Pernicious Anaemia Society
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I'm new here and have a couple of questions!

Hello,

Firstly, this forum seems very helpful so I'm pleased I came across it and hopefully some of you will be able to advise me with my concerns.

I have been diagnosed with low B12 levels again this year (194), I had low levels last year too (197) and was prescribed tablets but never tested again until I returned to the GP about 3 months ago with symptoms and was given an MOT and lots of bloods taken etc. If I'm honest, I didn't read up much about B12 deficiency last year and ignorantly presumed it was like low iron levels an easily treated with tablets. However, because I was diagnosed again this year, I started reading up about the condition and P.A., and all the symptoms. Worryingly, I have had almost 80% of the symptoms for at least the last 2 years and it's the neurological symptoms that concern me the most.

I have just finished my 2 month course of the B12 tablets and had more bloods taken last week and my level has increased to 346 which is "bang in the middle" according to the nurse. Yes, it's an increase but to me it doesn't seem much after 2 months of treatment? I've read some people have readings of almost 1000 after treatment so I'm going to try and push for injections when I visit my GP next week because my symptoms haven't improved whatsoever. Do you think the GP is likely to agree to injections?

I have been reading how my symptoms compare to other conditions too and M.E. and M.S. also have similar symptoms but at the moment, given my low B12 levels I'm guessing this is the root of what's making me so poorly.

Sorry, I've just realised that I've almost typed an essay here but sometimes it's cathartic to just type it out and know that it's being read by people who understand!! When you don't have any physical symptoms like a broken limb, people don't tend to believe you when you say you're tired and confused and dizzy all the time - which is very frustrating!

Thanks everyone :-)

3 Replies
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There are better informed people on here, but I can tell you that if you are b12 deficient, purely because you cannot absorb it, then you need injections not tablets. If it's because you are vegetarian or vegan then tablets can help. B12 levels will increase in your blood but that doesn't mean it's getting into your cells, so really retesting b12 is useless.

If you have poor absorption then you need injections for life, no retests needed and you should read the guidelines on this from the BNF, BCSH and NICE. I'm no good with links but others are!

Look at b12d.org too.

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Thanks for replying and for advice on where to find guidelines. I want to be fully armed with all my information when I see the GP next week!

I'm not vegan or vegetarian so I think it possibly is a case of my body not absorbing enough B12.

It does seem that many GP's, especially here in the UK, don't take the issue of low B12 levels quite as seriously as other countries and many people have a battle on their hands in fighting for treatment that works!

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Absolutely! I did end up going private and treating myself, but eventually the NHS caught up with me. It took aboyt 6 months though! Try not to treat yourself unless you don't get anywhere, a last resort.

There are other tests you need, but other members have a better grip on that. Good luck. :-)

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