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Help a lost soul with MTHFR issues in the UK?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Maggie28, Oct 30, 2013.

  1. Maggie28

    Maggie28

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    I am compound heterozygous for MTHFR, and have been doing the best I can to figure things out for myself; I have been unable to find any kind of practitioner near to where I live (the wilds of Yorkshire in England) who has any clue whatsoever about methylation issues. I'm at the point where I really need some advice, but don't know who to ask.

    I have been taking 800 mcg of Methylfolate (Solgar) and 5000 mcg of Methyl B12 (Jarrow) daily for several months now, since getting my original results, along with a few other carefully chosen supplements. A few weeks ago I read Fredd's protocol, and introduced some new things, specifically Potassium and Fish Oil with high Omega 3. I also took B-Right (Jarrow) but thought I was overdoing the B12 dose given that it was on top of the Methyl B12. I ordered the 'country life' supp (sorry, can't remember the particular name right now) but decided against it when I realised it contained folic acid which, of course, is out of bounds for me.

    When I started on the methyl forms, I felt like a completely new person; energised, sleeping really well, amazingly good mood etc, but over time this has gradually dissipated, to the point where I am beginning to feel like I am crashing. It may be that this is part of the detox process and I have to work through it, but I'm concerned that I might be doing something wrong supps wise, through ignorance.

    If anyone could take a look at my genetic genie results below and comment, I would be very, very grateful.

    If it helps, as well as the things listed above, I'm taking the following:

    vitamins C & D
    Magnesium (through skin)
    Zinc
    Turmeric
    Glucosamine
    Eyewise

    So here are the Genetic Genie results:

    COMT V158M +/-
    COMT H62H +/-
    COMT P199P -/-
    VDR Bsm -/-
    VDR Taq +/+
    VDR Fok-I (not found)
    MAO A R297R +/-
    ACAT1-02 -/-
    MTHFR C677T +/-
    MTHFR 03 P39P +/-
    MTHFR A1298C +/-
    MTR A2756G -/-
    MTRR A66G +/-
    MTRR H595Y -/-
    MTRR K350A -/-
    MTRR R415T -/-
    MTRR S257T not found
    MTRR A664A +/-
    BHMT-01 not found
    BHMT-02 -/-
    BHMT-04 -/-
    BHMT-08 +/-
    AHCY-01 -/-
    AHCY-02 -/-
    AHCY-19 -/-
    CBS C699T -/-
    CBS A360A -/-
    CBS N212N -/-
    SUOX S370S not found
    NOS3 D298E not found
    SHMT1 C1420T +/-

    Any ideas?
  2. Critterina

    Critterina Senior Member

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    Arizona, USA
    My first thought is to wonder whether you're getting enough metafolin, considering your SNPs. Have you tried increasing it? I was given that ratio of about 1 mg mfolate to 5 mg mB12, and it wasn't right for me. I'm doing much better now with 3 mg of each, spread out to 3 doses during the day. Also, take Vitamin C well away from the mfolate and the mfolate on an empty stomach. If you're not doing it already, those are some gentle tweaks that might help.

    also, have you tried stopping the glucosamine? just for a trial?

    Best wishes for feeling great again!
  3. Gloria H

    Gloria H

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    South Dakota
    Freddd has introduced us to the concept that so many people are B12 & folate deficient. But as we use B12 & folate, sometimes we run into another deficiency, something that works with B12 & folate. You didn't mention using L-Carnitine Fumerate, part of Freddd's "Deadlock Quartet". Check the link below for other ideas of how to keep your recovery going:
    http://forums.phoenixrising.me/inde...g-so-far-what-does-it-mean.23427/#post-358705
    Blessings to you!
  4. caledonia

    caledonia

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    Cincinnati, OH, USA
    You actually have some pretty clean looking SNPs outside of the double MTHFR mutation and a couple of MTRRs (B12 recycling).

    I believe you're experiencing metal detox (a good thing) and just need to slow down methylation by reducing doses until you're comfortable. Even if you totally stopped the supps, methylation will keep cranking for awhile (could be weeks).

    So I suggest stopping until you feel comfortable again, then restarting at much lower doses. You will still be detoxing even though you can't feel it. You can gradually ramp it back up again as tolerated.
  5. I agree about the L-Carnitine Fumerate, adding that and a small quantity of adenoB12 has helped me a lot.

    I am UK as well, so let me know if I can help at all!
  6. Maggie28

    Maggie28

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    Thank you, kind people.

    I've ordered the L-Carnitine Fumerate (and some adenoB12). Otherwise, I'll use trial and error to find out what works for me. Today I tried upping the folate quantity, but felt worse than ever (but had already taken the usual high Methyl B12 does before I'd read these replies). Will experiment with stopping altogether as you suggest, Caledonia, and have now stopped the Glucosamine (thanks for that suggestion Critterina).

    Al, have you managed to find a practitioner here in the UK? I told my GP about my MTHFR results, and he said "What's that?". I then saw a nutritionist who seemed reasonably up to date, but I had to educate him about it.

    One thing I just can't work out: I read over and over again that folic acid is to be avoided, yet it is in Yasko's 'all in one' multi-vitamin as well as others I've seen recommended. What's that all about?
    overtrain likes this.
  7. I havent even mentioned to the GP!!!!
    I avoid Folic acid - I take a B plex (Bio care) which contains 50mg of B1,2,3,5,6 and get my folate from Doctors Best quatrefolic.

    Which adenoB12 did you buy?
  8. Maggie28

    Maggie28

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    I bought Pure Bio (Pure Encapsulations?) capsules - 1000 mcg of adenosylcobalamin and nothing else in them. Wasn't quite sure whether to get them or a liquid version from another company, but that was all I could find.
  9. I am not sure about liquid - given that the tablets need an hours in contact with the inside of the mouth I am not sure how one would achieve that with liquid!

    I ordered from iherb in the end - takes a few weeks, but MUCH cheaper than UK prices (unless customs intervene of course!)
  10. Do you follow MTHFR Support on facebook ? she posted :

    "I will be in the UK November 20th through the 28th. I am planning on getting a meeting together. Will post in a few days with details. ~~Sterling"
  11. Maggie28

    Maggie28

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    Oh, very interesting, thanks! I'm not a fan of FB but will make a point of seeing where she's going to be. I bet it's London though.

    I've just had a look on i-herb - is it this one you get? http://uk.iherb.com/Thorne-Research-B-Complex-12-60-Veggie-Caps/18126 You are right - it works out a lot cheaper. Do you find it effective? Think I'll get this in future. So glad I've met you!

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