Advice re newbie and adenosylcobalamin deficiency

Hi all, I've been reading lots of posts and gaining lots of great advice. I wonder if someone could help me with further info. I have resorted to private functional medical support to help heal my body from autoimmune issues over the last 3 years. One of my tests came back on urine test that methymalonate was high and that adenosycobalamin insufficiency was reason. Functional doctor said to inject b12 (every day for a week then every other day for 3 weeks). Unfortunately I cannot currently get a hold of this doctor! I ordered hydroxocobalamin from Germany and injected one week daily then so far another 2 injections every other day. I have neurological symptoms; numb feet, numb lower legs, numbness in arms (off and on), vision issues, wobbly gait, numbness on face and scalp at time (refused neurology appointment). My question is should I be supplimenting orally with adenosylcobalamin as well. I haven't seen any big difference yet (know this is normal and not expecting changes yet). My feet seem to be prickling :) some symptoms are increasing today but also think this may be part of the process? Not sure whether to try methyl injections as unsure if I'd be okay with it? I also have hashimotos in a mild form. Thanks so much.

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  • The hydroxocobalamin that you're injecting will be converted into adenosylcobalamin in your cells. There should be no need to supplement with oral adenosylcobalamin. The same applies to methylcobalamin.

    ncbi.nlm.nih.gov/pubmed/258...

  • I just want to back up what fbirder has said about there should be no need to supplement with oral forms of cobalamin, as the frequency and number of injections you are doing should be more than enough.

    In addition, I note from your posts a few months ago on Thyroid UK that your blood tests in June 2016 (?) showed B12 at 839 (180 - 2000); ferriton at 19 (15 - 200) up from 14; and vit D 78 (50 - 170).

    So you have started the B12 injections from a presumably still fairly good serum B12 level. Were you actually supplementing B12 before the tests?

    I am no expert and there are much more experienced people on here such as fbirder, but I actually find this level of serum B12 slightly at odds with the reason given for your high methymalonate that this was due to adenosycobalamin insufficiency.

    Perhaps someone can comment on this for both of us?

    You are still presumably continuing to treat your Hashimotos, remaining on a gluten free diet for IBS, and supplementing iron, selium, magnesium, zinc, milk thistle, probiotics, and Vit D.

    However, there is one thing I have not seen mentioned - your folate levels or whether you supplement this. Folate deficiency can also cause many of the same symptoms as you describe.

  • Hi thank you for message. Re previous blood tests; yes I would have been supplimenting b12 at the time for quite a while; wasn't given advice to come off them unfortunately. My understanding is that the mma test can pick up b12 deficiency in ways that the serum test doesn't (I've bought the could it be b12 book since having these blood test and this seems to back this up?). The book also mentions that hashimotos and b12 deficiency frequently go hand in hand. Just looked up my folate test from October last year and it was 30.98 in reference range of 10.4 - 42.4. I am continuing to treat my hashimotos with how you have described above, getting absolutely with gp's etc hence taking my health into my own hands :) It's a tangle of frustrations and brick walls

  • metabolism of B12 is wonderfully complex and problems can happen in several places. First you need to get B12 from your food into your blood, then you need to get it from your blood into the cells that use it and then the cells need to actually process it and things can go wrong at all levels. MMA is a secondary marker that provides information about what is happening at the cell level.

    Cells use two types of B12 - methyl and adenosyl. people can convert hydroxo and cyano to both forms (though there are some genetic variants that can affect how efficient cells are at doing this - but that just seems to be easily overcome with slightly higher doses).

    Your initial levels of B12 are quite high - so may be that supplementing in the first place has complicated things with a functional deficiency a problem with getting B12 from blood to cell - but most effective treatment for that seems to be even higher levels of B12 which is what is going on at the moment.

  • Thank you gambit62 for your reply it is really appreciated :) am I right in that you are suggesting I continue with the course of action I am on an the increased level of b12 should help the conversion at cellular level? Is this the same issue that is referred to as methylation?

  • yes, suggest you continue as you are.

    I am most definitely not a biochemist. B12 is involved in methylation processes in cells -

    this article explains some of what is going on

    ncbi.nlm.nih.gov/pmc/articl...

    but its quite technical and I couldn't claim that I've got my head around it totally.

  • Sally Pachlok ("Could it be B12?") recommends supplementation as well as injections, and it seems to be a case of finding what works best for you. I personally find Jarrows Methylcobalamin 5000 mcg works well (good reviews on Amazon for neurological symptoms).

    stichtingb12tekort.nl/surve...

    "After a year

    The need for quick and correct treatment is emphasised further by the fact that after a year of treatment only 4 % of patients are fully recovered. Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately."

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