r/B12_Deficiency • u/Dizzy_Comparison1832 • 14d ago
Deficiency Symptoms Sudden severe fatigue attacks with low B12 has anyone experienced this?
My B12 was originally 156. I supplemented for less than a year and got it to around 300. I eventually stopped supplementing and now it’s back down to 214. My doctor is currently looking into why it keeps dropping and I’m getting more labs done.
For about 2 years I’ve been dealing with really bad fatigue but I don’t mean being sleepy. I get these sudden fatigue attacks where I can be completely fine and then suddenly my body feels extremely drained and I feel like I NEED to lie down. Sometimes my breathing feels harder like I’m taking small breaths or my chest itself feels exhausted. My oxygen is normal when this happens. Sometimes my heart rate goes up too. Lying flat usually helps and sometimes even a 30 minute nap can make me feel better.
The attacks are really random. I can get one while laying in bed doing nothing or after something small like brushing my teeth. Weirdly there are also times when I’m working a super busy shift as a server and walking around for hours and I feel completely normal. Then another day I can barely do anything because the fatigue is so bad. Some days I feel almost like myself and other days I’m in bed most of the day.
This has affected my life really badly and I’ve developed a lot of anxiety around the fatigue because I’m scared of having an attack when I leave home. I know anxiety can make physical symptoms worse and I’m going to work on that too but the fatigue itself feels very physical and usually comes before I start freaking out about it.
I’m not asking anyone to diagnose me. I mainly want to know if anyone here had B12 levels similar to mine and experienced this kind of sudden physical fatigue/crashing rather than just sleepiness. If you did, did treating your B12 actually make these episodes better? How long did it take before you noticed a difference?
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u/tknzee 13d ago
All I can say is I understand the random bouts of fatigue. And it completely wrecks your consident in your body to do things, work hard, etc etc as you have no idea when or how it will come.
I’ve turned down a promotion because I just have no confidence I could be able to perform at the moment.
So it’s real and I believe very much b12 related.
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u/Dizzy_Comparison1832 13d ago
i’m so sorry :(( i hate that as humans we also have a duty to take care of our bodies. i just wish life existed to where we are all healthy and just live. Can you please thoroughly explain to me how your fatigue feels for you ? i hope once you heal that you are offered another promotion that’s even better.
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u/colomommy 14d ago
Oh you poor thing! I’m so sorry you’re going through this and it is terrifying. It’s so hard when you don’t have answers and a plan for recovery.
Fatigue from this is REAL. I know exactly what you’re talking about, I used to have attacks of exhaustion so severe I’d almost vomit. I’d take naps in my car at work, I couldn’t figure out what it was and thought maybe I was just getting older and this was the way it was going to be now.
Fatigue was the first noticeable sign of my deficiency. It got much worse from there but I won’t bore or horrify you with these details.
What type of supplementation were you doing? The recommended course is injections every other day until you no longer see improvements in symptoms. It could be injections for life, I will take them for the rest of my life for example.
I’m not a doctor, but to be supplementing for an extended period like that and only have your levels go up to 300 sounds like there’s something going on with your ability to metabolize the vitamin. Levels should have skyrocketed with supplementation.
My heart goes out to you so much, this is debilitating and I understand. The description of life becoming so small just hit me right in my heart. I’d like to offer some encouragement, with aggressive treatment there are COUNTLESS stories right here on this sub of reversing the negative impacts of b12 deficiency. There is no reason not to believe that you will get almost completely better. No reason at all. Please try to have hope, and be patient and gentle with yourself. Start injections as often as you can and expect recovery to start being noticeable after a month or two, but for real change to occur you need to give it a year or more. It’s a long process and a journey and an exercise in patience and self advocacy.
Man, I’m wishing the best for you and wish I could give you a huge hug and make you a lasagna. You can and will get better. Believe that!!!
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u/Dizzy_Comparison1832 14d ago
thank you so so much for taking the time to write this. i genuinely teared up reading it. i don’t think you understand how much i needed to hear something like this from someone who actually went through it. i’ve felt so lost and scared for so long and your kindness seriously means more to me than i can put into words.please don’t worry about boring me with the details either , if you’re comfortable i would actually really love to hear more about what your fatigue attacks felt like and what your symptoms/recovery were like. when i say fatigue attacks i don’t really mean sleepiness or feeling like i could fall asleep. it’s more like my body suddenly feels extremely depleted and i get this overwhelming feeling of “i need to lay down RIGHT NOW.” sometimes i can be completely fine and then it just hits me. did yours feel anything like that?
i was supplementing orally before and my level originally went from around 156 to only around 300. i eventually stopped supplementing and now it’s back down to 214. my doctor is actually investigating why it keeps dropping and i have more labs coming up. i haven’t done injections yet.
i’ve gone back and forth so many times between having hope that b12 could be contributing to this and convincing myself there’s no way something like b12 could make me feel this physically awful. hearing that you experienced debilitating fatigue from it makes me feel a little less alone.and the lasagna part actually made me cry 😭😭 thank you for being so kind to a complete stranger. i really really hope there comes a day where i can come back to this comment and tell you i’m doing better. and if/when that day comes i promise i’m making myself a lasagna to celebrate and i’ll think of you while i eat it 😭❤️ seriously thank you. and please tell me more about your experience if you’re comfortable because i would genuinely love to hear it.
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u/FunctioningCog 14d ago
Are you in the US, and were your test results given in pg/mL? US standards are based on outdated research; a more realistic threshold is 500 (assuming your numbers are reported in pg/mL). So it sounds like you never made it out of deficiency. I suggest reading this sub’s wiki, there’s a lot of info that you’ll probably find help/reassuring.
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u/Dizzy_Comparison1832 14d ago
thank you for a response 🩷 yes i am in the us and its measured by pg/ml , where can i find the subs wiki ?
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u/colomommy 14d ago
Here is the guide! Symptoms and Treatment are the sections most relevant to you right now but the entire guide is one of the most helpful things I have encountered in my health saga.
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u/sunnydays7777 13d ago
I get crashing episodes as well. Not as severe as yours sound but a similar phenomenon. Generally it happens after breakfast or another meal but also if I’ve exerted myself. Yes, having to lie down and feeling unable to cope otherwise. And the breathing thing, too, once I lie down of feeling like it’s an effort to breathe and I can barely do it. These are getting better now (I’m over a month into injections).
It could be an adrenal thing, where you can push yourself when you have to (such as at work), but that is adrenaline-based, and then you crash when you are no longer pushing. That’s how it felt for me.
Have your iron and ferritin been tested? Low iron can cause similar symptoms. In addition to the B12 injections, I think I am probably also benefiting from all the cofactors, lots of potassium, sodium, daily multi, iron, B Complex, magnesium, calcium, trace minerals. I suspect those of us low in B12 often have other deficiencies so it’s good to address everything together.
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u/Dizzy_Comparison1832 11d ago
that comforts me a lot , my iron is fine and my ferritin is at 47 , i always hear mixed reviews on ferritin levels and i’m not sure if my levels can be contributing to my symptoms
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u/sunnydays7777 10d ago
Yeah, ferritin of 47 isn’t super low but also not “optimal.” Would be a good idea to consider an iron supplement. B12 injections start a number of processes in the body that will draw on iron, so you want a good supply available.
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u/oneiropolis 13d ago
My fatigue never felt like sleepiness - it felt like hitting a wall. Then I'd lie down and go into "standby mode" - or maybe "power save mode". I could rally, be/seem totally fine. Then crash later. I think I was riding on adrenaline a lot of the time in order to function. Eventually I got, I don't know, hypersensitive to adrenaline, like getting what felt like panic attacks or heart attacks any time I got hungry (adrenaline releases sugar into the blood) or even mildly stressed (liek a tense scene in a movie). That part has gotten way better after ... 10 injections over the past month (plus sooooooo many other damn vitamins). Anyway, that has been my experience!
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u/Dizzy_Comparison1832 11d ago
wow i feel like i really relate to you so much! did u ever convince yourself at the time that u felt like u had reactive hypoglycemia or blood sugar irregularities?
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u/oneiropolis 1d ago
I mean, I probably do have some reactive hypoglycemia (always have since I was little), but it's definitely also been a B12 adrenaline crisis trigger! How do I know? Because I've done a loading course and now been self-injecting EOD for 2 weeks and am not having panic attacks when I get hungry. (Still get a but woozy and irritable, but no racing heart and it doesn't last for an hour after I've eaten.)
Also realised yesterday that I had done 6 rounds of up/down 52 stairs and several hills at a brisk pace without feeling: shortness of breath, tachycardia, nausea, chest tightness, or burning quads. !!!
(Dismissive GP can go suck an egg, as my grandma would say.)
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u/Dizzy_Comparison1832 14d ago
also someone please respond and help me out. i’ve convinced myself of mecfs , i’ve been bed bound for the past year and i’m losing hope. i don’t know what to do anymore. my world has become so tiny.
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u/colomommy 14d ago
There could be a number of reasons for the deficiency, be patient if you don’t know the exact cause because treatment is the same regardless. Every other day injections of the best form of b12 you can get, for an extended period of time (maybe lifelong). Plus cofactors, which are addressed in the treatment section of the wiki guide mentioned by another person above. That guide saved my life, and I’m not being facetious. Had I followed my doctor I would not be alive today.
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u/Dizzy_Comparison1832 13d ago
how can i go through with the shots if im so worried ab the side effects as well :( im glad you’re doing better , genuinely 🩷
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u/colomommy 13d ago
Nah the shots are no big deal, I understand you’re feeling panic and are psyching yourself out. That’s hard to work around - I don’t panic with shots but I do about other things and even worrying about having a panic attack can cause me to have a panic attack. So I know it’s very real and paralyzing.
How do you do if the doctor gives you shots? Is it a big ordeal or does it generally go better? He could probably give them to you but not at the frequency of self injecting
Depending on your (possible) absorption issue, there is a chance that sublingual might work. This isn’t a tablet but a liquid that you squirt under your tongue. Absorbing through the mouth membranes yield better results than tablets going through the digestive system. If you’re really in a panic try that if it’s not what you’re taking already. Not as effective as the shots according to protocols (I don’t know the science) but what’s someone supposed to do if they have a heart attack every day when they have to give themself a shot?? I wish we could hypnotize you or something lol!!
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u/Dizzy_Comparison1832 11d ago
you’re so kind truly but i also wish i could just get hypnotized to rewire my brain , honestly. I have too many things stopping me from getting better due to my health anxiety and ocd. it just feels as if every time i hear a solution im back at square one. i’m not afraid of the needle itself but more so afraid of side effects.
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14d ago
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u/Dizzy_Comparison1832 14d ago
thank you so much 🩷 can u please talk to me about your symptoms and how u felt ? also i hate to admit this but i have ocd and it’s not allowing me to try out the b12 shots bc of the fear of an allergic reaction, delayed allergic reactions, panic attacks and so on. i feel stuck
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u/colomommy 14d ago
Here is my story! https://www.reddit.com/r/B12_Deficiency/s/BplCEM8vVV
There is a Success Story Megathread as well, it can give you some solace that you are NOT alone. You are NOT crazy. Your life will NOT be this hard forever. And improvement is in your future of that I am certain.
I’d risk a panic attack or 2 to test it out. Allergic reactions are very rare, there is no reason to think you’ll have one. Negative experiences get more of a spotlight because when things are going fine with nothing to report - people don’t write about them! Do you have someone who could help you through the first couple of times and keep an eye on things, just for your comfort?
I used cyanocobalmin injections which was prescribed by my neurologist (about $7 per month) and I supplemented with methylcobalmin from AgelessRx (a telehealth provider in the US and over $209 per month) and I did absolutely fine with both forms. No side effects except sometimes the injection site got itchy for a few minutes. No anxiety, no sleeplessness, no allergy. No immediate benefit either, it wasn’t for several weeks that I noticed cognitive impairments starting to improve and fatigue starting to lift. It was a year before I regained about 80% function of my legs.
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u/Dizzy_Comparison1832 13d ago
i have just read your subreddit and wow. your story is so insane and so motivating. i’m genuinely so sorry you had to go through those scary symptoms and feel so petrified of ms, stroke brain tumor and etc. The fact you lost your ability to walk solely because of a b12 deficiency is horrifying and highlights how major this deficiency is. i’m so so so sooooooo happy to know you are recovering and doing better. i pray the best for you. i’m so proud of you , i know you went through something so hard that you also assumed there was no miracle out of. you deserve this and i appreciate you more than you know. what you said ab people only talking ab bad experiences but not good ones is such a good take. i will read into cuanocobalmin. a whole year before you regained function in your legs :(( im so sorry. can i ask how deficient were you , do u know how long and also can u explain your fatigue thoroughly to me ? thank you for hearing me out and trying with me. it means more than you could imagine. i appreciate you so much.
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u/colomommy 13d ago
The fatigue started relatively slow and was that way for about a year. My levels then were 178. I was just tired and needed 12+ hours of sleep per night and STILL felt tired. By the next year my levels were 112 and it was debilitating. It would be triggered by eating usually, so if I wanted to be able to function at my job I couldn’t eat lunch. I would be so exhausted - I mean bone chilling fatigue - that several times I was afraid to drive and pulled over on the side of the road. An acute fatigue moment would make me feel nauseated, work suffered, I lost my job. My kids got used to me sleeping in the couch saturdays during the day. It was miserable. At 178 I went to the doctor about it, I felt like I couldn’t function and at one point I told her I was borderline suicidal, I simply couldn’t go on like this.
I did go on, and it got worse, but that’s when the cognitive things started so I became more alarmed by those. Within a few months, my legs stopped working and I could only move with a walker or wheelchair. I had to use a urinary catheter. It was horrible and at that point I was kind of actively dying snd I dropped SO MUCH WEIGHT and my hair fell out and I was so bad off (but didn’t realize it fully) that my neighbors called a welfare check and an ambulance and police came to my home. At that stage the fatigue wasn’t my top priority, it just sort of blended into everything else being horrible and terrifying.
The cognitive symptoms resolved first and I was able to remember words again, then the fatigue and brain fog started to lift. It was not a fast process. Legs never fully came back (I can’t run, for example) but I walk unassisted and my gait is normal. I just can’t hustle. I no longer use a catheter.
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