B12 deficientcy : Can anyone tell me... - Pernicious Anaemi...

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B12 deficientcy

TAB100 profile image
9 Replies

Can anyone tell me, once you've been diagnosed B12 deficient and been given B12 injections should you take B12 for life. I was diagnosed with a normal sized/shaped red blood cells with a count of 152. I also have MS, will this make a difference. Thank you. X

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TAB100 profile image
TAB100
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9 Replies
pvanderaa profile image
pvanderaa

Yes - join the lifers club. Start a logbook if you haven't already and try to score your symptoms.

The log serves to monitor your progress long term as the progress is very slow to repair nerve damage. It also serves as your memory due to any short term memory loss.

You can also use it to sort out new symptoms from gluten / dairy / soya.

clivealive profile image
clivealiveForum Support

Hi TAB100,

You say you have been diagnosed b12 deficient and been given injections.

Had you been diagnosed as having Pernicious Anaemia (P.A.) then yes b12 injections are for life.

I'm not a medically qualified person but hopefully, if your deficiency is due to diet, over exercise, or some other reason, you won't then need to have continual injections once your levels are restored.

I hope you get to feel the benefit soon and wish you well for the future.

TAB100 profile image
TAB100 in reply to clivealive

What's the difference between PA and B12 deficientcy?

clivealive profile image
clivealiveForum Support in reply to TAB100

As I said, I'm not medically qualified but I think the simple answer is that with P.A. I am unable to absorb b12 through my stomach because I had gastric surgery for a perforated peptic ulcer back in 1959 when I was 17 and therefore I have to get my b12 via injections for the rest of my life.

With b12 deficiency it may be due to poor diet or other reasons - others on this forum will be better able to explain or perhaps you should ask your doctor "why"..

However, fear not, there is life after P.A. as I'm still "clivealive" at coming up to 75 in June this year.

I hope this helps

Gambit62 profile image
Gambit62Administrator in reply to TAB100

B12 deficiency is what causes the symptoms. PA is one of the possible causes of a B12 deficiency - others are

- insufficient B12 in your diet (only found in animal products so unless you are a strict vegan and/or a high performance athlete who is using a lot of B12 - it's unlikely to be diet)

- gastric surgery (eg gastric band) or genetic abnormalities affecting the ileum

- low stomach acid (more or less same symptoms as high stomach acid so often treated with anti-acids that make it worse). This tends to be more of a factor as you get older

- drug interactions (including metformin - used to treat type 2 diabetes, NSAIDs, some anti-convulsants, PPIs .... basically a very long list.)

PA in the strict sense is an autoimmune disorder that attacks the mechanisms that the body uses to absorb most of it's B12 from food (99%).

Unfortunately PA and B12D are often used interchangeably causing confusion ... and often because GPs themselves are confused.

There are many reasons, classic PA being only one, why you cannot absorb b12. However, if you have had an MS diagnosis the picture may be more complicated. Apparently MS can also cause macrocytosis and many MS sufferers have benefited from life long b12 injections. Sally Patchalok has a very good chapter on this in her book. Could it be b12?

Lily73 profile image
Lily73

Whether you need injections for life depends on the reason for you being b12 deficient. If you cannot absorb or process b12 (various different conditions cause malabsorption including pernicious anaemia, coeliac disease, Crohn's disease, severe IBS) then you will need them for life. If you can absorb it and the deficiency was due to inadequate intake or the side effects of a medication you took for a while for example, then you won't need injections for life. So really you need to establish the cause, or at least whether you are able to absorb it, with your doctor.

I have read about b12 injections being good for MS, in the absence of deficiency. I don't know much about it, but it's probably worth looking into. I hope that helps and good luck :-)

Gambit62 profile image
Gambit62Administrator in reply to Lily73

My understanding is that the problem in MS is that the body is no longer able to maintain the protective layer around nerve cells properly. MS is a frequent misdiagnosis of a B12 deficiency as one thing that can cause problems maintaining the protective layer is not having enough B12 (same for B9 - folate). My guess is that even if B12 isn't the problem taking B12 - particularly methylB12 can help maximise the bodies remaining ability to repair and maintain the protective layer so can help even if there isn't a B12 deficiency.

Gambit62 profile image
Gambit62Administrator

Likelihood is that your deficiency wasn't caused by diet so the injections will need to be for life - you are no longer able to absorb B12 from food, nor are you able to store and recycle it (generally stored in liver and released into the ileum in bile for recycling - which isn't going to work if the ileum isn't able to absorb B12).

That means you need another way of getting B12 into you. Injections are the most efficient way of doing this but there are other options - but they will mean greater quantities of B12 than injections.

Even injections - certainly not at the frequency that is quoted in text books - can be insufficient to ensure that B12 levels are as high as you need and most people have problems with some of the standard regimes - especially the 3 months that tends to be the norm in the UK ... and seems to be based on absolutely no scientific evidence that anyone can produce.

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