Update B12 Deficiency: Update - What... - Pernicious Anaemi...

Pernicious Anaemia Society

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Update B12 Deficiency


Update - What now ? Fed up.

Got my blood results printed –

B12 103 ng/ L (180 - 1000)

Ferritin 69 ug/ L (10 - 300)

Foliate 4.3 ug/ L (<4.00)

IF Antibody - negative.

Coeliac - negative.

I had an appointment with the other, neuro. GP, who after a thorough exam.,pins in legs, eyes as well, ordered a chest xray and Cat scan. I presume the xray was negative (it was 2 weeks ago) Cat scan for head next week. I didn’t think to ask why!

In the meantime bouts of feeling faint and sick, balance is very bad and numb legs are worse. I see my GP on Monday, perhaps he will tell me more.

Nothing more about injections until 3 months are up.

10 Replies

When were the blood tests taken? Have you had treatment and this was before treatment or is it after treatment

Your B12 is extremely low if it's been reported correctly.

If it is after you have been treated then you obviously need B12 more frequently

If you are in the UK with neuro symptoms then treatment should be shots every other day until symptoms stop improving followed by maintenance shots every 2 months - though that isn't necessarily enough ... and if these are your results after treatment then you obviously do need treatment more frequently.

IF Antibody test is notoriously inaccurate - so a negative test result doesn't prove that you dont have PA but most GPs are not aware of this.

Your folate is also on the low side - much lower than it should be if supplementing B12 is going to be useful.

beginner1 in reply to Gambit62

Thank you for your help.

The tests were done mid January, before treatment, and are correctly printed from the blood test results.

I then had 5 loading injections (only 5 allowed by Gloucestershire) which finished a month ago, and nothing since.

My GP’s are very nice but are going by the Glos. guidelines not updated since 2005.

Gambit62Administrator in reply to beginner1

Following outdated guidelines really is no excuse. The minister of health frequently trots out the duty of doctors to use their professional judgement as a justification for not amending guidelines.

There is a lot more that your GP should be doing and could do than just saying they can't amend your treatment because that is the local guidelines. If the local guidelines said that you needed to be eating raw liver would he be refusing to do any more than recommend raw liver? Has he queried if the guidelines are appropriate in the light of new national guidance? asked his colleagues to do likewise?

Sorry, but hiding behind bad behaviour just because everyone else is doing it is the sort of thing that allowed Jimmy Saville and Stuart Hall to get away with what they did for so long. Its the start of a very slippery slope.

I'd advise that you look at Sleepybunny's post as I'm sure she has given you contact details for the PAS - join and see if they can help with getting the guidelines changed in Gloucestershire.

The other thing you can try - looking at your response to Sleepybunny - is treating yourself - you could try high dose sublinguals or a nasal spray and if you haven't got fight then suggest you do do that - and if your family persecute you for it then just ignore them. You need to look after you first.

beginner1 in reply to Gambit62

Hi Gambit

I did argue - pointed out the outdated Guidance - my neuro. symptoms etc., the one every second day injections I should be getting. It achieved nothing. When I left I think the GP was irritated although still polite, and I was upset.

I will wait for the CT Scan results, although I think that will just muddle the situation, only 10 or so days to go for results, and then I will phone PAS and be back, probably, for self medication advice.

Thanks for your and sleepybunny's advice.

jillc39 in reply to beginner1

This sounds so familiar - I have dreadfully painful/numb legs and feet - my gp is only just still polite - but ignores my requests for more frequent B12 - and sticks firmly to 'the guideline'.  I am seeing her tomorrow and I have printed out the Petition and am going to take her a copy.


I've assumed you're in the UK

HDA Charity

This charity can offer free second opinions on medical treatment and diagnosis. they are quick to respond to enquiries. People may need to provide a full medicla history.


020 7935 8366

Online contact form


"Coeliac - negative. "

It is possible to still have Coeliac disease even if blood test negative. Were you eating plenty of gluten in the weeks and days prior to the test?

My understanding is that if Coeliac symptoms continue after a negative blood test there are further tests a GP should do. See links below. A person who is IgA deficient will not produce the normal Coeliac antibodies.



Coeliac UK helpline is very helpful.

0333 332 2033

"IF Antibody - negative."

Hopefully your Gp is aware that people can still have PA (Pernicious anaemia) even if IFA test is negative. Martyn Hooper, the chair of the PAS tested negative on more than one occasion before testing positive.

The "BCSH Cobalamin and Folate guidelines" mention Antibody Negative PA. I read the whole document and gave a copy to my GPs. Page 29, a diagnosis and treatment flowchart mentions antibody negative PA. i also gave my GPs a copy of Martyn Hooper's latest book

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

This is up to date with new guidelines and I think also mentions Antibody Negative PA.

"bouts of feeling faint and sick, balance is very bad and numb legs"

I think these would normally be considered neuro symptoms. I'm surprised you are not being offered injections. Inadequate treatment of B12 deficiency can lead to permanent neurological damage.

Useful UK documents

These make it clear that patients symptomatic for B12 deficiency should be treated.



Google "BCSH Cobalamin and folate guidelines"

Some people find it helpful to take someone who is supportive with them to appts especially someone who understands their illness and is up to date with recent documents/guidelines.


Are you a member of the PAS (Pernicious Anaemia Society)? It costs about £20 for a lifetime membership.

They should be able to point you to useful info and can sometimes intervene on behalf of members.


01656 769 717

If you leave a message they should get back to you within a few days.

Thank you for your help.

I have bought and read the books you suggested in an earlier post, joined the PAS Society and have emailed the Glos. Support Society. I could not go to their first meeting as I have had to stop driving (as well as the rest of my life.)

Yes I am in the UK, in the dreaded Gloucestershire who have not updated their B12 Treatment Guidelines since 2004/ 05

Yes lots of gluten – cake with slabs of cheese on top!

The neuro. symptoms worry me too. They have escalated since the beginning of January. In the summer I produced a small magazine doing all the research myself, now I have trouble answering this post.

“Useful UK documents”

I will copy these and take them to GP.

“Someone Supportive”

Supportive! If the doctor said ‘jump’ my family would say ‘how high’ I have been ticked off for ‘self diagnosing’ AFTER the B12 103ng/L (180 - 1000) result came in when I checked up on it as I had never heard of it. My GP’s are very nice but it seems I have to fight them, my family and Glos.Guidelines as well, and I don’t have much fight left.

sami0x in reply to beginner1


I am also from Gloucestershire (Cheltenham) and was given loading doses when my B12 Levels were 148, I also testing negative for PA.

I was told I'm not allowed any more injections for another SIX months! It is ridiculous. I'm having to resort to self injecting.

beginner1 in reply to sami0x

I am from Cheltenham too. 'Six months' is from the Glos. outdated ( 2004/5) Treatment Guidance. How many loading injections did you get - I got 5.

Have you joined the Glos. support group, I have, but could not go to their first meeting. I have also joined PAS.

sami0x in reply to beginner1

Hiya, no I haven't joined them. I had five injections too, I'm just going to self inject as it's too long to wait.

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