The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Get rid of B12 build-up in liver

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Luca_Toni, Sep 23, 2015.

  1. Luca_Toni

    Luca_Toni

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    Hi,

    Four years ago I discovered that daily taking of 100-500mcg of B12(as cyanocobalamin or hydroxocobalamin) is very effective for me against brain fog. It seems that I'm very strong responder to B12 and that was life-changing experience. Now I know that I respond even to dose as small as 3 mcg(yes, three micrograms!). I wish I knew it 4 years ago.

    So basically during first 7-8 weeks there were no side effects but then pattern of my response changed and I didn't notice it timely. Under changed pattern I mean that during 'no side effects' period after taking dose I felt great for 24 hours and then returned to my normal state but over time although every dose still was effective but after 10-12 hours kind of crash happened and day by day crash severity increased. At some point I noticed that my stool became pale and very soon it became obvious that I generally feel really bad.

    I decided that there is problem with my liver. And that was the case. A doctor that performed ultrasonography said that liver looked like I just experienced major poisoning. I discontinued B12 and shortly after my condition mostly resolved. Repeated ultrasonography showed that my liver is fine.

    As I said my condition mostly resolved but some nasty side effects are present till today. For example I cant take zoloft anymore(before I could use it with no side effects and now can't tolerate at all). Also I cant tolerate doses of cyanocobalamin as small as ~50ng (yes, nanograms!) - after few days it feels like I poisoned again. Color of my stool improved to some extent but still quite pale. Sad thing is that lasting side effects virtually alienating me from using two most effective remedies against anxiety and brain fog - zoloft and B12.

    The only explanation that come to my mind(especially in light of bad reaction to very small amounts of B12) is that although I haven't taken B12 for more than 3 years but somehow I'm still full of it.

    Any ideas how to improve my condition will be highly appreciated.

    Sorry for broken English:)

    Thanks in advance,
    Anton.
     
    merylg likes this.
  2. ahmo

    ahmo Senior Member

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    I've helped liver w/ 2 things. Herb Chanca Piedra (Break stone) and coffee enemas. Info and my experiences of coffee enemas in my signature.
     
    minkeygirl likes this.
  3. Helen

    Helen Senior Member

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    Hi Anton,

    I learnt from a Swedish doctor and B12-expert that Professor Ruma Banerjee is one of the best in the world when it is about vit B12. Could your symptoms be due to an (inherited) enzyme deficiency and maybe she could help?

    In the linked article below she says :

    "Over the years, I have been contacted by parents and relatives of individuals affected by inborn errors of metabolism affecting enzymes that I study. I am eager to help with providing information and samples in an effort to accelerate the pace of finding cures. That this community even follows my work is always a surprise to me."

    http://www.asbmb.org/asbmbtoday/asbmbtoday_article.aspx?id=17029

    If you google, her e-mail address should be there somewhere.

    Best of luck!
     
    merylg and Gondwanaland like this.
  4. Gondwanaland

    Gondwanaland Senior Member

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    What about the cyanide from all the cyanocobalamin you took?

    Edit - of course deficiency in other Bs could cause impairment of proper metabolism of B12.
     
  5. Gondwanaland

    Gondwanaland Senior Member

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    Your body will try to make new red blood cells from the B12 and will mobilize copper and iron. Low iron can cause breathing dificulties.

    To build the new RBCs you will need all the other B vitamins in corresponding amounts. Vitamin A transports the iron. And then an intricacy in the need for vitamins and minerals ensues.
     
    PeterPositive and helen1 like this.
  6. PeterPositive

    PeterPositive Senior Member

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    I am not sure I've ever heard that B12 can cause liver toxicity by way of a build up. As far as I understand it the liver will store some B12 for future use but this is not very dependent on how much you take. In other words, the liver storage is limited and the rest does its biological function and then goes out, being a water soluble vitamin.

    Could be the cyanide of cyanocobalamin? Maybe. Although I am not sure there's any evidence that the cyanide in cyano-B12 can be toxic, unless dinosaur-like doses are used for extended periods of time.

    Did you just discontinue the B12 or did you also add products to support your liver function?

    cheers
     
  7. Luca_Toni

    Luca_Toni

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    Thanks! I'll think about this.

    Already have found her email. Hope she will be willing to review my case. Thanks!

    I took cyanocobalamin only initially. Very soon I switched to hydroxocobalamin. All the problems with liver happened while I was taking hydroxocobalamin.

    Well, time to time I try different supplements and some of them like B6, zinc, copper, iodine, potassium have nice effects on me but none of them either game changer as B12 was or have pronounced effect on current condition. I've already tested plenty of stuff and think it's highly unlikely that I'll accidentally find solution simply enumerating things. Only expert in the field or somebody who experienced something similar and found solution or DNA-sequencing can hint how to tweak my body and force it to work properly.

    Yes, I just discontinued B12 and condition mostly resolved. I didn't use any liver supporting products at the time.

    My impression is that most of those who try to utilize B12 struggle for proper absorption but for me absorption and efficacy never were a problem. So I think that somewhere in the absorption pipeline my body is really effective at the task. Hence the problem.
     
    merylg likes this.
  8. Helen

    Helen Senior Member

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    Please let us know if you´ll get a reply! I do hope you´ll solve your B12 problem in some way.
     
  9. Calathea

    Calathea Senior Member

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    If your liver function tests are coming up clear, I'm not sure why you're assuming you still have liver problems. We have ME, all sorts of things can make us worse, and sometimes those episodes result in a general deterioration of health that lingers long past the original exacerbating factor, just because it's very easy to knock our health back. For instance, one of the things which contributed to a big ME crash for me years ago was a urinary tract infection that landed me in hospital. It took a long time to improve from that crash in general, but my urinary tract has been absolutely fine since and has not been involved. It was a modest dose of B12, well within safety limits, it was years ago, and your liver tests are fine now. There's no reason to assume you have long-term B12 poisoning.

    There are an awful lot of myths about livers, especially "liver cleanses". Make sure you do your research anything recommended, googling it together with the word "scam" and so forth. To be honest, I would stay well away from any purported "liver cleanses". If you're getting gastrointestinal symptoms, focus on them as they are, and your ME in general.
     
    Last edited: Sep 24, 2015
    PhoenixDown likes this.
  10. Dreambirdie

    Dreambirdie work in progress

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    @Luca_Toni The toxicity symptoms you feel could be due to an improvement in methylation caused by the HB12. Many people who are unwell due to partial blocks in methylation will begin to dump heavy metals and other toxins out of their cells when methylation begins to improve. The best way to handle that is to find a dose of HB12 that is manageable for you to deal with, one that does not overload you with a toxic dump.

    Good luck with that.
     
  11. TheChosenOne

    TheChosenOne Senior Member

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    Aren't B vitamins water soluble?
     
  12. Gondwanaland

    Gondwanaland Senior Member

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    It could be iron build up in the liver if the person is deficient in one of the Bs. B1 is largely overlooked and important in RBC synthesis. My husband has been diagnosed with iron build up in the liver during an ultra sound. The doctor said that his lived had a characteristic color of iron build up. In fact, my husband serum levels of iron and ferritin were high. Also high serum B12 and lowish B9.
     
  13. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Did you take these one at a time or all together? Metabolic processes will work correctly only if they have all of their needed components.

    B12 should be taken with the other B vitamins. Folate (B9) is especially important. Some people cannot utilize the folic acid form.

    B2 is necessary for putting iron in blood cells. It also needs B1, B6, and manganese. (and B12.)

    They are, but the liver and kidneys filter out the excess. Large excesses can be bad for them.
     
  14. Luca_Toni

    Luca_Toni

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    Ok!

    Yes, my liver function tests are clear. As I said during initial B12 taking I developed pale stool. Long after discontinuation of B12 stool color improved but at the same time I began to experience pain in the area of gallbladder. It turned out that, according to MRT, my bile was thicker than normal. Right now there is no gallbladder pain so it seems that thickness of bile is normal again but if I take, say, 3 mcg of B12 then pain returns. I think that this indicates some lasting damage to liver.

    Right now if I take 50 nanograms(!!!) of cyanocobalamin for 3-4 days I begin to feel unwell. I understand that it sounds very unusual.

    By the way I do not tolerate iron supplements at all...

    Folic acid doesn't have any effect on me. I cant tolerate metafolin, manganese. B6 helps with thick bile to some extent. Haven't tried B1 and B2. Worth a try.
     
  15. Calathea

    Calathea Senior Member

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    Gah, the browser just ate my message. I'm concerned that you are convinced that you have liver damage when you have clear liver function tests, no reason to suspect liver damage (sporadic pain in the gallbladder area doesn't mean you have long-term liver damage! Have you been checked out for gallstones, which are very common?), and have taken a very safe medication at very low levels. A nanogram dose is insignificant. There isn't actually a dose at which B12 is considered to be dangerous. (Apologies for saying there was earlier, I just realised I'd skipped a line and was reading the limit for B6.) I'm on 5mg daily of methycobalamin, as are many of us here, and have been for years. My B12 levels are within normal limits. Doctors are very happy to test B12 levels. Have you checked whether you get B12 from other sources, such as foods it occurs in naturally, foods fortified with it (not always obvious), multivitamins?

    Don't assume that getting symptom A around the time that you take supplement B means that B is causing A. It's hard to tell this at the best of times, and particularly hard for those of us with such a variable condition, where we can have a crash from pacing around while talking on the phone. If you are convinced that B12 is "poisoning" you, then you are likely to get a nocebo effect.

    You sound very anxious about all of this. Would it be easier to drop vitamin supplementation and focus on other ways of making yourself feel better? Sometimes a method of approaching ME is useful, sometimes it's more trouble than it's worth, and it's totally individual in terms of what works for whom, and which methods will cause undue stress.
     
    Last edited: Sep 25, 2015
  16. Gondwanaland

    Gondwanaland Senior Member

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    You might be deficient in choline like my husband was. How many eggs a day do you eat?
     
  17. Aerose91

    Aerose91 Senior Member

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    I think this is where nutritional balancing can play a good role
     
  18. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    According to a former member here, you make 5 million red blood cells per second. Iron from broken down blood cells is one thing that colors you stool brown. Pale stool may (or may not) indicate that you are not getting enough iron into your red blood cells, but using zinc and lead instead. These cells do carry oxygen, but not as well as normal ones, so you do not feel as well. You can search on zinc protoporphryn for more information.

    If this is the case, you probably have plenty, even too much, iron in your liver. It takes B2 (and some other things) to get the iron out of the liver. It takes B12 (and some other things) to get the iron into the blood cells.

    If you think this might be your problem, start B1, B2, B7, and manganese low and slow. If you go too high too fast you can create oxidative stress. After a few days add B6, B9, and B12 low and slow. At some point you should probably add the rest of the Bs.


    You may want to read the threads here on hair mineral testing and the B2 protocol.
     
    Gondwanaland likes this.
  19. Gondwanaland

    Gondwanaland Senior Member

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    Do not overlook B5. Add B5 and B3 in small amounts since these are pretty easy to get from food. If you tolerate, eating eggs might be a good idea (vit A, D, K other than some Bs).
     
  20. Luca_Toni

    Luca_Toni

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    According to several ultrasounds there's no stones in my gallbladder although MRT detected 'sludge'. To my knowledge sludge is thick, dense bile. Regarding multivitamins and B12 from other sources - it puzzled me for a while why my favourite multivitamin caused gallbladder pain. At some point I realized that probably it's because of 3 mcg of B12 in it. I tested this hypotesis with plain B12 and it turned out to be the case. So it seems that right now I'm really sensitive to B12 and therefore theory that I get plenty of B12 from some other source and then 3 mcg on top of it cause problems isn't plausible in my opinion. And about reasons to suspect liver damage - after initial acute problem with liver resolved I continued to perform ultrasound from time to time. And for about a year my liver steadily increased in size. Overall increase was 20% but size still was within norm. I would say that it's clear sign of some problem.

    Yeap, I'm very anxious about all of this:) But I'm just trying to develop some understanding of my health problems and then using this understanding as basis try overcome these problems. If I give up my current understanding how it advances my situation? What do you mean under 'other ways of making yourself feel better'? Something like cognitive behavioral therapy?
     

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