No cause found for B12 deficiency...frustrated

Posted , 5 users are following.

Hi all,

I know I've posted a few times on here now but I've encountered another frustration.

I was told I had B12 level of 78 a few weeks ago. I had the intrinsic factor test which came back negative so doctor has ruled out Pernicious Anaemia.

That's good don't get me wrong but the doctors have now offered no explanation and it's been a case of "we'll see you in 3 months for your next injection". I'm worried and want to know what's caused it. I've got no stomach issues other than mild upper tummy pain. Not on medication and never had a stomach op etc.

And I'm not a vegan and eat plenty of foods which are a good source of B12. So I'm so frustrated and concerned about the unknown.

Can anyone shed any light please? I'd really appreciate it!

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  • Posted

    You sound a lot like me.

    I tested negative the first time, and positive the second time. The tests are unreliable.

    In view of your stomach pain, you should be seeing a gastroenterologist about a scope, and he should be repeating the tests for ifa and pca. It's taken me fully 7 months to get this far, and although I saw the specialist once at the start of July, no scope was done.

    Instead, I agreed for the tests for PA and ferritin to be repeated. My ferritin was low, and the results of the PA test were overlooked (even though they were positive for pca). It was only my insistence on seeing them that brought the fact that I DO have PA to light - but it took nearly 10 weeks.

    My readings could mean very little, but positive PA results should not be ignored in view of the increased risks of stomach cancer - sorry to be blunt.

    Any kind of bleeding high in the bowel (innocent or otherwise) can go unnoticed and cause low B12/low iron. Ulcers, polyps, IBD, etc. can also be behind it.

    The NHS is a shambles at the moment, and it is down to each of us to try to understand our condition and ensure that we get optimum treatment.

    I've another B12/ferritin test on Monday, and it seems likely I'll be going back for a scope............. At this rate, I'll have been chasing around for 12 months before anything is resolved.

    Incidentally, although your doctor will probably call you "normal" if they can get your B12 up to the mid 200s, internationally 500 is regarded as the healthy minimum. In Japan, where this applies, dementia is rare. The PA Society are campaigning for better testing and treatment here. God knows, B12 is cheap and safe to administer, and makes a huge difference to life expectancy. : )

    Your GP should be prepared to give you sufficient cobalamine to resolve your symptoms, not just the "approved" dose. So don't be fobbed off with the "oh, we are just following guidelines" tosh. Warn them you'll buy extra ampoules from Turkey and inject yourself if they don't help. That'll shake 'em up! : )

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  • Posted

    Hi Louise, you could have Helicobacter pylori, which may give you stomach pain. You could have something "more suspicious", which is causing you not to secrete intrinsic factor. If you are taking ant-acids this also stops you secreting IF. In addition if you are on GERD medication this is a problem. Alternatively you could have hypothyroidism, which is very common as around 12% of women have it. Of these 50% become B12 deficient. So B12 deficiency due to hypothyroidism is actually pretty common.
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  • Posted

    Hi there I too have not been told why I have PA ? I paid to find out and was sent to a genre sign had a scope and was told nothing wrong except a small sore and given antacids , my GP keeps telling about the guidelines so am now going to pay to see a haematologist privately hopping he will give me more thoughee blood tests meanwhile I have been to Spain and bought some of the B12 and needles ten voles needles and syringes for under £10 over the counter in a reputable chemist no questions asked. I  have a friend who will inject me in between my normal jabs as I am so sick of feeling like I am fading away for half my life ,

    will post if I get any positive or interesting news from the hemotolgist ,or I will be going regulary to Spain for my holidays !!!! Hope you get your answeres from your GP I am not getting very far with mine so that's why I am looking after my self .


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  • Posted

    Hey there,

      My name is kristen and I'm 24 years old.  I just experienced a grand mal seizure this past thanksgiving night.  My blood work has been showing up crazy as far as anemia and potassium levels but everything else is perfect.   I have enlarged red blood cells and had a very high sugar level in the ambulance.   I feel very confused and scared about what I just experienced so if anyone is out there please help

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