Diagnosed with low B12 and Folate - Pernicious Anaemi...

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Diagnosed with low B12 and Folate


Hi Everyone,

l had a blood test in January which showed low B12 and Folate, also low calcium but he said it was ok. My symtoms were very bad coccyx pain, swollen foot and general pains in my bones, feeling shattered but not sleeping and headaches. l had an initial dose of six injections in two weeks and then told tto have one a month. l didn't notice any huge changes in the two weeks but after two weeks without l am on a week off and shattered again. l went back to a different GP who looked at my notes and said i should be having one every three months. l also asked about Vit D test which he was happy to do but brushed it off saying we would all be low this time of year. Told he l wasn't sleeping and he offerd Amitrityline? l said no as taking tabs worries me. l asked why l am low in B12 and he didn't seemed bothered, said l would probably need injections for life. l asked how we would know if my levels were up and he said another test but they won't allow him to retest for 3 months? Any advice would be helpful

8 Replies

I am assuming from your post that you are based in the UK.

I think your GP sounds like he is pretty ignorant when it comes to vitamins - which isn't uncommon but can be frustrating.

You clearly have neurological symptoms - the aches that you mention - as such the official treatment protocol would be 3 shots a week until symptoms stop improving followed by bi-monthly top ups with hydroxocobalamin.


see p8

Most B12 is absorbed in the ileum - there are several possible problems that can cause problems - an autoimmune response that attacks the mechanisms involved in the ileum is the one that GPs tend to be most aware of and the only one that is really mentioned in the guidance provided by NICE. Others include: a) lowering of acidity levels in the gut (generally gets worse as you get older), b) drug interactions - including some used to deal with acid reflux and heart burn and lower stomach acid when in fact the problem is low acidity levels so it just makes the acidity problem worse c) gastric surgery affecting the ileum - which can include gastric band and d) genetic abnormalities affecting the ileum. Whatever the cause the solution is the same - find another way of getting B12 into the body - the most effective way of doing this is injection - and the favoured form is intramuscular injections.

Treatment regimes vary from country to country - in Germany maintenance shots are every month (still using hydroxo).

Under normal circumstances the body is very efficient at recycling B12 - storing excess in the liver and releasing it into the ileum in bile. One consequence is that a B12 absorption problem can take years and even decades to manifest as a full blown deficiency depending on the scale of the absorption problem (think of a leaky bucket and the effect that the size of the hole has on how quickly the contents drain away).

Although it is true that most of our Vitamin D comes form spending enough time in sunlight, I believe there is one element that is actually absorbed from food - so on that level it isn't a surprise that you are deficient in more than one vitamin. Vitamin D is important for processing calcium.

People are individuals and can vary quite a lot in what levels of vitamins they need - this is particularly true with B12 - unfortunately test results don't reflect this and GPs these days tend to treat test results rather than people - bit of a disaster when it comes to B12.

As you are no longer able to store B12 in the liver for use as needed what happens with the B12 from injections is that it stays into the blood until it is either used or removed from the blood as a waste product and passed out of the body in urine. The rate at which this happens is dependent on how much B12 you have in your blood - faster the more is there and even the average person loses most of the B12 that is injected within 48 hours of injections.

You may find this post interesting in understanding where the non-sense of maintenance shots comes from - when hydroxocobalamin was first introduced to the UK maintenance shots were every other month.


Even every month isn't necessarily enough, but guidelines don't reflect this. I find that my symptoms return within 24 hours of a shot and many of us supplement because the regime in the UK just isn't adequate for us.

Most GPs are totally unaware of the range of symptoms caused by B12D and there is a tendency to assume that any symptoms you report after you are receiving injections can't possibly be to do with B12 (been there, done that, treat myself). One thing to do is keep have a good look at all the symptoms and really think about whether they apply ... and keep a diary of where they are.


There are other things that can go wrong with B12 once it is actually inside you - some people have problems converting it to the forms that are actively used by cells and others have problems with the mechanism that transports it to cells.

To be honest, once your treatment has started blood test results mean even less than they did before* and they are only significant if they are low - showing clearly that you are a person who processes and gets rid of B12 very quickly and hence clearly needs treatment more frequently.

*people vary very much in how much B12 they need and it is possible to be deficient well into what is labelled the normal range by most labs but this isn't reflected in test results- though it is reflected in the guidelines from BCSH (first link). Also, the serum test looks at all forms of B12 - not just the forms that are used at the cell level.

Jonan71 in reply to Gambit62

Thank you, l am interested to get my Vit D back as this could be why l have had so many problems with my leg bones. You mention about reflux? l have been having reflux problems at night on and off so is this linked? Any ideas why l am tired and shattered but don't sleep once in bed?

Gambit62Administrator in reply to Jonan71

B12 is used in various ways in the brain and helps regulate the chemicals that help you sleep.

Sounds like your absorption problem may well be acidity levels. Significant numbers of people - myself included - find that the acid reflux problems go away with adequate B12 supplementation.

You can top up for yourself - doesn't always work for everyone - but you can't overdose on B12 (though some people do have problems with specific forms). People also respond very different to different forms.

ways of supplementing: sublingual tablets and sprays, nasal spray (my own favourite), skin patches ... and it is even possible to source injectable B12 from outside the UK - but make sure you are using a reputable source.

forms of B12: cyanocobalamin, hydroxocobalamin, methylcobalamin and adenosylcobalamin. People respond very differently. I use a mixture of hydroxo methyl and adenosyl as they seem to work for me with different treatments. Methyl and adenosyl are closest to the formats used at the cell level so require less processing and that can help some people - but there seem to be some genetic factors that can actually mean that these formats may make people feel worse rather than better.

One other thing to bear in mind is that your body needs folate (B9) in order to process B12 and it is quite possible to deplete your folate levels and hence not be able to process the B12 you have in your blood.

Please note: to avoid losing post I saved and then went back and edited so you might want to re-read just in case you missed the edits.

hi, i am on 5mg of Folic acid a day so that helps absorb? is it worth taking sleeping pills? l don't think my GP is bothered really, it was another one that set the regime, why is it so inconsistent?

Gambit62Administrator in reply to Jonan71

5mg sounds like you are being treated for folate deficiency as well as B12 deficiency. you shouldn't need any more.

Personally I wouldn't go for sleeping tablets. The problem may well go away as your body starts to get the B12 it needs.

Suggest you keep a diary to monitor how things are going

Jonan71 in reply to Gambit62


yes my folate was low too so l am trying to read up on all these things and it says low b12 can cause insomnia so have decided to steer clear of tabs. Other symptoms i'm getting are itchy skin and reflux at night which is due to acid which maybe causing me not to absorb b12 from diet? So i am going to keep a diary and keep bugging the doctor and go with someone to back me up. ln the mean time i will top up b12 and other vitamins to raise my melatonin. Do you use lots of things to top up or just one? How often do you gets jabs from your GP?

Gambit62Administrator in reply to Jonan71

B12 requires a certain amount of acidity to be absorbed - much more likely that the reflux is due to lowered acidity - the symptoms are pretty similar and unfortunately low acidity is often labelled as 'high acidity and treated with anti-acids and PP!s which just make the problem worse.

Get jabs from GP once aevery 3 months but only really go back to keep it on my record. I use a whole range of nasal sprays (hydroxo and methyl of different strenghts), some adenosyl sublingual tabs and also do some subQ injections - particularly if I know I'm going to have a stressful or very active day. I'm at the very high end of need though - notice my symptoms come back within 24 hours.

OK well not sure how much need I have but didn't feel like I do now when I was on the loading doses. I was sceptical and wanted to give it time but I would say symptoms were bad after 1-2 weeks after. My level was 150 when I was tested. Is it worth taking B6 and melatonin to get my sleep better?

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