Advice please: Hello I was wondering if anyone... - Thyroid UK

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Advice please

lal2502 profile image
4 Replies

Hello I was wondering if anyone could help me please? I was diagnosed with an underactive thyroid about 8 years ago now. After a long while my levels were finally right and I take 125mg of Thyroixine now. I have always felt okay with this and managed to lose the weight I had gained before diagnosis.

A few months ago I started feeling tired, drained etc. again you know the normal underactive symptons we all get. I went to my doctor and eventually was found to be B12 deficient, which as I'm sure many people know causes a lot of the afore mentioned symptoms too. I am being treated for this with B12 injections which do help although I don't get them as frequently as I feel I need them. My GP at the time ordered a few blood tests including one to check for antibodies which came back clear.

I have since joined this forum and one for pernicious anaemia and the more I read the more I realise I should be doing more research into all of this and in order to do this I know I need to get a copy of my blood results from my GP.

My worry is I have diagnosed with these disorders and should my GP be looking into why this has happened? It would seem they are connected yet I feel I have just been left in the dark.

Can anyone help me at all as to what I should do or indeed anything.

Thank you

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4 Replies
PinkNinja profile image
PinkNinja

Unfortunately the test for antibodies that you mentioned is not at all accurate and, in up to 50% of cases, gives a false negative. This means you could well have pernicious anaemia that has not been picked up by the test.

If you are looking for more information on this subject, Martyn Hooper's book is very good and very readable. There is also a lot of information on the Pernicious Anaemia Society's website, which Martyn set up. We also have a few members on here who know quite a lot about the subject.

pernicious-anaemia-society....

There is currently a campaign to get doctors to prescribe B12 injections as frequently as they are needed rather than every 3 months. As you are finding that you need yours sooner, that suggests to me that you do actually have pernicious anaemia. If it were a simple deficiency from inadequate diet, the loading doses would have done their job and you wouldn't need top-ups so frequently. It suggests to me that you are not able to absorb B12 from food or store it effectively.

Pernicious anaemia and thyroid disease do seem to be related but I don't think anyone knows why yet. Maybe someone else will come along and correct me on this :)

If you want more information on thyroid disease you may find the main Thyroid UK website helpful. The purple menu on the left will link you to any information you need.

thyroiduk.org.uk/tuk/

And keep asking questions. There are some very knowledgeable people on this forum who should be able to answer any questions you have.

Sorry I couldn't answer all your questions.

Carolyn x

lal2502 profile image
lal2502 in reply to PinkNinja

Hi Carolyn

Thank you so much. This forum is brilliant it's so good to know there is so much support out there. At the same time it's also a crying shame that these so called "medical professionals" do not seem to have the time or inclination to help us sufferers.

Not sure about anyone else but most people around me just think oh she's vitamin deficient and nothing beyond that. It makes me so mad!!

Sorry for the rant I'm having a bad day. As we do :-(

Thanks again xx

Heloise profile image
Heloise

There are many good websites like this one: stopthethyroidmadness.com/m...

but this functional neurologist really explains what goes wrong in Hashimoto's

youtube.com/watch?v=k_Kr5Rx...

lal2502 profile image
lal2502

Thank you Heloise that is so interesting. I guess I have a lot of homework to do starting with getting my blood test copies. There's so much I don't know!

Laura xx

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