High serum B12, High Active B12, Anaemia, Elevated Liver Enzymes (ALP & GGT)

Hi everyone, I'm posting for first time.

My son (22yrs old) is autistic, with dysmyelination (abnormal/lack of myelin). He has had high serum b12 levels (ranging between 1116ng/L to >1500 ng/L) since 2007. Liver enzymes have always been high (in particular Alkaline Phosphatase and GGT. RBC, Haemoglobin and Haematocrit .

He is not on any vitamin b12 supplements and his diet is restricted. He takes high doses of vitamin b6 in the form of pyridoxal-5-phosphate to control seizures.

I am worried that the B12 is this high, despite no supplements and in light of his myelin situation (which i understand is connected to vitamin b12) what could be going on? He has been anaemic for a number of years despite iron supplements. He has always been very lethargic prior to the anaemia and since he was born.

Is anyone able to shed any light, ideas on what any of this means please?

8 Replies

  • gmouton.com/img/fichier_55a...

    You might find this of interest. Certain variations of small intestine bacteria overgrowth can result in raised b12 levels and can be resolved by adjusting the diet.

  • Thank you so much Steap :) This is very helpful and I will include this with my letter to the Gastroenterologist and GP.

  • beyonddisease.com/sibo-and-...

    This work suggests a link between SIBO and raised liver enzymes.

    It's also suggests that probiotics can play a role in helping to reduce the raised liver enzymes.

    There are of course many theories floating about there but it does seem plausible that gut dysbuosis could be contributing to at least some of the issues you raise.

  • My son is planned to have an Gastroscopy on 15th March under general anaesthetic so I can use this article to see what the Gastroenterologist thinks.

    I note that one of the SIBO tests is a jejunal aspirate which would be brilliant if it could be done whilst under this scope, though I think the endoscopy only goes as far as the duodenum. Unfortunately my son would be unable to do the hydrogen breath test which I think is the only other test I've come across.

    Thank you so much for this info.

  • it may be a genetic problem with metabolising folate and B12 rather than directly related to diet. Liver problems can also raise B12 levels.

    Possible that he may have a functional B12 deficiency - MMA and Homocysteine will be raised if this is the case.

  • Yes, it could be genetic. I brought this up with the neurologist in January, he said he'd look into the genetic side of things and will get my son onto the NHS "genome project", but I know that this will be a stretched out process (and we still not heard from him!). So in the meantime, I thought of looking at any other possible causes.

    We've done the urine MMA test and the Homocysteine through the GP, but don't have results yet. However, I think Homocysteine may not be accurate as my son is on very high doses of vitamin B6 which I think is involved in bringing Homocysteine down (?!)

    Thanks for your reply.

  • the process that recycles homocysteine uses B6, B9 and B12. I suspect that high B6 isn't actually going to affect the usefulness of the test as all 3 are needed - aware that it becomes a difficult test to interpret if B9 (folate) is low as it isn't clear which of B12 and B9 is causing the problem but if B9 is high then it becomes more straightforward.

    B12 deficiency causes a different type of anaemia from iron deficiency.

    Generally high levels of B12 aren't a problem - though elevated levels can be an early indicator of other problems (eg liver and kidney). In some people elevated levels of B12 in serum can cause an auto-immune reaction which stops the B12 getting from blood to the cells where it is actually needed - functional B12 deficiency - but you'd need to look at his symptoms but the symptoms do overlap with iron based anaemia and a lot of other conditions.

    Hope that you manage to get a resolution soon.

  • Thank you for the explanation.

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