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Very high B12! On methyl supps, so what's next to get it down??

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by grapes, Feb 24, 2017.

  1. grapes

    grapes Senior Member

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    Well, in late 2016, discovered that my B12 was 1600 (double the top of range) along with symptoms of B12 deficiency. That was from being on methyl B12.

    So I moved over to the Seeking Health Adensylcobalamin and Hydroxycobalamin. But alas, it's now "OVER 2000". And boy do I have fatigue now because of it. So as of two days ago, I moved to hydroxy only. I can't go without B12, or I start to have deficiency symptoms

    I'm sure this is all due to my now-active methylation mutations in MTRR, COMT and MTHFR 1298. My iron is now too high, too, at 166 for a female.

    So now I wonder--how in the world to get the B12 down. In addition to now moving over to hydroxy B12 as of two days ago, I've been on the follow supps for a few months---perhaps it takes even longer?

    • Methylfolate 400 mg
    • Betaine (restarted)
    • B-vitamins by Seeking Health (without folate and methyl b12)
    • Curcumin
    • Phosphotidylcholine
    • Nattokinaise
    • D3
    • Probiotics
    And I'm now off of meat as of today. I have also been on 5 mg Lithium for two weeks. Would it help to move to 10 mg?
     
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  2. Oberon

    Oberon Senior Member

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    Please don't take this the wrong way, but I am a tad confused...

    Why do you want to lower your b12 levels?

    If you want to lower your b12 levels, why do you keep taking B12?

    Why do you believe the fatigue is from your high b12 levels?

    Have you had your MMA, & Homocysteine checked?

    Is your Iron high or is your Ferritin high and what is the actual reference range provided by the lab? Most doctors only test ferritin but it is not necessarily an accurate indicator if you have active inflammation (many with ME/CFS do)
     
  3. keenly

    keenly Senior Member

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    High B12 is valuable. I would switch to hydroxy only for now. Fatigue is likely because of something else, maybe B2 deficiency, or heavy metal dump.
     
  4. Crux

    Crux Senior Member

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    Perhaps your symptoms of B12 deficiency are really from the elevated iron ?
    Are they neurological, with pain ?

    This happened to me, and the extra B12 helped because it blocked some of the excess iron absorption.
     
  5. grapes

    grapes Senior Member

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    You are correct -- I shouldn't say I want my B12 lower. I need to say I want it to break down for use better instead of building so high and not being broken down for use.

    And why do I keep taking B12? Because I was having symptoms of deficiency. i.e. my B12 was clearly not being broken down for use--was getting numb little fingers as well as numbness in my legs...and that totally went away in a few weeks with the combo of adenosyl and hydroxy B12. But the adenosyl must have kicked my B12 levels even higher! Over 2000. So I have now moved over to hydroxy only...as I've seen others do in this situation.

    Like anyone, I am making a conjecture that the excessively high B12 was causing the fatigue, based on what I've read. I am scheduled for an MMA and homocysteine next week.

    Iron is high only. 166 is at the top of the range provided, but women are usually optimal far lower than that, as I've been most of my life. The iron rise happened at the same time that B12 started going high.
     
  6. grapes

    grapes Senior Member

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    Crux, I've just been surmising that the high B12 caused my fatigue as of a week ago. But you may be right about the high iron---just did a search and see that fatigue is a symptom of that. Hard to know.

    I did stop the adensyl B12 and stayed only on hydroxy B12, and by the 3rd, day, did notice a slight improvement i.e. didn't have to nap, though still felt tired in the evening. Time will tell, I figure.

    I just want to find out from people how they got their iron and B12 to be broken down for use better, and how long it took. It does appear to be related to my methyl snps in MTHFR, COMT and MTRR, I'm thinking, which may now be active.
     
  7. grapes

    grapes Senior Member

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    All I know is this:

    1) I need to continue with the B-vitamins as recommended by Ben Lynch, hoping that they will eventually help the methylation problem
    2) I need to avoid meats and other higher iron foods for the time being
    3) I need to stick with hydroxy B12 for awhile to treat symptoms of B12 deficiency because the B12 is not breaking down for use
    4) I've been taking 5 mg lithium to help get B12 to the cells, and am wondering about trying 10 mg maximum...and see. Lots of good research showing it can help with the B12...plus testing shows I need a little lithium anyway.
     
  8. Crux

    Crux Senior Member

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    In my experience, it was gut microbes that caused my B12 deficiency. Once I decimated most of them, I still needed a lot of B12 to stop the neuropathy.

    Recently, I discovered that it was also the Iron overload that was causing the numbness and pain of my limbs and flank. When I eat high heme- iron meat, within about 6 hrs., my feet begin to 'buzz'.

    ( If meat is cooked for a prolonged period, the heme- iron becomes non- heme, which is less bioavailable.)

    I've been taking Copper, which has improved my iron homeostasis. Copper deficiency can cause neuropathy.

    Drinking tea can chelate iron. Quercitin can chelate iron and increase hepcidin, a hormone that reduces excess iron.

    Now, I don't take as much B12, just some to block iron absorption. Cobalt, Zinc, Calcium,Lead and Cadmium compete with iron for absorption in the intestines. (Of course, we don't want lead and cadmium.)
     
  9. grapes

    grapes Senior Member

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    Thanks. Just blew me away that my iron went up from 116 to 167 in a short time. So as I'm trying to improve methylation, I read that chicken breast was my best bet if I need meat, while avoiding dark chicken and red meats.

    By the way, this research said this at the end: "....we did not observe an effect of cooking methods or doneness level on the heme-iron content of meat." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3583546/ But like you stated, there so seem to be other articles that imply the non-heme is higher in high heat/cooked meat.

    The BAD thing about my iron overload is that my TIBC has always been fairly low, implying that I don't make enough transferrin to bind iron. That bothers me. So after what you said about tea, I saw that green tea is a good one to block the absorption of iron, and I like green tea! :) Will start drinking it today!

    As far the mention of zinc, my level is great. Had to get it up to counter my tendency to have high copper.
     
  10. grapes

    grapes Senior Member

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    Something occurred to me. As mentioned in my first post, the most likely cause of my high iron and high B12 is a methylation problem due to the gene mutations I mentioned being active. That means I am not breaking down either for use. For example, my high B12 (from a methylation issue) also went along with low B12 symptoms.

    So what I'm leading up to is do I really want to use green tea to "block the absorption" of iron? I may already not be getting enough i.e not breaking it down for use. This is hard to figure out.
     
  11. Crux

    Crux Senior Member

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    Thanks for the link - I'll go over it tomorrow.
    Here's an abstract from an older study.
    https://www.ncbi.nlm.nih.gov/pubmed/3761027

    In my experience so far, when I braise a roast for ~ 3 hrs., I don't react. If I just cook meat to well done, neuropathy.
    I'm eating less meat, but I don't want to cut it out, unless it keeps causing this issue.

    There are many snps that can cause elevated iron. We've been misled to think that the classic hemochromatosis ones are the only ones. I had low TIBC, low UIBC, high TS, and normal serum iron.

    I've been trying to have more green tea, some decaffeinated. 6 cups blew me down with pain, insomnia, fatigue. It's strong stuff. Both the Tannins and EGCG can block absorption as well as chelate.

    I started some Quercitin today. Don't know yet. Hesitant to push the amount.

    Serum iron shows recent consumption, but low TIBC would indicate overload, especially if transferrin saturation is high. Did you get that tested ?
     
  12. grapes

    grapes Senior Member

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    Yes, low TIBC would be indicative of iron overload, but I've had a low TIBC with low iron here or there over the years! It baffles me. And when TIBC is low like mine is, it can make the % sat look higher than it really is, since % sat is iron divided by the TIBC. The inference that I don't have a lot of transferrin does concern me with this high serum iron.

    Your mention of other snps causing elevated iron pushed me to do a search of my genetics. I found nothing in any of the rs numbers other than being homozy for fR2 rs7385804, i.e. related to Type 3 hemochromatosis, is rare, and which is "a type of iron overload disorder associated with deficiencies in transferrin receptor 2". I wonder if that fits my low TIBC, which implies low transferrin. But....I still lean to believe that since my iron went up at the same time my B12 went up, it's more a methylation problem.




     
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  13. grapes

    grapes Senior Member

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    Keenly, I forgot to reply to your post. Glad you agree with me in switching to hydroxy. I'm on my 3rd day, I believe. As far as the fatigue, I've been on B2 for months. I did finish a copper detox last October, but this rising B12 only seemed to happen afterwards...and went from 1600 to "over 2000".

    BUT....I just relooked at my genetics and was reminded that I have SIX homozygous FUT2 mutations...of which two are shown as significant: rs492602 GG and FUT2 rs602662 AA. THAT could explain this high B12...

    Livewello states this about the FUT2 variation: Among generally well-nourished women, a study found that common variation in the FUT2 secretor gene was associated with plasma vitamin B12 at high levels of statistical confidence (sound like ME). Women homozygous for the rs492602[G] allele (ME) had higher B(12) levels. In both an initial GWAS and the replication data set, the association between rs492602 and plasma vitamin B12 was stronger than the association for rs602662 and plasma vitamin B12.

    (Then digging deeper, I found this about my homozygous FUT2 rs601338--it means I am more likely to have lower microbiome species diversity, especially Bifidobacteria...which I've been on for several weeks now and looks like I need to be on for the rest of my life.)

    BUT THE QUESTION REMAINS: if my FUT2 mutations are now active, what the hell do I do about my super high B12? And how do I know that this is the cause of the high B12 when I have methyl mutations as well? It's crazy.

    And why do you say high B12 is valuable?? I see side effects mentioned that aren't jolly.

     
  14. Mary

    Mary Senior Member

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    Your fatigue might very well be due to potassium deficiency induced by B12 - see http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291410 and http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422

    When I started taking methylfolate, my potassium dropped in about 2 days (after an initial burst of energy). My chief symptom of low potassium was severe fatigue. It can also cause cardiac problems, muscle spasms or cramps and other symptoms. Anyone who is starting B12 of folate needs to learn about this. My low potassium symptoms resolved after I titrated up to 1000 mg of potassium gluconate in divided doses over a couple of days. I've learned that I need to keep taking this and also drink low-sodium V8 which is high in potassium. Do read the above links. I don't think B12 itself, whether methylobalamin or hydroxocobalamin is causing your fatigue. My B12 levels are always very high, but I need to take a lot of B12 to stave off symptoms of B12 deficiency.
     
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  15. grapes

    grapes Senior Member

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    Good grief, I never would have guessed that my potassium could now be tanked! Thank u for that. I'll get it tested.

    And it's nice to know that I am NOT alone in having high B12 with low B12 symptoms. Why do you have that? I do have significant FUT2 mutations which can explain the high B12...but the low B12 symptoms seem to fit that my methylation mutations can be pushing the B12 up...
     
  16. Mary

    Mary Senior Member

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    @grapes - you should know that your potassium levels could be in the normal range, and you still may have a problem with it. My level was always in the normal range, although on the lower side of normal, maybe 4.3 or so, although sometimes got down to 3. something. But it never raised a red flag for any doctor because it was in the "normal" range.

    Read what Richvank says in the link above - he explains why people with ME/CFS can have problems with getting enough potassium into the cells, separate and apart from the hypokalemia caused by methylation. In a way I think it's similar to the B12 problem - having lots of it in the blood but not being able to utilize it.

    I'm not suggesting not to get the blood work done but that it may not give you all the answers. The daily RDA for potassium is 4500 mg. So one easy thing you can try is to get some high potassium foods (I keep suggesting low-sodium V8 because it is very high in potassium, without all the sugar many high potassium foods like bananas and sweet potatoes have. I would try a couple of glasses of V8 during a day, probably 3 - and see if you feel any better. It might take a couple of days to get results if it is going to help. And if you do notice a difference, that will be very useful information and you can decide what to do from there. I have been taking 800 - 1000 mg potassium gluconate, in divided doses, for 7 years now, along with the V8 and it keeps the symptoms of low potassium at bay. If you do try a potassium supplement, it's important to start low and slow - maybe 200 mg 3 x a day, and gradually increase if needed. There are a ton of posts on the board about this issue. Several people have to take more than I do, we're all different.

    I don't know why so many of us have difficulty utilizing B12 - with high blood levels - but not being able to use it, but it seems to be a part of ME/CFS for very many of us, so I have stopped wondering about it and just take what I need. I do make sure I'm taking a good regimen of all important nutrients.
     
  17. grapes

    grapes Senior Member

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    Oh, I see what you are saying after reading what Rich said--that serum may look right, but intracellularly, it may not be good. I started on potassium tonite, and will go buy low-sodium V8 tomorrow. I've HAD low cellular potassium before a few months ago...can't remember why at the moment. But raising potassium DID help. So it makes sense that it may be what is going on now.

    Bottom line for me, I suddenly have BOTH high B12 and high iron. So points to a methylation problem overall, even if I do have FUT2 mutations which could be causing the high B12, too. But the combo makes me lean towards methyl. Hard to figure out what is causing what.

    REALLY appreciate having a possible answer to the fatigue that I can experiment with and possibly do something about for relief.....
     
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  18. keenly

    keenly Senior Member

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    Hydrogen Sulfide depletes potassium, and I think we all have a problem with that.
     
  19. Valentijn

    Valentijn Senior Member

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    Which mutations?
     
  20. Mary

    Mary Senior Member

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    ++
    Can you explain? I'm not familiar with hydrogen sulfide - is it in food or? and what sort of problems does it cause?
     

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