Repeat blood test after loading dose???

[Patsypar]

My B12 level was very low <100 and after testing I was diagnosed with pernicious anaemia. A couple of weeks after the loading dose my blood was retested and came back with a B12 level of 2000 - not surprising as I’d had the loading dose. What was worrying is that it came with an added note saying that it was adequate for at least two years. Im worried that my GP, who initially had me booked for three monthly injections, will now refuse to give them for two years. Has anyone got views on this??

[Sleepybunny]

Hi,

I am sorry to read that the lab's comment has caused you worry.

Many on this forum have found that doctors and other health professionals have misconceptions about B12 deficiency...I don't think there is enough about it in their training.

The only way to tackle the ignorance is to educate yourself about B12 deficiency and PA.

Do you have any neurological symptoms?

If yes to neuro symptoms, then BNF (British National Formulary) recommends following pattern of treatment...

A B12 loading injection every other day for as long as symptoms continue to improve then a B12 maintenance injection every 2 months

There is no set time limit as to how long every other day loading injections can continue for those with neuro symptoms. Could be weeks even months of them.

BNF recommends the following treatment pattern for those without neuro symptoms...

6 B12 loading injections over 2 weeks then a maintenance B12 injection every 2 - 3 months

Some UK GPs seem unaware that both treatment patterns allow for maintenance injections to be given every 2 months.

From what you say, I suspect you are on the treatment pattern for those without neuro symptoms.

Vital to get adequate treatment. Untreated or under treated B12 deficiency increases the chances of developing permanent neurological damage including damage to spinal cord.

PA requires life long treatment.

Have you considered joining PAS (Pernicious Anaemia Society)?

Useful B12 links and info

There is a lot of information here and I suggest that you take a week or so to sift through it so it's not so overwhelming.

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

b12deficiency.info/what-to-...

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....

PAS website has lots of useful leaflets/articles including

"Treatment changed – What can you do?"

"Treatment is for life"

pernicious-anaemia-society....

Some PAS members pass these onto their GPs.

PAS website has a page for health professionals that your GP may find useful.

pernicious-anaemia-society....

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....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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/topics/anae...

Each CCG/Health Board is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you track down the guidelines for your CCG/Health Board and compare them with BNF, NICE CKS and BSH links.

Some local guidelines are unhelpful. See link below which discusses local guidelines in a UK area that has a poor reputation on this forum for how B12 deficiency is managed.

b12deficiency.info/blog/202...

To find local guidelines for your CCG/Health Board

1) Try a search of forum posts with terms "local guidelines" as some have already been posted.

2) Try an internet search with "name of CCG/Health Board B12 deficiency guidelines"

3) Submit a FOI (Freedom of Information) request to CCG/Health Board asking for a link to or copy of B12 deficiency guidelines being used in area.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link has letter templates. Point 1 is about under treatment of B12 deficiency with neuro symptoms.

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.

nhs.uk/nhs-app/nhs-app-help...

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 above book is out of date. See BNF hydroxocobalamin link 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 Deficiency Misconceptions

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...

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

Some UK forum members end up treating themselves as they cannot manage on NHS levels of treatment. I feel this is a last resort but I was forced to when NHS refused to treat me.

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.

[Patsypar in reply to Sleepybunny]

Thank you for such a comprehensive reply. There is a lot to research but I will be exploring all of the information that you have given.

[Patsypar]

Thank you for the support. Yes I will definitely argue the point with my GP if it comes to that.

[FlipperTD]

Scientist, not medic.

It's inexcusable to retest post injection if the surgery has actually done the injections, as compliance is assured.

The fact that it's come back at 2000 isn't the whole answer; I suspect that 2000 is the top of the measurable range of the test and it's probably even higher than that. All that proves is that you've actually been injected! As for the added comment? Well, I despair.

Good luck.

[Patsypar in reply to FlipperTD]

Thanks for your reply. Im due my B12 jab 1st Dec so I’ll wait and see if it goes ahead. If not I will definitely fight back.

[Sleepybunny]

Hi,

A blog post about help if B12 injections are stopped.

b12deficiency.info/are-your...

I also wondered if you have neurological symptoms, have you been referred to

1) a neurologist?

2) a haematologist?

NICE CKS link below discusses when GP should refer patient with B12 deficiency and/or folate deficiency to a haematologist.

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

If GP won't refer, you could ask GP to write a letter to a local haematologist asking for advice on how to treat you.

Referral to a specialist is no guarantee of better treatment as sadly there are some specialists whose understanding of B12 deficiency is lacking.