I´ve just been diagnosed with thyroid antibodie... - Thyroid UK

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I´ve just been diagnosed with thyroid antibodies and b12 deficency but as yet I don´t have any symptoms ...

terry_1 profile image
13 Replies

... yet. Apparently there seems to be a link between the two conditions, does anyone know if one caused the other condition to develop and what should I do in regards to preventing hyperthyroidism. Thank you

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terry_1
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13 Replies

You're lucky you don't have any symptoms, that probably means you've caught it early. May I ask why were you tested for it if no symptoms? Your question is interesting because B12d is linked to both hyper and hypo thyroidism, so you could develop either condition, or none of them. I think it's recommended that you have a thyroid screening test annually just in case, and sooner if you have any symptoms. I would advise you to visit these 2 websites:

pernicious-anaemia-society....

b12d.org/

I can only speak from my own experience and say that the best way of minimising the chances of developing a thyroid condition is to get proper treatment for the B12 deficiency, current "dose" information can be found here:

evidence.nhs.uk/formulary/b...

My own B12d was first diagnosed in 2006 and I was only given the loading dose (no lifetime maintenance jabs), I developed Graves in 2012, after 6 years of no treatment. I have no idea what would have happened if I had had those jabs. I had to fight to get them back again. Beware that your doctor does not stop your injections once your serum B12 is back in the "normal" range. If you have PA treatment needs to be for life.

You need to make sure your folate and ferritin are at good levels. And if you have any gastric symptoms it is worth getting screened for Coeliac Disease, H Pylori infection etc.

If you have any lab results post them - did they do full thyroid function tests? TSH / T4 / T3?

Hampster

terry_1 profile image
terry_1 in reply to

Thank you for getting back to me so soon and with so much information to think on. I´m a 46 year old with upto now perfect health, never had anything wrong until my sister suggested getting tested for thyroid as she had thyroid cancer. So just to shut her up I got tested and the results came back showing very low levels of b12 and thyroid antibodies. I got tested here in Spain where I live. All the other essential vits etc are in good order but It seems my defences are attacking something according to the lab results. Also I haven´t got pernicous anemia antibodies, which is a bit unusual, don´t you think. ? Just one more thing there has been a paper published on thyroid antibodies and b12, you may already know about It, published in all places, Pakistan and a bit difficult to understand as I have little understanding of medical terminology.

in reply toterry_1

Not that unusual, lots of people with PA don't have antibodies. If you had the anti-intrinsic factor test it's specific for PA but only about 50% test positive. So a positive result means PA, but a negative result means, well nothing really! Anti-parietal cells are more commonly found in people with PA, something like 85 or 90%, but they are not specific for PA so are therefore not considered diagnostic. I don't necessarily agree with that, because parietal cells make intrinsic factor, so if your parietal cells are under attack you won't be making any intrinsic factor, so why would you have intrinsic factor antibodies? Anyway, did you have both types of antibody tested?

If you read this page on the B12d website you will see they have an interesting theory on why the thyroid goes wrong with B12d, although I don't know if there is any research to back it up (scroll down to "Endocrine System"):

b12d.org/3-b12-and-lipid-me...

Is this the Pakistan research you refer to?

ncbi.nlm.nih.gov/pubmed/186...

As you're in Spain your treatment may differ from the UK guidelines I posted above. Do they use Cyano or Hydroxo? What frequency are you getting? I'm pretty sure you can buy it over the counter to self inject anyway in Spain, if you feel like you need more. Anyway, lots of info and other people's stories on the PAS forum (website above), which you can read without being a member. If you fancy really finding out more I can highly recommend the 2 books on this subject:

Could It Be B12?: An Epidemic of Misdiagnoses - by Sally Pacholok & Jeffrey Stuart

Pernicious Anaemia: The Forgotton Disease - by Martyn Hooper (he's Chairman of the PAS)

terry_1 profile image
terry_1 in reply to

will look at the test results again and see if all the tests you mentioned have been done and yes that was the research I was reffering to. thanks again lots of information to be thinking about.

nobodysdriving profile image
nobodysdriving

Symptoms or not you do NOT want to leave the low B12, you should really get treated, it is associated with too many 'bad' things (including dementia), the longer you live it the more it will get to you and it will eventually.

Good for you to find out about it so early.

terry_1 profile image
terry_1 in reply tonobodysdriving

Thanks for your advice, I´ll be doing something about It this week.

in reply tonobodysdriving

Wouldn't it be great if there was a screening programme for this and thyroid disease? It ruins so many lives yet is totally invisible.

terry_1 profile image
terry_1

If it wasn´t for my family or the help I´ve received here I would have had increasingly bad health with some nasty symptoms. So yes I do think people should be tested on a regular basis.

Margo profile image
Margo in reply toterry_1

Interesting the link between low B12 and thyroid disorders. I remember 20 years ago seeing a very eminent Naturopath in London, who diagnosed large platelets. I now underestand that to be low B12. Several years later I developed thyroid cancer.

Get that low B12 result sorted.

Good luck!

terry_1 profile image
terry_1 in reply toMargo

yes thanks for that, will do. I´m also looking at vitamin suplemention and change of diet to help improve my situation and all the pages i´ve visited seem to have gut problems in common as a possible cause of autoimune diseases.

Margo profile image
Margo in reply toterry_1

Yes, all problems start in the gut.

terry_1 profile image
terry_1

Have just been diagnosed with a nodule on the right hand side of thyroid. Apparently my thyroids T level are ok, have no symptoms of almost anything, but have low vit B12 and thyroid antibodies. Can anyone offer some advice on this ?

in reply toterry_1

Hi Terry_1, you should post this as a new question, should get more replies that way. Try and get a copy of your blood test results and post them too. If a doc is telling you they're OK, that just means they're in range rather than optimal. H x

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