative. I carried on eating gluten for another five years after that negative result.

In the meantime I was having problems with my balance. I had permanent low iron and ferritin. I frequently had such a bad temper it used to scare me.

When I gave up gluten my temper problem vanished within a week. Over a longer time, my balance improved (although it is still bad in the dark), and my absorption of iron improved a lot too.

I've worked out that my problems are non-coeliac gluten sensitivity/intolerance and also gluten ataxia. I know that lots of doctors don't believe either of these conditions exist, but I do, and I'm the one affected. So I do my own thing.