Was originally diagnosed 8 years ago. I have not had injections for 2 years due to covid so asked GP to restart them but wouldn’t without blood test etc. blood test has come back saying b12 is normal and intrinsic factor is negative so he is saying I don’t have PA anymore? And therefore won’t treat me.
any advice? Should I have been retested?
Hi,
PA is a life long auto immune condition that requires lifelong treatment.
It does not go away.
I wish I could say I was shocked that you've not had an injection for 2 years but I hear that story so often on here, I'm no longer shocked.
I suspect your GP never read the updated guidance on B12 that BSH (British Society of Haematology" published in April 2020.
pernicious-anaemia-society....
There are 104 comments under the article, mainly from people whose treatment was affected during pandemic.
I suggest you consider joining PAS (Pernicious Anaemia Society) who can offer support and pass on useful info.
PAS membership is separate to membership of this forum.
pernicious-anaemia-society....
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS support groups in UK
pernicious-anaemia-society....
Face to face meetings should resume this year.
Testing for PA
pernicious-anaemia-society....
A pepsinogen test may also be helpful in diagnosing PA.
PAS website has lots of useful leaflets/articles that PAS members can print out and pass to GPs.
"Treatment is for Life"
"What to Do if Treatment Changed"
Some articles can be accessed by non-members.
pernicious-anaemia-society....
You could point your GP to the page on PAS website for health professionals.
pernicious-anaemia-society....
Some PAS members have arranged for their GP to speak to PAS. Talk to PAS about whether this is possible.
pernicious-anaemia-society....
"blood test has come back saying b12 is normal and intrinsic factor is negative "
Your GP appears not to know that a negative result in Intrinsic Factor Antibody test does not rule out PA. It's possible to have Antibody Negative PA. See BSH flowchart below.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates covering a variety of situations linked to B12 deficiency
1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
2) Keep letters as brief, to the point and polite. Harder to ignore a letter in my opinion.
3) When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
Proof a letter was received may be useful if there is a need for a formal complaint in the future.
4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised. I included a request in letters that a copy of letter was filed with medical notes.
Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.
5) Letters could contain some of the following
relevant test results
date of diagnosis
relevant family/personal medical history
quotes from UK B12 documents
requests for referrals to relevant specialists
The shorter the letter, the more likely the GP is to read it in my opinion.
NHS Complaints
patients-association.org.uk...
Care Opinion website
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Not currently taking on new cases but this may change in the future.
Local MP/devolved representative may be worth talking to if struggling to get treatment.
MPs website will have an online contact form and number for MPs case workers and a list of when advice surgeries are being held.
A few people got to the Press/other media
Likely to permanently affect GP/patient relationship but can be effective.
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...
Medical Records
I suggest you access your medical records and track down the original diagnosis of PA if possible and get copies. See if you had a positive result in IFA test in the past and see if you also had Parietal Cell Antibody test (PCA) and gastrin tests.
Retention of UK medical records
bma.org.uk/advice-and-suppo...
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.
Accessing Health Records (England)
patients-association.org.uk...
Some people access test results and medical records with NHS app.
nhs.uk/nhs-app/nhs-app-help...
Patients can also request access to paper records.
I will be adding more to this thread.
Some links I post may have details that could be upsetting.
UK B12 documents
NHS article about B12 deficiency (simply written, lacks detail in my opinion)
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
pernicious-anaemia-society....
This is the flowchart I referred to in post above.
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 link below outlines two patterns of treatment for B12 deficiency in UK
1) for those without neuro symptoms
2) for those WITH neuro symptoms
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
If you have neuro symptoms, make sure you are on the treatment pattern for those with "neurological involvement"
NICE stands for National Institute for Health and Care Excellence.
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
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
Each ICB (Integrated Care Board)/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or submit a FOI (Freedom of Information) request to ICB /Health board asking for a link to or a copy of local B12 deficiency guidelines.
CCGs (Clinical Commissioning Groups) were replaced by ICBs on July 1st 2022. It's likely that ICBs will take on the clinical guidelines of the CCGs they replaced.
Read blog post below if you want to know why I urge UK forum members to find out what's in their local B12 deficiency guidelines.
You will need to register with the website to access the blog.
b12deficiency.info/gloucest...
Vital to get adequate treatment for B12 deficiency.
Inadequate treatment increases the risk of permanent neurological damage including damage to spinal cord.
Do you have neurological symptoms?
If yes, does your GP have a list of all your symptoms, especially every neuro symptom and definitely any affecting your spinal area? See Symptoms lists below.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (B12 Institute Netherlands)
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Referrals
NICE guidance Suspected Neurological Conditions
NICE when to refer B12 deficient patient to neurologist/haematologist/gastro-enterologist
cks.nice.org.uk/topics/anae...
Two useful B12 books
I gave a copy of Martyn Hooper's book to one set of GPs.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF info in book is out of date. See BNF hydroxocobalamin link.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Films and videos about PA and B12 deficiency
PAS conferences
pernicious-anaemia-society....
Films about b12 deficiency
Have your symptoms got worse, returned or new symptoms appeared since your treatment was stopped?
Worth keeping a daily symptoms diary that tracks changes in symptoms over time. Could be useful evidence of deterioration or improvement in symptoms to show GP/specialist. Note any treatment received and any relevant blood test results.
Misconceptions about B12 deficiency
I suspect your GP has some misconceptions (wrong ideas) about PA and B12 deficiency.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
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...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Other links that might be useful...
NICE guidelines - Patients' experience of healthcare
Adults
Have a look at your ICB (Integrated Care Board) or Health Board website and read their mission statements/values which should include statements about patients' care.
NHS Complaints Advocacy
voiceability.org/about-advo...
pohwer.net/nhs-complaints-a...
advocacyproject.org.uk/what...
There are other advocacy groups in UK besides these.
Search online for "NHS Complaints Advocacy".
Parliamentary and Health Service Ombudsman - England
There are also ombudsmen in Wales/Scotland/NI.
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.
How have you managed without a b12 injection for 2 years?
What are your symptoms?
Have you s copy of your PA diagnosis?
If on your medical notes get a print off
Why did the doctor test again?
Once you've got PA you've got it and need b12 injections for the rest of your life.
At the frequency that hopefully keeps you well.
Only if diet related can be turned round .
Hi the same thing happened to me so I buy the B12 and self inject now. I was told injections for life when diagnosed but my blood tests came back saying my level was ok when they retested.I didn't have a choice as without new test they wouldn't give me the injections.
Where in the “ normal “ range is it?I was in the bottom third and have no intrinsic factor. GP originally said I had enough b12 until cardiologist confirmed PA.
I was extremely symptomatic.
I think your best bet is probably to write a short letter to GP and copied to practice manager asking for injections to be reinstated and include reasons why eg
date of PA diagnosis
list of symptoms suggestive of PA/B12 deficiency
quotes from UK B12 articles/documents eg BNF/NICE CKS/BSH and local B12 deficiency guidelines for your area
See letter writing link in one of my other replies. Keep copies.
If they won't reinstate your injections, might be worth (in a letter) discussing the
the increased risk of developing SACD, sub acute combined degeneration of the spinal cord if left untreated.
I am not saying you have SACD, I'm not medically trained but I am saying that your GPs should be aware that SACD is a potential consequence if treatment is stopped or delayed.
If you're symptomatic for B12 deficiency but currently within normal range then UK guidance suggests you should be treated. See NHS, NICE CKS, BSH links.
If I have time I will add some quotes that might be useful for you to include in any letter.
Summary of BSH Cobalamin and Folate Guidelines includes the statement
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
Newly diagnosed, looking for advice
Just been diagnosed - scared 
Finally diagnosed with pernicious anaemia
Newly diagnosed B12 deficiency
Just diagnosed and hoping for a better future. 
