Good morning,
Haven't posted for a while but have now joined the "new GP in post - you don't need B12 injections" group.
I've got an appointment with dispensing pharmacist and I would like the newest info from Nice re the pointlessness of testing for long term users.
Could anyone point me to those and the details about the unreliability of the blood tests used by NHS to test levels?
Thanks
Sue
Hi,
"new GP in post - you don't need B12 injections" group.
Has the GP explained why they think you don't need B12 injections?
Knowing the reason why will help people on here point you to the most useful info.
Have they sent you a letter explaining why?
Hopefully something useful in links below.
UK B12 documents
NHS article about B12 deficiency and folate deficiency
(simply written, may have some useful quotes)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines (main points from above document)
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
New NICE guidelines
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
Local B12 deficiency guidelines
I recommend you get hold of the local guidelines on treatment/diagnosis of b12 deficiency for your CCG/Health Board and compare the info in them with BNF, BSH and NICE CKS links.
Local guidelines are reviewed every few years and can sometimes change drastically so keep an eye on them.
GPs are likely to follow local guidelines even if local guidance differs from BNF/BSH/NICE CKS etc.
If you want to know why I recommend getting hold of local guidelines, see blog post below about a UK area which has a poor reputation on this forum as to how B12 deficiency is managed.
b12deficiency.info/gloucest...
Some local guidelines have been posted on forum so
1) try a search of forum posts using terms "local guidelines"
2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"
3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
PAS
Are you a PAS member?
PAS membership is separate to membership of this forum.
They can offer support and pass on useful info.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS website has useful articles and a page for health professionals that your GP may find useful.
pernicious-anaemia-society....
pernicious-anaemia-society....
There are some PAS support groups in UK and I think they are hoping to start face to face meetings again soon. Useful source of local info.
pernicious-anaemia-society....
Link about What to do next if B12 deficiency suspected or diagnosed
b12deficiency.info/what-to-...
I felt some of the points might be relevant to you.
Unhappy with Treatment (UK info)
May be worth you writing a letter to dispensing pharmacist, GP and practice manager where you set out your concerns and include relevant quotes.
If this is not possible prior to appointment, may be worth writing a letter after appointment.
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates that people can base their own letters on.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Keep letters brief, to the point and polite. Harder to ignore a letter in my opinion. Keep copies of any letters sent or received.
In UK, my understanding is that letters to GP are supposed to be filed with medical notes so are a record that an issue has been raised.
The person who runs B12 Deficiency Info website has helped some people on this forum.
CAB NHS Complaints
citizensadvice.org.uk/healt...
MPs
Local MP/devolved representative may be worth talking to if struggling to get treatment.
Going to the Press
A few people got to the Press/other media
Newspaper article about patient struggling to get B12 treatment in Scotland
eveningtelegraph.co.uk/fp/i...
And a positive follow up story
eveningtelegraph.co.uk/fp/b...
Misconceptions about B12 deficiency
Too many of us on this forum meet health professionals who have misconceptions (wrong ideas) about B12 deficiency.
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
UK BNF treatment guidance has changed since above blog post written.
Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
I may add more to this reply so check back later.
Blog post about help if injections are stopped
b12deficiency.info/are-your...
Petition to get injectable B12 available over the counter
change.org/p/dr-june-raine-...
Tracy Witty's campaign to get injectable B12 available over the counter.
b12deficiency.info/eight-lo...
Thank you - I remember your very helpful posts. I've just told the dispensing chemist that I'm not prepared to go through all the retesting again, and explained the process that the doctor I saw at the time used (the days a while ago when we actually had a named doctor) and the reasons for my diagnosis.
The dispensing chemist will relay my refusal to the new doctor and we shall see what the outcome will be. I don't even go to the surgery to have the jabs, as my husband does them for me. I simply don't understand the fixation with the one size fits all approach that doctors take towards a vitamin.
Once I get a response I will use some of the documents you suggest. I belong to PAS, so will use their factsheet too if the new doctor wants to have a sensible discussion.
Regards
Sue
I hope things work out for you.
"I've just told the dispensing chemist that I'm not prepared to go through all the retesting again."
May be worth expressing your concerns in a letter to both dispensing chemist and GP as this should ensure your view is on record. Keep copies of letter and any replies to it.
Info passed on verbally may sometimes be forgotten or not recorded or recorded with incorrect details.
Some UK forum members choose to self treat when NHS treatment is not enough.
I suspect (I'm deeply cynical about the way B12 deficiency is managed).
1) that your GP surgery is looking for ways to cut costs and practice manager has asked for a review of people on B12 injections
2) the CCG/Health Board has asked GP surgeries to review people currently on B12 injections across your area
Thanks - do you have advice about purchasing from Versandapo.de? I've just tried and on the site I could order but delivery only in Germany. I retried using Amazon pay and although again the order was taken payment wasn't.
I know wedgewood posts very helpful replies on which European pharmacies are currently posting to UK.
How reliable is the serum ferritin test?
New NICE guidelines 
PAS, NICE and guidelines for PA.
NICE guideline on B12 Deficiency diagnosis and monitoring in over 16s
New NICE Guidelines Now Published
