Thyroid antibodies raised - should I be worried?

Hello, I'm new here and looking for some support :)

I'm 60 and for the past 15 or so years have suffered with hot flushes. Recently I came to the conclusion that wheat-based products such as bread or pastry, or even breaded fish, were aggravating or causing the flushes. I don't know if it's actually the wheat or some additive, but to cut a long story short, about 2 months ago I decided to cut wheat out of my diet. As many of you probably know, this isn't the easiest thing to do! However, I bought replacement 'non-wheat and gluten' items to try out, and I have had some relief, provided wheat doesn't sneak in somewhere. I also noticed I got rid of annoying dizziness I used to get on lying down or standing up.

At around about the same time I began to drop wheat, I also notice I was having a 'thumping heart' at night or on waking up from sleep, and also a dull headache. This began to alarm me and I did wonder whether I was going down the route of thyroid problems (my mother had an overactive thyroid that went undiagnosed for years). As I am needle-phobic I decided to send off to Blue Horizon for a finger prick thyroid test. I got the results back in 2 days and whilst they said the values were in the normal range, they did flag up that my antibodies are raised, and on reading up about it (I'm not that clued up on the thyroid) I discovered this was something I should mention to my doctor. I've an appointment with her in 10 days' time (she's been on hols) so I have yet to get into a discussion with her about it.

However after finding this forum I thought I might as well share my results since you're all probably way ahead of me on thyroid knowledge/experience!

TSH - 3.43 IU/L

T4 total - 88.7 nmol/l

Free T4 - 19.7 pmol/l

Free T3 - 5.64 pmol/l

Anti-Thyroidperoxidase abs H 148.1 (normal <34)

Anti-Thyroglobulin Abs H 283.4 (normal <115)

Since sending off for the test I have noticed the thumping heart and headache comes and goes and now I'm beginning to suspect it's connected to something in the wheat/gluten-free bread I bought. Am trying to narrow that down by keeping a food diary. So not sure it's a thyroid issue at all, however clearly there's something going on with my thyroid as the test shows.

Any comments or info greatly appreciated! :)

24 Replies

  • Hi Jadzhia, welcome to the forum. Sorry to hear you've been having problems,

    Your high antibodies mean you have Hashimoto's Disease. This is an autoimmune disease where the thyroid is slowly destroyed by the body's immune system. Which can take years. In fact, you've probably had those high antibodies for years already, which was why you weren't feeling too good. The antibodies themselves can cause symptoms even before the thyroid starts malfunctioning.

    With Hashi's, you can swing between hypo and hyper. But, looking at that TSH, at the moment you are slightly hypo - although, as far as I can tell without the ranges (always, always put the ranges) your FT4 and FT3 aren't too bad, yet. But, without doubt, your doctor will want to wait until your TSH gets a lot higher before she will treat you! She will probably tell you to go back in six months for another test.

    There is no treatment for the Hashi's itself - autoimmune diseases cannot be treated as thing stand, doctors don't know how - what happens is that you are prescribed thyroid hormone replacement to replace the hormones your thyroid will no-longer be able to make. And, without which, you cannot live.

    However, although doctors don't know how to treat antibodies, there's a lot the patient can do him/herself. The first thing, you've already done, you've given up wheat. But, it's not just wheat that is the problem, it's the gluten contained in the wheat, and which is also contained in a lot of other things. Which is probably why you are still having symptoms. You need to look for gluten-free products, not just wheat-free.

    Some people also need to go dairy-free. And, perhaps, sugar-free. You have to experiment with your diet to find out what not to eat and what makes you feel good. The most important is avoiding all forms of unfermented soy, which crops up in so many processed foods - soy flour, soy protein, soy oil, etc.

    Taking selenium can often have a positive effect on antibodies. But, the most important thing is keeping your TSH at zero. You might have a problem with your doctor with that one! Because they don't know very much about thyroid, I'm afraid.

    Still, never mind, we're here to advise you. :) The next thing you need to do is ask your doctor, when you go to see her, if she will test your vit D, vit B12, folate and ferritin. These could be low, and you need them to be optimal when you have a thyroid problem. Optimal for B12 is 1000 - which is quite high - and the others need to be at least mid-range. Supplementing is in order if they are lower than that. But, don't count on your doctor for any help on that score, doctors know nothing about nutrition!

    Finally, when you go for your next test, go early in the morning, after having fasted over-night. And, always, always ask for a print-out of your results. With the ranges. :)

  • Thanks for the welcome and comprehensive reply, greygoose :)

    I do have the ranges, sorry I totally forgot about adding those (new to all this!):

    TSH 3.43 (0.27 - 4.20)

    T4 total 88.7 (64.5 - 142.0)

    FT4 19.17 (12 - 22)

    FT3 5.64 (3.1 - 6.8)

    Well that's given me a lot to think about for sure! I am aware that doctors are really poor at nutrition knowledge. Re the gluten, yes am trying to get rid of that too, but it's sneaky, found it not excluded on a pack of oatmeal, they couldn't rule out contamination so that explains why I got flushes from biscuits I made with it! Since I got my new reading specs I can now read the tiny print so will be doubly careful on that count.

    I'll be doing any testing via mail order, as I said I have a phobia of needles. I can easily do it first thing (well not 'easily' as it's quite a lot of faffing around) but it is possible. I am on pain meds for chronic lower back pain and have to eat first thing in order to have the Diclofenac pill, so will try to do it before that.

    Physically I do feel on the 'hypo' side as I'm often tired, certainly not wired like my mother was with her Graves! I do take vit/mineral supplements, have been doing so since I was 17, but of course it won't hurt to check my levels and I haven't been actively taking any B complex as I only do that occasionally so as not to unbalance my B vits. But I will most certainly check that out, thanks.

    I have cut back sugar as much as possible as it has been giving me other issues, the dairy I wouldn't like to cut as it is probably one of my main sources of protein (cheese). I have never liked milk, but do enjoy a little cheese each day, and yoghurt, well I live on the stuff, I have it 3 times a day. I don't eat any red meat, mainly fish and occasionally (once or twice a month at most) chicken.

    Most certainly expecting to have to deal with this myself so I figure information is my best friend at this point! :)

  • Exclude wheat, barley and rye. The one to watch for is barley malt flavouring, which was prob in your oat biscuits, and can be found in weird places, eg cornflakes and soy sauce. I am afraid you will need yr spectacles by you at all times. Welcome to strange world of Hashis.

  • You sound as though you will have enough iodine, but your serum ferritin might be low.

  • Hi Jadzhia You story is almost identical to mine! I have horrible flushes too and gave up gluten a few weeks ago and feel better for it. Last week I has some buckwheat pasta and felt really ill again so maybe don't go there with that. I'm having my thyroid retested as TSH was up but think like you I have antibodies as I've been feeling ill for years! Sorry to hijack your post!! Keep us updated!

  • Haha no problem, I'm actually pleased to find someone else who attributes their flushes to gluten! I'm not going crazy! :D Perhaps you should get your antibodies tested, too. I don't like the idea of them quietly demolishing my thyroid whilst I slowly feel worse and worse, when I could be helping myself in some way.

  • Getting them done tomorrow!

  • Jadzhia, as you don't eat much meat, you are probably low on iron. It would be a really good idea to get your ferritin tested. Low B12 is another possibility, as I said, but if you're going to have that tested, lay off the B complex completely for a while. Taking it will not unbalance your Bs, but it will skew the test.

    As I thought, your FT4 and FT3 aren't too bad, but your TSH is right up the top of the range. Unbeknownst to doctors, you are actually hypo as soon as the TSH hits 3, but they like to wait until it is 10 until offering treatment.

  • Yes, I've ordered a ferritin, folate and B12 test just now and will see what that turns up. I wouldn't be surprised to be low on iron, as you say.

  • What a great reply greygoose You have helped me also.

  • Thank you, Greenfairy, we aim to please. :D

  • You are welcome. You and Clutter are great help on this forum. It's fantastic that we can get so much expertise on here. Will be most informed when I see GP tomorrow.

  • what supplements are best to increase folate, b12 and Ferritin? i was told to have all 4 iron tests done, but i thought there was just iron and ferritin, not 4 different tests. Figured you would know greygoose. I have a very good Vit d with K2 that worked well for me getting me from deficient D3 to 80 which is upper range and near where i want to be of @90.

  • I don't know what the 'four tests' are for iron, perhaps make a new post asking? :)

    As for supplements, I take Solgar sublingual B12 (methylcobalamin) tabs (5000 mcg) 1 per day along with a good B-complex (Jarrow's B-Right) which includes folate. Ferritin I take as Iron Bisglycinate (Solgar's Gentle Iron) along with Vit C to help absorption and prevent constipation (take these latter two well away from any other supplements). Some people here take Ferrous Fumarate tabs for iron instead so that's also a possibility, but more likely to cause constipation. Depends on your inner workings which you may prefer!

    Edit: And I see greygoose spotted your post too, so lots of good info there! :)

  • I think there's a test for just about every vitamin and mineral. But some of them are unreliable - like magnesium - and some are just too expensive, so rarely done.

    We always recommend getting vit D, vit B12, folate and ferritin done for starters, so that you can build up from there. If those four are all optimal (unlikely if you're hypo) then there's no need for further tests. But if they're sub-optimal, then you need to supplement them, along with their co-factors (B complex with B12, magnesium with vit D, etc).

    However, if ferritin is too high, you need to know why, and that's why you need the other tests for iron. There could be a problem with your iron, or there could be inflammation, etc. and you need to know.

    If ferritin is sub-optimal, you need to supplement with some kind of ferrous fumarate, plus vit C.

    If B12 is low, and you have symptoms, then you should supplement with methylcobalamin (B12), and you should also take a B complex. If your folate is also low, get a B complex with at least 400 mcg methylfolate, and that will raise your folate. If the B12 is good, but the folate is low, just get methylfolate.

  • thank you Greygoose. My Vit d3 is finally almost where i want it, B12 is no where near a 1000 so that needs work but not low, ferritin was low and iron was mid range which surprises me for my almost meatless diet. Right now I take krill oil (omega), magnesium, Vit D3 with K2, selenium super complex with Vit E, easy iron (iron Glycinate which has Vit C, Folic acid and B12 with it and the iron in it is Ferrous Bis-glycinate), ashwagandha for my adrenals and MSM powder (some days.) With my last labs do you think i need more T4 or more T3 greygoose?

  • I've replied on your thread of two days ago, so as not to clutter up Jadzhia's thread and in box!

  • thank you

  • I'm so glad to have found this forum, there's a lot of information to take in and just googling everything is mind-boggling and not always accurate, so thank you for all the info. :)

  • Yes, agree it's a great forum with so much help at the touch of a keyboard. I'm very thankful for it.

  • MY TSH was 75 8yrs ago and before thatI did not have any specific awareness that my thyroid was going downhill , may sound suprising but I attributed it to CFS which I had battled with for many years. Had gone from person to person for help off and on for 2 decades, spent a lot of dosh. IN 2008 COLLAPSED , just exhausted ! Did private thyroid tests diagnosed with Hashimotos, and menopause started afew years ago. Been housebound for 8 yrs I like the protocol of Dr Alexander Haskell, and Isabella wentz the pharmasist.Both of these people have really positive approaches to the illness. I am trying to get hold of the EFA supplements recommended by DR HASKELL that contain a mix of walnut, hazlenut, apricot and sesame oils, anyone know where to obtain them? ANYONE LIKE TO COMMENT ON MY FIRST REPLY WOULD BE MOST WELCOME.

  • Never heard of dr Haskell Cj183, how did you hear about this dr?

  • Hello Hashismom34 ! Sorry for delay in replying but you were asking how I had heard about Dr Alexander Haskell well I wanted to say that Thyroid UK had a review written up about his book HOPE FOR HASHIMOTOS . This was printed in one of the Harmony mags published by Thyroid UK . I read some of his book and you can look him up on U Tube .

  • You have what i have, hashimotos thyroiditis. It is an auto immune condition that ends up causing hypothyroidism. I cannot tell about your T3 & T4 since your numbers at your lab run differently than mine and you hav not listed the ranges for us, but your TSH is showing subclinical hypothyroidism. When you have has Hashi's, your TSH should be around 1.

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