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Would appreciate any insight on this please. Am a newbie!

R0llrolls10 profile image
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Positive for antibodies to Intrinsic Factor, extensive neurological involvement, but high active b12 - can anyone explain the latter? I have been supplementing for years with b12 spray, for years, on advice of functional medicine Dr.

Many thanks in advance for your replies.

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R0llrolls10
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Nackapan profile image
Nackapan

If you've been on supplements thars what's showing up on your bloods If on very high doses perhsus you are able to absorb enough to function.?

Depends how you feel

The high levels may not be reaching cellular level.?

Other tests csn be done . Others csn explain better thdn me.

Usually with PA you need b12 injections.

Some, a very few csn cope on high oral doses of b12 .

R0llrolls10 profile image
R0llrolls10 in reply to Nackapan

Thank you! My symptoms are severe so guessing that in some way I’m not able to process it, at a cellular level?

fbirder profile image
fbirder in reply to R0llrolls10

Or your symptoms aren't caused by a B12 deficiency.

Ask doc to check your MMA levels. If you're not processing B12 at the cellular level then MMA will be high.

R0llrolls10 profile image
R0llrolls10 in reply to fbirder

Thank you so much. Will do. x

Nackapan profile image
Nackapan in reply to R0llrolls10

Keep us posted.

As you've a diagnosis of PA it does need lifelong effective treatment.

Your doctor hopefully will do your MMA levels and get to the bottom of it with as many tests as needed.

T C

Bellabab profile image
Bellabab in reply to fbirder

For information other readers.urmc.rochester.edu/encyclop...

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Bellabab

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Cherylclaire profile image
CherylclaireForum Support

MMA level in bloodstream becomes raised when B12 deficient because MMA links with B12 -so if a shortage of B12, MMA will begin building up. Once B12 replete, MMA quite quickly starts linking up and drops back to a normal level. A loading dose of 6 B12 injections should usually be sufficient. [This is the simplified version since I am not a scientist.]

Most of the time, this is what happens.

If there is a renal problem, MMA can be high- but this can be eliminated as the cause by a blood test.

It can also be naturally higher in the elderly. (Warning: how "elderly" is determined seems to vary - I have read a paper where 60+ is mentioned )

The other reason is small intestine bacterial overgrowth (SIBO) -which produce propionic acid which converts to MMA. These bacteria also feed off B12, among other vitamins (I seem to remember the others as being fat-soluble) . You can get a fasting breath test to determine whether SIBO is present.

Functional B12 deficiency, with all else eliminated, can show as high/normal B12 level and high MMA level. This would indicate a problem at tissue level. Although levels above 271 nmol/L are above the normal range, values of 271-450 nmol/L might be considered as "borderline".

Despite having B12 injections which brought my plasma level from 196 ng/L to over 2000 ng/L in four months, my MMA was 351 nmol/L, and my B12 deficiency symptoms did not reduce/disappear but got much worse when on an injection every 3 months. My GP had my MMA tested because she suspected that my poor response to B12 injections was due to functional B12 deficiency - The blood test laboratory confirmed this diagnosis. The test is not done by all hospitals, my GP had to try three times.

She considers raised MMA to be rare, and has seen it twice - the other patient was diagnosed with functional B12 deficiency ten years before me, which is why she knew what to test for, what to look for and what to eliminate first. MMA remained at between 350 and 400 nmol/L for the next three years, despite frequent B12 injections. I was told by Haematology this was "raised" (not high) -and that this might just turn out to be my normal level.

Except that it wasn't. Eventually, on the 6th MMA test in 2019, my level finally dropped to comfortably within range. Due entirely I'm sure to frequent B12, which I now inject myself.

Improvements were slow. I was once advised to continue with what I was doing, to be persistent - and warned that it would take years.

B12 spray did not work for me at all.

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