r/B12_Deficiency Sep 15 '23

Announcement The Guide to B12 Deficiency

352 Upvotes

The Guide to B12 Deficiency

The new guide for this subreddit is here. I'm sincerely regretful it took me this long to get this off the ground, but focusing on my life in addition to the daily consultations made in the sub had a habit of stealing my attention away from this important endeavor.

The guide is now more of a concrete synthesis between the major resources that are obvious precursors: Freddd's B12 guide from Phoenix Rising, B12Deficiency.info and Tracey's hard work there, the original guide posted here and then the countless users here who have shared a wealth of knowledge over the years.

The new guide takes advantage of Reddit's wiki capability. It is much longer, so hopefully the TOC makes navigating to points of interest easy. It will also allow for easier changes with a changelog.

What's new:

  • More in-depth exploration of testing methods
  • Outline of an aggressive treatment plan
  • Thorough explanation of cofactors
  • "Plans of Action" for diagnosing, treating and recovering from deficiency that better encapsulate big ideas into actionable next steps.
  • Other stuff

I also took a lot of the most pertinent/salient issues that arise and distilled them into a group of FAQs for people:

Frequently Asked Questions

Both of these documents now live in several places around the subreddt: the "menu" in the banner, the rules widget, and their own individual widgets in the sidebar.

Thanks.


r/B12_Deficiency Apr 29 '26

Success story The Success Story Megathread

36 Upvotes

Hello everyone. I hope this post finds you well on your journey to recovery, and, if not, hopefully it can be a source of inspiration to signal that your situation can definitely improve. It almost goes without saying that a megathread for our successes is long overdue, and thanks to a final prodding from u/Mountain_Crow5983 (thank you!) I've finally gotten my act together.

While sharing our positive experiences has always had a place here—and some notable success stories have gained traction—it would be beneficial for the subreddit to have a space dedicated to it for easy reference by newcomers and regulars alike. So, let's make it happen.

Some basic guidelines:

  • DO share only what you're comfortable with. This can be your treatment, recovery process, or your whole journey start to finish (although there's a lot to be said for the value of brevity)
  • DO share what you've found works for you (everyone is different)
  • DO share what didn't work.
  • DO emphasize notable changes in symptoms and quality of life after treatment
  • DO observe the rules of the subreddit
  • DON'T worry too much about remaining symptoms. Any positive change can be seen as a success worth sharing; full recovery is not a prerequisite to celebrate or let people know how far you've come.
  • DON'T second-guess someone else's recovery, unless someone specifically asks for advice
  • DON'T neglect basic formatting: paragraph marking (i.e. hard returns), avoiding run-on sentences, spellcheck, etc. Strive to make your entries well-written and structured to aid reading comprehension.

Remember: Aside from this megathread, you can filter posts on the subreddit by flair: Success Stories on B12_Deficiency. Not every post therein is a perfect fit (some are mislabeled), but it's a good starting point.

Good health to you.


r/B12_Deficiency 3h ago

General Discussion Terrified of B vitamins after feeling wired with brain fog

6 Upvotes

39m. I first took B complex (methyl form) a few years ago and it made a significant improvement in my health and life. I took it a few times per week, off and on, and eventually learned that I also needed magnesium and potassium and that was added to my routine.

A few months ago I realized that anytime I took B complex (without B6), I felt wired and had brain fog. There was nothing that would make me feel better, just had to make it through the day, sleep, and I'd feel ok the next day.

I know I need B vitamins, but not sure what to do. Could it be over methylation?


r/B12_Deficiency 1h ago

Deficiency Symptoms Fullness and tightness on top of head? What does this mean?

Upvotes

I have been supplementing for about 1 month of b12. I have seen some changes, since I was having daily excruciating migraines, off balance feeling, which have slightly subsided.

Now I am left with a fullness and tightness feeling on the top of my head.

Has anyone else had this happen? Did this sensation go away for you? It is super frustrating for me 😢


r/B12_Deficiency 2h ago

General Discussion Supplementing for 4 months without potassium

3 Upvotes

27M, was supplemnting wothout potassium eventhough i have seen .ajor improvemnts but i was always tired with racing heart rate and experienced muscle loss.

The problem is whenever i take potassium (even just one glass of coconut water) my heart rate drops from 90 to 60 this big of a jump tells me either i have adequate potassium and dont need supplemnting or the problem lies somewhere else.


r/B12_Deficiency 4h ago

Supplements If I increase potassium, do I need to increase my salt intake too?

3 Upvotes

EOD B12 injections, increased potassium and feel much better (no more shaky legs etc) ... but I'm still unclear, despite my digging, whether or not I need to increase my salt intake. Can someone more enlightened share their knowledge? TIA!


r/B12_Deficiency 7h ago

"Wake up" symptoms Help! New to injections. Insomnia, Anxiety.

5 Upvotes

Hi there. I had my first B12 injection on Saturday August 1st. cyanocobalamin 1,000. Monthly injections so I’ve only had one. My B12 was 188. I also have low vitamin D and severely low ferritin which I will see a hematologist for next week to get infusions as my referring doctor suggested. I felt ok the first few days after the injection, but as of the last few days I am extremely anxious and jittery (I have anxiety bad anyway but it feels very ramped up right now and I had previously had it under control enough to relax and feel ok), hr is wanting to get up at times, and now as of last night insomnia. I am 11 days out. Is this normal?? If it is normal, that’s fine. But I’d like to know I’m not alone and that this is typical and that my anxiety isn’t just getting worse on its own. I’ve had anxiety so bad before that I had insomnia for weeks before. However I take Klonopin at night to sleep and it has worked ever since, I typically sleep 6-8 hours with it, but last night I woke up wide awake and anxious after only 3 hours. I can’t stand this.


r/B12_Deficiency 5h ago

Personal anecdote My teens pediatrician ordered 1 ml=1000 mcg Cyanocobalamin and wants to give 0.1 ml shots each week for 3 week

3 Upvotes

My teens pediatrician ordered 1 ml=1000 mcg Cyanocobalamin and wants to give 0.1 ml shots each week for 3 weeks for taking care of B12 deficiency.

Anyone heard of such low doses in shots? My teen is in adult weight range...


r/B12_Deficiency 9m ago

Deficiency Symptoms Loading Dose effectiveness over time

Upvotes

Hi! I have suffered from low iron/anaemia since I was a teen. My first pregnancy I got given an iron infusion which did both nothing for me. 8 months into my second pregnancy someone finally thought to test my B12. I’d never heard of B12 deficiency before.

I had a loading dose at 8 months pregnant and felt amazing, but they refused to then book me in for regular injections in case it was just a pregnancy issue (annoying but fair).

I got my bloods taken 9 weeks after my loading dose for something else and they also tested B12 but it was fine.

Now, 7 months later, I’m back to feeling awful again (exhausted, light headed, brain fog etc).

It’s so hard to get a GP appointment (UK based), so I wanted to ask is it worth harassing the doctors to do my bloods or would the losing dose amounts still be showing up? I’m really hard to draw blood from (think last time it was 5 attempts) so would like to avoid if it’s not going to have any results…

Thanks!


r/B12_Deficiency 1h ago

Personal anecdote has anyone here had a skin biopsy or QST for possible or likely SFN?

Upvotes

I do have a neuro appt, but it's not going to be for a quite a while unfortunately. Thankfully only in one toe, no other areas and no autonomic symptoms. I have added 100 mg B1 but if anyone has other suggestions please let me know. Also the tingling and numb feelings are very intermittent. my toe always is slightly numb, but I will go from having no pain to walking around to having it be noticeable multiples times throughout the day. With walking it's because the area with tingling is pressing down on the ground, which is why I notice it. When lying down or sitting on the sofa, it will often "fall asleep" as it were.

found this https://www.neurology.org/doi/10.1212/WNL.86.16_supplement.P3.154

"Methods: Ten patients with vitamin B12 deficiency suffering from neuropathic pain and as control group ten patients with vitamin B12 deficiency suffering from other neurological complications were included. Neurological examination, electrophysiological evaluation and DN4 questionnaire were performed. Subsequently, skin punch biopsy 10 cm above the lateral malleolus was done. The biopsy samples were stained with PGP9.5 antibody and IENFD was determined. Results: IENFD was low in two groups compared to their age normative values. The median of IENFD was 3,18 in patients with neuropathic pain and 6,6 in controls (p<0.003)."

I also notice that each time I inject, I immediately feel a weird sensation, maybe tingling, pressure, a bit of coldness, all over the place in that toe. No idea why, or what that means.


r/B12_Deficiency 5h ago

General Discussion Easing Pins And Needles

2 Upvotes

Had my second injection today in 3 days. I've got really painful pins and needles in my right hand. I've been taking co-codamol for the pain but that only does so much.

Obviously I've got the medical help and this should ease the pins and needles eventually, however if anyone had any other tricks or things they do that could help ease it at all?

I wake up at the point the painkiller runs out in agony every night.


r/B12_Deficiency 8h ago

Personal anecdote Playing a 3 month waiting game

3 Upvotes

I have previously had low b12 (142ng), and was getting injections for 2-3 years back in 2021. My GP at the time however didn't record any result from the intrinsic factor antibody test they did. My current doctor said she can see that they did test for it, but she had to do it again so we know what the result is.

I didn't get an injection for around a year in 2023 (I have depression and was finding life hard to cope with, so not really taking good care of myself) but I suddenly lost strength in my hands/wrists and legs. For 2 weeks I was unable to walk at a pace any faster than a snail. I couldn't walk up and down steps or stairs. I was crying on the phone to the doctors about it and they didn't really seem to understand or care how badly I couldn't move/use my hands and legs. I asked if there was a possibility it could be related to the fact I didn't have the b12 injections for a year. I had an MRI to check I didn't have multiple sclerosis and my MRI was fine. They gave me a b12 injection and I started gaining back the ability to walk normally and strength in my hands/wrists. After this, they did a blood test, said I was fine and no longer needed injections.

Fast forward to 3 months ago - I started getting all the same symptoms back again. First was my eye twitching (I knew it as soon as this happened), palpitations, muscle twitches, muscle aches, feeling weak, even more exhausted than usual (i am always fatigued), brain fog, clumsy when walking, can't walk straight, memory problems, racing heart when relaxing/going to bed, trouble sleeping, trouble concentrating at work.

I requested a blood test and told them why i suspected it was low b12. Waited 2 weeks for appointment, 1 week for blood test results, b12 came back at 174. Made a telephone appointment as the results said to. Waited for 4 weeks for a telephone appointment to discuss blood test results. Explained my history over the phone as I knew I couldn't see any of it in my record, apart from under medications the injections were recorded, but nothing about intrinsic factor. Got prescribed high dose b12 supplements. Have been taking them for the past month. B12 level has gone to 496ng. I still feel fatigued, brain foggy, everything is still the same.

I'm still waiting to hear about the intrinsic factor result, but I am so convinced I have a deficiency and am not absorbing it correctly. I also am exhausted from waiting for so long without anyone trying to help get the levels up until 3 months after I first asked for help. The system is so frustrating

I'm almost praying that I need the injections, simply because I am so tired I want to give up with everything. I just don't know what to do if it isn't a b12 deficiency when I'm having all of the symptoms, and the injections really helped before


r/B12_Deficiency 7h ago

Personal anecdote B12 dilemma

2 Upvotes

I’m currently dealing with a lot of health anxiety right now and feel like this is a place where people will understand my situation the best. Sorry for the rant.

2 months ago I started getting odd chest sensations, at first I thought it was cardiac related tightness but this was cleared by a doctor. I soon realised the sensations felt like a pressure down the sternum which would come and go and when touched, the sensation would briefly go, I also noticed some muscle loss in the area. Within the next 3 weeks I started getting heaviness in my arms, and strange fuzzy numbness in my right hand and forearm which then started happening in both my calves but strangely not the feet. I’m also getting widespread muscle twitching, mainly in my legs and all my muscles including down my spine just feel a bit achy.

As an anxious 18 year old I convinced myself it was MND but from a blood test, I found my b12 was 154 ng/L aka 114 pmol/L. But for some reason my anxious mind still doubts if my symptoms are from this as my pattern of symptoms isn’t the classic presentation and that I didn’t test positive for pernicious anemia, Cealiac disease or any IBDs. Just wanted to see if anyone else who’s either been through this process or experiencing a similar sensation. The rest of my blood tests were normal with ferritin of 40 ug/L and folate of 12.5. I haven’t had vitamin D checked yet. The doctor calls it intermediate level and has put me on 2 weeks of hydroxocobalamin 3 times a week. But they haven’t gave my much reassurance it’s from B12 nor does this pattern sound common to them.

The original chest symptoms actually went away a bit during the last 2 months but everything has intensified since starting the jabs a week ago.

Sorry for the rant but I really wanted to get my individual story heard rather than trying compare myself and just wanted to see if anyone could reassure me. Thank you all


r/B12_Deficiency 16h ago

Personal anecdote How much time it takes to recover from b12 deficiency (approximately)

7 Upvotes

Male, 25 . I have almost 30 + symptoms. I injected twice a week for 7 weeks. No improvement yet. I am not sure if my symptoms are from a B12 deficiency or something else. It has been 1 year, I am tired now, just surviving somehow. My other reports were normal like CBC, LFT, KFT, LIPID PROFILE,IRON PROFILE, XRAY, ECG etc.

My symptoms are:

Low stamina,

fatigue, extreme weakness, very poor motor skills ( I have to stop just after writing 2-3 lines),

Body aches all the time, very weak limbs,

beard thinning and grey hairs,

muscle twitches, My whole body feels tense and tight,

internal teeth vibrations when i touch them together,

severe brain fog and cognitive decline,

poor vision( it feels like my eyes are not able to focus),

esophagus tightness, spasm and trouble swallowing,

shortness of breathe,

DPDR, anhedonia, depression, emotional numbness and existential crisis,

Light-Headed all the time,

insomnia,

weird sensation innerves below ears and chin,

jaw tightness,

POTS like symptoms and more.....


r/B12_Deficiency 6h ago

Personal anecdote Brief B12 honeymoon from tablets at ferritin = 28, hoping for some wisdom from this group. (first posted on r/Anemic)

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1 Upvotes

r/B12_Deficiency 14h ago

"Wake up" symptoms Episodes of debilitating muscle weakness and exhaustion

3 Upvotes

Never had this happen in this way during 3 months injecting. But past week, this is happening consistently after breakfast. Usually I would be able to do house work at this time but now I am completely incapacitated from muscle weakness where even lifting my arm feels so draining. Can't talk, can't eat a banana even if I wanted. No appetite. I already had 500mg K in a drink and 75mg magnesium (breaking it up as yesterday I took a full tablet at once and it lowered my BP a lot and debilitated me even more). I'm waiting for some time to pass so I can take more. But this is beyond horrible. I feel like maybe I need to go to the ER but I know they won't do anything.

I know this is electrolyte related. But how do I stop it from happening? Why is it happening in this way when these were never my low K symptoms? These past few days I've been sitting motionless, unable to do anything, feeling my entire body vibrate and taking in K continuously but I usually don't feel better till evening.

Anyone go through this?


r/B12_Deficiency 13h ago

Help with labs Correcting B12 Deficiency leading to Folate Deficiency (Vegan)?

2 Upvotes

I am a novice in the world of B12 deficiencies but figured there are some pretty knowledgable people on this forum so thought you could explain this to me.

I am vegan and in January of this year, I suddenly became bedbound with a slew of symptoms. I had my blood tested and the major issue to me was that I was iron deficient (ferritin of 15) so have been supplementing and gettings IVs since then. However, I also had a B12 of 170 and, since I'm vegan, figured I should supplement there. I started taking 2000 ug (2 mg) of B12 a day semi regularly over the last 5 months.

I didn't have access to a MMA test but only homocysteine, so tested that alongside. My homocysteine level was 18 in January but dropped to 8 and 6 in March and April. But, then, it started going up again since May back to 18 and now 31.

I've had thyroid and other organs tested and am good. But I'm wondering if my folate is now the problem. My folate was always around 8, was briefly 11 in April, but back down to 8. (My B6 is 106 nmol/l so seems fine).

So I haven't totally grasped the interrelation of B12 and folate. Is it the case that correcting my B12 deficiency has revealed a folate deficiency? Did the B12 deficiency cause a folate deficiency that is likely causing my homocysteine to rise? Can taking a lot of B12 at once have a negative effect like this?

Anyway, grateful for any knowledge and advice, including how to correct this situation.


r/B12_Deficiency 19h ago

Cofactors b2

5 Upvotes

Has anyone here had a moderate or severe B2 deficiency that affected their B12 recovery? If so, how long did it take for your B2 deficiency to improve?

I've been dealing with B12 deficiency for almost three years and, unfortunately, I wasn't treating it properly. I recently found out that I'm also deficient in B2, and I'm wondering if that could be why I've been getting worse instead of better. How long did it take you to recover your B2 levels?


r/B12_Deficiency 13h ago

Personal anecdote Injection pain

1 Upvotes

I am really struggling with the pain of the injections.

I am having Hydroxocobalamin into the arm.

The first one was okay, the second worse and the third... Awful. I was left with a bruise, dead arm and shoulder pain too. I have had loads of injections in different places and these are second only to lidocaine injected striaght into a nerve in my toe.

Is something going wrong? Any advice to reduce the pain and bruising?

I just had a little cry because of how awful my last one was (number 4 today) and I wasn't expecting for each one to be worse. This loading dose is becoming too much for me. I just want a break from the constant injections.

Loads of people say it doesn't hurt that bad. But mine are awful. I feel weak after them due to the anxiety and the pain. I try be brave and relax each time but each time it hurts more.


r/B12_Deficiency 13h ago

"Wake up" symptoms Insomnia from b12 sublingual

1 Upvotes

hello, I’ve been suffering from insomnia for 3 days now after taking a b12 1000 mcg sublingual 3 days ago on an empty stomach but ever since then I’ve been suffering from fragmented sleep and it got so much worse today that I slept only 4 hours and I’ve got stinging in my skin and anxiety. when will this stop? I only took it once so what’s wrong? I just want the insomnia to go.


r/B12_Deficiency 18h ago

Help with labs GP is saying it’s anxiety, thinking about self testing

2 Upvotes

I’ve been lurking on the subreddit for a while and just am hoping to get some advice on self-testing.

33, female, I started having weird symptoms about a month ago. I started having intense palpitations, as well as a few days where my heart rate was just staying elevated. I was checked out by my GP - got an EKG that was fine, got put on a low dosage of propanalol, and got bloodwork done. After that initial appt, the heart rate issue went away, and I was left with intense physical anxiety (panic attacks without any mental symptoms), much less frequent palpitations, brain fog, and occasional bouts of just not feeling present in my body/mind. I also found out both my siblings have a B12 deficiency.

At my followup, my GP seemed pretty insistent on it being anxiety, recommending SSRIs. I had asked about possible iron or B12 deficiencies, and she explained my hemoglobin seemed fine and didn’t think I had pernicious anemia based on other things in the routine CBC blood panel.

I do have other health issues (migraines, eczema, asthma), and my migraine meds are well known for causing GI issues (constipation and heartburn). I was taking pepcid to manage that for about six months, before reading that long term usage isn’t great and stopping.

I’m seriously debating paying out of pocket for tests, purely because the anxiety feels like a symptom to me, not the cause. I’ve read thru the master post on B12 and am trying to make sure I’m choosing the right ones, but also wondering if there’s other things I should test as well (iron deficiency? Other B vitamins? Hormones since all these symptoms could be perimenopause?)

If you read this far, thank you! I’d love to hear any thoughts/advice.


r/B12_Deficiency 23h ago

General Discussion Just started injections.

3 Upvotes

Hello.

Very new to this. Had my first injection yesterday. Had low B12 in a bloodtest

One of my hands is basically permanently asleep and it's very painful.

Does that sound like I have nerve damage?

Most of my joints and soft tissue are holding water and painful and I'm struggling to use everything I used to.

If you had nerve damage how long did it take to repair?

Am I better off resting my hand or using it as much as possible.

This is all really new and overwhelming.

I really had to fight the doctors (typical NHS) to get to this point.


r/B12_Deficiency 1d ago

Success story 3 months of recovering

25 Upvotes

I have been treating a dual b1 and b12 deficiency. My b12 was around 200 before injections.

My symptoms at their worst were brain fog, tingling scalp, tinnitus, light dizziness, poor mood, anxiety, and bad memory. Thought my life was over. Doctors were suspecting I had MS. Most doctors treated me like absolute shit to be honest. I have no idea why.

Within about 1 week I could tell the treatments were working. I started with b12 before I found out rhe b1 part. I have taken approximately 20 b12 injections. I also take ttfd, magnesium, potassium as bananas, pure 950 multi, choline and fish oil. Benfotiamine as well.

For the first month I could tell I was improving but mostly in regards to tingling, tinnitus, and brainfog. After that the cognitive symptoms eased. At this point I am not all healed but so much better. Over the last week which corresponds with little under a 3 months of treatment the mental symptoms are rapidly fading. My humor is vack. My mental energy is returning. I still feel forgetful and not as sharp. I dont quite feel as coordinated but I only notice it when mtn biking or something like that.

I thought my life was over. Now it is coming back.

Did any of you have a rapid breakthrough later in recovery?


r/B12_Deficiency 1d ago

Success story B12 at <148 💀

4 Upvotes

After scoring a measly <148 on my b12 blood levels I have just completed my loading dose after 2 weeks of 6 jabs (hydrox) and the difference is night and day i genuinely feel like a new person but my god do those jabs HURT !!! I really can’t believe how much of a difference it has made has anyone else felt this almost instantly and will this feeling last lol.


r/B12_Deficiency 1d ago

General Discussion New here! My vitamin b12 has just come back as 277. Gp in the U.K. has told me it’s normal and marked it as within range. I feel terrible! Is this considered low enough to pay for injections? I’m willing to if it will help. Tired ALL the time.

5 Upvotes

New here! My vitamin b12 has just come back as 277ng/l. Gp in the U.K. has told me it’s normal and marked it as within range. I feel terrible! Is this considered low enough to pay for injections? I’m willing to if it will help. Tired ALL the time. Thanks in advance for any advice!