b12 availability?

[PaulaG3]

I have been advised to have B9/folate. How would I know B12 levels are ‘available’?

[Technoid]

There is no foolproof test. You can try Active B12 but the most specific test is MMA (Methylmalonic Acid).

However, a deficiency can still exist with normal B12, MMA and Homocysteine:

ashpublications.org/blood/a...

From an anecdotal perspective my B12 was 210 after 2 years of neurological symptoms and my MMA was normal. I had what can only be described as a dramatic response to supplementation and then injections.

[PaulaG3 in reply to Technoid]

thank you 🙏🏼 I have neurological symptoms but my GP wasn’t interested in re-checking b12 x

[Technoid in reply to PaulaG3]

Did you get a B12 serum result and range (if you don't mind to share?)

[PaulaG3 in reply to Technoid]

I have just been tested today x

[Sleepybunny]

Hi,

I have read that if a person has both folate and b12 deficiencies, it's vital that both are treated. B12 treatment would be started first.

Starting folate treatment without treating a co-existing B12 deficiency may lead to neurological problems.

From personal experience, I can tell you that it is possible to have severe B12 deficiency symptoms with a normal range serum B12 result.

UK guidance on treating B12 deficiency suggests that people who have the symptoms of B12 deficiency should be treated even if their serum B12 is normal range.

Some links about B12 deficiency that might be of interest.

Some links may have details that could be upsetting.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

b12-institute.nl/en/symptom... (from B12 Institute Netherlands)

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...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

PAS can offer support and info about Pernicious Anaemia.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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

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

Some UK B12 documents

NHS article about B12 deficiency and folate deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

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

stichtingb12tekort.nl/engli...

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and folate deficiency

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

Local B12 deficiency guidelines

I suggest UK forum members find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board.

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper founded PAS (Pernicious Anaemia Society).

UK BNF treatment info is out of date in book. 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

Films about b12 deficiency

b12deficiency.info/films/

PAS conferences

pernicious-anaemia-society....

Some health professionals have wrong ideas about B12 deficiency

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...

There is more info I can post...just let me know if you'd like me to.

[bookish]

From my own experience it seemed as if I must have had a folate deficiency despite reasonably high serum folate, as I had such an obvious improvement with small amounts of methylfolate. But I was already taking good amounts of B12. It is possible to do better testing privately, although I haven't as can't afford it. You could try asking for either a neuro or an Adult Inherited Metabolic referral. Prob best neuro first, although I haven't yet met one who understands B12. If you can get any testing, try to do it all before any supplementation. Best wishes

[PaulaG3 in reply to bookish]

thank you 🙏🏼 My neurologist is awful! I did sporadically supplement on the summer but haven’t supplemented for 6 weeks or so and have just been retested.

[bookish in reply to PaulaG3]

I hope you can make some progress. As others have said, there is no perfect test, so you can rule in a deficiency with low serum B12, or low active B12, but can't rule one out. Even parietal cell antibodies, intrinsic factor antibodies, homocysteine and MMA can be misleading.