Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

The B12 trials

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Having had some relatively helpful improvements taking methyl-B12, and some fairly awful experiences taking other methyl donors like folate, especially when trying to come down off them, I’ve been meaning to get round to doing another isolated B12 trial for a while. Earlier this year I did one. It lasted for around two and a half months.

The RDA for B12 is only about 2.4 micrograms in the US and 1 microgram in the EC. There have been calls from some quarters to increase the RDA by 500% to around 5 micrograms, a dose that is easily obtainable in the diet if you eat meat, but very difficult to obtain if you only eat eggs and dairy, and very variable in different types of fish. I get several hundred times the RDA of B12 in my diet daily. I do not have absorbency problems with B12, because I can feel the effects and side effects of B12 when I take a relatively small dose.

Yasko’s nutrigenomics protocol (which I will critique at a later date), tests for a number of genetic variations in the capacity of the body to reduce (recycle) oxidised B12, the theory being that if you have a poor capacity to recycle B12, you will have a higher dietary requirement than other people.

There are various types of B12 – cyanocobalamin, adenosylcobalamin, hydroxycobalamin, and methylcobalamin. All are active in the body. Cyanocobalamin is thought to be the least useful to the body but is the type usually found in vitamin supplements. B12 is used by the body to detoxify cyanide (i.e. cyano-), so this does make sense. Hydroxycobalamin is the type typically found in meat, along with some adenosylcobalamin. Apparently methylcobalamin is only found in significant amounts in milk, suggesting it may be required by infants and young animals. The body also uses B12 to detoxify sulphites to some extent, forming sulfitocobalamin – thought to be a toxic compound in its own right.

I used a Metabolics adenosylcobalamin supplement in capsule form. I chose this over hydroxycobalamin purely because I could not obtain hydroxycobalamin in powder form. Each capsule contains 1 milligram (1000 micrograms) of B12. This is an enormous dose, approximately 100,000 times the EC RDA. I have taken very large doses of B12 on a number of occasions. I experience some rather peculiar effects from a large dose of B12. I often become twitchy and very anxious and stressed. I also get the most excruciating ‘trapped nerve’ pain down the side of my neck. I had no intention of taking large doses of B12, instead I broke open each capsule and sprinkled a tiny amount on my tongue. I could make one capsule last over a week. This means I was still taking quite a large dose, but not large enough to give me nerve pain.

B12 does some very interesting things to me. Firstly, it makes me feel more intelligent. I feel wittier, brighter, more cheerful, more motivated, and more chatty. It makes me just a wee bit too happy. It also seems to have the peculiar effect of turning me into social dynamite. Gee, I never knew I could be so funny and entertaining that people ask me for my phone number and email address [the slight problem with this is that I never answer my phone unless I know who is calling!]. It also gives me more energy. Food chemicals, alcohol and stress often leave me feeling drained and fibromyalgic, and B12 seemed to negate some of this.

I have an online friend who tried taking B12 and after a couple of weeks experienced a seizure – I think complex partial. She is doing a nutrition degree and after researching this she discovered that B12 has the ability to depress a form of glutamate decarboxylase (GAD67) that converts glutamate into GABA. The symptoms I am going to describe make perfect sense in this context. Interestingly, the Japanese regard glutamate as making you more intelligent, which has something to do with why they eat miso soup for breakfast. Though I imagine several thousand Japanese commuters who’ve just eaten miso soup for breakfast won’t be in the best of moods.

The downside changes B12 makes to my personality are that I become a lot more irritable and emotional. Some people like melodrama in their lives. I don’t. I cry more easily. I become stressed more easily. I become more judgemental. I have a very low tolerance threshold for anger. The thing about being irritable is that irritability is completely invisible when you are on your own or things are going your way. Then someone crosses your path and confounds you, the dog does something naughty, a driver does something stupid on the road, and instead of coping and carrying on you get disproportionately cross about it. Exploding unpredictably might be something that earns you a little respect and fear, but it’s an extremely unattractive personality trait.

B12 also seems to ease my chronic back pain. The back pain is related to a lot of things. Food chemicals play a very significant part in it, particularly amines, which are always vile, but also salicylates. Propionates (E282) have me in absolute agony after a sneaky build up, and gluten and A1 casein give me a chronic low-level ache. But it’s also a repetitive strain type injury. It’s partly because we have an awful mattress that needs replacing – when we had a foam mattress a couple of years ago my back was great. I spend too much time using a laptop on my lap. I can’t sit at desks for very long as my former DVT leg starts to swell up and hurt because the valves in my leg vein are permanently damaged. So instead I sit on the sofa with my legs on a footstool or folded to one side and hunch a bit over my laptop, which puts pressure on the top third of my spine and my neck. Also, I have Lara Croft boobs, which sounds great if you don’t have them, but in practice they give me back pain. If someone offered me a reduction to a B or a C cup I would take it without hesitation because at my minimum BMI I was still a 32D. I also have lower back problems as well as upper back problems. I’m not sure which is worse. If I stand or walk around all day my upper back is a lot better, but I feel like someone’s been pile driving my spine into my pelvis. I can make the bottom of my back make an audible cracking sound by wriggling around a bit. B12 doesn’t get rid of my back pain entirely but it does seem to help lessen it. So does sunlight. So does a ketogenic diet.

I also experienced improvements in my skin. B12 did not make my skin perfect, but it seemed to lessen some of the bumps and red patches that flare up on my skin after I eat amines, additives or caffeine. However, I did experience some tinnitus.

B12 significantly improves my amine/salicylate tolerance. As well as damping down skin reactions the day after eating food chemicals, it also lessened the hangover/brain fog symptoms I get. However, this leads to problems because I feel I can cheat. My skin actually got significantly worse in practice because I felt I could get away with more and obviously I couldn’t. B12 seems to prevent some of the skin problems that flare up when I take folate or other methyl donors. However taking a multivitamin and some B12 still left me feeling significantly foggier and itchier than if I had done nothing at all. Unfortunately B12 does not negate food reactions, not even in a very high dose. I still feel off the day after eating something bad, however, a whole capsule megadose did come in very handy recently when I had no choice but to eat a curry (lovely red colouring and spices in it) with some friends. I have done this a few times now and I am usually wiped out for the whole of the next day. In this case I still made lots of silly mistakes and was very cross (not great when you have a four hour drive to make on hangover day). But I wasn’t bedridden, as I have been on previous occasions.

I often have problems waking up in the morning, especially after consuming food chemicals, and B12 seems to help quite a lot with this. I feel like I need less sleep and I wake up faster. In fact I generally feel more awake. It’s something I first caught on to after eating some clams one night and bouncing out of bed early the following morning. Clams are very rich in B12. Something else that helps me to wake up in the morning is tonic water. Tonic water contains quninine, a stimulant, which may also be, interestingly, a folate antagonist.

Returning to the notion of B12 as having glutamergic effects, this makes sense. Some anti-narcolepsy stimulants like provigil are thought to have glutamergic effects as well as raising monoamine levels. What is curious is that some people also experience drowsiness when they consume glutamates. I have been kept awake by glutamates and I have been sent to sleep by them (and I have been made totally autistic and spaced out by them). This may have something to do with the way glutamate interacts with other neurotransmitters at different times of the day. B12, however, always kept me awake and did not make me any more autistic than normal.

The downside of feeling awake is that B12 also gives me insomnia. Quite bad insomnia. It takes me a couple of hours to get to sleep. I’ve heard some people say that this ‘wears off’ as you get used to the B12. I have news: like hell it does. Two and a half months later I still had insomnia like this. Also, in the process of falling asleep I experience unpleasant heart palpitations and skipped heart beats, and hypnic jerks – little tiny myoclonic seizures as you’re falling asleep. One night shortly after I started the experiment, I had a hypnic jerk in the night that was so bad it threw both of my arms forward and I actually sat up in bed. My partner has JME and he had symmetrical arm seizures like these before we got him medicated properly. The palpitations and hypnic jerks did lessen, but they were still more frequent than usual. I also had a few moments when I was awake that felt like twitches or electric shocks, or, almost as though I had missed a second when I was doing something or watching something move. This is not good, in fact, it’s quite scary. Having a lapse like that when you are holding a kettle, cooking, or driving, is a fairly bad idea.

Apart from the irritability and the reduced tolerance of stress, the biggest downside to taking B12 was the weight gain. I have had very stable weight for a long time now, but I gained around five pounds during the two and a half month period I was taking the B12. This was not just because I ‘cheated’ more. On occasions when I tried taking a whole capsule, I would usually wake up the next day a pound or half a pound heavier. Though B12 did increase my appetite, I did monitor my calorie intake, and as usual, the weight gain was disproportionate – particularly as I was much more active than usual. It was real weight – fat – not muscle or water – and it did not come off of its own accord. B12 did not negate the weight gain I experience when I eat amines either, instead it contributed.

Something important to note is that during this experiment, I felt really very good for the first 2-3 weeks, then I started to feel less good and old symptoms started filtering through again – so either my body started to get used to the B12, or something else was missing or being depleted. A couple of years ago I would have come to the second conclusion, these days I am inclined towards the first.

I dreaded ending the trial but I could not continue to gain weight at the pace I was going. I have experienced awful withdrawal symptoms from taking methyl donors, and as B12 feeds into the methylation cycle, I was expecting to experience them again when coming down off B12. But I didn’t. This was totally astonishing. When I stopped taking B12 I just felt really, really calm and relaxed. I felt glad and relieved to have ended the experiment and to have stopped feeling so short tempered and unpredictable. If I became stupider again, I didn’t notice it. But then, when you’re stupid you don’t pick up on things, that’s the whole definition.

Would I take B12 over doing a ketogenic diet? And here, by a ketogenic diet, I mean a diet that is carbohydrate and calorie controlled – it tends to lose its effect if I reach a metabolic equilibrium.

No I wouldn’t. A ketogenic diet causes very similar improvements to how I feel and my various chronic symptoms, with the exception that it is not as good at negating reactions to food chemicals. However a ketogenic diet makes me feel a lot more motivated and energetic than B12 does. It also comes with the advantage that I remain very calm and stress-free and not prone to emotional swings. On a ketogenic diet, which reduces the impact of glutamate, I feel like I can cope with anything.

I have decided not to take B12 permanently due to the negative side effects, which are pretty much as bad in their own way as being off failsafe. Perhaps in the future I will find a way to counteract the glutamate-agonist response (B6, K2, glycine, glutamine, theanine, or ketosis are all potential options). However, I do believe I will find it most useful if I take B12 when I am forced to eat off-diet, in order to counteract strong negative reactions to food chemicals.

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Written by alienrobotgirl

10 June, 2008 at 12:48 am

Posted in Vitamins

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8 Responses

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  1. Wow! How very interesting.

    I am actually doing a B12 trial again myself with low careful doses using the Metabolics Adenosylcobalamin.

    In the past, as you know, my experiences with B12 have been pretty dire and I would at least develop a horrible migrainey type symptom or completely space out after taking it.

    Well I’ve been on failsafe long enough now that I can now take this form at least with only a limited amount of side effects! This is why I truely believe in the healing power of this diet because my reactions are just dissappearing slowly but steadily. My reactions to supplements in general are now quite limited, folate and vitamin D are still reactive for me.

    Well here is the interesting part – my reactions to B12 are somewhat different to yours. My glutamate levels are raised (but not significantly). I think this might be an interaction with CBS rather than GAD. My dopamine raises quite a bit and I become more withdrawn and Aspie. At the same time I feel on the even keel and relaxed which is wonderful because i’m usually stressed all the time on straight failsafe. I think this might be because on the failsafe diet and egg consumption i’m more likely pushing that BHMT direction which raises your adrenaline levels whereas the primary B12 route raises dopamine. I think my dopamine is leveling out though now so maybe my brain just needed to readjust a bit. Similarly I have more energy, less sleepy in the morning, brain feels clearer but I haven’t had the insomnia, hypnic jerks (I think folate does this) and scary electrical shocks… I’m feeling lucky.

    I’ve actually had to drop eggs out of my diet for the trial at least because i’ve had enough of these egg reactions which I think must be to do excess cysteine and the B12 made them even worse (exhaustion, pain, illness, rash, brainfog – must be the CBS/SUOX combo).

    Actually my reactions to eggs have become worse and worse as time has progressed. I’m hoping this is a sign that my methylation is naturally fixing itself but of course this means more pressure on my transulfuration pathway).

    “I can make the bottom of my back make an audible cracking sound by wriggling around a bit.”

    I get this too! A poor mattress can make an awful lot of difference to how much pain I get at night. I had to go for physio for a while but I tell you the main thing that fixed it was sleeping with a pillow under my lower back, I highly recommend it. Chemicals only bring me pain in my upper back so the two are distinct for me.

    So what do you think this says about your genetics? 😀

    Elena

    piratehyde

    13 June, 2008 at 9:34 pm

  2. And so the fun begins… For curiosity sake I have been taking pinhead size doses of MeB12 just for a few days. MeB12 does the complete opposite to me that AdenoB12 does! My serotonin goes way up, I feel like i’m on caffeine, I have ADD, I want to be socialble and do as many things as possible. At the same time I feel horribly stressed, worried and shy. Its uncomfortable and doesn’t conform to my “preferred” personality in any way so i’m stopping that one for sure.

    I really will start a blog to write these things on some day!

    Elena

    piratehyde

    14 June, 2008 at 10:44 am

  3. Hi Elena

    I get no reaction to Woodland’s sheep’s milk yoghurt at all, so there could be something else going on with you.

    Sorry you’ve had to drop eggs.

    Your reactions to MeB12 sound a lot like mine. Ugh!

    Very interesting about the SUOX thing. I haven’t been able to match up the letters Yasko uses to an actual polymorphism in the gene DB, so I just assumed it was the common downreg that has been linked to sulphite intolerance. I wonder what her thinking is with that one?

    Check out your post on the PPRS Community I’ve put a comment there.

    alienrobotgirl

    1 July, 2008 at 9:14 am

  4. Hi,

    I don’t know if you follow the posts on FailsafeNT, I forget what I write now. Anyway I was saying I actually tolerate the sheep’s yoghurt extremely well in terms of chemicals, I think being in ketosis must be helping with the glutamates? (if you still are). Its just the diarrhea for me that’s a problem. Well it’s not a big deal, i’m not a huge fan of that sour yogurt taste anymore.

    I guess Yasko is concerned with increased requirements for B12 with SUOX. I react to sulphur and sulphites but my asthma is so mild, I actually get worse asthma from over exercising. Everybody is different…!

    piratehyde

    1 July, 2008 at 5:21 pm

  5. Hi Elena. I think you are right about the yoghurt. I wonder if this has anything to do with coeliac disease again? Perhaps you still have damage that is allowing bacterial overgrowth in the small intestine. What happens if the yoghurt is heated – i.e. the lactobacillus are killed?

    alienrobotgirl

    6 July, 2008 at 2:10 pm

  6. […] B12 and K2 trials zzzzz Posted in Vitamins by the witch on August 11th, 2008 I did a B12 trial earlier this year. I found that B12 seemed to be useful in helping me recover from food chemical […]

  7. I have the C677T gene and have had bone spurs / fusing vertebra as a child, visual migraines, skin rashes and difficulty focusing. Methyl B12 and the 5-MTHF folates have really helped me. Given your stated sensitivity please take a very small portion of one capsule for the first week if you choise to try this.

    http://www.hsfighters.com/folate_not_folicacid.htm

    Folic acid is often labeled folate or folicin. However, none of these are the active form of folate (known as 5-MTHF or l-methylfolate) your body can absorb and put to work. It takes four separate biochemical reactions for your body to turn folic acid into active folate:

    http://www.vrp.com/articles.aspx?ProdID=2648

    The human body can generally convert basic forms of nutrients into their biological active forms, yet there are times where the process of conversion is either faulty or incapable of optimally performing this health-sustaining transformation. 5-MTHF, often abbreviated MTHF, is the most biologically active form of folate and is the molecule to which folic acid must be converted in the body to be utilized.

    http://www.needs.com/product/Thorne_Research_Folacal_800_mcg_60/b_Thorne

    Another item to consider is some of the ADHD herbs.

    The effect of polyphenolic extract from pine bark, Pycnogenol on the level of glutathione in children suffering from attention deficit hyperactivity disorder (ADHD)

    Dvoráková M et al.
    Redox Rep. 2006;11(4):163-72.

    Attention deficit hyperactivity disorder (ADHD) belongs to the neurodevelopmental disorders characterized by impulsivity, distractibility and hyperactivity. In the pathogenesis of ADHD genetic and non-genetic factors play an important role. It is assumed that one of non-genetic factors should be oxidative stress. Pycnogenol, an extract from the pine bark, consists of bioflavonoids, catechins, procyanidins and phenolic acids. Pycnogenol acts as powerful antioxidant, chelating agent; it stimulates the activities of some enzymes, like SOD, eNOS, and exhibits other biological activities. AIM: The aim of this randomized, double-blind, placebo-controlled trial was to investigate the influence of administered Pycnogenol or placebo on the level of reduced (GSH) and oxidized (GSSG) glutathione in children suffering from ADHD and on total antioxidant status (TAS). This is the first investigation of the redox glutathione state in relation to ADHD. RESULTS: One month of Pycnogenol administration (1 mg/kg body weight/day) caused a significant decrease in GSSG and a highly significant increase in GSH levels as well as improvement of GSH/GSSG ratio in comparison to a group of patients taking a placebo. TAS in children with ADHD was decreased in comparison with reference values. Pycnogenol administration normalizes TAS of ADHD children.
    PMID: 16984739

    skiwaterorsnow

    8 July, 2009 at 5:57 am

  8. Hi,

    I can’t take any form of folate. I find only adenosyl or hydroxy cobalamin are helpful. This is possibly because I have a B12 deficiency, due to all my problems being caused by hypothyroidism, which inherently tends to cause B12 deficiency. For some people, folate “masks” a B12 deficiency, for others, it brings out symptoms.

    Pycnogenol gives me negative symptoms, like most polyphenols, it is salicylate-like. I’m not sure of the usefulness of glutathione in all cases or in my case.

    alienrobotgirl

    14 July, 2009 at 11:33 pm


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