Only One Chance - B12 deficiency: Recommended... - Thyroid UK

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Only One Chance - B12 deficiency

helvella profile image
helvellaAdministratorThyroid UK
17 Replies

Recommended article on the Pernicious Anaemia Society website.

Quite an easy read and very much worth reading - whether you have a B12 issue, or think you don't have a B12 issue!

Only One Chance

Bruce Wolffenbuttel

pernicious-anaemia-society....

About the author

Bruce Wolffenbuttel is a Professor Emeritus MD PhD and an expert in endocrinology, metabolic diseases, and diabetes, with numerous published papers to his name. He is a member of CluB-12 and a respected voice on B12 deficiency and Pernicious Anaemia. His contributions to discussions and debates on the challenges facing B12 deficient patients and those with Pernicious Anaemia are highly valued amongst patient advocacy groups like the Pernicious Anaemia Society.

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helvella
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17 Replies
Buddy195 profile image
Buddy195Administrator

Thankyou for posting; it’s a very interesting link. I personally have had very different results within a couple of days & an explanation is given for this:

There is day-to-day variation of serum B12; as an example, a concentration of 150 pmol/l on one day may be 120 pmol/l on another day. Some studies have reported a difference between days of over 100 pmol/l

helvella profile image
helvellaAdministratorThyroid UK in reply to Buddy195

Which makes GPs refusing to accept low B12 with a result of 155 (assuming low end 150) a complete farce.

RedApple profile image
RedAppleAdministrator in reply to helvella

I've only skimmed through so may have missed it, but I didn't see any mention of testing Active B12 instead or as well as serum?

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

That is, I think, correct.

Difficult to be sure, but the extreme rarity of Active B12 testing within the NHS PLUS a wish not to make the article longer by including that, might be why.

RedApple profile image
RedAppleAdministrator in reply to helvella

On their Anaemia test info, MMH say:

'This test measures this active portion of vitamin B12. Low levels can indicate vitamin B12 deficiency. Measuring the active portion of vitamin B12 is thought to be a better marker of vitamin B12 deficiency than measuring all of the vitamin B12 in the blood. ' monitormyhealth.org.uk/anae...

It would be good to get an endorsement of this from a well respected expert such as Bruce Wolffenbuttel.

helvella profile image
helvellaAdministratorThyroid UK in reply to RedApple

There is a NICE paper from 2015 (so getting on a bit) about Active B12. I consider it remarkably negative in tone. I mean they seem content to allow the following statement - to which I say "Yikes - that is serious B12 deficiency".

The NICE clinical knowledge summary on anaemia anaemia states that a diagnosis of vitamin B12 deficiency is generally made through the analysis of a person's clinical history.

Signs and symptoms include:

• a 'lemon tinge' to the skin

• inflammation of the tongue

• oropharyngeal ulcers

• neuropsychiatric and neurological symptoms including peripheral neuropathy.

nice.org.uk/advice/mib40/re...

No apparent interest in prevention - just delaying diagnosis.

RedApple profile image
RedAppleAdministrator in reply to helvella

'No apparent interest in prevention - just delaying diagnosis'

Sounds familiar!

crimple profile image
crimple

helvella thanks for posting. Wonder how many years it will take for that to filter through the health system!

helvella profile image
helvellaAdministratorThyroid UK in reply to crimple

Several times I have referred to a claim that it takes an average of seventeen years for something like this to get from academic papers to actual practice. For example, it took around that time for the idea of taking levothyroxine at bed-time to be mentioned (if not promoted) more widely.

In this case, I suspect it will be much longer...

Porridgeoaties profile image
Porridgeoaties in reply to helvella

hi there, I take levo at bedtime. I do this because I have to take a lot of meds and it’s easier for me to do it once a day. Is there any info on this being a good approach?

helvella profile image
helvellaAdministratorThyroid UK in reply to Porridgeoaties

How about this?

helvella - Bed-time dosing of levothyroxine

Discussion about taking levothyroxine at bed-time.

helvella.blogspot.com/p/hel...

Porridgeoaties profile image
Porridgeoaties in reply to helvella

Thanks so much!

greygoose profile image
greygoose

I haven't read it all yet, but I'm impressed! What a wonderful man! Why aren't there more doctors like that?

Thank you for posting. :)

Dancer57 profile image
Dancer57

I have read this article on the PA website and found it very interesting.

Personally I think the NHS testing for B12 is a bit out of date. I believe there are some Trusts in the Country that now only test Active B12,

My total serum B12 was 263 a few months back, on eating more B12 foods and no supplements it increased to 444.

Me thought, that's good until I tested for Active B12 and it came back borderline deficient at 28.6 (37.5 -188). I then did an MMA urine test where the result was high, suggesting a B12 deficiency. The total serum of 444 would not suggest any deficiency!!

I have already posted the above on the PA website so some may have seen it already.

I "think" updated NICE guidelines on B12 are due out some time this year. I am sure someone on here might know more.

helvella profile image
helvellaAdministratorThyroid UK in reply to Dancer57

:-)

Currently says 6th March 2024!

Vitamin B12 deficiency in over 16s: diagnosis and management

nice.org.uk/guidance/indeve...

Dancer57 profile image
Dancer57 in reply to helvella

Thanks for this info. I'll make a note of the date and see what happens!

arTistapple profile image
arTistapple

WOW! I like this guy. Talk about straight talking. We need someone like this batting for us with thyroid issues.

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