Overdose

[Onlyme75]

Hi all 👋

I am a pernicious anaemia suffer and SI

Can you overdose on cyanocobalamin injections.?

If so what are the signs and symptoms?

Thank you

[wedgewood]

Put your mind at rest ! You cannot overdose on any of the various forms of injectable B12 ., which of course includes Cynocobalamin. I don’t have the reference to give you for the scientific paper which applies to this . But rest assured . You cannot overdose on any form of vitaminB12 . It is possible to overdose on some of the B Vitamins, and other vitamins , causing you to become unwell . But please carry on injecting your B12 to keep yourself in good health . You need to inject often to keep all B12 deficiency symptoms at bay . Best wishes .

[Foggyme Administrator]

Onlyme75…

There's a lot of nonsense spouted about vitamin B12 (too much is dangerous, high levels when on injections are dangerous, its addictive, you don’t need it if levels raised following injections etc.). We’ve heard of many GP's and even some consultants who hold these views (if it happens to you ask them to provide the evidence - they won’t be able to because there isn't any).

It’s interesting to note that the potential reported side effects of B12 injections are also the signs and symptoms of B12 deficiency. It is well known and much reported that the symptoms of B12 deficiency often get worse when treatment with B12 injections starts. It is thought that this is a result of the body reacting to the sudden influx of vitamin B12 (it has to 'recalibrate' and adjust to the new improved levels of B12 and it is also thought to be indicative of repair starting to take place). So what some report as side effects can indeed just be part of the process of B12 influx and consequent repair. So if this happens to you, be aware that what you may interpret as side effects are actually part of the 'normal' process once treatment commences, and that this will settle down in due course. (This is entirely different from an anaphylactic reaction, which is very rare and happens very quickly after injection - this would require immediate medical interventions).

Have a read of this…it will provide reassurance:

stichtingb12tekort.nl/engli...

Good luck.

[Onlyme75 in reply to Foggyme]

Thank you soooooo much.I am afraid I have made a huge mistake of telling my GP I SI every other day to now once a week.

She tells me this causes hypermania, which have to admit, my first week jabs given by the my GP practice I was able to walk the stairs normally for the first time ever and was very excited when I saw her next.... But who wouldn't be?

Every time now I see her about any health conditions, she puts it down as I am SI too much! So I started to make it once a month, and am struggling.

I go to see her this Wednesday and am dreading it as I know she will bring it up!!

I am 61 been bleeding ,had polyps removed 2 months ago now bleeding again with horrific mood swings. ...Also terrible stomach problems, but I've had that most of my life.

Unfortunately I was diagnosed with pernicious anaemia 7 years ago and I wasn't treated for it it and I'm left with peripheral neuropathy so I feel that if she continues I will threaten to Sue for damages.!!

Am just going to tell her I've taken her advice and continue by myself every other day.

I have to admit I SI in my arm and I do feel a bit like a pincushion! .

Might do a subcutaneous in-between.

I will print out your link and hand it to her.

I hope you make sense of my reply as I am dyslexic.

[Foggyme Administrator in reply to Onlyme75]

I'm sorry you’ve been having such an awful time Onlyme75.

Your GP is not well informed, is she!

Point her to the British National Formulary (BNF) - it’s the prescribing guide for GP's - she will have a copy on her desk.

Here's a link to the guidelines about Hydroxycobalamin (injectable B12)

bnf.nice.org.uk/drug/hydrox...

It clearly states that for those with neurotically symptoms, injections should be every other day u til no further improvement (for some this is many months and some find they have to stay on this regime permanently to stay well). Here’s the extract:

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

Note that cyanocobalamin is no longer routinely prescribed in the UK but nevertheless the treatment with cyanocobalamin is the same for those neurological symptoms.

Your GP may say that the every other day regime is only for those with macrocytic anaemia but that’s nonsense - neurological symptoms can and do present without macrocytic anaemia being present.

It’s quite clear that if there was a problem with this kind of treatment regime, then it would never be written up as a prescription instruction on the GP's prescribing 'bible'.

I wonder at what point the penny will drop and your GP realise that this is what you should have been prescribed by her. And what she should be prescribing now in view of your ongoing neurological issues. Also - neurotically issues can be caused by many things. Your GP might like to refer you to a neurologist so that any other underlying causes can be ruled out (that would be the usual course of action and you are within your rights to ask for a referral).

Please do not cut down on your injections if it’s making you feel worse. The idea with B12 injections is to have the injections frequently enough to remain well and stop symptoms returning between injections. If you stretch the injections out too far, symptoms will return - as is the case with you. Some here inject B12 every day on a permanent basis - just to stay well. Others need B12 injections much more often that the 8 weekly maintenance regime in the BNF. The bottom line is we're all different and what suits one (in terms of injections frequency) may not suit another. Nobody knows why.

Gastric issues all your life, continued bleeding after polys removal - hope your GP is dealing with these issues appropriately. From what you say, I suspect not.

It doesn’t sound like you’re getting the kind of healthcare that you deserve - and which is your right. Might be a good idea to see a different GP, or change surgeries if this is not possible. Your current GP is not serving you well. And I'm so sorry for that.

Good luck and let us know how you get on x

[Onlyme75 in reply to Foggyme]

I cannot thank you enough x

I've just given myself a injection and I feel I can breath again.

I take Hydroxocobalamin 1 mL and will everyday till I feel better.!

By reducing my intake I have caused so much distress to my family.

I will show my GP your Links, and if she starts I will change GP or even practice!!!

Thank you 🙏

[Foggyme Administrator in reply to Onlyme75]

That’s good news Onlyme75. I bet your family will be relieved.

You might also like to print this and slide across your GP's desk while you’re at it:

stichtingb12tekort.nl/engli...

In case your GP decides to call it Dr Google nonsense, tell her it’s from the respected B12 research institute in the Netherlands - who often work in collaboration with the Pernicious Anaemia Society in the U.K.

There's no such thing as too much vitamin B12! There certainly is such a thing as not enough vitamin B12!

Good luck with your GP and hope you begin to feel better soon.

[fbirder]

People sometimes are worried about cyanocobalamin because it contains a nitrile group, that can convert to cyanide. This is true.

However, the amount of cyanide that can be produced, per injection, is really small. Here's an example.

The compound prunasin is found in many fruits (including prunes) and it also contains a nitrile group. It also produces cyanide on degradation.

Passion fruit contains 285 mg/kg of prunasin. pubs.acs.org/doi/10.1021/jf...

Prunasin has a MW of 295.

Cyanide has a MW of 27

So 285 mg of prunasin can produce (27/295) * 285 = 26 mg of cyanide per kg of passion fruit

One passion fruit weighs 50g and can produce 1.3 mg of cyanide!

Cyanocobalamin has a MW of 1355.

So 1 mg of cyanocobalamin can produce (27/1355) = 0.02 mg of cyanide.

One passion fruit can produce 65 times as much cyanide as a B12 injection.

[helvella in reply to fbirder]

Good description. But not knowing the details, I end up with a question.

I assume all the cyanide from a cyanocobalamin injection is released within the body.

Where does the prunasin release the cyanide?

Does all the prunasin get from gut to bloodstream? Or, if some or all of the cyanide is released in the gut, does the cyanide get into the bloodstream or can it remain within the gut?

[fbirder in reply to helvella]

A good question.

Not all the cyanide from a B12 injection will be released. A lot of it will be passed into the urine, still attached to the B12.

As for prunasin (or the similar chemical, amygdalin), it is true that not all of it will produce cyanide. A lot of it will pass through the gut, behind the tough shell of the seeds that predominantly contain the nitrile compounds.

So passion fruit, apple seeds, almonds, cherry's, etc. may contain substances that can release cyanide - but almost certainly will not.

Something like prune juice, however, may be a different matter. The amygdalin it contains isn't protected by a seed and should be much easier to hydrolyse to form hydrogen cyanide. Only about 10 mL of prune juice can release the same amount of cyanide as a 1 mg dose of cyanocobalamin.

The fact is that there a lot of natural chemicals (which, therefore, must be safe??) with a nitrile group. And there are a lot of medicinal chemicals that also contain one.

[helvella in reply to fbirder]

Thank you - that makes lots of sense.

[pvanderaa]

You can’t overdose but if you are deficient, your symptoms can get worse right after an injection as your nerve damage starts to heal and signals get stronger.

These symptoms show up in the 3-4 days after injection while the brain adjust to the stronger signals. So they are really an illusion.

To identify which symptoms are real and the ones above, and they are similar, start a logbook of food, drink, medication and symptoms.

Reset the logbook to day zero with each injection and compare back to see the sequence and pattern of symptoms that your body has. You can start to anticipate a symptom and eliminate it from your worry list.

If you can also assess a severity score on a daily basis for each symptom, you can monitor progress on a longer scale because in the short term you feel like you’re on a roller coaster ride of highs and lows.

You can also monitor which symptoms disappear and occasionally reappear as healing occurs but B12 injections become insufficient as you feel better and start to do more and more.

For nerve repair, you want high levels >1500 pg/ml which is the top of most tests. Further testing only confuses the Dr who tent to say “you’re normal now” and try to stop injections.

You will need to take folic acid and a daily multivitamin as these can become depleted once you are on injections. In addition to my weekly cyano-B12 self injection, I also supplement with daily B1 and B6 as well as methyl-B12 sublinguals

Stick to a regular regime of medication. Don’t just take them when you feel worse as then it is too late and your body has become deficient again.

[fbirder in reply to pvanderaa]

"For nerve repair, you want high levels >1500 pg/ml"

Reference?

[Foggyme Administrator in reply to pvanderaa]

Just a word of caution about supplementing with vitamin B6 (pyridoxine). This should only be taken if there is a proven B6 deficiency. Long term over-supplementation can cause neuro toxicity (amongst other things), cause symptoms very similar to B12 deficiency, and it has the potential to cause irreversible neurological damage.

ncbi.nlm.nih.gov/books/NBK5...

Onlyme75 , please don’t take vitamin B6 unless you know you need it - and certainly not on a daily basis. Even a low dose B6 supplement can be problematic if you don't actually have a B6 deficiency. It’s also worth noting that a multivitamins always contains vitamin B6 (usually at least the recommended RDA and sometimes much higher - I've seen them at 300% RDA). Taking extra B6 in addition to a multi vitamin will result in 'double' dosing - potentially at ridiculously high levels.

Don’t know if you’ve ever noticed but every so often reports appear in the media about people developing neuropathies or neurological symptoms - from drinking high 'energy' drinks (its caused by the vitamin B6 that these drinks contain often in huge doses)!

[Sammyo23 in reply to Foggyme]

Thank you for mentioning this. I noticed my multivitamin and my b-complex are both filled with the stuff. And I also frequently eat beef liver, which has a lot of it too.

I'm below the point where it apparently causes issues, but I'll stop taking the complex and just keep the multi.

[Foggyme Administrator in reply to Sammyo23]

Pleased the information is useful and well done for picking up on it.

[Onlyme75 in reply to Foggyme]

Hi Foggyme

Yes I am aware of the dangers of B6...thank you for pointing it out though as others that read this might be unaware of its damaging effect.

However I would like your opinion on taking folic acid... I've heard this helps the body to absorb B12 🤷‍♀️

Still feeling great after last night's injection and my body didn't feel like a led weight! I walked about a mile today.... I felt I was walking on springs.

My mood swings have gone! Leaving me feeling a whole lot more positive.

The lack of treatment over the years not only left me with peripheral neuropathy, it also left me with cerebral small vessel disease at age 55 and arthritis which I now have 2 replacement knees. Also Urine incontinent. Unable to hold conversation, emotional. due to brain fogg. Couldn't think. Insomnia, frequent Falls,

I've been in and out of hospital in the last 7 yrs visiting pain specialists, neurologist ,foot specialist ,numerous of MRI scans

And not one thought of taking my B12 blood sample!

It was my sister that told me to get my b12 checked as I was taking PPI lansoprazole for a hiatus hernia, and she thought it could be the cause of my horrendous spasms that gave everyone near me a heart attack as I would scream with the sudden shock and pain. At one point I passed out.

So I asked the new GP to check.... she sat back in her chair with her mouth open as my results were seriously low.

Yet the same GP is giving me all this grief if I'm taking too much B12 🤷‍♀️

I had another test for PA and bingo there we have it.... now they think due to possible Crones disease so undergoing tests for that at the moment.

Xxxxx

[fbirder in reply to Onlyme75]

"However I would like your opinion on taking folic acid... I've heard this helps the body to absorb B12"

Nope, that isn't at all right. Folate doesn't affect absorption of B12 in the slightest. And, even if it did, it would be irrelevant if you're having injections.

If you have PA (and you might, despite testing negative for IF antibodies) then you will have low stomach acid. That will make it more difficult to absorb folate from food. Folate in supplements will be unaffected.

So I always recommend anybody with a B12 deficiency to take 400 mcg of folic acid a day. The NHS recommend that all women of childbearing potential take that amount - so it should be safe.

[Foggyme Administrator in reply to Onlyme75]

Some take a maintenance dose of 400mcg folic acid - some don’t need it. It’s an individual thing and we have seen some in the forum who have ended up over-supplementing and having side effects from 400mcg. Look up the possible side effects of folic acid on the internet and if you do decide to take 400mcg as a maintenance dose, but then start to feel unwell (as some do), you'll be able to determine if you’re perhaps suffering from over-supplementation of folic acid (400mcg doesn’t effect many people badly, but it can happen).

Some of the B12 Facebook groups advise anyone and everyone who injects B12 frequently to take 5mg folic daily. Please don’t do that. This does of folic acid is only required if there’s a proven deficiency, should be prescribed by a GP, and then only for 3-4 months. Over supplementing with folic acid can cause neurological (and other) side effects, will make you feel very unwell, and can cause irreversible neurological damage if over supplementation continues long term. This is all verified by peer reviewed published research, which for some reason Facebook groups choose to ignore!

Good luck.

[Parlay]

There’s so much misinformation coming from Drs that we are supposed to trust it is unbelievable. As everyone has said you can’t overdose on b12 however you can get hypokalaemia. B12 uses potassium so therefore if you don’t get enough potassium in your food it gets lower and lower with each b12 shot which can make you feel absolutely awful.

[fbirder in reply to Parlay]

No. Levels of potassium do not get lower and lower. No, B12 does not 'use potassium'.

If you had macrocytic anaemia caused by a B12 deficiency then your body will put on a spurt of making new red cells when that deficiency is corrected. During this short phase of red cell production your levels of potassium might drop,

But, when this phase is finished, after a few weeks, potassium levels will be restored and will not be affected by further B12 injections.

Taking potassium supplements is not recommended unless advised to do so by a doctor. Too much can be worse than too little,

[Parlay in reply to fbirder]

I apologise. We have seen a rise in A&E as people take on their own care as they have to because of stupid Drs. They all present with hypokalaemia and improve greatly after potassium levels are restored. This must be a placebo effect.

[fbirder in reply to Parlay]

If you're seeing an increase in cases of hypokalaemia it's much, much more likely to be caused by people going on fad diets. Especially low-carb, or 'keto', diets.

[Hedgeree]

Hi Onlyme75,

Thanks for posting this question. I realise it's from over a week ago but I've only just got around to reading it properly.

It's resulted in a lot of interesting and informative responses.

Thanks again.

Best wishes.