r/B12_Deficiency • • Sep 15 '23

Announcement The Guide to B12 Deficiency

371 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

39 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 • • 11h ago

General Discussion How do you deal with the emotional struggle?

19 Upvotes

I feel very sad. Crushing sadness. Everyone my age is living their life. I'm supposed to do so many things.. I had dreams and plans. Putting everything aside, just talking about a normal life that humans live. Meanwhile I literally forgot how to live. Just a normal life. Literally I am not feeling like myself anymore. This is so depressing.

I don't know what to do. No one will even understand what I'm talking about if I try to talk to someone. Because this is not me.

When I was better I was able to be true me, I was able to experience joy and hope too, do things, feel more present.. I'm not this depression, the dpdr, the loss of interest or ability to do anything. I am just existing, breathing and forcing myself to eat. I don't even feel my existence because of dpdr. I quit my job unexpectedly because I crashed and couldn't tolerate going to full time office work, I can't do the things I love like my hobbies, or move, or exercise, I don't know how to comfort myself. I forgot everything about living and lost everything about my life and my self as a person. I feel like my brain doesn't exist it's all fog. I don't have lots of hope either because I'm in an unknown place with my treatment, plan, figuring out what's wrong and working with doctors and it's been a long time. I also feel sad about the time passing like this. I don't know how to feel positive or find positivity anymore. But I need it so badly.

How could one not feel even more sad with the already existing depression that comes out of nowhere with the symptoms? How to deal with all this pain? How to find positivity? Any tips or ideas?


r/B12_Deficiency • • 4h ago

Cofactors Don’t know where my iron deficiency stops and b12 deficiency starts

5 Upvotes

For some background I have been feeling extremely tired since adolescence, I vividly remember the first time I felt this way and how crashing and out of nowhere it felt. Fast forward this year, maybe around April I hit the new low in such a way I declined so badly I couldn’t carry a conversation and I felt like I was borderline in stupor. Started new job and thought they might assume I was on drugs because sometimes if someone spoke to me unexpectedly I would blurt something unintelligible in response and overall I have no working memory, inability to focus and often look clueless as if I can’t process what is being said to me past 2 sentences. I also have hard time speaking in full sentences and finding words. I guess it’s good English is my second language so maybe they just assume I am not as fluent as I could be instead.

At some point I was at a huge loss and decided to put my money on b1 and b12 deficiencies without testing because I already had been taking some multi b vitamin supplements here and there. I ordered a combo shots of b1 and b12 and the first few times the difference was shocking. Through trial and error I was able to correct my b1 deficiency with shot and now I am fine on TTFD supplements but b12 is still a roller coaster. I have been doing b12 shots inconsistently and they are bringing a big relief within hours. My muscles stop hurting, tremors go away, brain feels slightly more capable and mood somewhat lift.

The problem is I have concurrent and confirmed iron deficiency for years since I started testing, who knows how long before. The issue with b12 is that it actually tends to worsen iron deficiency significantly. That’s the reason I have been rather generally inconsistent with b12 shots and hold them off until I feel horrible. As I mentioned they bring me noticeable release within hours to a day but it also only lasts few days. But in a meantime, within days after the shot I become even more pale than normal, seriously ghost white, and then I get hit with dizziness, shortness of breath and feel like passing out just from regular walking. At some point I started doubting that I might be having a heart attack and decided to go the ER if it doesn’t ease the next day but it slowly did until the next time. So today I am feeling absolutely horrible again, my mood is horrible, I have hard few weeks at work and I can’t get myself to do things and then focus on them and I might end up doing the shot. But I am in my uber white looking moment and felt like on the brink of passing out few days ago at the mall so I am questioning myself if it could be more of an iron deficiency symptoms at this time and b12 shot would temporarily mask it but somehow speeding up utilization of the little iron I still have in me? I can’t find any scientific resources to confirm that doubt though.

Anyhow, one ray of hope is that I am going for the first iron infusion next week, small dose but the doc said we can do more if needed, but I still hope that even this small dose will give me some minor relief.

Edit: I forgot to add that recently I reliazed that despite all this it does seem that my brain is slowly “waking up” and I can speak in sentences more on occasion for the first time in months.


r/B12_Deficiency • • 4h ago

General Discussion How much do you spend a year on B12 supplementation?

3 Upvotes

Injecting even weekly adds up fast. How are you EOD folk managing? I know I need to treat more but I'm having difficulty affording that kind of regularity.


r/B12_Deficiency • • 18h ago

Help with labs Thought I was maybe deficient, took supplement. Pls no judgement, just need advice.

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12 Upvotes

So listen. I got a bunch of labs that were off, and even my uncle was concerned about them. Even besides the b12. i occasionally take vitamin 12 Kirkland signature 5000mcg methylcolabamin form. I take one tablet and dissolve it under tongue. I don't even take it everyday sometimes. Off topic , does anybody recommend any subs I can post my labs on for insight? My PA doesn't care if live or die lol so I'm gonna switch to a MD, and I started seeing specialists who refer me to more specialists. I dropped the b12 of course, but what the hell could cause this?? I even have been taking Famotidine and other PPIs like omeprazole/pantroprazole long term which is why decided to take it, since those deplete natural b12 levels.


r/B12_Deficiency • • 9h ago

General Discussion Taken Methylcobalamin for 20 days with No improvement. Does it rule out B12 deficiency?

2 Upvotes

I am 22M. I have been suffering from a chronic fatigue with slowed cognitive ability. I still don't know the true cause. I have done multiple tests and visited multiple doctors. I am currently treating it as a psychiatric problem. I saw a GP one month ago and he told me everything is good but you should do a B12 test to rule it out. However, B12 test was expensive. So, I decided to take supplement. I have taken Methylcobalamin 1500 mcg for 20 days and noticed no improvement at all. Does it rule out my B12 deficiency?


r/B12_Deficiency • • 10h ago

Cofactors Folinic Acid 800mcg + Folic Acid 200mcg?

1 Upvotes

Fellow B12 survivors,

Would this dose solve a probable folate deficiency and also ensure that a B12 EOD injection can be done while maintaining proper folate levels?

And is 200mcg Folic acid safe regarding UMFAS?

Thanks!!


r/B12_Deficiency • • 1d ago

General Discussion Getting ready to self inject for first time

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64 Upvotes

I received these items from b12supplies.com. It’s the type of bottle I have to break. The syringes come with needles. It’s a 1ml syringe and 29g needle. I feel like I need a whole different syringe with a filtered needle? What should I order so I can start using these b12 ampoules?


r/B12_Deficiency • • 21h ago

General Discussion Should I take B12 Vitamin?

7 Upvotes

My doctor advised me to “take B12 if I want to” but she said it will not gonna make any difference since my B12 level is 295 pmol/L as shown in the blood work.

I struggle to remember my lectures in university, I cant concentrate and my eyelid move on it own sometimes like twitching. I study everyday and night but “X” and “Y” are not getting in my head for some reason. Also if I remember “X” and “Y” information, the next couple of hours they are gone.

My doctor said, I can take B12 and Magnesium over the counter. Should I take them ? What do you guys think and what is the best B12 brand. Thank you.

I do not know if taking B12 and magnesium will gonna be a good idea since I have GERD, OCD and Anxiety.


r/B12_Deficiency • • 1d ago

Supplements Feeling miserable

4 Upvotes

Became more and more tired over the summer and thought it was caused by long term use of propranolol, GP suggested blood test when discussing weaning off it. Results came back as deficient in B12 at 114 ng/L so given B12 tablets plus further blood test to investigate the reason, which have come back negative for celiac and pernicious anaemia so no idea what’s causing it. Despite saying to the GP that I am now tired 24/7 even after a good nights sleep, loss of appetite, developed a tremor in both hands, and now even after the flu jab cannot shake a cold for over 3 weeks, she just said the protocol is to keep taking the tablets and do another blood test in November to see if my levels have risen. Maybe I am being inexperienced and grumpy but what’s the point in that if I still feel shit after 5 weeks of taking the tablets and they don’t know the cause of it? Has anyone felt better after the 5 weeks point of taking tablets? Any advice massively appreciated that there is an end in sight!


r/B12_Deficiency • • 15h ago

Supplements B12 195ug

1 Upvotes

I got my test results back and my b12 is 195ug at this point t my symptoms are grey hair, hyperpigmentation,i had mild tingling too with brain fog and. Mood swings ,which supplements should i go for ??😭😭

Suggest some within affordable range and avilable in india


r/B12_Deficiency • • 1d ago

"Wake up" symptoms How much would a B12 deficiency explain?

6 Upvotes

I got a new PCP who is a NP and she had me do a full set of tests including B12. Most of it came back normal except cholesterol (which is nothing new), my calcium, and my B12. And my B12 in particular startled me - it was at 198. I went looking back at some old tests and it looks like its been steadily decreasing - it was 316 in 2021 and 236 in 2024. I have and continue to eat plenty of meat. Hence why cholesterol. (I'm freshly turned 36F for reference.)

I went to this new doctor because my vision has been blurrier and my hypersomnia has been almost unmanageable. I've been perpetually tired basically forever. Even as a kid I remember feeling sleepy most of the time.

I can't go back and test my past self. Is it possible this has been the issue basically my entire life?


r/B12_Deficiency • • 23h ago

Help with labs follow up labs?

2 Upvotes

I've been doing EOD injections for two months now and my provider insists on labs. I definitely want to check potassium, iron, & ferritin. What other labs should I request? (I'm in the US.) Thanks!


r/B12_Deficiency • • 1d ago

Deficiency Symptoms Told I’m not B12 deficient

5 Upvotes

First I’d like to acknowledge how helpful I’ve found the information available here. For context, I have been experiencing the following symptoms:

Numbness and tingling that started in my feet (first noticed with my monthly cycle) - now randomly throughout my body
Muscles spasms, twitches
Sometimes I wake up with a numb hand or foot that goes away once I work it out
Shocking sharp pains down my front shin (one day only)
Sometimes I feel like a have a bruise but there’s no bruise
Joint soreness
Mouth sores
My tongue feels too large for my mouth
Sometimes loss of appetite
IBS
Ringing ears
Blurred vision ( recent eye exam has confirmed my vision hasn’t changed and my optic nerves are ‘very healthy’)
Restless legs
extreme fatigue, muscle soreness)
Brain fog
Sensitive teeth

My last round of blood work was done at the end of June. My ferratin was low at 23 iron was 13, vitamin D was 63 and vitamin B was 233.

I was told my ferritin and iron were low but would not be prioritized for a hematology visit because my hemoglobin was ‘okay’ at 124. I was willing to pay for iron fusions at a private clinic which I did. My GP also prescribed me vitamin D supplements which I just finished. I feel like the infusions helped slightly but my shortness of breath is creeping back as is my fatigue. I disagree with my GP and feel as though my B12 is low, possibly deficient and that there’s a correlation between these three areas. I’m due for more blood work now that my infusions are over (I was told 3 months after my last blood round of blood work).

I’m of course going to advocate for further testing of B12 and treatment. I’d appreciate thoughts from this group on my results and symptoms. Am I B12 deficient? What are questions I should be asking my GP? Other considerations? I’ve started to go down other rabbit holes of other things that could be wrong…


r/B12_Deficiency • • 23h ago

Deficiency Symptoms Hair shedding all over?

2 Upvotes

First of all, this is not a troll post in any way.

Has anyone experienced this? For maybe the past 2-3 years, I (20M) have been losing hair from my scalp, body but probably most significant is the amount of ass hair which I lose per wipe when I go to the toilet, I seem to lose around 20-30 hairs on every wipe (when I have counted) and it doesn't seem to be going away any time.

I've read online that it could be Chronic Telogen Effluvium, but I didn't have any deficiencies and my blood levels were normal, the last time that I had them checked. The only thing worth of note is that my mother has a genetic 'active b12 deficiency at the cellular level' and it's possible I could have inherited it, but as I've been told online it's highly unlikely for b12 to be the driving cause of it.

I shared a lot of symptoms with my mom, but she hasn't ever experienced any shedding in terms of her hair. I think for me it definitely started around 3 years ago. I most likely have male pattern baldness, but I seem to thin from everywhere on my scalp and my hairline hasn't receded and there isn't any crown spots at the minute.

I'm in the process of trying to get a MMA test done, I did an intrinsic antibody test and a regular b12 level test and they were both came back normal. For my mom, she had these tests done many years ago, but only a MMA test revealed it.

Any help on this would really be appreciated, as any doctor I have asked is bewildered and doesn't seem to know what it could be.

Thank you


r/B12_Deficiency • • 1d ago

Deficiency Symptoms B12 / B1

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2 Upvotes

r/B12_Deficiency • • 1d ago

General Discussion Testing

2 Upvotes

So i took an odf sublingual supplement that has 1000 methylcobalmin and 1000 folic acid and some other b vits in the complex and unfortunately dr put me on them before testing now i want to test because other drs dont believe iam defficint and the issue is that i cant self supplement because i have suspected malabsorption issues after gastritis and antibiotics so how long should i wait without supplements to test levels


r/B12_Deficiency • • 1d ago

Cofactors Are my cofactors sufficient for recovery?

3 Upvotes

I got an initial blood test with b12 at 327 and serum iron 11.2/ferritin 44. I had just started taking multi-vitamins that week, so may have raised serum levels a bit. I had deficiency symptoms of fatigue, brain fog, clumsiness, unrefreshing sleep, angular cheilitis, tingling hands/feet/spine, numbness in calves while exercising, depression, brittle nails/hair. I probably had these symptoms 6 months-1 year prior (slow, gradual onset).

I started taking 325 mg iron, 500 mg vitamin C, and 1000 mcg of sublingual b12 daily per my doctor's instructions. After 2 months of this and doing more research, I contacted my doctor because I was concerned by the neurological symptoms. I got blood tests for celiac, intrinsic factor, H pylori, folate, b12, iron. They were all negative/normal (b12 very elevated obviously, ferritin 54). Doctor said keep taking iron, vitamin C, b12, but take a multi-vitamin with better folate. Doctor didn't support IM injections.

I want to know if my cofactor protocol is sufficient. I am experiencing wakeup symptoms of worsened fatigue, brain fog, depression, vibrations/buzzing/tingling pretty much everywhere, occasional nerve pains and brain zaps.

Current protocol (daily):

-Thorne's 2/day multi-vitamin

-3-5 sublingual cyanocobalamin b12 dissolved over 10-20 min

-325 mg iron (ferrous sulfate)

-200 mg magnesium glycinate

-500 mg Vitamin C

-try to eat 1-2 bananas/day for potassium, eat salt on foods regularly

Thanks in advance for any help! This has been a scary and trying process, hoping to recover over time.


r/B12_Deficiency • • 1d ago

"Wake up" symptoms B12 level of 83 - 6 loading injections enough?

3 Upvotes

I had a B12 blood level of 83. I think a deficiency is below 150. I started getting migraines this year and have generally had low mood for a long time. I had a very low B12 diet in the past 5-6 years (no meat, eggs, dairy, fish etc.). I was also low iron but not deficient. No anemia.

Other than that I didn’t notice many symptoms. It was the migraines that made my GP test for B12. They tested for PA after I’d already had 4 injections and said I don’t have it. I feel dubious about that.

I‘ve now had 6 loading injections and I felt better for a bit but now I feel worse than before - so many intense feelings and emotions and my lips and tongue are tingling. Is this normal? Should I have more injections?

My GP has said they won’t give me any more. I have been taking oral supplements which they said should be sufficient. I feel worried about how low my level was.


r/B12_Deficiency • • 1d ago

General Discussion Gave up after taking 5mg daily with no effects. Anyone here taking higher doses?

1 Upvotes

I was deficient at 265, confirmed by getting mma and homocysteine tests, and I started taking 5mg sublinguals daily. All self diagnosed of course... I have mild neuropathy, and a slew of other symptoms. I didn't finish the 120ct bottle yet, but I ended up taking a break after about a month of little to no progress because I was losing hope. I was also taking a multivitamin alongside it to help cover cofactors. Some of my symptoms seem to only have worsen since, specifically my mental health. I keep being told that I'm depressed, both by the RN and neurologist that I saw. I can tolerate physical pain but having my mental state plummet like this is something I cannot manage and I'm afraid where it could take me. I'm done with doctor visits tbh, and out of desperation, I'm thinking of upping my dose to 10mg-15mg a day, maybe more. For whatever reason it never occurred to me to take more because I always assumed 5mg should be the limit.

How many of you have taken 5mg with no success? And has increasing your dosage helped at all?


r/B12_Deficiency • • 1d ago

Help with labs Syrum b12 gone up active still very low??

1 Upvotes

My b12 has been low for over 2 years, very low. After advice from (useless gp) to raise with food, I found this group and added b12 drops then low dose injection as all I could tolerate. Was very worried it wouldn't go up as it hadn't with food or drops. It's going up but only the syrum b12 active is still low.

Active b12 is 30pmol syrum b12 is now 270.

I don't understand how one has shot up but the other has stayed the same.

I don't feel any different yet and still have symptoms but I'm very pleased it's finally going up.

Any advice gratefully received my Folate is 5.5 and I don't supplement. I eat potato and drink coconut water for Potassium. Iron is also OK and higher end of range.

It's like the injection of b12 is in my bloodstream but not actually doing anything. I do realise it takes time. I had my blood test done privately so I could measure both b12 levels Thanks


r/B12_Deficiency • • 1d ago

General Discussion Crossposting but asking about B12 instead: Has anyone’s LDL Cholesterol improved after fixing B12 levels?

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2 Upvotes

r/B12_Deficiency • • 1d ago

"Wake up" symptoms B12 - Help

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0 Upvotes

r/B12_Deficiency • • 1d ago

General Discussion Miserable rn:(

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1 Upvotes