Hi
I was diagnosed in 2011 after years of symptoms getting progressively worse with no explanation. My B12 level was 154 and I felt horrible. I didn't test positive for intrinsic factor antibody, they found no cause for my B12 deficiency. I had loading doses (6 injections over 2 weeks) and felt SO much better for about 3 months. They gave me my 3 monthly injection which did next to nothing, and then took me off injections telling me I didn't have PA, didn't need them, despite the fact my symptoms were back with a vengeance (dizziness, extreme tiredness, memory problems, skin drying out, pins and needles in hands and feet - like a burning sensation, feeling extremely restless, breathlessness, heart palpitations, no sex drive, sore lips, sore tongue - felt like lips were burning, pale, hair falling out in shower, extremely dry skin especially my hands, what felt like a permanant water infection, bloating, IBS like symptoms, racing mind, depression, anxiety and problems with my speech) was told there was nothing wrong with me and that I probably had stress/anxiety or migraines/chronic fatigue, nothing to do with B12. As I knew B12 was the only thing that had ever made me feel better (and believe me it cured every single symptom) and that other people had had the same problems with diagnosis and treatment I read up on it through the PA society and learned to self inject. I bought B12 from Goldpharma and although I was really scared about doing this I was desperate to feel better. I began to self inject every other day until I felt better and within days, the magic happened and I felt really good again, just like I did when I had loading doses. I continued to self inject regularly when I felt I needed it for the next 3 years. Then in Feb 2015 I began to feel unwell again, head pressure, feeling faint, burning sensations in hands and feet and dry skin, salty taste in mouth, I really started to feel like I was dying and I'm not exaggerating. I had no idea what was wrong, but was advised to stop injecting B12. So I did and within a month I felt SO much better. I realised I had probably been overdoing it on the B12 injections and really taxing my body. I felt well for six months, and then in October when my PA symptoms returned I gave myself loading doses....instead of feeling better, I had side effects, weakness, head pressure, problems with balance, they lasted a couple of weeks and then gave way to another six months of feeling good. I had loading doses again when it wore off and felt awful, so had a few more injections and again, another 3 months of feeling good, so I tried to self inject every month, but it wasn't enough. I just had side effects and feeling faint every time I had an injection and it wasn't enough B12 to make me well. I was despondent. I had loading doses again in January this year and felt amazing for over 4 months, then in May, my symptoms returned but when I tried the injections again, I felt horrible, really really unwell. So I stopped, and have recently had another six months of feeling good. My symptoms returned recently and so had more injections but have heart palpitations, head pressure, feeling faint. I can't go on like this. What am I doing wrong. I'm left to deal with this on my own, as my GP won't give me injections or refer me to a haematologist. I'm treated like a junkie if I admit to self injecting and I get zero support from my family who think it's all in my mind. Any help would be appreciated I'm completely on my own with this and it's affected jobs, relationships and everything else in my life in a really big way. Sorry for the long post.