High antibodies for years but on no treatment

Hi everyone.

I have followed this forum for a long while and it has been really useful. Thank you all for helping those of us looking for answers.

I had some private blood tests done about 5 years ago which showed TSH slightly over range at 5.8 (range 0.27-4.2) but positive for peroxidase antibodies.

When I went to my NHS doctor he did some more checks and decreed that thyroid was OK as TSH was about 4.2 and just under his range. However the antibodies were very high. I was low also in iron, folate, B12 etc. After referral to a specialist at the hospital I receive B12 injections every 12 weeks but that is it. I did see an endocrinologist who seemed more interested in whether I might have diabetes. He asked my GP to just monitor my TSH every six months telling me the thyroid might die eventually but could take years - and that is all. My antibodies remain high - although lowered when I avoid gluten (a tip I picked up from this site). My TSH usually comes in between 3.0 and 4.2.

I continue to feel tired, have aching knees, brittle nails, have a low resting heart rate (56) and am always cold.

I have just had another set of private tests carried out and would welcome any opinions. The results are as follows:-

TSH 3.13 (range 0.27-4.2)

Free thyroxine 13.2 (range 12.0-22.0)

Total thyroxine (T4) 95 (range 59-154)

Free T3 3.9 (range 3.1-6.8)

Thyroglobulin antibody 28.5 negative (range 0-115)

Thyroid Peroxidase Antibodies 216.5 (range 0-34).

TPO has been as high as 800 in NHS tests.

So in theory everything but TPO in range although I know many think TSH should be lower to feel good.

Does anyone have any suggestions?

Thank you in advance

Lily

9 Replies

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  • Hi Lily, maybe you know that you are not just SLIGHTLY over range....at least not the range that we aspire to which is 1.5. But after many years of reading about health, I think we have to look beyond the thyroid gland. The gland is functioning as well as can be expected while being attacked by our immune cells. Almost any organ can be targeted, for instance R.A. attacks joints and there are many more autoimmune conditions. We should go to doctors who can treat the condition instead of putting a band aid over the symptoms. In your case, they obviously didn't even do that. This is why I have posted the videos by a functional neurologist who points out the various areas that produce low thyroid function. I don't know if you have seen the videos by Dr. John Bergman who excellently describes how to avoid it. I can say that we do many things thinking they are all right but are not. Simply drinking pure water and eating clean food is not that simple and is often the root cause of leaky gut which is the beginning of a dysfunctional immune system.

  • I wouldn't feel well with free T3 and free T4 as low as yours, or TSH so high, but we are all different. Your symptoms are consistent with thyroid under treatment, though brittle nails is a B12 symptom I believe. I would have thought that your GP would be interested in so low a heartbeat. Could you ask for a second opinion from another endo and make sure you see one recommended by throid UK?

  • If you cannot educate your stupid ignorant GP simply self treat with NDT

  • I think my heartbeat has been more like 65 over recent months but the 56 came up at my recent annual employment medical. The doctor suggested it might be down to exceptional cardio fitness - I begged to differ as I do no exercise . I suggested it was thyroid related. Then when the TSH came back around 3.0 again it was ignored.

    I have thought about the NDT route - a little nervous to be honest as I think my thyroid flares occasionally with heart palpitations. I fear making it worse. Maybe I need to try it and see.

    Heloise - thanks for the links - I skimmed but shall watch the video fully tomorrow. Maybe there are supplements like selenium which might help the T3 conversion as that seems the lowest.

  • Sweetie, you haven't got enough to convert! Your thyroid just isn't doing it's job anymore, poor thing. And whilst it is struggling like that, it's putting a strain on your adrenals. Just taking selenium isn't going to cut it!

    Although some people say that taking selenium lowers antibodies thereby lessening future attacks. But a lot of damage has already been done. It's time to put your poor gland to sleep by taking thyroid hormone replacement and lowering your TSH to zero. THAT will stop the antibody attacks. No gland activity = no antibody attacks.

    So, unless you can find a more intelligent doctor, I would think your only hope is self-treating. Although NDT might not be the best for you, given that you have Hashi's. But you could investigate buying Levo (T4) and/or Cynomal (T3).

  • I totally understand your fears but it actually is nothing to fear in taking NDT. It's been used for a hundred years, at least Armour has and it is still available but most NDTs are similar. Even the way a doctor would or should prescribe is standard and you are just as good as a blood test. In other words you would know when you are getting to an optimal dose. In fact you may do a better job of it than any doctor.

    stopthethyroidmadness.com/m...

  • I would pay very little attention to TSH as a guide, after this. Your free's are low. You are terribly Hypothyroid and you have an Autoimmune Disease..your immune system is attacking your thyroid. You need thyroid meds. t4/t3 combo ..anything with t3 in it. I didn't do well on ndt, but many do. The doctors have neglected you and should be hung from the highest tree!! Self treat if they won't help you.

  • I am so grateful to everyone who has taken the time to reply. You have all helped reassure me that its not all in my head and that I am right to think I have a thyroid problem.

    I will look into self medication but also check out if I can find a sympathetic private endo.

    Thanks and good luck to everyone in dealing with your own thyroid issues.

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