High B12 <2000

[microbiome]

Greetings,

I have a patient with constant high b12, normal folate; normal MMA, normal Homocysteine and does not supplement. Three labs have all shown b12 to be above 2000. I recently did a IFA test. Result came back to 1.0 labcorp has 1.1 as the high end. Patient does complaints of tingling on the legs, and heaviness of the legs.. Occasionally feels tingling of the hands. I've been reading about MacroB12. So I did an immunoglobulin test.

Immunoglobulin G, Qn, Serum 1133 mg/dL 586-1602

Immunoglobulin A, Qn, Serum 134 mg/dL 87-352

Immunoglobulin M, Qn, Serum 141 mg/dL 26-217

Immunoglobulin E, Total Will Follow

Vitamin B12 Vitamin B12 >2000 High

There are no other signs at this point that may point to something else.. Liver enzymes are in the teens, Kidney eGFR 90's.

I'm not sure what to make out of the IFA of 1.0 Seems to me that being that close to the 1.1 range that the level is not optimal.. I'm still waiting on the immunoglobulin E.

I am open to all thoughts.

Best,

microbiome

[Nackapan]

The Pernicious Anaemia offer advice to health professionals.

[microbiome in reply to Nackapan]

Not sure what you mean.

[HeartyGilly in reply to microbiome]

Pernicious Anaemia Society perhaps was meant.

[Technoid]

You may have seen the paper: "pathophysiology of elevated vitamin B12 in clinical practice" but of course all factors must be considered before a conclusion.

academic.oup.com/qjmed/arti...

Nackapan means that the pernicious anaemia society (based in the UK) would be a better contact than this forum for health professionals, the forum posts and responses on this forum are more for the general public as the disclaimer indictates "Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them."

Basically, being that, neither the forum nor its participants are licensed to provide medical advice.

[microbiome in reply to Technoid]

Thanks for the link to the paper. I thought this forum was for practitioners. My apologies.

[microbiome in reply to Technoid]

So I went back to the Pernicious anemia society, and went to their forum, but it leads me back to here.. Do you know where the forum for healthcare providers is found? Thanks..

[Gambit62 Administrator in reply to microbiome]

it is a subsite which can be accessed from the landing page of the PAS site. This is the specific link

pernicious-anaemia-society....

I believe the site only has resources it doesn't actually have a forum.

You could try searching for 'club B12'. I think this is a better bet as functional B12 deficiency isn't really in the remit of the PAS, whereas the remit of clu B12 is much wider.

club-12.org/

There have been cases where people have had high B12 levels as a result of consuming large quantities of B12 without realising it - eg from energy drinks.

In some people it can take a very long time for levels to drop, eg if they have had a B12 shot as a beauty treatment. Although the average is one month for cyano and 2 for hydroxo there is a lot of individual variation and some it can take years for serum B12 to fall. This doesn't mean that the patient can't be functionally deficient and whilst MMA and homocysteine look at two metabolites that can be raised if there isn't enough B12 getting from blood to cells they don't tell the full story on functional B12 deficiency either.

[Sleepybunny]

Hi,

I'm not a health professional.

PAS (Pernicious Anaemia Society) would probably be worth talking to.

PAS Contact Details

(It mentions a number for healthcare professionals)

pernicious-anaemia-society....

PAS have a page for health professionals and they can join PAS as healthcare affiliate members.

pernicious-anaemia-society....

PAS have webinars on aspects of PA and B12 deficiency.

pernicious-anaemia-society....

Bruce Wolffenbuttel is a researcher interested in B12 deficiency who has written many useful articles.

CluB-12 is a group of doctors and researchers who are looking into B12.

They have regular meetings on Zoom.

club-12.org/

[FlipperTD]

Scientist, not medic.

It's below the cut-off for the test; it's negative. What you're seeing is 'noise'; like the hiss you get on a radio when it's not on the station. The test, as such, isn't an actual 'antibody' test, it simply demonstrates an antibody-like effect but doesn't use a specific antibody to an antigen. This could get very technical and confusing, but trust me; the IFAb test, despite it having 'antibody' in its name, isn't a true antibody test.

If you want more, let me know!

[microbiome in reply to FlipperTD]

Thank you very much.. This helps..

[wedgewood]

I have diagnosed PA. ( positive Intrinsic Factor Antibodies ) I do not supplement with folic acid and consume a moderate amount of fruit and veg .But I have lately developed a liking for Marmite . I eat a huge amount. I spread it thickly . My last blood test showed that my folic acid reading as being very high , and it was suggested that I stopped supplementing . I didn’t think about my Marmite consumption, and thought it very strange .

Eventually I looked in to the composition of Marmite. It does contain vitamin B9 naturally , but it is also supplemented with it . This was the culprit for my overdosing on folic acid . It is apparently not harmful to consume folate in its natural form in fruit and veg , but folic acid is another story . Methylfolate is a better choice .

I have now cut down on Marmite consumption!

[Blueoxo]

Hi I recently had my bloods tested at my GP practice. My B12 came back at 2000 but with a note saying no action needed. I think it is expected to be high when on B12 injections. I too get tingling in my arms and legs but this is usually resolved when I have my next injection and the intensity increases leading up to when my injection is due. I am at a loss at the minute as I have been having additional B12 injections in between my usual one at the GP practice (8 weekly) . The extra B12 injections gave me my life back to be honest, although I have had to generally increase the frequency to keep feeling well. This has made me wonder recently where this will take me and I am reluctant to do the injections any more frequently if a B12 reading of 2000 is too high. It seems the more often I have an injection the more often my body needs it to function.

[Jeep13]

not sure what 1.0 means. There are 3 possible readings on an IFA test. Positive, Negative or Unequivocal.

I would request a parietal cell antibody test it is 90+ percent accurate. I also feel that if you are having symptoms it is better to err on behalf of your health even if you must do it yourself. A doctors creed is “do no harm”. If you continue to get pushback from them, Sue, they understand money. If they are harming you by not prescribing B12 injections they are hurting you. Think about if they prescribed B12 and suddenly office visits reduced and symptoms went away they would lose money to something that won’t hurt you or cause more symptoms. They’re out of business.

If you have PA and it is not treated with injections you will die a slow and painful death. (One to three years untreated).

There’s a saying in the communist realm,”show me the man and I’ll show you the crime.”

Doctors is modified, “show me patient and I’ll show you the medication

[microbiome in reply to Jeep13]

Thanks.. I appreciate the input... In this case, I'm the practitioner.. I just don't have much experience with this particular lab. As I stated earlier, other biomarkers were well within range including MMA, Homocysteine, folate. The labcorp shows a range of 0 to 1.1 as normal.. So that's what the 1 means.. Thanks again...

[EiCa]

Have you tried feeding this information into AI? I, personally, have not used it but it seems like a possible source for ideas for unusual cases? Sounds unprofessional but using it judiciously might be helpful.

[Sleepybunny]

Just wondered if you'd looked into Functional B12 deficiency.

MMA, homocysteine and Active B12 may help to diagnose functional b12 deficiency.

I found lots of interesting articles when I searched for

"functional B12 deficiency"

"paradoxical B12 deficiency"

"hypercobalaminemia"

There was an interesting one published in 2022 suggesting an association between paradoxical B12 deficiency and vitamin B2 deficiency.

[microbiome in reply to Sleepybunny]

Thanks.. and yes, I did check for MMA, Homocysteine and all came back way. within range.. Thanks.

[Blais in reply to microbiome]

It’s possible to have a lot of B12 in serum but it may not be available to the patient. For example the patient may have been taking a multivitamin for years containing cyanocobalamin but like many is unable to absorb that type of B12. You could consider an active B12 test. That said, I’d be guided by the NICE guidelines which say where there’s neurological symptoms be guided by the symptoms rather than the blood test and offer B12 injections every other day until no more improvement …

[microbiome in reply to Blais]

Thank you very much.. And I appreciate the NICE guidelines.. I'm in the US so it was a new one to me.. Thanks again..

[Oneash]

Google "high B12 without supplementation" and you'll get a list of things to explore around blood, liver, kidneys and cancer, along with a different sort of autoimmune disorder.

[microbiome in reply to Oneash]

Thank you.. Yes, Google is our friend...