I have been self injecting for several years as I was initially given B12 loading doses and 1 injection every 3 months when I was initially diagnosed with a B12 level of 153. I was then taken off injections and told that I should never have been given them in the first place and couldn’t get them reinstated. All of my B12 deficiency symptoms came back after a while and I had no choice but to self inject. This really helped although I am doing this against medical advice as the GPS act like I’m injecting crack cocaine or doing something stupid and unnecessary when in reality B12 injections were the only thing that worked for me and the only thing that improved my symptoms of fatigue, brain fog, sore lips, dizziness, breathlessness, memory problems, dry skin, no libido and pins and needles. I was told my symptoms were probably anxiety and made to feel like a hypochondriac (despite the fact that I had a diagnosed deficiency and while I can’t prove that now because obviously my levels were now high because of the injections) so I just saw my B12 issues as something I sorted out myself, separate from the NHS. Really speaking I feel like I should be more angry than I am but all I really cared about was “well where can I get B12 from so that I can feel better” I order online from a German pharmacy and never looked back. I found that 1 every 1-2 weeks seems to work for me. Over the last year or so I have dropped it back to 1 a month, however I had it this month and I feel horrendous. I think my potassium may have dropped as it’s similar symptoms to what I had years ago when I was trying to get my levels right and was leaving it too long between injections and then having too much at once. Muscle weakness, neck pain, tiredness, feeling out of breath, dizziness, heart palpitations and a tight feeling in my chest. I’m terrified to be honest. Don’t know what to now???? Anyone else have any experience of this?
Worried out of my mind : I have been... - Pernicious Anaemi...
Worried out of my mind
Sounds like changing to monthly after 1-2 weeks was too big s jump.
You will be on catch up.
Obviously if you think something else going on get checked out by a doctor .
why don’t you go back to doing more frequent injections? I self inject, and when I’ve tried to space them out, the symptoms have come back.
I agree with Mish109719 . You need more regular injections . . Overtime , needs can change and you just need to adjust to that . . Thank goodness that we can get reliable sources from German online pharmacies . Very best wishes 👍
It sounds like what you were doing was completely the right thing and the only thing you've done wrong is letting their nonsense get in your head and reduce your injections!
Look up the best sources of potassium online and make sure you have plenty of everything you like.
You can use a little LoSalt if you are pretty sure that's what the problem is, too.
And then go back to trusting yourself to know what's best for you and your body and do whatever you need to do to get, and stay, well!
Symptoms are your body's way of telling you something is wrong so aim to stay symptom free.
There is no "one size fits all" option and it's wrong to suggest there is - we're all different!
In 3 weeks time I'll have been doing daily injections (of mostly 1.5mg in 1ml hydroxocobalamin) for 9 years and I have been gradually improving over all that time - so much so that in the past few weeks I have had odd days where I've been as well as I was 10 and 12 years ago, despite being a dozen years older!
You can't say that doing my jabs has been bad for me! Sometimes I need ridiculous amounts of additional supplements, sometimes I can get away with less, but always I try to keep my symptoms to a minimum.
It's my life and I'm living it! I wouldn't be alive today if I'd done what the medics had told me to! And not all of them are leading perfect lives, so they obviously don't have all the right answers!
I agree. Medics treat us as if we're heroin addicts on methadone rather than diabetics on metformin. Give yourself the treatment you know you need. One day they might catch up.
Hi Hayley31
All good advice and observations above.
I have your GPs sister for my GP! Rolling eyes 🙄 looking for their brain as one forum member put it.
I always write to my GP about how successful I am self treating - just to get it on my record. They never reply!
My view is that you were self treating beautifully and then when your body upped its healing rate you reduced the B12. In my experience this should be the other way round, when I start to feel better than I have for ages, I increase my B12 and guess what … my body has another healing and improvement spurt. I am current on 4 injections a day and I cannot believe how I have improved so much compared to a year ago.
But do keep an eye on those cofactors as more B12 means more cofactors will be utilised. I did a rough experiment a while back where I increased my B12 but not my co-factor supplements as I had run out. I then compared my bloods before and after and all co-factors showed noticeable dips - especially folate. I took that as a sign that my body is using them for something - hopefully in conjunction with the B12!
Best of luck finding your health path - do keep a symptom and dose/supplement diary.
🤗🤗🤗
You can ask the GP if you are concerned. Being terrified is not a good state to be in.
A few years ago, my arrhythmia got to a stage where I was getting episodes of racing heart, thumping in my ears and dizziness several times a day, making me breathless. Not exertion-related, as they would also occur regularly at night while sleeping - and would wake me, bolt upright suddenly.
My GP sent me for a 24-hr heart monitor -which showed some 4,000 episodes and ventricular ectopics diagnosed : no known cause, and can just go without reason too. No need to see a cardiologist. I was offered statins by my GP but refused them, and waited.
A couple of months later, the problem went of its own accord.
But at least it is on my medical record and made me stop worrying. Both my parents died due to heart conditions- so sensible to enquire.
Probably you will find that it is just that you have the B12 deficiency symptom of heart arrhythmia, which is quite familiar to many here, and need to up your regime. For peace of mind, see a GP to get anything else ruled out.
PS: GPs are far less likely to be familiar with this as a B12 deficiency symptom !
Thanks all. I think I need to go back to 2 weekly, however I’m scared to inject again in case it gets worse but I’m also scared to leave it too long. I know if I can get back to fortnightly or maybe even half an injection weekly I will be okay, but it’s just deciding when is safe to do that as with the symptoms I have had recently I’m worried that my potassium will drop more and I could have a heart attack. I’m even worried that I may have already had 1 or 2 heart attacks and got away with it.
I have not seen any medical studies showing that B12 injections can cause heart attacks. Very rarely there are allergic reactions. You can get potassium tablets. Or eat bananas and try sports drinks (my favorite is green gatorade) to replenish potassium. I tend to get low on it at things like ice hockey tournament. Hockey is a very aerobic sport and with all the protective gear, I sweat gallons when I am playing. Add in drinking at a tournament... I tend to get cramps in my calves when the potassium is low. If I was in your state, I would try every other day injections for a little bit and see if that helps. If you are worried about a severe reaction, then you could make sure you are close to a doctor's office or clinic when you inject.
I do my injections daily; half an inj. in the morning and the second half at night. If I'm under stress or ill I usually need a third injection during the day, but not always. I tried spacing them to twice weekly, but all my symptoms snuck back on me before I knew it I was as bad off as before, maybe worse. The symptoms snuck back slowly and compounded over time, so I didn't realize what was going on until I was super sick. It did not help that the b12 I was taking I'm sure had lost its potency. This was before the nice people on here helped me figure out where to source my own b12, I'm in the USA.
Thank you. I have been drinking coconut water and eating bananas and yoghurt over the past few days to get my potassium levels up and it is helping. I think I will coast for a couple of weeks and then try 1/2 an injection every 2 weeks for a while and see if that helps. Hopefully it will, but I’m just so scared my potassium will drop again and I’ll have heart symptoms worse than this time. A few days ago I genuinely feared that I was going to die. I do have a lot of anxiety, but at least now it feels like I have a bit of a plan.
I think you have become overly concerned with potassium. You had very similar concerns about potassium 7 years ago which don't seem to have changed at all which is a concern. If I read correctly you had B12 loading doses and treatment since 2011 so its more than a decade since potassium depletion as a result of correcting megaloblastic anemia would even be a (theoretical) concern.
healthunlocked.com/pasoc/po...
However I would echo what others have said about not reducing to once a month if symptoms return, but keeping a high enough frequency that keeps you well. Reducing frequency can be experimented with but you should not doggedly maintain a low frequency, like once a month if that frequency is not keeping you well.
It’s because I’ve been on and off it, that’s why. If I have gone a long time between injections surely my potassium can drop again rather than if I was on a consistent dose.
It's not that potassium would drop by itself, its that, if a severe B12 deficiency developed, megaloblastic anemia might occur, but you should be able to tell that from your MCV. If its normal, then you likely don't have megaloblastic anemia (unless there is concurrent iron anemia).
It's the initial correction of a severe megaloblastic anemia which would potentially cause significant potassium depletion when B12 is corrected, since a lot of misshapen red blood cells need to be replaced. If you haven't become B12 deficient enough to cause severe megaloblastic anemia, then you don't need to worry about potassium.
A B12 deficiency will not, in and of itself, deplete potassium stores in the body. Serum potassium is incredibly tightly regulated as an electrolyte and does not budge easily, even with dietary changes in potassium intake.
Many healthy foods contain good amounts of potassium so if you focus on those you will ensure potassium stores are in good shape. Bananas are overrated for Potassium (10% RDA) but a decent source of B6 (20% RDA). If you want a great potassium source, most legumes will way outperform Bananas, but again, not really something to worry overmuch about.
Thank you. I think I was sick enough to have megaloblastic anaemia. This only happens when I have been off B12 for a long time and then I go back on it. It happened in 2017 and again in July last year and again recently. I think my body has to go through the whole healing process again and it depletes potassium. When I'm on an even keel with my B12, having a regular injection I'm absolutely fine and healthy. I think little and often is the key for me, maybe half an injection every 2 weeks. I'm drinking coconut water, eating bananas, legumes and yoghurt to try and reduce the symptoms I'm having over the last couple of weeks. It's helping.
I wouldn't second guess your potassium unless it tests out of range as it can cause unnecessary stress and worry and that's my biggest concern with your mindset towards potassium at the moment. Again, unless you actually became very anaemic (generally a high MCV) in the time between injections, which is extremely improbable if we're talking about just a few weeks, then theres no chance potassium reserves would be depleted when restarting injections. Becoming B12 deficient won't deplete potassium in and of itself. I empathise with your concern but I don't think it's based in reality.
Take it from someone who worried so much about potassium I called an ambulance thinking I had hypokalemia, 😅😆 (shame). B12 deficiency fiddles with your neurotransmitters or at least that's the excuse I'm sticking to 😊.
You shouldnt take a break from an essential vitamin unless you are wondering if you can reduce the dose frequency, but don't persist trying to reduce the frequency further and further if symptoms keep returning.
It's possible that your heart issues could be something serious. I would get that checked out but also go back to using B12 more often since it seemed to be working better for you.
I really hope not. I only get it when I go back on B12 after a break.
So don't take breaks?
That's the key. Little and often. One every 2 weeks, I'm just worried that it will get worse when I have my next one, but if I leave it too long, and then have it, it will be even worse than that if that makes any sense.
I have noticed that once each 3 weeks is not enough for me. Instead of injecting once per 2 weeks, I just do it once per week to stay on top of things.
My plan is to build my potassium levels up, then when I next have an injection my body will have done the healing so hoping this won't happen again. I think once I'm back on a regular injection, I'll be flying, it's just getting back to that point.
I’m still really worried and scared to self inject ever again. I have felt really unwell for just over 2 weeks and should have gone to the hospital, although my symptoms have felt better than they did last week anyone else would have gone to the hospital with symptoms like chest pressure and I feel like I can’t because they will just say I shouldn’t be self injecting B12. The whole reason I reduced my injections in the first place was because they said I shouldn’t be having it. I was fine on 2 weekly and now I have stopped and started again this has happened and I’m on my own with it because if I ask a health professional they will act like I’ve been injecting crack cocaine and like I have done something really stupid when I know I had good reasons for my self injecting in the first place. I just don’t know what to do.
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