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advice on breaking accidental methyl trap

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by SwanRonson, Oct 26, 2014.

  1. SwanRonson

    SwanRonson Senior Member

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    My current symptoms are basically those of folate/b12 anemia: constant brain fog/dizziness, sensitivity to light, weakness, fatigue, heavy arms and legs.

    For the sake of brevity, i'll just post dates and what happened:

    9/1 - Went to the E/R with stomach pain. Endoscopy confirmed gastritis (break in stomach lining, but not ulcer). We think it was a vitamin c powder mix supplement I was taking that caused the gastritis. Prescribed omeprazole (Prilosec) for 6 weeks.

    9/5 - Had blood work done at my GP. Folate test came back as low (5.8).

    9/10 - Follow-up with G.I. doctor. He noticed my low folate and said to take a 1mg folate supplement for "a few months" to bring the level back up. I went and got a bottle of "Folate" 400mcg (turned out to be Solgar Metafolin) and started taking 2 each morning (800mcg) with breakfast to get close to the 1mg the G.I. doc had recommended. I've been taking the 800mcg almost every day since along with my regular multivitamin which contains 200mcg of folic acid.

    9/18 - I donated 1 unit of blood at a blood drive. I started feeling horrible that night with the symptoms listed at the top of this post.

    9/24 - After going down hill for a few days I ended up in the E.R. with leg cramps, fatigue and dizziness. I thought it might have been a leg blood clot. They checked me out ,gave me a bag of saline and sent me home. I felt much, much better the next day so I chalked it all up to just a bad reaction to donating.

    9/28 - Went for a follow-up visit with my GP. He took a bunch of blood tests and I started feeling horrible again that night. At that point I thought it was a blood volume issue, since each time I felt bad coincided with taking blood.

    At this point I've been in and out of doctors trying to figure out what the heck is wrong with me for the past 6 weeks until 2 days ago when I happened to look up "methylfolate side effects" and discovered all of this information about methyl trapping. So now it seems like the blood donation was a coincidence and my symptoms have been those of paradoxical folate deficiency anemia the whole time - induced by the methylfolate that I unwittingly was taking.

    My last dose of methylfolate was 2 days ago (400mcg in the morning with breakfast) and I've upped my potassium by eating plantains and drinking a lot of coconut water.

    Before all of this started I was fine. The gastritis is now gone. I'm no longer on any medication, but the constant brain fog/dizziness is making it very hard to function. I don't believe I've done any permanent neuro damage since I have periods of clarity, usually after eating a meal of only meat. But the symptoms seem to return the next morning.

    Does anyone have advice on the best way to proceed from here?

    Thank you so much!
     
  2. SwanRonson

    SwanRonson Senior Member

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    To add one more thing: I have a constant craving for beef at almost every meal. I'm assuming that has something to do with the high b12 content in red meat. I do always feel a bit better within 2-3 hours of eating a large helping of ground beef.

    Also, here is my 23andme profile analysis from Genetic Genie if it helps:

    [​IMG]
     
    Last edited: Oct 26, 2014
  3. Martial

    Martial Senior Member

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    Stop eating all folic acid fortified foods, and folic acid fortified supplements. Just use 5000mcg methyl b12, 5000mcg adeno b12 lozenges, and 1600mcg-5000mcg of methyl folate. Might be worth taking some b2 as well since folate can block absorption receptors for it. That would take care of any deficiency you have of b12 and prevent nervous system issues to occur if you keep taking it every day. Ideally you might even want bi weekly b12 shots in methyl or hydroxy form as well. This is all in treating a b12 deficiency not working on snp methylation stuff which would cause differing opinions.

    You aren't going to pull out of a b12 deficiency without taking some kind of b12 supplement. Methyl is best in my opinion but some prefer hydroxy, just do not take cyano b12. Also since you are mentioning a deficiency happening now you want to build levels as fast as possible. This would be why shots are very important, nothing will fill your levels faster then injections. At least bi weekly and combined with lozenges for the days you do not get shots. Adeno b12 is another form that helps in rebuilding nerves and supporting the other form of b12.
     
  4. Sidereal

    Sidereal Senior Member

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    It sounds like methyl trap from taking methylfolate without adequate B12. When the GP said folate was low, did he measure B12? What is your complete blood count like? Do you have anemia? Elevated MCV? Have you been tested for celiac disease?

    The meds prescribed for the gastritis (omeprazole, which is a proton pump inhibitor) would have further inhibited the absorption of B12. Your periods of acute decompensation coincide with blood loss which makes sense. Your body needs to rapidly form new blood cells to replace the lost volume and for that it needs adequate B12 and folate, as well as other things like potassium. If you're low, this will cause a crash. Based on your COMT +/+ situation, I would think hydroxycobalamin would be easier to start with. Methyl B12 may make you feel agitated or anxious. Then again, maybe not, if you were able to take 800 mcg of Metafolin for months.

    Make sure you administer sublingually. Don't swallow B12 tablets, absorption is much worse that way.

    Regarding beef craving, in the old days before B12 was discovered, they used large amounts of raw liver to treat pernicious anemia patients.
     
  5. SwanRonson

    SwanRonson Senior Member

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    Thank you so much for the replies!

    Did he measure B12? Yes, it was 466 on 9/5 and 557 on 9/29.

    What is your complete blood count like? Everything looked very good (high end of normal). That's why I went ahead with the blood donation.

    Do you have anemia? Not sure yet. I'm waiting on the results from the pathologist. Should know today hopefully.

    Elevated MCV? No, mcv was within normal range (85.4).

    Have you been tested for celiac disease? The endoscopy biopsy came back negative for celiac.

    I also got my homocysteine checked on 9/15. It was 9.4.
     
    Last edited: Oct 27, 2014
  6. SwanRonson

    SwanRonson Senior Member

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    TY!

    I have plenty of sublingual methyl b12 (Country Life 5000mcg) at home. Would that be adequate to start with on it's own? It's very hard to find hydroxocobalamin locally. I'll have to order it and would rather not wait to start treating. I still have the solgar metafolin tablets as well but I'm scared to take them since that's what caused this whole thing. Is it necessary to take it together with the b12 like that? Is it safe? Also, I'm not sure where, or what brand of adeno b12 to get. Can you reommend?

    I don't mind asking my GP for b12 shots, but is there a certain formulation I need to ask for? I read that Hydroxy isn't the standard shot in the U.S.

    SInce the serum b12 test is so unreliable, how do you know when it's ok to stop taking the supplemental b12? Is it just based on how you feel, or is there a more independent measure?
     
    Last edited: Oct 27, 2014
  7. Sidereal

    Sidereal Senior Member

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    Personally, I would try some sublingual methyl B12 to see what happens. You may want to back off the Metafolin for the minute to make sure you're not worsening methyl trapping IF that's indeed what's happening. Your blood tests make it less likely that you have a B12 deficiency, though it's not impossible. Some people have found themselves at death's door from various misdiagnosed neurological disorders including ME with normal lab results until they got on the B12 shots and were cured. It has been argued by some that 500 should be the lower range of normal, not 200. In addition to homocysteine, urinary methylmalonic acid (MMA) can be a useful test.

    If you get injections, avoid cyanocobalamin.
     
  8. Sidereal

    Sidereal Senior Member

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  9. SwanRonson

    SwanRonson Senior Member

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    Would the Country Life 5000mcg MethylB12 be good as a test, or should I do a lower dosage? Mb12 on it's own shouldn't worsen/cause trapping right?

    One more bit of info: I actually feel quite a bit better today for the first time in 6 weeks. The fog has cleared a bit. I wonder if it has anything to do with upping my potassium intake over the last 24 hours. Before yesterday I have no idea how much potassium I was eating per day. Probably not much at all. But since yesterday morning I've had about 3000 mg from food and coconut water combined. Perhaps low potassium has been a co-factor in all of this. It's so hard to tell since by the time your serum potassium shows low, you're in really bad shape.
     
  10. Sidereal

    Sidereal Senior Member

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    Yes, low potassium is a VERY common problem when taking these supplements. Some of us here have to take potassium supplements but if you're managing well with coconut water you may want to keep at it for a few days and see if things continue to improve. Methyl B12 will only increase the need for potassium so you need to be careful there. If I were in your situation I'd take nothing for a few days to try and get back to normal while keeping up the potassium intake.

    Before supplementing folate, what led to you getting those blood tests in the first place? Were you sick to begin with or did all this come on from supplementation?
     
  11. Martial

    Martial Senior Member

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    That version of b12 is perfect, take it on an empty stomach and take the methyl folate 20 minutes later. Your test results didn't show b12 in ranges severely low so that is good. Get Methyl b12 shots, or Hydroxy up to you. Again personal opinion I do not touch hydroxy b12 and find it just a degraded version of methyl b12. There is some other theories though that hydroxy works better for certain SNPs and helps to lower nitric oxide levels. This could be potentially helpful to some, and harmful to others. I just personally don't really follow into the theory, it is also proven that adeno b12 is a potent anti radical scavenger so I feel I don't need it for myself.

    There is no upper limit to toxicity for the supplement so you can take it indefinitely. It can be a very up and down process and takes a long time to really get everything firing on all cylinders. Though initial start up healing can be huge its important to maintain it for an extended period of time. Here is an adeno b12 supplement you can use, be sure to break the pills into halfs/quarters if you don't want to take the full dose.

    http://www.iherb.com/Anabol-Naturals-Dibencoplex-10-000-30-Sublingual-Tablets/9849
     
  12. SwanRonson

    SwanRonson Senior Member

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    It all came from the gastritis episode back on labor day. I've battled chronic constipation since my teen years and had been treating myself with high-dose vitamin C (Nutribiotic, HypoAller-C powder) each day as an osmotic laxative. It was working pretty well for about 2 months and then the gastritis hit. I had been on an LCHF diet for a couple of years and in good health until that point.

    I have been a supplement nut in years past, but not so much anymore. I induced hyperthyroidism in myself about a year ago by taking too much supplemental iodine. That episode taught me a lesson about being careful with supplements. That's why I'm kicking myself for this whole thing. I should have done more research before blindly following what the G.I. doc said about taking 1mg of "folate".

    As an aside, the recent gastritis is why I'm trying to get potassium from food/drink instead of supplements. I know potassium pills are hard on the stomach and I didn't want to aggravate that.

    Btw, thank you so much for helping. This is all very new information for me.
     
    Last edited: Oct 27, 2014
  13. SwanRonson

    SwanRonson Senior Member

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    Will taking the methylb12/mehtylfolate/adeno combo kick mehtylation back up into high gear? Or is the methylb12 just inert if taken by itself?

    Since I'm feeling a little better now (not normal, but better), I'm just wondering which direction to go. Sit tight and see if everything feels better with increased potassium and staying off the methylfolate, or try to actively correct it with a more proper mix of supplements.

    I guess I could give it a couple of more days and if there is no more improvement just start the methylb12/mehtylfolate/adeno combo. That would give time for the ordered supplements to come in anyway and to front-load plenty of potassium into my system as a prep.
     
  14. Sidereal

    Sidereal Senior Member

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    LCHF diets are electrolyte wasting so your potassium and magnesium situation may have been suboptimal to begin with.

    It sounds to me like all this was precipitated by some overzealous supplementation so chances are it will all blow over eventually and you'll be back to normal. :) As you've already found out, it is generally not a good idea to follow doctor's orders without doing your own research first. Even something as innocuous as an OTC folate supplement can land you in a lot of trouble with interactions and induced deficiencies of other things and all kinds of unintended consequences the doctor doesn't understand.

    I think your first priority here should be to stop this tailspin and avoid any more crashes and ER visits which will be easier to achieve in my opinion if you get your fluids and electrolytes on deck and not take more methylating supplements which will just further perturb the balance.

    Indeed, potassium is very hard on the GI which is why I am reluctant to recommend supplements given your gastritis. I personally dilute a bit of Lo Salt (which is a sodium and potassium chloride mix you can buy in the supermarket cheaply) in a large glass of water and drink it with food. Potassium tablets cause severe gut pain for me.

    There are much better laxatives than vitamin C. Magnesium is a good one. Have you tried psyllium husk as a bulking agent? It has worked quite well for me in that regard.

    If chronic constipation is an issue, you may want to look at doing something about the gut. We have a subforum here on PR which contains quite a bit of useful information about the gut.
     
    Gondwanaland likes this.
  15. SwanRonson

    SwanRonson Senior Member

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    Yes, I've tried magnesium citrate in the past with success, but it's effectiveness kind of comes and goes. I do think that it may be a gut microbe issue and I was taking probiotics along with the vitamin C powder. I have planned on switching to a soil based probiotic (Pre-assist). I bought it right before the gastritis and just haven't taken it yet since I didn't want to complicate things with taking more pills.

    I've tried psyllium before and it clogs me up big time. I'm one of those slow motility constipation cases where fiber makes things worse. The only thing that helps a lot is miralax, but I wanted a more natural solution than taking poly-ethylene glycol.
     
  16. Sidereal

    Sidereal Senior Member

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    Magnesium oxide is more laxative than citrate.

    Fibre is a very broad term. Different kinds of fibres do different things. It used to make me worse too which is why I tended to ignore all discussions of this until this thread came along & changed my mind about the importance of dealing with gut dysbiosis.
     
  17. SwanRonson

    SwanRonson Senior Member

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    Thank you for these recommendations and all of the other help guys. I've ordered LoSalt and the Dibencoplex from iHerb. My plan is to keep slamming the potassium until these supplements come in the mail. If I don't see any improvement by then I'll start with the mb12/mfolate/adenob12 combo along with the losalt and coconut water for potassium and see where that gets me.

    I'll post back on the progress for the benefit of others to know.
     
  18. sregan

    sregan Senior Member

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    My Daughter also has ++ on Both COMT. Because of that you might need to be conscious of which type of B12 you take. COMT ++ is supposed to be more sensitive to methyl groups because they supposedly aren't processed at the normal rate so they accumulate. Also your processing of dopamine may be slow also.

    Look for symptoms of overmethylation and keep an eye out. You might do better on HCBL instead of MCBL.

    Your MAO ++ can indicate that you also don't process serotonin at lower than a normal rate. So that may accumulate. Something you should be aware of if you are ever to be prescribed an SSRI or serotonin boosting drug or likewise supplemens.

    Your two MTRR +/- can indicate that you don't recycle B12 like you should and may need more than those without this mutation.
    Also your CBS++ and +/- indicate you might have a sulfate pathway issue. You may react poorly to sulfur type foods (Onions, garlic, broccolli, cauliflower, etc). Something you might research while you are here on this site.
     
  19. SwanRonson

    SwanRonson Senior Member

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    Wow, thank you for that info. I've had a suspicion for a while that seratonin may be a factor in my chronic constipation, but I've been slow to go down the 5htp path because of how i messed myself up before with iodine. If I can get past this current issue I'll probably start out with a very low dose (like 10mg/day) and slowly work up with stasis periods along the way to make sure nothing bad happens.

    A doctor prescribed me amatryptilene (Tricyclic) once for anxiety. I took it one time and felt like a zombie for about 2 days afterwards. That put me off to anti-depressents in general. I'm a slow metabolizer for CYP2C9 so, I suspect that has something to do my very negative response to the amatryptilene since it uses the CYPC2C9 pathway for uptake.

    I've had sleep problems also for years. Nothing like the horrible insomnia I've had recently with this methylation issue, but just always waking up a lot and hard to fall asleep/fall back asleep. Taken together, the constipation/insomnia pair seems to be a seratonin issue.

    REPORT:

    I continue to feel better by the hour. My head still feels a little "spinny", but I can concentrate and have a sense of well-being for the first time in about a month. Overall much improved even since this morning. So far today I've had no supplements at all and eaten the following:

    Breakfast: a large ripe plantain smashed up in half and half + 4 slices of bacon, 8 oz. coconut water

    Lunch: half a pound of beef, 8 oz. coconut water

    I calculate so far that I've had about 2000mg of potassium so far today and roughly 3000mg yesterday.
     
  20. SwanRonson

    SwanRonson Senior Member

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    Got my latest blood test back just now:

    _____________
    B12: 582
    Free T3: 3.2
    TSH: 1.18
    SED RATE: 4.00 mm/hr
    WBC: 5.5
    RBC: 4.77 (4.6-6.2)
    HGB: 14.5 (13.0-18.0)
    HCT: 43.6% (40-54)
    MCV: 91.3 (80-94)
    MCH: 30.4 (26-34)
    MCHC: 33.3 (32-36)
    RDW: 14 (11.5-14.5)
    PLT: 244
    MPV: 8.1 (7.4-10.4)

    Sodium: 141
    Potassium: 4.8
    Glucose: 83
    Calcium: 9.6
    Alk. Phosphotase: 47
    AST: 22
    GFR Caucasian: 115 (60-137) ** I have no idea what this is.

    Pathologist review of peripheral smear: "Unremarkable. No morphological abnormalities seen."
    _____________

    So, it appears that I don't have anemia, though some of the numbers are toward the low side, like RBC/HGB/HCT, and MCV is toward the high side.
     

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