Help needed for vitamin b12 results!!! urgent

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Hi,

My 33 year old husband has been a mess for past 3 months. He's having severe balance problem, extreme fatigue and bouts of depressions. ENT and Neuro have cleared him. He just got his B12 tested and the results are 207 ng/dl (reference ragne is 196.53-863.39). Now I have heard that levels at 200 are considered deficient. However, I am confused by the unit ng/dl. Couldn't find anywhere. Before we start any treatment, can any one please help me with the units? It is at the lower end of normal but I just need some help please! Its top urgent!

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  • Posted

    Just a thought for Caitlin re her chest pain. I imagine with a positive family history and severe pain this would have been thoroughly investigated. I presume then that little of significance was found. Since it is only slowly responding to B12 it must be ongoing.

    You might look at arterial spasm, aka Prinzmetal's or variant angina.

    I was messed around for years on this with the claim that since it was rare I could not have it. Both points being untrue. Initially it responded well to quite high doses of a calcium antagonist unless I missed a dose. Later I found that Magnesium as alginate in regular doses eliminated it totally instead of frequent pain emulating a heart attack lasting 20 minutes. The serum levels can be normal but I believe there are about 8 genetic problems with magnesium.

    Sorry if this is wrong or inappropriate for you it just rang alarm bells for me.

    • Posted

      thank u Chris. no worries re alarm bells - i have them every day lol? i shall google that info. and see what comes up. so sorry to hear re ur chest pain (MI like) episodes - most frightening? plsd. to hear it's been stabilised & that horrible experience is now behind u. guess u had to ''push'' every step of medical way???

      no, i haven't been 'thoroughly' investigated for chest pain & accompanying ''collapeses'' - a long story???? finally got an appoinment letter to-day for Cardiologist after nearly 3 yrs. anyway, i'd imagine from ur experience u know how it works or rather doesn't work lol.....well some of the time anyhow??

      do u mind me asking what dose of Mag. ur on & what route? a mitochrondrial blood profile found me v. deficient but am unable to tolerate the oral Mag. & Doc won't do injections???

      thanks Caitlin

    • Posted

      hell's bells chris (as opposed to the alarm ones lol) i think my chest pain could well be 'Prinzmetals' - it has many of the main characteristics - worse on rest, cyclical pattern throughout the day/night, raynaud's symptoms etc. etc. i've read a number of the posts on the Prinzmetals patient.info forum. many of the descriptions fit the main picture of what i'm experiencing as do their experiences with the Medics????? amazing. thank u, thank u , thank u.

      Caitlin.

  • Posted

    Well it was a bad story running over some 30 years. Complicated by also having some ordinary angina. It wasn't really diagnosed as significant for 12 years when I was found to be beyond a bypass and written off. However the GP insisted on a second opinion and I had surgery with mixed results.

    Initially I took magnesium chelate say 100 mg but later less regularly as required. The only time I had trouble was when I was in hospital and had none, and was overdosed on fluids then diuretics. Later I had some rythmn problems fatigue and depression which cleared on magnesium malate (not alginate as previously stated)  1-2 at 450 mg daily. Since I also had developed severe osteo I have stuck with that with no problems. It is oral.

    I don't think this is widely known (in fact it is widely overlooked) and one doctor assured me that they used magnesium sulphate (in small doses) which is a laxative. I think to get better forms one has to look at buying them privately.

    Your dosage may vary and one has to experiment if indeed it is or not appropriate for you. You will have a better more complete picture once the cardio has run some tests so I am far from short circuiting that. However if you are known to be low my tip may be useful to you.

    • Posted

      wow chris, u've been through the medical mill. thank heavens u've got a good GP who insisted on a 2nd opinion. the whole GP thingy is a bit of lottery. it seems that a ''culture'' builds up in each practice & if it's a good one great, but if not it can be hell. i hadn't realised that the different forms of Mag. can act in such a variety of ways. i'm on Mag chloride & can only take small amounts as it acts as a laxative for me. i will have to experiment. thank u again for the info. on Pritzels (lol). i'll be better infromed when i go to the Cardio. hopefully he'll be INFROMED. they don't like being informed by patients or even infromed patients..

      hope ur managing the osteo & that the pain is adequately kept in check. Caitlin

  • Posted

    Some people - at least 10% (some say 40%) don't respond to cyanocobalamin either they can't absorb it or they can't change it to a usable form. That is as I recall associated with the MTHFR gene defect which also means they can't transform folic acid to the MTH form.

    I would expect if he was getting what he needed there would be an immediate response which fades until all the cofactors line up.

    The liquid contains 3 types supposedly but the bulk may be the cheapest ie cyano. It also has folic acid.

    The fatigue should start to clear quite quickly, the balance may take months. It can be a long process to find the right mix for him if he has one or more as yet unknown defects or deficits.

    I think one of the advantages of this deficiency is that a positive step tends to show up very quickly, but you need to have the basics in line.

    Search for Freddd "The Stages of Methylation and Healing" or basic minimum protocol. Unfortunately links are not allowed.

    While various pieces of research have been done they are incomplete and have not percolated through to most doctors. So you tried the conventional.

    Now you are on your own with however pathlighters.

    After a while you learn to trust your own body's responses, not ignoring drs but not making them infallible and all knowing either.

    Its a pain doing it this way but much easier once you accept it.

    I would encourage your husband to take responsibility himself. After all there may be subtle signs etc he does not mention.

    Overdoing it doesn't help lol, but guess he has to learn that himself.

    • Posted

      Hey Chris

      Thanks a bunch for ur help. I did look up but I guess its a bit complicated for me to understand? What elae should he be given with methylcobalamin? Folic acid? Magnesium? Im kind of confused. And is it ok if he keeps taking the 500 mcg IM rvery alternate day for about a month? ( it is easier to get here)

  • Posted

    To some extent it depends how he became deficient ie straight vegetarianism could be simpler than malabsorption.

    Secondly it depends on what other pathways eg in methylisation are not working well.

    Because there can be some catching up to do of reactions that have not been happening, there can be greater demand for the cofactors.

    These basics need to be attended to first. Usually mentioned are zinc, magnesium, a strong general B compound, and I include lecithin as a source of choline the prime methyl donor. Selenium can be helpful particularly in soil deficient areas as it helps preserve glutathione a major anti-inflammatory. Active vitamin K and D can also be helpful as the former is commonly also not absorbed.

    Then if you add say 1-2 mg daily of say sublinqual Methylcobalamin and the same of Adenosyl Cobalamin (Dibencozide) of decent manufacturers ( I use Country Life and Solgar but there are others recommended) and quatrefolate or similar 400 mcg 2 pd divided dose and L-carnitine fumarate 855 mcg. Those are the base four. It pays to start slowly adding one thing at a time because you are setting in motion a whole series of changes and a rebalancing. That is one thing effects another so it is not a simple one vitamin is missing add it and everything is fixed. At least for many people. The reason being that there can be genetically based enzyme pathways one or more of which don't work well. Those are unknown to you although one can get genetic testing. Also in the working through you can get some bad patches when some toxins eg heavy metals start being expelled. Some also get a temporary drop in potassium usually showing in sore muscles but quickly eased by a small dose.

    The reason for using the two B12 forms is that these are the active forms which don't require conversion.

    The injections he is having are quite a high dose. The difficulty is that if he can't utilise that form they will do no good.

    On the other hand say he was able to form MCHB from the Cyncb but not the adenosyl cb then he still comes to a halt because of the lack of Adcb. Or he requires the methylfolate not folic acid. The only real way of testing is to try it out adding one thing at a time methodically. A pain sure and not likely to be done by a physician but the plus is that if something is needed a gain tends to show up quickly like in hours, even if more full results take longer.

    It also takes some time. One Dr in this field refers to it as a marathon not a sprint.

    I wonder if your husband is not in a stressful occupation and perhaps a type A goer or achiever which can put a cumulative overload on him until the body protests at the lack of balance.

    As you know it could be this or that, and at this stage is unknown. At this stage in the absence of anything else, you are putting out a hypothesis and trying that, to a degree by trial and error but also with the experience of others.

    You might also consider accupuncture as part of rebalancing.

    To encourage your husband AdB12 is also associated with greater sensitivity and sexual responsiveness.

    I understand that in Indian culture with a lot of vegetarians there are some practices developed of dealing with B12 and I imagine it is the same in Pakistan. I don't want to complicate the issue but sometimes within a culture one food has some harmful effects eg soy sauce but it is overcome by another eg green tea.

    I don't generally like taking buckets of vitamins and prefer a really healthy varied diet however sometimes some specific things are required.

    As an illustration a craving for sweet things can show a need for B6 which fixes it.

    Obviously most people don't need anything complex, however some do.

  • Posted

    Hmm Bingo – maybe.

    I had a look at ataxia since you said the balance thing seemed associated with gait. I wonder if this is the sailor’s walk ie a wide gait with a sense of imbalance not dizziness.

    I have known my balance was not good for some years but not worried too much about it. Where it really became a problem was going for’ard along a narrow sidedeck on the yacht which was difficult even with small waves. I had felt there was some improvement with the B12.

    Anyway I tested myself with the straight line heel to toe walk, and failed very badly.

    I then had 200 mg of SAMe (s adenosyl methionine.) Tried the exercise a few hours later and did it with no trouble. That dose lasted less than 24 hours and the problem returned. I repeated this four times with the same results. So reasonably suspect there is something in it.

    SAMe is involved in a number of reactions and requires B12 B6 and MTHF (methyltetrahydrofolate). Quite what else it effected is unknown and probably doesn’t matter. I had the cofactors including lecithin  anyway.

    Theoretically the dose is 400 -1600mg pd in 3-4 divided doses. However it is not cheap, and I find that 400mg tends to turn on the awake switch which may not be bad but may mean gradually introducing it.

    Looking it up I found it is absorbed in 2-3 hours and has a half life of about 2 hours, so very little would be left after say 12-15 hours. Hence the divided doses. Supposedly the liver makes about 5gm a day. It can be recycled. It protects the liver but the liver is also sensitive to free radicals alcohol and carbon tetrachloride etc. One of the end products is glutathione which is the body’s  main anti-oxidant. In theory a low dose should not work. In practice some research shows it turns on one of the enzymes sites involved in making it and has a disproportionate effect. Ok the biochemistry is complex and all interrelated. I have a couple of ideas to try.

    So there you are a possible thing to try with quick results. No guarantee as people differ. Here Tai Chi classes for the elderly are available free to improve balance and reduce falls. I suspect that one can improve by exercise including leg muscle training. Standing with 1 foot just directly in front of the other and doing hip rotations seems a good way to me.

    Yeah I know it is Christmas but I was totally sober lol. Hope that helps.

    • Posted

      Hi Chris,

      Thanks a bunch for your reply. You seem to be an expert here with quite a lot of information. What I understand here is that I should start him off at SAM-e? Can you put it simply as to how much dose should be for a day? I am sorry for my lack of knowledge here but I am kind of desperate here for help.

      I just got him tested again. He was on 500mcg methycobalamin IM's every alternate day for past one month almost. In between the IM's he was also taking 1000mcg sublingal methylcobalamin and sometimes I also gave him B12 liquid-That's 5000 mcg of b12 along with folate (albeit with a combination of methylcobalamin and cyano). His levels came up now at 2000 pg/ml! Don't you think it's a lot? Further, he tells me that he has only seen tiny bit of improvement and that too in the fatigue not much in the balance. I was told that balance issues will go in the end. But I am sort of worried now that since is his serum B12 is so high, why isn't the improvement coming? Can it be because of low vitamin D? Or it's because it takes time for B12 to get absorbed into the tissues? I am also giving him Co-Q10 and omega-3 supplements, and occasionally magnesium. 

      We don't have MMA or Homocysteine tests here but I am kind of confused as to where I am going wrong?

  • Posted

    No I am not an expert just a fellow traveller learning as I go.

    The path might be easier with various blood tests and genetic profiling, however they cost quite a bit.

    The commonest mistakes according to one expert is to use assuming not cyano or hydroxyCbl just the MeCbl.

    Four base things are required, mecbl, adenosyl cbl, tetrahydrofolate, and l-carnitine fumarate.

    The reasons being the active forms Mecbl and Adcbl feed into different pathways and catalyse different reactions.

    Some people can make one or both from hydroxyCbl some can't. The point of using both is that it becomes irrelevant whether you can or can't.

    10-20% can't change folic acid to methyltetrahydrofolate the active form and another 30-40% have compromised ability to do so. MeCbl and MTHF above are required to make methionine from homocysteineusing ATP to make SAMe. That is one pathway leading into the citric acid cycle to make the basic precursors of energy for the body.

    Another major path is where ADCbl is used within the mitrochondria to take the output from the citric cycle and make the basic energy provider ATP

    It is a bit more complicated in that supposedly Same acts as a switch to shift from the first pathway leading to SAMe to another path to make glutathione which is the body's major antioxidant if either there is enough SAMe or alternatively there is not enough antioxidant to reduce an oxidised form of CBL to the least oxidised form which is required.

    Of the two ideas I favour the second and will test it in the next few days.

    The reason being I know there is not enough SAMe by the response.

    To answer your questions specifically. No the level is fine it goes up with flooding but is largely irrelevant because what is needed is the forms and cofactors which do the work.

    The dose of SAMe ranges from 200-1600 mcg in divided doses because of the short halflife. I would start with 200, and many find 200-400 enough. If it is low you should se an effect rapidly.

    The liquid you refer to has this Folate (as Folic Acid)

    Vitamin B-12 5 mg (5,000 mcg) 83,333%

    [as Cyanocobalamin, Methylcobalamin (Co-enzyme

    Form) and Dibencozide (Co-enzyme Form).

    Dibencozide is AdCbl. However note that the amounts of the 3 forms is not specified, and my guess is that it is mainly CynCbl the cheapest.

    I take it you are sure he got MeCbl not hydroxy or cyano. If so the extra won't do much. I also note it is folic acid not the active form and some say it actually interferes as well as giving a false high folate reading.

    The lab tests are available from European Laboratory on request from a DR I would look at Glutathione reduced and total plus organic acidsSAMe, methionine, homocysteine and MMA. However even if you got a DR to request what he thought might help it might add up to a thousand or two euros.

    I gave the basics here and either before in your query or someone else's. Once those are started one at a time you can test out the amounts for a response. Unfortunately it is a bit like baking a cake, one ingredient alone will not do itbecause the body works on a lot of interacting functions. But once the base mix is in place you can finetune.

    I know I have given you a somewhat complex but very simplified account but you need to know why the various things are important.

    Some things can take a while to clear particularly the neurological. There are a few setbacks or complications possible. However in my view very often with the right step some positive change can be seen quickly.

    Ideally you would have a Dr who could guide you. However trying some of these things doesn't take long. Like a jigsaw it gradually becomes clearer.

  • Posted

    Hi

    How is he now. My level is 86.i have severe balance problem. Can this be resolved.

    • Posted

      I am cold always. I can't walk without support. I feel like I might fall down anytime. I had internal tremors which has reduced considerably. Brain fog apathy memory loss fatigue muscle fatigue severe gas problem

      .Are these reversible damages? I have a small kid and my life is hell now.

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