regarding a post today and the thread yesterday started by Carling on side effects…
I have struggled to understand if when members say that you can’t overdose on B12, and/or it is not toxic, is the underlying belief that hence, side effects are not possibly related to supplementing? I find a huge differentiation between side effects and toxicity but I am not sure that the statements, often made here, that one cannot overdose implies that that there are no side effects. I ask because I am super intolerant to most drugs and medications and have been told, my whole life, that any side effects I claim to be related to a drug/supplement are a figment of my imagination. (I am crazy, in other words). I have proven to myself over and over again, by withdrawing the suspected drug/supplement the “side effect” disappears. Perhaps, if not withdrawn, the substance would indeed become toxic. Jade this speaks to your point when you inquired about my (shorter) statement to Carling yesterday. So does “cannot overdose “ and “not toxic” mean no side effects possible? Again, I do not mean to sound critical or offensive, but am seeking clarification. Side effects of drugs/supplements have really affected my health as I often have to quit things my body might need BUT I always have to measure the risk/benefit.
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Thanks, Nackapan. I have no worries that it is toxic. I am just trying to believe that I am doing the right thing for myself with my dosing and frequency while trying to reduce any symptoms that may or may not be attributable to B12 deficiency. I have never worried that I could over-dose. I just have many co-existing conditions that make it all hard to sort out. I am super aware that what I attribute to side effects of other things. Sigh....it is all so hard to sort out...
I have never heard on this forum, in over 8 years , that anyone has suffered from side effects or toxicity from B12 injections, no matter how often administered . But that does not mean of course that it’s not possible for someone with a certain genetic disposition to have a reaction . But I believe it must be very rare . I have not seen any scientific paper that supports B12 as being toxic or as having side effects .
The side effect for me was just marvellous -getting rid of the hateful symptoms connected with Pernicious Anaemia.
I’m really sorry that you have that problem . But B12 comes in many forms - Cynocobalamin, Hydroxocobalamin, and Methylcobalamin. Maybe one of those forms would suit you ? Best wishes .
Thanks Wedgewood. You kind of hit the nail on the head. AFTER being diagnosed, I had a full genetic workup, and I have many mutations that support difficulty methylating and/ or metabolizing not just B12 but other vital nutrients such as Vitamin D. I had anaphylaxis to cyano, did not do well at all on methylcobalamin, (super stimulated and apparently my genetics don't like "methyl" forms as in the methyl form of folate) and because adenosyl is not available as an injection, I settled on hydroxy. I am just wondering why severe insomnia, consistently on the first few nights after an injection, is not considered a side effect.
I hope I am not being viewed as "crazy" or oppositional. Just wondering, and rethinking, though I am not sure why as I have increased my frequency to the point of tolerance of insomnia and vertigo. I have very severe malabsorption issues so I may not be absorbing all the co-factors I need which makes the injections less tolerable.
Maybe I am really crazy...that said, I still get so much out of reading this forum and it has empowered me to move further and further with the B12 treatment than I thought possible when I started.
I am really sorry that you have got these problems . Genetics will be more and more researched , and hopefully you will then get some help . I’m sorry that can’t be of help to you , but I assure you that you're not crazy or oppositional .
You can get Adenosylcobalamin in tablet form , but I don’t know if that might help you .
I tried adenosycobalamin sub-ligual for a while but I was so deficient it barely budged my levels which were, at onset, 112 (B12), homeocysteine 25 (high end of range is 10) and MMA 1.4 (high end of range is .25) My MMA normalized within a few low dose shots of hydroxy and my homocysteine is now 13, so almost w/i range. I was at a high risk for a heart attack or a stroke with those pre-treatment levels. So the therapy and dosing is telling me that the B12 is getting into my cells, but symptomatically, I have a ways to go. I read this site, religiously, and rely on it for guidance. Thank you. And yes, the genetics are way far ahead of genetic-based treatment. It is very complex. I have studied a lot and don't claim to understand much except that my genes have impacted me. I have genetic mutations in enzyme pathways that cause a problem metabolizing drugs and supplements and can significantly cause side effects that others would not have. In fact, I have a 62 year old sister who was diagnosed as schizophrenic at age 17 and has been in group living since. I often wonder if her genetics and lack of proper treatment was the under-lying cause. I am an exception to the rule, I think. Not a great place to be in the current state of medical care (or lack of)
I understand your feelings about what you are calling side effects. I, too, suffered from insomnia when I first started receiving injections. I also had tingling and some times I would get a bad headache after my shot, though it went away very quickly. My blood pressure went up after every shot. I know this because the nurse who gave me my loading doses also took my blood pressure. At one point she wanted to stop giving me my injections but I convinced her to continue. All of these side effects occurred during the first year I received B12 shots. I'm now several years into getting B12 shots once every three weeks and I no long have any side effects. Looking back, I am very certain these "side effects" I had were only symptoms of my body healing. You have nerve endings all over your body so it makes sense that when these nerve endings are finally being healed they will cause some kind of effect. Please just hang in there and continue getting B12 injections, eventually you will get to the top of the mountain and will be able to see a wonderful healthy future.
I too have insomnia if I do my B12 injection later in the day. Hydroxycobalamin. Now I do it first thing. I also developed high blood pressure but this may have been coincidental. I was told when asked on this site that it should lower blood pressure. In the meantime I have cut out a lot of carbs and upped my exercise with some good cardio stints. This has helped lower my BP and also reduced my need for B12. Best wishes
The only side affect I had during the loading stage, were quite a lot of hard spots breaking out on my forehead and a few dotted about my neck, back of ears and other areas.
I sometimes still do get the odd few but some research I read suggested it could happen to 1 in 10 people, so I must have been the chosen one.
Im into week 5 of 3 x week SI, and while I am more productive and creative and have less fatigue, spots are an unpleasant surprise for me - they started to appear in week 2. When did yours go? Did you take biotin during this time? Thanks!
It was 3+ months as a guess and I never took anything for it.
I still sometimes get some around the forehead temple areas now, I was never predispositioned to getting spots before B12 injections, infact it was very rare to get a single spot.
Glad you started a new thread. I think for the most part, when people say it's non-toxic & you can't overdose, it's in the sense that high doses won't damage your organs and won't kill you. And I think it's mainly said to convey how safe it is, that you cannot do permanent damage to yourself if you start to SI, from the B12 at least. And to counter the flawed statements from GPs.
Thing is, like wedgewood says above, I've not run into many people that had side effects, but if I think hard enough, I have indeed seen people on these forums who either can't tolerate them too frequently or can't handle high doses. But in 6 years I've been on various forums, it's only been a small handful of people. None of this is to dismiss it, just to explain where my bias is coming from.
In fact your reaction is similar to how I feel when people say folic acid is toxic. My folate levels are high and I'd die if I had to manage on only 400mcg, yet no one ever mentions some might need more (and there's no explanation, my genetic testing revealed nothing useful). Again I think it's a rare minority, but still. Makes you feel a bit crazy or doubt yourself, but we cannot deny what we experience!
I also like your discussion on genetics above. There is SO much yet to be discovered. I read a paper about a lady who had similar benign B12 related genetic variants as myself but no B12/folate deficiency. She had multiple children with spina bifida and neural tube defects, both associated with low B12/folate, and the authors conclude it may have been due to a combination of several of these benign variants combining to form some sort of functional? B12/folate deficiency. Fascinating but of course very sad for this lady and her family, and others struggling to explain what exactly is causing their issues.
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Back to you. First, you are NOT crazy! Just because you might be the only one to report a symptom, it doesn't mean you're misreading yourself, it just makes you unique. I think lots of us here are unique & why end up hanging around on these forums. As an analogy, if you go on the thyroid uk forum, you will see there are a few people that react violently to standard thyroid medication whom most people would call crazy, but we know they're not, their systems are just different for whatever reason.
It will be interesting if others report insomnia. I really can't remember if I've seen that as a side effect. Methyl, yes, as well as a very common side effect of deficiency.
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Some thoughts & questions. Sorry in advance for all the questions! I'm not trying to grill you or anything LOL, just trying to understand the timeline & the full context.
When exactly did the insomnia, vertigo, & other side effects start? Already from the first hydroxy injections, or later on?
Have you tried injecting a half or a quarter, or even less, of a dose? There's nothing set in stone that you need to do a full 1mg dose. In fact the US Actavis brand insert says: "Thirty mcg daily for 5 to 10 days followed by 100 to 200 mcg monthly injected intramuscularly." dailymed.nlm.nih.gov/dailym... I'd be dead on that dose LOL but it might work for you! Whatever you do, keep a log so it's easier to figure it out what's doing what.
When you tried cyano, was it a multiuse vial? The anaphylaxis could have been to the preservatives, such as sodium benzoate or parabens. You might not want to write cyano off completely, if you would be willing to trial a single use ampoule that is guaranteed not to have those preservatives. There are several Canadian pharmacies with single use vials but I have not checked the ingredients, otherwise Germany. I would understand if you would not want to retry it! Our own clivealive had an adverse reaction to hydroxy so he gets cyano. We're all so different aren't we?!
Are you still taking folinic acid and how are you dosing it? Daily or only on injection days or something else?
I realize you say it only happens when you inject, and I want to emphasize I believe you! Just in the spirit of covering all bases, I want to mention that some people react badly to fillers in oral supplements and medications, eg on the thyroiduk group, Mannitol & other fillers are known to give terrible side-effects, even if doctors don't believe it.
How are potassium levels?
I don't know much about methylation, but has your geneticist given advice on what things might support the suboptimal pathways? Or during your own readings have you encountered other treatment options applicable to your genetics? As an example, Betaine is given to people with the Cbl C variant. It's not for digestion, but to help convert homocysteine into methionine.
If you have malabsorption, injectable B complex exists. (No idea what the side effects are!). I did try injectable folic acid for a while but I think my body metabolized it too fast so it didn't work for me. I haven't personally tried other B's like this but I know at least 1 or 2 people on another forum that do this.
I didn't read through all your previous pasts but MokayD's reply to you on this post caught my eye healthunlocked.com/pasoc/po... but I guess you need to be careful with all supplements.
super-informative post jade_s. Especially the betaine. I take it for digestion but had no idea about its other qualities.
Amazing some of you have doctors who keep testing various levels of various supplements. And even genetics! Mine has left me with SI b12 (because I had to go to a private iron clinic to discover I had PA as well as Longhaul Covid, and NHS won’t give me the amount I need. With no hint of need for folate and other monitoring. Sink or swim.
just about betaine: there are two kinds. One for digestion, and one to support methylation. The second kind is called TMG, trimethylglycene. I just started SI a few weeks ago and the TMG is very helpful.
hi CaraEmilia,could you explain in what way taking TMG is helpful when S.I please.I have p.a and functional b12 deficiency and a particularity painful gut at times thanks to repeated attacks of HPylori and any tips are always welcome here many thanks.
I’m no expert, but as I understand it, the TMG converts homocysteine to methionine. Homocysteine build up is bad and makes you feel rubbish. It should convert, but if methylation cycle isn’t working, it can build up. TMG gives a shortcut to turn homocysteine back to methionine. In practice, I found it boosts my energy. I’ve tried both capsules and the crystals to dissolve in water. They taste awful, but are fast acting!
thanks so much for your prompt reply that’s great info to know,I had a look on Amazon and prices aren’t bad either for 90 day supply plus when you read the reviews it gives a good insight into their uses.
I will investigate a bit more now ,very interesting thank you again x
• in reply to
as an aside but relating to genetics,
MMA is an inherited condition caused by a faulty gene. Children with MMA lack a protein that the body needs to break down fats and cholesterol inside cells.
As a result these substances build up in cells causing damage to the brain ,liver,kidneys and other organs that gets worse over time.
This could be a reason that we suffer from high cholesterol as we get older so instead of investigating this we are palmed off with statins which then cause untold damage because we are not getting to the source of the problem,ie high MMA,could that maybe be why so many people have haemorrhagic strokes while on statins?
They recommend using TAT-MTS-Protein approach for the treatment of MMA. Good bit of research for anyone with high MMA here,I’ve never heard of any of this.
no, not the same thing. I was told that TMG is important to take alongside b12 to avoid build up, but again, not an expert! It does seem helpful though to me though.
"Trimethylglycine was the first betaine discovered; originally it was simply called betaine because, in the 19th century, it was discovered in sugar beets.[5] It has a sweet and umami taste. Since then, many other betaines have been discovered".
Sometimes you'll see TMG referred to as just Betaine, which is confusing as there are other betaines. en.m.wikipedia.org/wiki/Bet...
You might have seen TMG mentioned alongside B12 because TMG can independently recycle homocysteine to methionine and provide methyl groups (its glycine with three methyl groups attached). If you have trouble with stubbornly high homocysteine despite adequate levels of B12, folate and other methylation ingredients, TMG might be worth investigating.
Like you, I've been left to sink or swim. I SI on my own. A functional / naturopathic doctor helped me with the genetic testing. She is really great but expensive. I do online appointments when I can afford it. It's too bad that our GPs and specialists often don't help us when results are 'normal'. A lucky have found specialists to help them.
I was not sure about what form of betaine was given so grateful for the other replies.
Yes. Always so much to learn. You can see why doctors shy away from dealing with it. Chemistry of the body so complex. Yet some pretty fierce drugs are supplied.
I got my genetic testing on my own except for one test ordered by the Mayo Clinic 20 years ago. (They suspected I wasn’t metabolizing drugs right) The genetics confirmed that. Since then genetic testing has burgeoned into a huge industry. I have mail-ordered two different sets of DNA testing after studying exactly which genes these tests would address (as we have thousands of genes). The first set of tests I ordered were more nutrition related and revealed multiple mutations involving Vitamin B’s, vitamin D and also, ability to convert homocysteine to methionine. So I learned a lot from that but my docs didn’t know what to do with it. Oh, I forgot. About 10 years ago, a functional medicine doctor tested my MTHFR gene and yes I have the homozygous mutation which affects the whole methylation cycle. I also have a homozygous MTRR gene involving this methylation cycle along with VDR defect that affects vitamin D metabolism. (These I found with my independently ordered test.
This past year I studied all the tests available and found one that tested genes needed for various pharmaceuticals. I found I have a double mutation in the CYP450 enzyme that is needed to metabolize at least 50% of all drugs, so I metabolize most drugs (and probably supplements) either incompletely or at a much slower rate. This result did not surprise me, as for years, my body has over-reacted to medications and I have had to use pediatric doses to start and often stay there.
The point is there are a lot of genetic tests out there. They are expensive. You have to know what you are looking for before you order. Then you have to be ready to do your own research on what the results mean. Recently a doctor wanted to give me a controversial treatment for pain. I spent several days studying and compiling the results of my study. My genetics clearly showed the recommended drug would likely either be ineffective or even dangerous for me. My doctor didn’t really consider the genetics/research. He still thought it was “worth a try”. Turns out insurance wouldn’t cover it anyway. I think I dodged a bullet. This pharmaceutically slanted genetic test came with recommendations of drugs that were and were not suited for my genetics.
I went to a geneticist once. He was only interested in “inborn errors of metabolism.” He dismissed my worries about vitamin B12 and vitamin D as nothing to worry about. Apparently he only wanted research cases or something. After he determined I didn’t have any of the “biggies” he was done with me. Apparently malnutrition and chronic pain is “small potatoes” for him
Sorry this is so long. It is posted for those who referenced genetic stuff and for anyone who has some of the same questions I did. Having this information hasn’t cured me as one cannot fix their genes but it can steer you down an alternate path and help you understand your body’s reaction to most everything. I am no expert. I have just had to study a lot to help myself. It has taken me years to understand any of this and I probably don’t even know the half of it!
Thank you for taking so much time to reply. I am having one of my not so good days so I will reply in part now. and maybe answer more questions in a few days. Yes, I am unique, and told so by nearly every practitioner I see; I react to so many things and am an aberration, I realize, which is why I continue to study and research to try to work towards healing without causing any more problems for myself.
More later but I appreciate your attempt to make me not feel like a freak...because I do...but I always have. Truly my genetics and epigenetics explain an awful lot. Sadly, I understand that the science is way ahead of the therapeutic treatment for these problems I was born with. I don't think it will be in my lifetime that medical practice will catch up with all the information we can now access about how and why we respond to various treatments, foods, chemicals, sensory things, etc.
I do speak up here because I am guessing there are other people out there who have unusual reactions to things and may be hesitant to speak up. So I speak for them, too, but it isn't always easy...
I also hesitate to bring up genetic stuff because genetic testing is expensive, complicated, and can plant seeds of worry that are unnecessary. Also most all doctors have not a clue what to do with the information....I have found that out the hard, expensive way.
Thank you again. I participate in other forums as well, and I think tunnel vision can happen when we focus on just one particular health concern. If only I just had B deficiency to deal with...
I hope you have a better day soon. No worries take your time and in fact you don't even have to reply. Just food for thought.
It's tiring to advocate for ones self & also speak for others so it's appreciated that you do, for sure! As for genetic testing, I think it's good that people at least know there's that option. You're right though, hard to know what to do with the info if the research isn't there.
I need 2 hands to count all my medical issues and they all seem to interact with each other so I can somewhat appreciate the challenges you might be dealing with. Tough doing it alone especially if doctors don't understand it either.
And thank you for helping me too. I do need to dig further into the tunnel vision thing. It's not for lack of diseases to deal with in my case lol. Part of it is probably groupthink. Part of it is indeed some people only deal with B12. Anyway talking about it is part of the cure, I hope! Take care.
I'm sorry you're struggling now. Frustrating to start getting issues seemingly out of nowhere. Hopefulky someone will have some ideas. I will try to find that pulse paper.
morning EiCa! I also suffer terrible insomnia after my shot,I feel like I’m totally wired,have restless legs and terrible thumping head too,I suffer from chronic migraines since having a brain injury and they are very easily triggered.This last for around three days after a shot and has been a new thing for me ,I’ve been self injecting for around 3 years now and used to get a great sleep but for the last year I’ve noticed this I thought it was maybe because I get worked up before a shot,I hate doing them.
Like you I also suffer from terrible reactions to things,I struggle to get an antibiotic that I don’t react to,sometimes quite seriously to,and even painkillers give me bad reactions. I can use a skin cream then overnight develop a bad reaction and my face will be scalded, last bad effect I had I’d put on a pair of those wee blue gloves to clean up some cat vomit and I didn’t wash my hands straight away after I’d taken them off and must have touched my face and the white powder inside gloves had got on my face and I had a terrible reaction rushed down to gp surgery and they wouldn’t see me said go to urgent care we have no appointments or go to pharmacy which they knew fine well was closed for lunch,I was in a terrible state my face was on fire,luckily I had decent antihistamines that worked within 20 mins.
As for genetic testing I had this done for my thyroid and it came back that I had the faulty gene variant from both parents so it was likely that I wasn’t converting t4 to t3 but as previously said the gps have no idea how to deal with this info and think we are all nuts for having genetic testing.
I did read this week I think it was Pulse online,that they are now trialing gp practices doing genetic testing before prescribing certain drugs like antidepressants statins etc ,I think it’s Manchester they are starting the trials in, because they recognise that people with certain genetic dispositions cannot process these medications,maybe our clever Jade-s could find the article for you im hopeless with the iPad.
I don’t believe that b12 can have no side effects as we know that genetically many things are different in how we as individuals process stuff ,as for non toxidity again as far as we are aware going on medical evidence it would appear it’s non toxic but I guess that could also be debatable from a genetic viewpoint. I’m no expert I’m just putting down my thoughts and experiences.
Anyway there’s no easy answer and I don’t see as yet we have many options,I’m due a shot today and as usual I have t work up to it and I know the odds are I’ll have another rotten few nights after I do it but I have no option I can’t risk the consequences again of not doing them.
From yesterday's Pulse: GP practices to trial genetic testing ahead of statin, PPI and antidepressant prescribing pulsetoday.co.uk/news/clini... very interesting. Thanks for the heads up Happypensionerclub!
Hey, thanks. I am sorry about the insomnia. I do not feel it is a lesser side effect. I am rendered totally dysfunctional after no sleep. I literally lose a whole day each time. I feel your pain but we have no choice so we go forward.
This is probably totally unnecessary to mention, but I take my shot as early in the morning as I can, hoping to have metabolized more of it by bedtime. My genetic testing has shown me to be a “slow to intermediate” metabolizer of many drugs and supps, so the half-life of everything is lengthened considerably.
Wishing you a better night, post-jab, than expected. Thank you again for sharing your experience.
hi I hope your feeling a bit better today, I do my shot after I’ve eaten in the morning,I always have a banana in the mornings for potassium and one after dinner at night as I find it stop the leg cramps and constipation.
I’m the same I cannot function well with no sleep it drains me and I’m so nauseous.
Again I’ve not jabbed today I couldn’t face it so it’ll now play on my mind again till I do it,vicious circle for me.many thanks x
Although B12 is nontoxic (has no tolerable upper limit set) and cannot be overdosed, that doesn't mean that there is no chance of side effects, which may even be serious or life threatening. In rare cases, Cyanocobalamin has been observed to cause anaphylactic shock, a severe allergic reaction which requires emergency medical treatment. This is I believe only observed in the first or second injection which is why its common to advise people to get their first injection in a medical setting so that help can be on hand "just in case".
Many people also do not get on well with methylcobalamin, in injected or pill/tablet form, experencing side effects such as anxiety, insomnia and others. The effects are typically resolved by stopping methylcobalamin and I have never heard of lasting side effects.
When Cyanokit is applied to treat Cyanide poisoning, massive doses of B12 are used well in excess of what members would inject to treat deficiency. There are side effects which include a temporary change to pink color of neck and face and urine changing to a pink color. Acne does seem to occur as a side effect sometimes of either injections or even of B12 tablets, but it can be difficult to exclude sometimes whether that is caused by some additional ingredient, allergy, another deficiency orimbalance, or the B12 itself.
When people who are very deficient get a B12 injection, the effects can be very strong - when I started my injections I had increased perceived muscle weakness, aches and pains of all kinds, headache, nausea, new pins and needles etc etc - I dont think these are properly described as side effects though because nothing like that happens when I get a B12 injection now - rather its the literal direct effect of the B12 entering the system and kickstarting repairs - nerves coming back to life etc. These are not not so much "side" effects as the actual effects of B12 in a body that didnt have enough of it for a long time - an inevitable part of the healing process.
yes, Nackapan. As I wrote to Technoid, I was very deficient and undiagnosed for years. Perhaps I should start using the phrase “healing symptoms” instead of side effects. (Or early side effects as mine were much worse a year ago)Thanks.
yes, Technoid. I was very deficient and undiagnosed for years. Perhaps I should start using the phrase “healing symptoms” instead of side effects. (Or early side effects as mine were much worse a year ago)
it’s always possible that it’s one of the ingredients used when products are made that’s causing symptoms.
In my case one generic brand of b12 solution has hydrochloric acid to balance the ph level , this caused a reaction for me , tight/sore hands , red spots and severe itching . Using the brand name I have no problems. It uses acetic acid to balance ph.
I use PanPharma individual hydroxy ampoules. I think it is the best source for me. I do believe preservatives in the 30 ml vials I got a few times added to the problems I had. Thanks. I avoid unnecessary ingredients in everything and eat few processed foods. I even make my own cleaning and hygiene products.
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I think for the most part, when people say it's non-toxic & you can't overdose, it's in the sense that high doses won't damage your organs and won't kill you. And I think it's mainly said to convey how safe it is, that you cannot do permanent damage to yourself if you start to SI, from the B12 at least. And to counter the flawed statements from GPs. 
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