Just need to come up with a safe plan for what to do about my B12 injections.
After several years of symptoms like chronic fatigue, brain fog, dizziness, pins and needles, sore lips, dry skin, breathlessness etc I was finally diagnosed with a B12 deficiency in 2011. My B12 level was 154.
By this time it was also affecting my mental well-being and I was even starting to get short term memory problems. For years all of my symptoms had been put down to anxiety or chronic fatigue or migraines or “there is nothing wrong with you, it’s in your head”.
I had every test under the sun and they could find no reason for my B12 deficiency, but I was told there is likely a problem with absorption we just don’t know why. The other problem I get is recurring Candida issues and I have also had angioedema. All good fun.
I was given loading doses in 2011 and within weeks I felt amazing, all of my symptoms disappeared. I then went onto 1 injection every 3 months. I also had vitamin D deficiency and was slightly anaemic, so I’m on life long vitamin D supplements and went on iron tablets for a short time.
In 2012 at some point I was taken off the injections and told that I should never have been given them in the first place as they are for people who can’t absorb B12. I couldn’t get them reinstated (believe me I tried)within a few months without B12 I was back to square one, all of my symptoms came back and that was when after researching online and finding that a lot of people were having similar problems I took things into my own hands and decided to try self injecting.
I bought B12 online from Goldpharma and self injected every other day. Again, within days I had a miraculous recovery and continued to feel well. I confused with the self injecting on a regular basis and didn’t look back. I gad found what worked for me and so it didn’t matter that it was separate to the NHS guidelines as far as I was concerned.
Then in 2015 I began to get symptoms like feeling faint a lot, head pressure, neck pain, dizziness, swollen stomach, and constantly had this weird salty taste in my mouth. I was also struggling to think clearly, it was scary. This was way worse than my B12 deficiency. I had every blood test under the sun and they all came back normal. I had no idea what was wrong with me. I was also diagnosed with a kidney infection around that time which was treated. The only thing I could think that I was doing differently from anyone else was B12 injections, so I stopped them and after a month or so I felt so much better!!! I stayed off them for most of 2015 and felt absolutely fine I must have had enough in my system to keep me on an even keel.
In 2016 & 2017 I would give myself loading doses every 6 months, but this was a mistake as what I was now finding is that going months without them my symptoms would return and on a couple of occasions I think my potassium may have dropped as I had a lot of symptoms going back on them, or it could have been symptoms reversing themselves. At the end of 2017 I had chest pressure and heart palpitations after going back on B12 after a long break. Scared the hell out of me and I still wonder if I did have a heart attack and survived it.
I realised that it was the being on and off it that was the problem so in 2018 right the way through to mid 2022 I had B12 every 1-2 weeks and I felt good on that. This is what I should have continued to do.
At some point in 2022 after blood tests for an unrelated issue I was advised to stop self injecting B12. To be honest on several occasions GPs have acted like I’m injecting crack cocaine when they realise I self inject and it scares me that I have been doing this against medical advice, even though I have good reasons for doing this. So I came off it for a while and went back into one every 3 months.
In 2023 I increased this to once a month and I felt okay on this (although on one occasion I did have heart palpitations after self injecting). I continued with the monthly injections this year in 2024 and then tried to bring it forward to fortnightly and I had my last injection after also taking 2 flucanazole tablets within a week of each other (flucanazole can also affect your potassium). Within days I had neck pain, muscle weakness, chest pressure- really I should have gone to the hospital but didn’t.
This was all about a month ago and while thankfully the neck pain and chest pressure have subsided I’m back to having brain fog, fatigue and all the classic B12 deficiency symptoms and don’t know what to do. I’m scared to self inject again in case it depletes my potassium or I have a heart attack.
I just don’t know what to do for the best. I need to be on regular B12 but how will I know when it is safe to self inject and how can I reintroduce it slowly as I want to build up to 1/2 an injection maybe every 2 weeks as that really suited me, but I don’t know how and when it will be safe to do this.
Any advice would be appreciated.