Ive had a bit of a light bulb moment. My latest theory is that my body is not being able to use the hydroxocobalamin injections that I've been receiving from my GP.
The history is as follows: Received 4 loading doses at the end of July and told 3 monthly thereafter, and although there was a little improvement I went back and asked for a further 2 loading doses after a month had passed. Just 3 weeks after the 6th dose, i went back to the GP and asked for more frequent and was told "no way". After a month I had a blood test and went back again to be told I should be fine because all my bloods were within range and as my B12 level was in the 800s I couldnt be feeling the way I was!!!! I then started using patches which contains methylcobalamin and folic acid as well as supplementing with other B vitamins. Many of my symptoms slowly improved and I found that using a patch on Mondays, Wednesdays and Fridays meant that I could function almost as well as any other person - although I still tire easily and I cannot seem to fix my breathlessness.
I had my first 3 monthly injection of hydroxo on 12th December and stopped the skin patches at that point as I wanted to be able to quantify how this affected me. I was very tired first 3 days after the injection, perked up for about 3 or 4 days then went downhill slowly after that. I eventually had to give in and slap a patch on on Christmas day. So I'm now back onto 3 patches a week to keep me functioning.
My lightbulb moment came this morning and I'm reckoning that my body needs the methyl as its ready to use instead of the hydroxo which needs to be converted in the body. I remember reading this somewhere but I cant find it again. Does anyone know where I can find this information on the internet?