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  • HOW does one figure this out??? suddenly have very HIGH B12 plus am homozygous for FUT2 rs492602 and rs602662. But...I had symptoms of LOW B12 (numbness in fingers, easy numbness in legs)...all which went away with Ben Lynch's combo of adenosyl and hydroxy B12. So to me, the fact that those symptoms improved implies my high B12 is from my methyl mutations of MTRR, MTHFR 1298 and COMT, not the FUT2. HOW does one figure out what is causing this??

    P.S. I had to stop the adenosyl and am only on hydroxy--the adenosyl knocked my B12 even higher.

    - 8 years, 2 months ago

    • FX2372  

      You may have thiamine (vit. B1) deficiency. Without it the body won't be able to use vit. B12 and you will have high serum values. Lithium helps vit. B1 to do its job. See article here: https://www.hormonesmatter.com/high-folate-vitamin-b12-low-thiamine-autism/

      - 6 years, 2 months ago.  

    • PV6416  

      @OO6070: I agree with you and Im in the same boat. The only B12 I can take without getting anxiety and other issues is hydroxy B12. I also am heterogenous on both the MTHFR genes (hence the methylation and detoxification is slowed down), and Im Homogenous on the the FUT2 genes and homogeneous and heterogenous on the COMT and MTRR genes. Have you been able to figure anything out?

      - 6 years, 3 months ago.  

    • MZ7492  

      FUT2 Facebook group!! We actually need more b 12 even though serum is high as well as lithium the help the B12 move into the cell!

      - 6 years, 3 months ago.  

    • IZ7354    1

      I buy methylated B12 to work around this genetic variance. It costs about the same as the cyanocobalamine and you can get it in a B complex was well (with methylated folate). We made sure our daughter did a genetic test when she got married so she would not get folate poisoning from the prenatals (and she has the same MTFHR defect).

      - 6 years, 3 months ago.  

    • WB5935    1

      I find your comment VERY interesting! I have had chronic very elevated B12 levels for over a decade. I also have COMT & MTHFR 677 homozygous mutations & blood smears sometimes show multi-nucleated cells - a sign of B12 deficiency. This all coincides with extreme symptoms of anemia & chronic iron deficiency anemia requiring IV Iron Sucrose to temporarily correct deficiency. I feel as if B12 is available but not absorbed properly. Do you have problems with chronic anemia?

      - 6 years, 7 months ago.  

    • BQ4866    1

      My B12report shows FUT2 rs492602 GG ++ FUT2 rs602662 AA +/+. It says I am likely to have increased B12 levels, due to GG genotype for rs492602 compared to people with other genotypes. Other clinical, genetic or environmental factors may influence this outcome. I actually tested high on my B12 when my dr ran some tests for my thyroid problem. He said he wasn't worried as I should pee out what I don't use! Feel like I need b12 but scared to start taking it again. Trying to understand these reports, think it says I have a methy folate problem too.

      - 7 years, 3 months ago.  

    • XZ1871    4

      Have you checked your TCN 1 &2 genes? They transport the B12 to the cells so you can have high b12 in the blood serum but it may not be getting into the cells. thats what i have. Try reading the book 'could it be b12'

      - 7 years, 10 months ago.  

    • EW4887    1

      @@OO6070 well - i've ordered myself some folinic acid lozenges - hopefully that'll help. i did order some B12 lozenges as well. both seeking help brand..

      - 7 years, 10 months ago.  

    • OO6070    1

      @EW4887, yes, that's what it means. And raising folate levels has helped to get the methylation process going again to break the B12 down for use.

      - 7 years, 10 months ago.  

    • EW4887    2

      When I got tested my B12 seemed "high," but I think what it means is that it's just floating around and not getting absorbed. Probably because I have difficulty breaking it down? This is my understanding of it.

      - 7 years, 10 months ago.  

    • HU7769  

       

      Ha, you got my message fast.. before I fixed it. I failed to see that you had already said in your original message that you had MTHFR snps.. der.. anyway, lol..

      So how much potassium did you take? I have heard you should take extra potassium when trying to fix your methylation but it doesn't say how much and now I am scared to take it. Maybe I was taking too much. I am following Dr Yasko which is probably pretty close to Dr Lynch's protocol.

      - 7 years, 11 months ago.  

    • OO6070    1

      @HU7769, apparently for some of us (can't speak for us---this is about and some others I've observed), we need more folate when we aren't methylating correctly. And yes, I do have a homozygous folate snp that may be active. I know for a fact that when I began to raise my folate (I was on only 400 mcg), something started to kick in. How do I know?? Because I started to require far more potassium...i.e. I was getting more fatigued. So I upped my potassium--fatigue went away. Apparently, when we start breaking things down again as we raise folate, the cells require more potassium. It's not about our serum levels--they will look fine. it's about the cells needing far more as they start breaking things down. I also kept needing more folate for the improved methylation process.

      - 7 years, 11 months ago.  

    • HU7769  

       

      I tried taking potassium and it made me so depressed, I looked it up and depression is a common side effect of potassium, not sure the exact mechanics of why the potassium does that but I stopped taking it and I went back to normal.

      They checked my folate and it was good, are you saying folate should be even higher for the b12 to be accessible/absorbed?

      Are you considered a nonsecretor then?my fut2 snps said I was. I find it interesting that you were able to distinguish what was causing your issue. It is interesting that Methylation rather than fut2 was causing the issue because fut2 seems like it would be the bigger culprit.

      Ps I have edited my answer several times so I apologize if u all got email notifications everytime. Sorry.

      - 7 years, 11 months ago.  

    • OO6070  

      @@UU1579, the solution for me ended up being to raise folate, which in turn helping me to break down the B12 for use i.e. to methylate better. And as i started to methylate better, my need for potassium when up as well. So I would drink 2-4 cups of V8 juice a day to meet those cellular needs. I ended up needing between 2000-3000 mg of folate.

      - 7 years, 11 months ago.  

    • UU1579    1

      I'm in the same boat-very high levels but all symptoms of insufficiency. Also I have all mutations that you have mentioned..Even though I have studied nutrition I do not have tools and knowledge to figure out what's going on for sure..My gut feeling is that i'm deficient despite high serum levels..

      - 7 years, 11 months ago.  

    • XY6426  

      There are bacteria in your gut that manufacture b-12..they can be destroyed (mostly by cause unknown, although drinking alcohol is one of them)...So, you may just have to supplement. Age is also a factor. The older you get, the lower your b-12. I would go gluten free. I think the GMO foods have pesticides in them that are killing all the B-12 producing bacteria. Just my theory.

      - 7 years, 11 months ago.  

    • OO6070  

      @RH2178, my methylmalonic acid was great, yet high B12.

      - 7 years, 11 months ago.  

    • OO6070    2

      @HU7769. ..It's not that the high B12 itself is dangerous; it's what it can mean that's a concern. That one isn't breaking it down for use, so you start having symptoms of low B12. One solution it turns out is taking higher doses of Folate. And you will also require higher amounts of potassium, not due to deficiency, but due to increased need by the cells as methylation starts to kick in better.

      - 7 years, 11 months ago.  

    • HU7769  

       

      I have the same snps and high vitamin b12. It's not dangerous right?

      - 7 years, 11 months ago.