Diagnosis. - which blood test?

[AFGran]

I appear to have all the symptoms, minus the red tongue, but have only had a CBC. Should I ask for a more sensitive blood tes, and if so, which one? I’m aware that it took years to diagnose my mother with pernicious anemia

[Nackapan]

Have you had your b12 level checked?Another test is the Intrinsic factor anybody test.

A positive result means you have got PA

A negative result doesn't mean you haven't.

Only test used now

A clinical diagnosis otherwise.

Hope you find the best courses of action

Plenty of information on the PAS website.

B12 deficiency Tracey Wiley.

Or use the search tool on here

[Sleepybunny]

Hi,

Some links that may be of interest.

I've assumed you're in UK.

Link about "What to do next" if B12 deficiency suspected or newly diagnosed.

b12deficiency.info/what-to-...

If you suspect you have PA or get a PA diagnosis, worth joining and talking to PAS who 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.

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.

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.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

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....

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Summary of above document

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/anaemia-b12...

cks.nice.org.uk/topics/anae...

Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you track down a copy and compare it with BSH. BNF and NICE CKS links.

Some local guidelines are unhelpful and differ from the guidance in BSH, BNF and NICE CKS links so worth knowing what you are up against locally.

Some local guidelines have been posted on this forum so worth searching posts for "local guidelines" or try an internet search or submit a FOI (Freedom of Information) request to CCG/Health board asking for a copy of local B12 deficiency guidelines.

It is also possible to submit a FOI request to GP surgery.

Hope you are not in the area discussed in blog post below which has a poor reputation on this forum for how B12 deficiency is treated.

b12deficiency.info/blog/202...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms present.

Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

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.

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 have.

Two useful B12 books

"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 treatment info in this book is out of date. See BNF Hydroxycobalamin link in this reply.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Links below are to forum threads where I left some detailed replies with lots of B12 info which you may find useful eg UK B12 documents, causes of b12 deficiency, more B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

There may be some details in the links that could be upsetting.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained just someone who suffered with unrecognised B12 deficiency for years.