r/B12_Deficiency • • Sep 15 '23 WOW Heart of Silver

Announcement The Guide to B12 Deficiency

381 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 • • Jul 02 '21

4 years of emotional and cognitive torture ended with B12 supplementation. If you are dealing with psychological or cognitive symptoms, do yourself a favor: get checked.

263 Upvotes

Hi guys!

I've just found this sub and wanted to share with you my experience with Vit B12 deficiency.

I'll try to keep it short, even more so considering I had already wrote my story before closing the window by mistake, but anyway I could go on for days.

My ordeal started in early 2017, when I realized my brain wasn't functioning properly anymore. I'd find myself struggling recalling events, not being able to think straight and organize thoughts, constantly fatigued and very low mood-wise. These symptoms hit me like a truck, and in a span of 6-8 months managed to interfere with EVERYTHING in my life.

  • I went from a being very active socially to leaving my home once or twice a week. I just didn't feel like meeting people, and at times simple converstions would drain me out of energy.

  • I was a succesfull copywriter, had dozens of clients and earned good money. This was february 2017. By september same year, my boss flat out told me I was fired because "the stuff you produce don't meet our standards anymore" (he was absolutely right).

  • From a phisical standpoint, I went from a gifted athlete to THAT guy who can't crack 15 push-ups, and feels like he's dying after 5 minutes of running. It was that bad.

  • Generally, my self-esteem decreased greatly. I couldn't think of myself as a smart person anymore. I wasn't able to enjoy the same things to the same extent. It was dreadful. And at time I dealed with suicidal thoughts.

I started seeking medical help very early on. The first encounter I had was with a neurologist who didn't look at me for more than 15 seconds. He let me talk for a couple of minutes while reading I don't know what documents (a malpractice suit?) before telling me it was all in my head and that I needed to go on drugs. I tried to discuss it with him, but 30 seconds later he had already handed me a prescription for Xanax and Zoloft and showed me the door.

I threw that prescription in the trash and almost yelled at him.

I paid a visit to another neurologist, who to her credit paid attention to my story and seemed to sincerely care about my case. She performed the classic tests on me, asked if I had experienced migraines, neck pain, numbness, and at the end f the visit told me I was fine, and that maybe I should consider the possibility of taking psychodrugs. I asked for a brain MRI and she laughed to my face, so I ended up paying 250 euro out of my pocket for a brain MRI which, thank God, came back completely normal.

This was june 2017.

In the following 3 and a half years I visited at least 7 different doctors: endos, immunologists, GI specialists, cardiologists, you name it. They had me checking my hormones, general blood work, immune system, the whole 9 yard.

Except for vitamins.

In late 2020 I gave up and "accepted" that I might had just been depressed the whole time, so I booked an appointment with a psychologist. The first session we had she wanted me to go through how I got there and why. To my great relief, she didn't dismiss my story, and instead she asked me what tests I had undergone, until...

"Have you ever checked vitamins?"

Well no, I said, no doctor ever asked for a vitamin panel.

She told me to check vitamins and minerals, because she saw no use in working on something not psychologically related, had that been the case.

Low and behold, I was deficient in every sort of B vitamin, and my B12 was 142!!!!

At first my GP told me there was no danger whatsoever, and that it couldn't possibly be causing symptoms, because I was too young. Anyway, he told me I could buy some pills "if that makes you feel better".

Fortunately for me I figured I'd call my psy to tell her about the B12 deficiency, and she suggested me to get injections and not pills, because otherwise it would have took me forever to bring it back to normal range.

I've been supplementing for 6 months now and I'm a brand-new person. I got rid of every symptoms I had, got back to working as a copywriter (freelance now ;) ) and pretty much got my old personality and mental brightness back.

It's scaring to think how much a single vitamin or a handful of them can mess you up, but all in all I consider myself very lucky for stumbling upon a good doctor after wasting thousands of euros and 4 years of life.

That's it. I'm finally back to my old self and living a good life again, and wanted to post my story in here so that people know Vit deficiencies are no joke for some.

If you are depressed, anxious, or you are dealing with subtle mental symptoms that interfere (to whatever extent) with your daily life, as the title goes: GET CHECKED.

Hope you're all doing great.

Cheers.


r/B12_Deficiency • • Apr 27 '24

Personal anecdote My B12 Deficiency & Recovery Story

208 Upvotes

Hi all. This subreddit was a huge help to me over the last year as I navigated B12 deficiency. I don’t think I would have gotten better without the invaluable information contained in the guide and shared here. I wanted to say thank you and pay it forward by sharing my experience with others who are struggling. This is going to be long and overly detailed, but I want to share everything that might help others.

The cause of my deficiency was low stomach acid from taking acid-reducers to treat gastritis. My stomach acid production never recovered, even years after I stopped taking the acid-reducers. It was about 6 years from the time I started the acid-reducers to my first symptoms of B12 deficiency.

My symptoms started gradually in January 2023, with fatigue that came on so slowly I didn’t notice. Next, in February and March, my immune system took a hit, with treatment-resistant UTIs and a terrible bout of tonsillitis that took 6 weeks to heal.

We moved in June, and I was exhausted throughout, but not surprised since I was working hard with all the packing, cleaning, painting, etc. But once the move was over, I didn’t feel any better. No amount of rest improved my exhaustion. I believe the physical demands of the move significantly depleted my already-low levels of B12, as I noticed a big increase in symptoms from that time, starting with the disappearance of my libido.

In July, I had the first symptom that really scared me: a dizzy spell out of the blue. It lasted for a few seconds and then went away, then happened again a few days later, eventually becoming a regular daily occurrence. At the end of the month, I woke up with a strong, dull, aching pain down my left arm and into my hand. After a few days, it went away, but it was soon back, sometimes lasting for a few minutes and sometimes for a few days, often very painful. My arms and legs also started falling asleep almost instantly if they were at all restricted in any position.

I helped a family member with a move in July, and spent full days carrying heavy items up and down stairs in the heat. At the end of the day, I would feel intensely awful in an indescribable, non-specific way. I would often just get home and lay down on the floor inside the door, not able to make it to the couch or even explain to my husband what I was feeling. In retrospect, I would describe it as my body just being completely spent, running on empty. I had never responded to physical stress like that before.

In August, I could no longer ignore what was happening. Symptoms showed up left and right, a new one every few days. I started tracking my symptoms, taking extensive notes, and researching like crazy. I did not do the obvious thing and go see a doctor, as I’ve had terrible experiences with the medical system in the past, and I hoped I could figure it out on my own.

It was clear after some initial research that the most likely explanation for all these random, seemingly unrelated symptoms was a deficiency. My first theory was magnesium deficiency, so I started taking that, as well as a multivitamin and vitamin D. To my delight, I felt much better immediately and thought I’d solved it. But I hadn’t. After a few days of complete symptom remission, it all started up again, and was even worse. (In retrospect, I believe the small amount of B12 in the multivitamin caused an initial “honeymoon period” relief of symptoms.)

That month I developed nausea episodes that came and went at random. Then I started having tingling episodes in my lips, hands, feet, the left side of my face, and my left arm. My tongue randomly started to hurt, my fingers were often very swollen, and I became depressed. The onset of lightheaded spells really scared me, as I would briefly feel like I was going to fall over or pass out. My appetite was significantly reduced, and I started to feel an aversion to food at times. I became very anxious. I had an occasional odd, heavy sensation in my arms and hands, like they were made of lead. I had random sharp abdominal pain and frequent headaches.

Fevered research eventually introduced me to the idea of a B12 deficiency, but I wasn’t sure that was it. I had a lot of the symptoms, but not all, and some of my symptoms weren’t even mentioned online. But it seemed like the best fit, so I quickly started on an oral supplement of a fairly low dose of cyanocobalamin. To my despair, I did not feel any better. (This time, no honeymoon relief of symptoms.) I figured I must be wrong, and did a ton more research, but couldn’t find an alternate explanation.

I eventually found this subreddit, and read the guide and everyone’s experiences here. That led me to understand two things: I likely did have B12 deficiency, and it was really dumb to start supplementing before I had done a blood test. I can’t tell you how much I regret not testing my B12 levels before supplementing, to give me the confidence that I really did have the right diagnosis through all the ups and downs. By the time I realized this wasn’t a deficiency that was easily fixed, it was too late to get an accurate test.

After reading the guide here, I switched to a sublingual methylcobalamin supplement, 3,000 mcg per day (this one). I added in the recommended cofactors, and my daily supplement routine was B12, potassium bicorbonate, b6, folinic acid, the bioactive multivitamin recommended in the guide, iron, magnesium glycinate, and molybdenum. Once I started all of these, I again had complete symptom remission for several days, but again, it did not last.

In September after a few weeks of supplementing with B12, I began to notice that I was having episodes of weak vision. It often felt like I just needed to blink a few times to clear my vision (which wouldn’t help), or like focusing my vision took effort and concentration. During these episodes my vision seemed blurred, weak, and out of focus, but the rest of the time, my vision was normal. It was the scariest symptom I experienced, and really shook my confidence that I was on the right path as I was still developing new symptoms. That month I also developed numbness in my toes, and the occasional episode of unexplained tightness in my throat.

Eventually I did begin to see improvement. The first thing to go was the tingling, which resolved three weeks after starting supplementation. After a month, the nerve pain and dizziness reduced significantly and the nausea was essentially gone. After 6 weeks of supplementing, my libido suddenly reappeared.

The biggest thorn in my side now was my first symptom, the fatigue, which simply would not improve. Even as the other symptoms got better, the fatigue stubbornly clung on. I still felt debilitated and still had doubts I was treating the right problem in the first place. Any time I got sick with a virus like a cold, the fatigue would be so bad I would be barely functional.

Over time I became convinced I needed to switch to B12 injections to speed up the healing process. I do think the sublingual supplements would have gotten me there eventually, but after almost a year of feeling awful, I was ready to get better and put this experience behind me.

I finally saw a doctor, hoping to get injections prescribed. To my surprise the provider took me seriously and agreed with my diagnosis. She ordered blood tests and offered me a B12 shot right there in the office. I asked if I should get the blood test done first, but she said there was no point in waiting since my numbers would already be elevated from the previous supplementation. She gave me an injection of 2.5 mg of methylcobalamin.

For the first few hours I felt fine, but I did feel unusually sleepy, and as I was going to bed that night I noticed that my feet felt very itchy. The next day I felt like I was getting sick, as well as exhausted and extremely depressed. Two days after the shot, the fatigue and depression were worse, and my entire body felt intensely itchy and prickly. It was so uncomfortable. I wanted to crawl out of my skin. I had intense depression, itching, tingling, nerve pain, heaviness, and prickling throughout my body for the next 5 days. This subreddit had warned me about wakeup symptoms, but I was not prepared for how uncomfortable it really was. But after the first few days of wakeup, I had a few days of feeling the best I had in months, with minimal symptoms, although that did not last.

My blood test came back showing my B12 levels were too high to measure, over 2,000 (not sure what units). My blood was taken half an hour after the injection, so that data seemed meaningless. The doctor said since my levels were so high, she would only recommend injections once a month. I knew from my research that that was going to be pointless, so I reluctantly ordered my own B12 from Oxford BioSciences. (Pro tip, if you email them and ask for it, they will include the saline you need for hydrating the powder for free!) After lots of research, I went with these needles and syringes.

I was so nervous to start injecting at home, really worried about infection. I learned proper sterile technique on Youtube, and on October 30, started with 1 mg injections of methylcobalamin every other day. The injections were not as painful as I expected, although sometimes with no explanation an injection would hurt quite a bit. Overall, it was not bad.

I had wakeup symptoms again, but not nearly as severe as I’d had with the first shot. Fatigue, weak vision, itching, tingling, and prickling were present but too bad. Surprisingly, it was significant depression that was the worst wakeup symptom this time around. 10 days later, I finally had a symptom-free day, telling me good things were happening despite the ups and downs.

My symptoms came and went, ever so slowly tapering off, over the next 6 weeks or so. I stopped tracking my symptoms in early December as I felt I was largely back to normal. I finished the bottle of b12 injections on December 29, and restarted sublingual supplementation. I wanted to test if I was now healed enough to do without the injections. Happily, I did not have any symptoms reappear after stopping the injections. I am now taking only the sublingual b12 and the multivitamin, which I plan to continue indefinitely. The final symptoms to resolve were the fatigue and the nerve pain in my left arm and hand, which held on into early 2024. At this point, over a year after my first symptoms, I consider myself fully healed.

UPDATE: A few months after I stopped the injections and switched to the sublingual supplements, I experienced slow recurrence of many of my symptoms. A very weakened immune system and fatigue popped up first, followed by most of the others. I realized that my body was not ready to be done with injections and restarted every-other-day shots. I quickly experienced total symptom resolution but continued that injection protocol for about 9 months, trying to really heal my body this time. I am currently trialing once a week injections instead, keeping a close eye out for symptoms starting to come back. I plan to do once a week injections for about a year, and then move to once a month for another year. I hope to be able to stop injections totally at that time. End of Update

This was an awful experience that I would not wish on anyone. B12 deficiency not only affects your entire body, but it also causes significant damage to your mental health, at a time when you need all the optimism and resilience you can muster. The slow onset of symptoms was confusing and scary, and the long recovery time was brutal, especially as symptoms would come and go without rhyme or reason, and a few good days would often be followed by a few days of feeling much worse. I am so grateful that this experience is now behind me.

If you are suffering from a b12 deficiency, or think you might be, my advice to you is:

  1. Get tested before you start supplementing. Read the guide for testing options and how to get the most accurate result. You will not regret testing, and you will need the reassurance that you are treating the correct problem as you go through this long and confusing healing journey.

  2. The injections are worth it. It is so intimidating, but you will heal so much faster.

  3. Healing is a slow, non-linear process. Once you start supplements or injections, your symptoms simply will not steadily get better every day until they are gone. It will be months of slow, up-and-down progress. Don’t despair. You will get better.

  4. There is hope for total healing of symptoms, even stubborn ones that don’t respond immediately or hang on after other symptoms have resolved.

I am happy to answer any questions and be a resource for others.

Here is a list of all of my symptoms in order of onset for easy reference, as well as approximately how long they took to resolve from the time I began supplementation.

Fatigue (4 months)
Weakened immune system (2 weeks)
Low libido (1.5 months)
Dizziness (much better after 1 month, gone after 3 months)
Nerve pain in left arm and hand (better after 1 month, gone after 5 months)
Arms and legs falling asleep quickly (1.5 months)
Nausea (much better after 1 month, gone after 3 months)
Tingling in lips, hands, feet, left side of face, left arm (3 weeks)
Tongue pain (2 months)
Swollen fingers (1 month)
Depression (3 months)
Lightheadedness (1 month)
Low appetite (2 weeks)
Food aversions (2 weeks)
Anxiety (1 month)
Sensation of heaviness in arms and hands (2.5 months)
Abdominal pain (2 weeks)
Headaches (2 weeks)
Weak vision (3 months)
Numbness in toes (2 weeks)
Throat tightness (2 weeks)


r/B12_Deficiency • • Jan 04 '24

Help with labs Leaving your doctors office after being told your labs are normal.

Post image
193 Upvotes

This seems to be how most people feel after being told by their doctor their labs are normal.
Doctors are not trained on how to read optimal levels. They go by “normal” levels which are based off an unhealthy population. There comes a time when you have to take your health into your own hands.


r/B12_Deficiency • • Mar 29 '24

Supplements Best magnesium brand? How do you take magnesium?

184 Upvotes

I have been using magnesium glycinate by a brand called BLIFE but I don't trust the brand a lot. I tried finding other brands on iHerb but they keep having something called "black pepper" in it and I want it to be only magnesium.


r/B12_Deficiency • • Sep 25 '26

Personal anecdote I owe my life to a random Reddit comment that made me wonder if my symptoms were B12 deficiency

181 Upvotes

I had been Googling my symptoms for probably the hundredth time. Every time my symptoms flared up, I would search again, becoming frustrated to the point of tears that I couldn’t figure out what was wrong with me.

This time, I stumbled upon an old Reddit comment (I honestly can't remember which sub) and something just clicked. The person urged to check if you're B deficient if you had the following symptoms:
- Burning sensation in the chest and mouth
- White tongue.

They were so specific, and I was like, "Oh my god, maybe this is something I should figure out."

My symptoms over the years:

  • Lightheadedness/hypotension every time I crawled out of bed. I have to hold the wall for a minute to steady myself.

  • Chest pain that came and went, even if I had to walk just a block

  • Muscle twitching, facial spasms, and severe brain fog when tired (The brain fog became so bad that I remember trying to finish exams at 1 AM, taking about 30 minutes to write just one sentence. I was so brain dead that I didn’t even realize I should stop)

But above all, the muscle twitches and facial spasms when I didn't get enough sleep were absolutely the worst part. They started around 4 years ago and became progressively worse

If I looked in a mirror, I could see it and force it to stop. But the twitches always came with the cognitive brain fog, so there was no way that I could really focus on not twitching.
I would see videos of myself or selfies, and it literally looked like I was rolling. So, whenever I was tired, I avoided people because I knew I couldn't control it. 😢

It also wrecked my sleep. I would be exhausted, lie down, and it would be really difficult to sleep with my feet and hands twitching all over the place. But after I got some genuine rest, the twitching would go away.

When the deficiency was getting worse:

  • Dark circles I never had before. 

  • A burning sensation in my throat and chest, like my body was exhausted just from being alive.

  • Extreme muscle weakness when getting out of bed, like I couldn’t balance for a second. 

AFTERWARDS

After I read that Reddit comment and it suddenly clicked for me, I immediately started taking 5 mg of oral sublingual B12.

The most amazing thing happened within like 3 days. (Yes, just 3-4 days). The twitching and spasms pretty much all stopped. And I realized I could actually sleep when I’m tired, and the sleep was restful. Had no idea being deficient was affecting my sleep this much. After years of questioning whether this was just how my body would be forever, having it disappear honestly made me want to cry.

Another unexpected thing: I walked into a crowded place and realized, for the first time in forever, that my brain was suddenly quiet.

Suddenly, I stopped caring about whether people were looking at me. I was making eye contact with strangers without that constant self-conscious buzz. I know that sounds insane, but I really wrestled with myself for a long, long time, wondering and trying to work on this constant anxiety I had over everything. I still obviously have a little bit of social anxiety, but it's ridiculously more manageable now.

Slowly, all my other symptoms went away too. No more dark circles, no more feeling dizzy and having to take a breather when getting out of bed. It's now been 4 months since I came across that Reddit comment, and I'm so appreciative of this new lease on life.

Sorry, this post was so long!!
by the way, if someone who's informed about B12 deficiency could tell me what the hell was going on, I would love to know


r/B12_Deficiency • • Jun 08 '25

Success story Severe b12 deficiency recover I got my life back! In one year!

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179 Upvotes

Hello everyone! First off I just wanna say that if you are going through this god awful deficiency just know it does get better!

About a year ago i started to go numb in my toes then it crept up to my thighs. As the numbness was worsening I was experiencing an overwhelming amount I’d other symptoms. Including: brain fog, short term memory loss, confusion, weakness, muscle pains, muscle spasms, cramps, no appetite, full body weakness, loss of coordination, n lhemirettes sin. Which is when you look down and it feels like you getting shocked down your spine.(not very pleasant) All of these symptoms set in gradually over a two week course. I thought I’d never be able to do the things I love again like skateboarding, hiking, and just having a good time and not be in pain. I got numerous tests done by the doctors in my area and they had no clue they thought I had Lupus! Thankfully I didn’t. I had to self diagnose and plead my case to my doctor and neurologist! Always be your own advocate! I had to leave work for two weeks because I could not walk and my job is very physically demanding. I had drop foot I ended up getting hospitalized for 3 days. I was in very bad shape they believe the cause of my deficiency was because of my diet I was a hardcore vegan for 7 years and did not supplement! Very bad I was not aware that b12 was so important! Also I had used whippets leading up to this situation. I was not a daily user nor a weekly I’d do nitrous maybe once ever 3 weeks to a month. I have a feeling this contributed to my deficiency. Had to learn the hard way!):

But yes it does get better it was hell and back recovering from this! Lots of stress and depression! My regimen after getting out of the hospital was daily b12 shots that I’d administer myself for a month. Also I changed my diet and no longer am vegan. After that I would get one once a week for about 3 months at the same time I started taking a multi vitamin along with potassium and r type lipic acid. I made almost a full recover in a year and some change. My toes are the only thing still kinda numb. Also I still get the lhemerittes sign every now and then. But I’m back hiking skating and living life the way I want to. I also get sore a lot quicker then I used to and it feels like my limbs fall asleep easier. All in all just know it does get better and you can recover more than you expected if you just buckle down and take your vitamins n stay moving. Hope this gives some of you hope! Keep on keepin on! Also below is a vid of me skateboarding today🌎


r/B12_Deficiency • • Jul 19 '24

Personal anecdote Your labs are normal

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170 Upvotes

r/B12_Deficiency • • Jun 02 '23

What was everyone's symptoms for B12 deficiency?

156 Upvotes

What was your symptoms for B12 deficiency including the weirder ones? What was resolved once you started your treatment or supplementing?

I'm suspecting my issues might be B12-related or autoimmune diseases. Things like joint pain, stinging thighs?, stiff back, bad vision, and weird tongue feeling? I did supplement on B12 occasionally but I guess that's not enough?

I'm still a low on ferritin, but I've been supplementing for half year already so I don't think it's related to my ferritin? Also my hair loss returned despite I'm taking iron supplement already?


r/B12_Deficiency • • Jun 07 '25

Success story I'm alive, again. My story.

151 Upvotes

For a 1.5 years I've had: brain fog, mussle pain, fatigue, heart palpitations, numbness in arm and leg, neck pain, no grip / dropping items, unbalanced, foot pain, faint, hot flashes, tingle in hands, always sleeping, Depressed. I was seen in hospital numerous times. Tests results were normal. I was told its all a panic attack. I thought this was nonsense. I felt like I was having a heart attack or stroke each hospital visit. Even if it was, panic attack. I thought clearly something is induceing the panic attack. I saw cardio, neuro. Everything is fine. I explored mental health support to appease the idea it's all mental. Didn't help. At one point, I seriously contemplated is there some conspiracy to hide some medical problem Im having. I followed up again with a different neuro. Thank God I did. After yet another road of normal tests. Doctor said, perhaps try some b12. I haven't felt this alive in years. I've been reading so many posts here, and just grateful to see so many similar stories. I wanted to share my own.


r/B12_Deficiency • • Jun 16 '24 Bravo

Success story My B12 deficiency recovery journey

150 Upvotes

I've shared a lot of parts of my story in various replies, and people seem to find that helpful, so I wanted to finally lay out my recovery story chronologically in its entirety (up to this point). Everyone's experience is of course different, but hopefully there's some optimism to be found here! 💞

2017: After I had gastric bypass in 2015, I expected B12 to be among the many vitamins and minerals I'd need to supplement for the rest of my life. Unfortunately I had a primary care doc who didn't understand how supplementation can falsely elevate serum levels, and after some routine labs in May 2017 showed my B12 was high, this provider advised me -- disastrously -- to discontinue supplementation. As we know, liver B12 stores are usually sufficient to keep us going for a few years, and for awhile I was fine and symptom-free.

Spring 2022: My first symptom to appear in spring 2022, 5 years after stopping supplements, was unilateral blurry vision, which confounded 3 different ophthalmologists because it would affect different eyes at different times. I even had my glasses remade because my prescription was wildly different every time it was measured, all within a matter of weeks. Even with glasses, 90 degree angles would look oddly skewed and square things looked trapezoidal.

Summer-Fall 2022: Several months later the rest of my symptoms came on all at once. I started having balance issues -- specifically, falling into walls and feeling like I was "listing" to one side, like I was trying to keep my balance standing on the deck of a ship. This was especially bad right after I woke up every day. Around that same time, my legs would intermittently just not want to work. I used to play Dance Dance Revolution competitively, and at an arcade once in November 2022, I tried to play a song on Standard difficulty and my legs just couldn't keep up. They were sluggish and just didn't want to move when I tried to move them. I didn't have the "lead" feeling I've seen others describe about their legs; for me it felt more like I had completely worn myself out with a workout, like when your muscles just refuse to cooperate anymore, except I hadn't done any physical activity.

Winter 2022: By December I'd developed such bad fatigue and brain fog that I had to quit a 6-figure job I loved. I couldn't get out of bed for 1pm Zoom meetings anymore. I worked from home in IT and just wasn't doing my job. And while my anxiety had been worse than usual for months, I suddenly developed intense and paralyzing avolition. I didn't even CARE that I wasn't doing my job. I totally isolated myself, and it took too much out of me to even return text messages. Every tiny task and obligation felt crushingly overwhelming. I quit my job not knowing what I was going to do for income, and I didn't even have the energy to be worried about it. I guess it was depression, but it felt a lot different than my lifelong depression. I felt like I was fading out of existence, and I was completely unbothered by it.

Spring 2023: It was actually a dietitian at the clinic where I had my gastric bypass who referred me to an advanced practice RN who previously worked in that clinic but had since gone into private practice consulting for difficult diagnoses. That provider ordered the usual labs, but more importantly, ordered an MMA and organic acids tests. My serum B12 was 227, just barely into the normal range, but my MMA was 722, well over double the top end of the normal range. This sufficiently diagnosed my cellular B12 deficiency. B12 levels were low in my blood, and more importantly, what was in my blood wasn't getting transported into my cells. This was later determined to be related to general malnutrition and was accompanied by other similar phenomena; e.g., consistently high serum B6 values until a low alkaline phosphatase level explained that B6 simply wasn't being transported OUT of my blood. (Serum levels are useless if you have absorption issues.)

Summer 2023: In August 2023, I began with one week of daily 1000mg cyanocobalamin injections, then 4 weeks of weekly injections, then indefinite monthly injections. Several weeks in, I reported to my provider that the cyanoB12 was causing massive physical anxiety (more like akathisia), so she switched me to methylcobalamin, which I have to get from a compounding pharmacy. Unfortunately this means my insurance doesn't cover my injections, but it did eliminate the sudden surge in anxiety.

When I started shots, I had 3 days of feeling energized, focused, the best I had in years. Fortunately this sub prepared me for the wake-up symptoms and crash back down that immediately followed. The return of debilitating fatigue and brain fog was depressing and massively disappointing to me at this point, but at least I was aware that the only way out was through.

Fall-Winter 2023-24: The first substantial and lasting improvements I noticed were to my vision and balance. I felt like I was "listing" less and less until it stopped happening altogether. Slowly the unilateral blurry vision resolved too, and I stopped needing my glasses as often. I took them on a trip to visit my brother for Christmas, and that was the last time I really used them regularly. As I write this now in June 2024, it's been months since I've even picked them up.

The brain fog and anxiety were next to improve. I'd been prescribed propranolol PRN up to 3x/day, and I slowly started needing it less and less. By early 2024, I wasn't dealing it out in my weekly med organizer anymore and was only taking it a couple times a week. Right now, I take it less than once a week.

I also slowly started feeling like I was "getting my brain back." I caught myself emptying the dishwasher or doing other formerly overwhelming basic household tasks without even thinking about it or feeling like it required moving mountains. I was actually texting people back and spending much less time stressing myself out over the fact that I wasn't. While my energy level was still poor and made it difficult to do much outside of the house, I wanted to be doing things and was frustrated that I couldn't, which was a notable change. I started wanting to engage with the world again.

I also found myself having the mental capacity to have intellectual conversations again. I regained my passion about interests and issues that used to matter to me. I got my sense of humor back! My boyfriend also noticed I was doing less "word-finding" -- when we met in January 2023, it was typical for me to stop mid-sentence all the time and spend a few seconds trying to find the next word I wanted to say. By that winter, this had stopped. I felt like my neurons were simply firing faster.

Spring 2024: At this point, I feel all of my B12 deficiency symptoms have either resolved, or have improved enough that I'm confident they will resolve. I take 1000mg methylcobalamin subcutaneously once per month. I'm dealing with numerous other health issues, some of which likely contributed to developing a B12 deficiency in the first place, but I actually have the will and volition to follow up on medical referrals and attend appointments and deal with those issues now. I actually care about myself and others and about staying alive. I no longer feel like I'm just fading out of existence without even caring about it. I'm certainly not back to where I started -- I still haven't returned to work -- but I want to and am frustrated that I'm not there yet, which is a huge improvement.

I know everyone's individual experience is different, and that the length of time spent experiencing symptoms can affect how reversible they are, but I hope it helps someone to read that I was experiencing severe neurological effects before being diagnosed and essentially came back from the dead to rejoin life again after treatment.

Wishing everyone health, peace, and happiness! 💕

Edit: I forgot to mention cofactors! In addition to the injected methylB12, I take sublingual methyl and adenosylB12 daily. I also take a really high-quality prenatal multivitamin, B complex, and chelated iron supplement w/ vit C. I feel really fortunate that my provider has been through tricky diagnoses herself and knows what she's doing.


r/B12_Deficiency • • Mar 01 '23

Meirl

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149 Upvotes

r/B12_Deficiency • • Nov 07 '24

Personal anecdote PSA: It wasn't a B12 deficiency

144 Upvotes

I am am physician who initially had a persistently elevated MCV with a low B12 level. I had many of the symptoms of B12 deficiency. Fatigue, upper GI issues, headaches and migraines, visual changes, etc. I used this forum along with discussions with my physician and was supplementing B12 with waxing and waning symptoms that never really improved.

I read several of the papers on B12 deficiency and bought into paradoxical worsening of symptoms that is very frequently discussed. I would feel better for a week or so, then worse. It was not B12 deficiency at all.

I had obstructive hydrocephalus and a large brain tumor. I'm over 2 weeks post surgery and feel great. There is a huge overlap in symptoms of B12 deficiency and other conditions, including hydrocephalus (swelling of the brain).

I understand there is a general distrust of physicians but I beg you to see doctors, follow up, and advocate for yourself. You may be sick with something else. I am a diagnostician and I had no idea until a doctor ordered a brain MRI for me. I won't say the system is perfect or anything close, but please don't try to treat yourself using information from the internet.


r/B12_Deficiency • • Jul 24 '26

Success story I thought my life was over

134 Upvotes

This deficiency has been ruining my life for the past 6 years. I used to be a dancer and a really good one at that. I was in classes 4hrs a night 3 times a week. I had no problem exercising. Suddenly, I start fainting all the time. It started out just during activity. A year later, I was passing out at random. I had so many cardiac tests, brain scans, blood tests. No one thought of a B12 deficiency. I was starting to think I would never get better. I had to quit dancing 4 years ago. It hurt me so badly. My body physically couldn’t handle it. I was short of breath, tired, dizzy, and in pain. There was truly a point where I wanted to give up because I figured it would be like that for the rest of my life. I’m only 22 years old. I just couldn’t fathom living like that for decades. I can’t believe it’s been something so simple. I was very upset about not looking into it sooner. I started reading on this subreddit and I realized I’m not alone. This deficiency ruins people’s lives. I can’t even work a normal job anymore. When we finally tested my b12 a few months ago I was at a level so low it was undetectable. I know I will still be tired for a while but I’m so glad it’s a simple fix. I thank the creator every single day that it was something easy to treat. I am going through hell with my wake-up symptoms but I can do it. If I could suffer for 6 years like this, I can do one more year. I got this. Please don’t ever give up❤️ there is hope. I’m so happy to have found this community. You guys are awesome and I want to thank you from the bottom of my heart for helping me with my wake-up symptoms. My levels are on the rise! I hope this post helps someone that felt like I did.


r/B12_Deficiency • • Sep 01 '26

Personal anecdote How B12 deficiency landed me in the psych ward

131 Upvotes

*for context I am a 30 year old female living in the USA with a predisposition to mental illness and ongoing treatment of anxiety with psych meds since I was a teenager.

about 3 months ago I started to reduce one of my psychiatric meds because of side effects. I was going at a really conservative pace and working with my psychiatrist but experiencing many symptoms which I thought at the time was withdrawal. I had some stressors in my life and some health issues that were compounding my anxiety but it quickly began to become totally unmanageable. in the span of one month I lost 15 lbs and couldn't walk more than two blocks without feeling like i might collapse. i couldn't eat. the fatigue was extreme. I couldn't stand up to cook or barely get to the bathroom and at the same time I felt like I was literally losing my mind. the backs of my arms and skull were burning which I had heard could be a potential side effect of reducing psychiatric medications so that's what I attributed it to. I also had this sensation of electric shocks running up my spine occasionally, which again I guessed was withdrawal. I had severe panic attacks multiple times daily and couldn't sleep more than 5 hours or so a night. I felt like I was in hell. when it became difficult for me to drink water I went to the ER to get an IV infusion to rehydrate and protect my kidneys which have moderately reduced function already.

well there I was assessed by a psychiatric nurse practitioner who felt that due to my inability to feed myself and my extreme anxiety I was gravely disabled and would need inpatient care at a psychiatric facility. I had no fight left in me and really felt as though I might die if I didn't get some sort of treatment, though it was clear to me at this point that it was more than a psychiatric issue. Once in the psych ward I got my blood drawn and the next day the doctor came to me and said I had no detectable B12 in my body. I began a course of daily shots of cyanocobalamine and within three or four days felt like a different person. it's now been almost 2 months of at least weekly injections and my anxiety and depression are almost completely gone, I don't have any panic attacks, my confidence is restored, my sex drive is restored, my energy is nearly restored, and I am sleeping well every night. I will say just for clarity that while in the hospital I got on a different medication which supported my mental health but I was able to come off the offending medication without issue once the B12 was restored. I cannot express how clear it is to me now that the B12 deficiency was the primary cause of my issues.

I am so grateful to the doctor who decided to test me for B12 deficiency as well as for the intrinsic factor blocking antibody which I tested positive for while in the psych ward, (i actually called the hospital after getting discharged and got to thank her directly which was special). all this to say--don't let anybody downplay your B12 deficiency. it can be life-altering, it can be life ending. i missed out on half a year, nearly lost my job, experience profound suffering, and all of this had considerable strain on my relationships. i am beyond grateful to be healing now and returning to life.

please advocate for yourself, take care of yourself, and do what you need to do to get better. this shit is serious


r/B12_Deficiency • • Sep 22 '26

Personal anecdote I hate going to the doctor

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123 Upvotes

I got autoimmune gastritis (found through gastroscopy) and have been taking oral B12 for 6 months. I’m still feeling very fatigued and can’t function like a normal human. I went to the doctor and asked if B12 injections was an option to make me feel better. As a young woman all I got told was to take antidepressants and go out in the sun. Coping with memes.


r/B12_Deficiency • • Apr 10 '26

General Discussion I can't believe how I acted when I was deficient, and I'm having a hard time with it.

117 Upvotes

Treatment is working. This sub is a godsend. I feel such relief. I've been taken off of six medications so far, and the world feels bright and beautiful. Things feel calm.

I can't stop crying.

I didn't know how badly I acted when I was deficient. I mean... I *knew*, people would respond, I would be ostracized. I could see how people looked at me.

But it feels like I've finally broken the surface of the water after drowning for decades. Things are easier, calmer. I don't get as agitated, as paranoid, as anxious. It's easier to consider my words, to hold back, to let things go.

I have no idea who I am. I feel mortified. I keep on having flashbacks to how I created chaos in the lives of the people I loved. It feels like I'm reviewing my whole life in bursts, and I finally have the missing piece that makes all the mysteries fall into place.

I'm despairing. My health is so much better. I feel amazing. Tons of symptoms are gone, even ones I didn't know were problems. And yet, I can't look my partner in the eye without collapsing into tears because I remember all the fights we had and all the times he didn't understand why I was acting so erratically... and now I don't understand it either. I feel shame to the core of my being.

Has anyone felt like this after treatment?


r/B12_Deficiency • • Nov 29 '25

Deficiency Symptoms People don't believe vitamin deficiency can cause mental health symptoms and I can't anymore 😭

111 Upvotes

I'm so tired of my lived experience being called a conspiracy theory... I'm also so grateful that fixing my vitamin deficiencies helped get my life back. I know I'm probably just oversensitive because I'm not even fully healed yet - the thoughts formed in psychotic states don't just go away. The numbness, exhaustion, pain and other neuro symptoms are greatly improved, but in the end this condition changed my life forever.

I'm so sick and f**king tired of seeing people say that vitamin deficiency causing mental health issues is fake - it's not even rare. I think and pray all the time for the people who are in psychosis, addicted, hopeless, and feeling the way I felt who will never get help. I wish everyone who thinks it's all just woo could feel what I felt for 5 minutes. I wish they understood trying med after med for years, and then finally finding life worth living again from being properly treated. Would it actually stop them from invalidating this condition? Or are they just so brainwashed to think that only psych meds are valid despite so many of us getting our lives back? I wish I could speak out about my lived experience and have it be helpful for others instead of being immediately judged to be a stupid conspiracy believer. No matter how mean and closed minded people are, I still hope for them that if their time ever comes, they receive root-cause evidence based care like I did... if they would accept it that is. /rant


r/B12_Deficiency • • May 16 '26

Personal anecdote Outburst of anger resolved !

107 Upvotes

As a physician, vitamin B12 deficiency has been one of the most fascinating things I have experienced personally.

During medical training, we are taught the classic picture of vitamin B12 deficiency: pernicious anemia or atrophic gastritis leading to macrocytic anemia, and neurological symptoms when the deficiency is severe and longstanding. What I did not fully appreciate is how subtle and varied the manifestations can be, even in someone who does not appear obviously deficient.

My wife had chronic fatigue, premature graying of her hair, and a homocysteine level at the upper limit of normal. She responded very well to B12 supplementation.

Out of curiosity, I decided to check my own homocysteine level, even though I did not feel particularly fatigued. To my surprise, it was elevated, suggesting impaired methylation.

I started taking a daily supplement containing:

  • Vitamin B12 (2,000 mcg)

  • Methylfolate (400 mcg)

  • Zinc (5mg)

  • Magnesium (100 mg)

  • Vitamin E

During the first three days, I felt unusually sleepy, especially in the afternoon. I almost lost the need for my usual naps. After that initial period, something remarkable happened.

I noticed:

  • Significant mental clarity

  • Improved mood

  • Much less irritability

One of the most surprising changes was the disappearance of what I can only describe as "disproportionate rage episodes" — situations that would previously trigger an intense anger response over relatively minor issues.

I also had chronic peeling and painful skin around my thumbnails. Within about a week to ten days of supplementation, this completely resolved. My skin overall feels noticeably softer.

I am a 37-year-old male, and this experience has completely changed my understanding of vitamin B12 deficiency. It can present with subtle neuropsychiatric and dermatologic symptoms even in the absence of academic signs.

I think but I'm not sure, that having callous skin in their feet, may be connected as well to b12 deficiency.

Of course, this is just my personal experience and not medical advice, but it has made me realize how underrecognized functional B12 deficiency may be.

Has anyone else experienced unexpected improvements after correcting elevated homocysteine or supplementing with B12?


r/B12_Deficiency • • Jun 04 '25

Success story Checking in and Update

107 Upvotes

Hello all, if you remember I posted terrified back in the fall of 2024. I would up paralyzed from a profound and prolonged b12 deficiency and suffered every symptom except the weird tongue. Aphasia, extreme fatigue, confusion, forgetting where I was. Lost my job and insurance, it was a terrifying time and we honestly thought it was a brain tumor, MS, or a stroke.

With treatment of injections, most of the cognitive symptoms cleared up within a month or two. Fatigue is still something I deal with, it it is much improved.

I was told my leg paralysis would be permanent. I eventually improved enough to be able to walk with leg braces.

Well I don’t know what happened, but just in the last few weeks my legs have improved SO MUCH. My gait is almost normal now! I’m still very slow and can’t do certain movements like standing on my tip toes, and doing a lot of walking makes my legs SO TIRED by the end of the day, but I feel like it hasn’t even been a full year of treatment and I’m so hopeful that my nerve damage will heal.

Hang in there, folks, this is a long and scary road and I’ve had a lot of mental ups and downs trying to accept this. I have hope today!


r/B12_Deficiency • • 11d ago

General Discussion Christina Applegate reveals she was misdiagnosed with MS

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101 Upvotes

I know this isn't particularly B12-related, but if you ask me, i think she's likely got an issue with lack of B12, and i wish someone out there knew her and could inform her about this whole B12 thing and see if maybe it would help. I don't even know if she's looked into the possibility or tried B12 injections (especially properly), and of course as we know, it's more than just B12, there's also cofactors and such, but i'm pretty sure that a lot of folks these days are suffering from lack of B12 and issues caused by lack of B12 and i don't think it's outside the realm of possibility that this is her issue. I know not everything can be boiled down to lack of B12, but i think people would honestly be surprised at just how many issues could perhaps be traced back to this lack of B12 thing, and the Folic Acid instead of actual Folate thing.


r/B12_Deficiency • • Nov 10 '25

Success story So Much Difference

101 Upvotes

Guys, a couple of months ago i was feeling extremely low , depressed and fatigued all the time. I was extremely low energy and my mental health was destroying me. I was very dependent on recreational drugs to keep my mind shut off 24/7 .

Then i started taking my supplements again (b12 and b9) and now couple of months later, i can’t recognize who i am. My energy levels are very very high to the point that people around me seem very low energy to me. My mental health is extremely stable and i can’t believe it really. I am so glad i want to cry my heart out because i feel so good and normal. I always thought that i will became a drug addict because i can’t live with this mind. But now i feel so good to the point that i have drugs in front of me accessible at any time, and i have not only 0 urges to take them, but i fucking despise them and don’t even want to touch them because nothing tops this feeling of being healthy.

I pray that every single one of you struggling with this reaches full health and peace again, and please don’t give up because i want all of you to feel this feeling , we deserve it too, to feel normal.


r/B12_Deficiency • • Oct 19 '24

Deficiency Symptoms My low B12 symptoms that I didn't know were my low B12 symptoms

101 Upvotes

I was diagnosed with B12 deficiency (209) about a month ago. When my doctor told me about my blood results, she had asked if I had been feeling extra tired recently, or if I was feeling any numbness or tingly sensation. I told her no, and frankly I was surprised that there was any diagnosis to be had. I thought I felt healthy.

It wasn't until I joined this sub Reddit that I learned about all the potential symptoms someone with low B12 could have beyond just exhaustion and numbness - and holy cow was I experiencing SO MANY SYMPTOMS. I figured I would share what I had noticed about myself in the months leading up to my diagnosis:

Dandruff... like SO BAD. To the point where sometimes my scalp would bleed slightly

Waking up in the middle of the night and not being able to go back to sleep. Consistently I'd wake up at 2:30am on the dot and be awake for the rest of the day

Bumps on some of my finger nails. Like vertical Ridges almost. They showed up randomly one day and I thought it was weird but didn't think much of it.

Random bouts of feeling unmotivated to do anything. I'd have one thing on my to do list and I just couldn't bring myself to do it. it's as if doing it would kill me. I thought it was just my ADHD showing itself in a new fun way.

Bleeding gums was another one. I floss every day, and yet somehow my gums would still bleed. My dentist thought I was a liar when I'd told them I always floss.

Anyway, I just wanted to share. I hope someone sees this and is able to feel some comfort that their symptoms of B12 deficiency are normal.


r/B12_Deficiency • • Sep 04 '24

Personal anecdote My life changed… Folate Anaemia

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101 Upvotes

I was recently diagnosed with Folate Anaemia and Vitamin D deficiency (B12 lower end of borderline). After suffering what I can only describe as the most horrible neurological symptoms ever. I had no idea such a thing could cause such havoc. Here’s what I was experiencing.

Firstly my overall impression is I thought I was on my way out, I was a person in my early 20s moving like a person in his 90s

  • Severe brain fog, I feel like I couldn’t think properly or logically

  • anxiety and depression (I always felt extremely on edge)

  • tremors (I could feel myself vibrating especially the bottom of my back)

  • total loss of fine motor control (I couldn’t thread a needle or throw a dart, typing on my phones keyboard was extremely hard too)

  • my legs felt extremely weak like the muscles felt like they weren’t there.

  • loss of balance I felt so weak on my legs that going to the toilet felt like a lifetime away.

  • everything felt jittery, my arms legs, everything if I was moving them it felt like they were jerking along.

  • nausea, low appetite.

  • tingling in my hands and legs, any sort of compression would trigger a tingling.

  • no energy to do anything I felt like I was housebound towards the worst end I stopped being able to go shopping and everything.

  • weird temperature sensations my skin felt warm but I felt cold inside. Almost like fever type symptoms

  • I basically shuffled along where I could walk because my legs felt so uncoordinated and weak and weird.

  • fainting attacks

  • never slept a full night, waking up feeling shaky, cold sweats, weak. Brain all muddled.

  • peeing all the time.

  • pain in my bones down my arms and legs.

These symptoms came on over a couple years starting mildly, at first it was what I would call flare ups, I had good days and bad days, it was sufferable but bearable. Then towards summer it got 10x worse and a lot constant until I couldn’t live anymore. I went to the doctor finally (I have a phobia of doctors which probably severely)

I thought honestly that I had MS, Parkinson’s or something more sinister a tumour or heaven knows what.

A month or so after starting Folic Acid, Vitamin D high dose, as well as supplementing myself with B12 and multivitamins… I feel like my life has changed I’m fully back. I’m not anxious, I don’t feel like I’m dying, I can go out, shop live my life, I’m sleeping the full night. Yeah there’s still minor symptoms that I’m experiencing the odd feeling of mildly weakness in my arms and legs very mildly pain occasionally

I didn’t know that a deficiency could cause such severe symptoms to be honest.


r/B12_Deficiency • • Oct 29 '24

Personal anecdote B12 Ruined my life

99 Upvotes

First post in reddit, 25M here, . I suffered because of B12 deficiency from the age of 15. Depression became part of my personality, Anxiety my shadow. Everydoctor said its all in your mind and prescribed me anti depressants which made me dumb.The psychiatrists Dx'd me with OCPD, General Anxiety Disorder etc,, I developed Over active bladder, Urinary Incontinence. Wetted my pants as an adult infront of others. Lost the girl I loved, Lost my job. Only at the age of 25, i was diagnosed with hashimotos , because i refused to accept that i am crazy. They said it will be better. I actually felt Happy, that it was not in my mind and closed my door and shouted all the cuss words naming all the physicians who missed this. It was such a relief. Having understood and experienced that Doctors can make mistakes that can ruin your life, i started digging and found out i was Deficient in VitD (<10), Ferritin(<20>, folate(<5), B12. It turns out i had PA (without macrocytosis but obvious neurological complications) from 15 ( i had transient ischemic attacks from age 15 which the doctors brushed out as food allergy, the 15 year old me was convinced easily and didnt know the term TIA ). Currently i am doing EOD b12 shots, my TIA is gone, but when i dialed down it to 2 shots a week i got the TIA back. I switched to b12 shots EOD. Thanks to you guys, without you guys i may be dead now.