I’ve been SI EOD / ED for six months due to severe neurological problems when my B12 dropped post surgery and my injections were late due to the pandemic. After initially getting worse, these are much improved - I’m just very fatigued and unwell post covid. So it’s hard to tell what’s what!
I’m now wondering how / should one reduce injections to find the right frequency for them going forward? My NHS jabs are six weekly (one every six weeks) but this is not enough.
Thank you.
If you have neurological symptoms, and there are many that at first glance you wouldn't think are classed neurological or neuropsychiatric - see here for a good overview b12deficiency.info/signs-an... - I would not cut down yet.
If you're ok there and "only" have fatigue, I personally might still wait another few months and see how things go. You might also consider other health issues like thyroid. If we have one autoimmune disease we tend to have others. Also consider nutritional issues like low iron or vitamin D.
I'm sorry you're unwell post covid. Since so many of us have had to increase jabs during or after covid, it might be too early to reduce just yet. Or maybe it affected nutrients so an iron and vit D test might be useful. Technoid has an interesting list of additional nutritional support. I haven't tried all of them myself, but something in there might help you. Vit C and zinc are sometimes useful for covid.
If you share what you mean by you're feeling unwell, others might have more specific suggestions. Covid is also known to trigger diseases like type I diabetes - not to scare you or anything - but a symptoms list would be helpful.
Anyway if that's all ok too, reduce very slowly. To me that means going every 3 days and hold for a month or more, and keep a symptoms. If everything's fine, drop to 4 days a week and again hold for a month. Symptoms can creep up on us slowly so it's important to give yourself some time before dropping again. Others may suggest a different scheme but whatever you do, keep a log so you can catch any issues early.
That is a great symptoms site jade_s. Thanks so much for sharing. It will be my new go to page to send to people who I think may have B12D.
Full discloure - I found one of her blog posts from 2020 or 2021 completely unscientific and conspiratorial, so I stopped visiting and sharing her page for a while. But she is a wealth of information on B12D and the B12 related info is all accurate and backed by science as far as I can tell. And it's the most comprehensive site by far.
Thank you that’s so helpful. Looking at that list I’m not out of the woods yet so I’ll stay ‘as is’ a while longer. I’ve just checked all nutrient levels thyroid etc and they’re okay. My symptoms from covid are persistent sore throat, cough, fatigue, swollen lymph - 12 weeks so far!
I'm sorry that sounds tough. It's almost like you're still dealing with the virus. 
Have you checked with your doctor that a bacterial infection hasn't taken hold? Pre- thyroid & b12 every single cold I'd get would turn into a bacterial infection.
That’s interesting. I went to out of hours doctor today as i couldn’t swallow but they refused to swab me so I’ll ask my GP in the week.
Good morning MrsTuft, So if I understand right, you get six jabs a week, and you feel that is not enough, right? are you on cyano or hydroxo? I'm only on my 6th month in as well, and I still have symptoms, like fatigue, can't catch breath, muscle weakness and soreness. Some days I feel like ED SI is not enough and I have jabbed twice a day sometimes. I'm on cyano, and I think I could feel better so I ordered Hydroxo. I am hoping that is better for me. So if you feel like 6 days a week is not enough, I would not cut back, and even SI that 7th day.
They say we need to give it more time. 6 months isn't that long. Some people have SI'd for years and still have symptoms. I am almost thinking mine won't get much better. However, I felt great after I accidentally took all that methyl a few weeks back. That kind of makes me feel I need more or better B12. Hence the hydroxo. I never really received my proper loading doses (1xweekly x 3weeks = only 3 injections) and I feel that the mega dose of methyl kind of gave myself a big boost of B12, like the loading doses were supposed to do. It really did make my symptoms turn a big corner. That is why I think cyano is too weak for me or I need more. So perhaps you do too. Perhaps, you could ask your doctor for another loading dose? Or just SI more often to see how that goes. But I agree with Jade_s, I would not cut back. Although I can see why your curious. I forgot just how bad I had been feeling and I kind if needed to get perspective on it so I could appreciate how good I actually was feeling compared to 6 months ago or even 3 months ago. So I tested myself a couple of times to see where my symptoms were. They worsened within 36 hours. I don't know why but some days I just feel better than others. No rhyme or reason. I just wake up feeling better or worse.
Anyway, good luck.
I love your name. It reminds me of Mrs. Fitz on the Outlander series. She was the castle cook and a jolly lady and everyone loved her. 😉
Thank you. No my NHS jabs are once every six weeks. I SI ED. Six months in like you. Better than I was but not well enough and no rhyme no reason for it. So it’s comforting to hear from you. I’ll stay as is for now then. Especially as covid has knocked me back.
were you having methyl injections or supplements?
Right now I do cyano ED. But I have hydroxo on the way. But I have also had methyl.
It was methyl injections. a little hard on my system. But also saw a big improvement. I can't get methyl safely in the US anymore .
Hey Mrs Tuft
I had Covid at the end of September and tested positive for three whole weeks. I still feel pretty awful most of the time with fatigue that makes the simplest task feels like an attempt on Everest.
I don’t think we should underestimate the affect of Covid on those of us with underlying health issues.
My doc won’t budge from a jab every twelve weeks and it’s far from adequate. Reading some of your replies has made me consider giving myself a loading dose again in the hope it will buck me up. I hope you feel better very soon, Covid sucks big time and I’m now hesitant to go out again x
Aw bless you thanks for your kind reply. Yes it does hone the mind. I was reluctant to SI but it’s the best thing I’ve ever done. X
Another great intervention Jade. Excellent link and amazed by the group knowledge.
How can we make all this less invisible?
I wrote an email to B12 Society yesterday which I never knew existed, asking how we might survive with all the threats of costs and supplies and doctor resistance to jabs increase and if this was being pointed out outside the echo chamber we are stuck in
They have replied that they feel passionate about this issue, that there is something they call a Round Table at Westminster in February when this on the agenda and that it takes a long time.
I’ll say.
Any ideas for speeding awareness up?
It’s not easy when we expend most of our precious energy trying to keep ourselves alive.
Wish I knew. I agree about lack of energy... difficult to do advocacy when we're barely surviving. Catch 22!
There are people trying .... The PAS, Tracey Witty, Sally Pacholok, Stichting B12 to name a few I remember. There have been several B12 conferences. There is a new B12 research group but I don't think they're online yet. September was B12 Awareness week but I totally forgot about it.
b12awareness.org/2022/08/31...
what is the B12 Society?
EllaNore made lovely cards that you can distribute. Hey EllaNore if you don't mind, maybe I can put it on the supplies webpage so people can find it back more easily? 
Let me know.
That would be great jade_s. thank you! What do you need from me? If B12 health spas are allowed to dole out 58 injections in a 90 day period to one person, why aren't doctors given this leeway. I called a health spa and that is what they quoted me. At $30 a jab. There is nothing stopping anyone off the streets from getting 58 injections in 90 days and then going to another spa to get the rest. No one is keeping tabs on how many health spas they go to and how many jabs they get. Why don't doctors have this information and this freedom?
In my opinion, I would not back off. I am 2 years in now since diagnosis and still do every day self injections. At 6 months, I did the same thing... I tried to back off because of all the docs suggesting I should/could, but it didn't work. I just ended up getting depleted.
Like B12life I also inject daily, for almost 3 years now. I haven't had any luck reducing frequency and have had to accept I may always need daily injections, like several of us here. I certainly wouldn't worry about increasing frequency if it helps; I know people even without B12 deficiency who get injections once a month or more. Best of luck to you. ❤️
It’s so interesting. I went from not having any jabs. To years of ill health. To discovering that B12 jabs once every 6-8 weeks stopped most of the neuro symptoms I was having (migraines fatigue and foot drop) (but I was never give loading doses). To falling off a B12 cliff into neurological hell after major Gynae surgery. Now I’m on daily injections six months and as you say I wonder if I’ll be able to ever do less. And maybe it doesn’t matter. It’s comforting knowing others just keep doing it too. And with all the fuss doctors make and it’s a vitamin. It’s not like we’re injecting crack! I’m glad I SI. I’d be in a wheelchair if I didn’t. I can walk unaided now but not very far and I’m still very tired . My migraines got worse on loading - I think they’re lifting. I’m hopeful. I’d be better if I’d not had covid. I used to be on these forums and hear people injected daily and think WTF and now I’m one of them!
I misread your initial post and didn't realize you were also injecting daily. deniseinmilden injects 1500 mcg daily and has for years, so going up in dosage is also an option. There are other users who find that they feel best SI twice daily. Finding this forum & learning that daily injections were an option changed my life. I'm so glad you're feeling so much better. I agree, there are far more toxic medications we could be dependent upon!
B12 Lives Matter!!! What if we all wrote letters stating how often we inject and what our lives are like if we don't. We could all have copies of everyone's letters and we could take them to the supreme court or the CDC, if we have to, but we can show our doctors, this huge stack of letters from all the PA/B12D patients that THEY THINK are going by their silly 1x a month jabs, but are actually SI'ing, ED, EOD, Biweekly, triweekly, twice daily, etc. We need to show everyone how many of us there are. We need to change this. Why can't we all arrange a sit-in or a walk-out or a picket line in front of what ever place we need to listen to us? We need to do something!! there is power in numbers. Instead of letters, maybe a form that we all sign stating how many times a day, week, month, we inject. But, a letter in our own words would be so powerful. Maybe we could write these letter and find the most powerful place to send them and I will do it. I just need everyone's letters and the proper place. I don't know, but we will get nowhere if we just talk about it here and nowhere else. If we can vote, we can change this too. There is no reason someone can inject dangerous insulin everyday, but we can't inject B12. There is no reason that a person off the street, can walk into a health spa and pay $30 a jab x58 jabs in a 90 day period and it is legal and no one is telling them it is too much. Why can't we? I am willing to do whatever if anyone wants to help me.
How frequently do you get B12 injections?
NHS surgery website video - how to do your own B12 injections 
Frequency of injections
Self Injecting - Do you tell your GP/Nurse?
Hydroxocobalamin injection frequency
