Looking for some advice as I begin this journey. I am currently in the middle of my loading doses at my GP. Whilst I havent noticed huge changes yet (very early days) I do already feel just a bit more ‘human’ if that makes sense. I am trying to work out what is best for me going forward. I have ordered everything I need to self inject at home, but I am unsure how often I need to do this. I wouldn’t describe my symptoms as extreme compared to what I have read of the suffering of others. I generally feel like I have a bad cold - run down, tired, a sinus type pressure headache, and I have some light tingling in my hands and toes. I know the protocol for neurological is every other day injections. I am a member of the Facebook group and they don’t seem to deviate from this advice at all and apply it to every case. But my question is - surely we are all different? Does everybody need EOD injections? Or have some people seen positive results with twice weekly/weekly/fortnightly? I guess I am wondering whether, seen as my symptoms are not severe and this was diagnosed early, do I need to jump in to EOD. Any advice or experience would be much appreciated whilst I try to navigate this crazy minefield!
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Pinkxe
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I would tend to do EOD if you still have symptoms when you have finished your loading doses . Then when the symptoms are gone , try once a week , and if symptoms don’t start to return in that time, try one every two weeks, and so on in the same fashion . Then you will soon find out by trial and error how often you need to inject to keep symptoms at bay .
There can be no rules about this .We are all different. It’s good to know that B12 cannot be overdosed though . A 400mcg daily folic acid tablet is advisable, as it works together with B12 .
Thanks so much. I think you are right, I just wasn’t sure whether every other day would be necessary but probably best to err on the side of caution. The folic acid thing I am still trying to work out as everyone says differently how much to take!
Hi Pinkxe, you are right in that everyone of us is different and this is a crazy minefield! So you're on the right track! 😊
I can best answer by telling a personal story. In early 2020 I was hardly able to walk, balance issues, severe fatigue slurred speech, chronic severe dry cough, BUT at this time I had zero peripheral neuropathy (PN). I was diagnosed with severe B12 def at 70 pmol/L. I was put on weekly 1000 mcg B12 injections. After a few weeks I was feeling better and after a few months I felt back to my old self, I thought. All the while continuing with weekly injections. Then at about 4 or five months I started getting moments of tingling on the right side of my tongue, lower jaw, and right hand. They would only last a few minutes. Here I was referred to a neurologist. Well, before I made it to my neurologist appointment, one day the entire right side of my body from the top of my head, the right side of my torso, down to my right foot went completely numb. Very scary to say the least. The point being that although I was receiving weekly B12 injections, until the myelin sheath was fully healed the nerve damage was continuing. I had MRIs, MRAs, poked every which way to Sunday and they found nothing but here is where I was diagnosed with PA and my B12 dose was changed from 1000mcg to 2000mcg but still weekly. It took over a year to recover,which I have, but now I have some residual permanent nerve damage in my right foot and hand. But I can walk, talk, and chew gum, and I also hike.
So why the story? Well depending on the severity of B12 deficiency it takes some time, in my case, months to just get your serum B12 levels up. My B12 at month 3 was only 189 pmol/L up from 70 so I thought great. I was woefully wrong and ignorant of the whole subject. 189pmol/L is still severely low. When you're first starting out on B12 therapy think of your body (every cell) as a sponge. Just absorbing all the B12 that you put in until they all get there thirsty drink full. Then there is the myelin sheath the protective covering on your nerves that is damaged. Again, depending on the severity of B12 def it can take months for this sheath to repair itself and in-fact the progressive damage, as shown in my case, continues for a period even after you start injecting. In other words, as we all know, all is not fixed with one or two injections.
Personally if I had it to do over again, with the knowledge I have now, I would have done EOD and continued for several months after my symptoms appeared to resolve.
I know once you start injecting it is no good to keep testing serum B12 levels since once you reach a maintenance stride the results will be high or most likely pegged at the upper limits that the test can read. BUT I do think there is a case for a prudent individual to have their B12 tested monthly for a few months while first starting to verify your serum B12 levels are rising appropriately. My 189pmol/L should have raised red flags if I had known better. Then we at least could have upped my dose and maybe started EOD or even every day.
Wow, thanks so much for taking the time to send me such a detailed reply and share your experiences. It’s such a hard thing to navigate when you don’t know anyone else with the same thing! That makes a lot of sense and is definitely helpful. I’m booked to see a private consultant in London in two weeks, I finish my loading doses on Wednesday and then I think I will bite the bullet and start self injecting every other day. I hope you are doing well.
There are many ways to be deficient. There are many people who think they have your answer: truth is , they don't.
There is no set folate amount. If you are low in folate, your GP should recognise this early on, monitor this and help you to get this under control at more efficient levels (if that is what you need) by supplementing. It can take a while to get stabilised at an optimal level, BUT it needs to be said that this is an individual pathway, and you will not find an all-encompassing answer.
The same will be true of ferritin, or vitamin D, or thyroid. Or any of your specific symptoms.
We are all different, and starting serum B12 levels do not mean much: symptoms can be mild, severe, frequent or difficult to predict - at almost any level, it seems. So some feel better after their initial 6 loading injections, and for some, it can take years to feel any better. this can be a concern: how do you know that you are on the right track and nothing "more serious" has been missed ? For example, it can honestly feel as if we are being treated for some trivial tiredness, when we can are no longer able to walk properly.
Anyone who feels able to give formulaic answers to this problem has misunderstood the complexity of B12 deficiency. Please read a few days of posts here and you will find that none of us are the same.
If this was easy, we would not need this forum. We absolutely do.
It took about three months of B12 injections being administered twice a week before I even felt the injections I was given. I no longer had to ask whether they'd been done yet. This was my first sign of progress, almost two years after first going to the GP, and about a year after B12 loading injections were first started.
No, not everyone needs EOD B12 injections, or folate or ferritin supplements. It really helped me to log my daily symptoms, so that I could see if there was a pattern to improvements. I tried - and eventually, after about 7 years, stopped trying to find that pattern.
I now try to self inject at a frequency that will best control the symptoms that I have- although this is changeable in a fairly unpredictable way. Sometimes a two-day gap is okay, sometimes three. Never four. So far ..... but also never able to truly control or manage symptoms entirely. Some have stayed, some have gone, some come and go.
None are cured.
But that's just me and you are you. I'd be encouraged by the fact that you feel a bit more human, mid-loading. That is a good result. Make sure a supportive GP is on hand to monitor folate, ferritin, vitamin D and thyroid - (not B12: no point !) - so that you are able to supplement/stop when advised. This can take a while to stabilise.
Good luck. Keep in touch and ask anything - good people here.
so are you injecting EOD now, and in the beginning of your symptoms during the 4 to 5 months was is so bad that you could not get a round to do daily activities ? if so i'm so happy for your full recovery that will give me hope, I feel my feet getting more sore now that I'm entering into my third month of EOD injections.
I would strongly suggest at least every other day until you get rid of all of your symptoms. The tingling you feel is indicative of nerve damage. Then experiment to see how long you can go without symptoms returning. People seem to vary a lot with this. I get tingly toes in 3 weeks so I get my husband to give me an injection once per week.
Hi -I self inject using an auto injector which was the only way I felt able to embark on this. I know the protocol is EOD but I was a bit worried about doing this in spite of all the advice that you can’t have too much B12. I have been injecting once a week. Whenever I had one of the 12 weekly injections my pins and needles would go crazy a few days afterwards and I was advised by a PA group that this showed I was being under treated. Asked for more frequent injections but could only get 10 weekly so started self injecting. I have experienced a huge reduction in pins and needles, but at the moment I am wondering whether I should actually start again following the EOD protocol. After an NHS injection last week, in spite of my own weekly subcutaneous injections, I have had burning and pins and needles again. Like you, I wouldn’t say it’s terrible, but definitely could do without it! I also have tinnitus which has got worse - another reason why I’m thinking of starting EOD.(Don’t know if it’s B12 or a thyroid issue). I have made sure to take folic acid and B complex. It’s such a puzzle! So I suppose what I’m saying is maybe I should have followed the EOD protocol to start with …
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