I’m in a complete mess. In 2011 I was diagnosed with vitamin B12 deficiency, my level was 154 and I also had vitamin D deficiency and iron deficiency at the same time. I was given loading doses of B12 and felt so much better and then went onto 3 monthly injections. I found that towards the end of the 3 months my symptoms were returning, they then took me off the B12 injections completely and then I was back to square one. They said that I don’t need them for life as they don’t think I have an absorption problem. I felt as bad as I did before I went on them, I tried B12 tablets, patches but they didn’t help much. I asked several times at my GP surgery but couldn’t get my injections reinstated. In desperation I took things into my own hands and went down the route of self injecting. I buy the B12 online from Goldpharma. I have myself regular B12 injections and before long felt so much better again, after years of going backwards and forwards to my GP surgery and no one having the answers and on occasions being made to feel it was all in my head B12 injections were the only thing that worked. However I think I took it too far and was injecting way more than I should. At the end of 2014/2015 I began to suffer from head pressure, feeling faint after eating and stomach bloating/frequent urination. Really didn’t feel well at all and it scared me. I thought it might be the B12 so I stopped it. After a few weeks my health returned to normal and I felt good for six months. Then the tiredness and B12 deficiency symptoms returned, so I self injected again, Once every other day for 2 weeks. I then had muscle weakness, head pressure and neck pain. I panicked and after researching on here found that your potassium can drop when you go onto B12, so I had blood tests my potassium didn’t come up as low, however I increased potassium in my diet and drank coconut water each day, my symptoms disappeared and I felt better. The next 2 years were a rollercoaster. My GP surgery really don’t think I should be self injecting B12 and act as if I have said I’m injecting crack cocaine, not a vitamin. So obviously I stopped self injecting as I don’t want to do something without medical advice in case it’s not safe. Over the next 2 years I found that if I didn’t have B12, after a few months I would go back to feeling so tired I could barely function, brain fog, pins and needles, sore lips etc and I would go back on the injections and then go through the low potassium symptoms. So I would have 3 months of being really well followed by a few weeks of being really tired, then having B12 then a few weeks of weird low potassium symptoms then feeling well again. At one point I had chest pressure. All of this scared me as I just didn’t know what to do. If I don’t have B12 I get unwell and then if I do it scares me as it’s against medical advice and then I get these symptoms. From 2018 -2022 I managed to get my levels under control, I just had one B12 injection every 2 weeks and that sorted it. I did not worry about my B12 the whole of that time. Then after having Covid-19 in 2022 and when I had blood tests from immunology as I also have angioedema they said I should stop self injecting B12 (as obviously my B12 was sky high in a blood test) so I did, and it took a good few months for my B12 symptoms to come back. I have gone back onto fortnightly injections recently and over the last few days I have had head pressure, dizziness, heart palpitations, stomach bloating and I’m petrified. I’ve sat here today scared I’m going to die. I also suffer really badly from anxiety and panic attacks and this has been bad over the last few months. I have just had 2 glasses of coconut water and the feeling like I’m going to die feeling and racing heart has calmed down. I’m also worried that the head pressure could be something else. I also have neck pain. I’m in such a mess with all this, it scares me that I’m self injecting against medical advice and wouldn’t be doing this if I didn’t strongly feel I need to.
Terrified : I’m in a complete mess. In... - Pernicious Anaemi...
Terrified
All your symptoms are familiar to me.Your g.p is aware you are injecting b12.
Try and keep to a regime and keep notes.
Don't worry about your potassium if it's never been low .
You need an uo to date blood test on iron ferritin , folate and vit D .
Once low you probably need a maintenance dose along with b12 .
If oral b12 doesn't help you obviously do have an absorbtion problem.
If your diet is not restricted and you eat a good mix of food it's an absorbtiin problem.
Are you on any medications ?
See a different doctor snd book if you can a double appointment.
Get the bloods done to rule out anything else going on
PAS cen help if you a member or on their website.
Lots of links to read on here .
It sounds as though b12 works for you if on a regular regime. .
We all get blips.
It's very hard if your gp not supporting you.
I waded through 6 to get one to listen.
If you find one with an open mind.
Stick to one for some continuity .
I know this is very hard .
Don't worry about injecting b12 .
If you need it you need it
Hi Hayley,
Not nice to feel like you do right now, it sounds horrible. 🌺
My first thought is always go to your doctor and let them check you out before anything else.
You have a good description of your symptoms, you could use that to let them know what's going on right now. That will take care of the immediate medical side of things.
Secondly, someone more experienced than me will help you I'm sure, but while waiting for replies, could you post your latest blood results nhs or private?
That will get the ball rolling and help members help you.
Best wishes to you.
"they then took me off the B12 injections completely and then I was back to square one. They said that I don’t need them for life as they don’t think I have an absorption problem."
If you didn't have an absorption problem, then why do they think you became deficient? Is a dietary issue suspected? (vegetarian/vegan). If there was an absorption issue but it is now resolved, did they explain how this happened? B12 injections do not cure PA - if you have PA due to Metaplastic Atrophic Gastritis, then this requires lifelong B12 treatment. The cause of the B12 deficiency should be understood if possible, to help decisions on long-term treatment. Tests for PA should be considered if dietary and other causes ruled out. It is NOT SAFE to cease injectable B12 treatment if an absorption issue has not been ruled out (and maybe I missed something but I don't see where it has been ruled out in your case).
It is not possible to overdose on B12 and it doesnt sound like the frequency of your injections was particularly extreme since there are many that inject EOD and some even more frequently (daily or multiple times daily). You may find you do better on some formulations than others.
"Treatment with high dose vitamin B12 been shown to be safe for more than 50 years"
article on high dose B12 treatment: stichtingb12tekort.nl/engli...
Potassium should not be an issue due to B12 injections except in early treatment, when anaemia is present and being resolved. You are long past those early treatment stages so I would not worry about potassium other than getting enough via a good diet.
Go by your symptoms. Unfortunately, many doctors are not well informed about B12 deficiency. It is very clear you need regular injections. If you were fine with an injection every two weeks, you can just continue. Or, if you feel well on once-a-month, that should generally be sufficient as well. Oral B12, even high doses of 1000-5000mcg.day doesn't work well for all, possibly due to less/variable absorption, so best to go for 2-weekly or monthly schedule that has made you feel well.
Agree with above. Consider SI every two weeks or more frequently if need be.
Optimise your vitamin levels.
Have you had your thyroid checked. Do it privately and share your results with the thyroid UK site on health unlocked. Don't trust a doctor's interpretation as most know as much about thyroid as they do b12!
I despair that doctors can simultaneously decline to treat you for b12 deficiency, disapprove of you treating yourself and complain that they are over worked. Why don't they simply help their patients to be well and thereby reducing demand on the "health service"?
Thank You. I’m not vegan or vegetarian. Have had tests for everything: intrinsic factor antibody, h pylori, coeliac etc. No clear reason why I became deficient in the first place and because of the injections I come up sky high for B12 in all tests so if I complain about B12 deficiency now, they tend to just think I’m being ridiculous. So I’m left with the choice of let it run down and feel horrendous or self inject. I think I will go back to one every six weeks then one a month then once every two weeks and see how I go. Hopefully I can get it back on an even keel. It’s the being on it and off it and the fact that I’m doing it without medical advice that scares me. I think because I left it then went back on it I worry my potassium could drop.
Hi Hayley, what kind of B12 are you using for self injection. I get wierd weakness and feeling mentally not quite right if I take too much methyl-cobalamin, but am fine with every other day injections of hydroxo-cobalamin. Some people find they get funny reactions to one type but are fine with others, so is really worth checking that.Make sure you are getting enough, vitamin D, magnesium and other B vitamins, that you are eating a healthy diet. I wouldn't worry too much about potassium if it's not low, unlikely to be that.
Recovery can involve a lot of confusing ups and downs where you are not sure what is working. But once you make sure any other deficiencies are taken care of and you are having B12 injections at sufficient frequency, everything falls into place .
Most important is to try a different kind of cobalamin. Your symptoms when you had "too much B12" sound a lot like mine with methyl-cobalamin, and which don't occur for me with hydroxo-cobalamin.
Being caught between the fear of what will happen if you don’t inject and the anxiety of doing it without medical approval is obviously causing you distress. I know that feeling well and my record of injections over the past two years is erratic - periods of trying to delay injections followed by a near mental breakdown and then acceptance that I really do need to inject, but not doing it frequently enough.
Ignore the attitude of your doctor. You have been forced into the situation of having no firm diagnosis so your doctor won’t help you. People all over the world are b12 deficient without having an identifiable medical condition to account for it. And treating it is not a crime!
Follow the advice of other knowledgeable members here - and try different forms and frequencies of b12 and put your health first.
B12 is never mentioned when I see my gp now. Despite my sky high test results. I would prefer an official diagnosis but accept that even that wouldn’t lead to adequate treatment. Hope that helps you rationalise the situation.
Thank you. I have hydroxycobalamin, I tried methylcobalamin in the past but found hydroxycobalamin to be better. I worry that it’s the being on it and off it that’s causing the problem, and that when I go back on it after a long period of time it’s like being back at square one and at that stage I get symptoms. My potassium wasn’t low when I lay had a blood test, but haven’t had a blood test this last week since I have had these symptoms. I was at my best those 4 years when I just had it once a fortnight. I didn’t even think about it during that time so I definitely need to work back to that. In the meantime, my heart was racing all day yesterday and I have never had heart palpitations that don’t seem to stop before. I’m worried I could have developed heart problems.
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Yeah, just get back to doing regular injections at the right interval for you. Def if you are not having the injections regularly it messes things up, you get the deficiency symptoms, then you get the symptoms of your body repairing itself once you have the injections, then back to deficiency. If you have it regularly for some time and make sure you are getting all your other nutrition right, everything should settle. I had heart palpitations when my B12 was messed up. Now I'm getting enough injections and enough nutrition, I don't get them any more. All the best!
Also some GPS say if it makes you feel better then that’s fine, others act like I’m doing something really stupid and dangerous, but I know I need B12, I just can’t prove it because of my sky high results from the self injecting.
If you know something then don't ignore it. Take care of yourself. Yes, we can't prove it, although there are some tests like MMA that indicate that the body is experiencing deficiency, even if blood levels of B12 come back high. Don't think such tests are done at the moment, but hopefully once the new NICE guidelines have been published that will change
Hi Hayley31, have you had a full iron panel, folate, D, and thyroid (re)tested?
Those can also cause the palpitations and other symptoms you describe. It's not uncommon to be iron deficient again if you've been in the past.
If GP will not test you can do your own private testing. thyroiduk.org/help-and-supp... If you need help, let us know.
If you already have blood results, feel free to post. You may very well be 'low in range', causing symptoms, but doctors will ignore it until you're below range and half dead.
You are right to inject as much B12 as you need. I've had doctors say it's poison at high levels, i can overdose, all sorts of nonsense. Ignore them. You know what you need best and B12 is not toxic at any dose.
I think I need to be on a regular B12 injection and back on iron. At the moment I feel horrendous. I had one cider with my lunch (on holiday) and 2 hours later my heart is racing and I need to sleep. It doesn’t seem to knock anyone else about like this.
Have you seen a hematologist? I think I need shots every 2 weeks, though I’d originally been told every 1-3 months is typical. I work in a medical center & was fortunate enough to have access to specialists. The hematologist & gastroenterologists were the most knowledgeable. My GP acknowledges she didn’t have the training & referred me to them. Take care!!
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