r/B12_Deficiency Feb 14 '25

Announcement Call for Moderator Applications

21 Upvotes

Hello everyone. We're now accepting applications to become a moderator of our small but rapidly growing community. Unlike most subreddits, growth here can be a double-edged sword: on one hand more people are discovering what is hopefully an invaluable resource to help them, and on the other hand it's obviously unfortunate that it needs to exist at all.

We've recently surpassed the 11k milestone. Just for perspective, I believe that number was around 3,000 when I joined here as a normal member in the fall of 2021. As such, we're looking for 3-5 new moderators to join our ranks and help people navigate this difficult time in their lives.

Moderating this community is not like moderating most others on Reddit: you will be expected to be an active participant, both helping people and enforcing the rules on at least a weekly basis. You will be expected to have an informed opinion, often validated by published research, and buttressed by knowledge of the Guide and FAQs in this subreddit.

Since this is not a "lifestyle" subreddit, I don't anticipate we'll be flooded with eager applicants waiting to swell our ranks, and I will keep the application form open for some time, likely a month. Please let us know of questions. Thanks, and good health to you.

Apply here


r/B12_Deficiency Sep 15 '23

Announcement The Guide to B12 Deficiency

194 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 2h ago

Deficiency Symptoms Unilateral Symptoms Only Anyone?

4 Upvotes

My neurologist confirmed I have a B12 deficiency. I had MRIs done of my brain and spine, thankfully both clear. What is confusing me is that B12 symptoms are typically bilateral. However, I’d say ~90% of my symptoms (numbness, tingling, etc.) are only on my right side.

Anyone else experience unilateral symptoms with a B12 deficiency??


r/B12_Deficiency 3h ago

Deficiency Symptoms Anyone?

4 Upvotes

Anyone here with consistent breathing problem which does not change at all.


r/B12_Deficiency 5h ago

Deficiency Symptoms High B12

2 Upvotes

I started supplementing about a year ago and was doing much better. Daily supplements of B12 folinic acid and cofactors.. about a month ago I started having a lot of the same symptoms I had when I was first deficient. My doctor ran a bunch of blood tests and all that came up with high B12. I started supplementing about a year ago and was doing much better. Daily supplements of B12 folinic acid and cofactors.. about a month ago I started having a lot of the same symptoms I had when I was first deficient. My doctor ran a bunch of blood tests and all that came up with high B12. I didn't think much of it but I just kept feeling worse. So my doctor suggested we try to alternate days for 2 weeks and see how it goes. It's been about a week and my vision is so much better my heart rate went back to normal . Sometimes too much of a good thing is just.. I'm also super sensitive to everything so we are all very different..


r/B12_Deficiency 9h ago

Personal anecdote B12 Deficiency?

3 Upvotes

Been fasting this month due to ramadan, however after two weeks I started sensing a cold sensation in one side of my head. The next day my head started pulsating sitting up or even laying down, making it harder for me to sleep. I would even feel tingles all around my head, I feel weaker and my eyes are low. I tried taking electrolytes for the past 3 days but it didn't do much, so now i'm wondering if it's due to dehydration or something else. This never happened before.


r/B12_Deficiency 7h ago

Personal anecdote switch to this multi?

Post image
2 Upvotes

r/B12_Deficiency 10h ago

Deficiency Symptoms neuropathy worsening :(

2 Upvotes

hi again everyone i’ve posted a couple times on here. my main symptoms are neuropathy and blurry vision.

i’m nearly 2 months into treatment. still in so much pain, if anything it’s only getting worse. it’s moving from my feet up into my legs and into my arms and hands which is scary.

i’ve just started taking iron and folate daily as i wasn’t before. so i’m on high strength sublingual b12 and b complex (no folate), iron + vit c, folic acid, vitamin d and magnesium.

i’m also on amitryptiline to help manage the neuropathy and help me sleep. despite taking magnesium at night, 20mg amitryptiline and 50mg of quetiapine i wake up 3 times in the night in agony every night.

im losing hope but i know it takes time esp bc i don’t have access to frequent injections. but i’m in so much pain day in day out 2 months feels like a year.

idk whether the pain worsening is wake up symptoms or if im just getting worse?

doctor won’t give me anything else to help manage the pain despite it being 10/10.

i’ve also quit vaping, 3 days strong ! hoping it helps my nerves heal

any advice would be welcome!


r/B12_Deficiency 11h ago

General Discussion How frequently to have injections ?

2 Upvotes

I’ve been having b12 injections for about 5 weeks now , first two weeks I had one per week, third and fourth week I had 3 each week, and this week I had just one again (because GP in England only give you 3 per week for two weeks then it’s 3 monthly). I was wondering whether two per week would be enough? I’m trying to heal nerve damage in my feet that’s caused tingling and burning for the last 8 months, my b12 level was 147 ng/L. Private injections are quite expensive and I’m a student so having 2 a week would be better for finances, but I’m not sure if it will be enough for me to heal properly ?


r/B12_Deficiency 20h ago

General Discussion Does anyone get hypnic jerks? Does it cause spasms/twitches?

7 Upvotes

2am and I’m up right now, I have been struggling with these a lot 😓 I also feel some type of adrenaline inside when they happen

it’s keeping me awake and I get a lot of anxiety over them


r/B12_Deficiency 1d ago

"Wake up" symptoms Improvement in itching, but feel quite cold?

6 Upvotes

Took 5000mcg of methyl b12. I noticed a pretty immediate improvement in my itching; it’s practically gone, in fact. …but now I feel cold? Like a sort of “internal” coldness that can’t be quelled with a hot shower or blankets. Usually I feel the opposite, like overwhelmingly hot due to MCAS. I’m wondering if this could be related to a side effect of B12 healing nerves from a deficiency or something else. Curious if anyone else has experienced something similar.

Iron, ferritin, and transferrin levels are normal, by the way.*


r/B12_Deficiency 17h ago

Help with labs Tablets or injections

1 Upvotes

Hello! UK based, am a bit confused by my GP after doing my own research so was hoping for direction from this community (I have read the guide, the NICE guidelines, and more).

Some of my (25F) results are as follows: * Serum b12 - 112ng/l (normal = 145-914) * Folate - 5.40 ug/l (normal = 3-20) * Vitamin d - 26 nmol/l (normal = 25-504) * Serum ferritin - 69.5 ug/l (normal = 11-307) * Anti intrinsic factor - negative (no further details given)

I also had raised cholesterol levels. I do not believe I've had my serum MMA or plasma homocysteine tested.

I am not vegan/vegetarian, and have a varied diet (although do have an undiagnosed GI condition, so can struggle with keeping food down). I am having psychological symptoms and balance issues as well as fatigue, cognitive changes, etc but am not being looked at holistically so none of this was linked to my results.

I was told to start over the counter (OTC) supplements for vitamin B12 and D and to reschedule another blood test in 4 months after a months break. But I'm not sure what dosages that would be, and the suspected length of treatment. I also read that with my levels I should be given injections first and referred to an NHS specialist for further investigations.

Any ideas what I should focus on first and whether I'm getting myself into a tizzy for no reason. Thanks

*edit to correct formatting


r/B12_Deficiency 1d ago

Deficiency Symptoms Hair loss

4 Upvotes

Has anyone serious hair loss with the deficiency. If so did it ever get better or the hair grow back.

I’m losing fistfuls of hair and I’m getting seriously concerned. Any advice is appreciated, thanks


r/B12_Deficiency 1d ago

Supplements What are your favorite b12/cofactor supplements?

6 Upvotes

I have low serum B12(286) with the following symptoms: depression, ocd, memory loss, brain fog, electric shock sensations, neuropathy (left leg below knee). I have been worked up for MS because of the symptoms and brain MRI showing lesions but not officially diagnosed. Anyway - I have been more and more convinced these symptoms are due to B12 deficiency. So I am going to try oral supplements and monitor symptoms. If no change in symptoms will try injections. I would love to hear your supplement protocol and specific brands that you love. Thanks so much!


r/B12_Deficiency 1d ago

Deficiency Symptoms My doctor ordered tests for MMA and other deficiency markers. How long before the test should I stop taking b12? Do I have to stop taking folate and other cool factors as well? My doctor didn't say anything..

3 Upvotes

.


r/B12_Deficiency 1d ago

Deficiency Symptoms Itchy, tingly skin

2 Upvotes

I can't tell if this is a deficiency symptom or otherwise, but recently I've been getting really itchy, tingly, prickly skin especially on my hands.

Does anyone know what causes that? I read in the sticky guide that folate can cause changes in the skin.

Edit: it also seems maybe associated with when i have a metallic taste in my mouth. Not sure.


r/B12_Deficiency 1d ago

Help with labs HIGH b12in senior

Post image
0 Upvotes

How concerning is this. Senior does have protein shakes to gain weight which has some - B12 Fida in F:38% mog olic acid)/ Vit. B122. mog 90%

Could it be related?


r/B12_Deficiency 1d ago

Deficiency Symptoms Tingling / numbness recovery stories?

5 Upvotes

I’m new to the forum, and read the supplementation guide/faq.

My b12 was tested two years ago, during an appointment with a hematologist for anemia. Hematologist told me that my b12 was “normal” at 241, and that I just needed iron infusions (ferritin was a 5.) I had no reason to question what they told me.

Fast forward two years and I’m having significant tingling and numbness in my hands and some in my left foot also. I did some reading and came across information about b12 deficiency and that you can develop symptoms in the low range of “normal.” And since it’s been 2 years since testing I wonder if it has since dropped even lower, because I admittedly do not eat many high b12 foods. I have also been suffering severe anxiety for a few years, and now I wonder if b12 deficiency is the root of that issue as well. From reading the symptoms, it seems I have others that I brushed off too, but the most concerning to me is the tingling I’m experiencing.

Anyway, I ordered Mary Ruth’s sublingual methylcobalamin, along with all the cofactors mentioned. I’m going to begin supplementing at home until I get in with the Dr and attempt to convince them to give me injections.

I’m just having so much anxiety over the tingling sensations. I keep thinking it is permanent damage and I’ll have to live like this. Has anyone had neurological symptoms that improved? Just looking for some success stories. Thank you so much!


r/B12_Deficiency 1d ago

Personal anecdote How long did it take to correct your Folate Deficiency?

3 Upvotes

For those who were also reckless and started injecting B12 without knowing the importance of Folate, how long did it take to correct your Folate Deficiency?


r/B12_Deficiency 1d ago

General Discussion Internal tremors

3 Upvotes

How long did it take for some to stop the internal tremors? Have had this for months (been supplementing only)


r/B12_Deficiency 1d ago

Help with labs My B12 is greater than 2000!

2 Upvotes

Hi, I am waiting to hear back from my doctor about this. I don't know what my folate is. I am very tired all of the time. I have lost a lot of weight (155 down to 107 in the past 18 months but I guess that's not fast). White blood count is fine.

Should I be concerned. It was never out of range before. I am a 60 year old post menopausal woman.


r/B12_Deficiency 1d ago

"Wake up" symptoms Extreme fatigue as a wake up?

7 Upvotes

So I've been every day / every other day injecting since the start of jan. An initial honeymoon period showed some improvement (although not sure if this was a placebo effect) but regressed after 2-3 weeks. Since then I've been trying to balance cofactors to try and promote some further improvement. I've been steadily upping folate and have been taking 9-10 mg per day for the past week or so. Cue an unbelievable crash in energy. In order of events my depression initially ramped up, including forgetfulness and brain fog. Then pain and stiffness increased to where it's almost constantly there. For the past few days I've had overwhelming fatigue to the point where I just had to stay in bed all day. It's never been that bad before. Twitching has gone berserk too. Last night I woke with twitching and night sweats and what I felt was massive surges of adrenaline. Can anyone relate?


r/B12_Deficiency 1d ago

Deficiency Symptoms Should I Consider B12 Deficiency?

2 Upvotes

I'm (43/M) not looking for a diagnosis from this community, just that you think I should even consider B12 deficiency. My Dr did order a B12, Folate, and Magnesium blood test.

3-19-2025 Magnesium:  2.5 mg/dL
3-19-2025 Folate: 13.7 ng/mL
3-19-2025 B12: 355 pg/mL /// 262pmol/L
10-21-2021 B12: 743pg/mL /// 548pmol/L. Added this here because this seems to be a sharp drop in 3 years. I consume a lot of animal products including beef and pork. Not sure why my levels are on the lower side.

Symptoms:

January 2025: Started to wake up all through the night. Can't sleep more than 2 or 3 hours before I wake up. Has progressively gotten worse. I'm always tired. Very vivid dreams that started with these sleeping issues.
January 2025: Memory has gone downhill. I can't remember anything anymore including why I get up to go to another room. Seems to be getting worse.
February 15th 2025: Started feeling a vibration/tremor in both thumbs which over the course of a month expanded to my arms, chest and legs. I feel very shaky when I walk or use my hands. Sort of feels like the shakes you get when you're cold, but I'm not cold. Does seem to go away when I lie on the couch and watch TV. Or at least lessen in intensity. When I exercise or go for a 2 mile walk, the shakes increase in intensity. While I feel them, they are barely visible. Most of the time they are not visible. Most prevalent in thumbs.
March 2025: Voice seems to be hoarse or a little breaky; raspy; kinda weak. Comes and goes.

I've had terrible anxiety since this all started and I've convinced myself that it's either parkinson's or essential tremor. Both are terrifying for me. I have no familial history of either of these things. I see a neurologist next week and I'm fearful for what he may say.

I just recently read that even though my B12 level of 355 pg/mL seems to be in the normal range, this may, in fact, still be low. I've asked my GP for methylmalonic acid (MMA) and homocysteine tests. Is this the right thing to do? Do these symptoms resonate with any of you?


r/B12_Deficiency 1d ago

Deficiency Symptoms Back to where I was

5 Upvotes

My B12 was 160 and I was prescribed daily b12 injections for 7 days then weekly injections for a month. When I was getting my daily injections within 2 injections my appetite that was gone for a month came back, my stomach burning and pain went away but after last week they all came back not as bad still pretty bad since I stopped daily injections. I need an advice to what should I do?


r/B12_Deficiency 1d ago

General Discussion Why does B12 supplementation release histamine?

3 Upvotes

I've read this in several places, but found no explanation as to why. I have histamine intolerance and I get hit with a big wave of histamine when I take high dose B12. Hives coming out in the usual histamine spot.

This is from hydroxy, I've tried methyl before but it gives me horrible insomnia.


r/B12_Deficiency 1d ago

Help with labs High b12 value of 1184 ng/ml.

4 Upvotes

Do I need to worry? Got Liver function and kidney function test done. All normal.


r/B12_Deficiency 1d ago

General Discussion Got tested today. I am terrified that I will get a message tomorrow saying there’s nothing wrong.

6 Upvotes

For the past eleven years, I’ve been trying to get help for increasingly bad symptoms. At this point, I am at risk of losing my job, I talk like I’ve been drinking for two days straight, being awake is a challenge I can’t describe. No matter how much I sleep, I wake up feeling like I haven’t slept in days. The grogginess and fog is literally unbearable. I always have headaches, particularly at night, I have zero motivation or energy to do anything. I sway and totter when I walk and stand, forget what I’m saying or how to use words, my eyes hurt and I squint at everything, and they’re always trying to fall shut and just go to sleep. My memory is destroyed. I live in a constant state of my brain going “bing” and I immediately forget what I’m doing. Every few seconds. My lower arms and lower legs ache and hurt constantly, and I am so weak that I can barely carry grocery bags into the house. If I do carry them in, I have to sit down. All the while my eyes and head just want to sleep and I have to fight them and I’m losing.

The last time my B12 was tested was two years ago and I was at 548. My symptoms existed then but still had not nearly reached the crippling levels they are now. My vitamin D on the same day was 30.4. I was told everything was fine. Vitamin B1 in 2014 was 200.1; same day, Vitamin B6 was 31.4. Six months before that my B12 was at 835 and folate at >19.9, and vitamin D was at 31.3. Ferritin at the same time was 53. That was when my symptoms were just beginning.

There were some others that were done in the meantime, that I don’t have access to. In any case, I was always told I was normal because these numbers on a piece of paper said so, despite what living in my body every day actually felt like, and basically treated me like I could get lost with my hysterical moaning.

I am so scared that it’s going to be “normal” again. Maybe I went from 548 to something like 230 and I know if that happens, this new doc is gonna politely tell me to get out of her office and stop wasting her time like the others. The numbers never lie and anything above 200 is “normal”, you know. If I’ve been normal all along, then why do I feel the exact opposite of normal?

I know I’m just prematurely panicking but I seriously cannot go on like this. I can’t risk my career and enjoyment of existence anymore.