I've been self injecting with methylcobalamin(in thigh) and feel worse than before. Symptoms are worse and I have now lost my appetite. Is this normal? Am I doing something wrong? Feeling desperate and don't know what to do
Feeling worse after self injecting - Pernicious Anaemi...
Feeling worse after self injecting
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cefjarth
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This is your first post, Cefjarth. Why did you believe you had b12 deficiency and start injecting in the first place?
B12 level was 218. Nhs wouldn't treat me as not under 200. Neurological symptoms: tinnitus, tingling, sore feet, lower backache, depressed, anxious, couldn't sleep, etc etc. Saw my ex family GP who treated me with neurobion but because he is 2hrs away, decided to self inject after seeing private doc recommended by PA, who gave me needles, etc. Improved when treated by my ex doc, and first few self injects went well but now feel pretty awful.
Neurobion is a multivit which is usually used as a preventative measure rather than a treatment. If you improved on that yet are getting worse specifically on b12 then I'd definitely contact your GP again.
You can't overdose on b12 and it has very slight side-effects and for most people it has none, so it can't be that which is making you worse.
If you have been taking the b12 any further blood tests should enable better analysis of samples with regard to any other deficiencies.
I'd definitely go back to my GP if I were in your shoes.
I know I can't overdose on b12 as all b's are water soluble but I find it strange that I feel worse. I'm perhaps not managing to inject into muscle?..
I think that question would probably be best directed to the person who advised you on the self injecting.
Some people prefer subcut injections to intramuscular, others vice versa. However I would think no matter how much of an injection is getting into the actual muscle, you are getting a whole lot more b12 into your body than via a multivit - which is why I suggest going back to your GP for further testing.
It could be that you are deficient in b6 but taking b6 without knowing what is going on can have adverse side effects.
Neurobion has 1mg each of B1, 5 and 12. 3mg in total
I'm not quite seeing your point on this?
Only 1% of b12 is absorbed through oral medications and that is only an estimate based on the response in serum levels.
The indicators are, that if b12 deficiency was the problem, is that you should have done much better on the injection (because it bypasses the oral methods of absorption) So if you haven't then maybe something else is responsible for your symptoms?
Perhaps you are one of people for whom methyl just doesn't work. It might be worth trying a different form of B12 e.g. hydroxocobalamin or taking adenosylcobalamin (dibencozide) as well as the methyl. Has your folate level been tested?
That was my train of thought since the cyanocobalamin seemed to work. No my folate hasn't been tested! Thanks engles, will look into that
We're all really fishing in the dark with the different forms of B12. I've never been able to find any meaningful research on the effectiveness of the various forms and why some people appear to fare better on one particular form. I suspect that those who don't do well on methyl lack the ability to convert methyl to adenosyl but can convert hydroxo or cyano to both methyl and adenosyl although I've never seen any research to support that.
About 20 odd years ago my then GP gave me an IMI of adenosyl and within minutes it felt like a light had been switched on in my brain. I know it's his preferred form of b12 but not available in UK as 1 in 1000(or is it 100000?!) can't remember! Have an anaphylactic reaction to it. According to him it's far superior.
Whoa!
Please don't suggest to anyone that adeno should be injected IT SHOULD NOT. It is actually dangerous to inject it and you will, today, only ever find it in tablet form.
I cannot repeat this strongly enough - NEVER INJECT ADENO.
Ok,was not suggesting anyone should inject, just what I have experienced
in reply to Poppet11
Why? There are others that inject adenosyl in Netherland, apparently , info from dutch B12 organisation (I am dutch so was member of their forum, they helped me a lot!) see:
pernicious-anaemia-society....
Not that I personally would recommend people try it , but why are you saying that poppet?
Poppet11 in reply to
Because it's not stable.
Even from Wiki
en.wikipedia.org/wiki/Cobam...
It's not even available in injectible form. So I don't know where your Dutch people are getting it from?
The only person I know who injected, and he is very, very knowledgeable about such things, said he would never, ever do it again.
I've seen other warnings against injecting it also.
in reply to Poppet11
Its in the link I supplied and below in an other reply I've given.
Google translate isn't happy with the Dutch site .... and I've just managed to knock out the link...
The link I've got says ampoules, powder, nasal sprays? and capsules? - I'm not sure about the last two. But it says 50 -1500mcg in weight - which would indicate to me that the product is not injectible but oral (or nasal)
... and then it froze my screen...I'm not trying again. My fault the antivirus is updating and I asked too much of my laptop.
Are you talking about Arnika Apotheke? I've heard of a number of people buying injectable adenosyl from there and what's going to be in a ampoule if not an injectable liquid?
Hi Cefjarth. Have you tried injecting elsewhere? Hip or arm? I have been told by several health providers that "It just does not work in the thigh". I did use the thigh and for me it did not work (hydroxocobalamin) so reverted to the arm as site of choice.
Intramuscular or subcutaneous? I've been doing intramuscular hydroxo injections in my thighs for 5 years and they work fine for me.
What length needle do u use engels?
1.25 inch\32mm 23g and I have very little subcutaneous tissue on my thighs so the needle goes deep into the muscle.
Mine are 0.5 x 16mm, 25g x 5/8". I wonder if I'm getting to muscle?
Those are intended for subcutaneous injection so it's quite likely that you are not. Pinch the skin at the injection site between thumb and first finger, measure the amount of pinched skin and divide that by two. That will tell you how much tissue you need to get through before you hit muscle. For example, if there is one inch of skin between thumb and first finger you have half an inch of tissue before getting to the muscle.
Thx engles. No wonder I don't feel better! You have been most helpful. Do u experience any pain or discomfort?
The only discomfort is that the hydroxo stings a bit when injected. I minimise that by making sure it is at room temperature before injecting, injecting quite slowly and by using 1mg/2ml solutions that I buy from Germany rather than the 1mg/1ml that are usually used in the UK. Same amount of hydroxo but twice as much liquid and half the sting.
Intramuscular. Many of PAS members use thigh as site and works well for them. I have a sensitivity to hydroxocobalamin and have a reaction with every shot(that works). I use 1inch 23g blue cap(for IM arm).
I'm definitely using wrong needles! Going back to my original doc tmrw so I can get his right once and for all! Thx for your info kay
If you still have a plentiful supply of syringes you can purchase needles only.(once you know the size you want) on medisave co uk for around 2.80 +p&p for 100.Good luck hope you get sorted!
I thought neurobion has B1 B6 and B12 as cyanocobalamin in it (its what comes up on google search for neurobion, see: merck.pk/en/pharmaceutical_... ).
If you did well on that one then go back to it, I believe its used in Belgium as injections, also avail as
tablets I see. Or perhaps create a replicated version, B12 injection (cyanocobalamin or hydroxocobalamin) with multi B vit tabs. I hope the reply does not duplicate itself 6 times either...
In principle if you are not doing well on current treatment then it would be wise to go to GP, have blood test testing serum folate and ferritin (-iron storage) and thyroid function, as it is not uncommon to become folate/ iron def and or have thyroid problem once B12 treatment has started.
cefjarth in reply to
Thx for info marre
in reply to cefjarth
You can by injectable Adenosylcobalamin from germany , from: arnika-apo.de/Info pasted from:
pernicious-anaemia-society....
2014 contact Katrina:
manufaktur@arnika-apo.de
Bestellhotline: 089 - 452 468 468 (plus country code for Germany)
Bestellfax: 089 - 452 468 469
Adenosylcobalamin als Ampullen zu 1mg / 10x1ml
Methylcobalamin als Ampullen zu 1mg /10x1ml
Can be kept at room temperature, so can be send easily with DHL.
They make them themselves.
To order: send an email with the order, name and full address to:
versand@arnika-apo.de .
You then get an email with info how to pay, and after you have paid you'll receive them around a week later (EU)
Some just use methyl, others methyl and adenosyl both. With good results.
They are only 1 ml and very easy to inject.
They also have methyl as 10mg and adenosyl as 5mg.
cefjarth in reply to
Thx marre, I got methyl from Arnika - very efficient
Gambit62Administrator
Sounds like there is probably something else going on, so best thing is probably to follow up with GP and look at some other possibilities - B9, thyroid.
B12 seems to be a very individual problem and there really isn't a one size fits all solution, and people respond differently to different dosages and different forms and different formats of B12 - and it is sometimes a case of trying things until you figure out what works for you - regardless of what might work miracles for others.
You can't overdose on B12 but you can overdose on some of the other B vitamins - eg B6 - neurological symptoms which generally go away after over-supplementation stops though there have been some documented cases where the damage seems to have been permanent - the problem dosage level seems to be around 100mg per day over a few months but it doesn't sound as if that would be the problem.
Why don't you try injecting SC the following video will demonstrate.
Bee
you will have low iron levels too . I have found taking a t-spoon of black strap molasses each day is great for boosting iron levels . Have you tried a methylcobalamin spray or sublingual lozenge with some CoQ10 ?
A teaspoon of blackcrap molasses contains less than half a mg of iron. It is useless, expensive gunk.
Well, it contains appreciable amounts of calcium and magnesium, so i wouldn't say useless.... meanie
It contains measurable amounts.
One spoonful (I'm not sure how one would cope with more than that) contains 7% of your daily requirements of calcium and 4% of your daily requirements for magnesium.
You could get the same from 30 g of yoghurt (for Ca) and 15 g of mackerel (Mg). I know what I'd rather eat.
Did you really register today, with a username similar to my own, just for this comment?
FoggymeAdministrator
Josie. Posting on a four year old post is unlikely to elicit a response...your reply / question will not be seen by anyone else in the forum and the original,poster here may no longer be active. So...no response.
Suggest that you write a new post of your own so that it's seen by all in the forum.
As this post is so old, I'm closing it to further replies.
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