B12 now back to 'Normal'.

[DogLover55]

A few months ago I became very ill and after a series of blood tests was found to have very low B12 levels. I had all the symptoms of B12 deficiency/Pernicious Anaemia. My doctor prescribed Cyanocobalamin 1mg per day. After taking this for two months blood tests show that my B12 levels are now close to normal. The problem is that I still have all the same symptoms. My doctor has no answer for this and I'm really confused and worried. He says that I don't have PA as my B12 levels have recovered. I was wondering if anyone else had a similar experience or if anyone had any advice. I don't feel that I can carry on being this ill with no hope of treatment.

[Nackapan]

How foes your doctor know you haven't pA ,

How does your doctor explain your ongoing symptoms. ?

B12 treatment takes time.

Alot get worses before better.

One on injections your body often needs high levels maintained yo be able to use it at cell level.

What maintenance are youn on?

Write

See another gp

You are ill snd need treating

T c

[Narwhal10]

Hi DogLover55,

I thought I’d copy and paste this link, Look at what CliveAlive has written - it’s far more eloquent than I can put things.

healthunlocked.com/pasoc/po...

Best wishes

[Hidden]

I would ask your gp for actual blood test results, which you are entitled to. What concerns me is the statement b12 results are close to normal. ( what is normal ? And the fact they aren't normal if they are only close)

I personally would write to the doctors, detailing symptoms and state that even though your levels might have increased it hasn't resolved on going issues.

Please keep copies of letters sent as proof.

[Gambit62 Administrator]

you may want to share this study with your GPHigh dose oral can be effective in raising B12 levels and works for some patients but other patients still show secondary bio-markers for B12 deficiency even though serum B12 levels may have been raised.

smw.ch/article/doi/smw.2017...

[Sleepybunny]

Hi,

UK guidelines on B12 deficiency indicate that patients with the symptoms of B12 deficiency should be treated even if serum B12 results are within normal range.

Some B12 links that may be helpful....

I suggest taking a few days to read through them and maybe have a supportive friend or family member to help you.

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

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

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Symptoms of B12 deficiency and Folate deficiency

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....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

If you suspect PA or have 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.

PAS website has lots of useful leaflets/articles that some forum members pass on to GPs.

pernicious-anaemia-society....

Have you been tested for PA (Pernicious Anaemia)?

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.

Some GPs may not be aware that it is possible to have Antibody Negative PA.

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)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present.

Link above has letter templates that people can base their own letters to GP on.

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.

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...

See section in above link for those with "neurological involvement" if you have neuro symptoms.

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. Worth getting hold of local guidelines for your CCG/Health Board and comparing them with BSH, BNF and NICE CKS links.

It's worth knowing what you are up against locally as some UK local guidelines on b12 deficiency differ from BSH, BNF and NICE CKS guidance.

Link below discusses treatment/diagnosis of B12 deficiency in an area of UK that has a poor reputation on this forum for how B12 deficiency is dealt with.

b12deficiency.info/blog/202...

Dietary b12 deficiency is sometimes treated with low dose cyanocobalamin tablets (50 mcg).

My understanding of UK guidelines (see BSH Cobalamin and Folate guidelines) is that B12 deficiency with neuro symptoms should be treated with B12 injections even if the cause is dietary.

There are moves across UK to put more patients onto high dose cyanocobalamin tablets as an alternative to hydroxocobalamin injections.

This is sometimes promoted as easier for patients. Cynical me suspects a cost incentive...it's cheaper.

I would be asking why you were put on high strength oral b12 rather than injections.

PAS news item about oral B12 treatment

pernicious-anaemia-society....

Have you been tested for coeliac disease?

UK guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac.

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

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 book is out of date. See BNF hydroxycobalamin link in this reply for up to date info.

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

Very comprehensive with lots of case studies.

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.

Films and videos about B12 deficiency and PA

PAS conference 2019

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

Have you been referred to a

neurologist if neuro symptoms present?

haematologist if neuro symptoms present?

See link below about when patients with B12 deficiency should be referred to a haematologist.

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

a gastro enterologist if gut symptoms present?

A gastro specialist should be able to spot signs of gut damage from PA, Coeliac disease and other gut conditions.

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

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.

[Sleepybunny]

"He says that I don't have PA as my B12 levels have recovered."

What does GP think caused your low B12?

Were you eating plenty of B12 rich foods eg meat, fish, shellfish, dairy, eggs, foods fortified with B12 prior to diagnosis of low b12?

If yes to B12 rich diet then diet as a cause of B12 deficiency is less likely and more likely that there is an absorption problem in gut eg PA, Coeliac disease, Crohn's disease and other possibilities.

Did GP check any medication you were on?

Some medicines/drugs may affect B12 levels.

Discuss any concerns over medication with GP. Local pharmacist may also be helpful.

Other possible causes of B12 deficiency include heavy drinking, exposure to nitrous oxide, damage to terminal ileum (part of gut where B12 is absorbed), internal parasites eg fish tapeworm. There are other causes besides these.

Might be worth accessing medical records to see if you were tested for PA, Coeliac and to find out what GP said when original low result was found.

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...

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.

Has GP got a list of all your symptoms especially any neurological symptoms( including any symptoms affecting spinal area)?

See symptoms lists in other reply.

In a similar situation I would be asking why I was prescribed high strength oral tablets rather than injections recommended in BNF. See BNF hydroxycobalamin link.

Cynical me suspects a cost incentive...

I suggest you put any queries about treatment into a polite letter to GP and maybe copied to practice manager. See letter writing link in other reply.

Try to get hold of the guidelines on treating B12 deficiency for your CCG/Health Board.

It could be that you are in a UK area which has local guidelines recommending high strength oral tablets rather than injections.

Search posts on this forum with term "local guidelines" as some local guidelines have been posted on forum or try an internet search with "name of your CCG or Health Board, B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG or Health Board asking for a copy of local guidelines on B12 deficiency.

If you still can't find them, local MP may be able to help.

More info in threads I linked to at bottom of other reply.

[FlipperTD]

Scientist, not medic.

Blood levels can be returned to normal relatively quickly but the symptoms, caused by the deficiency, takes longer, and can take much, much longer.

The red cell changes are reversed in a matter of a few months, because your red cells are replaced completely in four months.

Good luck.

[Midnight_Voice]

Patient: I’m hungry

Doctor : Here’s food

(Patient eats it)

Doctor: Are you hungry now?

Patient: No

Doctor: That’s great, I’ve cured your hunger, and now you will never be hungry again!