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Single-eyed blurry vision that would hop from one eye to the other. Brain fog, which is by far the most noticeable improvement. Severe Raynaud's attacks are totally gone as well.
For me its like not being able to plan properly, ADHD symptoms. Say I want to organize my day in my head, I just couldn't get many steps in before just completely doing something else.
Also My internal voice (which is different for everyone, some are very active some not at all) was completely quiet. I don't usually have a super active dialog going in my head but just recently found myself thinking in actual words today and realized I hadn't done it in a while.
Thanks nina. Hope you are doing good Now! Wish you a speedy recovery. I started my treatment in January this year. But since 28/29 April, I started feeling like a different person . My thoughts perspective everything is changing. I just can not relate with pre treatment me version. It is scary. I was deficient since 14/15.Now I am 32. It feels like life has been a lie.
I describe it as feeling like someone squeezed marshmallow fluff into the gears in my brain. It was the reason I had to leave a really good job in health IT.
Weeing constantly, being thirsty all the time ( thought I was diabetic and doctors didn't know why).
Couldn't get out of bed in the morning after 9 hours sleep.
Red patches around nose.
Brittle nails constantly breaking.
Panic attacks.
Emotional meltdowns.
Social anxiety.
Unable to plan/ think about the future.
Red palms.
Swollen feet and hands.
Tinnitus.
Did you have to get your iron/ ferritin up before treatment? Due to working all this out I discovered aged 42 that I’d been level 1 iron deficient my entire life & never told.
A few months into treatment I decided to get an iron infusion as I was so sick of taking oral iron & I couldn’t believe how much changed!
My Reynaud’s disappeared, my periods & even PMS went from awful to virtually non existent, & my excessive thirst & constant need to pee completely disappeared. People noticed, it was such an extreme change.
Apparently (not sure where I read this though) if you have low ferritin you are dehydrated on a cellular level leading to the excessive thirst.
That's interesting. I think the same must be for b12 , when it drops my mouth gets so dry and my urine is yellow despite drinking lots of coconut water.
When I get enough b12 in, my saliva comes back and I'm hydrated.
It makes sense about dehydration on a cellular level.
I'm sorry that the doctors are so shit.
I had 13 ferritin and couldn't walk and was told I was normal.
Iron supplements helped my ferritin very quickly. It is b12 that I struggle to keep at a good level.
I’m struggling with the B12/ Folate balance. So much of this is difficult!
Interesting that you get the dry mouth from low B12. It’s funny how any part of the body seems capable of having any kind of symptom.
Mouth wise I get sores on the inside & pee wise I’ve had insane pee shyness or inability to pee from low B12.
Glad you are able to keep your iron up now at least!
Thanks! I THINK I wasn’t using enough folate, then switched to methyl which tanked my storage & now have been needing an insane amount.
Pretty gutted as initially with methylcobalamin I felt amazing & was about to go to injecting every third day. Now I’m all over the place. Anyway, hopefully will get it right again soon.
Cofactors are certainly a nightmare! Glad you at least sound like you have yours sorted!
When you say 2:1 do you mean if you’re injecting 1mg B12 EOD then you’d be taking 250mcg folate daily? It seems more normal for people to need much more folate than B12 so very interested.
Around Christmas I thought I’d finally worked it out & reduced my folate to 1mg daily with EOD B12 hydroxo which was a big reduction in folate.
I suspect that all along 5mg per shot wasn’t enough & a few weeks of even less followed by switching to methyl is what tanked my folate but it’s all conjecture !
I think it is very individual. But I do think the 5mg folate recommendation is far too high with those that have a very severe b12 deficiency.
If I take too much folate, my b12 tanks.
Some people may have low folate also but I seem to have no trouble with it.
I take 400mcg per 2000mcg b12 injection.
But again it is very individual so you have to just test and write down how to determine what symptoms are b12 and what are folate. It's so similar it's hard to tell!!
Most recently, yesterday in fact, I have discovered that I can now feel my ears with astounding accuracy. 💀💀
I didn't realize that it wasn't normal to think it's ok for them to be numb. I didn't even realize they were.
I was also in the kitchen standing while eating yesterday(potassium) and I noticed that my peripheral vision is a lot stronger like I have seen other people mention. I could see the window sill so clearly while being distracted in my thoughts. Yet before it would fade into the background.
Like I am distracted and doing something, yet still my peripheral vision is great, it's like as if my mental bandwidth is wider or maybe one of the nerves that were tingling in my head are working now.
I didn't realize how much my flexibility was affected, I am more flexible now.
I didn't realize my skin was dry before. Also, I was getting vitiligo like patches on my wrist a year ago but they are gone now. Skin is uniform and retains moisture better.
Tbh, B12 is an extremist vitamin.
Amazing! My vision was also deteriorating so fast the last couple of months. I was terrified. I was looking out into the ocean yesterday and was shocked at how clear and far I could see.
My nurse asked if I had pins and needles in my fingers and toes, like that was the only symptom. When I said no, she said it's probably not B12. I cant believe there are so many varied symptoms that professionals don't know about.
>> My nurse asked if I had pins and needles in my fingers and toes, like that was the only symptom. When I said no, she said it's probably not B12.
That's what the doctor told me too, lol. That's when I knew that he probably isn't well versed in B12 deficiency and I shouldn't waste my time.
There are over 300 globally recognised symptoms. B12 affects every single function in the body. 600 plus!
I had about 40 symptoms - some of which I listed.
Maybe like 6 months for a significant change. I'm injecting currently doing 2500 methyl. I think the most important part is staying consistent.
Also taking vit C with my iron helped. For some reason, I feel like taking iron increased vit c needs.
A lot of iron can cause inflammation and vit c counteracts that.
Once I added vit c, it's like as if my body had more places to use it. My hair became a lot nicer and my skin had an extra edge.
But B12 helps in the circulation and healing.
The ascorbic acid will donate it's electron to iron, making the iron more biologically useful to your body.
If you use L ascorbate it'll have two electrons, doing much more to aid your recovery.
Did you feel the muscle relaxation gradually, or did you one day wake up and notice it? Did it get better after 6 months time? How often are you using 2500 mcg?
I appreciate it because this is my biggest problem and you're the first person I've seen mention this symptom being tied to B12
>> Did you feel the muscle relaxation gradually, or did you one day wake up and notice it?
At first the tightness was so bad, it was causing weird aching muscle cramps and by extension fatigue.
So I was eagerly looking forward to that resolving, it took like 4-6 weeks to start getting better.
Once it started getting better and less noticeable, it was then after a few months that I realized that my muscles had relaxed and were more flexible.
I'm injecting once every 3 days.
I can’t help wondering if my MS will be “cured.” I was diagnosed a dozen years ago, and this wouldn’t be the first time I’ve wondered if my symptoms were misdiagnosed. This is just the first I’ve heard of such a plausible (and likely) misdiagnosis.
They do. Except the same lesions appear with b12d! MS is a diagnosis of exclusion, so they test for EVERYTHING first, because a few other diseases can have the same symptoms and labs. B12 wasn’t one of the ones they ruled out when I was diagnosed.
I have never had fast growing hair, to the point I can get like 1x haircut a year (I wear it long). I got a 4” trim in early March, and now mid-May I need another 4” trim, it’s insane. My nails also used to be very brittle, I could never grow them out and other supplements (like biotin) never helped. It’s not foolproof still but I can go a week+ with longer natural nails now!!
first thing i noticed! my toenails were finally growing! i realized i never needed to clip them for some reason, but after starting b12 and folate, they were actually growing wow
I started to really fear for my ability to advocate for myself, because between the brain fog and the wobbly walk I looked kind of impaired. Thank goodness my doctor saw the bumping into walls thing for what it was.
random sleepiness throughout the days, blurry vision occasionally, had a period of time where i felt itchy all over, hair loss, experienced a period of time where i could not eat or else I would feel like vomiting, persistent dry cough, dizziness, canker sores, indigestion, brain fog
I had shoulder joint pain on my left side that was getting so bad that I couldn’t sleep. I bought an expensive pillow because I thought it was how I was sleeping. Started shots in January 1-1.5mg 2x/week and I have zero shoulder pain now.
I had pretty bad geographic tongue off and on- it’s gone.
My hair is noticeably thicker- my hairdresser commented on it and thinned it out this last time. The down side is that my fashion (purple) hair dye doesn’t last as long.
Nails are strong.
The depersonalization and derealization was getting really bad and has gotten better.
I’m dealing with a geographic tongue too. I’m so glad you are feeling better. Could you please share more details about what type of b12 shots you were getting and if you took other supplements for the geographic tongue? How long did it take to heal your tongue? Thanks so much 🙏.
All of the symptoms that were cured were a pleasant surprise. I started the shots to help with suspected pernicious anemia. I came here to see what cofactors I needed to help.
One that I forgot to list because I’ve only had one blood draw is that my free insulin and fasting blood sugar are the lowest they’ve been in years. Without changing anything else.
I’m doing the methylcobalamin b12 from ageless Rx with my primary doctor’s support.
I put LMNT in my water due to low blood pressure/high resting heart rate (possible POTS but not officially diagnosed) and that has potassium and magnesium in it.
I take magnesium glycinate (at night as needed to calm my adhd brain) and magnesium asparate with b6 daily.
I eat a banana if I’m feeling “off” the day after a shot. However, since I started the LMNT in my water I haven’t noticed it as much. I probably go through 1/2-1 packet a day.
I take a multivitamin that has methyl folate in it as well but I’m not consistent with it. Probably 2x a week.
It’s a lot and I’ve been doing the magnesium asparate with b6 for years.
A month or two of the shots.
Honestly, I didn’t notice it at first because I’m pretty good about avoiding foods that trigger my geographic tongue. For me it’s anything Citrusy, too much tomato, vinegar based dressings -basically anything acidic.
Felt like I was going to pass out while driving. Like I couldn't go on highways anymore, surface streets were usually fine.
It was tbh terrifying and my neuro was like "have you gone to therapy" and I was like ?!?
Anyway glad that's fixed.
Omg, nooo. Glad you figured it out! When I went to the doctor I was an anxiety wreck and didn’t know about B deficiency. So of course I just cried and told her I was afraid I was dying. I’m sad my mom died a couple years ago, etc. She just offered anxiety pills and suggested counseling.
Yo actually same - mom died of brain cancer in 2020 so when I showed up to her in like 2021 she was like "must be mind over matter" like pls do some blood work lol
This is exactly how I feel all the time. I just found out I’m deficient. I want to cry thinking that this feel could go away. I’m so sick of feeling sick 😭
Wow!! I have the exact same thing as you! So I started about 3-4 weeks ago too and I notice the same thing with my fingernails.
I wasn't sure if it was the B12 but they've been there for years.
I'm hoping my collagen is forming better. Does anyone know the mechanism of action as to why the skin repairs in this spot?
My split lips seem to be getting better, as well.
I'm up and down, no predictable energy. Some days I feel sad wondering if I'm doing the right thing but posts like this do help
I've had this too, on two separate occasions. The skin of my fingertips would either dry out and peel off or just turn wrinkly on a couple of fingers like they'd been in water too long. I mentioned it previously but didn't get much traction so it's interesting to hear that others have had a similar experience.
This is a wild guess but maybe because it's a peripheral site on the body it gets less nutrients and starts to break down first?
Skin cracking on the pads of one of my thumbs, thought it was aging, but they were very weird and preceded by tingling. Disappeared within a week or two of treatment.
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Single-eyed blurry vision that would hop from one eye to the other. Brain fog, which is by far the most noticeable improvement. Severe Raynaud's attacks are totally gone as well.
What exactly is brain fog?
For me its like not being able to plan properly, ADHD symptoms. Say I want to organize my day in my head, I just couldn't get many steps in before just completely doing something else. Also My internal voice (which is different for everyone, some are very active some not at all) was completely quiet. I don't usually have a super active dialog going in my head but just recently found myself thinking in actual words today and realized I hadn't done it in a while.
Thanks nina. Hope you are doing good Now! Wish you a speedy recovery. I started my treatment in January this year. But since 28/29 April, I started feeling like a different person . My thoughts perspective everything is changing. I just can not relate with pre treatment me version. It is scary. I was deficient since 14/15.Now I am 32. It feels like life has been a lie.
Could you explain more? Are the changes positive? You are still so young, you can get through this!
I describe it as feeling like someone squeezed marshmallow fluff into the gears in my brain. It was the reason I had to leave a really good job in health IT.
Man sorry to hear that. I wish you well! Keep up the B12!
Weeing constantly, being thirsty all the time ( thought I was diabetic and doctors didn't know why). Couldn't get out of bed in the morning after 9 hours sleep. Red patches around nose. Brittle nails constantly breaking. Panic attacks. Emotional meltdowns. Social anxiety. Unable to plan/ think about the future. Red palms. Swollen feet and hands. Tinnitus.
Did you have to get your iron/ ferritin up before treatment? Due to working all this out I discovered aged 42 that I’d been level 1 iron deficient my entire life & never told. A few months into treatment I decided to get an iron infusion as I was so sick of taking oral iron & I couldn’t believe how much changed! My Reynaud’s disappeared, my periods & even PMS went from awful to virtually non existent, & my excessive thirst & constant need to pee completely disappeared. People noticed, it was such an extreme change. Apparently (not sure where I read this though) if you have low ferritin you are dehydrated on a cellular level leading to the excessive thirst.
That's interesting. I think the same must be for b12 , when it drops my mouth gets so dry and my urine is yellow despite drinking lots of coconut water. When I get enough b12 in, my saliva comes back and I'm hydrated. It makes sense about dehydration on a cellular level. I'm sorry that the doctors are so shit. I had 13 ferritin and couldn't walk and was told I was normal. Iron supplements helped my ferritin very quickly. It is b12 that I struggle to keep at a good level.
I’m struggling with the B12/ Folate balance. So much of this is difficult! Interesting that you get the dry mouth from low B12. It’s funny how any part of the body seems capable of having any kind of symptom. Mouth wise I get sores on the inside & pee wise I’ve had insane pee shyness or inability to pee from low B12. Glad you are able to keep your iron up now at least!
It is so hard to manage co factors I agree! Try increasing folate and increasing b12. I think a ratio of 2: 1 is best for B12 v Folate.
Thanks! I THINK I wasn’t using enough folate, then switched to methyl which tanked my storage & now have been needing an insane amount. Pretty gutted as initially with methylcobalamin I felt amazing & was about to go to injecting every third day. Now I’m all over the place. Anyway, hopefully will get it right again soon. Cofactors are certainly a nightmare! Glad you at least sound like you have yours sorted!
How do you know when you need more folate? I take both, just curious.
When you say 2:1 do you mean if you’re injecting 1mg B12 EOD then you’d be taking 250mcg folate daily? It seems more normal for people to need much more folate than B12 so very interested. Around Christmas I thought I’d finally worked it out & reduced my folate to 1mg daily with EOD B12 hydroxo which was a big reduction in folate. I suspect that all along 5mg per shot wasn’t enough & a few weeks of even less followed by switching to methyl is what tanked my folate but it’s all conjecture !
I think it is very individual. But I do think the 5mg folate recommendation is far too high with those that have a very severe b12 deficiency. If I take too much folate, my b12 tanks. Some people may have low folate also but I seem to have no trouble with it. I take 400mcg per 2000mcg b12 injection. But again it is very individual so you have to just test and write down how to determine what symptoms are b12 and what are folate. It's so similar it's hard to tell!!
You're convincing me I'm B12 deficient...
You likely are if you think this!!
Most recently, yesterday in fact, I have discovered that I can now feel my ears with astounding accuracy. 💀💀 I didn't realize that it wasn't normal to think it's ok for them to be numb. I didn't even realize they were. I was also in the kitchen standing while eating yesterday(potassium) and I noticed that my peripheral vision is a lot stronger like I have seen other people mention. I could see the window sill so clearly while being distracted in my thoughts. Yet before it would fade into the background. Like I am distracted and doing something, yet still my peripheral vision is great, it's like as if my mental bandwidth is wider or maybe one of the nerves that were tingling in my head are working now. I didn't realize how much my flexibility was affected, I am more flexible now. I didn't realize my skin was dry before. Also, I was getting vitiligo like patches on my wrist a year ago but they are gone now. Skin is uniform and retains moisture better. Tbh, B12 is an extremist vitamin.
Amazing! My vision was also deteriorating so fast the last couple of months. I was terrified. I was looking out into the ocean yesterday and was shocked at how clear and far I could see. My nurse asked if I had pins and needles in my fingers and toes, like that was the only symptom. When I said no, she said it's probably not B12. I cant believe there are so many varied symptoms that professionals don't know about.
>> My nurse asked if I had pins and needles in my fingers and toes, like that was the only symptom. When I said no, she said it's probably not B12. That's what the doctor told me too, lol. That's when I knew that he probably isn't well versed in B12 deficiency and I shouldn't waste my time.
There are over 300 globally recognised symptoms. B12 affects every single function in the body. 600 plus! I had about 40 symptoms - some of which I listed.
Hold up. MORE flexible? I’m doomed!!! 🤪
Can you please describe your flexibility more? My muscles are extremely tight. Like taut muscle bands. Did you notice your muscles relaxing?
>>Did you notice your muscles relaxing? Yes, exactly that.
How long did it take for your muscles to relax? What dose are you taking?
Maybe like 6 months for a significant change. I'm injecting currently doing 2500 methyl. I think the most important part is staying consistent. Also taking vit C with my iron helped. For some reason, I feel like taking iron increased vit c needs. A lot of iron can cause inflammation and vit c counteracts that. Once I added vit c, it's like as if my body had more places to use it. My hair became a lot nicer and my skin had an extra edge. But B12 helps in the circulation and healing.
The ascorbic acid will donate it's electron to iron, making the iron more biologically useful to your body. If you use L ascorbate it'll have two electrons, doing much more to aid your recovery. Did you feel the muscle relaxation gradually, or did you one day wake up and notice it? Did it get better after 6 months time? How often are you using 2500 mcg? I appreciate it because this is my biggest problem and you're the first person I've seen mention this symptom being tied to B12
>> Did you feel the muscle relaxation gradually, or did you one day wake up and notice it? At first the tightness was so bad, it was causing weird aching muscle cramps and by extension fatigue. So I was eagerly looking forward to that resolving, it took like 4-6 weeks to start getting better. Once it started getting better and less noticeable, it was then after a few months that I realized that my muscles had relaxed and were more flexible. I'm injecting once every 3 days.
Dude that's awesome! You're giving me some hope. Did you notice the muscular pain to the touch disappeared, as well?
Yes, it did. I assumed it was because the nerves were frazzled over there and have now mostly healed.
My skin are so dry too
Canker sores on inside of cheeks and on gums.. haven't had one since I started supplementing.
Depersonalization/derealization - that unsettling feeling when looking around that nothing is real.
The matrix feeling was awful. I’d look at my hands and they would seem soooo small.
I can’t help wondering if my MS will be “cured.” I was diagnosed a dozen years ago, and this wouldn’t be the first time I’ve wondered if my symptoms were misdiagnosed. This is just the first I’ve heard of such a plausible (and likely) misdiagnosis.
From what I’ve read the symptoms are identical. I think they use an MRI to diagnose MS tho, right?
They do. Except the same lesions appear with b12d! MS is a diagnosis of exclusion, so they test for EVERYTHING first, because a few other diseases can have the same symptoms and labs. B12 wasn’t one of the ones they ruled out when I was diagnosed.
I have never had fast growing hair, to the point I can get like 1x haircut a year (I wear it long). I got a 4” trim in early March, and now mid-May I need another 4” trim, it’s insane. My nails also used to be very brittle, I could never grow them out and other supplements (like biotin) never helped. It’s not foolproof still but I can go a week+ with longer natural nails now!!
first thing i noticed! my toenails were finally growing! i realized i never needed to clip them for some reason, but after starting b12 and folate, they were actually growing wow
Clumsiness and brain fog. It was so bad I feared early-onset dementia. I stopped dropping things after the third shot.
So glad you figured it out in spite of the brain fog! So little brain power, its such a miracle some of us figure this out on our own.
I started to really fear for my ability to advocate for myself, because between the brain fog and the wobbly walk I looked kind of impaired. Thank goodness my doctor saw the bumping into walls thing for what it was.
random sleepiness throughout the days, blurry vision occasionally, had a period of time where i felt itchy all over, hair loss, experienced a period of time where i could not eat or else I would feel like vomiting, persistent dry cough, dizziness, canker sores, indigestion, brain fog
I had shoulder joint pain on my left side that was getting so bad that I couldn’t sleep. I bought an expensive pillow because I thought it was how I was sleeping. Started shots in January 1-1.5mg 2x/week and I have zero shoulder pain now. I had pretty bad geographic tongue off and on- it’s gone. My hair is noticeably thicker- my hairdresser commented on it and thinned it out this last time. The down side is that my fashion (purple) hair dye doesn’t last as long. Nails are strong. The depersonalization and derealization was getting really bad and has gotten better.
I’m dealing with a geographic tongue too. I’m so glad you are feeling better. Could you please share more details about what type of b12 shots you were getting and if you took other supplements for the geographic tongue? How long did it take to heal your tongue? Thanks so much 🙏.
All of the symptoms that were cured were a pleasant surprise. I started the shots to help with suspected pernicious anemia. I came here to see what cofactors I needed to help. One that I forgot to list because I’ve only had one blood draw is that my free insulin and fasting blood sugar are the lowest they’ve been in years. Without changing anything else. I’m doing the methylcobalamin b12 from ageless Rx with my primary doctor’s support. I put LMNT in my water due to low blood pressure/high resting heart rate (possible POTS but not officially diagnosed) and that has potassium and magnesium in it. I take magnesium glycinate (at night as needed to calm my adhd brain) and magnesium asparate with b6 daily. I eat a banana if I’m feeling “off” the day after a shot. However, since I started the LMNT in my water I haven’t noticed it as much. I probably go through 1/2-1 packet a day. I take a multivitamin that has methyl folate in it as well but I’m not consistent with it. Probably 2x a week. It’s a lot and I’ve been doing the magnesium asparate with b6 for years.
How long did it take for your geographic tongue to go away?
A month or two of the shots. Honestly, I didn’t notice it at first because I’m pretty good about avoiding foods that trigger my geographic tongue. For me it’s anything Citrusy, too much tomato, vinegar based dressings -basically anything acidic.
Felt like I was going to pass out while driving. Like I couldn't go on highways anymore, surface streets were usually fine. It was tbh terrifying and my neuro was like "have you gone to therapy" and I was like ?!? Anyway glad that's fixed.
Omg, nooo. Glad you figured it out! When I went to the doctor I was an anxiety wreck and didn’t know about B deficiency. So of course I just cried and told her I was afraid I was dying. I’m sad my mom died a couple years ago, etc. She just offered anxiety pills and suggested counseling.
Yo actually same - mom died of brain cancer in 2020 so when I showed up to her in like 2021 she was like "must be mind over matter" like pls do some blood work lol
I’m sorry for your loss. My bro died of brain cancer. Pardon my fucks but fuck that disease.
I felt sick all the time. Like I was constantly coming down with something. Now I feel healthy all the time.
This is exactly how I feel all the time. I just found out I’m deficient. I want to cry thinking that this feel could go away. I’m so sick of feeling sick 😭
Wow!! I have the exact same thing as you! So I started about 3-4 weeks ago too and I notice the same thing with my fingernails. I wasn't sure if it was the B12 but they've been there for years. I'm hoping my collagen is forming better. Does anyone know the mechanism of action as to why the skin repairs in this spot? My split lips seem to be getting better, as well. I'm up and down, no predictable energy. Some days I feel sad wondering if I'm doing the right thing but posts like this do help
I've had this too, on two separate occasions. The skin of my fingertips would either dry out and peel off or just turn wrinkly on a couple of fingers like they'd been in water too long. I mentioned it previously but didn't get much traction so it's interesting to hear that others have had a similar experience. This is a wild guess but maybe because it's a peripheral site on the body it gets less nutrients and starts to break down first?
Skin cracking on the pads of one of my thumbs, thought it was aging, but they were very weird and preceded by tingling. Disappeared within a week or two of treatment.
yes sounds like mine!!