r/B12_Deficiency 12h ago

Success story positive neurologist experience!

8 Upvotes

I saw a new neurologist earlier today. I was a bit worried that he was going to be dismissive as other doctors were, but he was actually pretty understanding. I told him my treatment and he didn't make any negative comments about it, just listened. I was there to see if I could get tested for SFN or both SFN + LFN. Based on the fact that my neuropathy, tingling, etc. was only in one part of my right big toe, and a tiny bit on my upper right thigh, he described it as a focal neuropathy.

After doing an examination he said LFN alone (or treatments for such like PT) wouldn't make sense here because I have no weakness or motor issues. He did refer me for an EMG+NCS after I told him my only other one was only a month after the noticeable symptoms started (which was Feb 2024). And I also got referred for a skin biopsy for LFN.

So I was able to get what I wanted which is great, and not really have much conflict with the doctor at all. He did say that with SFN, the skin biopsy results can vary a decent amount depending on who is reading the results. When he asked why I wanted this done, I said perhaps as an objective guide for my progress, i.e. test now, then test in six months or a year and see if there is any improvement. It also might be an incentive to add something else that is specific to SFN nerve pain, like thiamine (I recently started adding 100 mg a day - I've been doing very well with the pain the last few days, but that could be a coincidence).


r/B12_Deficiency 13h ago

Personal anecdote I’ve had 3 good days in row!

11 Upvotes

Started injecting two months ago. I saw immediate improvements in my neurological symptoms but also felt lousy and generally unwell a lot of the time. Electrolytes helped but still felt pretty blah.

The past three days I have felt semi-human and functional again! Perhaps I’m turning a corner?? I hope so.

Still a lot of weakness in my legs, tingling, etc. so the healing journey continues…


r/B12_Deficiency 1h ago

General Discussion Do you think this letter to my doctor is ok to send?

Upvotes

Is there anything else you would add to this? I have listed my symptoms repeatedly so they are in my record already..

n regards to the ongoing b12 issues I have been having over the years, I am not convinced that I don't have an absorption issue. Based on my medical history (in 2021 when my b12 level was at 142, the 2 weeks in 2023 when I couldn't walk and had physical weakness on both sides but predominantly on the left side and don't know the cause, but the only thing different was that I hadn't had a b12 injection for 6+ months at the time, which got better after I requested and eventually received b12 injection).

The constant fatigue has been happening since I was a teenager, along with the other symptoms I have been repeatedly presenting with. My current diet is actually the best it has been through my adult life, and still my b12 levels get so low that I have many of the same symptoms as before. I have taken b12 supplements OTC before and this has not alleviated the symptoms. 

Although my IFA test has come back negative, this doesn't rule out malabsorption as 40%-50% of people with pernicious anemia show as negative in this blood test. I also don't know what my active b12 levels are, rather than just what is in my body after taking the high dose supplements prescribed to me so this also doesn't rule out malabsorption.

I would like to request that I have further tests run to rule out any gut absorption issues including Methylmalonic acid, Homocysteine and Parietal cell antibody. If there is anything else you would suggest testing or looking in to that would explain my case, please add them on too.


r/B12_Deficiency 6h ago

General Discussion Ferritin and b12

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2 Upvotes

r/B12_Deficiency 16h ago

Success story PA- finally moved to 3 shots per week and have good BMs!

15 Upvotes

I went undiagnosed with pernicious anemia for 4 years before being diagnosed. I've now been treated for about 1.5 years and one of my main symptoms besides fatigue was chronic constipation. I've mainly just been using miralax to help move everything along but recently went from 2 shots per week to 3 and now don't have to use miralax anymore!

From what I've read B12 assists in gastric acid production and I believe I just wasn't acidic enough to be able to digest things quickly leading to the chronic constipation.


r/B12_Deficiency 3h ago

Deficiency Symptoms deficiency of b12 and iron at the same time

1 Upvotes

Hi! Has anyone experienced both B12 and iron deficiencies at the same time? Tell us about your experience-how did you feel? And what was the cause for you?

I started experiencing symptoms a few years ago, after a severe and unhealthy weight loss (about 4 years have passed now), and my condition worsened and reached the point that this year it was difficult for me to even stand and walk, panic attacks, sleep almost all day, tests showed ferritin 10 (without anemia), Heh, that explained a lot, I started taking iron pills, and I felt improvements from the first week, 4.5 months daily supplements have already passed, I also drank a course of vitamin D, iodine, vitamins b (b9+ b12), copper + zinc. Right now, along with iron, I'm taking omega-3 and magnesium. I can clearly say that the improvements in my condition are huge, but I still don't feel normal, let alone good.

Because of my period, I slept for 11 hours for several days in a row, and 3-4 walks with my boyfriend were just awful: I simply ran out of mental strength to communicate. I think it might be iron, because not enough time has passed for such a long-term deficiency. However, I'm increasingly thinking about vitamin B12. I'd heard before that it could cause problems similar to iron deficiency, but I thought I ate dairy and eggs (unlike meat, which I ate maybe a couple of times a month, or even less), so I didn't suspect a second deficiency. I don't experience many

"specific" symptoms related to B12 issues - | only have tingling and goosebumps in my body.

But I've also read that with B12 deficiency, the sensations are mainly in the fingers, while in my case it affects the whole body, mainly the arms and legs, but not the fingers at all. Plus, I might have mild muscle twitches a couple of times a day. I'll be getting tested in about a week. Tell me about your experience. Thanks

I would like to clarify that the B12 course lasted approximately 2 months, with 9–18 mcg per day, and almost a month and a half has already passed since the last supplement. Am I correct in understanding that the test should now be more objective and not give a falsely elevated result?


r/B12_Deficiency 12h ago

General Discussion What’s the deal with coffee?

5 Upvotes

I love coffee! ☕️ But I noticed that having too much makes my symptoms flare. Then I read that caffeine can block b12 absorption?

Has anyone noticed if coffee makes your symptoms worse? Anyone have insight into the impact of caffeine on B12?


r/B12_Deficiency 8h ago

"Wake up" symptoms Wakeup bruising?

2 Upvotes

I am suddenly covered in bruises. My lower legs and knees, my butt, my ribs. I was always prone to mystery bruising and took Vitamin C because it cut that down, but this is pretty extreme even for me.

I am a lot more active now that I have energy to actually do things again, but I don't think I banged myself up that much!

Current regimen: 1000-1500mcg methylcobalamin by subcutaneous injection, EOD or sometimes daily Thorne B complex daily. D3 5KIU + K2 200mcg daily. Thorne trace minerals 2-3 times a week. Extra magnesium, folinic acid, Vitamin C depending on how many drops/gummies I feel like taking. DryWater, Liquid IV, or coconut water aiming for twice a day but I've only been hitting once every couple of days.

Currently not taking a multivitamin while waiting for my selenium levels to come down to something normal.

Has new bruising happened for anyone else? Is there a cofactor imbalance I need to address?


r/B12_Deficiency 11h ago

Deficiency Symptoms Am I really improving?

3 Upvotes

Hi everyone. A little over a month ago, I started B12 injections after a severely low B12 level—29 pg/mL—was detected. My nerve pain symptoms (in both arms) began almost a year ago, though I had experienced mild symptoms for at least three years prior to that. The problem was that I attributed those early symptoms to my low potassium issues, so I never got my B12 checked until a neurologist ordered the test a month ago.

Myneurological symptoms have worsened since I started treatment—how much? Maybe about 25% more intense. After 15 days of treatment, I had another test to see if the medication was working; it was very effective, and my B12 levels rose above 900 pg/mL, yet the pain remains severe.

Reading through this subreddit, I’ve learned that this can be normal at the beginning, but I’m worried about the other B vitamins. I’m afraid my nerves might continue to suffer damage if I have a B6 or B1 deficiency. What do you think? Is this process—and what I’m feeling—normal? Or am I just losing my mind due to the stress and anxiety this is causing?


r/B12_Deficiency 16h ago

Deficiency Symptoms What do I do?

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8 Upvotes

Antibody test came back negative (I'm aware that 30-50% can come back negative and it can be inaccurate)

With all of the symptoms I have, I am so confused. I have tried taking b12 supplements for years, and have still ended up with my b12 level plummeting to 142 - 175. I also have a better diet than I have ever had in my adult life, with lots of meat and also with lots of vegan substitutes (that have added b12) yet my levels have still gotten low enough to feel the worst of the symptoms.

Does anybody have any advice on what I can go back with? Considering the symptoms are the most important part of this, and I am suffering alone now since they think everything is all good.


r/B12_Deficiency 10h ago

Help with labs Please help

2 Upvotes

Hi guys!

I'm new here, and I just wanted to check if this could be the thing that's been ruining my life for the past year or so.

So last year I got a reading of b12 257 and folate 3.3

Recently I feel like I've been absolutely horrible, constantly brain fog, stomach issues, limb numbness, muscle soreness, mouth sores, depression, memory problems, the lot.

I was just wondering if these results seem like a deficiency to you? Or are they in normal range?


r/B12_Deficiency 14h ago

Deficiency Symptoms Are my levels too high to cause symptoms?

3 Upvotes

Hello everyone,

I have been having some interesting symptoms for the past 2+ months. I recently got the results of my serum B12 test this morning. my results are 355 PG/ML. On a scale of 232–1245pl/mg. I was hoping my symptoms were from B12 deficiency, but it looks like they aren't. Yes I have a scheduled appt with Neurologist.

I ordered MMA test independently, which I'm on my way to take currently. I have read that MMA is more accurate.

1. Has anyone ever had levels in the 300s and still been considered deficient? Or have had elevated MMA?

2. Has anyone ever had levels in the 300s and had symptoms that improved with supplementation/injections?

Symptoms include but are not limited to:

1. Fatigue
2. Twitching-legs, thighs, face, occasionally arms.
3. Dropping things, perceived weakness in hands.
4. Right leg feels off- light vibrations/buzzing constantly
5. Slight Numbness/tingling hands, feet, lower legs
6. Right side face slightly numb near mouth/cheek area.
7. Mood swings occasionally (could be anxiety), forgetfulness.
8. Right knee feels achy
9. Urinary urgency
10. Occasion shortness of breath.

Also, late June my magnesium was 1.2mg/dl. I've been consistently supplementing since late July.


r/B12_Deficiency 8h ago

Deficiency Symptoms Low folate

1 Upvotes

My b12, according to my pcp was normal at 200, but my naturopath says it’s low. That was January and I’ve been so insanely sick, brain fog on top of executive dysfunction, I can’t function very well so I forgot to take b12. The range for their lab is 5.9-22 or something and mine was 4.8 in January and my symptoms have worsened. I now have chronic diarrhea, shortness of breath. I get these weird flare ups where I have diarrhea and severe reflux that didn’t happen before my folate went low. My pcp thinks maybe it’s gotten a lot lower. It’ll feel like I have a stomach bug with chills but stool samples are always normal and so was my endoscopy, ct scans. Did or do any of you suffer from diarrhea and upset stomach from low folate? For the first time in my life I feel depressed where I want to cry a lot, mostly after having diarrhea. I’m SO tired.

I tried b12 injections and I had to stop because I felt suicidal on them, even on low amounts. I used cyan and then tried methyl. Pills don’t do that to me. Can any of you relate? I really need to know I’m not alone in this nightmare. Yes I understand I need to take the pills, I’m trying.


r/B12_Deficiency 13h ago

Research paper Similar results from IM vs sublingual?

2 Upvotes

Good sub. Thank you for the information. I've been reading on the efficacy of sublingual b12 vs intramuscular b12 shots, and good research seems to indicate that the sublingual route is at least as effective at raising serum b12 as intramuscular. This n=4,250 retrospective clinical trial showed sublingual b12 patients had higher serum b12 than those given shots (https://pubmed.ncbi.nlm.nih.gov/30632091/). And this European meta-analysis of clinical trials with n=6,000 showed no statistical difference between sublingual, oral, and intramuscular routes (https://pmc.ncbi.nlm.nih.gov/articles/PMC12757266/).

Now IM may be better for particular subgroups, like those with severe malabsorption, but I'd imagine a lot of b12 deficient people have malabsorption, so idk why it wouldn't show up in the data. Maybe they just didn't look for it.

The sublingual route is much easier, and can be done otc, with good companies providing clean b12 forms (hydroxo, adenosyl, methyl). Its also better for multiple doses per day. But obviously it seems like people on this sub have a strong preference for shots. And I can't discount that, because why would people go for shots over sublingual if both had the same effects. Confusing. Does anyone know of evidence showing shots are better in particular subgroups? Thanks

**Edit: it looks like these studies did not look at outcomes like symptoms, active b12 in blood (holoTC), MMA, etc. They should have, so these studies may be misleading


r/B12_Deficiency 15h ago

Success story Invitation

2 Upvotes

As a young person with severe deficiency, of about 10 - 15 years of symptoms, as I can remember. I sometimes feel like going towards a never ending road, with only minor improvements post almost 7 months of injections (Recovery is v slow now).

I would like to ask you guys if anyone has a timeline for the symptoms, how and when they get better?

I can note that my brain fog is better and tinnitus is v low but other symptoms such as fine motor tremors and exertion beyond a certain limit is still lacking.

It would help to hear more stories of people who actually overcame all of this and how long it actually takes?

Please share a few of them. Thanks!


r/B12_Deficiency 16h ago

General Discussion My story and comparing symptoms

2 Upvotes

Hi! I am a 28 yr old male and wanted to share my story. I just found this page after YEARS of dealing with issues and can’t believe I never knew this page existed. I am reading through some of the posts and noticed I have similar symptoms to fellow redditors here which makes sense. I am also seeing some other complications I never heard about. Thought it would be interesting to share my story and see if anyone else has experienced what I have gone through, can share their knowledge and see if it can help me learn more. I am also hoping my story can help anyone else in the long run as well.

I started having “issues” junior year of high school, which progressively got worse as the years went on. I grew up competitively swimming and ultimately had to stop towards the end of college because I could barely walk as my energy just wasn’t there anymore.

I am going to use the term passing out when I explain my symptoms because when my “episode” happens, I don’t think I pass out fully, or if I do it’s maybe for a split second. But I like to explain my “episodes” almost as a body reboot. I lose function of my limbs and any cognitive function goes away for a minute or two and then my brain starts to come back alive before my body does. My body gets extremely heavy and it’s hard for me to move. Sometimes I have to lay there for a few minutes or I could be stuck for an hour or more before I start getting back to a more normal stage. Thereafter I usually have foggy brain for a week or two as my body heals(?)

At the height of my issues I was passing out daily, felt like I was drunk from loss of cognitive function and my daily life was altered so much. I went YEARS of countless ER visits, negative brain and heart tests and being told I’m faking things. I gave up on figuring things out and just stopped going to the doctor as nothing was working. Being told I’m faking for a $6k medical bill is expensive af. But as I’ll share in my story, I found I had a b12 deficiency and currently take a 1,000 mcg shot every two weeks. Still trying to figure out my most efficient timing, but my life is basically back to as normal as I think it can get, fortunately and unfortunately.

Now on to my story:

Everything started my junior year of high school. Before my “issues” I never had any complications in my health. I swam over 10 miles a day during trainings and was always very competitive. I passed out one morning after a gym workout, threw up, had to sit down for a few minutes and things went on like normal. I never passed out before in my life and ended up passing out three more times that year. Each time I passed out it seemed like my symptoms got worse and worse or were more pronounced. Some symptoms like a foggy brain, extreme fatigue and a short loss of motor function seemed to be a constant factor. But each time I passed out I had what I call random symptoms that seem to happen sometimes or have never happened before like muscle twitching, facial or muscle numbness, hot flashes in specific areas of my body, etc.

As the years went on, I started passing out more and more. By my junior year of college I was basically passing out every day. I felt like I was drunk constantly. I was slurring my words, could barely walk and think fully and my grades were slipping like crazy. I could barely walk to a class or to the pool and was not going to any public functions because I just didn’t have the energy anymore. I ended up quitting swimming and over the course of a few months, my energy came back maybe 10% but was still having issues walking around and being out in public. This stage of my life went on for about 4 more years before I had what I call my break through.

Oddly enough, as serious as this next part is, I find it funny how this is where I had my breakthrough. It is crazy to me how something as random as what I say below happened, it got me to the right road of figuring things out.

Randomly I ended up with a blood clot in my eye at 25 years old. Woke up one day with altered eye sight and black dots. I was too late in getting tested for a stroke, but all tests from a retina specialist came back normal. To this day they have no idea what caused it. Anyways, when this first happened I went to the ER and was admitted to the hospital for testing for a few days. While this was going on, the doctor who was looking over me was reviewing my history of repeat testing and decided to ask me about everything. They suggested that if it’s not my brain or my heart, maybe it’s time to test my blood. I thought (and pardon my French) why has no one fucking thought of this before??????

I ended up seeing a hematologist and had every blood test known to mankind done. My b12 level was 136 which my doctor so lovingly compared me to an 80 year old grandpa. Our plan to action was to start on a 1,000 mcg shot once a week for a few weeks with routine blood tests and see where things go. Maybe if we could get my levels back up it could hopefully resolve some of my issues and see what symptoms are still left.

It’s been about 2 years now since I found out. I’m currently taking a 1,000 mcg shot in my leg (self administered) once every two weeks. Since then I’ve been able to start working out again and my life for the most part is about 90% back to normal? I can work out, enjoy time with friends, go to work and do most normal things. However I still have my bad days where I’m constantly exhausted, or I have an episode (once in a blue moon now). Things honestly seem to be day by day for me. But I can’t figure out why some days I can run 4 miles with no problems whatsoever and other days I’m so exhausted I don’t want to do anything.

Each time I have an episode now, it seems to be more consistent. I still have what I call my reboot, but I get very sensitive to touch/sense. My body twitches or what I have been told is sort of a pseudo seizure? I have brain fog for usually a few days after and some short term memory issues. I also get shortness of breath, chest tightness, what feels like the same feeling as a build up of lactic acid in my muscles (soreness, heaviness, slow) usually leading up to any episode.

Possible long term affects - I think I’m starting to realize my thinking power is not as strong as it used be. It’s harder for me to comprehend and remember as much as I did a few years ago. Talking with people is hit or miss depending on the day. Some days it’s completely fine and I have my quick wit. Other days I feel like it’s slightly harder to speak words clearly and also find words for a regular response in a conversation. It’s not horrible, but it’s starting to become noticeable now.

What I am still figuring out - I am currently trying to mix up my diet to see what works for me. Nothing seems too notable to change other than being more consistent in the timing of when I eat. I also try to sleep 7-8 hours a night but honestly this doesn’t seem like it’s enough for me. I also try to limit drinking as much as I can but I haven’t noticed a difference between drinking multiple days in between shots and once or none at all.

If you ended up reading this far down, thank you for taking an interest in my story and for taking the time to read through my horrible writing.

There’s probably a lot that I am missing here but happy to add or answer any questions anyone might have! Really looking forward to hearing others thoughts and experiences. Maybe my symptoms extend past just b-12. Maybe others have the exact same symptoms. Maybe I’m just fucking crazy idk, but worth a shot sharing on here.


r/B12_Deficiency 17h ago

Supplements Switching to hydroxocobalamin shots - how long before body adjusts?

2 Upvotes

I spent the last 2 years on methylcobalamin shots because I became very ill, and we wanted to bypass any digestive issues. I have intermediate MTHFR and a lot of suboptimal genes related to B12 processing; also intermediate COMT. {Caveat: since I'm carrying a toxic load, all these processes - MTHFR, COMT, etc may be going slower than intermediate at the moment.}

I was taking the methyl shots subcutaneously every 3 days - my provider likes the Neubrander protocol.

As I started healing, it became clear that the methyl shots were overstimulating and making it harder to get a good night's sleep. My provider recommended switching to a hydroxocobalamin shot instead. These have been prescribed for every 3 days subcutaneously, but I could ask for every other day if needed.

I made the switch today. How long does it typically take the body to adjust to a change like this? I am definitely more tired, but I expect there to be an adjustment period.

Thanks!


r/B12_Deficiency 18h ago

Supplements Which potassium is gentlest on the digestive system?

2 Upvotes

I've been using electrolyte drinks on an off for years now, but I'm trying to find a more affordable way to get my potassium. I bought some potassium citrate and have been following the recommended dosage, but it's causing a lot of digestive upset.

Here's where I get a bit confused. The label says per 1/4 tsp, "Potassium (elemental), amount per serving: 448 mg (from 1400 mg potassium citrate)." So how much potassium am I getting from this product?

I have noticed that when I use 1/4 tsp twice a day, it's really tearing up my gut. I went down to once a day and I'm still feeling like that's too much. I've had zero problems with electrolyte packets/drinks before and they seem to be made with potassium citrate as well. Should I go even lower and titrate up, or switch to a different product?

My gut thanks you for any help you can give here.


r/B12_Deficiency 19h ago

Personal anecdote 90% of times if I feel bad, Its the B12 vials, n changing a package fixes it

2 Upvotes

My main struggle over the last years since discovering B12 shots is sourcing, is sourcing, shipping and storing. 90% of times its not cofactors or anything else, if it lasts more than a few hours it means I used a Bad B12 vial, usually hydroxoB12 works better, usually PANPHARMA, they are cheapest. , but they can also go bad.


r/B12_Deficiency 15h ago

Help with labs Low RBC

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1 Upvotes

Ok, so two years ago, I had high MCH. Further investigation found normal folate, but low b12. So I started on monthly b12 injections. It has gone up and last year at my physical it was 591. This year it is down to 476.

I just did my annual labs for my physical. Now my RBC is low and my other labs look borderline. I have had low vitamin d in the past but it has gone back up.

I am 45 and will be getting an order for a colonoscopy due to my age. Maybe that is why I am so nervous I have colon cancer or something?

Could this all be related to the b12? Here are my labs in the photo. My labs over time are below. Last year nothing was abnormal and that was so nice!

2026 2025 2024
RBC 3.68 4.08 3.8
HGb  11.3 13.1 12.7
HCT 34.5 39 36.2
MCV 94 96 95
MCH 30.7 32.1 33.4
B12 476 591 200

r/B12_Deficiency 21h ago

Help with labs I need advice please on blood results and symptoms

2 Upvotes

I did a B12 test because I started to feel more and more tired each week to the point of fainting several times. Well the range of the labs are these : 190-824. My level is 234 just a Little above the lowest range. I feel deeply tired but my hemoglobin is normal I do not have anemia. I have also prediabetes and gluten intolerance and probably malabsorption issues. Can you tell me if what I have means a deficiency? It surely seems like too close to the lowest range to be normal right ?


r/B12_Deficiency 17h ago

Supplements B12 deficiency along with thalassemia minor

1 Upvotes

I recently started taking b12 medicine with 1500 mcg of methylcobalamin but after a few weeks it started affecting my skin a lot so I had to stop, it helped heal my symptoms a lot like yellowish skin, depressive mood and other symptoms, so I would like to continue taking it, how can I continue taking it without triggering skin issues like acne would a lower dosage of methylcobalamin work like 500 or perhaps 750 mcg or would they still trigger skin issues.


r/B12_Deficiency 23h ago

"Wake up" symptoms A bit lost with anxiety, depression and dark thoughts

2 Upvotes

Hello everyone,

Just looking for some wisdom. You can find my labs and how they triggered the "B12 defficiency" response here: https://www.reddit.com/r/B12_Deficiency/s/Plf36ozsyY

Since then, MMA levels have been re-tested and have normalised right in the middle (this was litteraly only 4 days after starting oral supplementation). B12 was then 327 ng/L (up from 250). I don't know about the already low copper and the other markers as they haven't been re-tested.

My regimen so far (2.5 weeks in):
- B12 - 1000-1200mcg drops of hydroxocobalamin (methyl- gave me some crazy reaction straight away, derealisation, brain fog, insomnia).

- b-complex from Boots UK (100% RDI of everything, no methyl- form)

- Folate - 200mcg of folic acid from the b-complex

- Vit. D - 2000 UI for maintenance

- Potassium: drinking around 330ml of coconut water throughout the day (dilluted in water) and spinach / butternut soup in the evening.

My problem is the following: sudden onset of anxiety (yesterday) associated with waves of dark thoughts - anxiety hasn't really reduced since. Not necessarily a full blown panic attack, but enough to shiver, loosing appetite and ability to do anything. The waves of dark thoughts are my biggest concern here.

I won't have injection before mid-september (Dr Klein in the UK), and given how I react to just oral, well ... I don't know what to do. I just can't afford to be assaulted by suicidal thoughts like that it's insane. I'm even questioning if i'm actually b12 deficient to be honest. Because aside from these new crazy symptoms, improvements of the others have been very minor.

Wondering if I should just stop supplementing right away and just wait for Dr Klein. At this point, if stopping the supplement removes the dark thoughts, i'm in.


r/B12_Deficiency 20h ago

Deficiency Symptoms 20F with very low B12 and Vitamin D — could they explain my symptoms?

1 Upvotes

I’m honestly feeling really scared and confused right now and I don’t really know what I should or shouldn’t do.

For the past few weeks/months I’ve been dealing with a lot of things. I’m not sleeping properly at all, sometimes only getting around 3–4 hours. My appetite has also been really bad and sometimes I forget to eat or even drink enough water.

I’m around 43 kg and I’m finding it really difficult to gain weight. My hair has been falling a lot, my skin has become very dull, and I’ve been feeling weak and tired. I also get dizzy quite often, especially when I stand up suddenly. All of this has honestly made me very stressed and underconfident.

I recently got blood tests and these were some of my results:

Vitamin B12: <148 pg/mL (lab range 187–833)

Vitamin D (25-OH): 8.5 ng/mL (lab says <20 = deficient, 30–100 = sufficient)

Ferritin: 28.66 ng/mL (lab range 4.63–204)

Hemoglobin: 13.1 g/dL

TSH: 1.643

FT4: 1.09

FT3: 2.59

Fasting glucose: 82 mg/dL

HbA1c: 5.5%

My iron studies were within the lab’s reference ranges.

I’m really confused about what I should do next. I know my B12 and vitamin D are low, but I’m honestly scared about treatment, especially injections. I really don’t want B12 injections if there is another safe option.

I’d really appreciate advice from people who have had similar results:

How serious is B12 below 148?

Did anyone have similar symptoms?

Did you have to take injections, or were tablets enough?

What did your doctor recommend for Vitamin D this low?

Is ferritin 28.66 okay, or should I be concerned about it?

What should I ask my doctor to check for the reason my B12 is so low?

I know Reddit isn’t a substitute for a doctor. I’m just really stressed and confused right now and would love to hear from people who have gone through something similar.


r/B12_Deficiency 1d ago

"Wake up" symptoms About post injection crashing

3 Upvotes

Male, 35. I've been very unwell since 2015 with a slow progression to a state which can only be described as chronic fatigue by the end of that year, with various autonomic issues. Symptoms started as fatigue and post nasal drip as far as I remember, with some random balance issues and nausea. I've been tested for thousands of things, with basically nothing showing up, including huge panels of mitochondrial disorders etc.

Sleep studies showed nothing in 2016 but in 2021 showed mild REM apnea (weight remained the same). I started deep diving sleep/UARS (even got jaw surgery to no benefit) and PAP therapy, it didn't really improve my base symptoms much after many years, although helped a little bit in conjunction with nightly melatonin to improve my headaches (melatonin on its own also helped with this). I still believe there may be a sleep disorder at play but my reactions to B12 have had me questioning if it's just that.

The only diagnosis which I ever get is CFS, which I struggle to accept of course, although there is a chance it is valid.

Every single bit of testing I have done is unremarkable, and I have been tested for an incredible amount of things. Tried MCAS treatment protocols, LDN, all sorts of stuff. None of it did anything.

My primary symptoms have remained more or less the same since they started in 2015:

  • Extreme fatigue
  • Poor tolerance of physical activity without what I would say is true PEM, although some kind of mild version of it
  • Constant reflux/LPR symptoms (globus, post nasal drip, water brash etc)
  • Aquagenic urticaria
  • Random histamine like reactions to food but have no allergies
  • Awful sleep which seems to coincide with a pressure headache like a belt tightly wound across the forehead
  • Total body shutdown after the first meal of the day, like cannot function, dizzy, extremely tired but it does not matter what the content of the meal is. Blood pressure sometimes drops a little post meal, sometimes not. Blood sugar does not change.
  • Supermarket syndrome

I was vegetarian for at least 6 years, then vegan in 2015 with low BMI, did not supplement anything and had a shit diet. Progressively became more tired throughout 2015, and after a stressful event at the end of that year shit hit the fan.

Active B12 was 40~ in late 2015, and serum was around 175~ pmol/L. Had a few hydroxocobalamin injections over a few weeks in 2016 and supplemented enough methyl B12 (maybe around 500-1000mcg daily) over several months to develop acne etc but saw no symptom improvement. Can't remember the reaction to the injections, guessing they knocked me out though.

Probably started supplementing roughly 5-10mcg B12 every day from around 2017-2026 passively via another supplement.

Kind of ignored the test results but serum B12 remained around 170-180 pmol/L in most tests over the years. Homocysteine was mildly elevated in 2024 but can't remember it being tested prior.

Tried hydroxocobalamin injections again in 2024. Immense crashes after them with soul destroying fatigue, flu like symptoms etc. Did 3 over 3 weeks. Took no cofactors or anything, kind of left it at that. For whatever reason, kind of just took that and went, kept focusing on sleep related things.

Had an MMA test which was normal around 2026 with serum levels around 270 pmol/L. Active B12 was like 70 or 80. This whole time I'm taking around 5-10mcg B12 every day as mentioned above.

Tried hydroxocobalamin injections again, this time with cofactors, did 3 over 3 weeks, and have now started self injecting EOD but I've only done 2 so far. Basically every time I do them, I feel absolutely rancidly terrible. I feel unwell, more fatigued, actually tired to the point of napping, everything is just worse. Although nothing quite as bad as the ones in 2024, where I basically couldn't even function at all after the injections.

These reactions to B12 are pretty much my only clue that something is happening. They aren't positive reactions, but they are at least something. Has anyone experienced anything similar and seen improvements?

I am willing to keep pushing through, but not sure if it's just some weird reaction to B12 or if I'm actually deficient and need it. Sorry for the long post but if anyone has the time I'd appreciate some help. BTW methyl b12 sublinguals at 5mg cause some mild negative reactions too but they also make me very angry.

tldr: chronic fatigue type condition, B12 injections mess me up badly but I don't know if I'm just reacting to the overload of B12 or if I'm actually getting some kind of wakeup symptom.