Hi, I really need advice as I self inject due to the fact that my GP thinks that one injection every 3 months is enough, and that I don't need it anymore as I didn't test positive for intrinsic factor antibody and my levels are okay. What I do know is that my symptoms recur (badly) when I have not had B12 for a long time, but we don't know why I have a problem absorbing. I also have stomach related symptoms, which could be the reason, but getting help and advice from my GP regarding B12 is like banging my head against a wall, so I have given up and now self treat.
in 2011 I was diagnosed with vitamin B12 deficiency, I had every symptom under the sun progressively getting worse, and to be honest my health hadn't been great for a few years. I was given loading doses.
2012: Jan - Apr. Felt amazing
Apr: Had my first 3 monthly, it lasted a few days if that.
May: Learned how to self inject, felt worse before I felt better.
June onwards: Self injected B12 until I felt better, again felt amazing, so continued to inject B12 as and when I needed it. As far as I was concerned problem solved.
2013: Continued self injecting regularly with no problems, however my stomach problems did flare up a couple of times this year (could be underlying reason for not absorbing - Colitis/Chron's/Coeliac?)
2014: Continued self injecting and felt well most of the time
2015: January: Still self injecting
February: Had symptoms worse than when I had B12 deficiency, head pressure, dizziness, muscle weakness, feeling faint etc this went on for about a month and it was really bad. Also had pins and needles in hands like there was something wrong with my cirulation. The worst thing was feeling faint and being unable to think clearly.
March: Stopped injecting B12 as I thought it was side effects from having too much, really scared me, so I stopped.
April - October: Felt a LOT better, in fact felt really well again
October: My B12 defciency symptoms returned so I gave myself loading doses again. Instead of feeling better, I had side effects - head pressure, muscle weakness etc. When I spoke to my GP they just acted like I was really stupid for injecting B12 in the first place (but nothing else works). They think it's migraines, chronic fatigue, anxiety or just all in my mind - it isn't I assure you.
December- Felt a lot better, felt really good again
2016: Jan - May: Felt really well again
May: Symptoms returned. Tried more injections and felt a lot worse.
July - September: Tried injecting again, and felt better.
Tried one injection a month, but one injection wasn't enough to make me feel well, and I had head pressure and actual fainting several times after having an injection. Really suffered for the rest of 2016, but felt a bit better in December after I had a top up of about 4 injections.
2017: Jan - Apr: Loading doses. Felt really well.
Apr- Jun: B12 deficiency symptoms came back but when I tried injecting, I felt worse than I had ever felt in my life!!! Thought I was dying, sorry to be dramatic but I'm not exaggerating.
July - November: Decided to leave it off and felt well for a good six months. Took high dose B12 tablets instead.
November: When my symptoms returned as they always do, I tried patches and a sublingual spray, did nothing, so I tried a one off injection which helped a bit.
December: 2 weeks later my symptoms are back with a vengeance, tried 4 B12 injections and have horrendous side effects including feeling faint and heart palpitations, and now just really do not know what to do or where to turn, as going to my GP is pointless. My folate levels are fine, iron levels on the low side, and I have never tested positive for pottasium deficiency, however my symptoms when I have side effects are similar to that.
I get my health back, and then have it taken from me again and again and it's completely wrecking my life. I don't really want to have to self inject, but I don't want to be ill either, and I don't want these horrendous side effects. I'm in an absolute mess and can't get any help or advice from anywhere.