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CFS/Crohns/Coeliac C766T ++ but can feel well with folic acid?! How big a deal is MTHFR?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by parabola, Jun 14, 2016.

  1. parabola

    parabola

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    Ok this is a brief timeline from when my health problems began up until now. I’d like to know your thoughts on how much you think homozygous MTHFR could be playing a part here, despite my unusual tolerance of folic acid…

    2003+ - IBS symptoms, possibly triggered by taking the combined pill (to help with excruciating period pain which I was told was normal)

    2006 - Diagnosed with CFS after bad EBV infection

    2009 - positive blood test for coeliac disease, but negative biopsy

    2011 - ‘IBS’ symptoms worsened to the point of demanding a GI referral- coeliac bloods raised again and positive biopsy this time. Colonoscopy also showed ulcerations; finally diagnosed with Crohn’s and coeliac disease. Ultrasound investigations into abdominal pain incidentally found ovarian endometrioma so my horrific period pains could finally be explained by endometriosis. Also diagnosed with folate deficiency, prescribed 5mg of folic acid- did some research and found about MTHFR, decided not to take it. Prescribed mesalazine which damn near killed me (all the symptoms of salicylism), metronidazole did nothing but make me sick as a dog.

    2012 – Prescribed prednisolone, felt 100% human again for the first time in years! Sleeping like a baby, brain fog lifted, creativity and memories came flooding back. Tapered off and began paleo diet- anything to avoid azathioprine. Maintained about 75% wellness on paleo, Crohn’s symptoms completely controlled but only if I was so strict that I could barely eat anything- lost too much weight, sick of meat.

    2013 – Sick of struggling (and starving), prescribed Elemental E028 diet. Felt about 90% well.

    2014-16 – Mainly paleo + rice but relaxed and included conventional gluten free food items for convenience, maybe one meal per day. Brief periods of feeling like I’m improving, then everything crashes down around me again, usually (but not always) precipitated by a virus or extreme stress/pressure. Journal-keeping like a boss, no obvious causation when I experience improvements. React to stress with ‘adrenal’ type symptoms.

    Also been taking LDN from 2013 onwards. I’m not sure how much it does, but I know that I get some weird old anxiety symptoms come back if I skip it for a while, and it seems to hold off ‘full blown flare’ so I’m happy to stick with it for the foreseeable.


    ----

    Recently I started to get worse again and really unable to handle stress, bad adrenal symptoms (insomnia, sweats/shivers/chills, very weak and shaky worse in the mornings) looking back through my diary I realised that I’d not taken my weekly dose of Country Life Active B12 Dibencozide sublingual (200 mcg Folic Acid 200 mcg + 3000 mcg adenosylcobalamin) for over 4 weeks. Now I can’t remember how I came to compromise on the folic acid content, but I think whatever research I’d done at the time suggested that AdoCbl was by far the best form to take, and I couldn’t find another in my price range which I trusted to be gluten free.

    I have also had folic acid in the Elemental E028 drinks in the past which would have been giving me daily dosages of 334 mcg Folacin (I think this is basic synthetic folic acid?) + 8 mcg cyanocobalamin, spaced out across 8 cartons of formula. I felt wonderful on the drinks, almost 100%, they really gave me my life back for a while.

    Yasko methylation panel results:

    SHMT / C1420T -/- G
    AHCY / 1 +/- Hetero
    AHCY / 2 +/- Hetero
    AHCY / 19 +/- Hetero
    MTHFR / C677T +/+ T

    MTHFR / A1298C -/- A
    MTHFR / 3 -/- C
    MTR / A2756G +/- Hetero
    MTRR / A66G +/- Hetero

    MTRR / H595Y -/- C
    MTRR / K350A +/- Hetero
    MTRR / R415T -/- C
    MTRR / S257T -/- T
    MTRR / 11 +/- Hetero
    BHMT / 1 -/- A
    BHMT / 2 +/- Hetero
    BHMT / 4 +/- Hetero
    BHMT / 8 +/- Hetero

    CBS / C699T -/- C
    CBS / A360A -/- C
    CBS / N212N -/- C
    COMT / V158M -/- G
    COMT / H62H -/- C
    COMT / 61 -/- G
    SUOX / S370S -/- C
    VDR / Taq1 -/- C
    VDR / Fok1 +/- Hetero
    MAO A / R297R +/- Hetero
    NOS / D298E +/+ T

    ACAT / 1-02 -/- G

    So does anyone know how I could be homozygous C677T, but able to feel better (or even well, in the case of the elemental diet) when consuming folic acid?! All thoughts very much appreciated, and thank you for reading if you got this far!
     
  2. PeterPositive

    PeterPositive Senior Member

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    Folic acid can work with MTHFR as well. I have the same homozygous defect, and I was found with extremely elevated homcysteine which was causing all sorts of issues. At the time I didn't know about MTHFR and my doc gave me standard folic acid, which did lower the homocysteine by 80%.

    I am not sure how accurate is the information floating around about MTHFR. :rolleyes::)

    Surely there are better forms of folate than folic acid, and taking methyl-folate has helped me pushing the homocysteine down a few extra notches.

    Btw, folate is just one 1/2 of the story, B12 is also necessary for people with this defect.

    good luck
     
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  3. PennyIA

    PennyIA Senior Member

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    I know I took Folic Acid for years with slowly degrading health issues that I would NEVER have identified as relating to the folic acid.

    So, I think the big answer is that there's still too much unknown about all of it.

    My homocysteine levels dropped with the folic acid (I too had serious issues as a result of high homocysteine levels)... but my health worsened as well. I can say it certainly didn't help me feel better.

    That said, I can also take cyanocobalamin and feel better for about a month before I crash. Somehow I picture some process which acts like a beaver's dam... sure, the stuff is still flowing at the start of the build up... but after building and building and building eventually the process doesn't work correctly any longer.

    Right now, it seems like all of this is still very much experimental on a case-by-case basis until this is taking more seriously and more studies are done to figure out all the different factors.
     
  4. parabola

    parabola

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    Thank you for your reply! So you think that it's not particularly harmful to us, possibly beneficial to supplement with 5MTHF in addition, but if feeling good with some folic acid then no need to cut it out? I've never tested my homocysteine, maybe I should. I seem to remember reading that measurement is time sensitive since it degrades quickly, so I'm not sure how that would work with the available 'mail order' tests (I don't think my GP would be on board). How did you test yours?
     
  5. parabola

    parabola

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    Thank you for your input, it's good to get another perspective! I suppose this could explain my cycles of thinking I'm getting better then crashing again? I like the beaver's dam analogy. Can I ask how you tested your homocysteine levels too, and which symptoms you can attribute to it being raised?
     
  6. PennyIA

    PennyIA Senior Member

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    Homocysteine levels were tested in the hospital initially, and then subsequent blood draws later as I was being hospitalized with a pulmonary embolism and high homocysteine levels are a contributing risk factor.

    Folic Acid, b12 (cyanocobalamin as I didn't know anything about MTHFR) and b6 (not the p-5-p version)... were prescribed.

    For the first two months I was still recovering from the blood clot and could feel myself get stronger with time.

    BUT then around the four month mark post-blood clot, I started to get worse. I suffered from dizzy spells, fatigue, whole-body aches, calf cramps, low-grade fever, numbness and tingling in my extremeties, chest pain, PEM, etc. and it would get worse and worse until I met all the conditions to qualify for a diagnosis of CFS in the US.

    I thought I was having side effects from damage after the blood clots. The doctors thought I was seeking attention. I did find out many years later that I was suffering from B6 toxicity... and while the doctors would keep repeating that it was impossible to become toxic on the low dose I was taking - I am of the mind that if you have certain types of methylation defects, that it's possible that the dosage to cause toxicity might vary from person to person.

    None of those symptoms existed prior to taking those three vitamins.

    I have since tried cyanocobalamin as an injection ... and sure enough, I felt pretty good for about a month. Then a pretty big crash followed even though I was very careful about pacing myself.

    Methylation supplementation is the only thing that has helped (at least a little). Though I still have issues tolerating P5P so I haven't gotten it all sorted out.
     
  7. parabola

    parabola

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    Wow that's insane- what dosage B6 were you on?! I know they put about the numbness and tingling on the label of one I had in the past, put me off taking it. Have you tried any of the other B12 injections? I tried hydroxocobalamin injections for a while but didn't notice any improvements, possibly slight worsening.
     
  8. PennyIA

    PennyIA Senior Member

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    I was taking a single dose a day of 50 mg. Per the 'official' doctor's - it takes a dose of 200 mg daily to cause toxicity.

    FWIW - I believe there is probably a genetic relationship - as my mother ALSO tested toxic on a 50 mg dose.

    I haven't tried the other injections due to the instability of hydroxocobalamin as well as my own doctors being very dismissive of MTHFR.

    I have tried the methylcobalamin sublinguals - but was taking expensive frequent doses and seeing only mediocre improvements at high cost. I've also tried methylcobalamin oils as well as hydroxyl/adenosyl cobalamin mixed oils. And I think they help me more than the rest have.

    My issue is that I still have something out of sync or not balanced or missing or too high or something. I'm getting some rare symptoms (pea-sized lumps forming under my skin - not visible, but painful and right at the muscle tissue layer - between 3-4 at the start to 100's if I don't change something)... and while I haven't figured out the cause exactly - when I ramp up my meds I feel great for a bit until those lumps start forming and I have to stop supplementation for weeks or months to get them to go away again. So much fun trying to sort out what's going on. I feel like I need to go audit a few bio chemistry classes.
     
  9. PennyIA

    PennyIA Senior Member

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    Another interesting note is that there is no toxicity range with B12 nor Folic Acid - as I don't think science has caught up that some of us circulate the synthetic forms and that those aren't getting utilized. The assumption is that if there is more than you need, your body has processes that can break it down and eliminate it. However, if that process is part of the thing that's broken? Well, then ... it seems like it might not be all happy path any more. I test off the charts for folic acid and b12 all the time as well. Unlike B6 toxicity, there's no hard-fast symptoms documented for too much unusable folic acid or b12?
     
  10. parabola

    parabola

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    I think the labels I've seen have said 25mg long-term could result in those symptoms! Sounds like someone not wanting to admit negligence. Interesting you should say that as I was told that my B12 were 'very high' a couple of weeks ago when my GP ran a bunch of tests, I'd only been taking that sublingual once a week!

    Re: your skin lumps- you don't have a 'marfanoid habitus' do you? Only because MEN2b sprang to mind although I think those might be specific to the submucosal layer (I know this as I look marfanoid so have been reading up a lot lately)
     
  11. PennyIA

    PennyIA Senior Member

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    I don't think so - none of them are visible to the naked eye - though they can be felt under the skin like a little pebble that can be moved. And they seem to be located along my upper/lower arms - upper thighs - and some along my ribs/collar bone, etc. And at 5'5" and a little chubby - I do have long fingers and toes - but not really the marfan body type.

    I'm actually suspicious that they might be something weird with the lymph nodes. One of my friends on another board recommended that I mark them with magic marker once... and sure enough, in the morning after a full nights sleep - they weren't all in the same place when I woke up... and some would fade with rest, some grew with activity... but breaking the cycle seems to require that I stop supplementation. They seem to semi- follow the lymph node body maps... ish... and that certainly is something that is designed to swell and shrink ... but it's not lymphoma as they shrink too quickly.

    I did that the first time not knowing what would help but desperate to try anything. And within about a month they faded. More 'outbreaks' since seem to get staved off if I stop supplementation. Starting supplementation too soon afterwards seems to trigger a rapid response. So, something isn't going right somehow -just not sure how to figure out what to do as it's far more complicated than take x pill and get bumps, stop taking x and no bumps.

    I am however, debating if I might have a connective tissue disorder... as I also have a lot of tendon-related issues - ribs that like to dislocate a family trait of being fairly flexible, though not as bad as some others... my rotator cuff injury is currently being blamed on tendons as is the ACL repair required after I was standing in my skies (not actually skiing)... when my ACL blew, etc. My mother's history as well as multiple aneurysms... etc. Again, not being taken seriously by any doctors so I'm pretty sure my request for screening for it got filed in the trash can.
     
  12. Sea

    Sea Senior Member

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    Science has shown that people with C677T have a greater need for folate. However, in spite of the proliferation of claims I have not seen substantial evidence that they cannot process folic acid. There are indeed some people who cannot process folic acid but I don't believe the evidence is there to say it is this mutation that does it.

    Initial investigations into the causes of neural tube defects like Spina Bifida flagged both a lack of folate in the mother's diet and a greater predisposition for those with the MTHFR C677T. Since the introduction of folic acid into all breads and cereals and the recommendation of prenatal supplements containing folic acid the rates of neural tube defects has dropped considerably in both those with and without the MTHFR defect.

    I have asked on various MTHFR support groups why this would be so if people with this defect couldn't process folic acid but mostly my question has been ignored or treated rudely. One told me that the rates of neural tube defects went up for those with C677T who supplemented folic acid, but the research they provided did not suport their claim. When I pointed that out they ignored me.
     
    Last edited: Jun 14, 2016
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  13. taniaaust1

    taniaaust1 Senior Member

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    My daughter has an issue with her spine very similar to spina bifida with neural tube defect and I have a double copy of the worst MTHFR mutation. I believe her issue is due to my mutation.

    I got told the form of folate acid I was taking during pregnancy, my body wouldnt have been able to use well (one of my MTHFR mutation specialists one time went into all the chemistry of it with me about what cleaves off etc etc.. I forgot now thou).

    I certainly have found a difference with taking the right form of folate acid over the normal form which helps me in no way at all. The first specialist i saw for my MTHFR mutation put me onto normal folate which I was on for a couple of years, it was only when I sought out a more knowledge one after reading some things online, then I was taken off of that form and finally helped.

    anyway, the normal form in my case does seem to be useless to me and didnt prevent complications with my daughter when pregnant.
     
  14. PeterPositive

    PeterPositive Senior Member

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    Regular blood test at the hospital.
     
  15. alex3619

    alex3619 Senior Member

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    Recent research indicates folic acid is poisonous for everyone at more than minisicule doses. The liver only processes it very slowly, and I think two slices of folic acid fortified bread have unmodified folic acid go into the bloodstream. Natural folate is different, though some can have a block that slows its utilization. Someone who has a MTHFR problem is more vulnerable ... but everyone is vulnerable. What we do not know for sure is how vulnerable people really are, how big the issue is ...there has been insufficient research. It will also vary with individuals and with various co-morbidities.
     
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  16. PennyIA

    PennyIA Senior Member

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    I keep wondering if this is what might be behind the 'gluten sensitivity' concerns that folks feel better avoiding gluten at this point - mostly because they feel better without the folic acid fortification? I've always meant to go try to find some folic acid-free gluten breads to see if I can tolerate them.
     
  17. alex3619

    alex3619 Senior Member

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    The timeline fits in my case.
     
  18. parabola

    parabola

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    I don't think we do that so much here in the UK, and gluten sensitivity seems to be quite common here too. Are even your pastas and things fortified in the US?

    I hope you manage to find a doctor who takes your seriously, the lymph nodes and the possible genetic aspect should definitely be looked into! I tend to withhold my 'CFS' label unless absolutely necessary when talking with new doctors as I suspect (from past experience) that it will then get used as an excuse to lump any new complaints under that umbrella. I'm sure you could drag yourself in with a broken leg but if the labels there you'd get CFS cited as a cause.

    I agree that certain groups appear to have vested interests and unquestioning followers. I was put off looking into MTHFR for so long after getting my test results, because I didn't like what I saw with heavy sales-oriented 'literature' that came with. I mean, do I need dozens of bottles of the same repackaged 'nucleotides'?! BUT then I kept seeing anecdotal reports that the protocol helped a lot, and read all of the material on here from @richvank and @Freddd and decided there must be at least something in it..
     
  19. PennyIA

    PennyIA Senior Member

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    Yes, pretty much all flour purchased in bulk is fortified... so it's in breads, pasta, etc. AND then other things ALSO have fortification added as well. But if you quote 'wheat' as your ingredient you don't have to identify that it is folic acid fortified. So, when people look at the foods that they are eliminating that's helping them - 'wheat' and some other grains are what they can see on the label.

    Gluten free foods have to document if they are fortified with folic acid or not... and the vast majority of them are NOT fortified.

    Some artisanal breads and pastas are not fortified - others are... so it's kind of hard to track down which ones would use wheat without the government mandated added folic acid... but that's one of my goals over the next year is to figure out if I can tolerate gluten, just not the fortification.
     
  20. Sea

    Sea Senior Member

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    I agree there is certainly something in it, I just haven't seen evidence that it is linked to MTHFR, which could explain why you seem to be gaining some benefit from folic acid. That is not to say though that it is good for you. At the same time you may be building up unmetabolised folic acid. As Alex says new research is showing it's really not very good for anyone. I do not have C677T but I have other mutations in the folate pathway and I benefit from supplementing methylfolate and avoiding folic acid.

    We avoid the fortification by making our own wholemeal wheat flour and using it to make bread. Wheat grain is not fortified.
     
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