Good local guidelines in UK

[Sleepybunny]

Hi,

I know that some parts of UK have out of date local guidelines on B12 deficiency.

Where in the UK has good local guidelines?

[fbirder]

Hull and East Yorkshire - hey.nhs.uk/wp/wp-content/up...

That document explains how they arrived at their definition of 'deficient' (115 pmol/L - set so that only 4.5% of normal people test as deficient). They also set an intermediate range (115 to 150 pmol/L).

People with symptoms and B12 less than 115 are tested for IFAB then treated with injections for life with no further testing - regardless of the IFAB result.

People with symptoms and B12 between 115 and 150 are tested for IFAB and started on a course of injections. If the IFAB is positive, or if their symptoms are alleviated, they are treated with injections for life with no further testing.

People with symptoms and a B12 slightly above 150 should be given trial injections

People with no symptoms but B12 less than 85 get injections for life with no further testing.

People with no symptoms but B12 between 85 and 115 get tested for IFAB after three months of oral B12. If IFAB is positive - lifelong injections. If negative their B12 is retested, if still low then consider lifelong injections.

The only way to avoid lifelong injections is to not respond to B12 injections.

[Sleepybunny in reply to fbirder]

If the area I am in had had these guidelines I would not have suffered for so many years.

I like the fact that the guidelines show you do not have to have a positive result in IFAB test to get lifelong treatment.

What are the equivalent ranges in ng/L?

deficient (115 pmol/L)

intermediate range (115 to 150 pmol/L).

[fbirder in reply to Sleepybunny]

To convert from pmol/L to pg/L you need to multiply by the molecular mass of B12, then divide by 1000 to get ng/L. The mol. mass of B12 is about 1350.

So 115 pmol/L is 155 ng/L. and 150 pmol/L is 202 pmol/L.

But, don't forget. They set their ranges for their assay, done in their lab, using their equipment. Another lab using different equipment might well come up with another level where 4.5% of normal people are labelled deficient.

[titania2019 in reply to fbirder]

Fab guidelines but no further testing worries me as every 12 weeks jab wasn’t enough

[fbirder in reply to titania2019]

The reason for no further testing is that such tests are pointless. It is a near certainty that a blood test taken 12 weeks after your last jab would show levels that were still way above the bottom of the 'normal' range.

If you were tested there's a good chance that your doctor would say that you're no longer deficient and that you don't even need injections every three months. You might be told to go away and come back in a year for another test.

Once injections start blood levels mean nothing. That's why treatment needs to be based on symptoms.

[greenlord in reply to fbirder]

This is not the case in this area, I live in this catchment and having initially presenting my self to Gp last year with what I now know to be classic lowB12 symptoms, including neurological ones, and having a blood test that was just in the deficient range I have received zero treatment from Gp!

[fbirder in reply to greenlord]

As has been said. They are guidelines, not tramlines. Doctors feel they are free to totally ignore any guidelines. Plus, it’s likely that many are just ignorant of those guidelines.

[Sleepybunny in reply to greenlord]

Hi,

just a brief reply

Have you considered writing a letter to GP?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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

Point 5 is about being symptomatic with an in range result.

I wrote some detailed replies on another forum thread which may have some useful info for you.

healthunlocked.com/pasoc/po...

[Sleepybunny]

I'm also interested to know which UK areas have local guidelines that need updating.

[fbirder]

I would be, if I lived anywhere near there. I'm way at the bottom of the country.

Actually, I'm quite lucky in that my lot are quite open to treating symptoms. I've been told several times that I'd be on tablets if I lived in the area next door.

[fbirder]

I quote Hull because they are the only NHS trust I've found that publicly publish sensible guidelines.

If any NHS doc says 'we can't do that' there is often the option of saying 'If they can do it in Hull, why can't you do it here?'