Pernicious Anaemia Society

Why does B12 now make me really ill

I used to have B12 all the time, and felt really healthy, now when my PA symptoms return and I go back on my injections, I get really bad, side effects. It is making me feel that it is just too dangerous to self inject. I only started doing it because my PA symptoms kept coming back really badly and my GP took me off injections and nothing else worked. I feel like some sort of dodgy junkie for doing it (which I am definately not) just beyond desperate to feel better. What can I do?

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Hi Hayley31 I wonder if you might be better off injecting B12 on a more regular and continuous basis rather than going for long periods without and then giving yourself a massive boost.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

Do you supplement with folic acid?

I'm not a medically trained person but have had P.A. (a form of B12 deficiency) for 46 years and have injections of cyanocobamalin B12 1mg every three weeks.

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Thank you so much CliveAlive. I'm in such a state of anxiety over all of this and so physically unwell at the moment. I know that when I had B12 regularly I felt great, it's been since I've been yo yo ing on and off it that I've had these really bad problems (due to the fact that I wait until I'm desperate before having B12 as I became scared to inject). I am now going to go back to having it every other day until I feel better, and expect to feel worse before I feel better. I do also take folic acid.

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Keep a diary of symptoms and when they start to return. You need to inject “before” symptoms start to return, however little the symptoms.

Sounds like you need more frequent injections on a regular basis. B12 injections are not dangerous and u can’t overdose as they’re water soluble and body gets rid of excess through urine.. You can at least give it a try. It might be due to the long period in between injections.

What side effects r u getting ?

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Thank you. That makes so much sense. I am going to go back to having it regularly for at least the next few months, possibly over the next year. I NEVER want to have to go through all of this again. I get head pressure, dizziness, heart arythmias, anxiety and today I have had chest pain which terrified me.

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When u say “all the time”.....how often did u used to have them ?...how often r u injecting now ?

Have u changed to a different type of B12 or a different brand than what u used to have previously ?

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I used to have them every other day. I didn't change the brand, but I'm wondering if they changed the composition of the B12 I was using. I buy it from Goldpharma - hydroxycobalamin, the one in the white box.

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I doubt they’ve made changes to the formula. I think you should inject according to your symptoms. You’ve been injecting before so you must have some idea of the frequency you need.

Good luck....Wish you well.

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Thanks. I'm going to keep on with every other day now until I feel better. It is helping although I still feel awful at the moment, it seems to be getting better not worse thank God.

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Thanks Ryaan. I have now started to self inject every two weeks, my really bad symptoms have greatly reduced, I think it is a case of spacing the injections out a bit more to begin with rather than waiting until I'm really ill with B12 deficiency then bombarding it with injections over the space of a few days. I may continue to inject every two weeks for now, or I may bring it forward to once a week. I do however still have a lot of B12 deficiency symptoms and don't feel as well as a normal person would, and I do still have some chest discomfort/heart palpitations but nowhere near like before....that scares me....I did go to my GP at the beginning of the year and explained what I was doing and why. He said he understood why I was doing it, it's not what they would advise, but he didn't seem to concerned it was more a case of if you feel it's the only thing that helps I can't tell you not to do it. I even showed him the B12 I was injecting and he said it seemed kosher. I had another blood test as obviously I was really concerned incase it was an electrolyte imbalance or a pottasium deficiency as the symptoms I get when I first go back on B12 are similar to what I've read about that....or it could just be that I am waiting too long between injections then giving myself way too much all at once and then my body has to go through a LOT of healing. I'm going to continue weekly or fortnightly for a while, I'm nowhere near out of the woods yet...but at least this is something I can try to see if it helps.

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Np, nice to hear you feel better.

You can try weekly if you want and see if it suits you, if not 2 weekly is fine, you can continue until you feel there is no further improvement. It dose take at least 12-16 weeks before you notice quite a difference. Also good to take Folic Acid daily recommendatio 400ug which is small amount but enough, you can check with gp or pharmacist.

Also good to know your Iron and Vit D is at good level.

Have a good diet also and you’ll soon start feeling much better soon.

If you can....take a daily walk will help greatly.

😊

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Thanks Ryaan...you have been so helpful....I think I will continue every week for the next 12-16 weeks and see how I go to see if I need to bring it forward, or push it back. I also now only inject half a syringe full....it's bringing the B12 back into my body gradually. I think it was the long wait between jabs then the massive load up that was causing me all the grief. I just hope that the chest pain doesn't come back on one weekly. I just want my life back :(

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It's been literally 5 days since my last injection and I already feel like I'm gasping for B12...all my symptoms have come back. I'm going to bring it forward to weekly and have one at the weekend.

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Hayley- you need to take a deep breath- you now have three posts asking pretty much the same question and suggestions on all of them

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

are you still doing it as loading doses each time - would be better to do as maintenance and then leave a little while until the symptoms start reaturning

have you been tested for auto-immune hypothyroidism - symptoms overlap and about 40% of people with PA will go on to develop hashimotos

ncbi.nlm.nih.gov/pmc/articl...

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B12 isn't toxic.

Some people do find they respond to doses by feeling tired/dizzy or developing acne for a day or two. Possible that this could be because a couple of processes temporarily go into overdrive as a result of the large dose in a B12 shot.

It might be that lower dose would work better for you - or even trying high dose oral to maintain levels.

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Thanks Gambit. You've been an absolute godsend. I've been in such an extreme state of high anxiety with all of this lately. I still feel awful, but have decided to go back to injections every other day. I have had my thyroid checked, they say it's fine. I think it's all been because I'm on them and off them. I have sort of loading doses 2 or three times a year (and each time I've been getting into this state, however this is the worst yet), I go through this, then have more then feel better, then stop injecting until the symptoms come back and I'm desperate, because I became scared of it. This is probably where I'm going wrong, not being consistent.

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Hi,

Perhaps it would be worth talking to PAS (Pernicious Anaemia Society)?

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

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Thanks. I have talked to them before and they are helpful. :)

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Hi,

I've been getting B12 shots, once a month for the past year and I have felt wonderful. Unfortunately, I started having a reaction to my B12 shot in September. My face turned bright red and I had a terrible headache. My stomach also hurt really badly. The worst reaction was insomnia for almost a week. After my October injection I had the same reaction so I went back to my GP. He told me it is impossible to have a reaction to a B12 shot. Well something is happening immediately after I get a shot and it's not good. I did a little online research and i found a doctor who said that, while it rare, some people to have reactions like mine to B12 shots but they symptoms are treatable with antihystimines. I took a Benadryl before my November shot and I didn't get the immediate headache I had gotten from my October injection. I continued to take benadryl for the next two days and most of my symptoms seemed to be gone but the benadryl makes me very sleepy so I didn't take it the third day because I had a busy day at work and didn't want to be sleepy. The reactions came back so I continued to take Benadryl for the next few days. Probably 5 days in all. I was fine after that. I have made an appointment with an allergist to see if he can help me with this problem since my GP was not very much help. I hope my story is of some help to you.

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You should be supplementing with 5mg folic acid daily and eating a potassium rich diet if you're having B12 injections. If you don't do these two things, that could very well be why you feel unwell. You can buy folic acid really cheaply from versandapo.de. B12 injections can also lower your iron levels, so get that checked too.

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I still feel horrible. I had about 14 injections (every other day) in December....but feel worse and not better, actually have chest pain to the point where I have considered going to A & E. Reluctant to inject any more, shall I leave it for a few weeks to see if it levels out in my body then try to gage how often I need it. It's so horrible to be going through this without medical advice.

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