Pernicious Anaemia Society
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Feeling "woozy" all the time, anyone else get this from low B12?

Hi,

Looking for insight from people who have experience with the symptoms of low B12.

I do not have PA, but I've had low B12 for at least a year (and probably well before that). Recently, I've also been having increasing problems with wooziness / dizziness for which my doctors (Primary, ENT, Neurologist) don't yet have any answers. I'm wondering if low B12 could be to blame and if anyone can relate to my symptoms.

First, on the B12 front, about a year and a half ago I went to the doc for general malaise and slight wooziness all the time. They ran a bunch of tests and the only abnormal one was my B12, which was 150pg/mL. My blood count and iron were ok though, so no sign of anemia. They gave me a B12 shot and told me to follow up with daily supplements thereafter.

Long story short, the B12 shot was great, my malaise symptoms all went away within a week and I felt great for 2 more weeks... but I also found I couldn't tolerate the B12 supplements, they gave me hellish anxiety and once I realized it I had to stop taking them. I had also switched off of a PPI drug thought to be causing the low B12, so I hoped that + diet would suffice.

Fast-forward to a few months ago, I started feeling woozy again and found my B12 was back at 189pg/mL (highest it got with shot + supplements was ~330). Meanwhile, after seeing an ENT for my dizziness, they did some VNG testing that SEVERELY aggravated my symptoms, and I have not really recovered back to normal. The dizziness I get is not classic vertigo... the room doesn't spin... it's rather indescribable... My eyes feel out of sync with my brain somehow and at its worst I feel like I'm below-deck on a rocking ship. I sometimes sense motion in my vision, esp over a distance, so I cannot wear my contact lenses without getting motion sick now. Similarly, walking in grocery store aisles or other narrow corridors with lots of visual movement as I walk cause me to feel sick. At my worst, loud sounds can be intolerable too, but not usually. I also have much louder than normal tinnitus in my ears (but no hearing loss) and get bad tension headaches.

When my symptoms got severely aggravated, I started B12 shots to try to rule out low B12 out as a cause. I've received 2 1,000mg cyanocobalamin IM injections a month apart now, and while my symptoms have very slightly improved over time, there's not been a large "bounce-back" like the very first time I got a B12 shot a year ago, and most days I can't function normally still.

I'm not totally convinced my low B12 is causing my wooziness feelings, but since nothing else is making sense and my doctors seem stumped, I'm wondering more and more... I have seen other improvements I think are B12-related (I sleep better, less fog & fatigue, less heart palpitations, decreased inflammation / redness in gums, etc), so I know that was causing me other symptoms.

Can anyone relate to these kinds of symptoms when their B12 was low? If so, how did your recovery progress (fast or slow etc)?

Thanks!!

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Hey!

Concerning the anxiety, it is usual that some symptoms become worse before they get better, so maybe it would have been better after a few weeks. How long have you taken B12? Which quantity and which type?

Anxiety can definitely a B12 deficiency symptom, I have had deficiency for at least a year following a pregnancy and I have been very anxious (even panic attacks, derealisation, depersonalisation, hallucinations). I have never been anxious at all before that.

I started to take B12 orally a week ago, and I have experimented this week completely new symptoms (usually linked with B12 deficiency, for instance tinglings in hands or legs or blind eye) while some over symptoms I had on a daily basis these last weeks (anxiety, hallucinations by night, noise in my ears) disappeared. As I read it can first become worse and I can see some improvement for other symptoms, I carry on with 2000 mcg daily.

Concerning the dizziness, it makes me think of three of my symptoms:

- brain fog

- "derealisation" (I had sometimes the feeling my brain was disconnected from my body, my eyes were not centered on my eyelids anymore, it was sometimes linked to anxiety, like if my brain could not bear it anymore and unplugged - difficult to explain sorry ^^)

- seasickness on a boat: before that year, I never had that problem, now I cannot stay on a boat anymore

Is one of this symptom similar to yours?

Good luck!

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For oral supplements, I've tried a few different types. Methylcobalamin and cyanocobalamin both at 1000mcg doses but I usually cut the pill down due to symptoms. I also tried time-release versions.

In all cases about 12 hours after the dose I suddenly find anxiety creeping in, in a very "physical" manner, e.g. I'll be sitting doing something and suddenly I'm aware I'm super anxious and tense and I've no idea why.

I at one point took 1mcg for a week straight and I was a wreck by the end of the week... I didn't know it was the B12 supplements at the time, but I subconsciously had a sense because I was "avoiding" my doses and taking smaller doses. My symptoms were classic for anxiety: racing thoughts, esp at night, disturbed sleep, mild derealization type symptoms (felt like my eyes were 2 inches back from where they should be). 3 days off the supplements and all of this virtually went away.

I've found I can tolerate ~300-500mcg every other day and get minimal symptoms.

Oddly, I've found the B12 shots (1,000mcg cyanocobalamin IM injection) only causes very mild anxiety, NOTHING like the supplements. It's very weird.

I do not take any B12 supplements right now, just monthly shots. The dizziness I've been experiencing lately is not like the anxiety symptoms I experienced before on the supplements, but I DO have some general anxiety overall that is not severe.

Since I've started shots brain fog is now minimal, no derealization stuff in recent memory (thankfully!), and right now the walk to a boat would make me motion sick before I even could get on it :) .

Thanks for the reply and here's hoping your new symptoms start to resolve too!

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Are you in the U.K matt344 ?

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but have had P.A. for 46 years, am on cyanocobamalin 1mg every three weeks, have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember and am still "clivealive" and over 75.

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Thanks for the reply, I'm in the USA. I've never had my folate levels checked (my docs never do tests unless I ask... so I'll have to ask for it).

I did just recently buy methyl folate supplements, but I'm avoiding taking them because after my experiences with B12 supplements I have a ton of anxiety around taking new supplements like this :-/ .

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were the supplements you were given methylcobalamin? some people do seem to react to this type of B12 by finding their anxiety levels heightened.

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I tried methyl and cyano forms, dissolving and time-release variants. All gave me problems. I've only been able to avoid bad symptoms by taking 250-500mcg every other day and even then it can cause mild anxiety. For now I've simply stopped, but I did just get some 500mcg pills so I can take a lower dose more easily.

The B12 shots are fine so far (cyano 1,000mcg), which has me totally mystified. I get a little anxiety here and there but it's manageable.

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may be it is a response to something else in the tablet - certainly is a bit of a mystery why the form of delivery would make a difference on its own.

Hope the lower dose works

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Hi,

As far as I am concerned, anxiety linked to B12 deficiency is also "physiological" (meaning it can happen even if I am on holidays or doing something not stressful at all).

Eyes 2 inches from where they should be was exactly what I experimented: very challenging to drive ^^

Why do you think you lack of B12? Is it coming from your diet?

I am a vegetarian since I was born, no deficiency at all during 25 years until my pregnancies, but then I did not eat enough dairies and eggs to recover from pregnancy and breast-feeding).

Why do you want to take 1000 mcg if you already have injections?

You can maybe limit to 25 mcg (like in Veg1 supplement for vegetarians) or 50 mcg daily to see if symptoms get better and if your blood level increases?

It is true you can take all co-factors (folates, potassium, iron, etc.), instead of taking a supplement you can try to eat vegetables that include them (I don't take supplements but I eat bananas and coco for potassium, lettuce for folates, pure cacao beans for iron, etc.).

Also, maybe you could try also hydroxocobalamin to see if it is better?

I take hydroxo (500 mcg) + methyl (500 mcg) + cynao (1000 mcg), I may have to slow down because today I found a few spots on my body (apparently cyano can generate acnea)!

Cheers

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Fortunately for me the "displaced eyes" sensation has only happened once or twice for brief periods of time. I would have totally freaked out if I didn't know it was an anxiety thing.

I don't know why my B12 is low, I am not vegetarian and eat a typically diet with meat. But I do have auto-immune disease and mild food allergies that might mess with my absorption abilities. I'll probably never know for certain.

Right now I'm not supplementing while on shots and don't really plan to unless it seems necessary to speed up recovery... I'll just work within the limits of what I can tolerate but since the B12 shots give me minimal anxiety / side effects, it'll just have to be the primary way I "supplement" my B12.

The diet route for co-factors seems like a great idea if I can get enough, less likely to have the crazy side effects.

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I get woozy and dizzy all the time. It's only recently went away and that is with self injecting b12 every other day for 7 weeks roughly. Also I got the anxiety but that was mostly before I started the b12.....and only a little since. Coconut water helped that alot ..I must have been low on potassium. If my folate goes down also I get the same. You should probably get them tests done. I only started b12 injections 7 weeks ago as I say .... but I have learned so much in that time. The injections work with the cofactors: folic acid. potassium. B Complex. Magnesium. I also take ferrosulphate as my ferritin was low also. Without these the b12 won't work the same...for a week I forgot a few of these and I felt weird again.

Just a side note: I have not been diagnosed with PA either and apparently not anemic. But you don't have to be aniemic to have PA so just keep that in mind. Some people can't absorb tablet form of b12 so that could be the reason why you felt so good after your shot a year ago? Since then maybe your levels have dropped and you need alot more than 2 injections to get up again? Just a suggestion though I'm not doctor. .... just your symptoms sound so similar to me at the beginning when I started my injections. Luckily b12 shots aren't harmful as any excess in your body leaves in your urine so it's safe even if you're my 'PA'

Good luck hopen you get sorted ☺

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Thanks! I'll definitely look into the co-factors and see if I can get a folate test, it seems logical. My wooziness has been so persistent that I can't work at the moment, so I'm really hoping something starts to help! Sounds like I need to give the B12 shots more time to know if low B12 is the cause or not, but it seems to fit the bill when nothing else so far has.

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I completely understand...I started work in July ..left for 3 weeks as I felt too ill...returned for a week but left again. I'm just too weak and dizzy to be working so I'm taking a few months off...but that problematic with money obviously. just awful...even when I was working i had to spend the rest of the day on bed recovering. definitely look into the pinned posts about cofactors and perhaps more regular shots and see what happens. after 7 weeks of doing this i have had a full week of feeling good ☺ good luck ☺

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Hi Matt

I had almost exactly the same symptoms regarding the wooziness/loss of balance (in my case for example I couldn't do a 180 degree turn from one kitchen bench to the other without feeling like I was going to fall over) and not being able to tolerate a lot of movement/noise around me because it made me feel sick. It was those symptoms (after I lost my balance and nearly fell off the top of a 30 metre high wall in the mine I work in!) that sent me to the doctor to finally get everything looked at and was diagnosed (positive anti-IF antibodies) with PA. It got worse for a short time during my initial loading treatment but has now vastly improved: it still lurks far in the background but can be ignored most of the time, apart from the last few days before I'm due another shot. Also had the brain fog and the sighs pretty bad but they've gone, again apart from the run up to another shot. I'm still working on the best timing for my injections and have drawn them back from every three months to every seven weeks, which seems to do the trick. Fortunately I have no arguments from my doctor or the nurses here (Australia) as we buy our own B12 anyway (once we're finished the loading doses). So keep at it, work out what's best for you, and it'll be all upwards from there!

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Can I ask how long it took to feel better and the loading doses? I've never been quite sure if my levels (which are low but not TERRIBLY low) warrant such strong symptoms of dizziness. I suppose a lot more goes into it than just the serum B12 levels of course.

Glad you were able to get on the right track with things, hopefully I'll be able to do the same.

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Hi Matt. Can't remember exactly but the loading process was fairly long: 6 doses every other day then another six doses given every other week over 12 weeks then I think it was one a month for three months before trialling the quarterly injection which doesn't work for me. So all up it was done over about six months. Felt terrible for a lot of that but then it started to come good. I can't remember my B12 levels either but then the doctor gave me the anti-IF antibody test at the same time as he did everything else and when he mentioned PA as a possible cause of my symptoms during the initial consultation I told him my father had had it so I think that sealed the deal for getting everything tested at once. Then when I came back with a positive antibody test there was no argument!

You will get better, sometimes it just needs a bit of determination to get through the first part!

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Hi. The dizziness and vision problems were what sent me to the doctors to have tests. My dad has pa. my b12 was low but I wAs negative for pa. however I still have regular injections as my stomach can’t absorb the tablets.

The eyes were awful. I couldn’t focus on something moving past me at speed. It was like a blur of light going past. If I watched a film with fast moving objects in it I would go white and feel really sick

I had loads of eye tests and they said it was the deficiency making my eye muscles unable to catch up with things moving.

I also feel wobbly when In a shop with big aisles of clothes, etc. It’s def affected my balance.

I had brain scans because of this to check for ms, but the neurologist said all my symptoms were down to low b12.

I think you need injections.

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