Hi, i suffered a deficiency 4 years ago and it took 6 months to heal. (Just by taking high supplements). Now i think it may have come back as some of the same symptoms have come on suddenly.
Foggy head
Boughts of anxiety
Weakness in legs
Fatigue
Vision problems
Sleep disruption (i have no problem falling asleep but i wake up 6 hours later)
Loss of appetite
I feel colder than usual
Shortness of breath sometimes
I'm more emotional
I'll be ringing my doctors today to try and get a blood test, if it comes back low (above border) then I'll know it's the deficiency. (As the past week I've been supplementing).
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Nathan12345
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Hooe you get to the bottom of it. On all that time did you take supplements daily? Maintenance is needed in supplements or I jections if you cant maintain levels.
I didn't take supplements daily but i did take them every now and then (when i felt some symptoms). Looking back I've shown symptoms for a couple of months. Hand tremors, headaches, aching legs. And i will. I'll ask for vitamin b12, folate, iron etc
Also this symptom, ear pressure, as strange as it might sound i had that symptom too when i had the deficiency.
Had a course of B12 injections 3 years ago (5) and was great for a couple of months, the jags helped immediately. Symptoms returned and GP apologised that he had not explained that I should be on jags for life. I now have an injection every 3 months and feel OK, some people need injections more frequently, we also must take folate tablets daily. Hope this helps
Can a low level of folate level indicate b12 deficiency? I have all those symptoms above plus fast heart rate, tingling sensations in hands and toes sometimes even face. I am just sick and tired of doctors not taking me seriously and I just feel awful to be honest.
i would get your b12 and folate levels checked. Take a b12 complex supplement. It does take a while to get better if it's just a deficiency. If not and you have P.A then you should be having b12 injections.
Thanks for responding x some blood results just came back and they said my folate levels are very low. They prescribed me folic acid but just wondering if I may be deficient in b12 because a lot of the symptoms I have. Doctors don’t seem to be taking it serious I’ve had these since birth and it just seems to have gotten worse in terms of heart as well just been diagnosed with POTs I wonder if it could be that causing it.
Pots is Postural tachycardia syndrome which is an abnormal increase in heart rate that occurs after sitting up or standing. Some typical symptoms include dizziness and fainting. Have u ever had the b12 injections?
My daughters POTs I'm sure was caused by undiagnosed vit b deficiency for years. . Sge also had HEDS .
She was was wrongly diagnosed with fibromyalgia . Just awful.
How you can get more trsts for b12 again my daughters folate was low and is okay now on daily 400mcg folic acid. Her ferritin in her boots now so I would get regular bloods to test what you need . Also thyroid . T C
Well they do happen together as does hypothyroidism .
As my daughters levels had got so low and she had the megobalastic anaemia discovered after heart palpitations and fainting all day. . The autonomic dysfunction can be a consequence. Another condition little is k own about. When able swimming is her saviour . She eventually had tk go on medication for POts .
I got mine under control with changes to diet. Lots of salt and increased water intake. Haven’t had an episode in a while now, had to change the way I exercise too.
Yes that's what my daughter did. She put huge efforts in . H8ght salt. Gallons if water. Ni caffeuebw . Ni gluten . Ect. Lots of pysio to strengthen calves ect.
Hooe that now it's worked for you it will continue.
Unfortunately after being admitted to hospital after too many episodes and then the inability to eat it was whilst in hospital b12 deficiency found. A tilt table test repeated and the medication started. This was after ? 2 years of thises particular symptoms. Before a wrong diagnosis ic fibromyalgia She sisk had aHED so after 5 years chronic and r acute suddenly some diagnosis s ti treat.
Sounds like your 'caught in time ' I wish you well.
No i haven't had injections. Before when my level was low i asked and i was refused but I've just spoke to a dr now and she said she's gonna check them aswell as a full blood count, iron, vit D, etc. And my symptoms sound like my b12 levels are low again. If they are she'll give me the loading course (injections)
You may need to increase the frequency of your injections. This helped me a lot. You could also need methylfolate, B complex, and SamE to enhance retention of B12.
i take a methylcobalamin sublingual twice a day and since the past 10 days my symptoms have improved. I'm tired but not as tired and my brain fog has lifted. I'm still emotional and have some mood swings. Also legs still ache and still having broken sleep. But I'm glad the brain fog has gone as that was the worse symptom. Also I'm still cold, always cold which is strange because I'm the type of person that wont turn the heating on (even in the winter).
Be aware, if you've been supplementing this could affect your result.. it can raise levels in the blood even if it doesnt make you feel any better. Hope you feel better soon 🙂
I've been thinking that, how high would a week supplementing boost it by? I was going to go off if it was in middle 200s atleast that way it would have been lower prior to supplementing.
I'm sorry, I'm not sure on that one. I had been supplementing when I was tested and my result was 174, the doc's didn't acknowledge that I'd had supplements so it was a battle to get treatment as this result is 'borderline'.
174 is lower than the border, i spoke to a dr yesterday and mentioned what my level was 4 years ago (179) and she said i should have had injections to build it back up quickly.
Are you a vegan? But it sounds like your B12 deficiency was/is diet-related; if supplements are effective, and they correct the issue, this is probably the case.
Since in pernicious anaemia, oral supplements are ineffective, and the condition is for life.
But your issue has taken nearly four years to recur, which sounds like a slow but steady decline, with you getting not quite enough B12 from your diet.
This time, perhaps you can get some dietary advice to avoid a recurrence, or plan to take regular supplements if this isn’t feasible?
And those of us with a B12 ‘flat tyre’ must not envy your B12 ‘slow puncture’ 🤢
It is simply not true that only people with diet related B12D can absorb oral supplements. At least 50% of PA sufferers can also benefit. If this was not the case then how on earth were all of those PA sufferers saved in hospital by eating raw liver prior to injections being available. The oral supplements are simply a more pleasant way of achieving the same effect.
Not sure that I would want to base my own future treatment on this summary of a few small-scale short-term trials that are not necessarily comparing like for like and may have very different ideas on which subjects have / don't have PA to start with !
Kuzminski et al (USA) : in total 7 had PA (according to them)
Bolaman et al (Turkey) : in total 11 had PA (according to them)
..enough for you ?
I found it far too keen to gather information, some of it quite vague, and lump it all together to reach a conclusion - it would, to me, raise far more questions about the original research.
For example in conclusion: "Patient preference should be taken into consideration in the choice of treatment options" - what a telling omission from previous research that is. Also short-term results require follow-up work, monitoring - more than a serum number required in testing efficacy of treatment.
If tablets are so effective from a patient perspective, why do so many here opt for self injection? Hardly the easy option.
Real life outside the lab is not quite so cut and dried: at 120 days after treatment began for B12 deficiency, my B12 serum level was over 2000ng/L. That was in 2016. I still have not yet had a symptom-free day, and my MMA only reached normal level (within range) last year. It was tested 6 times.
Survey results concerning patient preference re. frequency of injections of close to 800 respondents - right here, right-hand column under"Topics"- reveal a far more interesting set of numbers.
Finally, current research is looking into why some need more frequent injections than others. Early indications have revealed a significant difference between these two groups. All those involved (barring the control group) have PA diagnoses.
I'm aware that many PA sufferers can only get their B12 via injections and that some of these have had to turn to self injecting in order to get enough for their needs but this does not mean that many other PA sufferers cannot get their B12 via oral supplements. As I said earlier, the wards full of dying PA patients would not have been largely saved by being fed a raw liver diet if they were not capable of absorbing some B12 when it was being provided in large doses. I just object to the often repeated mantra on here that if you have PA then you are incapable of absorbing B12 via oral supplements when this is self evidently not true.
Perhaps they weren't largely saved. Doubt if there is evidence for this either way.
clivealive was told he could have the raw liver and get 2 years to live - or the injections.
One cannot say something is "simply not true" or an "often repeated mantra" just because it doesn't sit well with you or even is not your personal experience.
And "At least 50% of PA sufferers can also benefit" from tablets ???
I hate to say this is simply not true - but I very much doubt it !
I can say, though, that in this badly monitored, non-control-group, too-small sample of one, after the initial loading doses by IM had been carried out, treatment for the next three months was oral only.
This was patient-judged to be ‘ineffective’, (though stated rather more forcefully), a comment borne out both by external observation, and follow-up blood results.
And I couldn’t tell from that article where passive adsorption is supposed to occur; but I think it presupposes a properly functioning ileum.
I'm not a vegan but more vegetarian diet. I'll have chicken once a month maybe. I don't drink milk or eat yoghurts much. I only eat cheese. I would 100% say that it's because of my diet.
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