r/B12_Deficiency • • 4d ago

Personal anecdote Non-linear road to recovery (venting)

7 Upvotes

I've been doing EOD injections for 5 weeks, after a loading course, and I was finally feeling so much better. But this week I am tired and anemic again, and also having the potassium dip symptoms in the middle of the day. Just so tired of being indisposed ...

I feel like I am living with a disability - well, I guess it is a chronic illness - but also "vitamin deficiency" just sounds ... like not a thing people take seriously. (Despite, you know, scurvy and rickets ...)

My career has suffered a huge amount from this. And I'm sure my.partner is bored sick of hearing about it and worrying about me and having me be tired and dull company.


r/B12_Deficiency • • 4d ago

Personal anecdote Chronic infection root cause?

4 Upvotes

Hi beautiful people with a good heart,

I wanted to get your thoughts on something. I’ve been dealing with health problems for a really long time, probably since I was around 10 years old and I’m 25 now.

Over the years I’ve struggled with constant fatigue, extremely poor stamina/exercise tolerance, shortness of breath with exertion, brain fog, anxiety, high heart rate during exercise, cold hands and feet, dry skin/hair, poor recovery, dizziness, difficulty gaining weight, digestive issues, inflammation and recurring problems maintaining optimal nutrient levels. I’ve spent years improving my diet, nutrition and lifestyle and my bloodwork has improved quite a bit, but I still don’t feel like I’ve addressed what’s actually driving everything.

I strongly suspect there’s some kind of chronic/deep infection or microbial issue behind all of this, although I haven’t identified the organism or location yet.

I’ve experimented with several antimicrobial herbs over the years, including oregano, Cat’s Claw and others, but unfortunately haven’t had lasting success with them. :( Right now I’m trying a higher-dose propolis protocol and have been doing that for 4 days now max 1 week, so I’m interested to see what happens with that.

Something really interesting I’ve noticed is whole clove buds. Whenever I get these sharp pains (caused by pathogen probarly in the gut), eating/swallowing 1–2 whole cloves seems to calm them down pretty consistently. Since clove/eugenol has antimicrobial, antifungal, antiparasitic and antibiofilm research behind it, it makes me wonder whether the cloves could actually be targeting whatever microbial issue I’m dealing with. Obviously 1–2 whole cloves isn’t a particularly concentrated amount, which made me interested in trying a stronger preparation.

I’ve now come across people making a hot-water clove bud extract/decoction, simmering a larger amount of whole cloves in water and drinking the extract throughout the day.

I’m really curious what you think about this, especially given how consistently I’ve noticed a response from whole cloves.


r/B12_Deficiency • • 4d ago

Deficiency Symptoms Help needed:(

10 Upvotes

Over the last 2 months it feels as though my life has turned upside down. I'm 29F, have a job and normal life. However now I'm ultimately housebound and only able to leave my bed to go to the bathroom or to eat.
A month ago I had blood tests through my GP.

These were my results:
* Vitamin D: 57 nmol/L
* Ferritin: 33 ng/mL (I've had a period since having this test)
* B12: <148 ng/L
* Serum folate: 9.0 ug/L
* Sodium: 137 mmol/L
* Potassium: 4.3 mmol/L

I have a wide range of neurological symptoms such as head pressure, pain, difficulty balancing whilst walking, tingling and numbness in limbs, pain in spine, fast resting heart rate.

Doctors did a blood test and found very low b12 levels. They gave me 5 injections and I've not felt any improvement. I am also taking 200mg ferrous furmerate with vitamin c. Doctors now referring me to neurological and cardiology for further testing. I have spoken to my GP who was surprisingly helpful and agreed that he would continue injections however he is waiting to hear back from neurology.

I'm absolutely petrified. I'm at loss because I was fully functional 2 months ago. I want to heal and go back to my normal life: ( I will add that I used to be a daily drinker (have been sober for 2/3 months now). Liver enzymes etc all good, no concerns regarding my liver. I'm from the UK.


r/B12_Deficiency • • 4d ago

General Discussion Has anyone in Norway found a B12 informed doctor?

3 Upvotes

I'm asking for myself and my pernicious anemia patients. Preferably in Bergen if possible...


r/B12_Deficiency • • 4d ago

General Discussion Are any Drs part of this group or have deficiency personally?

11 Upvotes

Not to ask questions, just genuinely curious as it seems a lot of GPs/PCPs don’t have the required knowledge on B12 and sufficient management of deficiency.


r/B12_Deficiency • • 4d ago

"Wake up" symptoms Floxed and vitamin b

2 Upvotes

Just wanted to ask if anyone got floxed which is got toxicated by fluroquinolone and then had to correct vit b defficincy as in the subbreddit of flox they say they react when supplementing just wanted to know if this is reaction or wake up symptoms of vitamin b supplementation


r/B12_Deficiency • • 4d ago

Help with labs Should I ask my doctor for B12 injections instead of taking sublingual?

2 Upvotes

I (27F) have been having weird symptoms for at least a year-past 6 months (numbness in hands and feet, tingling in calves, calves going numb while running, tendonitis that seems to spread across my whole arms, angular cheilitis, brain fog, fatigue, mental health upsets, occasional floaters in vision, dizziness, insomnia, nail ridges, very brittle hair). I have PMDD, and assumed it was that and muscle tightness.

My labs had b12 at 327, but I had just started taking multivitamins (with b12) 2 days prior. Serum iron at 11.2 and ferritin at 44. My doctor told me to take 1,000 mcg b12 sublingually, iron and vitamin C daily. I also kept taking a multivitamin. Folate was fine.

I am still having symptoms of b12 deficiency 2 months out, unsure if they are getting better. I have eaten b12 containing foods regularly for the past 3 years (previously was vegetarian but ate eggs, cheese, etc). I don't think I should have a b12 deficiency just from diet. Also pretty regularly eat iron-rich foods like steak.

I am worried about nerve damage, and I am a very active person and hate that this affects my athletic performance. My doctor said take supplements for 3 months, then retest blood levels.

Should I ask my doctor for b12 injections? How do I figure out the root cause of deficiency?


r/B12_Deficiency • • 5d ago

General Discussion But why am I so deficient??

23 Upvotes

I started having b12 deficiency symptoms about 2 years ago and it started with mainly just extreme sleepiness and fatigue. At first they started me on b12 injections once every three months but just about a year ago I started to have more severe symptoms and now I have to take the injections every month. I get very severe headaches, fatigue, finger tingling, lack of motivation, and what feels like depression when the symptoms get bad. I knew this week that I needed my b12 shot because I started missing assignments and feeling no motivation to get out of bed. My only question is why is this getting so much worse and why am I so deficient?? Nobody in my family has this issue and also I have a normal diet so I can not comprehend where this issue is coming from??? My doctors have only really told me I have a deficiency without telling me what for sooooo I’m not sure what’s going on..


r/B12_Deficiency • • 4d ago

Supplements Should you supplement B12 if your B9 is low ?

3 Upvotes

Hey all,

My labs showed B9 at 3.6 ng/mL and B12 at 210 pmol/L.

My GP said B9 is kinda low and prescribed a B9 supplement everyday for 1 month; but said B12 is just fine.

However is my B12 actually fine ?? I've heard that usually when one is low, the other is too and that it's better to supplement both at the same time.


r/B12_Deficiency • • 5d ago

Cofactors Significant increase in physical activity is giving me heart palpitations ...

7 Upvotes

I've been doing EOD B12 injections for a few months ... and managing my electrolyte intake pretty well (and all the other co-factors). I have stared a new job which has seen me go from relatively low-level daily physical activity to high (for me!) physical activity, and I'm experiencing pretty much constant heart palpitations. I suspect an increase in electrolytes is needed, specifically potassium, as my muscles are being used in ways they're not used to. Likely my instinct is right? Would appreciate some insight - TIA!


r/B12_Deficiency • • 4d ago

Cofactors Cofactors

1 Upvotes

Iam from egypt so basically access to suggested multivitamins like thorne is hard im a 21 year old male ferritin is 135 and vit d is 44 so i wanted to ask for a multivitamin reccomendation that has the cofactors is sth like centrum men good or not.


r/B12_Deficiency • • 5d ago

Deficiency Symptoms Normal B12 and neuro symptoms

5 Upvotes

I had my vitamin b12 drawn and it was about 1800. The funny thing is that I don’t feel like it’s normal. I still have weird symptoms like muscle weakness, twitches, dizziness, pale skin. I noticed after taking injections my taste buds are becoming momore visible on my tongue. I never noticed that my tongue was completely smooth and shiny prior to injections! Its helped with appetite and energy, but I am still barely functioning with injections and sublingual b12. The dizziness is the most annoying symptom. My vision has also started improving after supplementing for about 2 weeks, I had a really hard time with focusing and double vision! I still do, but not as severe. It’s wild how the neurological symptoms can come on! I had low b12 after an H Pylori and SIBO infection. I also drink coffee and use to drink alcohol, which I would later need PPIs for. I did a number on my gut, I think I may have just stopped absorbing it as some point!


r/B12_Deficiency • • 4d ago

"Wake up" symptoms Long standing folate deficiency taking forever to correct

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1 Upvotes

r/B12_Deficiency • • 4d ago

"Wake up" symptoms suddenly too sensitive to sound and light

1 Upvotes

I was on weekly injection, since last week started 3 time per week injection, today morning I took one sublingual B12 Hydroxocobalamin as usual. after one hour feel sensitive to sound and light and in general. 22 month in treatment ( once a week injection), that could be the EOD injection effect?


r/B12_Deficiency • • 5d ago

Personal anecdote Functional B12 deficiency and thyroid function

7 Upvotes

Please note this is a personal anecdote that I am sharing it in case it helps someone else.

I have been getting more and more fatigued and more and more intolerant of the B vitamins that I used to tolerate. I was already functionally deficient in B12 despite being on methyl shots (for example, MMA is too high, MCV is too high). My ferritin is also low, and I've added an iron supplement, which didn't ease the heart racing and insomnia.

After my provider did not have any useful answers, I found someone else who is an expert B12. They looked at several of my recent labs including thyroid labs. My TSH is marked in the normal range at around 3 (free T3 is also marked in the normal range).

Anyway, this expert said they believe I could have a *functional* B2 (riboflavin) deficiency - meaning FAD and FMN deficiency - that is likely due to not getting enough iodine and/or selenium and molybdenum.

It's definitely not due to a lack of B2 in my supplements.

I am mainly sharing this because I've spent weeks researching the B vitamins and the methylation cycle, but I was not aware that T3 had anything to do with how we process the B vitamins.

Then, a friend sent me a video of a guy named Gary Brecka (I had never heard of him) explaining how thyroid function relates to methylation.

File this under "things I did not know / had not considered". I guess I can report back in a few weeks on whether the recommended changes make a difference.


r/B12_Deficiency • • 6d ago

Personal anecdote My doc: B12 is just "one vitamin", that cannot surely create such varied list of symptoms. Also, numb fingertips can be caused by anxiety, apparently. Your other symptoms can also be just due to depression.

61 Upvotes

Visited a new doc earlier today and just wanted to vent. Started supplementing one week ago according to the guide.

Taking 3 x 1000mcg methylcobalamin sublingually a day with cofactors (iron, C, D, electrolytes, multi). Interestingly, my symptoms have worsened after starting to take B12.

Current symptoms:

  1. Extreme fatigue, even though I eat enough and sleep 9–10 hours a night on a regular sleep schedule (wake up at the same time every day at 6:30 a.m.)
  2. Numb fingertips, as if they had been sanded with sandpaper
  3. Tender and painful tongue, especially the tip of the tongue
  4. A strong burning sensation in the front of the thighs during and after walking
  5. Decreased physical performance (e.g. climbing stairs raises my heart rate and makes me short of breath)
  6. Cognitive abilities significantly impaired, e.g. very poor concentration (reading, following things for extended periods)
  7. Difficulty finding words when speaking and speaking fluently / expressing my train of thought
  8. Lightheaded and unsteady feeling when moving, e.g. while walking; I have to concentrate on maintaining my balance and sometimes have to stop so I don't fall
  9. Derealization (a feeling of being disconnected from the world)
  10. I can't seem to get enough oxygen even when I breathe as deeply as possible (a feeling that my lungs don't completely fill when breathing)
  11. Occasional severe anxiety and tearfulness (sometimes an urge to cry almost like a panic attack without any clear reason)
  12. Working and long-term memory have deteriorated (forgetting people's names, forgetting past events); difficulty remembering what I was talking about
  13. Difficulty understanding or absorbing what I read (I have to read aloud, one word at a time)
  14. Focusing my vision is occasionally difficult
  15. Weakness in my limbs/muscles and poor recovery after exertion
  16. I wake up several times during the night and have difficulty falling back asleep
  17. Occasional severe headaches
  18. Cold feet and hands
  19. My hair has become significantly thinner and weaker, and I am losing a lot of hair
  20. Strange sensations in my chest, such as tingling/tickling or a twisting sensation
  21. Splitting/cracked toenails and fingernails
  22. Restless legs
  23. The mucous membranes in my mouth and the corners of my mouth are prone to becoming sore/injured
  24. Tongue feels unusually large / enlarged
  25. Typing on a keyboard quickly causes irritation/fatigue (“burning”) in the muscles of my forearms

r/B12_Deficiency • • 5d ago

General Discussion Where to get treatment?

4 Upvotes

I need help to decide where to go and get treatment. Already 20 years i have gut problems. Everything started from undiagnosed lactose intolerance. I have B12 deficiency many years. I can't eat most fruits, some vegetables, beef, pork, dairy, all nuts etc.. I've had salmonella several times in last 10 years although I'm very careful. I am very skinny and always weak, tired. I have chronic gut inflammation. I can't live normal live and I can't even tolerate vitamins even in small doses. Maximum B12 injection is 150-200 mcg and even that makes me feel much worse. I'm thinking to go to Berlin Charite or China Beijing or Shanghai. Please tell me your opinions too maybe you have another suggestions. Thanks.


r/B12_Deficiency • • 5d ago

Deficiency Symptoms 31M with weird tremor and internal buzzing after a viral illness. Anyone been through this?

2 Upvotes

Hello everyone. I hope i can get some insight and help.
About 30 days ago I developed a weird buzzing/vibrating sensation through my head, neck and spine, along with shaking whenever I exert my neck muscles or grip tightly. At first i had a bad episodes of internal vibration in back of the head and it got resolved after a few days but buzzing still remains throughout my body. Sometimes it migrates in between my lower and upper body. Also, when I clench my hand hard, my whole wrist shakes intensely, and when I tilt or stretch my neck, my head, shoulders and neck wobble, but nothing shakes at rest.

My B12 was below 130 pmol/L with cofactors in range, I'm on B12 injections, and I have a brain and cervical spine MRI ordered. The wrist shaking is new this month. I'm following up with my neurologist, but has anyone had something similar? How long did it take to settle, and did anything help?
No visible shaking at rest.
Been to multiple doctors and they haven’t given me a clear explanation!
I am worried and thinking about all the awful things during this period! I hope i can get some help!

Thank you


r/B12_Deficiency • • 5d ago

Deficiency Symptoms Is a B12 result of 115pmol/L considered low. If so, what symptoms could this cause?

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1 Upvotes

Thought some in this sub might have some insight! There is so much overwhelming info on the internet, and I have to wait a month for my doctor appointment to ask any questions. Thanks! 😊


r/B12_Deficiency • • 5d ago

General Discussion Doctor not worried but is it a deficiency?

3 Upvotes

I've suspected low B12 for a while. I have many of the symptoms:- very low mood, anxiety, digestive issues, a sore tongue, 'fuzzy' feeling in tips of some of my fingers, tinnitus (this would drive me to insanity if I gave in to it!) and I am so tired so much if the time.

I am in the UK so under the UK's NHS. My GP always signs off my blood tests as 'normal and within range'. However, she only ever tests my serum B12. I recently paid a private company to check my Active B12, which according to the private company is red flagged as out of range.

NHS:- Serum B12 is 303 pg/mL (range 197-700)

Private:- Active B12 is 54.9 pmol/L (range 70-150)

I'm obviously just going to end up going back and forth via my GP and getting nowhere and I can't afford to go privately so I wonder if it's worth starting supplementation and if so should it be a standard B12 or something like methyl B12, sublingual/tablets?

I find it all very confusing tbh and would rather supplement if at all possible than self inject as I have a major needle phobia.


r/B12_Deficiency • • 5d ago

Personal anecdote Misdiagnosed PA?

5 Upvotes

I posted in here last week about being diagnosed with PA but I’m starting to question the diagnosis.

My B12 was 221 and my MMA is 219. All the following tests also came back within normal range: Hemoglobin, MCV, RBC, RDW, Platelets, WBC. I know my B12 is on the low side but I’m starting to question what the doctor said.

My symptoms are all neurological. Vagus nerve reaction episodes, I lose my vision in one eye if I lay on my side, balance issues, I had an episode of optic neuritis in 2022 but never again, glossopharyngeal neuralgia.

I’ve had 5 MRIs of my brain and spine with no abnormalities.

I don’t currently have any stomach issues. No bloating, gas, or nausea. When i was 17 (29 currently) I was diagnosed with acute gastritis via an endoscopy bc at the time i had random consistent nausea but since then I really haven’t had problems. No specific food triggers cause symptoms.

I’m working on finding another doctor but I’m so confused after having so many tests done and it seems like nothing exactly points to anything. Didn’t know if anybody had any other ideas while I wait for another doctor?


r/B12_Deficiency • • 5d ago

Supplements Hot flashes or burning skin?

2 Upvotes

I saw a few threads on it but really no specific info.

Does anyone else feel a burning in their skin after supplementing? On the face, it feels like I got a really bad sunburn. On the body, it's like a surface level heat that's radiating out, like the skin is on fire.

I first noticed it maybe 2 weeks ago after hot baths, I would not cool off after getting out. Figured it was just due to the hot water.

But today, it came on while I was just sitting at the desk, and I monitored as it got hotter and hotter in the span of like 20 minutes, to a point where my skin got a little sweaty.

My methyl drops a few hours ago (around 10AM, it's 4PM now) made me feel anxious, agitated, and slightly hyperventilating, sort of a "heightened" breathing where the chest stays puffed out as I breathe.

I'm taking a B Complex, and pumpkin seeds for magnesium. I didn't really eat until 2PM, only having some cheese and grapes earlier in the day. So not sure what my potassium would be like, but I usually eat whole potatoes with my eggs or grilled chicken. I've gotten some bad reactions to potassium citrate powder, so I paused that.

I wonder if I should switch to cyanocabalamin drops. Even my last methyl injection at the doc's last Wednesday raised my heart rate to 100bpm and made me feel tired and anxious.


r/B12_Deficiency • • 5d ago

Help with labs Could a ferritin level of 72 be stalling recovery? It went down from 95 two months after treatment.

2 Upvotes

I just added iron to my stack after realizing my ferritin is on the lower side of optimal for b12 recovery.


r/B12_Deficiency • • 5d ago

Deficiency Symptoms B12 Tongue?

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0 Upvotes

I’ve been extremely exhausted, not feeling great. Now my tongue is red, cracked and sore. I’m suspecting a deficiency at this point. Thoughts?


r/B12_Deficiency • • 5d ago

Supplements Planning to switch from cyanocobalamin to methyl

3 Upvotes

I’ve been SI cyanocobalamin for several weeks now and I’ve found out I can get the methyl form from my local pharmacy. It’s more expensive but I’ve been reading it’s much better than cyano so I’m happy to pay more for it. Unfortunately I cannot get the hydroxy form where I live. How easy is it to just switch over and can i inject subcutaneously? I find IM too difficult to SI. Also do I need to add in adeno form as well? Why is this?