Where can I find up to date medical articles/info/research about which treatments are best and their frequency?

[lisa3vans]

I am newly diagnosed (although had a loading dose of B12 injections at about 23 but then was told I didn't require any more) I'm 31 now and having injections of hydroxocobalamin every other day for a week, then 3 monthly. I am just wondering if 3 monthly is enough and if it isn't where can I find the evidence to show my Dr. Although my Dr seems quite switched on, he's arranging a gastroscopy which is a bit scary. I have some neuro symptoms, dizziness, walking into things and numbness in feet, no idea what my blood results were but will ask for them next time. Any help would be much appreciated, also after 30 years in the UK I now live in Australia so don't know if that will mean different treatments??

[purple-uni]

Hi Lisa,

I'm also in Australia...standard treatment here is also injections every three months. I was sent to a 'specialist' at 31 after having found to have low B12 for the 3rd time (21, 26, 31).

I found most of my symptoms didn't improve for months and that I had to have many injections more than my 'specialist' had originally told me to have. Thankfully my local gp was quite good about it and didn't mind. I still have many of my symptoms and just recently asked on here if anyone knew if these may still subside with long term (and finally consistant) treatment. I haven't really had a response to that....but from my own experience so far, I found I needed many more injections that the initial lot of boosters to start to feel better. Once I had my active B12 levels up to the high end of the Aust guideline (and actually just over) I finally started to feel functional again. From my experience and from what I have read online it seems that most Dr's just see this condition as a vitamin dificiency and not as the auto immune disease that it actually is! I'm still getting a blood test every 3 months to see how stable my levels are...I believe each person can vary in this regard and many find they need the injection more regularly. I've been wondering what level people's B12 is when they need the more regular shots?...maybe their levels are lower?

Good luck with your research and treatment!!

Jacqui

[lisa3vans]

Thanks Jacqui,

I have discovered through reading things on this page that the guidelines in the UK in the BNF (british national formulary) are more frequent injections if you have neurological symptoms, but I'm unable to find any guidelines in Australia, or anything firm anywhere. It seems very much up to the Doctors judgement. I can find no studies or research. Its quite frustrating the internet seems full of stories of people not getting the support or treatment they need. I have looked at NICE, british and american haematological society, and many others. I'll keep looking! All the best to you

Lisa