Active b12 vs total b12: I had some... - Pernicious Anaemi...

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Active b12 vs total b12

happyp profile image
6 Replies

I had some vitamins and minerals tested, and my active b12 came back as 46.6 pmol/l with range of 37.5 to 188. I can't find much info on the active b12 test. Or what optimal should be, only the total b12 test. My folate is also low at 7.59 nmol. I've had two years of increasing neurological symptoms, diagnosed as dystonia. I have tremors, pins and needles, weakness, I have also had terrible stomach issues, I struggle to eat, if I eat more than tiny portions of easy to digest food, I am in so much pain in my upper abdomen. I bought a vitamin b spray to supplement because I cannot digest any vitamin pills. Its the betteryou spray, I use the vitamin d one and it's increased by vit d levels to almost optimal after being deficient.

Does any one know if this will be sufficient? And what the optimal range for active b12 is? Or if this sounds like pernicious anemia.

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happyp
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fbirder profile image
fbirder

"46.6 pmol/l with range of 37.5 to 188"

The normal range for the lab that did your assay is 37.5 to 188.

I would say your Active B12 is in the grey area. Do you take any supplements.?

Your folate sounds as if it is normal (what was the range and units for your result).

Your dystonia, and pins and needles are possible symptoms of a B12 deficiency. Your stomach problems could be caused by the gastric atrophy which is the underlying cause of Pernicious Anaemia. Have you seen a gastroenterologist and a neurologist?

happyp profile image
happyp in reply to fbirder

Forgot to include the folate range, sorry its 8.83 -60.8. So its just under the minimum

I've had a brain mri, spine mri, ordered by a movement disorder specialist. My brain looks fine. My spine has a bulging disc in the lumbar region, a bulging disc in the cervical region and a narrowing of the spinal canal in the cervical region. Im told its not causing my symptoms. I am waiting to see a gastroenterologist. But thanks to covid, the referral is still just waiting around, since 2019.

I haven't been able to take any b supplements due to the stomach issues. And since I barely eat, that is likely not helping. Gastric atrophy sounds interesting, the symptoms do sound like mine. I am also iron deficient.

Bonjourtristesse profile image
Bonjourtristesse in reply to happyp

Have you tried these? They have good results for ibs type symptoms:

boots.com/boots-good-gut-li...

They have much improved my tolerance to foods and stomach pain and digestion.

olicana1949 profile image
olicana1949

I cant answer your questions as I'm just B12d diagnosed and on a steep learning curve. But where do you get your "active" B12 levels checked, the NHS as far as I know only tests overall levels

happyp profile image
happyp in reply to olicana1949

I used thriva. They send you tubes and you use finger pricks to fill them.

olicana1949 profile image
olicana1949 in reply to happyp

Thanks, I have seen Thriva advertised, I'll check them out.

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