Very low B12, what other tests should... - Pernicious Anaemi...

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Very low B12, what other tests should be asked for?


Hi, My partner has just got blood test results

B12 is 187 (180 -1000).

Also his iron is fairly low 62 (25 - 350).

Folate lowish too 4.5 (> 4.0)

Back in 2012 his B12 was 177 and the GP did nothing! I gave him Jarrow formulas methyl B12. 5000Micrograms daily. Then when his B12 reached 600 I kept him on a maintenance dose of 1000 daily. About 10 months ago when our life got extremely busy he stopped taking the B12 and his B12 has come right down to 187.

The Dr has asked for another blood test in 2 weeks time and then to see her as there is a very high Eosinophil count also been high for 4 years!

His symptoms include tiredness, problems with memory, understanding and judgement. Also mood swings and anger.

My question is What other tests should we be asking for in order to establish pernicious anaemia or not!

Would be much obliged if any one could help. Thank you in advance.

30 Replies
clivealiveForum Support

Hi hymermad,

I am not a medically qualified person and there are others on this forum who will be able to give advice on that score but unless your partner has undergone gastric surgery his low b12 and his symptoms suggest other reasons need to be looked at.

Is he vegan or vegetarian as b12 in food can only be sourced from meat, fish and poultry including eggs accompanied by green vegetables high in folate e.g. spinach.

Is he on medication such as Metformin for diabetes or does he take antacids both of which are known to suppress the intake of b12 through the stomach.

If none of the above applies - he has a meat & Vegetable rich diet, is not diabetic and a normal digestion then you could suggest to his doctor to do an intrinsic factor antibody (IF antibody) test which may be used to help determine the cause of a vitamin B12 deficiency and to confirm a diagnosis of pernicious anemia. (P.A.)

If P.A. is confirmed your partner will need to have b12 injections for the rest of his life.

When I was first diagnosed I was given the option of eating raw liver three times a day or having the b12 injections and much as I love cooked liver, bacon, onions and gravy I chose the jabs. That was nearly 45 years ago and I'm still "clivealive" coming up to 75.

The following general symptoms are common in those with PA and your partner appears to manifest some of them but try and get the IF antibody test done for confirmation:

 The Strange Tiredness

 Fog days, where you have difficulty in thinking clearly

 Weakness

 Fatigue

 Upset stomach

 Abnormally rapid heartbeat (tachycardia) and/or chest pains

 Abnormal yellow colouration of the skin (jaundice)

 Heightened sensitivity to hearing, smell, and taste

 Vision distortion, e.g. seeing stars, or double vision

 Breathlessness

 Headache

 Cankers (ulcers) in the mouth

 Sleep disorders

 Intolerance to loud sounds, flashing lights

 Intolerance to crowded malls (needing personal space)

 Tinnitus – ringing in ears

Neurological Symptoms

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

Gastrointestinal Symptoms

The gastrointestinal symptoms of vitamin B12 deficiency may include:

 A sore tongue

 Appetite loss

 Diarrhoea and/or constipation

 Stomach pain

Your partner is a very fortunate man having you caring for him like you are and I wish you both well for the future.

kazza144 in reply to clivealive

All the above is correct, however it's worth pointing out that the intrinsic factor test can be a false negative and is only correct in 40% of tests. If he has Pernicious Anaemia which means he won't be a able to absorb B12 naturally then oral supplements won't treat the issue of low B12 but will increase his serum level. It's always best to have no oral supplements for 2 months before a blood test. There is an active B12 test available which some hospitals do offer but you'll need a referral letter from your GP and this test will confirm PA. Then he'll need injections for life.

What were his Mcv & mch levels on his last blood test as high levels can indicate an autoimmune disease but unfortunately GP's do not recognised this.

He'll probably need folic acid/folate & an iron supplements as well to bring his levels up as they all work in unison. When going back to your GP it may be worth printing off various documents to take with you as in my experience, most GP's are unaware of all of the issue's and don't tend to treat the patients symptoms but the levels on the blood test.

I was one of the lucky ones and got diagnosed with PA 20 years ago by a great GPark and believe you me they are very few and far between when it comes to this disease. Good luck!

chatycafy in reply to kazza144

SO true!! I suffered a long time, but finally got a correct diagnosis. My local GP didn't know what test to ask for! I found a specialist who knew exactly what to do.

hymermad in reply to kazza144

Thanks for your reply. His MCV was 89.1. (80 - 100). What is MCH.

I have read somewhere taking folic/folate acid an be detrimental if B12 low. But will do further research!

Many thanks for your reply

hymermad in reply to clivealive

Many thanks for your reply. Yes he has many symptoms and because of his stupidity!...... Cognitive decline he stepped off the camper step knowing he shouldn't and broke his ankle badly needing a 2 her op and so far 3 nights in hospital . I have hypothyroid and while I was being kept ill by the NHS! I studied my condition and joined forums etc and also cos I was low in B12 and ironed it islinked I recognise the symptoms. I also am sure he is hypo too but cos the dr won't test FT4 and FT3 we will have to do private tests!

Because he is having more blood tests on be 24 th I am going to write to GP requesting further tests for my partner.

She is accustomed to me doing this over my own condition!! And no he is not vegan or vegetarian so something else is going on.

And once againThank you so much

hymermad in reply to clivealive

Not sure if I put my thank you comment to you in the right place! Many thanks for your help. He is on no medication and not vegan or vegetarian.

He has many of the symptoms you mention.

Thank you

I agree with Clive's reply and would just like to add that here in Australia I was also given an antibody test for Gastric Parietal Cell as well as the Intrinsic factor. I was + for the GPC but negative for the IF so it was quite helpful in the diagnosis. Good luck, you are on the right track!

Here in the UK the recommendations say that an anti-GPC antibody test should not be carried out for PA, because there are other things that could be responsible. Instead the anti-IF antibody test is recommended.

The big problem with those recommendations is that many doctors seem to think that a negative result for anti-IF means a negative result for PA. This can induce them to stop necessary treatment.

I think they should carry out at least three tests - serum B12, anti-IF and anti-GPC - and diagnose PA if two out of three are positive.

Interesting, isn't it? Is the GPC test available on your Public Health scheme?

I scored two out of the three which happily found the disease. I was just lucky to have found an efficient doctor. That said, she is still not entirely happy about my fortnightly self injection and is sending me off for an MRI in case something else is in play.

I'm pretty certain all I need is B12 but will co-operate to ensure there is nothing else lurking.

Yes, the anti-GPC test is available on the NHS - because that's what my GP decided I should have. He is also happy with (well, resigned to) my self-injecting weekly. He prescribes enough for fortnightly jabs and I supply the rest.

You are lucky to have an informed GP. I think my GP will eventually settle to my regular treatment once she has exhausted her brain for alternative causes. Might take her a while but she tells me I am her fifth PA discovery so she is on to it. Hopefully, she can conduct her own little comparative study and will eventually come around.

hymermad in reply to fbirder

Thank you

Thank you.

Thank you

The best possible test your doctor can carry out is to prescribe a course of B12 injections immediately. It's the best way of telling if his symptoms are due to a B12 deficiency or something else. If it is B12 he'll improve, if it's something else he won't.

At the same time the doctor can start investigating possible causes. But any delay in treatment of B12 deficiency is not a good idea - it can lead to severe neurological problems.

hymermad in reply to fbirder

Thank you. I am going to suggest that to the Dr.

Many thanks

To me it seems as if he needs to get on a course of jabs. I would download the latest BCSH guidelines to take into your next appointment and insist on them. Take in the PA Society checklist of symptoms with those marked off that your partner suffers from. All this backed up with a letter outlining why you feel your partner should trial jabs. I find that putting things in writing makes them take you seriously. It has to go on your medical record so there is no wriggling out of what was talked about. I got all my medical records printed out and I was alarmed by what poor information was on there. I am not even sure they have put on the record that I have PA (despite a positive IFA result). Iron levels and folate should be in the higher end of range if you have PA I have been told so keep supplementing too.

hymermad in reply to NovicePA

Thank you. Very helpful info. Much obliged


I have read that B12 deficiency can sometimes occur in those with a fish tapeworm infection, I've also read that high levels of eosinophils can be a sign of fish tapeworm infection but can also be found in some other conditions.

See links below for info on fish tapeworm infection.


One of Martyn Hooper's books, think its the latest one,

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency "

includes the case history of someone who had a severe B12 deficiency due to fish tapeworm infection.

"Could It Be b12" by Sally Pacholok and JJ. Stuart

Very comprehensive book about B12.

Link about B12 deficiency tests.

Has he ever had an IFA (Intrinsic factor antibody) test. This can help to diagnose PA but is not partiuclarly reliable. people can still have PA even with a negative iFa test.

Useful UK b12 websites


01656 769 717

Useful UK documents

Recent UK documents make it clear that patients who are symptomatic for B12 deficiency should be treated even if B12 blood levels are "normal" range.

Interesting summary points

Google "BCSH Cobalamin and Folate Guidelines"

I found page 29, a diagnosis and treatment flowchart, useful.


Patients who have B12 deficiency with neurological symptoms should receive extended loading doses and maintenance doses at shorter intervals.

1)BNF (British National Formulary) Chapter 9 Section 1.2

2)BCSH Cobalamin and Folate Guidelines


See Management section in above link.


01656 769 717

Coeliac disease

Has he ever had a test for Coeliac disease? Coeliac disease affects the gut and can lead to difficulties absorbing some nutrients. Some people with a negative Coeliac test result may still have Coeliac disease.

Coeliac UK Helpline 0333 332 2033

I am not a medic, just a patient who has struggled to get a diagnosis.

"I got all my medical records printed out "

I think NovicePA was very sensible to do this. I learnt from experience that what I was told was "normal" was not always normal when I got a printed copy of results. I always get copies of my blood test results now.

hymermad in reply to Sleepybunny

Many many thanks for all the links. Yes I always get blood test results printed out as I have had a long journey with trying to educate my GP with my hypothyroidism! I am a heart sink patient as I always ask questions provide them with information!

Once again many thanks for your reply and all the info and links.

Antibodies to Intrinsic Factor. Also I would ask them to take biopsies of his stomach to determine damage if any and extent of damage. He may have either maldigestion, (gastritis) or malabsorption (small intestine) issues. Start there...

He must feel very poorly... So sorry. I'll say a prayer for him!

hymermad in reply to chatycafy

Thank you


Assuming you are in the UK then I'd push for treatment in line with BCSH and also draw your GPs attention to this alert in relation to dealing with a B12 deficiency on the basis of just test scores

There is NO definitive test for B12 deficiency. Tests for identifying the cause of a B12 deficiency as PA are also poor and, in my personal opinion, there is an element of red herring.

in some parts of the world fish tape-worm infestation is a relatively common cause of a B12 deficiency - eg scandanavian countries - where specific dietary practices lead to a higher risk of infestation. It is probably the one absorption problem that could be reversed but others can't be reversed - which is why the treatment ends up being the same.

The inaccuracies inherrent in the tests for PA mean that tests are often inconclusive.

PA tends to run in families so has genetic implications but as far as I am aware the actual genes concerned have not yet been specifically identified ... or we would probably using those as a way of defining existence of the condition.

Tests that can help to clarify if B12 is low in the absence of inconclusive (grey area) results are MMA and homocysteine - which look at levels of harmful waste products that build up if B12 is low ... but other things can also cause elevated levels, including low levels of folate. MMA is available on NHS. homocysteine is more expensive and generally not available on the NHS.

HOWEVER, as above the limitations of the B12 serum test (which reflect the huge amount of personal variation in the way we process and react to B12 that no machine can adjust for) means that in cases of uncertainty clinical symptoms are the correct way to go - as reflected in the BCSH guidelines.

Not really in a position to on the other factors beyond, as I think others have said - that folate is low which would affect ability to process B12.

If there isn't a lack of folate in your partners diet then it is possible that he may have a genetic problem processing folate in his food and converting it to the forms that are needed by the cells in order for them to do what they need. However, this tends to show up in blood results as higher folate rather than lower folate.

hymermad in reply to Gambit62

Thank you so much for the link and all the info.

When I was diagnosed with b12 diffiency my doctor also did an anti body test which revealed my intrincic factor cells had been destroyed so my body could no longer absorb b12 on its own . So maybe have an anti body test. Hope this helps

hymermad in reply to katiel86

Thank you. It does help.

hymermad in reply to katiel86

Thank you.

Thank you everyone who took time out to help me . I will let you know what transpires in due course.


Hi ,

Has your partners high Eosinophil count been investigated? It can be associated with EGPA a rare form of Vasculitis. Does your partner have asthma or sinus problems? Have they ever had their inflamatory markets checked?

The problem is that low B12 shares a lot of signs and symptoms with other diseases and can be a feature of autoimmune disease in general.

hymermad in reply to Hidden

No he hasn't got asthma or sinus problems. His eosinophil has been over the range for 4 yrs but now considerable higher. He has iching and spots on stomach forearms and legs but the GP not bothered! I do suspect he has under active thyroid but because TSH is in range they don't test FT4 and FT3 !

Many thanks for your input.

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