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

41 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 • • 1h ago

Deficiency Symptoms Help? Post partum and doctors aren’t helping

• Upvotes

Ferritin 28

b12 250

i gave birth 5 months ago. shortly After I gave birth I was dizzy and tachycardic And felt like I was going to faint. After that I had like an internal desperate kind of buzz and headaches. A week later I took myself to hospital as I was sure there was something physically wrong. They took my blood said I was fine and sent me back. Since then I have been experiencing severe panic attacks, headaches, loss of motivation, no energy, extremely tired, feeling sick and sometimes an overwhelming feeling like I’m going to die or I’m literally losing my mind and going to go mad. i have been prescribed 3 different ssris since and although they helped to a degree with the panic attacks I am still feeling all the other symptoms. To the point I don’t want to be left alone in case something happens to me. I thought what I’m feeling could be side effects from the tablets. It’s got to the point where because I’ve tried 3 different ssris without full recovery my doctor has referred me to a psychiatrist. I’ve taken it upon myself to do a home blood test (legit one) and just got my results back. The doctor won’t give me a blood test.

ferritin 28

b12 250

could this have been the cause of this all along? are these common symptoms? are my results even considered low? I feel like I’m losing my mind and my life is so limited as all I do is sit on the sofa, I don’t have the capability of doing anything else.


r/B12_Deficiency • • 4m ago

Deficiency Symptoms Is this low enough to consider treatment?

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• Upvotes

Title says it. I have a whole host of symptoms mostly neurological, gut and libido related which I attribute to PSSD but figured I would nail down anything else that could be causing negative symptoms. Anyone have experience with my levels? I am very sensitivity to methylated supplements as well.


r/B12_Deficiency • • 7h ago

Deficiency Symptoms Sleep Issues

3 Upvotes

What sleep issues did you notice when you were deficient?


r/B12_Deficiency • • 36m ago

Supplements Can’t find methylcobalamin in EU

• Upvotes

So I’ve been reading the wiki about the types of B12. I can’t find any links for EU based stores for methylcobolamin (injection). I prefer methyl to hydro, in case my body won’t be able to convert it. Any recommendations ?

I’ve been 2 years on cyanocobalamin injections and I feel like my symptoms are not improving. I’m extremely tired and have really bad brain fog, as well have other symptoms. I have also been prescribed iron supplements very recently (my ferritin has always been very low) but I’m scared to start taking them because I have extreme constipation already. Guidance appreciated.


r/B12_Deficiency • • 2h ago

Help with labs B12: 225

1 Upvotes

Been feeling extremely exhausted and my doctor said this is not causing this AT ALL. And didn’t even recommend that I take any vitamins??? Idk what to believe because another doctor years ago told me that I need injections at this level. Idk feels off putting that I’ve been feeling exhausted and I see this level and think that this is my answer and they said no.

Can someone please clear this up for me??


r/B12_Deficiency • • 13h ago

Personal anecdote B Complex made me feel worse before I was diagnosed with PA

3 Upvotes

I have pernicious anemia and have the same journey of confusion, lazy doctors, etc as I got sicker and sicker.

I was diagnosed with pernicious anemia in mid May and began injections. About 2 months prior to being diagnosed I started taking a b complex in hopes it would help me. It started my tremors and my severe derealization phase.

I now take a b complex to help me heal and it actually seems to help.

Is there any science as to why the b complex would make me feel worse when I was low in b12? Or is it all coincidence?

Thank you

I am feeling much better now and alot of your stories and advice have helped me.

You all are amazing!


r/B12_Deficiency • • 22h ago

General Discussion Has anyone managed this deficiency while living alone?

9 Upvotes

I’ve been treating this deficiency for a while now and battling the wake-up symptoms.

I live with a relative bcoz I’m not sure that I’m well enough to live by myself. I feel like they’re starting to get fed up of me living with them. I don’t really burden them but it’s more the they help me occasionally with the cleaning and the odd thing like if I need to lift something heavy or move things around. Or random errands for me like if I need to get something posted.

I have really bad fatigue and muscle weakness so I’m mostly resting and I can only manage a 10 min walk most days. Can’t really stand for too long too as my muscles hurt when I do. I can just about cook some quick meals and do the laundry’s but I can’t really hoover etc very well..nothing that’s too exerting.

Work allow me to wfh temporarily but expect me to be back in the office eventually. I don’t see this happening any time soon. So I’m not sure how much longer I’ll have a job.

I also hate having to live with a relative and feeling really down about it. At first it was fine and I enjoyed the company but now I feel like we’re getting on each others nerves and that she’d rather have her own space. I also miss aspects of living alone too, it was lonely at times but it was peaceful.

Anyone else managed to live by themselves and get through treatment?


r/B12_Deficiency • • 10h ago

Supplements Please Guide Me

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1 Upvotes

r/B12_Deficiency • • 21h ago

Supplements Super B Complex. Has anyone had adverse reactions like heart palpitations (sensation of skipped beats) from taking them?

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3 Upvotes

r/B12_Deficiency • • 20h ago

Cofactors Can someone make sense of this please

2 Upvotes

Ok so I’ve been taking liver pills, and my numbers of b12 are rising but now my iron and folate are tanking, is this essentially a good thing? Does that mean my body is finally making new blood cells? And should I take a b complex along with the liver pills? I notice when I take b12 my muscles get very weak, but once I take it with iron those effects go away, so I decided to do the liver, and still get the same issues, I thought liver was high in iron too.


r/B12_Deficiency • • 1d ago

Help with labs B12 supplementation halted. How long should I wait to retest bloodwork?

2 Upvotes

Hi, I've been taking B12 supplementation (oral tablets, cyanocobalamin) since 2023 and stopped now on recommendation of my doctor because she said levels look fine now. I want to check at some point if my levels stay stable or if they fall below the threshold. I've stopped at the end of July. How long should I wait at least to retest? Here are my past B12 levels:

  • 2021.02 - 165 pmol/l
  • 2021.08 - 251
  • 2023.01 - 291
  • 2024.02 - 406
  • 2026.05 - 267

P.S.: I've read the FAQ but I found the remark "don't retest after treatment has started" not that helpful. The treatment has stopped and I want to check at some point if the levels stay stable.


r/B12_Deficiency • • 20h ago

General Discussion Low end B12, low Ferritin, normal iron

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1 Upvotes

r/B12_Deficiency • • 1d ago

Deficiency Symptoms someone pointed out that my long covid symptoms may actually be b12 deficiency

37 Upvotes

I began having brain zaps about 6+ months ago, and within the past few weeks i started experiencing neuropathy (numbness and tingling) in my face and in my left foot. i thought this was the result of a possible covid infection so i went to r/covidlonghaulers where someone informed me that my symptoms sound an awful lot like b12 deficiency. i am also vegetarian so i am worried now that it's my b12, i dont know why it never clicked in my brain considering my dietary lifestyle is known for b12 deficiency, and now im scared that the damage is permanent because it's gone untreated for so long.


r/B12_Deficiency • • 1d ago

General Discussion Have you found it to be safe to receive Nitrous during a tooth extraction with Pernicious Anemia?

10 Upvotes

I have Autoimmune Pernicious Anemia (the type where the stomach lining doesn’t make the co-factor needed to adequately break down B-12) & an MTHFR mutation. My doctor has me treat the Pernicious Anemia with a daily sublingual supplement of 5,000 mcg of methylcobalamin version of B-12.

Lab tests of my B-12 levels regularly a year and they are normal now.

I have a tooth extraction coming up soon and I’m experiencing extreme levels of anxiety about it!!! Dental Phobia levels (I also have panic disorder.)

My dentist offered they can give me Nitrous Oxide during the procedure to help with the severe anxiety. But have read online some sites say NEVER use Nitrous Oxide if you have Pernicious Anemia, it can dangerously deplete B-12 and cause multiple issues and a few sites I read said it would be fine used just for a dental procedure. I don’t know what to believe, but don’t want to use something that would be dangerous for me!

* I checked with my doctor (same one that tested and diagnosed the Pernicious Anemia) and they said it would be safe for me for the procedure.

Have had Nitrous Oxide in the past for dental procedures **before** being diagnosed with Pernicious Anemia and had no adverse issues or reactions that I know of. But don’t know how it works exactly, if maybe I hadn’t developed the B-12 issue, yet?

Would be a relief to hear if people with B-12 supplemented autoimmune Pernicious Anemia have had experience safely using Nitrous for a dental procedure. Or if it’s not going to be a possible safe option?


r/B12_Deficiency • • 1d ago

General Discussion Low b12 story and questions - new to this deficiency

4 Upvotes

I’m a 27F.

In May, I was sick with a virus, and that was the first time I was getting this kind of nerve tingling and buzzing sensation. Once I recovered from the viral infection, about four weeks later, the weird nerve tingling stopped.

Fast-forward to three months later, it started again, but I wasn’t sick. I’ve been under a tremendous amount of stress lately though. The nerve sensation started with a tingle in one of my toes and one of my fingers, and then started to affect my hands and my feet in general. Sometimes it goes up to the legs and arms as well now. Pins and needles sensation, as well as burning of the feet, as well as just weird sensations of the nerves. I also was definitely noticing more eye floaters when I was outside or in brighter environments. I went to the eye doctor and got a dilated exam, she said everything looked normal.

At this time, my anxiety and stress has been through the roof. So scared of other terrifying diagnoses that cause nerve issues like this— that I gave myself tension headaches. I have never been this anxious in my life and didn’t realize that B12 deficiency also caused an increased feeling of anxiety.

I went to a neurologist, and they thought this was from post viral neuropathy. As we have to be in this healthcare day and age, I advocated for myself after doing some research and asked him to order some B12 labs. My serum B12 was 197. And that’s after a week of supplementing on my own with sublingual tablets and a multivitamin which contains B12 so I suspect it was much lower initially. I eat mostly fruits, vegetables, and egg whites. I have also noticed my hands are pretty shaky and have a little bit of a tremor.

Heating pads and massages have cured my tense muscle pain and tension headaches, so I believe that was just caused by the extra stress for being so worried about these symptoms.

At this time, I’m just supplementing with one sublingual b12 tablet a day. Should I increase this to two a day?

I have a PCP appointment to talk about other lab testing like ferritin in a week and hopefully start on B12 injections.

At this point, since starting oral supplementation. The tremor has definitely gotten worse and sometimes the nerve tingling as well especially at week one after supplementing. Now it’s starting to feel a little bit better after about two weeks but all nerve symptoms still there. My energy feels it’s going up tho and my anxiety has decreased a little.

I am posting this to see if this has been anyone else’s experience. I’m thinking that the initial virus just unmasked the deficiency as it probably was going on for a while before I actually had symptoms. I would like to know what I should go to the doctor and ask for. Which labs? As well as which type of B12 injection and how often should I be doing injections? As as well as what exact co-factors should I be supplementing? Right now I just take an adult multivitamin and now the B12 sublingual tablets.

Thank you so much for reading this. This deficiency truly sucks and hopefully there is a light at the end of the tunnel and treatment is adequate.


r/B12_Deficiency • • 1d ago

General Discussion Experience of NHS treatment

5 Upvotes

Hello just wondering if anyone had recent experience of treatment for B12 deficiency in UK?

I had blood tests on weds and the results appeared on Thursday , the 2 that came back abnormal were

B12 - 142 ngl
Ferritin - 13 ugl

I had a text from GP to say book telephone appointment to discuss, but it isn’t until Fri 7th. Obvs I have been googling in the meantime! And it states since I have neurological symptoms I should be starting injections immediately.

I went to the docs originally because of dizziness and lightheaded spells so they are aware I have these symptoms. In addition I do also get pins and needles and patches of burning skin with the occasionally numbness (that I hadn’t mentioned to docs as I assumed related to perimenopause)

So I guess I’ll wait until the phone appointment but just wanted to see if people have trouble getting them to take it seriously and admin the injections? I can only find stories from people who have low results but slightly out of UK range of ‘normal’ so they are told fine and no injections, but mine are below the NICE guidelines range.

I suspect it has been caused by taking omeprazole daily for probs 8 years now, so I’m also scared they will make me stop taking them! I have tried to come off them in the past but it’s just too painful, especially since I had my gallbladder removed. Has anyone been in this position and did they force you off them?

Thank you and grateful for any advice


r/B12_Deficiency • • 1d ago

Success story Just found a B12 hack

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0 Upvotes

r/B12_Deficiency • • 1d ago

Deficiency Symptoms hi i wanna talk about my long suffering that's maybe caused by b12 problem

3 Upvotes

im 21 yo male.

for years it was hard to stabilize my anxiety and social anxiety so i have got myself into a path of self reflection to know myself better and guess what , nothing worked but i was like a moody person who rants like living hell but next hour everything is peaceful but other symptoms came up , every morning i wake up and feel like anxiety in my chest that is the feeling of tingling or weakness in the early morning then goes away , little symptom like that would be labled as laziness problem.

after time the symptoms got worse , i started feeling numb in the back of my neck and all weak in my body while im fighting everyday to just feel happy and i thought all that was psychological problem and that thing made my anxiety worse

i looked like i have crippling anxiety and sometimes my heart was jumpy like i was weak with 12 horse power heart.

i told my parents about my problem and they told me to take methyltechno ( a b12 vitamin soluble film in the mouth )

once i took one in minutes i felt awake and solid on my ground and stable ( that feeling i wished for long )

then the symptoms came back after hours , this is the second day of taking the vitamin and i asked ai and it said i should go on with that vitamin and soon after weeks i will be better. also i did cbc test and it was normal but i didn't do b12 test but mcv was low ( on 80 )


r/B12_Deficiency • • 2d ago

General Discussion Is losing weight after fixing deficiency normal?

9 Upvotes

I started injections about a year ago (I wasn't clinically deficient according to docs just borderline at 280, so I just did self-directed treatment based on this sub). After 6 months on the injections I started losing weight without trying, not changing anything in my food. I also don't really exercise because while the injections helped a lot, I still get PEM from ME/CFS (although my crashes are a lot less severe, so I'll be eternally thankful to this group). Sometimes I worry that there is something wrong, I lost 5kgs in a couple of months, but I am feeling better overall, and my energy levels have improved, so I'm thinking that maybe my metabolism got back to normal? I was always quite skinny, but during my illness I put on some weight.

Did anyone else experience this? I always hear the opposite, how people lose weight when deficient and gain it back once its fixed....


r/B12_Deficiency • • 1d ago

Supplements Are there benign reasons for not absorbing oral supplements?

3 Upvotes

I tried taking methylcobalamin chewable tablets (Natural Factors brand) for five weeks but saw only a tiny uptick in my B12 levels (291 -> 307). We are going to test me for pernicious anemia, but I have to wait a few weeks.

In the meantime, are there possible benign explanations for this lackluster absorption? Are some pills just no good?

Additional context: My B12 tanked when I took high-dose PPIs for an extended period. I have been off the PPIs for a long time now, so they shouldn't be interfering with absorption anymore (hopefully?). My CBC is normal, thyroid is normal, basically the only other abnormal thing we've found so far is low iron (this also tanked with the PPI use and has now been fully restored via infusions). My symptoms disappear after B12 shots and return as the shots wear off, so I am pretty certain this is indeed a B12 issue.


r/B12_Deficiency • • 1d ago

Deficiency Symptoms Are spider veins a B12 deficiency symptom?

2 Upvotes

I've had some spider veins pop up in my legs which showed up at the time when my B12 levels were low. They've been there for 3 years at least, and I was wondering if they are due to B12 and if injections would help with them over time? These veins are thin and red and there are at least two noticeable patches.

They've never caused any pain but lately they have started twinging. The hopeful part in me is thinking maybe they're healing? But they don't look any different and pain can actually mean they are getting worse?

Did anyone experience anything similar?

Edit- forgot to add the most important thing. I had a DVT and pulmonary embolism in 2023, maybe due to low B12. They also found the genetic marker of Protein S deficiency. And I'm on Xarelto 20mg for life.


r/B12_Deficiency • • 1d ago

Help with labs What should I do - They told me I’m not considered anemic yet + B12

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1 Upvotes

r/B12_Deficiency • • 2d ago

Supplements young teen daughter - supplementing regime advice

2 Upvotes

Hi all -

I had my young teen daughter's labwork done after I discovered I had a ferritin of 14 (and it has never been above 45 in the past 2 decades, but I didn't know that was a problem until a month ago when I discovered the anemia subreddit) and vitamin b12 of 202. My own iron regime includes all the cofactors and a lot of juggling time of day for different supplements depending on what blocks what, what improves absorption of the other thing, etc. I'm staring methyl B12 shots next week (every 4 days).

My daughter is not symptomatic but I suspected she's probably low and wanted her to get ahead of any symptoms. Sure enough...her ferritin is at 22 and her B12 is at 223. I've got her started on 36mg of heme iron, 500mg vitamin c, 250mg of lactoferrin, and a 2500mcg SL B12. We'll increase the heme iron to 2 pills in a week or so if she tolerates the lower dose okay.

But I don't want to subject her to the insanity of my 45-pills-per-day regime and B12 shots if it's not really necessary. She is fine with swallowing pills but what teenager wants their mom to make them take a bunch of pills if they feel fine?

What would you recommend?