Sounds like the reduction is not working for you at all as you're getting all the classic deficiency symptoms back.
I've been on 1.5mg per day for 9 years and it works for me but I know of at least a couple of people who need 3mg/day, every day. There are bound to others like yourself who need more.
If you need it, you need it.
Symptoms are your body's way of telling you something is wrong, so aim to stay symptom free. Equally, no symptoms suggests all's well.
PS you might need to start back with more than you were on before (4x) to get yourself over the current deficiency that you've caused yourself by reducing - but you then should be able to go back to that if that was working.
"If it ain't broke, don't fix it!" - do whatever works best for you. One size fits all treatments are not appropriate for a diverse population.
Eg to keep well, which actually equates to staying in blood test range, I need to take approx 24x the upper daily intake recommendation for vitamin D. I have other family members who are not directly connected (cousins who are not sisters, and another aunt) who also need way more vitamin D than recommended, so there must be an unusual gene in our family somewhere.
I have exactly the same concern after recently dropping the frequency of my injections, following advice. Most worrying for me is having "the sighs" back and the feeling of breathlessness but also troubled sleep is back, low mood and feeling tired. I keep thinking it's because X or Y but I'm considering going back to my EOD schedule too. It's only been two weeks for me so perhaps it's too soon for symptoms to come back. Good luck with whatever you decide 😘
I like the analogy’Feeling off course without a compass’. That’s how I feel at the moment, can’t seem to get motivated, feeling low mood, and generally ‘just off’. And I had such a good couple of days last week. So accept my sympathies. It feels like it’s been such a long time since I felt ‘normal’. I’m wondering if it’s my Vitamin D level. I’m waiting for the results of a test to check my levels. If it’s still low I am going to up my supplementation. ☹️
Apparently more than 50% of population are poor folic acid converters and it actually acts as a block apparently if you are a poor converter. My improvement has been down to using methyl folate instead. Back to 2/day B12 for a while - it’s early days but still heading in the right direction!
I was told I have a gene mutated that has I've read contraversy of weather it really affect people or not. but I found a multi vitamin that says folate only not folic acid that is made of fruit and food so it's natural so I take it every day. I'm still new with my injections. I tried folic acid and folinic acid tablets and felt totally out of control so I can't take them I even tried a 1/4 of the tablet but my body went crazy with it so I try to eat food and take the llama natural multi's they have all the B vitamins and d2 and d3. I spread them out throughout the day.
I do apologise for the delay, I have been rather poorly myself. Gently row my darling. Okay, you done a whoopsie (mistake) just get back on track with frequency again. See how you are after 3 weeks.
If after that time symptoms have not started to dissipate then maybe look at supplements that you have swapped. But one thing at a time or you will not establish Cause and Effect.
I am afraid I steer clear of advice with Diabetes. Simply because we had Specialist Diabetic Nurses to work alongside and that was in the Antenatal, IntraPartum and Postpartum period. Women’s bodies change greatly at these times. Interesting fact, our Jam Tarts’ rate increases, it’s vascular volume and output increase too. In the third trimester cardiac output is about 40-50% higher during.
That’s a lot of Ms Muscle and Power in just 1 organ.
Sorry to hear you have been unwell. Hope you bounce back quickly.
I think I listened to my body with my heart rather than my head and heard what I so WANT to hear ... I so WANT to be on few injections that I allowed my body to run before it can walk and I should have used my head and slowed its enthusiasm and reduced more slowly.
I am back to 3 x injections a day and things are improving and virtually all the niggles have gone. Still on the supplements too as they are giving good outcomes. Feeling more like myself again albeit a little more tired than I would like.
Yes, still rowing and at least now I have reset my compass!
Well I've been injecting EOD for 3 months and beginning 4th month. the day of no injection I've decided to do 1/2 ml instead of none.. I did it for a week and felt my back nerves totally more wake up symptoms and of course I thought because I'm starting to heal even more but I was having to be in bed most of the day of no injection.
I thought well let me try to see what happens. so after 4 days I started to feel stronger during the day after the nerves calmed down. but during the night especially on the day with 1/2 ml its like my anxiety and nerves start to come back in my back. I wonder today after my full injection I had the grandkids over and this eve I have a little more anxiety and nerve spark ups in my low back again but it's only in the eve.. I was reading your bio and I was wondering did the symptoms come back in the eve or night time when you decided to try an afternoon injection as well?I'm feeling better in the day so I think I'm doing more but still getting my rest and in the eve or night I kinda run out of b12 again. what are your thoughts on your recovery and increasing injections. I think I may be one that needs either 1 ml everyday and see if I need more than that.
thank you for sharing your story because now that I'm heading towards 61 years old and am having grandkids with me I need the extra b12.
hello again I have one more question so is your injections 1 ml in the syringe? so you were doing one ml 2 to 4 times per day? I am going to try maybe increasing my 1/2 ml to one full ml syringe for everyday.
Yes. I have 1ml of liquid (my cup of tea) in which I gave 1.5mg B12 that’s like 1.5 spoons of sugar. Some B12 is 1mg per 1ml liquid so a lower dose - less sugar in the tea!
I inject three times a day - so 3 x 1.5mg each day.
What are your symptoms to make you think of doing 1 full syringe a day. Not suggesting you don’t increase just interested to know how you are doing.
I hope you have got back on your normal injections and are feeling yourself again. you are always sooo cheerful , such a blessing to read your posts. Well my symptoms that are my worst are muscle nerve pain in my lower or mid back and fatigue and I will get panics at times but since I increased to inject on the off day of 1/2 ml my nerves woke up even more. but then they calmed down after a couple of days. but in the late evening the panics and nerve flare ups start again. I'm wondering if I need more and it's the beginning of the 4th month so I know i'm still having reversing out symptoms. those nerves in my back are kinda new and were very strong. I'm also doing more now so that's maybe me being impatient.
Oh yes and so is yours micrograms or milligrams of b12? I think mine is micrograms in the vile. 1 ml is 1000 micrograms for my injection.
Yes most likely my tiny units are scrambled! I am an engineer and used to Terra Giga and Mega units!
I inject 1.5 milligrams three times a day.
You my friend are not even on every other day injections as you only use half dose. So if you use the whole vial you will double your dose and be on every other day with what is considered the minimal dose.
I think your analysis of why you need more is spot on - feeling better and we do more= more B12 needed, more healing = more B12, more conversation= more B12, more thinking = more B12.
Before I found my optimal dose I experienced EXACTLY what you describe - I personally found the anxiety attacks hardest to handle as they were so out of character.
When you up your B12 I would also match an increase in cofactors - this is what I do and despite injecting so frequently they are all above mid range - bobbing around at the bottom of the co-factor barrel is not good place to be. Keep an eye on potassium too as mine dropped to very low levels.
Let us know how you get on as you seem to be smashing this! Yay!
thank you! so I take b vitamins with D3 in it as 4 gummies a day, my system is week to these still but I take them even though it's hard to tolerate also I take a liquid iron and drink potassium in pedialyte but I take them everyday, I will try to up them through out the day. My Dr. emailed me today, I asked her for enough b12 for everyday. she had me on enough for eod. so I will run out if I use a whole vile each day. so I may have to buy some on line. I live in the US, she also is having me referred to a hemotologist oncologist as she said she does not know how to treat PA so that will be maybe in a few weeks. I feel like my Lord is leading me to the Hemo /oncologist Dr. for a reason.
this anxiety is soo hard to cope with. I'm happy for you and your stories give everyone hope. lets see also in a few months I hope to be over that.
That’s good you are being referred but be very aware that there is every chance they won’t know much about your condition.
I find gummies hard to tolerate as pro rats there is a lot of “other” stuff in them. I buy pure Vit D and K from a company called British Supplements but should be a US equivalent.
The other thing I take is Reishi, Lions mane and turkey tail. You can get them from Nicole Apellian a Canadian lady go to her website her story and recovery is so inspiring.
Row your own boat JM if you get help along the way that’s a bonus!
oh my you would not be alive. yes I've been to this Dr. before and I was feeling like I was waisting his time and felt rushed out the door. back when I did not know what was wrong with me 4 yrs ago. then a few months ago when I thought I was just b12 D . but he is very busy with lots of cancer patients all lined up in his office. but my General Dr . said she know nothing about the PA so maybe he will check all my iron and ferratin, my general Dr said she will leave that all up to him. so I hope it will help. I've never had my ferratin checked. and maybe he can shed some lite on the gastric cancer since i'm curious about that too.
oh and these gummies are just from food and fruits from llama naturals no added sugar or any preservatives so real folate and vitamins but they are strong for me. I did buy some folic acid today and I'm nervous to try it. are those herbs that you take for and what kind of multi do you get? I will check out the person who you wrote about for the herbs.
lolol oh thats soo funny. I'm laughing.. well yes the methylated b12 and folate I'm learning make me have more anxiety. I thought I was going crazy when I tried the methylfolate and I just changed to cyano last month I was on the methyl b12 it made me have like a wired feeling. I know that they all work in the end result but they have side effects for different people's bodies. I feel way more calm on the cyano. in fact today I used some methyl b12 for my injection to use up of left over that I had and my brain is buzzing and humming all day so far. I want to give the rest away I feel. I had ordered plenty from b12store.com and I am going to ask them if they can exchange it for me to get cyano instead. I have not used it yet.
well my body feels everything I take like when I take my multi's I have nerve feeling all over like wake up symptoms in my nerves when I take them. I feel it in my brain too.
this is what I keep thinking as well, but I'm so wimpy at times but I still take them and just lay down when I have too. maybe with time it will get easier. but thank you for all your support
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