Is a B12 level of 341 ok?: Hi, Just... - Pernicious Anaemi...

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Is a B12 level of 341 ok?

Chasing-rainbows profile image
9 Replies

Hi,

Just wondering what your thoughts are on a B12 level of 341. This was my husband's result, and GP says absolutely normal, no need to supplement with B12. But this contradicts what we've read online about being deficient with anything less than 550.

Same old story here, as I have the same problem with GP's and their 'normal ranges' with my own thyroid issues. Interestingly enough my B12 was very close to my husbands result, mine was 343 so my first thought was maybe it was dietary related. But then, I think we do eat a balanced diet, I've recently started eating red meat again, before that I was still eating chicken and fish. Husband has always eaten red meat, plenty of veg etc.

Interested in your thoughts/opinions.

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9 Replies
Nackapan profile image
Nackapan

If the range is 200-900 a good in range result. My husbandz actually wax 186 in a range of 190 - 900

He had no symptoms bug nis takes a low dose b12 tablet daily. 10mcg@

His last level 320

Obviously csn absorb and utilise it.

Just goes to show we all function at different levels.

Go by symptoms.

Some have symptoms with an 'in range result'

It doesn't have to be in the 500s

Chasing-rainbows profile image
Chasing-rainbows in reply to Nackapan

The range was 180-900. That's interesting thank you. He'll continue with his supplements for now then and see if he notices any differences.

Sleepybunny profile image
Sleepybunny

Hi,

I think the issue is whether or not he has the symptoms of B12 deficiency rather than the serum B12 level.

I had over 40 symptoms typical of B12 deficiency with most of my B12 result between 300 - 500 ng/L, well within normal range. I did have one below range result.

UK guidelines indicate that patients with the symptoms of b12 deficiency should be treated even if serum (total) B12 results are within normal range.

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)

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....

It is possible to have Functional B12 Deficiency.

This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the person develops symptoms of deficiency.

MMA, Homocysteine and Active B12 (holotranscobalamin) are tests that can be helpful in diagnosing functional b12 deficiency.

Here's some more links and info about B12 deficiency that you and your husband may find interesting. I suggest you take at a week or so to sift through the links below as there's a lot of info.

Some links may have details that could be upsetting.

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

b12deficiency.info/what-to-...

If you suspect PA, worth joining and talking to PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA (PAS article)

pernicious-anaemia-society....

PAS website has lots of useful articles. Some PAS members print them off for their GPs.

pernicious-anaemia-society....

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

pernicious-anaemia-society....

There are many causes of B12 deficiency besides PA.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been tested for coeliac disease?

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...

More info on Coeliac UK website

coeliac.org.uk/home/

Some forum members have reported they benefitted from going gluten free even if coeliac disease not diagnosed.

H Pylori infection

patient.info/digestive-heal...

NICE guidelines H pylori

pathways.nice.org.uk/pathwa...

Click on blue boxes in flowchart for more info.

bnf.nice.org.uk/treatment-s...

Any exposure to nitrous oxide?

Nitrous Oxide

gov.uk/drug-safety-update/n...

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

Any chance of internal parasites eg fish tapeworm?

Have you lived or stayed in an area where internal parasites are common?

One clue that internal parasites might be an issue is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found with results for Full Blood Count (FBC).

Referrals

If you have neuro symptoms, have you been referred to

1) a neurologist?

2) a haematologist?

If gut symptoms present, have you been referred to

3) a gastro enterologist ?

Link below outlines when UK patients with B12 deficiency should be referred to a haematologist and gastro enterologist...

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

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

Be warned that there is ignorance about B12 deficiency and PA among some haematologists, neurologists and other specialists so no guarantee that a referral will lead to better treatment.

Symptoms Diary

You may find it helpful to keep a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received.

BNF link below outlines two recommended patterns of treatment for B12 deficiency in UK

1) for those without neurological symptoms

2) for those WITH neurological symptoms

BNF Hydroxocobalamin

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

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.

Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links in this reply.

To find local guidelines for your area of UK ...

1) search forum posts using terms "local guidelines"

2) search internet using "name of CCG/Health Board B12 deficiency guidelines"

3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

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

b12deficiency.info/gloucest...

UK B12 documents

BSH Cobalamin and Folate Guidelines (detailed, aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines (main points from 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.

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 next year.

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).

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.

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

Link 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.

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 in this reply for up to date info.

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

Very comprehensive with lots of case studies.

Films and videos about B12 deficiency and PA

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

If your GP is lacking knowledge about B12 deficiency and PA, links below may be useful.

Misconceptions (wrong ideas) about B12 deficiency

B12 article from Mayo Clinic in US (detailed, aimed at researchers and health professionals)

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...

BNF (UK ) treatment guidance has changed since above blog post was written.

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg more on 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.

Chasing-rainbows profile image
Chasing-rainbows in reply to Sleepybunny

Great thanks, we will look through these links and take it from there. It threw us a bit as underneath the result it says B12 deficiency unlikely, seek further advice if suggestive features present eg neuropathy... so we didn't want to be missing something.

FlipperTD profile image
FlipperTD

Scientist, not medic.

The result looks good to me, but as always, 'treat the patient, not the numbers'. If there are symptoms, treat the symptoms.

With a reference range of 180-900, then a result of 'mid 300s' is good. [The distribution is skewed.] So, at a guess, the majority of folks will be around the mid 300s.

Good luck!

lucasussex profile image
lucasussex

Mine is 150 again folate is 3.5 vitamin D 25

PhilAB profile image
PhilAB

From my research anything under 500 is deficient, also you never mentioned if you or husband supplemented? As others have said symptoms are just as important as levels, personally seeing what daily injections, going organic, diary and gluten free and taking various supplements have done to my health I would recommend everyone look after their own health. After my experience would not trust a doctor is they told me water is wet.

Chasing-rainbows profile image
Chasing-rainbows

My husband has just started supplementing now since getting his blood results so he's interested to see whether he notices any changes/improvements.

I bought the B12 better you spray, but have had to stop for now as I'm going to get some more bloods done privately and need to stop for two weeks beforehand.

Gardenswithwings profile image
Gardenswithwings

I had significant neurological symptoms of PA when my blood level was 502. Three weeks later, I couldn't walk without a walker and my blood level was 286. Fortunately, the hospital tested for IFAB, which was quite high. So, I was finally diagnosed! I think, for many folks, symptoms are more important than blood levels.

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