Hi there, my mum (79) is B12 deficient (like me and my sister and auntie) and when tested had a really low count of 61 so they put her on loading doses and she has since had 2 lots of injections 3 months apart. She went back to the doctor as still feeling exhausted etc and asked for B12 more frequently and had further blood tests to check for Vit D deficiency etc. The doctor phoned her yesterday and told her all tests ok and now her B12 is showing as 600 she won’t have another B12 injection for 2 years - she is understandably distraught and challenged the doctor on the phone but the doctor insisted it stays in your body and she doesn’t need it. The doctor also made reference to coronavirus and cut backs but my mum in under the same health board as me and my surgery is not saying injections will stop. With everything going on (isolation etc) my mum could do without this and is now not sleeping worrying about it. She rang them back today but was told she couldn’t speak to another doctor and has to phone at 8am Friday to request a callback. I am going to contact them in the meantime and quote NICE guidelines etc but just need to ensure I nail this and get this decision reversed straight away. My only concern is that she has intrinsic factor test which was negative. please help x
Help my elderly mum - please - Pernicious Anaemi...
Help my elderly mum - please
Join the PAS. They can offer the best advice. They may be a bit short-handed at the moment, but I believe most of the phone contacts work from home.
Hi,
If you join PAS they can point you to useful info to pass on to GP.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no 01656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
Has she been tested for PA (Pernicious Anaemia)?
Blog post about how PAS can support PAS members seeking PA diagnosis
martynhooper.com/2017/06/24...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK.
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
Unhappy with Treatment (UK info)?
"and challenged the doctor on the phone but the doctor insisted it stays in your body and she doesn’t need it."
I recommend putting queries about treatment into a letter to GP. In UK, letters to GP are supposed to be filed with medical notes. Always keep copies of any letters written.
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
NICE CKS
cks.nice.org.uk/anaemia-b12...
Local Guidelines
Try to track down the local NHS guidelines on treating B12 deficiency for your mum's area of UK and compare them with national guidelines eg BSH, NICE CKS and BNF links. Some parts of UK use guidelines that are years out of date.
Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.
From PAS website
pernicious-anaemia-society....
From B12 Deficiency Info website
I wrote a detailed reply on another forum thread with links to B12 books, B12 websites, UK B12 documents and other B12 info which I think you might find helpful.
healthunlocked.com/pasoc/po...
M ore B12 info in pinned posts on this forum.
I am not medically trained.
Thank you fbirder and Sleepybunny - much appreciated. I’ve joined PAS and will give them a ring tomorrow. Thanks again x
Hi,
An interesting article to read...
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Suggests
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
Has she got any neurological symptoms?
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
PN (Peripheral Neuropathy)
nhs.uk/conditions/periphera...
Useful B12 book
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
One I plan to read
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
B12 Deficiency Info website
B12 Awareness (US website)
B12d.org holds support meetings near Durham, UK
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
tested for Coeliac?
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
Lots more info in link at bottom of my other post.
Just an update, my mum wanted to send a letter herself rather than phone the doctor, so we put a letter together with all the facts and links. As we’re all isolated, I talked my mum through how to email it which was fun! (we are also posting it). The doctor called my mum yesterday (Friday), but my mum missed the phone call and when my mum called back she was told the doctor isn’t available til next Tuesday. So my mum is now angry with herself for missing the call ☹️ I am hoping there will be a positive outcome but I will keep you updated. I’ve made contact with PAS so they’ll be my next port of call if we don’t get a positive response.
Hi,
Help for GPs
You or your mum could suggest that the GP looks at the section on PAS website for health professionals.
pernicious-anaemia-society....
It is free for her GP to join PAS as an associate member.
PAS website has a library section with useful leaflets/articles such as
"An Update for Medical Professionals: Diagnosis and Treatment".
PAS members can print these off for their GP.
pernicious-anaemia-society....
Think the next one is accessible to non members.
Summary of the BSH Guidelines on Vitamin B12 and Folate
I really hope she gets the treatment she needs.
I suggest emphasising the potentially permanent neurological damage that can be caused by delayed treatment in any further communication with GP if you struggle to get treatment. See next links.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access for PAS members only.
pernicious-anaemia-society.... See Page 2 of articles.
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
There is also a lot of useful info on B12 Deficiency Info website along with some strategies for coping with unhelpful GPs so it's worth a thorough read.
B12 Deficiency Info website
There may be stories on these next blogs that you and your family can relate to. Some of the stories can be quite distressing.
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
Another useful B12 book
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Authors are from USA so units of measurement, reference ranges, treatment patterns may differ from those of UK.
Once the pandemic is over, may be worth your mum trying to see her local MP if she is still struggling to get treatment.
Many on forum self inject because NHS treatment is not enough for them.
Many of these people are struggling to get supplies in current situation.
Some supplement with high strength oral B12, tablets or sublingual lozenges, sprays, drops but it's my impression that most on forum find injections the most effective.
Article about a patient with SACD whose B12 level was normal.
ncbi.nlm.nih.gov/pmc/articl...
Article starts with saying that immediate treatment is needed in patients with b12 deficiency to prevent permanent neurological damage.
Another link to an article about SACD in someone with normal range B12.
ncbi.nlm.nih.gov/pubmed/191...
If you want to update the forum , may be worth starting a new thread along with a link to this thread. Replies on older threads often get missed.
Elderly relative ignoring my advice re B12. 
Advice please 
Mislaid information
Help for my daughter's diagnosis please
