B 1 2 query: I wrote on here a few... - Pernicious Anaemi...

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B 1 2 query

Pinkpeony profile image
16 Replies

I wrote on here a few months ago about a blood test showing a b12 result of 1390.

A recent blood test has shown a reading of 1333 .

This is with no supplementation in 5months.

I am booked for a jab at lunchtime today. Obviously I will have to cancel , but what is going on?

Pp

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Pinkpeony profile image
Pinkpeony
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16 Replies
Gambit62 profile image
Gambit62Administrator

It sounds like you might have an MTHFR problem with B12 - MTHFR is a set of genetic variations that affect the bodies ability to methylate some vitamins - B12 and B9 (folate) but may possibly affect others - just not aware of them.

This would mean that the B12 in your blood is high but none of it is actually getting to the cells that need it in a for that can be used.

mthfrsupport.com.au/what-is...

Unfortunately testing for MTHFR isn't, as far as I am aware, available on the NHS.

Looking at an active B12 test might help but again this generally isn't available on the NHS.

Think you really do need to talk to the GP and encourage them to learn a lot more about B12 and what can go wrong even after supplementation has started.

Allyson1 profile image
Allyson1 in reply to Gambit62

I've not heard of long-term high serum b12 being due to MTHFR. Is that new?

I thought high B12 was a possible indicator of other chronic diseases like liver, kidney diseases, or leukemia?

Pinkpeony profile image
Pinkpeony in reply to Allyson1

That's a scary thought Allyson1!

My liver is tested often with my thyroid bloods. I don't know about the others.

Thanks for your reply .

Pp

Gambit62 profile image
Gambit62Administrator in reply to Pinkpeony

this would be high B12 in the absence of supplementation.

Supplementation would just mean that it couldn't be taken as an early indicator.

Allyson1 profile image
Allyson1 in reply to Pinkpeony

Sorry I didn't mean to scare you! I think Gambit makes sense.

Gambit62 profile image
Gambit62Administrator in reply to Allyson1

Not sure if it might be a bit of conjecture on my side but do seem to remember that it applied to B12 as well as B9 - but t does depend on exactly which genetic variation is involved - there are some that only seem to affect B12.

Does rather belie the assumption that treatment for MTHFR needs to be treated in the same way for everyone - as it so obviously doesn't as I think you know from bitter experience.

Allyson1 profile image
Allyson1 in reply to Gambit62

True, so much MTHFR is conjecture at this point, we can only make our best guesses and try to make things go as smoothly as possible..it would be interesting to have more information about MTHFR and whether it affects serum B12. But then there is so much individual variation, isn't there!

Pinkpeony profile image
Pinkpeony in reply to Gambit62

Thanks for the reply Gambit.

As far as educating the doctor is concerned , I am still trying to do that with my under active thyroid.

I saw him yesterday before injection time and he didn't have a clue . When I asked if I should have the jab he looked at me vacantly and said it's up to you ?

Needless to say I didn't have it , but maybe I should have.

Regards Pp

Gambit62 profile image
Gambit62Administrator in reply to Pinkpeony

Sure that you wlll be able to rebook if you didn't have it - they only seem to get uppity if you ask for it too frequently.

Pinkpeony profile image
Pinkpeony in reply to Gambit62

Gambit I have recently had some bloods done with Blue Horizon .

Do you know if they would do this test?

Many Thanks

Pp

Gambit62 profile image
Gambit62Administrator in reply to Pinkpeony

Sorry - presume you are referring to MTHFR rather than B12 - may do but if there focus is blood tests then probably not as MTHFR is about genetic variations - plenty of companies that do do the analysis ... though think interpreting it is a long way from being straight forward as it means knowing what each of the genetic variations actually does.

Pinkpeony profile image
Pinkpeony in reply to Gambit62

Thanks Gambit , you are a fount of knowledge .

I am afraid most of it went over my head.

Back to the drawing board and the doctor lol

Regards Pp

Allyson1 profile image
Allyson1 in reply to Pinkpeony

Is it possible an underactive thyroid could be affecting how you metabolize the B12?

Has your doctor checked you for vit d and iodine as well?

Pinkpeony profile image
Pinkpeony in reply to Allyson1

Hello Allyson 1

My vitamin d is fine and supplemented , don't know about iodine.

Something to think about.

Pp

Allyson1 profile image
Allyson1 in reply to Pinkpeony

I have Hashimoto's and my iodine was very low...supplementing made a huge difference. (If you have celiac and are prone to dermatitis herpetiformis, make sure to avoid gluten because iodine can worsen dermatitis herpetiformis.)

I don't know how to dose iodine properly, my doctor prescribed it,

Pinkpeony profile image
Pinkpeony

I don't have Hashis. I was diagnosed Hyperthyroid and unfortunately had RAI and now Hypo .

I am now on a four month trial of t3 added to Levo .

I will ask the Endo when I see him in two weeks about iodine and also b12 ,although this seems to be a mystery to the medical profession 😱

Thank you for your replies

Pp

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