In 2011 I was diagnosed with a B12 deficiency after a year or so of chronic fatigue along with dizziness, brain fog, pins and needles in hands and feet and sore lips/tongue. My B12 level was 154. I was given loading doses and felt fantastic for almost 3 months. I was in my late twenties at the time. I had 3 monthly injections but would really be struggling towards the end of the three months.
They then took my injections off me, said I didn’t need them as they are only for people who can’t absorb B12 and they couldn’t prove that I can’t absorb it, despite the fact that without injections my symptoms come back. Nothing I said would persuade them to put me back on them.
I tried B12 tablets, even patches, nothing helped.
After researching online I read that a lot of people were having similar problems and many people self inject. This is not a decision I took lightly. After speaking with someone from the pernicious anaemia society I began ordering online and self injecting every other day until I felt better. It took a while to get my levels right but I found once a fortnight worked really well for me, I continued to do this for several years, I felt great and never looked back.
I was advised by my GP to stop self injecting, in fact they made me feel like I was injecting crack cocaine and that I was doing something really stupid. I stopped the injections thinking if the drs don’t think I need them then maybe I don’t. After six months I after stopping injecting the symptoms returned. Out of desperation I went back to self injecting and this cycle continued for a while I would stop injecting go back to it and then find I had symptoms from having too much at once after a long break.
Eventually I got back on an even keel with fortnightly injections and felt well for several more years.
I came off it again recently and now I’m scared to inject as last time I was told your potassium levels can drop, so I drank a LOT of coconut water which is high In potassium thinking it would help and my potassium actually went to a dangerously high level and I became seriously I’ll from that. That was a few weeks ago.
The problem I’m having now is SEVERE fatigue and I’m scared to go back on B12 even though it’s the only thing that helps and my GP can’t help me as once you’ve injected your levels remain high in a blood test regardless of symptoms and they don’t approve of me self injecting so I just don’t know what to do.
I also can’t explain to people why I’m sometimes really not well and unable to do things, as B12 deficiency sounds trivial (even though I am EXTREMELY debilitated by this) and they just think you can just have B12 and be cured, it’s much more complicated than that. I have a friend who goes on and on at me about the fact I haven’t had kids but the reason is because it could be dangerous with all of this going on, but she doesn’t seem to understand that.
This is ruining my life! Does anyone else have experience of this?