I can see that my levels of Iron tend to drop when I space the Iron from EOD to 3 a week. So I'd like to try something that I can afford to take EOD withouth the digestive consequences of it. I've read something about Three arrows, unfortunately I don't think I can get it in the UK
Thank you
Been going through the success stories on here and keep having these moments of recognition where I'm reading someone else's experience and thinking wait, that was me too. Symptoms I never connected to B12 because they seemed too random or too weird.
One that stands out is the night sweats. A couple years ago I would wake up absolutely drenched, like I'd gone to sleep soaking wet. Not just a little sweaty, genuinely looked like someone poured water on me while I slept. Happened regularly for a stretch and then kind of faded. Never figured out why at the time.
Also woke up in fight or flight every single morning for as long as I can remember. Thought it was anxiety or trauma. Turns out demyelinated autonomic nerves don't regulate the cortisol awakening response very well. Makes a lot more sense now.
The list of things I spent years trying to explain separately that turned out to be one deficiency is honestly wild in retrospect.
What were your most unexpected or off the wall symptoms before diagnosis? Especially the ones that seemed totally unrelated or got dismissed by doctors.
Anyone else feel like they are losing control because of the big changes that occur with b12. My OCD is running rampant and I have to keep checking to make sure I'm not in psychosis or completely losing my mind. I have to make sure that my thoughts still make sense, that I'm not losing my mind, even though I'm probably less insane than I was when deficient, and I just have an unrelenting fear that the solution shouldn't have been this easy and soon the floor is gonna fall out from under me and I'm gonna understand why the doctors didn't give me b12.
For those who had long-standing B12 and/or folate deficiency:
How long did it take to recover from symptoms that you’d had for years?
I’m not talking about symptoms that had only been present for a few months, but chronic issues that had been there for a long time.
Things like:
Brain fog
Poor concentration
Shortness of breath / poor cardio
Exercise intolerance
Fatigue
Vision problems or needing stronger glasses
Cold hands and feet
Dry skin
How long did it take before you noticed real improvements? Weeks, months, or even a year or longer?
I’d really appreciate hearing your recovery timeline and which symptoms were the last to improve.
I’ve read about the cofactors and such. I had a functional B12 deficiency. My B12 has always been normal, but the MMA was elevated for over two years.
My provider finally found a B12 I can tolerate and in one month it was corrected. My mma is back in range.
However, my chronically low ferritin and iron are now high. Is this connected?
FWIW, I’m waiting on genetics for mitochondrial disease so it may be something else entirely. The timing is just suspicious.
Has anyone else had this happen?
It is clear that nothing is going to change unless the inadequate levels. Are changed and the useless b12 serum test is replaced by active b12 test etc.
Drs will have to abide by this then saving much suffering.
This actually says if patients are experiencing debilitating fatigue neuro symptoms cognitive symptoms some patients need higher levels etc..and this should be taken into account rather than the range.
Drs are clearly doing people a disservice.
Can't see the bigger picture....just what's in front of them
This is vety useful I find
Says diagnosis is challenging
I started feeling really unwell and I realized looking back is happened slowly and I didn’t pay much attention to it.
I always felt tired and just compensated by drinking more coffee. I couldn’t ignore it anymore when I was exhausted just walking up the stairs at work. I figured it must be my iron because I’ve had anemia in the past , so I ordered my own blood work from one of those places that test 178+ biomarkers to make sure everything else was fine.
My results showed my Vitamin B12 was 318 and my Folate/Serum 20.4. It also had a disclaimer saying if you are between 200-400 you still may experience symptoms of a deficiency even though the test shows normal.
My ferritin is low at 21, even though they say it’s normal I know it’s not. And my Vitamin D is low at 29. My results also show a few levels are off with my liver.
I started supplementing right away with Vitamin D, iron and B12 and a b complex but I’m reading so many different things it overwhelming. it’s only been around 4 days and I already have more energy so I’m not really sure what is improving and which supplement. Alot of my symptoms I was having seem to be the same for a few of the deficiencies.
I have a message in to my doctor but I don’t really trust her advice on everything, especially when most of them tell you you’re fine with low levels because you're in the right range. I'm just not sure on the B vitamins and doses I should be taking. I’m kinda winging it.
Backstory: I’ve been sick since I was a child, diagnosed with IBS, then fibromyalgia, mild factor VIII deficiency, endometriosis and adenomyosis, depression, anxiety, autism, adhd, and some sort of suspected connective tissue disorder like EDS (not hEDS though). I had major surgery last October (10/13/25) and they took out a ton of endometriosis (can’t remember technical term), and a sigmoid resection of my colon. I got an iron infusion 3/14/26). I started taking vitamin B complex and vitamin D (5/22/26). For the last year and a half I’ve had symptoms of worsening fatigue (more than typical) to the point of after eating meals I almost fall asleep standing up. I’ve always had lightheadedness, rapid heartbeat when standing among many other sxs. After both the iron infusion and pills, I still don’t feel any better. I have an appointment to see my GI to talk about malabsorption due to my copper and zinc being low among other things, and then to the hematologist since the iron infusion hasn’t done anything. I feel like my GI may suggest an endoscopy and I don’t know how I feel about that. Any tips for how I should approach this whole situation?
Long story but shortly after i spaced out injections+got exhausted I got some symptoms again with fatigue so i started injecting more frequently again. I already had dpdr but after taking the more frequent injections I now feel it soooo much worse and it's so scary and i have to go to work 😭 I feel like nothing is real and I don't exist I don't feel reality. Would you please share how you manage this if you struggle with dpdr as well. it's terrifying
42 year old female with heavy menstruation bleeding.
Results exactly a year apart - B12 was 522 last year and 367 this year. NHS classes anything above 350 as normal.
My ferritin was 23 (NHS classes anything above 15 as normal) last year and frustratingly wasn’t tested this year so I’m going to ask for this.
I’m having some worsening symptoms, particularly fatigue. Walking for 15 minutes at a leisurely pace has me lying on the sofa for 40 minutes to recover. Brain fog-struggling to get my thoughts straight before speaking and having to restart, feels like muscle pains in my thigh, feel shaky and weak at times, floaters in my vision.
I think I was taking B12 in a multivitamin last year but not this year.
Is there need to investigate further?
Is this a deficiency symptom? It happened after I had some huge health issues from medication in early 2024
The only one on my hands that remained is my index finger. They seemed to slightly come back on my thumbs temporarily but that disappeared again, for about a year
I apologise these aren’t the most photogenic nails and I had to press for them to become more apparent. But I feel like crying I’m very happy and I feel very hopeful. Of course I won’t feel bad if you think it is something else. Don’t worry, I’m a big girl. 🙂
Does anyone know what deficiency (or other cause) could lead to this skin around my fingers?
I’ve had these dry, peeling patches around my fingertips and nails for a long time, and they just don’t seem to go away. They don’t really hurt, but they keep coming back despite trying to improve my overall health.
I am on b12 injections for 4 weeks now of methly and + cofactors ofcourse.
Has anyone had something similar? If so, did you find out what the cause was?
Hello!
I've had a weird start with b12, in April I found out I was deficient/borderline and was subsequently prescribed 1mg tablets to take each day.
To caveat - I NEVER had any really bad symptoms, the only reason they found I was low in b12 was for an unrelated medical query that required a blood test.
I took the b12 tablets for 9 days and started feeling awful fatigue/ aches etc, so I stopped. Two weeks later I didn't feel any better so the doctor recommended I have the injections of which I have had four with no more planned. The last one I had was two weeks ago. Since then I've been taking b12 RDA so only 3mcg along with iron and electrolytes.
My question is can I just stop taking the b12? The wake up symptoms have been horrendous and it doesn't feel like I'm getting better. To repeat as well - I never had any physical symptoms prior to taking b12, it's like it's sent my body into overdrive and now I wish I hadn't bothered because I felt fine before?
I should mention my ferritin is 36 which I know is quite low, and folate is good (22)
Any advice would be welcome!
Edit - I have read the guide :)
Hey folks, I wanted to post here since the MTHFR/B12 subs helped me understand this issue and without it I wouldn't even suggest it to my doc.
As the title states, I came back compound heterozygous with the MTHFR mutation. My understanding is that it means functionally the enzymes are working at 40-60% efficiency. This finding is well supported, and my doc and I decided I will start taking the proper B vitamins/cofactors, Vitamin D + K2, and magnesium glycinate.
Before I share my issues, I wanted to share some noteworthy results:
Abnormal:
Confirmed diagnoses
I know this community is for MTHFR specifically so I may be out of scope here, but I have a hard time believing all of this stems from a functional B12 deficiency, especially seeing my RBC folate and other blood labs relatively normal. My doctor is not thinking it's an autoimmune thing i.e. pernicious anemia. I am curious if it's low stomach acid / SIBO (glucose test pending!)
As for symptoms, I have a whole bunch, I'll limit to top contenders
What would you do in my shoes?
I got my first B12 shot (cyano) 3 days ago and haven’t noticed much of anything yet. Perhaps some more clear thinking the day of the shot. I gave it a couple of days and then re-started taking sublingual methycobalamin today.
Mainly I have been SO tired. That is one of my main symptoms, but I think it’s even worse since the shot. I don’t notice any obvious “wake-up” symptoms. Just so much fatigue. After taking doses of the sublingual methyl I felt a small boost in energy, short-lived.
Should I be feeling something after the shot if my symptoms are actually caused by B12? My levels have been borderline low (300 initial, then in 400s after oral supplementation) but I haven’t supplemented B12 in a month so I thought I would feel something.
I am a Pure Vegetarian Male in my mid 20s.
My Serum B12 was 169 on 1 June 2026 i am taking Methlcobalmin 1500 mcg tablet since 1 June along with weekly dose of 60000 IU D3 and daily 250 IU of D3 along with Elemental calcium of 500 mg, I started taking Folic Acid 5mg on 20 June 2026 onwards.
I noted this Unusual Recovery Sign :
I am not sure but I think my EYE LASHES has become longer and more beautiful than before starting the treatment on 1 June 2026.
Have you guys noted such a change, if u guys have noted some other unusual recovery signs of B12 than mentioned below i would like to know.
So I had my follow up with the doctor - last time he got me tested for celiac, autoimmune thyroid (I already have hypothyroidism), cortisol, and a hormone panel.
He said having pernicious anemia can mean I have other autoimmune disorders as well.
All tests came back fine as far as I could tell! But the doctor said my cortisol of 12 is low. It should be >15. He said to retest in 3-4 months. I looked it up and is this for Addison's Disease? I'm not familiar with what that is, or does. (And I've kind of had it with constantly looking up medical information all the time). But did anyone else here get these same results? Is it connected to the B12 deficiency?
Can't ever catch a break, it seems. As if the PA were a walk in the park? (*cries in total exhaustion *)
Holy shit I've thought there were 5000 different things wrong with me since I started taking the b12. But it's definitely slowed down and I think it's more of a sign that I'm back to my old self. But yeah I have spent probably the last month researching other neurological conditions and thinking I have them even when I literally didn't have the signs of any of them while simultaneously having one long existential crisis.
Hey guys, I’ve been posting in some other subreddits about memory issues I’ve been having, originally, I thought these were caused by a medication I was taking (lamotrigine) or by manic episodes I had. At this point, I’m two months off of the lamotrigine and my memory still hasn’t improved, BUT I went to a neurologist who gave me some bloodwork that showed my levels were around 290. Now, I understand that these are in the “borderline” range but I’m only 29 and my memory is extremely impacted, does anyone have experience with Neuro issues even if their levels aren’t very low?