B12 defiency help: Hi there I'm 31 a... - Pernicious Anaemi...

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B12 defiency help

Al1985 profile image
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Hi there I'm 31 a couple of weeks ago I was diagnosed with b12 defiency after having a blood test my symptoms I had was pins and needles/ numbness /tiredness/fainting!

I have been given the injections every other day for 2 weeks my last one being tomorrow but I still feel awful I'm falling asleep in the day which isn't great with 2 children I have constant headaches pins and needles in my legs feeling faint all the time!

I had another blood test last week for pernicious anemia and the nurse told me it's come back negative!

I know the injections take time to work but I just feel I'm getting worse everyday! The nurse told me to book in with gp so I have an appt this morning. Just wondered if anyone has any advice many thanks

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Al1985
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taka profile image
takaAdministrator

Welcome! :-)

Sadly the test for pernicious anaemia (anti-intrinsic factor antibody) is not great. It is very specific (ie if you are positive it pretty much means you have PA) but is not very sensitive and misses ~40-60% of those with pernicious anaemia. :-( This means despite testing negative you may still have PA. (This is explained much more in the guidelines below.)

This is for the UK: as you have neurological symptoms your GP should be giving you injections ever other day until no further improvement (with a review at 3 weeks) then injections every 2 months as per the guidelines from the British Committee for Standards in Haematology: pernicious-anaemia-society....

It may be worth checking your iron and Vitamin D (if not already checked) as being low in these can all leave you feeling rubbish with fairly similar symptoms (also similar to those of B12 deficiency!) Folate works hand in hand with B12 so should not be deficient in order for B12 to work effectively so needs to be checked too. Sadly some of the causes of B12 deficiency may well lead to deficiencies in these. If your GP hasn't already checked it may be worth also checking your thyroid and for diabetes as they also have some of the same symptoms too.

There are quite a few reasons for B12 deficiency other than Pernicious anaemia such as crohns, coeliac, certain medications, being vegan (and not supplementing - B12 is found in animal products) and many more

pernicious-anaemia-society.... and b12deficiency.info/what-are... Many of these can also lead to malabsorption of things like iron etc too.

Many people also have an increase in symptoms when they begin injections and their bodies begin to repair.

Have a look at the pinned posts on the right (or right at the bottom of the page on a mobile) as there is lots more information that may be of interest.

Al1985 profile image
Al1985 in reply to taka

Thankyou so much for replying! Yes my vitamin D is extremely low too and gp has given me the highest dose to take!

My gp is doing bloods again in 2 weeks time to test levels of both b12 and vitamin d and she said if still low they will give me more injections and will be seeing gp again a week later

So fingers crossed I start to feel better

I'm also being referred to a dietician as I am a vegan but I've been one for 20 years! I've always thought I've eaten well but will help me to find foods I guess with the nutrients I need

Many thanks

taka profile image
takaAdministrator in reply to Al1985

Ah, a dietician may be a good idea. Being vegan it is difficult if not impossible to get enough B12 unless you supplement as it is found via animal and some bacterial sources. That is not to say B12 deficiency is not caused by something else though...

fbirder profile image
fbirder in reply to taka

Yup, what taka said.

Vegans must take supplements. Despite what some people might say you can't fix a B12 deficiency by eating molasses, quinoa, kale, yoghurt, kimchi, or dirty vegetables (not even the ones seen on 'That's Life'). Nor will dangling coloured bits of rock around your neck make the slightest difference.

Many breakfast cereals are fortified with B vitamins and pills should also work.

The normal human body is very good at keeping hold of any B12 it has. It can store years and years worth in the liver, recycling it via the bike and gut. So it's quite possible that your levels only got low enough in the recent past for you to notice. That would suggest that you don't have an absorption problem (as the recycling wouldn't work).

The good news, if that is the case, is that you should be able to get levels back up without injections - just by taking the tablets.

Personally, I would get some 1000 ug tablets (or sublingual lozenges- both as effective in your case) and take one a week, after the next B12 test. If your problem is a lack of dietary B12 then that should sort it, although it may take a while to fix it totally.

Al1985 profile image
Al1985

Thankyou I guesss just going to have to wait and see how I feel in a couple of weeks many thanks

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