I found out my b12 was low after having neurological symptoms such as tingling and nerve pain. The doctor prescribed me neurobion shots 1 per week for four weeks. By the 4th week I was having full blown anxiety attacks, heart palpitations and vertigo. Neurobion also contains B6 and B1. I find drinking an electrolyte drink with potassium helps to calm the palpitations. I’ve been back to the doctor and they seem pretty clueless and just told me not to take anymore supplements and go for a cardiology appointment. Has anyone experienced this with B12 shots ?
Vertigo, heart palpitations after 4th... - Pernicious Anaemi...
Vertigo, heart palpitations after 4th shot of Neurobion.
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Louis2345
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How low was your B12 blood serum reading?
And where are you based in the world?
It was 149 and I currently live in the UAE, Dubai for work.
Recovery from both B12 and B1 deficiencies can result in a paradoxical reaction, i.e. you can get worse before you get better. B12 deficiency can create panic attacks and all sorts of neuropsychological problems. So it may be that you are healing and need to keep going.
Its also possible that you're being undertreated for B12. In the UK, everyone gets at least 6 Hydroxocobalamin injections every other day and then maintenance shots over months.
Potassium is good because some people experience hyperkalemia on shots.
I would push for more jabs. Now that you've started treatment you need to keep going with it.
You can't overdose on B1 and B12.
how often should I take a jab ? I’m curious as to which b12 they use in the U.K. and the dosage in the jab that they give every other day ? I believe Neurobion is 1000mcg of b12. Is that a lot to take in one hit ? Would a oral supplement not do the trick from here ? Thanks for your response
I think Neurobion uses Cyanocobalamin. In the UK we use a different form called Hydroxocobalamin. Its a DEPOT form which means it stays in the body for longer than usual.
Its always a minimum of 1,000mcg or 1mg when injected.
Frequency is the problems. One jab a week of Cyano is not enough. So your body is reacting from the lack of proper treatment. In the US, Cyano is usually prescribed every day for a week.
The key is to get levels high fast. Then oral can hold them there for healing. I think you need more frequent jabs and at least every other day for a few days.
Try to push the Doctor for more and a higher frequency.
I used to be on B12 injections but when the Covid pandemic happened my GP decided to switch me on to oral medication for my B 12. I had side effects from taking the oral medication so stopped asking them. Since the GP has not put me on any other B 12 Supplement. Surely this can’t be right as I keep suffering with various symptoms of which my GP is aware of but tends to ignore. The symptoms being irritable leg syndrome cold nose and weird shock like noises in my head of which are not pleasant what can I do any suggestions please.
It might be worth posting this again on the main board so that it goes out to all forum members.If you have diagnosed PA then your GP must continue giving you jabs. I think now that there's no more lockdowns they should be giving you regular injections.
You could consider self injection. But again, post your message to the whole forum and you'll get plenty of helpful replies.
Thank you but I am new to this site so not sure how to post on main board. I thought once you were on B12 injections you had to continue on them.
Look at the top right corner of the page and you should see a blue box that says ‘Write’, click on that then you can write your own post.
ok thanks. Is it a good idea to have my levels checked to see where my b12 is at now ?
I see. Are you medically trained as your knowledge is very good. I’ve not had much information this side of the world unfortunately
No not at all. So please don't take it as medical advice.
I had to treat myself so had to learn about it all very quickly. It's two years of self taught training and experience.
I always thought it would be great if they prescribed Neurobion in the UK for peripheral neuropathy but Id imagine it would only be effective once a base level of 6 Hydroxocobalamin shots are given.
Sadly, medics around the world don't know much about B12. So in this forum we are all subject to poor treatment and accusations of health anxiety. Self treatment ends up being the only way to get through it with a semblance of health left. Keep fighting the Doctors for what you need.
I can easily buy the shots myself here, most things are over the counter. I may do some research about giving myself some shots as the doctors here have driven me up the wall. I don’t want anti anxiety meds I want to sort the root cause!
Great. If its OTC for shots then go for it - you cant overdose B1 and B12 but you can have too much B6. So you may be better off if you can find Hydroxocobalamin shots.
I would do the research then - plenty of advice on this forum about self injection. Use Google to search for a topic next to the word healthunlocked. The search bar here isn't so great.
is it possible the b6 in the neurobion could have anything to do with these symptoms? I’m not that clued up about b6
Yes that's possible too. But it seems unlikely for a Doctor to prescribe it if it would have those effects.More likely that your body is trying to heal but just doesn't have enough juice to do it.
Neurobian might be methylcobalamin as the b12 source. Methylcobalamin is often lauded but it made me cuckoo for cocoa pops (No I am not medically trained, laughing) And I am not alone. It simply does not suit everyone. I didn't even sleep the night I first took that shot.
funny you mention that as when I’ve taken oral methylcobalamin in the past I felt rotten so stopped taking it. That’s how it made me feel after I had the second shot, I couldn’t sleep, heart pounding all night, I had to get my husband to drive me to the A&E the next morning as I was Having a panic attack. Of course all tests came back normal, but with each injection after that the symptoms have ramped up then calmed down as the days have gone on. I will say the original symptoms of nerve pain and tingling seems very much reduced. It’s like a whole new set of symptoms im dealing with including a sense of vertigo or being pulled to one side when I’m walking. I know I can buy b12 injections here I’m just very nervous about having more injections after all of these horrible side effects.
Some people feel no difference whatsoever between the different forms. I do and did. I have tried all forms in shots. And after what I described above, I avoided methylcobalamin no matter the supplementation choice.
Once I tried supplementing between shots with a cyanocobalamin spray. And all of a sudden I felt agitated and wired. I turned the bottle over and it was actually a combination spray and contained methylcobalamin as well.
But here is the thing. There are two distinct issues at hand. It is completely normal to feel worse and suddenly have new symptoms when starting out. So you need to try to figure out what is simply your body waking up again & what is possibly a specific adverse reaction to a certain form of b12.
I get cyanocobalamin shots because that is what is given here & I can afford it when I self-inject. And I have no adverse effects. However, when starting with loading doses at my doctor's office I had extreme changes between my second and third shot. It was like someone was tasering me every fifteen minutes. No exaggeration. I could not even sit down at times - I had to pace. That extreme. It lasted almost twenty-four hours and left as quickly as it came.
It is going to be hard to differentiate between these two distinct issues while on neurobion. I would want to isolate the b12 at first to at least get clarity on that issue before adding other components.
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Magnesium was a big help when I was experiencing new and adverse symptoms during loading doses.
All the best to you.
B6 gave me awful pins and needles. I didn’t realise at first that there was a ridiculously high dose in a supplement I took for thinning hair.
B6 can cause neurotoxicity but this is observed at 100mg. Some negative effects have been seen at 50mg. For this reason the safe upper limit for B6 was set to 25mg. Its possible to measure B6 as part of blood tests and IMO it might be best to use this to decide whether or not you need a lot of B6, I'm not a huge fan of supplementing blindly something which is toxic in excess, unless theres a clear signal from a blood test that justifies it. B6 supplementation at the RDA would be safe in the interim if information about adequate blood levels is not yet available to you.
I dont know how much B6 is in your neurobion shot but since its an injection worth bearing in mind the toxicity levels above are for oral, not injected B6. I'm hoping the doctor prescribed this shot based on a B12 and B6 test result, otherwise that makes me go hmmm.
There is 1mg B12, 100mg B1 and 100mg of B6 in Neurobion so it’s possibly the B6 that’s affecting you.
The “medically trained “ are not knowledgeable about B12 deficiency/Pernicious Anaemia.
You will find better information on the subject on this forum !!
look
These are great links -stichtingb12tekort.nl/engli...
stichtingb12tekort.nl/engli...
stichtingb12tekort.nl/engli...
All the best to you.
hi Louise … other co-factors are needed when on b12 …. Folic acid (5mg-I use methylated when taking my shots - I too self inject as uk doctors don’t have great knowledge or dismiss b12 if we fall in range but the Nice guidelines say to treat if patient symptomatic) Aldo you need to watch you have optimum vit D …. Which one may imagine you do in such sunny climate … but a check would be worth it. Look to the site here …. They are amazing …. If there’s something you don’t know make a post about it here … the knowledge here is amazing. I am a nurse and so hope I am knowledgeable but I learnt so much from these great people as b12 deficiency seems to be not considered if your results are in range yet patients respond with great results. Sorry to rant. The pernicious anaemia site too.
You may also see here that patients can feel worse as Pickle mentioned above. Good luck
thank you. Yes my vit D was also checked and it was on the border. You’d never guess that living here vitamin D deficiency is huge but I’m guessing it’s because when you live in the sun you mostly protect your skin by covering up and sunscreen. I was also low ferritin, border line for zinc and my folate was good. I have since been getting outside daily without sunscreen for at least 30 mins to boost the vitamin D. Hopefully it will help. It’s all quite scary how doctors are so clueless. I will have to do some research it seems and sort this out. I do not know if my low b12 has been caused by pernicious anaemia but I haven’t eaten meat/fish for a good 10 years. I used to take a supplement then after having my last child I just seemed to forget all about the importance of supplements. For the past 2 years I have been heavily into sports as well as breastfeeding a very hungry baby/toddler for a long time. I honestly think I’ve worn myself thin and used up my resources. Thanks again for all the advice.
your most welcome … maybe make a post to ask for other co factor advice as I’m thinking there are more … good luck
"I do not know if my low b12 has been caused by pernicious anaemia but I haven’t eaten meat/fish for a good 10 years. "
Yep, depending on the other animal products in the diet this can put you at risk of B12 deficiency unless you supplement. Without PA or gut absorption problems, something around 50mcg to 100mcg would generally be adequate as a single daily maintenance dosage (the required amount is much higher in case of a deficiency though). The more plant-based you go , IMO , the more you need to factor in several important nutrients that could be undersupplied. The eight main ones are B12, Vitamin D, Omega3 EPA/DHA, Iodine, Selenium, Calcium, Zinc and Iron. Not all of them would necessarily need supplementing but to be safe you should have a fair idea of whether you getting sufficient amounts as it is unlikely to happen by accident e.g. Iodine or B12 have very specific sources.
Have you had your thyroid levels checked. Issues there can exacerbate absorption of needed nutrients.
Yes the results were 3.03 - within range according to the doctor but I have read online that optimal is less than 2.5 ?
So the doctor also gave me Neurobion in tablet form to take for one month I haven’t taken any yet but just had a look at the side effects. It says that the b1 in it can cause a lot of symptoms. I’m 4 days post last injection of this so hopefully it will calm down. Then I’m going to get back on b12 only
Neurobion side effects
hi, get your potassium levels checked as being on b12 can lower the potassium in the body and cause awful symptoms… eat foods rich in potassium until you get checked out
For Potassium, some of the best food sources include Beans, Lentils, Spinach, Avocado. Sources like Coconut Water or Bananas are convenient and can contribute too although they do not provide quite as much potassium as the other sources.
List on Nutrient Calculator: nutrients.food-nutrients-ca...
m.youtube.com/watch?v=6j4Qf...
More Potassium info : hsph.harvard.edu/nutritions...
pretty certain they are being affected somehow as I’ve been drinking coconut water to calm the racing heart. When this all kicked off in Jan 4th I had a potassium test which came back normal. Even before I took the shots i was having heart palpitations probably due to me being low in b12 and coconut water helped then too. So I’m not sure what’s going on but I have read that b12 is important for the movement of potassium and magnesium into the cells. Is it possible I can show ok levels in the blood but it isn’t getting into my cells properly? Argh it’s a minefield!
I’m not sure about what the levels should be at but you can be damn sure they have the them set low as they do with the b12! It may just be a case that you need to get your levels up and also the other B vitamins need to be at an optimal level as do iron, ferritin etc, I had awful palps myself that recifirafter an iron infusion (I was very low)
As I understand it, there are two separate regimen of B12 treatment, for the two populations of patients with B12 deficiency. One population is people who have hematologic symptoms (anemia), which can be diagnosed through the results of blood tests. Doctors tend to be aware of this symptom population, and if a doctor knows a treatment for B12 deficiency, this is the one that is known. Recommended treatment is something like this: daily injections for a week, weekly injections for a month, then monthly injections. The second population is patients with neurological symptoms: psychiatric symptoms such as irritability, depression, and psychosis; and neuropsychological symptoms such as tingling extremities, loss of sensation in the extremities, inability to think of words in conversations, and spinal cord degeneration, resulting in loss of proprioception (balance, etc). Recommended treatment for this population is something like B12 injections twice a week, until there is no more improvement in symptoms, then less often.
A couple of important things that doctors often don't know is that B12 is not toxic at any level, and B12 blood tests are irrelevant for a patient who is injecting B12.
so the higher dose of b1 can cause the potassium to go low. B1 also requires magnesium or you will start getting cramps after about a month or so.
I also think just sticking to the b12 is the best for you right now. why add other things that can cause other problems in the mix. As you have concluded, one thing at a time is best esp if they haven't given any definitive reason for the b1 and b6. I high dose on b1 but that's again, because I am deficient in that and didn't start that until I had done the b12 for about 1.5 years.
I had heart palpitations when I was low on b12. They resolved after 6+ months of supplementation; however, that may be because I am a meat eater but just simply don't metabolize the b12 orally. In your situation it might not take so long.
Best of luck!
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