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B12 - Too High????


Roselover

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Ok... I've read lots about low B12. Read the thread about B1...

But I was tested again for B12 levels and my levels are way way above normal!

Reference range for normal [211-911]

My B12 is greater than 2000!!! yes two thousand.

My PCP had no clue what that meant or if it was harmful or anything helpful.

ANYONE - have any info on this? Doctorquest? Any articles that anyone can find? Who would I ask?

NO... I have not had supplements or shots. In fact, my nutritional intake is poor due to my gasteoparesis.

Thought someone here might be able to give me some input.

~Roselover

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Guest tearose

HMM,

We need nutritionist gena.

Maybe you are eating a food high in B12?

Maybe B12 is absorbed slower due to your gut issues?

What are the side effects of your levels?

best regards,

tearose

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in general elevated B12 levels aren't a big concern up to a point, though i'm not sure at what point it becomes something that should be paid attention to. i do know that, while unlikely, there can be such thing as too high a level. or perhaps more accurately that a really high level can be indicative of another issue. i do know of one diagnosis that can involve elevated B12 b/c of knowing someone with the diagnosis. i'm guessing there are other possibilities, including that it means nothing at all, but the one i'm familiar with is called Polycythemia Vera, or PV. the diagnosis is made based on a constellation of abnormal blood work/ testing though, NOT just elevated B12. i think the very simplified idea of PV is that it's an overproduction of red blood cells (amongst other things) but for more info i'm sure it would be easy do a search for the full set of diagnostic criteria, etc.

i do know that my doctors - many of them in various specialties - as well as dieticians i've encountered have no concern about my B12 levels getting too high. i started out very deficient but they don't monitor me on any sort of regular basis and one autonomic neuro actually told me that he'd like my levels to be higher than normal ranges. my primary didn't entirely understand his reasoning but also didn't have any concern about it causing problems.

so in short i don't think elevated B12 is nearly as concerning as some other elevated blood levels could potentially be but the fact that you don't take any supplements and - if anything - would perhaps be expected to be deficient b/c of GI issues COULD have meaning in regard to something else going on. and i'm almost 100% certain there is nothing related to gastroparesis/ slow motility that could cause elevated levels. if i were you i wouldn't worry but would figure out a way to pursue more of an answer than your PCP was able to provide. there is nothin

let us know if/ when you find out more!

;) melissa

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Polycythemia Rubra Vera can be associated with high B12 levels. If you have had routine bloodwork done, polycythemia would be picked up by a very high haemoglobin and red cell count, and often high white cells and platelets too. As polycythemia is associated with a high blood volume (so high that the treatment is often removing blood to reduce the volume and haematocrit) it would be unusual for someone with POTS symptoms to also have polycythaemia.

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As others have said, high vitamin B12 level is not generally thought of as particularly concerning, although I've always wondered about the cause when I saw these elevated levels in my patients. One way to explore this further would be to order a vitamin B12 cascade, which includes methymalonic acid and homocysteine. Another, more in-depth way, is to analyze B12 level in the red blood cells directly. Do you have any other abnormalities in your blood work, like anemia for example? Do you take a multivitamin? Do you supplement your diet with any nutritional drinks/shakes/bars that may be high in B12? Have you been treated with erythropoietin?

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As others have said, high vitamin B12 level is not generally thought of as particularly concerning, although I've always wondered about the cause when I saw these elevated levels in my patients. One way to explore this further would be to order a vitamin B12 cascade, which includes methymalonic acid and homocysteine. Another, more in-depth way, is to analyze B12 level in the red blood cells directly. Do you have any other abnormalities in your blood work, like anemia for example? Do you take a multivitamin? Do you supplement your diet with any nutritional drinks/shakes/bars that may be high in B12? Have you been treated with erythropoietin?

Thank you Doctorquest and everyone who added their input. I've read it all... and at least there doesn't seem to be anything any of us know about that would cause such high b12.

As for your questions DQ - these tests were run by a neurologist and she didn't order blood count. No on the erythropeoietin. Nothiing in my diet that I can think of....

It seems that it shouldn't be connected to my gasteoparesis, because it's in my blood - so it's being absorbed... but maybe a problem in being used???

Well... if anyone comes accross an idea... let me know... but for now, I won't worry about it.

Thanks for all the caring posts!

~Roselover

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