Hello there, i live in the uk and wonder if someone here can help me, here is a brief outline, my b12 was low 300 , my GP agreed I could have six loading injections of b12 as I have symptoms of tiredness burning feet aching legs terrible forgetfulness and so on. After the loading doses I felt somewhat improved so I asked if I could have them on a monthly basis as I thought every 3 months was not frequent enough, In any case after the loading doses they gave me a blood test, the number came in high
the GP wrote to me saying that I couldn't have the monthly shots as my b12 was way too high, I phoned to ask how high, reception wouldn't tell me, so I arranged for a nurse to call me back, anyway the GP called instead, he only kept saying that it is way way too high but wouldn't say how high, in the end after asking him what must have been a dozen times he said over 2000 even then he wouldn't say by how much!!!
By this time I am sick and tired of this, he said I can have one every 3 months, I know this won't help me as 2 weeks after the initial loading doses my symptoms were coming back legs and feet tingling uncomfortable, anyway after all this, I don't want to see this GP at all.
All of that being said, my loading dose was 1ml of the b12 each time, I would like to buy my own b12 and the syringe with fixed needle, to enable me to take care of this myself, as the stress of opposition is too great to fight!! my question is where is the best place place to buy these things, I'm reading various needle thicknesses and so on. Any advise please, thank you in advance!
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Emily2007
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Your doctor shouldn't have bothered testing you while supplementing. Experts recommend against it. They also state that there's no such thing as 'too high' when it comes to B12. frankhollis.com/temp/Summar...
The reason he didn't say how far above 2000 your levels were is almost certainly because that's the upper limit of the assay being used. My levels come out at 5999 each time for the same reason. But I still need a jab each week.
Not user why you want to use fixed needles. Most people use two different needles - a big one for getting it out of the ampoule and a smaller one for injecting.
I think this is terrible - up against a blank no from the gp is pushes to many people (see these posts!) into self injecting. This lets the medical profession off the hook.....
You mentioned burning feet and forgetfulness. My understanding is that these would normally be considered neuro symptoms. Do you have other neuro symptoms?
In the UK, the standard treatment for B12 deficiency with neuro symptoms includes loading doses for an extended period and then injections every 2 months. Info on Uk treatment can be found in
1) BCSH Cobalamin and Folate guidelines page 8 (I also found page 29 useful)
2) This link contains treatment info based on BNF (British National Formulary) in Management section.
Have they given you an IFA (Intrinsic Factor Antibody) test? This can help to diagnose PA but is not always reliable...it is possible to have PA even if IFA test is negative.
There are two ways of injecting - intramuscular - which is what will be done by the nurse/GP nd subcutaneous - which is the way that anti-coagulants post operations are done, and diabetics used to inject prior to the introduction of insulin pens.
These days I think that the anti-coagulants come in syringes that automatically retract the needle.
I'm afraid I am not aware of any source of B12 that comes in ready filled needles so whatever you do you will need to order ampoules and fill syringes from those.
I inject subcutaneously using insulin needles - though I understand that intramuscular is quite straight forward once you have been shown how to do it. For intramuscular you need longer finer needles which is why people tend to use 2 needles - a thicker one for drawing up the B12 from the ampoule and the other for actually injecting.
You can get insulin needles quite easily on line - I get mine from medisave. Ampoules can be ordered from germany - fbirder provides link to one site - I use mycare.de and others use amazon.de. Filling needles from ampoules sounds quite daunting but is relatively straight forward once you find the dot that marks the place where the glass is weakened - and you can always put up a post and have a load of answers on how to get into the ampoules.
The main reason why your GP couldn't give you an exact reading is probably that the result came back as >2000 - which isn't a surprise given the time from the loading shots. This is because 2000 is the highest reading on the machine being used.
Unfortunately the serum test is pretty meaningless once you have received shots unless it comes back low - tells you what levels you have in your blood but says nothing about what is happening with the B12 getting into the cells where it is needed - having B12 in your blood is only one part of the story. Also, a lot of GPs mistakenly think that B12 is a blood disorder - it isn't. Guidelines tend not to help in making this important fact plain.
As sleepybunny comments - recommended regime for people with neuro symptoms is onceevery 2 months - though that doesn't help you as you say that you can't really go beyond 2 weeks.
I really wanted to weep when I read your post. This is exactly my experience. You describe my symptoms and my journey since diagnosis with Vit B12 exactly - my GP won't give me injections any more frequently than 3 monthly either despite having marked neurological symptoms. She said they weren't severe enough!! I have totally lost any respect for her and faith in her. I am a nursing lecturer and have read everything I can about the issues but still my GP knows best. It is a horrible situation - so much for healthcare partnerships between patients and doctors!! I too am going to start self injecting but we shouldn't have to. I truly hope the recent petition for Jeremy Hunt had some impact. I wish you well and hope your own injections help.
Hello Sleepybunny - I haven't spoken to the PAS. I have read so many posts on this discussion board that tell the same story. I think I will join and contact them and see what further advice they can give. Thank you. I am so pleased PAS and this page exists.
Try going back to your GP with a symptom diary, a friend/family member and the BCSH guidelines which state no testing after treatment as levels will be high to see if they will reconsider. The guidelines clearly state that if there is a symptomatic response, then continue the treatment. Also did you have intrinsic factor and gastric parental cell antibodies checked? They will be positive in some people with B12 deficiency and make your case stronger. What did your blood count show? If your red cells were large, that further strengthens your case. Do you have a family history of PA?
I had neurological symptoms only and negative antibody tests with B12 deficiency but there is a family history of PA.
I'm sorry that you are another one with the same problem.
As well as self injecting, please look at the cofactors you are likely to need to keep metabolising the B12 - a broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium. You might need extra iron too.
For more information you could look up my profile and see my post "My Experiences".
I would have thought that a nurse would know that the needle colour determined the gauge, not the length. Both blue and green needles are available in a range of lengths, and those ranges overlap.
So a long blue needle is longer than a short green needle.
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I need help getting proper needles and syringes for self medicating with B12 for the pain. One injection per month is not enough.
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