Doc finally says every 2 weeks then months. Should I start self-injecting regardless?

Hi all,

Just wondered what people’s opinions are on planning to self-inject regardless of the doctor’s approval to start the usual routine (once every fortnight for a number of weeks followed by every 2 months).

Needless to say I am nervous about self-injecting but am also serious about giving B12 a go and I am already prepared for the probability every 2 weeks won’t be enough. I have been ill for 11 -12 years now and I believe I have quite a bit of neurological damage so I am almost feeling a sense of desperation/urgency to crack on with the bi-daily routine.

Is it advisable to just start regardless of the doctor’s ‘advice’ and if so should I inform her of my intentions?

I have also noticed that they have a very thick needle for B12 but there are different types of needle to buy and that people recommend/prefer.

Is there a specific type I should be using? And also, does it matter what B12 ampoules I buy? I am assuming I need Hydrocobalamin (what the doctor has prescribed) but I see it in 1mg form and 2mg and am unsure which to get. Am I correct in saying the 2mg ampoules have the same amount but and diluted to make it easier to inject?

I keep reading how much it hurts to inject, is this the case?

I have found a link to a German Amazon site that sells B12, are these the correct type?

amazon.de/gp/product/B00AMF...

Or should I just go with what the doctor says for awhile regardless of the fact I feel I will need to follow a similar routine to many of you on here?

Many thanks

10 Replies

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  • The ampoules you have found are hydroxocobalamin ampoules - though I can't vouch for the site though would imagine it should be reputable.

    You can't overdose on B12 and there are no known downsides from having high B12 levels so on a personal level I don't see that you have anything to loose if you want to try supplementing what you are receiving by self-injection, though you might want to experiment with different types of cobalamin given that you seem to have a lot of neurological problems and issues with pain etc. Many people find that they respond better to methylcobalamin in respect to neurological symptoms - but that doesn't apply to everyone.

    In terms of how much B12 ampoules contain you would need to look at the concentration information - I don't think that 2mg is necessarily a lower concentration.

    Don't know if you have looked into other formats for delivering B12 - although I do inject occasionally I do most of my supplementation in the form of nasal sprays which do work very well for me. I use both methylcobalamin and hydroxocobalamin sprays as methyl seems to work best at making sure I have feeling in my left foot and hydroxo- works best at ensuring that I don't turn into a bad-tempered and suicidal grizzly bear.

    You can inject intramuscular or sub-cutaneous - intramuscular is more complex and you would certainly need to get someone to show you how to do it properly - it would also involve using two different needles - a broad needle to get the B12 from ampoule to syringe and a finer needle for the actual injection - that is down to how quickly you are transferring the liquid.

    If injecting sub-cutaenously you can use insulin needles - so no mucking around with changing needles - but the downside is that the B12 levels tend to not get so high and may drop off quicker.

    It is advisable to make sure you keep your folate levels high.

    In terms of letting your GP know - yes I think that would be appropriate - and may be agree to come to some understanding on follow up blood tests as B12 deficiency doesn't rule out other conditions (unfortunately the opposite can often be true - ie multiple problems together - so good to have checks that something else isn't going on at the same time.

    I source my needles from medisave

    medisave.co.uk/

    nasal sprays from

    detoxpeople.eu/

    and B12 ampoules from mycare.de - another common choice is goldpharma

  • Hi

    Re:"

    Or should I just go with what the doctor says for awhile regardless of the fact I feel I will need to follow a similar routine to many of you on here?", I'd first go with what has been prescribed, see how you go and remember it takes a while for some to feel any benefit of the B12 injections. You can then in the future decide it did this and that for me (keeping a log will help) and now I'm getting less B12, or this or that is coming back or not etc. Why are you not getting B12 with the loading? You never know you may be fine with what is prescribed and if that is not the case your GP may be willing to help you further, you never know!

    Also staying under GP's support is needed for monitoring of other problems that can arise once B12 treatment has started such as folate def and iron def etc.

    In time you can tell, and then maybe ask to be taught how to self inject, which again will be so much better if that is with GP's support.

    The option to self treat is all ways there, no need to jump the gun just jet so to speak is what I think. Never forget there are many that do fine on the standard B12 treatment, they just do not visit forums like this as there is no need for them to look further.

    The 2ml solution of B12 is the same strength as the 1 ml, I find 2 ml nicer as it is less thick and therefore stings less; its also easier to load a syringe and inject slowly. Needle size depends on how you would inject subcutain or IM.

    I hope this helps,

    Kind regards,

    Marre.

  • The needle that works well for me and is pretty painless is the BD 1ml insulin syringe U-100 (www.bd.com) for a reference. The needle is 25G x 1 inch (0.5 mm x 25 mm long).

    I inject into the buttocks (upper outside quadrant). Right side on Sunday and left side on Wednesday. I inject 0.5 ml of cyano-B12 each time so I'm injecting quite a lot.

    My technique uses a penny coin. After I prepare my syringe with the dosage of B12, I press and hold the penny To the injection site for the count of 10. This leaves a nice indented ring in the skin which remains while I use an alcohol swab to clean the skin in and around the ring. Using a full length mirror I aim the needle at the ring.

    The first time I tried to inject was the hardest. I used two needles. One to inject into the rubber stopper or the vial ( no ampoules here in the USA) to draw the B12 into the syringe and a brand new needle to inject into the skin.

    Because the new needle was very sharp, it went in with no pain at all. I was surprised how easy it was. This gave me a good start and I built up confidence from there.

    Now I use the same needle for both and although it is slightly blunted by the time it gets to my skin it is painless unless I hit a blood vessel or a nerve. If I feel pain I reposition the needle about 2 mm to one side but still within the ring.

    If I get pain, it is typically at the previous injection site as it appears to react to the new B12 in the blood stream.

    Hope these ideas help you get started. There are also several YouTube videos about how to self inject into the thigh or buttocks.

  • I diagnosed and treated myself, so I'll add a few things:

    1. Treating yourself can be risky. I think your best bet, is to find a good doctor, who really knows about b12. But I'm sure you already know that:)

    2. It sounds like you have neurological damage, so you should be careful with supplementing b9 (folate or folic acid). This is what Wikipedia says about it:

    "If someone is deficient in vitamin B12 and folic acid, the vitamin B12 deficiency must be treated first to avoid precipitating subacute combined degeneration of the cord (giving folic acid first will turn the remaining B12 into methylcobalamin which will not be able to participate in fatty acid metabolism).

    en.wikipedia.org/wiki/Subac...

    I read about this in some other places too, but I don't remember where. Also, if you do have SCD, you need to be careful with foods that are fortified with b9. I don't know where you are, but I know they do that a lot in the US.

    3. I'm living in a foreign country, where I don't know the health system or the language very well. And after LOTS of research, I was sure I was b12 deficient because of my vegetartian diet. And I had subacute combined degeneration of the spinal cord and megaloblastic anemia. And I didn't want to waste any more time, so I decided to risk it, and treat myself. I talked to my dad (a retired pharmacist) and stepmom (she's given b12 shots before), before I started the injections. So I at least had someone to talk it over with.

    4. If you jab the needle in quickly, and push the b12 in very slowly, it may not hurt at all. And it's much easier to push it in slowly with a thin syringe. I used a big syringe the first time, and it hurt a little because I couldn't push it in slow enough. But the thin syringes weren't a problem. I did most of mine IM, in my thighs. I tried SC, but had trouble with the needle popping out.

    5. I gave myself five 1000 mcg loading dose injections of hydroxocobalamin (they also had some b1 and b6, that I don't think I needed), every 3rd or 4th day. I originally planned to do at least 6 (but probably more), every 2nd day. But I didn't really like sticking myself with needles. I knew the 5 injections wasn't enough, so I was going to start over, and try doing them every other day. But I did some research about taking it orally instead, so I switched to 1000 mcg orally, once every day. And I've been doing that for just over 4 months now, and it's worked really well. My SCD symptoms are about 95% gone. I think my anemia is all better. I had lost a lot of strength, but it's all back now, and then some. And I had a bunch of other symptoms that went away too. Some of them I had my whole life, and just thought they were normal. So I've probably always had low b12. I don't know if it would have worked as well, if I had skipped the injections, and just taken it orally from the start. But I think you retain about 150 mcg from each injection. But only about 16 mcg from each oral capsule. So I'm pretty sure it helped to start with the injections.

    6. I haven't tried methylcobalamin. But my understanding is, your body won't regulate it, so you have to be really careful with the dosage. But I think your body will regulate hydroxocobalamin. Don't take my word for it though, since I'm not a doctor:)

    Anyway, I hope that helps. And good luck!

  • One more thing. My biggest concern with doing it myself, was what would happen if I had a bad reaction to one of the injections. I think it's unlikely, but still possible, so you should know what to do, just in case.

  • What would you do if you had a bad reaction?

  • Hi all, thanks for your replies as always!!!

    I am getting weekly injections from my doc for the next 10 weeks of hydro. My 2nd today.

    I have also bought some Jallow lozenges 5mg each which I've decided to take 1 per day to help with my injections.

    Uncomfortably numb, I am concerned that you say to be careful about my folate. My folate levels are actually high (above normal) levels. Does this mean I am at risk for further health problems if it doesn't react well with my b12? Will it effect my treatment and should I be concerned? I'd hate to make myself worse!!!

    Does anyone else know about the high folate b12 links?

    Aside from that, do you think I am starting off correctly?

    Many thanks

  • Hi Qunk,

    That is brilliant news, re :"I am getting weekly injections from my doc for the next 10 weeks of hydro"!

    Wait and see what happens with the high folate, it may well now be used with the extra B12. Again serum folate test does not say how much folate is actually taken up in your body to the form it needs, for that to happen folate needs B12, so it all may change now you have injections.

    Have a read of this it will explain more see:

    emedicine.medscape.com/arti...

    Kind regards,

    Marre.

  • Hi,

    I had a B12 infusion (high dosage of B12 on a drip for 30 mins) due to my neurological problems. I had legs numbness constantly that I was always limping. My B12 took ages to arrive in the post, so I wasn't able to carry on injecting straight after the infusion which would have really helped stabalise everything.

    The day of my infusuion, I was able to feel the material on my skin again, and see everything so clearly. I hadnt realised how numb I must have been or how blurred I was seeing things, but it worked amazingly for me.

    Then, after 4 days I went back to normal as I didnt have my shots to keep me going. I am now having 1 injection per day (I am on day 3) but I still get pins and needles and joint pain feeling. It has taken away the extreme numbness, but I think I'd need to inject 2-3 times a day initially to make much of a different.

    I am rationing my B12 as the supplier is not longer operating, so I need to track down a new source. If you have neurological issues like me, then you definately need to inject every day to begin with, then you can slowly do every other day and work out how often you need them. Your recommended dosage sounds pointless as you wont notice any change what so ever.

    The drs always have their opinions, but you know your own body. You cannot overdose on b12, so it wont cause you any harm injecting every day, even if you just try it for 1 week.

    I have spoken to a couple drs who actually have PA and they told me it took them 1 year to feel better injecting everyday having neurological problems.

    I think the infusion would really help you if you could get one, then carry on with injections... That way you would feel better much quicker.

    But if you just have to stick with injections, that's fine but I'd suggest do more frequently!

    Good luck xXx

  • The Amazon stuff is hydroxycobalamin, which is what the NHS uses. It's 1mg in 1ml. If I decide to go down the self-injection route then this is likely to be the stuff I go for. Thanks for the find.

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