are b12 serum ranges different in every NHS area.

[charks]

I'm confused. My B12 test results showed a range of 180-914. Yet it appears that some forum members are being denied treatment at much lower levels. It doesn't make sense. Especially since Japan has a starting level of 500. And a much lower number of cases of dementia.

[fbirder]

No. Japan does not have a 'starting level of 500'. That is a myth that just will not go away.

This is what the Japanese government say - ncbi.nlm.nih.gov/pmc/articl...

"If serum vitamin B12 levels are <200 pg/mL, vitamin B12 deficiency is very likely. If serum vitamin B12 levels are >300 pg/mL, vitamin B12 deficiency is unlikely."

If they treated everybody with levels below 500 then they would be treating 95% of their population.

Apparently we also treat everybody below 500 as being deficient. - clancymedicalgroup.com/vita...

Normal ranges in the UK are set by individual labs. The problem is that there's a big overlap between people who are deficient but with 'normal' B12 and people who aren't deficient but have low B12. See my explanation here - healthunlocked.com/pasoc/po....

Hull and East Yorkshire have a document that describes how they decided on a 'normal' range of 115 - 1000 pmol/L. But they also have a grey area of 115 - 150 pmol/L where cases need to be assessed individually. hey.nhs.uk/wp/wp-content/up...

[charks in reply to fbirder]

How did the myth get started then.

[charks in reply to charks]

So this article is telling lies

advances.augusta.edu/1014#:....

And so is this website

perniciousanemia.org/b12/le...

Where are they getting their info from?

[fbirder in reply to charks]

Not lying, but misinformed.

Where did they got it from? I think it originates in a japanese paper where they make that claim in the abstract. But it does not appear anywhere else in the paper. I think it's a misprint of the 200 figure mentioned in the link I posted earlier.

Here's a source that says that the average concentration of B12 in Japanese students was 340 pmol/L with a Standard Deviation of 50 pmol/L. jstage.jst.go.jp/article/jn...

If they treated everybody below 500 pmol/L (4 SDs above the mean) they would need to treat 99.997% of the population - everybody!

If they treated everybody below 500 ng/L (370 pmol/L - 0.75 SDs above the mean) then they'd need to treat 77.3% of the population.

And that is in students - who are likely to have, on average, higher B12 levels than the general population. Start including older people (with their gastric atrophy, PPIs, metformin, etc.) and you're looking at even more people being classed as 'deficient'.

It's a real shame that sources who should know better keep repeating this myth. Because doctors will look at it, immediately realise that its total shullbit and dismiss the writers as 'kooks'.

It's an even bigger shame that those sources refuse to listen when you try to point oit how ridiculous the claim is.

[helvella in reply to charks]

The second of those says:

Where 200 is often accepted as a low normal not needing intervention, Japan and England have updated their low normal values to be around 500-550, and consider anything less to be dangerous.

With respect to England, that is entirely fanciful and nonsensical.

And it is a site trying to sell you B12. So not exactly guaranteed neutral.

The first one misspells references (names) and, of those I managed to track down, none claims the very much higher ranges.

I did find:

Serum and Cerebrospinal Fluid Vitamin B12 Levels in Demented Patients with CH3—B12 Treatment—Preliminary Study—

Yoshio Mitsuyama M.D., Hiroshi Kogoh M.D.

First published: March 1988

doi.org/10.1111/j.1440-1819...

Which says, without much explanation:

The serum VB12 concentration in all the patients was within normal limits, I.e. 500–1,300 pg/ml.

And I don't have access to the full paper.

[Sleepybunny]

Hi,

In the past, I've posted a few of these local guidelines on the forum as have others.

If you search the forum posts using the term "local guidelines" it shows several of them.

I usually suggest to UK forum members that they find out the local guidelines for their area as some of them are not helpful. Worth knowing what you're up against.

Some local guidelines vary from the guidance found in documents below.

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 Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

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...

Hope you're not in the UK area mentioned in blog post below.

b12deficiency.info/blog/202...

If an online search does not locate the guidelines wanted...

1) Worth asking CCG/Health Board for a copy. May need to submit a FOI (Freedom of Information) request.

2) Try asking GP surgery for a copy of local guidelines. May need FOI request.

3) Local MP may be able to help get hold of a copy.

[FlipperTD]

I apologise in advance for this reply, but here goes!

This is a scientist's answer, not a medic's reply.

The quoted range for B12 levels in each area will be different. The question to ask is 'where did the reference ranges come from in the first place?'

Vitamin B12 has been measured by a wide range of methods, and it is confusing if you try to compare results from different methods, or even results from similar methods.

The reference ranges are usually derived by the laboratory doing the analysis.

I could ramble on at great length about this, but I'll avoid it this time.

[Hidden in reply to FlipperTD]

This is one reason I personally rely on how I feel and not totally on blood tests. Yes blood tests are an indication of what could be lacking, but is only what is in the blood at the time of the test.

[FlipperTD in reply to Hidden]

'Treat the patient, not the numbers' is a very good starting point. The numbers can be helpful, but it's only part of the solution to the problem, if there is one.

[charks in reply to FlipperTD]

Thanks for replying.

I originally posed the question because of a dispute with my partner. My difficulties in getting my GP to acknowledge my B12D diagnosis was a steep learning curve but he still can't get his head around the fact that B12 level ranges appear to be a postcode lottery. So I decided to ask the forum why it happens. He isn't happy with the replies. He says it's madness to have different levels in different parts of the country. But he is a very logical person and, in my opinion, there appears to be no logic used in diagnosing B12D.

[FlipperTD in reply to charks]

It seems like your GP is sensible and wise, but hasn't had enough immersion in the complexities of Pathology.

I think the problem here is confusing two things; The levels in the population around the country are very probably similar. However, the methods used for measuring Vitamin B12 will vary, and the ranges will reflect this. If were talking about measuring Haemoglobin, or Sodium, then the results would be comparable across the country. Measuring a vitamin however is another matter entirely. Plus it's worth considering 'where did the ranges come from in the first place?' but that's another story entirely.

[charks in reply to FlipperTD]

My GP is neither sensible or wise. I am talking about my partner's views.

[FlipperTD in reply to charks]

Sorry! I misread it.

[fbirder in reply to charks]

No.

It is not a 'postcode lottery'

If you test definitely deficient with one lab you should test definitely deficient with another lab.

They all set their 'normal' ranges to catch as many truly deficient people as possible, without declaring too many people as being deficient when they aren't.

The graph below shows an approximation of the levels you'll record for a group of people who are clinically deficient in B12, and the levels you'd record from a group of people who aren't deficient. You can see there's a big overlap - many people are deficient with a fairly high level of B12. Some people function perfectly well with fairly low levels of B12.

You can set a range that defines 'deficient' that doesn't also label to many normal people as deficient (Range 1). But that means a lot of people with a real deficiency slip through.

Or you can set a range that catches most of those with a real deficiency (Range 2). But then you're also putting the 'deficient' label on a lot of people who aren't deficient.

And don't forget, the people who aren't deficient outnumber those who are by a factor of 10 or more. So if you set your range to get 90% of those who are deficient, but also get 10% of those who aren't then most of those labelled as deficient will not be.

That's why the people making decisions need to be made aware of the grey area - where there's a significant overlap between those two populations. Rather than believing that there is a definite dividing line that splits those who are deficient and need treating and those who aren't.

The problem of B12 Ranges

[charks]

My definition of a postcode lottery is 'a situation in which someone's access to health services or medical treatment is determined by the area of the country in which they live.' From what I read some members of the forum are being denied treatment with a b12 level that would be considered low enough to warrant treatment if they lived elsewhere in the UK. That is what I consider a postcode lottery.