Just need some advice on self injecting.

[Hayley31]

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.

[Nackapan]

It sounds as though you need a regular regime if b12 injections and stick with it.I also had 2 rounds on fluconazole after antibiotics for dental work.

I continued with b12 Injections .

Any antibiotic can trigger more symptoms

Anxiety is a symptom of b12 deficiency .

Potassium rich food;

Dried fruit

Coconut water

Spinach/ kale

Bannas avocado

Try a multivit .

Have another g.p consultation and bloods done .

Discuss your b12 absorbtion issue and symptoms .

Ask for a trial of b12 injections if you are happier initially to get them prescribed again for reassurance.

[Hayley31 in reply to Nackapan]

Thank you. You are right. I think I will go back to self injecting - maybe at the end of April with a view to 1/2 an injection every other week and I will keep my potassium levels up with coconut water, bananas etc.

[MarvelDC]

Have you got all your other blood results??…. There might be something that stands out that you’ve missed, normal range is very different to optimal…..

l’ve recently discovered that I have very low ferritin level.

Alot of doctors you need a ferritin level below 10 for it to be recognised and treated…. But there are many sources that state a ferritin level of 70 and lower can cause symptoms, it might be worth checking ferritin levels and other things since it would be impossible to tell the difference between symptoms of one or the other… and we can sometimes have multiple deficiencies due to absorption issues.

[Hayley31]

Thank you. When I have had blood tests on several occasions over the years nothing comes up as abnormal. Tbh my GP surgery think I’m a hypochondriac. On one occasion I asked if my ferritin was on the low side and they said it was so I asked if I could take iron tablets even if not officially classed as anaemic? They agreed and I do take a 3 week course of iron every now and again if I have been feeling tired. My last blood tests were done about a year ago. Maybe I just need a yearly blood test?

[MarvelDC in reply to Hayley31]

I don’t know if your aware, but if your in the UK, you can download the NHS app and view all your own blood results without having to go through your doctors, this is one of the biggest tools I use to monitor my health and levels…. Rather than taking the doctors word for it you can check yourself……

I’d say start injecting on a regular basis, so you know your covered from a b12 point of view, download the app and review any previous results, and if anything looks to low, high or unusual, go back to your doctors and ask for repeat bloods, it’s easy to assume it’s all b12 issues…. I did it myself, but sometimes it can be other things since they share similar symptoms

[Hayley31 in reply to MarvelDC]

Thank you! That’s really helpful to know. 😊

[am111]

A B12 injection cannot cause a heart attack. Yes, it feels scary at times, but it passes. All you need is a regular schedule. At least in my experience, any reduction in the dose or frequency causes symptoms. In your case, I think you can safely go to half (I am taking 1/2 to be half) an injection every 2 weeks. Just do it consistently. Don't take once after a week and once after 2 weeks etc. (Special occasions may need an increase in the frequency, such as a viral infection, very hot climate etc. and you can adjust for it.) Once you are totally fine, you may try to reduce if you can and you wish.

[Hayley31]

Thank you. That is reassuring, however I don’t think B12 would cause a heart attack in a normal healthy person but what about someone with a deficiency who hasn’t had B12 for a long time and has been on and off it and then had too much at once and their potassium drops. I definitely had a pressure sensation in my chest in March this year and also in 2017? What was that?

[JHEW0836 in reply to Hayley31]

Hi Hayley31–chest pressure/chest discomfort is one of my main symptoms. One of my last symptoms that just won’t seem to go. I have had all sorts of tests done and no one seems to know why I have it so I believe it has to do with my B12 deficiency. You don’t ever mention folate. What is your folate?

[Hayley31 in reply to JHEW0836]

Apparently my folate is quite high. I’m sorry to hear you have chest pressure as well. Did you have it before the injections or does it get worse after? I’m just so worried that something could happen to my heart from B12 injections because of the sensation I had last time.

[JHEW0836 in reply to Hayley31]

I had it before I started injections. When I have an injection, it does exacerbate my chest discomfort but after a day or so it settles down. I am very sensitive to supplements and medication. What’s funny is my folate is high too, even after a year of injections. I often wonder if that is part of the problem as I don’t supplement. My naturopath told me to limit foods enriched with folic acid because my body may not be converting it into usable folate and it’s building up.