Vitamin B12 or folate deficiency anaemia 

Introduction 

Vitamin B12 or folate deficiency anaemia can cause the body to produce abnormally large red blood cells  

Vitamin B12 or B9 (commonly called folate) deficiency anaemia occurs when a lack of vitamin B12 or folate causes the body to produce abnormally large red blood cells that cannot function properly.

Red blood cells carry oxygen around the body using a substance called haemoglobin.

Anaemia is the general term for having either fewer red blood cells than normal or having an abnormally low amount of haemoglobin in each red blood cell.

There are several different types of anaemia, and each one has a different cause. For example, a common form of anaemia is iron deficiency anaemia, which occurs when the body does not contain enough iron.

This topic focuses on anaemia caused by a lack of vitamin B12 or folate in the body.

Signs and symptoms

Vitamin B12 and folate perform several important functions in the body, including keeping the nervous system healthy.

A deficiency in either of these vitamins can cause a wide range of problems, including:

Some of these problems can also occur if you have a deficiency in vitamin B12 or folate, but do not have anaemia.

Read more about the symptoms of vitamin B12 deficiency or folate deficiency anaemia.

When to see your GP

You should see your GP if you think you may have a vitamin B12 or folate deficiency. These conditions can often be diagnosed based on your symptoms and the results of a blood test.

It's important for vitamin B12 or folate deficiency anaemia to be diagnosed and treated as soon as possible because, although many of the symptoms will improve with treatment, some problems caused by the condition can be irreversible.

Read more about diagnosing vitamin B12 or folate deficiency anaemia.

What can cause a vitamin B12 or folate deficiency?

There are a number of problems that can lead to a vitamin B12 or folate deficiency, including:

  • pernicious anaemia  where your immune system attacks healthy cells in your stomach, preventing your body from absorbing vitamin B12 from the food you eat; this is the most common cause of vitamin B12 deficiency in the UK.
  • a lack of these vitamins in your diet  this is uncommon, but can occur if you have a vegan diet, follow a fad diet or have a generally poor diet for a long time
  • medication – certain medications, including anticonvulsants and proton pump inhibitors (PPIs), can affect how much of these vitamins your body absorbs 

Both vitamin B12 deficiency and folate deficiency are more common in older people, affecting around 1 in 10 people aged 75 or over, and 1 in 20 people aged 65 to 74.

Read more about the causes of vitamin B12 or folate deficiency anaemia.

How vitamin B12 or folate deficiency anaemia is treated

Most cases of vitamin B12 and folate deficiency can be easily treated with injections or tablets to replace the vitamin you are deficient in.

Vitamin B12 supplements are usually given by injection at first. Then, depending on whether your B12 deficiency is related to your diet, you will either require B12 tablets between meals or regular injections. These treatments may be needed for the rest of your life.

Folic acid tablets are used to restore folate levels. These usually need to be taken for four months.

In some cases, improving your diet can help treat the condition and prevent it recurring. Vitamin B12 is found in meat, fish, eggs, dairy products, yeast extract (such as Marmite) and specially fortified foods. The best sources of folate include green vegetables such as broccoli, Brussels sprouts and peas.

Read more about treating vitamin B12 or folate deficiency.

Further problems

Although it is uncommon, vitamin B12 or folate deficiency (with or without anaemia) can lead to complications, particularly if you've been deficient in vitamin B12 or folate for some time.

Potential complications can include problems with the nervous system, temporary infertility, heart conditions, pregnancy complications and birth defects.  

Some complications will improve with appropriate treatment, but others  such as problems with the nervous system – can be permanent. 

Read more about the complications of vitamin B12 or folate deficiency anaemia.

Page last reviewed: 21/05/2014

Next review due: 21/05/2016

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Comments

The 100 comments posted are personal views. Any information they give has not been checked and may not be accurate.

CaiitlinMM said on 18 October 2014

hi everyone.

i've just joined NHS Choices. been reading all the comments on b12 deficiency on here. thank you Fidegety et al for the invaluable contributions. i'm much wiser.

someone has mentioned that it's possible to get Vit B injections over the counter. could anyone tell how/where? i've just phoned Boots Pharm. & they say it's by prescript only. because i made the suggestion to my GP, he's said 'NO' take it orally. my mum had PA.

i've been collapsing, breathless etc. my memory is becoming dangeriously bad - at my wits end?

with thanks

cait

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Fidgety said on 17 September 2014

There is a new research paper out in the BMJ (British Medical Journal) that is shedding a lot of light on the problems surrounding b12 deficiency. The publication is read by most medical professionals and would be of interest to even those at NHS Choices - however it should be worth the while of patients to draw their doctor's attention to it.
http://www.bmj.com/content/349/bmj.g5226/rapid-responses

I think you will have to copy and paste the link.

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Fidgety said on 11 September 2014

There is a new website that gives some interesting background information on b12 deficiency which patients may find interesting.www.vitaminb12deficiencyworldwide.com

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cabernet said on 28 May 2014

I have been having B12 injections for 5 years. My GP was treating me for Depression with anti-depressants, I was not getting any better.
I asked my GP to give me a B12 test and that's when the B12 deficiency showed up, it didn't show up on my FBC and that's why my GP was treating me for depression as my symptoms were fatigue and depression. I lost my job in the NHS for having to much time off work sick, as it took to long to be detected.
Dr Chandy a GP who has been studying B12 deficiency for about 25 years will tell you it does not always show up on the FBC, you will find him on youtube.
Its about time they gave everyone a B12 test with the FBC, I might not have lost my job and people would not have to suffer in their lives.

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anna_vw1 said on 27 May 2014

Okay, I've had iron deficiency anaemia 3 times before and I really think I'm anaemic again, this is all within 5 years. This time I'm finding it hard to be a coincidence and was wondering if there could be anything causing it? I'm 17, so it's unlikely to be PA or B12 deficiency from what I've read since they likely occur in people older than me. I've had menorrhagia but now I'm on the pill and don't get any bleeding at all. If anyone can put my mind at ease before I go visit my GP it would be very appreciated

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sonia68 said on 23 May 2014

I also have been diagnosed with pa and have been having 3 mthly injections but am 6 wks away from getting next injection and am really suffering with breathlessness, fatigue, sweating, unable to walk any distance due to weakness in upper legs/buttocks. Been to drs and had blood taken and say b12 levels normal! Told dr these are same symptoms as when was diagnosed but just aren't listening! Back to drs and now testing for vitamin d levels. My life is on hold now as cant do anything without suffering!

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Madcatlady04 said on 22 May 2014

Hi hopefully somebody can answer my question. I have been having vitamin b12 injections since last year. I have just had another blood test and today I had a call from my doctor telling me to pick up a prescription for folic acid. Does this now mean I don't need the b12 injections ??
Confused
Thank you for any help given

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wedgewood said on 25 March 2014

I wish to thank "Fidgety" from the bottom of my heart. His information is invaluable! Many many thanks and keep up supplying us with your information!

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holly bouquet said on 16 March 2014

hi. i was diagnosed early last year with pa. i suffer terribly now with pain in my lower back and hips in particular. i sleep on my back for comfort and getting off to sleep. when i roll onto my sides the pain is almost unbearable. i actually have been penalised at work for taking 1hr off work for three weeks to receive my first 3 jabs. the rest i took(and still take) out of working hours. are they allowed to do this? i am a 44yr old female working in a warehouse. my duties include unloading trailers in goods in. i get insomnia after about a month of having jabs and now get a lot of acid indigestion.i eat fairly healthily and cook most food myself and eat a lot of greens.
any advice,suggestions greatly appreciated.

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Dovechick said on 22 February 2014

Firstly, I disagree with the statement that Pernicious Anaemia is the cause of B12 deficiency, it is actually the other way round. B12 deficiency causes PA. But there are many people who suffer many symptoms of B12 deficiency before, if ever, they develop PA.
Secondly, nowhere in the article are the levels that the NHS doctors consider to be normal. For everyone's information the 'normal' range is somewhere between 150 and 900 ng/L. However there are many people out there who suffer neurological symptoms, skin problems, fatigue and many other symptoms whose levels are much higher than the baseline. To catch all those people suffering from B12 deficiency patients with a serum B12 level of less than 500ng/L should be treated with this harmless and beneficial vitamin. There are many reasons why the serum B12 test is not helpful, unfortunately most NHS doctors are not aware of these facts.

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Charlotte17 said on 18 February 2014

As much as this is common in older people. It can also run in the family myself (22) and both my sisters (24) & (26) all have b12 deficiency. I started with weekly injections than fortnightly and now every single month. I was so tired all the time and had numbness in my fingers / clumsy etc but put this down to life style. If you ever experience serious tiredness go and get tested the injections make you feel better in a matter of weeks.

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Clive H said on 13 February 2014

The standard treatment for Pernicious Anaemia three monthly injections of of HydroxoCobalamin (one form of vitamin B12).

For many people this is not frequent enough to deal with all the symptoms and to reverse symptoms such as peripheral nerve damage.

I have been diagnosed fairly recently and my doctor has agreed to start with monthly injections and reduce the frequency if it looks as if everything is well under control.

This is a much better approach than starting with a three monthly interval and the patient than having to fight for more frequent injections.

The cost of the drug is insignificant ($36 for one years treatment states, I do not have the figure for the UK.) The main cost to the NHS is actually carrying out the injections. However since this is an intramuscular injection would be very easy to teach patients to self inject, or to treat a willing partner to carry out the injections. In my case my wife who was a nurse carries out injections for me and I will get her to teach me to do so.

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Clive H said on 13 February 2014

While the description above does mention Pernicious Anaemia, does not mention that this condition prevents the absorption of B12 in the gut and that therefore it needs to be treated by B12 injections.

I also believe from my research that the frequency quoted (1in 10,000) is a significant underestimate caused by frequent misdiagnosis of the condition. This is partly because the symptoms are so diverse that is very easy to return an alternative diagnosis.

I was extremely lucky that my condition was diagnosed by my GP quite early, but this was the result of a routine blood test reaching age 60. The results mentioned "abnormal as expected" and when I went to see my GP he realised what the problem was.

Nevertheless I have suffered peripheral nerve damage which causes my fingers and toes to be numb, making my typing much less accurate, and causing me to be clumsy and to stumble, particularly in the dark. I'm informed that this condition should be reversed now that I'm taking B12 injections, that this might take up to 24 months.

One might consider partial dislocation of the shoulder not to be is a symptom of Pernicious Anaemia. This did however occur to me while ice dancing before I was diagnosed. I stumbled in a very simple part of the dance causing the dislocation. I am sure that this was due to the numb toes caught by Pernicious Anaemia.

One expert in Pernicious Anaemia B12 deficiency in the United States who works in an accident and emergency department tests all patients presenting with confusion, falling, peripheral numbness and a number of other symptoms or B12 levels. He is finding that some 25% of people presenting at accident emergency suffer from B12 deficiency (not all caused by Pernicious Anaemia). He estimates saving to the US health budget of correct diagnosis of B12 deficiency would amount to some $56 billion. Presumably a proportionate figure would apply in the UK

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craiginderbyshire said on 20 January 2014

The nhs website do's not give the full range of symtoms you get from this condition the full list can be found http://www.b12deficiency.info/signs-and-symptoms.html

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Boybilly55 said on 19 January 2014

Great article. I, personally have been tired, lethargic and short of breath. My doctor put this down to the increase of my meds for RLS. After since having second lot of blood tests, I received a letter informing me that my folate level was low, and enclosed in the letter was a prescription for folic acid tablets. Fingers crossed that this will do the job, as I can't sleep if I decrease my RLS meds.

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Fidgety said on 08 December 2013

Exeterboy - Both pernicious anaemia and b12 deficiency are potentially fatal if not treated correctly. There is a documentary on YT titled Diagnosing and Treating Vitamin B12 Deficiency which explains most things. On the opening titles it states 'pernicious with or without anemia.' Pernicious means 'fatal.' A three monthly injection may reverse blood abnormalities (the anaemia) but it will not stop deterioration of your nervous system and brain. It is not the anaemia that kills you, it is the lack of b12. The anaemia is very easily corrected (with small amounts of b12) the damage to the nervous system takes a lot more medication over a longer period. I hope this makes things a little clearer for you. If you think of the anaemia as being one 'possible' symptom of b12 deficiency and an aid to 'diagnosis' rather than being the main problem, then it helps get your head round it. A stand alone diagnosis of b12 deficiency is just as fatal as a diagnosis of pernicious anaemia.

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exeterboy44 said on 21 November 2013

I had a really friendly doctor in Exeter but sometimes I keep thinking that on occasions she jumps to different conclusions and wonder if I am sill have pernicious anaemia in my blood? Why did I think that well I had been told on different websites that they are 7 anaemia's out in the world today. It happen when I had came back off holiday when my doctor notice white patches on my face and she told me that I had something similar to what Michael Jackson had. Blood test results told me that I am not eating enough B12 but did not say I had pernicious anaemia only B12 deficiency and thyroid problems. The doctor at the hospital thinks but is not share that I had pernicious but anyway put me on 3 monthly injections for the B12 anyway just in case I had pernicious in my blood and not any other of the 7 anaemia's in my blood. So how do I know if I just have a B12 deficiency or a pernicious anaemia which pernicious anaemia is the only one that is a killer.
Richard Bealey
Exeter UK

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Mitch11 said on 19 November 2013

I've recently been diagnosed with pernicious anaemia and at age 40 it was a bit unexpected but suddenly all the strange symptoms I've been having made sense. I've experienced the full range of difficulties associated with this condition, many of which were alleviated after my loading doses of B12(sore back, cramps , pins & needles etc) Some symptoms still remain however and one in particular is causing me concern. It was the main reason why I approached my GP in the first place, despite many other symptoms. I have been suffering a change in my perception of smell which started off as a strong acrid smell which took the place of any strong smells present, this changed to a sickly sweet smell which made me naucious and has now transformed into a strong chemical smell a bit like chlorine bleach. I noticed this evening it intensifies when I bump my head as though the smell was released inside my head (sounds daft I know). I was just wondering whether anyone else with this dificiency also experienced this, my GP doesn't know an awful lot about pernicious anaemia and has been unable to answer many of my questions. Also, I'm coming up to my three month jab and for the past week I have been exhausted, foggy brained and quite down, is it possible to ask to get my B12 more frequently to avoid this, it really affects my life especially my performance at work, any advice would be much appreciated , thanks

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janst01 said on 07 October 2013

Quick update, had the injections and have to say it has helped tremendously. I no longer feel the need to sleep during the day and I actually find myself getting out of bed in the morning out of my own accord and not because I have to! I have had more energy and been able to do things around the house. On a really plus note I haven't been as irritable and pms wasn't half as bad as it has been. I do hope that this continues and will be noting how my body responds nearer the time of my 3 monthly boost and will update then. The injections for me were def worth it.

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Thumpa said on 28 September 2013

Hi, See the Pernicious Anaemia Forum above-right for help with your questions about B12 Deficiency
Best wishes, Thumpa

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MelodieJayne said on 24 September 2013

Hi, i'm 18 years old and i've just started university, about 6/7 months ago i was diagnosed with an under active thyroid and iron deficiency, the Doctor also said my Vitamin B12 was slightly low but said with the tablets for my other deficiencies it should level out, not long ago i went to have a short synacthen test (which came out fine) and more blood tests at a endocrinologist, she said that my B12 levels are still low so i've been requested to be put on B12 injections, also the Clinic found that my oestrogen levels are low too. I'm not sure why i have all these deficiencies and if they are linked or not but they do have an impact on my life. I feel constantly tired and lethargic, and really depressed and moody.

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vickymarc said on 14 September 2013

Hello. Im 27 and have anemia/b12 deficiency/folate deficiency since I was 22. It seems that this is no longer an 'old people's' issue. My palpitations are getting worse the olderi get which is scary at times. I am worried however that my GP has never actually looked into whyI have this. I get asked each time if im a vegetarian which I am not and thats about it. Im currently awaiting my blood results and feel absolutely rubbish. Its nice to know im not alone.

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shazzy b said on 07 September 2013

I get a blood test every 6 months to check for anemia and every time it comes back i end up on vitamin b12 my doctor who is very good was talking about me having to have the injections but he said i would be on them for life which i'm not keen on got to get bloods checked in 2 months again and i'm picking up every bug going at the moment getting very fed up now would just like some energy i do eat a healthy diet not very much red meat though i have just turned 40 and they say life begins well i'm still waiting .

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janst01 said on 31 August 2013

Im 42 and have been suffering from Ulcerative Colitis on and off for nearly 18 years. After using steroids for many of these years to control symptoms I was put onto Azathioprine back in February 2012. I thought that maybe the symptoms I was suffering was linked to taking this, I was sleeping sometimes as much as 15 hours a day, Id have 10 hours then about lunch time Id need to go back to bed again for hours. I sometimes don't have energy to get dressed, Im extremely moody and snappy, I have suffered from depression and thought it was because of this. I would forget half way through a conversation what I was saying or I would look at something and if it was blue, I would say purple, friends and family would tell me all the time that I had said the wrong word or wrong name for someone but in my head I thought Id said the right word. I suffer lots from cold sores in mouth and nose. I also perspire ridiculously from my face, this has got worse over past 6 months. I have never linked all these things before, I went to see Dr last week about the perspiring and was tested for menopause and thyroid probs initially. They all came back fine however as Im on azathioprine he had a look through my monthly blood screenings and found that my B12 levels meant I was deficient as well as in folic acid and had been for a long time, I wasn't absorbing it. I didn't think anything of it yesterday when he told me, I just thought it was a very general thing, however bored last night I looked on line to see what B12 deficiency was and it has now made me link all the symptoms together and I feel like Im not going mad, this might all be linked. I have my first injection next Friday, Im a bit scared due to what some people have written about side affects but anything that makes life more normal is worth a try. Im so glad we have web sites like this that can help and advise.

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miss_rachel said on 10 August 2013

Has anybody noticed they are more prone to muscle wear & tares with having folate deficiency? Beforehand I was fine when I exercised, now if I do it lightly for a short amount of time, even after stretching, (on the rare occasions I have a short energy burst) I'm ending up with really bad aches. I pulled my neck last night, which if that happens I recover within 20 minutes usually and I've woken up with it aching still.

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Leah1894 said on 30 July 2013

Loglau93- i am also 19 and i have the same condition. I was told i had this deficiency about a year ago. The symptoms started about 3 years ago, i started off being tired all of the time then due to tiredness i couldn't eat properly. I was also passing out at least 3 times a week at at random times, i was going back and forward to the doctors with stomach pains and vomiting but they couldn't find anything. One day it was really bad and i passed out 6 times in one day, this day i went straight to the nene doc and he told me that it just happens in teenagers sometimes, of course this i was not happy with. The last time i passed out was really bad at work i damaged my knee, it could have been worse (i worked in a chip shop not the best place to pass out). Since being told about the deficiency i have been having the injections to, my levels where dangerously low and i was told straight away that i would be on them for life & that it was uncommon in young people, but of course there was no explanation to why i have this deficiency! I too have been in hospital with severe stomach pains but only been treated for kidney or tract infections! I have also recently been told that i have IBS, i don't know anyone else at a young age with deficiency either. I hope it makes you feel better to know that your not the only one, after years of scans and tests the only answer i have to the stomach pains is IBS from reading everyones comments the bowel issues look as though they are related to the deficiency although i have never been told this by my doc. I also feel very weak and tired a couple of weeks before my injection is low and my moods change very quickly, i also have live folic acid does anyone else have that?

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Loglau93 said on 23 July 2013

I'm only 19 years old and was told I had this about 2 years ago, I've been on the B12 injections for almost 2 years now every three months.. They say its really unusual for someone of my age to have this and any question I ask they don't fully answer.. My b12 came back in the 'normal' range a few months back so they stopped my injection to have a blood test 3 months later to find out they were lower than ever.. I used to wake up crying cause I had no energy at all, I would blank out, go light headed and sleep most of the time...
So they said I need to stay on them for the rest of my life... Some say I have B12 deficiency and others say I have the pernicious anaemia so I don't know...


Since last yr I've been in amid out of hospital with severe stomach pains (unable to go toilet, then not being able to get off, feeling sick, unable to move) which they had me on morpheme it was that bad.. But then they'd send me home with no explanation... I was told 2 months ago I have IBS symptoms but I'm really unsure what to believe any more...

Anyone else had this at a young age?
Thanks.

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TerenceW said on 01 July 2013

In retrospect, my B12 problem started about 3 years ago when I started suffering mild anxiety. This progressed to the point when I began to truly believe I had a fatal illness, though I had no symptoms of anything. Then in March 2013 I had a bad viral infection and had trouble recovering. Nauseous, HUGE anxiety (same thing - sure I was seriously ill), occasional panic attacks, depression, lethargy, insomnia... I had a health check which fortunately included a B12 screening (I'm 71). Everything else was ok but the B12 was 'a little low'. I started on oral supplementation of 2000 mcg daily and the change was miraculous! Within days, I felt better than I had in years and I realise that I've probably been B12 deficient since a 13 month period of severe stress 4 years ago. Obviously I was more than 'a little' low, though my Doctor (who is actually very good) seems sceptical that it could have caused the problems I was suffering.

The point is, you might not have any of the 'classical' symptoms of B12 deficiency such as anaemia or tiredness at first, because it can cause such a huge variety of problems, several of them emotional/psychological which is how mine started - I had no other signs for 2 1/2 years.

B12 deficiency causes such awful symptoms that it ought really to be tested for in everybody over 50 - there are people who have been diagnosed as suffering dementia, MS, IBS, depression, anxiety and all sorts of other things, when all they needed was a boost to their B12 levels.

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julieandrea18 said on 27 May 2013

I usually feel unwell and lethargic about two weeks before my vitamin B12 injection is due & have tol the practice nurses and GP's this but will they listen !! No

why is it in the UK doctors don't listen to their patients ? Is it because they don't see us as individuals ? or is it that they've lost the ability to use their observational/ diagnostic skills and just follow the universal guidelines like mindless robots.
Patients are not stupid and it's about time doctors started to listen !!!!

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sleepylittle1 said on 22 May 2013

Has anyone been affected by taking PPI (reflux medicine) for more than a year and become B12/iron/magnesium deficient or have malabsorption issues ? Think I need to get tested but not sure what to ask for. Previous blood tests came back normal but that was a couple of years ago and I've got more run down since then.

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hh78 said on 16 April 2013

i was diagnosed with having pernicious anemia 12 years ago after suffering tiredness,ibs,palpitations and mouth sores i have been getting my injections every 3 months for 12 years,i changed doctors and he decided to stop my treatment so now i am really suffering get terrible fast heart rate i am so weak but the doctor wont put me back on treatment because apparently the b12 serum test is in range even though the test is inaccurate it only tests the whole of the b12 which most is floating around doing nothing not the b12 thats going into the cells to repair,the doctors here dont really know much about what this vitamin deficiency can do and i think alot are ignorant to it i am at my wits end to be put back on treatment and really suffering and all the doctor keeps doing is throwing antidepressants at me like they were sweets which i will not take instead of putting me back on a harmless life saving vitamin,it makes me mad when celebrities can have the injections to boost their energy levels anytime they want but yet people who really need it and could die from this deficiency are denied,doctors surgeries could save thousands in treating people by symptoms with this cheap vitamin instead of handing out dearer treatments like anti Ds which do nothing,and the every 3 months treatment is rubbish one size doesnt fit all,if my doctor doesnt put me back on my treatment which clearly states in the BNF guidlines which doctors dont seem to follow these days the injections are for life for pernicious anemia then i will have no choice but to self treat like millions of others who are in the same boat as me i am not having no doctor playing god with my health

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holliem said on 02 April 2013

Reading a lot of comments from people here that have B12 deficiency and also have stomach or bowel problems.

One possible underlying cause of B12 deficiency can be IBD (not IBS). It tends to present with any combination of abdominal pain, diarrhoea, constipation, and tiredness. In blood tests, it shows as low red cell count (iron-deficiency anaemia) and high white cell count (sign of infection). It's also known as Crohn's or Ulcerative Colitis and it runs in families. Doctors will often misdiagnose IBD, saying you have IBS, water infections, or just stress.

If you have B12 deficiency and also have stomach or bowel problems, you should get a test to rule out IBD.

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Fidgety said on 25 January 2013

A new video has been released that all medical professionals and patients should watch.
http://www.youtube.com/watch?feature=player_embedded&v=BvEizypoyO0

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Elea079 said on 20 December 2012

I have been suffering from tiredness ,pins and needles in my hands on waking and my periods messed up and what I believe to be arthritis in my hands and knees for years I have been diagnosed as depressed had an op on my knee told docs thought I was menopausal they done several test but failed to do b12 until a year ago then told me my red blood cells are enlarged because I drink to much of a weekend and that my kidney and bladder were struggling I recently had another b12 test and the doc told me that my red blood cells to large the same as last time but I now had elevated liver and kidneys which I didn't have before, have to go for another test Christmas eve think I'm celiac and b12 deficient with possible internal damage ( thanks docs for fobbing me off for years) I've had bowel probs for years they gave me barium enigma said there was nothing wron so been taking laxatives for 16years to go toilet wich is probably the cause as it can flush out the enzymes which break down your food and extract the b12 so I'm looking. Like a lifetime of irreparable damage and I'm only 39 injections here we come ( if only the docs had taken it more seriously and sorted me out 16 years ago

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Fidgety said on 16 December 2012

Cyanocobalamin used to be the form of b12 that was used in the UK up to the 1960s. The injections, because of their half life, were given once a month. They then moved on to hydroxocobalamin and gave them every 2 months. Then some bright spark decided we only needed them every 3 months.
Cyanocobalamin injection is still used in the US and they give it once a month - and I don't know any other country that would expect you to wait 3 months before giving you an injection with it. I'd phone the doctors, find out the pharmaceutical company that manufacture it, and phone them.
To buy cyanocobalamin injection in France costs about 35p per dose. Hardly breaking the NHS budget, are you. You need to phone up and be assertive. You need the name of the manufacturer and the product and to get the correct information. Restricting cyanocobalamin like this should not be happening.

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x Sophie x said on 04 December 2012

Hello I was diagnosed with pernicious anemia about 5 months ago, after doctors not picking it up for 5years as my full blood could was normal but I inherited it from my mother so must of had it since a baby I am now 21years old. I had 3 injections of hydroxocobalamin but had a reaction to it, I then had to go to a specialist to see what I could do she then put me on cyanocobalamin a month later I had 5 of these injections I felt great for 3 weeks and as it got to the 4th week I just felt the exact same as before any medication, I went to the doctors he said it is unlikely it has gone down as it can dip I have not felt better since which has been 2months, I had my top up injection yesterday and still have not found any improvement and after reading on here that cyanocobalamin doesn't stay in your body as long as hydroxocobalamin, I rung the doctors and spoke to one about it which she dismissed it completely and said I am on the right dosage of 1 every 3 months now. I am going to wait till the end of the week if I don't feel any improvement I will be making an appointment I just hope they do something as feeling the way I do effects my life as I'm always tired and fatigued and for a 21 year old this is certainly not normal I don't understand why I cant have it every month as it makes me feel active and normal but I don't know how I can get them to help me as they seem adamant that I should only have it every 3 months even though it isn't doing much help. I know it may hurt the NHS budget but at the end of the day people's health should be the main priority!

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Fidgety said on 21 November 2012

Another quick word on Recommended Daily Allowances.
Vitamin b12 is slightly different to many others in that when you take in b12 through diet any amount that is not utilised is stored in the liver. So, your body needs 1.5mcgs per day put you take in 50 mcgs and the excess 48.5 mcgs goes into your liver for future use. Of course this means that the RDA doesn't actually need to be consumed every day. Figures vary enormously when it comes to how long b12 is stored in the liver for. Some say 6 months, some say as long as 7 years. What is certain though is that it is stored. So, if you eat a normal diet or even have a restricted diet, as long as you take in more than the recommended daily allowance (tiny amount) you shouldn't actually become deficient unless you have a malabsorption problem. Theoretically, someone with a normally functioning system should be able to go at least 6 months (the lowest storage time given) without taking in any b12 at all. Again, this all goes to prove that when doctors tell someone they are dietary deficient they would need to be talking to a patient with an extremely restricted diet that is way beyond the norm.

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Fidgety said on 07 November 2012

It may also help to know about the test that is used to measure b12 in the UK. This is called the serum b12 test. What it measures is the total amount of b12 in the blood stream. When it comes to both diagnosis and treatment the word 'total' is important. This means that it measures both haptocorrin and holotranscobalamin. Haptocorrin is what they call 'inactive' b12 - this means the body cannot utilise it. Haptocorrin makes up a minimum of 20% of your 'total' serum b12 level. This means that someone may get a recorded b12 level that is in the 'normal' range, but the haptocorrin hasn't been taken into account and so their level would actually be into the deficient range. The amount of haptocorrin in a serum b12 test can be as high as 80%. Hence, many people get a reading that doctors interpret as being normal when they are in fact deficient because the haptocorrin is not taken into consideration. Again, after patients commence treatment and get a b12 reading that is 'high' some people are told it is 'too' high, but the highest level reading is only meant for people who may have other illnesses and not those that have had b12 treatment where it should be considered correct that levels are pushed out of range. Also, the serum b12 test only measures b12 in the blood - if the problem is malabsorption in the stomach, a high b12 level in the blood is not a good indicator that it is working at cellular level.
As I stated below with the amounts of b12 in food, you can see that even eating a food high in b12 can push up a serum b12 level - higher in some cases that the prescribed tablets used to treat the deficiency. But if the problem is malabsorption, which most are, it means virtually nothing other than you have b12 in your blood and that is what the serum b12 test will measure. If you are going for a b12 test, try not to eat a food high in b12 prior to going as it will give a false high reading.

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Fidgety said on 01 November 2012

It might also be worth mentioning, to those that have been put on 50mcg tablets for b12 treatment, information relating to daily requirements and allowances.
Recommended daily allowances of b12 vary. I believe the EU recommends 1 microgramme of b12. NHS Choices, I think, recommends 1.5 microgrammes. This means that in order for a patient to have a dietary deficiency (as opposed to malabsorption) their b12 intake through diet must be less than these amounts. Please note that we are talking microgrammes here which is 1,000 times less than 1 milligramme.
The foods which contain the highest levels of b12 are shellfish. Clams and mussels come top of the list with 98.9 microgrammes per 100gm serving for clams and mussels slightly lower. Not a staple for most so the next best thing is lambs' liver which contains 72.85 microgrammes per 100gm serving. On the other end of the scale an egg has 0.49 microgrammes. A pot of yoghurt 1.38 microgrammes. Four oz of shrimps 1.69 microgrammes.
You do also tend to obtain b12 through fortified foods.
If you take into consideration that the RDA is between 1 to 1.5microgrammes per day, you can see how difficult it is to become dietary deficient.
If you have been put on cyancobalamin 50mcg tablets but have a diet that you would consider 'normal' then it may well be worth mentioning it to your GP and showing him the NHS Choices RDA page as your problem would indicate malabsorption and the risks of not getting the correct dose of b12 far outweigh any other.
It might also be worth noting that the Department of Health MPig section (no, I'm not joking) are interested to hear from people who are not dietry deficient and have been put on low dose oral b12. and they do need evidential cases in order to establish the facts.

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Fidgety said on 15 October 2012

To all those that are wondering why their symptoms return within the 3 month period, if you read the top section it says this 'At first you will have injections every other day for two weeks, or until your symptoms have stopped improving.' This doesn't mean injections should stop because your symptoms are improving or because your blood serum levels are into the normal range - it means they should be continued every other day until you stop seeing any improvement. However most doctors seem to overlook this and limit patients treatment letting their condition continue to deteriorate. In mainland Europe the standard treatment is one injection every month and they can buy b12 injections over the counter for about 40p a shot if they need it. The UK treatment for b12 deficient patients is one of the worst in the world. Maybe you would be as well to print off the NHS Choices page and underline the section about every other day injections. Not that it will do much good in many cases because doctors refuse to acknowledge this illness causes neurological symptoms - even though it has been well documented for nearly 200 years.

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Cherylmx said on 14 October 2012

I am 41 yrs old was diagnosed with this deficiency a year ago and have to have folic acid tabs daily and B12 injection every 12 weeks. It is the build up to the last week my jab is due that i start to feel lethargic, my body is aching and i sometimes get a tingly feeling in my legs and hands and feel very dehydrated. With this feeling i have to sit down as standing up i become very wobbly on my feet. Sometime this passes quickly once i have had some sugar and liquid in my body and then other times it can take hours for my body to feel unshaky.
I have just been to my GP as he thinks it is highly unlikely that it is the lack of B12 that is causing this tingling feeling and will have to have tests on other things.
Does anyone feel like i do on the build up to their 12 week jab??

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Jane68 said on 10 October 2012

Hi
Ive just finished the initia course of B12 and am now moving onto 12 weekly ones, however i do feel a bit better i dont have the joint pain, blurry eyes, breathless but all not as bad as before and am still tired but not to the point that i was before. Im finding this all very annoying as i was fit and active and always have been after being in the Army for 10 years and my current job is also quite active, but i must admit im struggling,
I have today just also had blood tests for Vitamin D and to check the B12 levels and another to check antibodies.
I panicked a bit Saturday as i was exhausted, all i wanted to do was sleep, i also got my friend back the numb tingling sore patches again this one was on my foot and ankle, my doctor said my levels were very low hence why i had to have so many injections, but i am wondering if i need more because i dont feel back to myself as yet, im still taking folic acid tablets as well.
How do people get on at work with the B12 deficiency it obviously does effect your everyday life to a point im really worried as i work shifts and was struggling before the onset of this and have struggled big time. How does it effect everyone on a day to day basis am i the only one who feels like this
thanks xxx

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justwonderwatsup said on 27 September 2012

I have just been diagnosed with Macrocytic Anemia and have to take 5mg folic acid a day, I have had the symtoms associated with it for many years on and off and it has always been blamed on stress/anxiety/depression in the past, I am 39 yrs old am a smoker but do not drink alcohol my diet is fine too, I have always suffered with IBS since my late teens which has been very painful at times during my 4 full term pregnancys I always had to take iron supplements

I am just wondering given all the above details what on earth may be the cause of it as I a really worried and scared

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Jane68 said on 26 September 2012

I hadnt felt right for about 18 mths /2yrs, i told my doctor he just put it down to lifesyle and shifts, im 44 generally fit and healthy, anyway i had been getting these sore numb patches, then got shingles, about a month after the shingles these numb sore patches got worse more painful had blurry eyes when i was tired, was sleeping for 12 hours having to go back to bed a couple of hours later, anyway went back to my GP about the numb patches he run some blood tests, and i have been diagnosed with a B12 and folate deficiency, i now have folic acid tablets to take every day and and i have B12 injections every other day for the next two weeks and then 3 monthly. I had my first injection today and must admit i havent had an urge to run off to bed 2 hours after i got up however still tired. i have to have another blood test for antibodies next week, and to check vitamin D, so i dont know how this happened, becasue although i work shifts i eat plenty of foods that contain B12 and folates. So i will see how things go

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Nitty Macca said on 05 August 2012

Hi I was told I had PA and vitamin B12 deficiency last year I am 47 I have injections every 3 months but after 2 months them horrid pains in the arms, shoulders all joints, hips, in the tips of my fingers numbness in my legs and the muscles in my arms are the worst cant wait to get the doc's for my injection on the 10th of Aug at least I will feel great for 2 months lol Nat x

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misssarahss said on 18 July 2012

Hello i am 23 and was very active until the last year i just ran out of energy and passion. i have a healthy diet, and have been told a month ago i have a b12 deficiency. I had my first b12 injection today and have my next b12 injection in three months. as soon as i had the injection it made me feel dizzy but i felt great full of energy but this only lasted an hour or so. i now feel drained and still mood swings, as well as my hand still cramping up. is this the injection making me feel full of energy or just me thinking the injection has done something?? how long will i notice a change in my mood and energy and how long will it last until my next injection. my doctor hasn't told me anything about this and the nurse briefly filled me in today, explaining i may need to have these top up injections for the rest of my life. is this definite?

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Fidgety said on 17 June 2012

The information given here is out of date and misleading.
B12 deficiency without anaemia is just as fatal as with it.
BNF guidelines state that maintenance treatment should be by injection, not tablets.
It also states that the frequency of treatment should be dependant on symptoms - 1 x 3 monthly injection does not suit all. Some need injections every other day until further improvement.
Also the most used b12 serum test used to identify b12 levels is not accurate as it measures complete b12. This includes (up to 80%) of inactive b12 which is not available for the body to use. The minimum amount of inactive in any test is 20% - therefore by definition all test results should be reduced by 20% just to get a vaguely accurate idea of identifying a deficiency.
Many patients report symptoms remaining after treatment or before the next treatment is due. This is because Drs are not following the correct guidance. Further research needs to be done by sufferers which is widely available and from other countries.
You cannot overdose on b12, something patients seem to be told can happen by GPs. It is a water soluble vitamin and has been declared safe by WHO.
If you are in Scotland there are currently NO medical guidelines for treating B12 deficiency.

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toffeeapple said on 13 June 2012

help just been told have b12 ,went to doctors thought i was going threw the change but no now told need 12 injections plus iron tablets and the doc wants to examine my bowel even tho i have never had a problem with it im as regular as clock work no pain no blood no swelling or bloating so why does he want to prod about im scared ... im 46 yrs old

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David_E_B said on 08 June 2012

I was diagnosed as having B12 deficiency in 2007 and after an initial intensive treatment , I now have an injection every three months. This is due to the fact that I am unable to extract and store B12 from my intake from food, so supplements in tablet form would prove ineffective.

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nbbeds said on 29 May 2012

In response to Carla00 - I have also had lots of fatigue and stomach problems leading up to my diagnosis of B12 deficiency (not yet on treatment). Years of worsening IBS and intolerance to wheat/gluten (but not coeliac) and permanently washed out and tired. I would recommend getting in contact with the Pernicious Anaemia Society based in Bridgend, S Wales as there is a very good forum full of other people with lots of useful experiences and expertise to compare and also the b12d.org website and lots of checklists explaining causes and impact of B12 def. Definitely worth you asking for more regular injections (rather than tablets) if your symptoms have got worse. Good luck!

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lamb424 said on 22 May 2012

After being diagnosed with pernicious anemia a couple of weeks ago I have done a lot of research on the subject. There is a book out called “Could It Be B12” available from Amazon.com that is a real eye opener. My doctor is treating my B12 deficiency very aggressively; I inject myself with 1000 MCG/ML every day for about one month. After that it will be weekly for the next month and then once per month maintenance shots. Pernicious anemia runs in my family and I have some family members who have a shot twice per month maintenance but most are on the monthly maintenance shots. When you have a shot of B12, it is decreased by about 80% by your kidneys in the first 24 hours. Everything I have read says that a normal maintenance shot of once per month is minimum to reduce the side effects of PA.

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carla00 said on 11 May 2012

I am 23, I went to the doctors in January in relation to stomach problems trying to find out about coeliac/ibs or some sort of answer. Had a blood test which came back that my iron was low and my B12 was really low at 89. I then had to have a second blood test and 6 shots of B12 within 2 weeks to boost it back up again. It was only a short while after the injections kicked in and I felt "ok" again that I realised how bad I was actually feeling, no energy, no effort, completely drained etc etc etc which I put down to laziness! The past week or so i've found myself slowly but surely starting to feel all of those symptoms again. The second blood test came back saying that i dont have pernicious anaemia (meaning I wouldn't need the three monthly injections) however, on checking my calendar I see its exactly 11 weeks since I had my last B12 shot. I feel it would be wrong to go back to the doctors and try to challenge by blood test results? Therefore would B12 supplements suffice?
On looking online i see that a symptom of low B12 can be diarrhoea, has anyone else had this?

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carla00 said on 11 May 2012

I am 23, I went to the doctors in January in relation to stomach problems trying to find out about coeliac/ibs or some sort of answer. Had a blood test which came back that my iron was low and my B12 was really low at 89. I then had to have a second blood test and 6 shots of B12 within 2 weeks to boost it back up again. It was only a short while after the injections kicked in and I felt "ok" again that I realised how bad I was actually feeling, no energy, no effort, completely drained etc etc etc which I put down to laziness! The past week or so i've found myself slowly but surely starting to feel all of those symptoms again. The second blood test came back saying that i DONT have pernicious anaemia (meaning I wouldn't need the three monthly injections) however, on checking my calendar I see its exactly 11 weeks since I had my last B12 shot. I feel it would be wrong to go back to the doctors and try to challenge by blood test results? Therefore would B12 supplements suffice?
On looking online i see that a symptom of low B12 can be diarrhoea, has anyone else had this?

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amyjosephine said on 09 May 2012

This is for Rudie123. I wonder if your doctor has considered testing you for polymyalgia rheumatica. The symptoms you describe are very similar to those my mum had. She ached so much and eventually could hardly move. Her hair combed out easily and her skin brushed off. She had eye and headaches. She was tested and found to have polymyalgia and temporal artiritis, for which she was prescribed prednisolone. She was on a high dose at first but it was then slowly reduced and lived on that for many years before her eventual death. Her temporal artirits, untreated, would apparently have quickly left her blind. I saw your comment and have joined this forum just to write this to you in case it helps. Good luck.
amyjosephine

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rudie123 said on 02 May 2012

I am 43 years old and have suffered from low iron in the past from heavy periods. But I have now noticed it has yet taken its toll with my arm aches when lifting also headaches and pains in joints. finger nails keeps breaking, eye lashes fallen off and last of all hair finning and fallen out from sides.

can anyone please advise me. I am now taking liquid iron and eating lots fruit, veg, iron foods.

Thank you. :0)

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ILoveAloe said on 30 April 2012

Oh guys, I have been reading your comments as I looked up B12 for some research. I really feel for you all. I started drinking aloe vera gel (it has to be nearly 100% aloe vera gel - the inner leaf) 3 months ago and I have never felt so well in my life. I'm 48 and felt every minute of it, now I have a spring in my step, a smile on my face and am loving life again. Try it, I promise you won't regret it but remember it can take a while for you to notice a significant difference although with me it was only about 3 weeks. Good luck!

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rolocookie said on 18 April 2012

I am 26 and been having having some problems for a while. The last coupld of blood tests said i had a B12 deficency and previous said i was borderline. I am constantly tired and my job of being in the Army is really taking its toll. But i have not been offerd any injections or advice by the doctor. Can anyone help?

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charlottelucinda said on 10 April 2012

I went to the doctor about a iron deficiency (i had been on the tablets 9 months and wanted to come off) the doc said i should have come off ages ago- it should be fine we'll just run a blood test!
after repeating the blood test twice they told me that i had low folate and b12. my diet could be healthier, like most people, but there isn't anything i am lacking in.
i have also been trying to get 'healthy' as i go to physio because i am hypermobile and my knees are in the wrong place and suffer with chronic daily pain from these.
at the time when i went to the doctors i was feeling 'okay' for me! ive been having the b12 injections for a couple of weeks and i am on folate supplements. hoewver, i have never felt so tired and poorly as i do right now! got so much to get on with and less energy than i had when i first went to the doctors!
i am only 19 and i have got so many bloming problems, wish i never asked now, feeling really naf and wondering if anyone else felt like this when they first started treatment.
i am also waiting to see a tummy doc (forget the name) i think they will be looking at the cause of it as apparently its unusual to have both (unlike it says on this page)
due to bleeding when going to the toilet, they have said they also need to investigate the big C.
Trying to stay positive.

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cateyes said on 06 April 2012

hi i was diagnosed with b12 last year, have my injecions ever 3 months i was wounding if any one as give up work becouse of the b12 sometimes find very heard to cope when working near the time for my next one. thanks.

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Rainy days said on 17 March 2012

To Pharaoh1 .... Thanks for your comment, I've not had my thyroid checked for a while. Thanks, its worthwhile asking my gp. Anything to feel better! My GP suggested I try antidepressants?? Maybe he thinks its physiological?! Definitely not.

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pharoah1 said on 16 March 2012

to Rainy Days - when I had my blood test for B12 deficiency the B12 element was 114 - should be between 160 to 500. The comments from the Lab on the result suggested starting B12 replacement therapy. The Folate was fine. Have you had your thyroid checked? It can cause lots of problems similar to B12 deficiency.

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Rainy days said on 16 March 2012

What level does your b12 need to be to require b12 injections? I was "borderline" in December (194) and now just got results and Im 227 which is above normal (220??). I have all the symptoms of b12 deficiency but my "results" seems to say differently. I was diagnosed with coeliac disease almost 14 years ago and always put my symptoms down to having this. As time goes by I'm convinced this is what's wrong but my results say otherwise?? I'm so frustrated trying to get someone to listen to me, does anyone have any comments or personal experience on this??

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bevie43 said on 13 March 2012

hi im a 44 yr old female for around ten years now i have suffered with pains in my joints pins and needles tireness lack of energy feeling like im walking in thick mud headaches ive been pasted from piller to post like many of you subjected to blood tests many times all clear then i started losing the stength in my arms and hands just cant do the simple jobs then i went to a new gp in my surgery told her everything thats been going on orered blood test one of which was b12 never tested for this well it came back that there is a problem after seaching the net now have the answers to alot of my problems been told its your age its your job its fms so thanks to a brillent caring doc i can hopefully get my life back on track i do worry that there is nerve demange but thats another bridge i will have to cross i guess thanks you for taking the time to resd this

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nade25 said on 08 March 2012

i was diagnosed with pa just over a month ago. i was put on tablets and have to go back in a month for repeat bloods to see if i need to go onto injections. i am not feeloing ant different on the tablets, if anything i feel worse.also on vit d supplements as was very low as well. i get a lot of problems with my back, neck shoulders and especially my legs. i am 22. can anyone offer any advice

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jobie89 said on 28 February 2012

I was diagnosed with vitamin b12 defficiency a few weeks ago. I am 23 and was concerned when I kept getting really bad shakes this would be throughout my whole body. I was seeing my doctor for other reasons but thought it was worth mentioning, after having 2 blood tests I was diagnosed with this. I am currently having my injections and hope they make me feel better in myself, would be good to not have the shakes anymore and to not feel so tired all the time :(. I have found this difficiency really takes a toll on me when I generally get ill, like a simple cold will last longer and exhaust me. Hope this gets better soon...

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pharoah1 said on 13 February 2012

re student41's comments - I have just been diagnosed with pernicious anaemia and just started injections. I also have an underactive thyroid which kicked up last summer and I went through a miserable number of months with very painful joints (all of them) but after increasing my thyroxine the joint pain cleared up. It's amazing just how many things the thyroid affects. If you have a thyroid problem then you are more likely to haver pernicious anaemia, and it also runs in families. I have one sister with pernicious anaemia and one with an underactive thyroid - and guess who's the unlucky sibling who gets to have both!! At present all my days are feeling "washed out" days. Doc tells me it could take 2/3 months for the B12 to kick in - it depends on how quickly your bone marrow starts producing.

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Kritzy said on 13 February 2012

2 yrs. ago I had an autoimmune disorder that seems to have fooled Dr's and we have been searching since then to find the answers. I just had my 1st visit with an infectious disease Dr. and he made lab orders that have not been looked into until now. One of the orders was for B12. With searching, on the Internet I feel B12 deficiency is the closest we can get to the bottom of my issues. I have been misdiagnosed previously and every Dr. came back to say they just could not find an answer to my issues. Neuropathy, fatigue, pain, numbness. Right now the pain is severe in my hands & feet, my steadiness to stand up straight and to walk is compromised, my strength is diminishing. I use to workout with my husband 2 hrs. a day. Now I sit in the gym to wait for him to finish and weep inside because I remember when I use to enjoy being active. We hope for an official diagnosis this coming Thursday. If I have B12 deficiency how long will it take for injection therapy to take effect? I appreciate everybody and their input on this subject. Thanks.

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g force said on 07 February 2012

I am 36 years old. When I was a baby a had an intercuception which is a blockage of the bowel. I had to have a part of my bowel removed on 3 occasions, which has caused me to have a vitamin b12 deficiency. All my life i have suffered with being tired all the time, ive had depression most of my life, and in the last 2 years i was in and out of hospital having tests for stomach problems (diorhea) and (cramps). I feel like a walking waste of life, as i do not have any energy, even when i have my Vitamin b12 injections every 3 months. I have never really felt normal. I have lost a lot of jobs because of my lack of energy, and depression. I am 5 foot 8 tall and only weigh 8 stone, i have never been able to put on weight and yet i eat so much food all the time, it just seems to go straight through me. Does anyone have answers to how i can fix this, as i don't know how much more i can take of this lethargy and depression. I have been on B12 for 36 years, every 3 months. I am used to the bee sting injection and would have more of it if my doctor would let me, but they say that i have enough, and do not need anymore, but i think they may be fobbing me off. Please help!!!!!!!!!

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debi o said on 31 January 2012

i have just registered and having read Nikki 26th Jan post about coeliac and lack of energy thought maybe i could help. I was diagnosed at 40 with coeliac after 20 years of suffering lethargy stomach problems anemia anxiety depression and generally being unwell for what seemed to be most of my life!! i was diagnosed with ibs and given treatment for that, which made no difference. eventually afer much searching i came accross coeliac disease, had a simple blood test and it was confirmed. i then embarked on a gluten free diet which improved things, helped me put weight back on and gave me more energy.. i still struggled with my iron count and energy levels when a very good gp found my b12 levels to be very low and i started on injections 3 years ago. they started me on 3 monthly but this didnt help so they swapped me to monthly which improved things enormously, but on the third week i was finding the old problem of severe lethargy, ywwning all the time, generally feeling ill was back. so i am now on 3 weekly injections and have never felt better. I would say to anyone with these symptoms especially if you have been diagnosed with coeliac disease, to insist on regular injections and regular blood tests to keep a check on your iron b12 calcium in particular. At one point after having my regular injections my b12 levels went from very low to quite high..i felt great though, but my gp took me off the injections, and within 9 weeks (3 missed injections) i was straight back to lethargy, feeling ill, wanting to sleep all the time and not able to work. After another blood test the gp found my high levels had dropped drastically so i am now back on the b12 for life.

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Nicki Walker said on 26 January 2012

I was diagnosed with PA 7 years ago and then Coeliac Disease a year after. I have the B12 injections every 3 months and although I don't notice a big surge of energy I'm sure they are helping the lethargy and tiredness. However, over the last few months I have noticed that 2 weeks before my next injection I feel absolutely exhausted and have no energy whatsoever so wonder whether I will be able to have them more frequently. It's good to see that some people are already doing that so will definitely make an appointment with my Doctor before the next one. Also, my PA and CD were misdiagnosed for 20 years (thought it was IBS) and during that time I felt dreadful most of the time and also suffered from depression and am now wondering whether this has something to do with it and I'm worried there will be long-term damage. Does anyone know about this?

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studentgirl41 said on 19 January 2012

Hi All i am 41yrs old and have just had blood results back saying there is an issue with my vit b12 levels. Thing is yes i have the headaches, fatigue and diziness even when sat down, but my question to you all is have any of you had extremely painful joints too? as i do and i am to be honest worried! as i eat a balanced diet including meat, eggs and dairy products and love broccolli and peas which are high in vit b12. so i am very confused as to why i have this. I also used to exercise regularly for sometimes 2hrs a day or more now i can't even manage 30mins as i am in pain with my joints and along my clavical bones. To say i'm bemused is an understatement. Back at the dr's monday to find out whats what.

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EmilyJM said on 08 January 2012

Hi, I'm 21 and have been diagnosed with pernicious anaemia due to having crohn's disease. I have started the 2 week injections and feel even more tired and sick. Is this a normal reaction for the first few weeks? Thanks, Emily.

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mrmojo said on 20 December 2011

I have just finished my B12 loading injections (6 in 12 days!), but luckily (having read some of the comments below) have not had any problems from them.

Kevin -
I have similar 'pins and needles' symptoms in my feet (soles & toes) to yourself, but also all over a lot of the lower half of my body (calves, shins, knees, front of thighs. groin & buttocks to a lesser extent). Do you remember how long after starting your treatment your 'nerve' symptoms started to disapear. I'm worried that some or all of these will be permanent.

Thanks everyone for their comments - for someone recently diagnosed after having the rather worrying symptoms of PA, these individual experiences are very useful.

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Kevin henderson said on 24 October 2011

Regarding the nerve damage to your toes, I had very similar symptoms; in fact it was the feelings in my toes that helped me identify the problem. My wife found a web site which described the feeling as “walking in the snow with bare feet” I then went to the doctor who checked for B12 deficiency with the results proving positive. I had the pains in my feet for well over a year, however the pain disappeared following the B12 injections.

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5foot2woo said on 23 October 2011

Iam 38 and hav been having b12 injections 4 4years. They feel like beestings. I used 2 av them every 3 months but now av them everyy month as I was still feeling tired. When iam due 4 my jab I find my vision is weaker.

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5foot2woo said on 23 October 2011

Iam 38 and hav been having B12 injections for approx 4years now.(they do feel like bee stings but they r worth it). I used 2 hav them every 3 months but was still feeling tired so they were upped 2 every month. Much better now. When iam due 4 one now ,i find my vision is weaker. Not sure if there is any connection.

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janknox said on 19 October 2011

Hi My GP thought I had Temporal Artiritus as I had a lot of the sypmtoms. Blurred vision, headaches in my temples etc so treated with massive steroids 16 x 5mg for two days then 12, then 10 etc, which have now made my legs like Jelly and my toes numb with pins and needles all of the time. I am so tired I fall asleep when I sit for more than ten mins. Ive had the test for VB12 Deficiency but it did not show enlarged red cells but just borderline. Now on only 2 steriods a day. I still have some headaches and blurred vision and also horrible smell in my nose and cant taste food properly. GP decided I should have B12 injections to see if it helps. My concern is about the nerve damage to my toes. I have had this for 10 weeks now. Any info would be appreciated. Thanks

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Laura mitchinson said on 18 October 2011

@Kevin henderson
i had exactly the same thing with my B12 injections i felt tired after 9 weeks and after that i went down hill quickly suffering from confsion and extreme tiredness. I went straight to my doctor after monitoring myself over a few months after each injection. I had to be quite firm but i did insist I needed it more than ever 12 weeks. I now receive my B12 injections ever 10 weeks and feel much better

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Kevin henderson said on 12 October 2011

I was diagnosed as having B12 deficiency in 2005, and get my injections every 12 weeks. However, after approximately 9 weeks I have no energy and feel lethargic. I mention this to the nurse every time I go for an injection, but keep being informed that injection are not given less than 12 weeks apart. Does anyone else have this problem, and will I have to spend almost a quarter of my life feeling tired.

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Kevin henderson said on 12 October 2011

I was diagnosed as having B12 deficiency in 2005, and get my injections every 12 weeks. However, after approximately 9 weeks I have no energy and feel lethargic. I mention this to the nurse every time I go for an injection, but keep being informed that injection are not given less than 12 weeks apart. Does anyone else have this problem, and will I have to spend almost a quarter of my life feeling tired.

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B12sufferer said on 01 October 2011

Just found out why I have been feeling so dreadful for the past 6 months, I have joined the 1 in 10,000 group, lack of B12. Dr arranged a blood test thought I had throid problem or menopausal, but its not it B12 deficiency.

Have numerous health problems and take alot of meds, so not unusual to feel awful. But had the most horrible headaches, pins and needles in feet. I have migraine and a pain condition so just assumed they were worse.

The extreme tiredness seem to have had all my life, thought the breathlessness was due to having a few extra pounds and although I wanted to walk etc it was often so tiring, afterwards would need to lie down. I am 51 so knew it was not normal.

I am to start my injections next week. I had no idea how dangerous it was until I read the leaflet in the pack and thought I should find out more.

Funny thing is that my doctor says I might be borderline diabetic, but other vitamin levels are high so must have a good diet. This is a wake up call, I am going to eat less junk/biscuits and try to walk at least 30 mins per day to start with.

Thank you all for your comments, they have helped me understand the condition much better. Hopefully I will have more energy and the head pain and other matters might be sorted.

Not looking forward to the injections, but have pain killing injections into my thigh so hope they are not as bad as those.

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Skii said on 08 September 2011

Seems strange for me to read these posts, I was diagnosed with PA when I was 25, I am not vegan but I am diabetic.
I am also allergic to B12 injections and come out in a nasty blistering rash which covers my whole body. For the past 2 years my local hospital has basically pushed me from one department to another blaming my anemia on internal bleeding, not breathing properly when sleeping even my periods got blamed for it!
Now finally after 2 years of fighting, suffering neuro and nerve damage my Dr prescribed cyanocobalamin tablets. For me this is too little too late.
Can anyone help me in finding a way to stopping headaches? My headaches seem to last for up to 8 weeks, get worse as my B12 levels and Iron levels drop and dont go away even after talking pain killers of any kind.
Also, is it normal to be very bad tempered when B12 levels are low?
Thanks guys

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faybelle said on 23 July 2011

I have had pins and needles on my right side for over a week after a bad headache.. The hospital did loads of tests and said I needed to take vitamin B12 but didnt say why.. I havent been offered any injections.. I guess the tablets will help. It is worrying but I hope now I have the tablets they will do the job
Is there any other advice anyone can offer me please..I am not a vegan or vegetarian.. Thanks

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B12patienthappyandwell said on 29 June 2011

Hi everyone diagnosed with pernicious anaemia

Please do not feel afraid. My tip is not to look at the injection as it goes in and to embrace it, telling your body that it needs the injection to survive.

I was diagnosed at the age of 34 and was terrified at the thought of having the B12 injections every three months.

But I did not want to suffer nerve damage or eventually die from it, so I decided to make the best of it.

In brief, I have an injection every three months and I have got so used to it that I sometimes even forget to book an appointment!

It has become part of life. And as somebody said earlier, before this injection was invented, people used to die from this disease.

So thank you to the inventor and the medical teams today.

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jinny39 said on 26 June 2011

I forgot to add in my previous message that I am also diabetic.

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jinny39 said on 26 June 2011

I was diagnosed last Tuesday and was told the reason I had this was a combination of the chemotherapy I had for my second attack of Bowel Cancer this time was very serious as it had passed through the bowel wall into the lymph glands which have been removed. I have been prescribed with B12 tablets and folic acid. I find it worrying with my history to read that this treatment can result in stomache cancer. I have not felt "right" since the surgery and lately very depressed. I take anti depressants which have been increased. I also have - amongst other things - Diverticulitis, I.B.S. and Glomerulonephritis and wonder whether I shall ever feel well. I would love to be able to lead a relatively normal life for the years I have left. It's a lonely old world and I know others are far worse of than I but sometimes that does not help very much.

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Griff53 said on 07 June 2011

I was diagnosed in March with PA ( I had never heard of it). After my crash course of injections I felt brilliant, so much energy and so healthy, I didn't realise how unwell I was feeling. Today I have just had my 12 week injection but for the past 3-4 weeks have been feeling very unwell again. Headaches, pins and needles in my hand, can't sleep, fuzzy head, is this normal just before my injection and will it always happen just before my injections?

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User555127 said on 14 May 2011

I have pernicious anaemia due to lack of intrinsic factor resulting from atrophy as I age. I need B12 injections and no additional folate. In fact in my case additional folate is contra-indicated.

This NHS page confuses vitamin B12 and folate deficiency as one single condition and this can be misleading for many people. If your anaemia requires that you take additional vitamin B12 it does not necessarily imply that you need folate as well. In some instances taking folate in addition to B12 can prevent the absorption of the B12. Depending upon the tests run to determine your anaemia you may require to take folate or B12, or in some instances both. Taking additional folate without having taken the additional tests to confirm this is needed may have a negative effect.

This page should be re-written to diferentiate vitamin B12 from folate deficiency as they are not the same thing.

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cjbears79 said on 11 April 2011

Hi,
I was diganosed with Pernicious Anaemia just over a week ago, and I am currently in the middle of my two weeks of every other day injections. I am not feeling the benefit yet, but was told it may take time, as they are unsure how long I have had this condition for before it was dignosed. The injections do hurt, worse than I have ever felt before, but like another member has said the condition used to be fatal, so I would rather suffer a painful injection. I also have irritable bowel, and chronic excema in places, which I also believe are linked to this illness. Work have been a little "funny" about the time I have to take off work for the injections, but other than that, I was just pleased to finally have a diagnosis!

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Megans mum said on 04 April 2011

My daughter is 10 years old and has just been diagnosed as being b12 and folate deficient. She was diagnosed as being Coeliac last year and this is apprently linked. Not sure what they're going to do to sort this but she's so weak and sore. Diagnosis today, hospital next week so sort out a "cure".

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pale and interesting said on 23 February 2011

I have joined the ranks at 48 of Vit.B12 deficient,just to add to my collection.I have been lethargic for a long time,but put i down to motherhoodx2 and working for the NHS for longer than I care to remember The sympathy vote from the hospital as a member of staff,was non exsistant !! and ran my health further into the ground,so much so I lost my job because of it.My grandpa had the same condition, but it was not recognised or diagnosed at that time 47 years ago.I have been told it usually runs down the female side of the family,but not in this case.I have just started the injections and although they are a bit stingy,I have suffered worse.If you rub the site after the jab,it soon wears off.The nurse I have makes a difference as she is very good.Keep grinning and bearing it,its worth it in the end !

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littleholl said on 07 January 2011

Im 28 years old and was diagnosed about 2 years ago. I was permanantly tired and had muscle weakness in my lower thighs and upper arms which would then make me panic and I would faint at the drop of a hat. I had felt this since I was 16 years old and was told for years there was nothing wrong with me and to stop being lazy!!! I knew I wasnt well. It was only when I went for treatment for chronic IBS that they ran the test for this anaemia and it showed up. I have a healthy active lifestyle and I eat meat and dairy products so my body should be absorbing the vitamins but it aint happening. I feel so much better for having the injections and cant imagine not having them now. Having said that, I still struggle with the fainting, tiredness and muscle weakness which is not as bad now but usually its worse for about 2 weeks before im due for the injection. I always feel like I need it early. I like most of you are on every 12/13 weeks and folic acid tablets daily. And yes.....I agree that jab does sting!!!!! My nurse says its apparently the most painful of the ones she administers! We are brave soldiers aren't we ha ha. To anyone just diagnosed, dont panic, Its really not as scary as you first think.

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JudithML said on 03 December 2010

I was diagnosed with pernicious anaemia 15 years ago at the age of 44. I was picked up early as a former regular blood donor, found to be persistently anaemic. I have been having the three-monthly injections ever since. I really would recommend all readers of this page who have been disgnosed or suspect they have pernicious anaemia to go to the site of the Pernicious Anaemia Society on www.pernicious-anaemia-society.org. The Society has an advice line and forums which give a lot of helpful advice. The Society is questioning whether the B12 injections shouldn't be given more frequently than three-monthly.

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sophieee said on 18 October 2010

Iv got vitamin b12 and folate deficiency and Im 20! was diagnosed when I was 18, and also had a spout of Iron deficiency too. Glad to know I'm not always tired for no reason , as I wasnt aware that was a symptom. Taken a year to decide that I need injections regularly as I have instead been having a blood test and then injection only every 3 months! And yer I agree they burn down your vein abit. When im due an injection also have spouts of feeling faint afew days before.

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User482247 said on 21 September 2010

Hi. I've been diagnosed with PA for about six years and receive my injections every 12 weeks. Ruby's right, they do hurt!! I'd been fine until about the last six months when the injections seem not to be making any difference. I'm constantly lethargic, feeling poorly most of the time, getting stomach cramps etc. I'm being referred to gastroentrology to see what might be going on. I'm now at my wits end feeling so bad all the time. Has anyone had a similar experience?

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Quail said on 24 August 2010

Hi I have been diagnosed for 6 years now and receiving injections. I had got to the point where the hospital thought I'd had a stroke before Pernicious anaemia was diagnosed and I'm now 41. My life is now great in comparison to before - try not to let it get you down - I cannot remember a lot of my childhood as the neural pathways are still shrouded in 'fog' caused by the damage done before diagnosis, but things are now fantastic. Try to stay positive about the fact that it is manageable and enjoy and make the most of what you have got. I have since done a science degree and I'm now a college lecturer so things can be great!

My mother-in-law used to be a nurse and she says people used to die from this, but now the doctors can keep us going which i think is something to be thankful for personally.

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Ruby1985 said on 15 August 2010

Hi Jill, I'm only 25 and have pernicious anaemia and ha iron / folate deficiency! You probably had your big batch of injections by now and you'll know you feel better quite quick! Ouch - they hurt! I don't feel any more unwell when it comes round to having an injection - get a bit more tired around when it's due and when I got them
Every couple of days I felt very sickly!! Booo I hate the needles - an inconvenience!!
O

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nutmagnet said on 01 July 2010

just been diagnosed this week with Pernicious Anemia..... terrified as I know that 4 people out of a 100 get stomach cancer because of having P.A......I know that I have this for life, and need injections to keep me well!.....at the same time im fed up as I already have an auto Immune disease Rhumatoid Arthritis!!....I need to know once ive had my injections, how long will it take to feel well again? and does a person get sick in between the 12 weekly injections?? thanks Jill

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clairec43 said on 19 April 2010

Ive recently been diagnosed with pernicious anemia (b12 deficient) and I am only 43. Ive been told its an autoimmune disorder. I already have another longstanding autoimmune disorder, my thyroid. I had a sub-total thyroidectomy when I was 22. Ive heard Im more at risk of this type of disorder because I have 2 already! Im now having b12 injections for life

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alliemay said on 30 March 2010

i am vitamin b12 and folate deficient i am not a vegan or vegetarian and i have had this condition since i was 47 i have been told that this can actually run in families and have since found out that my grandfather had this condition

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