Am I overdoing it on the B12? - Pernicious Anaemi...

Pernicious Anaemia Society

31,939 members23,081 posts

Am I overdoing it on the B12?

Zeffy90 profile image
11 Replies

I know this question has been asked many times but I am full of doubts. I found out I was b12 deficient last summer, my levels were very low (24 pg/ml) despite taking multivitamins for months. I felt very sick. My main symptoms were extreme fatigue, brain fog, cognitive impairment, eyes twitching and ibs. After a week of loading dose, I started SI cyanocobalamin weekly. My symptoms improved a lot at first. But after two months my symptoms came back especially fatigue, cognitive impairment and eyelid twitching. I tried injecting more frequently and found out that if I inject every other day my eyes stop twitching. So for the past months I have been SI every other day and changed recently to hydroxocobalamin (I'm taking 400 mcg of methylfolate too). Lately I have been suffering from continuos legs tingling. It is very annoying. Am I overdoing it with b12? I'm asking this because this site reports tingling as a side effect of to much b12.

insider.com/vitamin-b12-ove...

Written by
Zeffy90 profile image
Zeffy90
To view profiles and participate in discussions please or .
Read more about...
11 Replies
Nackapan profile image
Nackapan

I woukd first see what is what by process of elimination. My personal opinion would be yo stop the methyfolate to see if you feel any different.

I initially was taking too many vitamin supplements I think basically 'throwing everything in the pan ' trying to get better.

The one thing I did need to stop for a while was folic acid . I went by blood test results.

I now only have it in a multivit 200mcg 3 x a week. I obviously csn absorb from food.

Not sure if methyfolate xsn give side effects.

Also strip back other vits then reintroduce them.

Make notes.

Hydroxocobalamin is said to stay in the system longer so when you've worked out vitamins perhaod try every 3rd day .

It's best to fo trials for a few months st least unless of course you get clear symptoms that more regular injections get rid of.

You know you cannot overdoses on b12.

Everyone needs a different cocktail it seems.

Good to get bloods done to check things.

Not b12 obviously

Gambit62 profile image
Gambit62Administrator in reply to Nackapan

on AVERAGE hydroxocobalamin is retained 2x as long as cyanocobalamin but the test that established this also showed a huge amount of variation between individuals with some actually retaining cyano longer than hydroxo. These weren't huge studies so the assumption that hydroxo can be given less frequently to all patients is based on extremely dodgy logic.

Sammyo23 profile image
Sammyo23

How much hydro are you injecting? Is the methl injected as well, or is this in pill form?

What else are you taking, too?

There could be any number of other factors at work here besides the b12, which you seem to need frequently to feel normal.

Could it be that the nerves in your legs and feet were damaged and the tingling you feel is them healing?

Zeffy90 profile image
Zeffy90 in reply to Sammyo23

I'm injecting 1ml of Hydroxocobalamin eod and taking a methylfolate pill every day (400 mcg). I don't take any other supplement. Before the injections, I had sciatica but no other problems with my legs.

Gambit62 profile image
Gambit62Administrator

I would take the site with a pinch of salt. Some people do find that a B12 injection can wipe them out for 24 hours or so but that is a long way from being the majority.I'd also feel a bit uncomfortable that the conditions causing high B12 includes diabetes ... there isn't a direct mechanism that would cause this though the fact that CKD (chronic kidney disease) is a common consequence of poorly controlled sugar levels would mean that I would expect to see a higher proportion of raised serum B12 in diabetic patients than the normal population but it is the CKD that is the causal factor not diabetes itself.

Zeffy90 profile image
Zeffy90 in reply to Gambit62

This site also reports tingling as a symptom of overdose. So I do not know whether to consider it as a symptom of recovery or overdose.

fastmed.com/health-resource...

Lunario profile image
Lunario in reply to Zeffy90

This is the first time I've seen these symptoms listed as a result of a possible overdose. I don't think that's true, at least not for someone with a deficiency caused by PA or celiac disease (and some other non-diet-related causes). We know that exacerbations like these can occur in the early stages of treatment, but they resolve over time.

I was only taking a tablet and only for a bit over a week. I got stabbing shooting pains all over and couldn't put on my socks without falling over...my balance and coordination were bad from it. I disnt take any yesterday and as the day wore on I felt better and better. I don't know if it was the b complex of the b12 or mine was cyanocobalomin so some people are sensitive to the cyanide or so I have read. The side effects didn't mention any of these things just as you said tingling and nausia dioria headaches...I didn't have any of that. But I couldn't think it was a good thing to be losing my balance. I tested my ability to stand on one leg tpday and coordinate my hands and they seemed much better. No falling over and got my socks on without incident. So I can't say for anyone else but for me b12 has twice caused me to feel terrible. The first time it helped for a while and then started to give me aches ..it did get rid of my tinnitus and skin crawling and that didn't come back after I stopped. It got rid of my tinnitus this time too and there's a slight hissing there today but being able to put my socks on without falling over on the bed is enough compensation for me. If it is so easy to topple the balance from needing it to having too much as it seems to be so for me. But then I can alsl understand how if a nerve is regenerating it is like a new nerve that doesn't yet know how to balance or how to submit data...so it felt rather like having toddlet hands ...so I can understand why a nerve would be stupid when its just being rebuilt and tingle and feel all wrong to your brain. I mean imagine you had grafted a nerve into your arm surgically it would be getting all this information all of a sudden and your brain wouldn't know how to process that properly or send signals properly for quite a while. I am going to try again using food since I don't have pa ...and take it slowly maybe even in chunks... I know from when my mom broke her hip and she had rehab that relearning to use damaged nerves takes work and is painful. Right now I'm moving house so its not a good time for rehabbing my nerves. But I suspect that a lot of thework of healing will be painful. Also fronr leading what people say here they feel better at first then feel pain or discomfort and I imagine those periods of discomfort are really important steps in the development of new nerves. Nobody has said this so its just what I am thinking....and not a fully formed theory...just a hunch... That the b12 feels good because its needed ..but then when new nerve is growing it feels quite aweful I mean even new skin feels all tingly as its growing back and itchy...but were you to avoid the itch and stop the regeneration process your wound would never heal. Even things like trauma you have to go through a certain amount of pain before things heal. So I think what's happening is our nerves have been damaged and the brain has numbed them to make it possible for us to go on.... It shuts off some signals...and then when we take b12 it opens up a flood gate to the brain where it says omg there's actually loads of damage down here!! And that's scary. Because before we didn't know there was anything wrong ...like a repressed memory if you will...and then we just want to keep it repressed. So for me. I'm going to take it in chunks when I get settled...I'm going to take the b12 until it starts to hurt a little then work through that gently and ease off and then do that again. When I was younger I did ballet and I broke my foot and it was a big old floppy thing at the end of my leg. I had to push past the pain in increments ...so I'd have days where I worked it and days where I rested it completely. If I had just tried to go on as normal it wouldn't have developed very well. I suspect that people with pa and nerve damage need proper neurological rehabilitation the same way someone who's had a stroke or their nerve severed and reattached need it. and they may not even know how to do this. But there is a lot of info about other types of nerve issues and recovery from and rehabilitating those. So I'm going to look into those things and what might best help the nerves to reorganise. The rebuilding seems to EB automatic but the reorganising and recoordinating would seem to be something to consciously work on. And maybe a reason why people have so much trouble even with taking the injections is because there isn't that conversation about what to do next. The rehab end of it. I don't know this idea has only jist come to me now so I am going to look it up now. I assume for very bad neeve damage there is a protocol of rehab but maybe more of us have significant nerve damage than we realise until the numbness wears off. And it would seem like just adding the b12 alone well it would be like drinking protein shakes but not learning how to work out in a way that effectively builds muscle...so I think that may be something missing from the equation....I won't look into it now as I am getting the train today and have last minute packing but if I cone across anything I'll pm you. Its all very fascinating.

So I'm thinking if you had a broken leg it would feel aweful. But if you had slowly worn your leg away you moght not notice so much and then fi they attached a new leg on the end suddenly you'd be aware that it was broken. So the nerves seem to start regroqing from the ends towards each other...so if the nerve starts growing it is in a state of injury until it reaches its target...it seems also the nerves myelin sheath is a pain control thing and that new nerves grow without the sheeth ...so when they grow they're raw exposed and injured nerves intil they complete their regrowth. I mean I can imagine regrowing a limb without skin would be worse than having no limb at all... This is a study I am reading now which is about injury not pa but I'm going to assume that just as a victim of a car accident has these issues anyone with damaged nerves will too... I mean I don't know how they're damaged by deficiency I imagine they get worn away slowly rather than snapped and ...I know when I've broken bones it didn't hurt at all at first I guess the body protects you from the damage and pain and then when its healing it hurts like hell. The nerves also get inflamed in order to regenerate so that's gonna hurt. But nessisary. All in all I think its our brains perception of the nerves growing that makes it painful and unpleasant... And maybe in the same way that ghost limb pain can be managed with neurological tricks there are tricks to reprogramming the brain to perceive these new nerves as a good thing. Not just be thinking ouch ouch its a good thing ...but by actively going the neurological excersises shown to help people who've had nerve injury. Anyway here's the artical. intechopen.com/books/periph...

Derz profile image
Derz

I do take B12 methylcobalamin, and I think it is better for me.

Parlay profile image
Parlay

I would suggest making sure your ferritin and HGB are at optimum levels. To use b12 it’s co factors are at optimum. Eye twitching etc can also be low magnesium so gets lots of green leefy veg on board every day or take magnesium threonate or glycinate. Also you should read up on over methylation as that can make you feel really rotten.

You may also like...

Am I deficient in b12

stomach pains, tingling/burning in hands and feet, no appetite body twitches, acne(whiteheads every...

Am I really lacking B12?

was given loading doses and monthly injections. However, symptoms (fatigue, shortness of breath...

Folate deficient but am I b12 deficient?

tearful and my feet are tingling. Can folate make b12 go down? Should I be on injections at 240?...

why am I B12 deficient?

prescribed 3-monthly b12 injections indefinitely, i wanted to know why I need this? After having an...

How much b12 am I meant to be taking

stages of my menopause and have ordered some b12 injections can some one tell me how many 1ml...