I have High B12 but all the symptoms

[Paolini_Teracini]

I was convinced I had PA- all my symptoms fit. I take methotrexate and am MTHFR C677T mutant, so I take folinic acid. However my blood tests showed a level of 600. Does that mean I definitely don't have it?

[Gambit62 Administrator]

Have you supplemented at all.

Also, are you homozygous or heterozygous?

To be honest serum B12 is a pretty naff test for diagnosing if you have problems with B12 (and the symptoms of PA are down to the B12 deficiency it causes ... though it isn't the only cause of absorption problems that lead to deficiency).

The serum test looks at all forms of B12 in your blood - not just the active forms that are used by cells and it actually tells you nothing about what is happening in terms of getting the B12 to the cells that need it.

The mutation you have affects methylation of vitamins - generally B12 and B9 (folate) - with B9 it can lead to high levels in blood that the body can't use because it can't change them to methylated forms. If you are homozygous then taking folinic acid may not be the best course of action.

This article may be of interest - though can't guarantee the science in it, it does seem to tally with what others have reported in terms of both B12 and B9 supplementation

mthfr.net/mthfr-c677t-mutat...

You can be functionally deficient - lots of B12 in blood but non getting through to cells.

Having the active B12 test might be a better guide ... or getting your GP to look at your MMA/homocysteine levels - both waste products the body can't recycle into useful building blocks if it doesn't have enough b12/B9 in the right forms.

[Paolini_Teracini in reply to Gambit62]

I'm actually heterozygous for the MTFHR A1298C mutation, so I take folinic acid rather than folic acid as part of my methotrexate regime.

I hadn't been taking B12 prior to the testing.

I'll check for the MMA/homocysteine levels- Thanks

[jimister in reply to Gambit62]

Hi gambit,

Can you tell me how you find out if you are homozygous or hetrozygous. Does this indicate what type of b12 you should take?

Many thanks.

[Gambit62 Administrator in reply to jimister]

There are various places that do testing for various genes - including those that affect methylation - I don't have actual details and can't actually remember the name of the lab that people often use

This post refers to one lab

healthunlocked.com/pasoc/po...

just done a search and managed to find the name of the lab a lot of people seem to use = 23andme.

The test will tell you if you have one of the genetic variations that affect methtylation (2 main ones) and if so whether you are homozygous or heterozygous ... and it does seem to affect not just B12 but also folate

mthfr.net/mthfr-c677t-mutat....

[jimister in reply to Gambit62]

Thank you. I have found it. Is it easy to understand when you get the results back?

[Gambit62 Administrator in reply to jimister]

Again, not used or had the test - think there are tools that you can use to help you interpret the results/understand what they mean

[Paolini_Teracini in reply to jimister]

mthfrsupport.com.au

This is a really good web page you might find useful.

[humanbean]

I had high B12 - higher than yours - and lots of symptoms suggestive of B12 deficiency. In the end I threw caution to the winds and supplemented with 5000mcg per day of methylcobalamin and I also take a capsule of Thorne Basic B Complex too, which contains methylfolate amongst other things.

Since starting the above supplements my folate levels in blood are high in range or slightly over. B12 in blood is very high > 2000. And I feel a lot better than I did. Some symptoms I thought were B12 related have reduced quite a lot in severity.

You might find this paper interesting :

qjmed.oxfordjournals.org/co...

[Paolini_Teracini]

Thanks, that's a really interesting article too.

After spending the last 2 days forwarding this info to 2 specialists and the GP, AT LAST the Physician sends back a message asking me to go to the GP for an URGENT Vit B12 injection!!

My doctor’s receptionist, who I’ve been bugging for a cancellation, being the cow from hell, reveals that the doctor has never been given any of my emails and puts me onto the nurse (same herd). If I’m that urgent I need to go the hospital apparently. I know that the hospital will repeat all the tests, then send me back to my GP.

Fortunately there's another clinic within staggering distance of my house. They will see me this afternoon. At which point I promptly burst into tears!! Thanks guys, couldn't have got this far without this forum. This was the link which did the trick:

ukneqas-haematinics.org.uk/...

I'll let you know how I go. x

[Rett713]

Hi try marking your emails to Gp 'Dr .... Private and confidential ' see if that helps someone else shouldn't be opening things marked p&c.

My B12 was 400-539 over past 3-4 years and I have pa (all symptoms and antibodies). That was levels prior to treatment but after pa antibodies confirmed - gp told me results to antibodies test were normal when they were positive. So like the others say you can't go by the B12 serum blood test.

[Paolini_Teracini]

Haha, I did exactly that in the end, Rachael272.

My husband printed it out, put it in an envelope Marked Private and Confidential and hand delivered it. I know receptionists often need to protect the doctor from the local wildlife, but it's not their call to make.

I felt totally awful last night- worst yet. Hopefully that's normal. Suddenly, 24 hrs after my first injection, I feel a faint glimmer of energy returning.

Bring on tomorrow and number 2.