Is there Any Up To Date Research To Support More Frequent B12 Injections?

[AutoimmuneAnnie]

I have an appointment with my GP on Friday at which point I will discuss that I have been self medicating. I gave up asking my GP for more regular injections so just decided to go it alone. It would be great to go armed with new research that states some people need more frequent injections than stated in the Nice guidelines. Does it exist?

[Margo]

Hello AutoimmuneAnnie, I would be interested what Nice Guidelines state regarding B12 injection frequencies. I have a B12 injections every 4 weeks, I have never questioned it, but I know most people are lucky to receive one every 3 months. I have never been told I have P.A. so assume it is because I had my thyroid removed and this perhaps would affect B12/gut issues.

[Polaris]

I don't know if these links will help Annie.

'Early treatment may prevent devastating complications':

ncbi.nlm.nih.gov/pubmed/114...

Or the BMJ research document, if you haven't already seen it. It says treatment should be given for PA until no further improvement, as well as advice on further tests and when to refer to specialists. The summary gives main points if GP won't ready the document.

cmim.org/pdf2014/funcion.ph...

This site gives helpful advice and templates for writing to your doctor:

b12deficiency.info/signs-an...

Good luck with your appointment.

[AutoimmuneAnnie in reply to Polaris]

Thank you very much Polaris, I will print copies out and show them to her. To be honest though, I have been self injecting B12 more frequently just recently and along with an increase in my thyroid meds started this week, I am feeling a lot better. So, I know that both are working. The main reason I am going to my doctor is for results of some blood work I had before I began my mediation increases. It would be great to have my doctor on board, I would love to have the type of relationship with her where we could work as a team, where she would let me experiment under her supervision until I found the right treatment regime for me, but sadly I don't so I have to do it alone, like so many of us. I think practice will change in the future, as more and more patients of Pernicious Anaemia, thyroid disease and other autoimmune diseases become confident in doing their own research and self treatment. Life feels great when you can not only function but live with vitality and health. If I stuck to the treatment regime my doctor set I would be feeling very unwell indeed.

Thanks for your help, some really interesting reading there.

[Polaris]

This is an interesting link, seeing as you have PA and Hashi's. It makes a connection with raised homocysteine and heart problems, which is usually treated with B vitamins.

ncbi.nlm.nih.gov/pubmed/259...

[ollie7horse]

Hi Annie,

I went armed with a copy of The Scottish Petition to Parliament. recommended by PAS, also a read out of a Presentation by PAS with all the latest research, leaflets on the Active B12 test (which he refused), and recommended guidelines by BMJ regarding nerve damage he wasn't interested, said he had to follow NHS guidelines and there was no question of more injections, he also stated he would not teach me to self inject and that I would be really stupid to do so. So I went home and learned from a Youtube video of an American girl who injects B12 every month for her hair!!!

Not all doctors are the same though, I have heard stories of people who have been helped with learning to self inject and indeed more frequent injections, so good luck, let me know how you get on.

Linda X

[AutoimmuneAnnie in reply to ollie7horse]

Thanks Linda, good for you for being so prepared. I must admit during past appointments when I have felt very unwell I have just sat there and cried in front of my doctor. No wonder she handed me a script for antidepressants hey, haha!. Personally, I do think it is hard for Doctors, they are indeed governed by the NICE guidelines and not encouraged to go outside those protocols. They don't want to risk their careers I guess. What the answer is I do not know but for now I will continue to self medicate and continue to look for ways to help me manage my autoimmunity status.

That is great news that there are doctors out there who are willing to support patients to self medicate and self inject to relieve them of their symptoms. I just wish mine was one of them.

Annie x

[Polaris]

Another link, which actually states B12 def. is treatable with monthly injections:

ncbi.nlm.nih.gov/pubmed/750...

[AutoimmuneAnnie in reply to Polaris]

That's brilliant, thank you so much. This is all good stuff I am sure though, she will have a copy of Nice Treatment Guidelines in her hand when I walk through the door. Haha!

[Gambit62 Administrator in reply to AutoimmuneAnnie]

NIM is in the US so talking about treatment with cyanocobalamin - which would generally be done monthly where-ever you are.

Unfortunately hydroxo isn't licensed in the UK for maintenance injections more frequently than 8 weeks - heaven alone knows how that once is justified as most is manufactured in Germany and the packaging there recommends monthly use.

Problems with the frequency of hydroxo seem to go back to the 1960s following a study that showed that on average people maintained hydroxo twice as long as cyano ... but the study also made it quite clear that there was a lot of variation and there were a significant number of people in the study who reatained cyano longer than hydroxo and even there the lengths of retention vary a lot. Sorry but I'd have to hunt around for a reference to the study.

There was also a study in Canada more recently that highlighted the variation in time that people retain B12 ... again would have to hunt around for the references - but that was part of the information that PAS fed into trying to get BCSH to revise their guidelines, though I don't think it was fully reflected in the guidance - you may be able to find something on the PAS website itself - you can get there by clicking on the PAS logo at the top.

[Frodo in reply to Gambit62]

Sorry to chip in - a bit confused re "hydroxo isn't licensed in the UK for maintenance injections more frequently than 8 weeks" I thought the guidelines said that if people are symptomatic, Drs ARE allowed to prescribe more frequent injections? This sounds like they're not allowed to offer more frequent injections even if they want to?

[Gambit62 Administrator in reply to Frodo]

cks.nice.org.uk/anaemia-b12...

Maintenance dose (where the vitamin B12 deficiency is not thought to be diet related): administer hydroxocobalamin 1 mg intramuscularly every 3 months for life (standard dose). Note that the manufacturers' licence is for every 2–3 months.

The note, as I understand it about manufacturers' licence applies to use full stop - though possible that I am wrong.

This can't be something that is driven by the manufacturer as notes for B12 in Germany say once a month and it is the same as the maintenance doses I get at my GPs surgery.

Yes, GPs can ignore the licence and treat as they think is appropriate but ...

[Frodo]

So sorry Gambit, I may have clicked on 'report post' accidentally (tired). Hope not - just wondered what the little arrow was for.

Anyhow - thanks for reply. Odd that it's a different licence in different countries for the same product. There can't be a medical reason for that then. My concern is that it provides an excuse to discontinue treatment as often as is required (and I've been allowed to try weekly initially).

[mardiray]

If you read the leaflet that comes with the B12 vials, it says 'every two to three months' for frequency of injection. So, armed with that a doctor has to admit that the pharmaceutical company is stating that it is ok to use two monthly. If you get no joy then change practices. Our last was better. With this one we have to pay for the B12.