Pernicious Anaemia Society

Help needed for my friend

I am quite worried at the moment over the lack of support my very good friend is getting from her GP.

At the moment she has got pain around the outer rim of her ears. She was diagnosed B 12 deficient about three years ago and was getting injections done then one of the gps said she could no longer have them, I think due to a funding issue but that's only mine and my friends opinion. She has had lots of tiredness

balance and memory symptoms. She saw a GP yesterday and he had no idea what the pain in her ears were and has recommended a blood test next week.

Just thought I would ask on here if anyone has any ideas what her problem could be.

Thank you to all that may be able to help

6 Replies

"was getting injections done then one of the gps said she could no longer have them,"

I'd urge your friend to contact PAS (Pernicious Anaemia Society) without delay.


01656 769 717

Office open from 8am till 2pm every day except Sundays.

If she leaves a message they will get back to her within a few days.

On Martyn Hoopers blog there are stories about people who have had their injections stopped.


thank you so much for the info it's most kind of you to reply so quickly


Personally i would suggest she does nothing until after blood tests - making sure that it has b12 and folate etc done at the same time.

See what the results are then repost for advice if the gp refuses to reinstate injections. Which incidently should never be stopped if someone is diagnosed as b12 deficient, even if they are only getting the basic 3 monthly one ( uk).

At this juncture any self supplementing will probably mess with a true result.

Also the actual hydroxo injection is inexpensive its the nurse who costs the money.


unfortunately there are a lot of misconceptions among GPs over B12 and there can be a mistaken focus on measuring serum levels and treating on those. This is very dangerous as serum levels are a very small part of the equation when it comes to the progression of a B12 deficiency.

They can also be under the misconception that once they have raised your B12 levels then you will start being able to store and recycle the B12 you have - which is completely wrong. The mechanism for storing and recycling B12 depends on the same mechanism as absorption - ie the ileum (which is where things go wrong) so if that is kaput there isn't going to be any recycling.

Basically injections will put a lot of B12 into your blood but after that (particularly given the doses used) most is going to be passed out of the body in urine ... with some of it being used - the proverbial leaking bucket that is eventually going to become totally empty again.

I'd suggest actually tackling GPs about continuity of treatment and get them to reinstate the injections - regardless of what the current serum levels are.

if you are UK based then you may find this section of the NICE guidelines on cobalamin deficiency of use.

And as Lisahelen say the costs are the nurses time - a dose of B12 costs about 70p


Recent UK Documents make it clear that patients who are symptomatic for B12 deficiency should be treated even if their B12 blood results are normal range.

"tiredness balance and memory symptoms"

These can all be found in B12 deficiency but also in some other conditions. Thyroid problems are sometimes found with B12 deficiency. Does your friend know what caused her original B12 deficiency? Has she ever had an IFA test? This test can help to diagnose PA (Pernicious Anaemia) but is not always reliable and it is possible to still have PA if the IFA test is negative.


If she has been diagnosed with PA in the past then PA requires injections for life. This info is in the BNF (British National formulary) Chapter 9 section 1.2. All UK GPs will have access to the BNF. Info on treatment is also in the BCSH Cobalamin Guidelines.

There are other cuases of B12 deficiency besides PA that require lifelong treatment.

See link below, info on treatment is in Management section.

Symptoms Lists


See Symptoms Checklist

I printed a copy, ticked all my symptoms and gave it to GPs.


I gave the following documents to my GPs because I wanted them to be well informed.

Google "BCSH Cobalamin and Folate Guidelines"

I was told the NHS should be following these.guidelines. I read the whole document. I found page 29, a diagnosis flowchart helpful.


"Could It Be B12" by Sally Pacholok and JJ. Stuart

Comprehensive book about B12 Deficiency

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

Recent book (Oct 2015) written by chair of PAS.

Thyroid UK

Coeliac UK


Thank you all so much for all the information it's very helpful and I will pass this on to my friend


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