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Pernicious Anaemia Society
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Cyanocobalamin or methylcobalamin. what's the difference.

What is the difference between both of these? I have been taking methylcobalamin but I read on this site that a lot of people have been prescribed cyanocobalamin from doctors. I have read that methylcobalamin is far better can anybody explain the difference to me in a simple way?

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I'm not an expert on this subject, so hopefully someone else can do a better job of explaining. The simplest explanation for the difference that I can come up with is to think of a picture in a picture frame. In this case cobalamin is the picture and you have three different choices of frames: cyano, hydroxo, or methyl. Any of those frames will hold the picture. They do the job equally well.

When methylcobalamin came onto the market it was thought that it was superior because it is a form that matches what the body creates when B12 is absorbed normally. The reason this was thought to be better is because it was thought that the body would need to do less work to process the B12 into a useable form. It turns out that the body has to go through all of the exact same steps regardless of which form is used. So they are all really pretty much equal. However, many people find they do better with one version over another, and trial and error is the only real way to figure out which version will work best for you.

Hydroxocobalamin is the form most commonly prescribed in the UK while cyanocobalamin is the form most often prescribed in the US. Since methylcobalamin is new, it is not commonly prescribed anywhere yet.

One caveat on the cyanocobalamin form: This form gets its name from the fact that the cobalamin is bound to a cyanide molecule. Because cobalamin inactivates cyanide, this form is generally harmless. The exceptions are that anyone who is commonly exposed (through factory work or from smoking, etc) to higher than average levels of cyanide should avoid this form. And anyone with a family history of Leber's Optic disease should avoid it also.

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Methylcobalamin is less stable, more expensive and, in injection form, much harder to source.

This paper explains why it is no better than cyanocobalamin and may not be as good as hydroxocobalamin - ncbi.nlm.nih.gov/pubmed/258...

Some people worry about cyanocobalamin producing cyanide. The amount produced is less than that in one apple pip.

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Hi toph I don't know the efficacy of one over another all I can say is that I have been having cyanocobamalin injections for over 45 years because at the time it was the only "type" available and it's worked for me.

I was 30 years of age at the time and was given two years to live - unless I either ate raw liver three times a day or cyano B12 every four weeks for the rest of my life. I choese the injections and I'm still "clivealive" at 75.

Incidentally cyano in the injection of choice in the U.S.A.

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Hello Toph,

I am taking methylcobalamin sublingual 1000 iu. This is absorbed under the tongue and goes straight into the body. What you don't need the body will get rid of when you spend a penny so you cannot overdose. The body will take what it needs.

I did try the cheaper version Cyanocobalamin 1000iu also sublingual (you can get 3 months supply of Cyanocolbalamin for the same price as 1 months supply of methylcolbalamin). But this did not have the same effect as Methylcolbalamin for me.

Cyanocobalamin has a tiny amount if cyanide in it but not enough to harm you. It is the man made form of b12 so the body has to convert it into b12 so may not be as effective as methylcobalamin. It's your choice and what you can afford.

My Gp confirmed I was low in b12 but did not offer any help. So I started taking it myself and it has made a huge difference.

I researched this myself before taking it. Different things work for different people.

I hope this helps.

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Dr Wilhelmina Rietsema explains the difference well :

"There are two active forms of the B12 enzyme in the human cell. First, Methylcobalamin acts as a co-enzyme for the conversion of homocysteine to methionine. Methionine then acts as a methyl-donor to a great number of reactions that need a methyl group, including the synthesis of myelin, serotonin, dopamine, noradrenalin, DNA and phospholipids.

Second, Adenosylcobalamin is a co-enzyme for the conversion of L-methylmalonyl-CoA into succinyl-CoA which feeds into the citric acid cycle.

Is it important which form is used in treatment? In most people, it does not matter. They can convert cyano- and hydroxo-cobalamin into the active forms needed. However, I have recently reported a case in which it did matter. The severe vitamin B12 deficiency, including dementia and psychosis, responded to treatment with high dose oral methylcobalamin, but not to equally high dose oral hydroxocobalamin. [1] "

1. Rietsema WJ. Unexpected Recovery of Moderate Cognitive Impairment on Treatment with Oral Methylcobalamin. Journal of the American Geriatrics Society 2014;62(8):1611-12 doi: 10.1111/jgs.12966[published Online First: Epub Date]|.

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I understood that hydroxocobalamin is retained in the body longer than cyanocobalamin so hence the 12 week injection interval rather than every month. This would make sense as the NHS would see the cost benefit from using hydroxo and the USA medics would see the reduced income from less regular treatment visits.

I realise this is a cynical reasoning but the American healthcare service does seem to be skewed to profit for the practitioners rather than patent benefit.

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You are probably right kcbrecks about the US using Cyanocobalamin for financial reasons and the 3 month one Hydroxocobalamin is widely used in the UK and Ireland where I live BUT I'm allergic to the slow release formula in the 3 month one and HAVE to get the monthly one (every 3 weeks). I would really love if I could get 6 injections a year (every 2 months) instead of one every 3 weeks!! They are not nice injections! lol!!

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That's literally a pain Bengie. Do you self inject or have to go visit the practice nurse?

I have found doing it myself is so much less hassle than having to make an appointment, for when it suits them, rather than fill up a syringe, drop the trousers and do the job in the quiet of my own bedroom. It takes just a few minutes and isn't painful with a nice new sharp needle. I have been doing this for the past couple of years after the initial booster series, in fact the last booster was when the practice nurse coached me through the procedure. My daughter has been doing this for the past 15 years as she found she was in serious trouble with desperately needing the injection and having difficulty getting an appointment which fitted in with her job and her family.

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Kcbrecks, I'm a wuse I'm afraid, so I'd never try to SI. I have to get my injection in the butt as I don't have enough muscle in my arm. I don't believe I could see back that far anyway!! lol!! I'm 68!! No problem getting appointments with the nurses who are quite willing to give me injections whenever I need them for the last 27 years. After all I'm not looking for morphine??? (but I don't like deciding myself, and used to be sparing them??). It's def a nuisance when going on holidays. I've never had side effects till two months ago, not that I was aware of anyway as I was very ignorant about what side affects I could get or might even have. In march I went into my doctor and said 'I'm not sick" but... I have noticeable memory loss, Poor concentration, Pins & Needles, Nightmares, Coma type sleep on waking, Heart Palpitations, Brain Fog, Shortness of Breath, Weakness down right side leg and hand and frozen left leg, Tired after 8 to 10 hours sleep, Breathlessness, Itchy head dry skin, Headaches. She didn't know what was wrong so I suggested could it be my PA? She didn't know but rang two days later to come in for 2 injections a week. I came home and Googled PA for the first time and found this site and I am so grateful to the knowledge I have acquired here from such helpful people. I've been getting injections twice a week for the last month and feel much better but as it's up to myself now I don't know if I should continue. I decided last week to only get one injection and going for another on Tues but I still have a very cold (almost frozen) left leg but only when I'm sitting for a while watching TV with my legs elevated? Still have pins & needles and itchy skin but I'm not sure if the leg and skin have anything to do with PA? I'd be grateful for any advice. I've just received in the post Martyn Hooper's Book "What you need to know about PA etc", Thank you for reading this. Jill

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Thanks for the giggle Bengie, I had mental pictures of someone reaching round and trying to stick themselves bending over and peering over their shoulder into a mirror with a loaded syringe pointing at their derriere. :-)

When you do it yourself you use the muscle of your thigh. I have to admit there have been times when I got ready and pointed the needle at my leg and had to stop to steady the hand. But it really is very easy and only takes a few minutes for the whole thing.

I have been having sharp pains in my toes and fingers every evening this past few weeks so I decided to see what soaking them in a bowl of hot water would do, and for the past few days it has been very effective. About 10:30 I sit with soaking toes whilst watching telly a couple of Ibuprofen at bed time and the problem has gone. The pessimist in me says it won't last, so I will do it as long as it does. All I need now is a crimson quilted jacket and hat with a tassel and I will be like you see in victorian pictures.

My wife was trained as a nurse before we were married and is really pissed off I can do it myself as she has had visions of doing it for me. No chance.

I must be luckier than you though as I put on a load of weight through my 60's and now coming up to 73 I don't fancy giving up the last sensual pleasure in life - eating. I do the cooking and if I do say it, 'as shouldn't, I am pretty good at it. So there is plenty of muscle to use.

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Thanks Kcbrecks for the return giggle of your Victorian picture and for scaring the shxt out of me re how easy it is to inject yourself!! lol!! Seriously though can you make a mistake injecting into the thigh please? I might ask the nurse and see if I can be brave. As one gets older do side effects appear more regularly as I seem to be only getting them recently?

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The 'side effects' look like a catalogue of the possible effects of the deficiency. I have no idea if the are exagerated as one ages as I have only had the condition for 3 years. It is probably as a result of large doses on Omeprazole and Nexium for GERD which was then corrected nearly 8 years ago by a fundoplication which effective shuts off the area of the stomach which manufactures the intrinsic factor which allows the use of B12. Ultimately the B12 store depletes, taking about 5 years, so PA is inevitable.

Injecting into the fleshy part of the thigh, to the right or left of the centre line respectively is safe and the technique involves inserting the needle with the loaded syringe then gently trying to pull the plunger back to make sure you are not into a blood vessel. If not then gentle pressure is applied and the material flows in readily and easily. Pull the needle out and dispose of it in the yellow medical waste bucket the local authority provides. I suspect there is enough room in the bucket for about 5 years of use. They come collect it when it is full. It is and offence, I understand, to dispose of the used equipment in any other way. It feels strange at first to be pointing the needle at you leg muscle and then to insert it but even stranger when there is very little sensation when doing it. There may be a slight sting when actually injecting the material but a quick rub of the leg soon sorts that out afterwards.

No matter how easy it is to get an appointment at the surgery it is certainly much more convenient to do it yourself and you feel much more in control of you condition.

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Kcbrecks, I asked my doctor yesterday to show me how to SI into the thigh which she did. It was the first time I'd actually seen the size of the needle going in and it seemed to have to go in the full way. I go for another injection on Friday to the nurse as I didn't want to go back to the doctor. I'm hoping I can do the preparation but allow the nurse to actually give me the injection this time as I was too shocked the last time to remember how it was done. As you know I used to get it in the butt!! Next week I HOPE to do it myself but am not sure I can 'stab' myself??

I think my symptoms are now better so can you tell me how often I should get injections from now on? I've been getting 2 a week for the last 5 weeks. I get no help from my doctor and don't like making that decision myself? I normally get one every three weeks but it was only recently that I experienced lots of side effects and thought I was getting dementia (to name just one) but that seems to be okay now apart from age related!! Before starting 2 injections a week my B12 was 330 and I know I usually need to be around 800 to feel right. My last test after an injection three days before was reading 1200 but I know now that this is a false reading being too near to an injection. Thank you for your time. Jill

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I can appreciate your anxiety about doing the deed yourself. Personally I think the advantage of being able to give yourself a vital injection as and when it is not only needed but also convenient for you is extremely valuable. My next one is a week today according to the schedule so I have a few days to get mentally prepared. When it comes to it the sliding in of the needle doesn't hurt, it is so very fine and sharp - that was a real surprise to me when I first first did it. The first time I did it on my own I will admit to getting a bit of a shake in the hand, so I just paused and that went away and it was no problem. It is such a little thing when you actually do it and can make such a tremendous difference to your life.

My daughter has been doing it for the past 15 years now and our schedules are more or less in sync. That happened when I went to Florida with them 2 years ago and we both injected before we went as both of us would need it whilst we were there - not a good idea to be carrying needles, drugs and syringes to the USA we thought.

We are going to Canada together at the end of July but that should be in the middle of our sequence so will be ok. But if we thought it prudent we could always have a fill up before we went, which we would have difficulty getting past the surgery.

My sister-in-law has to be the biggest wuuss in the world though. She doesn't like injections, well who really does, and she has to have a particular nurse do it and they choose a time when there aren't going to be many other patients around as she tends to scream and shout as it happens. She is 84 so I reckon she needs someone to give her a good smacking when she carries on like that. She actually refused the injections when she was diagnosed about 10 years ago, so my wife, her younger sister, said she wasn't going to her funeral as she doesn't approve of suicide and not to be so silly.

There is no way I can comment on your injection schedule as I am just an interested and curious sufferer. The internet does mean you don't have to make so many trips to the library, but of course a little learning can be a dangerous thing.

Some people can self inject Jill and some people can't, it is nothing to do with courage or lack of it. There are many things I won't do which others do willingly and I have now real explanation as to why, that is just how it is. Just think of the benefits to you of being in control of your treatment, it might be the key to it.

Stiffen the sinews, gird up the loins, cry havoc for England and St George, have at it. Best foot forward, and all that rubbish.

Best of luck tomorrow Jill.

Keith...

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It's 3.40p.m. and I'm falling asleep but didn't wake up till 9.40a.m. due to an asthma attack at 1.30am. I NEVER fall asleep during the day!! Thank you Keith for your encouragement in your reply. I'm not afraid of injections I just never saw them coming till last Tuesday! lol! I'm going to Australia for a month in November and am wondering already if I can bring needles in my luggage? I'll let you know how tomorrow goes. Perhaps your sister-in-law should try a different nurse as there is one here that just can't give the B12 injection without being in excruciating pain during and after. Just a thought? Jill

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My sister-in-law is just insane, she doesn't like anything alarming, mind you she hasn't a clue what it is like the see her driving from outside the car. She will only allow the one nurse anywhere near her with a syringe, I did try offering to do it for her but she just went to bed for an hour at the very thought. I am convinced she is somewhat autustic and has got away with it for years. No, I am wrong, she is mad, clinically. It takes her 3 hours to have a bath, lining everything up in the right place first, then the ritual of filling the tub followed by the exact method of washing then drying and cleaning the tub till there is no possibility of any microbes and finally removing all of the collection of oils and unguents to their proper place in their appointed cupboard on on their shelf before finally exiting the bathroom. She doesn't have one often, usually shifts the muck around with a flannel and douses with toilet water. I could go on for ages about the vagaries of my wife and her sisters, one of who, is now arguing with the bearded sky fairy in a nightie, if such exists. She was even crazier. I think I married the only sane one in the family, but she is exhibiting some odd traits lately.

Best of luck with the administration, You can always get your quack to prepare the relevent letters and notes to enable you to take your kit with you. You might need a small yellow and red disposal box as well for the used ones, unless you can inject before getting on the plane so you will only have the ampoules with you and get the kit in Australia.

Best of luck tomorrow.

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I'm on a 'high' today as the nurse told me to inject myself TODAY and I did it. She gave me injections, needles, wipes and a 'Sharpak 18' to dispose needles and told me I could be better than any nurses at it???? Oh, and she gave me 'Water for injections' to practice taking 1ml out of it and told me to inject into an orange. I'll never look at oranges in the same way ever again!!! I didn't hurt myself either.

Will have another injection next Tues with the nurse watching then I'm on my own after that. Oh the relief of not having to make appointments usually every three weeks and sometimes wait an hour to be seen AND for the rest of my life.

Thank you, and everyone else here for giving me the encouragement in the first place.

p.s. I can never know when your serious, joking or 'pulling my leg'. Good luck with the family. lol!

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That's wonderful Jill, freedom will be yours and control of your disease. After next Tuesday you will be looking forward to 3 weeks later to prove to yourself you can do it again. And you can quietly hug yourself when you look at other people knowing there aren't many of them who can do what you can, or even have to. I always make sure I am on my own and unlikely to be disturbed so I can concentrate fully on what I am doing - phones switched off and so on. I look forward to the next bulletin.

Now about the family tales. I tried to write them in a slightly jokey style as I thought they might amuse you and you seemed to need a bit of lightness. They are all true with no exaggeration. The third of the trio of sisters, the middle one was even crazier and was a manic depressive alcoholic chain smoker. She divorced her first husband because she said he was a peeping tom and watched her undressing through the keyhole of the locked bathroom door. She burned the inside of her nose through smoking whilst on oxygen when she lay dying with lung cancer. Mind you she was great fun to know. When between husbands she barred all of her belongings around in carrier bags, up to 6 of them and made a room untidy when she entered it. We moved once and didn't tell her until the removal van was due, she wasn't coming with us otherwise I would have slit her throat.

My family aren't half so interesting other than my dad spent several months in a psychiatric hospital and reckoned he was the only one who knew they were sane as they had let him out.

Best of luck next Tuesday. Not that you will need it.

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I cannot comment on the level of scientific evidence Eaoz but it does seem to be appropriate for most people. There are some of the ones I know who feel 10 weeks is better and my wife thinks that is the case for me, so I will go along with her as she notices the changes in mood and activity better than I do from inside it. I have a very good friend who was a local GP, now long retired. He says he took it as a guideline but injected his patients as he saw their need from being symptomatic even down to every week if necessary. He practised in an era when the local GP had a bit more freedom than they seem to have these days and probably slightly smaller numbers of patients.

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I put it down to the training they get, it is designed to remove all original thought. Occasionally you come across one who still thinks for himself but most of them prefer to just follow the book as then they can't be sued.

3 very wrong diagnoses for me and one for my daughter have convinced me to research everything they come up with thoroughly. There is one at the practice who I wouldn't let anyway near the daughters cat let alone me.

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