Symptoms: Hi All I have just read the... - Pernicious Anaemi...

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Alfabeta profile image
7 Replies

Hi All

I have just read the blog on pa symptoms. The Fog describes my symptoms to a T and I had been suffering them for several years before I was diagnosed. I was an English teacher all my life, yet I could not easily engage in conversations because I would forget words and people would either look at me strangely or continuously finish my sentences for me. I thought I had aphasia!

However, the symptoms, for the most part, were miraculously cured almost as soon as the injections began.

Having read the blog, I am concerned inasmuch as my one recurring symptom is auditory hallucinations which is not mentioned as a symptom!

The symptom is: I begin to lose consciousness but do not become unconscious; my body tingles all over; I hear something akin to white noise (like the bad reception on an old radio); then incoherent voices as if one was in a crowded place and heard multiple conversations- this might just be making words out of multiple sounds if that makes any sense.

Only one person on this forum has told me that they have had such symptoms.

It is a worry to me that this symptom was not included in the aforementioned blog as twice a doctor has made the assumption that my symptom is more related to mental health than b12 deficiency.

I know this is not true because the symptom is on a list of symptoms on the b12 forum to which I also belong.

Should I be worried about the exclusion of this symptom from the blog and seek further medical advice or is it's exclusion as a symptom an oversight?

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Alfabeta profile image
Alfabeta
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7 Replies
Foggyme profile image
FoggymeAdministrator

Hi Folkstone. I'm really pleased that most of your symptoms now seem to be under control but can well understand how distressing your remaining symptom is.

First the easy bit...the blog. There are many many symptoms of B12 deficiency and the ones most talked about are the ones that are most commonly suffered by the majority of suffers (wrong though that is). And all the symptom checklists I've ever seen...are all slightly different. For instance, check out the symptom checklists for the following: Pernicious Anaemia Society, b12deficiency.info and b12d.org - they're all different.

I suspect that your worry arises from wondering if hallucinations can really be a symptom of B12 deficiency, since it's one of the lesser talked about symptoms (and perhaps not even know about by many - including GP's and medics).

So...yes, hallucinations are recognised (or should be) as a potential symptom of B12 deficiency. Sally Pacholok states that 'B12 deficency can cause severe mental illness, including depression, paranoia, and even symptoms resembling schizophrenia' (p81) and elsewhere she lists 'hallucinations' (p18) as symptoms that can occur as a consequence of B12 deficency. Please don't misunderstand, I not saying that you have a mental illness ...I'm using this to demonstrate that B12 deficency can cause mental health issues which are often misdiagnosed as mental illness (though the relationship between the two is obviously much more complex than this).

Have you seen Sally Pacholok's book 'Could It Be B12 An Epedemic of Misdiagnoses'. I think,you'd find chapter four very reassuring.

So...in thinking about your symptom: auditory hallucinations. Some of what you describe sounds like some of the symptoms I used to have and still get occasionally if I overdo it or am really tired.

A kind of drifting away..a detachment from the real world...a feeling of not being quite with it...with body tingles...kind of annoying pins and needles in every part of the skin all over the body. And I can hear these pins and needles (what you call white noise): the symptom checklists call it tinnitus.

And I'm just wondering if what you describe as 'incoherent voices, like multiple conversations in a crowded place' is, in part, due to the brain trying to interpret multiple incomplete and confused signals...and failing.

I know that when I am at my worst, I cannot bear being in noisy places...everything becomes scrambled into white noise and the noise actually becomes very painful (in a way It would fail me to try and describe).

So..can auditory hallucinations be cause by B12 deficency...yes (I think Gambit62 has sent you words about this). Will you see this on all symptom checklists - no. Is it a symptom that will be recognised by GP's and medics - most likely not - though it should be.

However, it's really not possible to state for a fact, in a forum like this, that this symptom is definitely due to B12 deficency. But it is safe to say that it could be, that this has been experienced by others (as documented by Pacholok), and that if its is due to B12 deficency, then there is the possibility that it will eventually resolve as treatment continues (though this takes place at different rates for different individuals, so it may take some time).

I feel that you're really worried about this one remaining symptom and that perhaps its more frightening because of its very nature so I'm sorry that I can't offer any concrete engraved in stone answers. Unfortunately, B12 deficency is not like that: it's a sneaky nasty condition, as all here can testify 😖.

Just hoping that something here will give a crumb of comfort and enable you to hang on in there in the hope that this nasty little symptom will indeed turn out to be caused by B12 deficency...and that it will eventually disappear and become a thing of the past.

Take care Folkstone 👍

Alfabeta profile image
Alfabeta in reply to Foggyme

Thank you very much for taking time to reassure me. A very considered and intelligent response and you have made me feel much more reassured. I shall buy the book today.

Cherylclaire profile image
CherylclaireForum Support in reply to Alfabeta

Folkestone, I'm quite sure that I read someone in the forum discussing this issue, agreeing with someone else that they would never mention it to their GP.... anyone else recall that? Perhaps someone with a better memory, although that might be asking too much on this site!

There is always a fear attached that something will turn out to be not a symptom, but just you, isn't there? One of the reasons that talking here is so reassuring. Foggyme has a way of describing exactly how something feels from the inside: about noisy places becoming painful? I just called it 'sensory overload' to my Dr -who then completely missed the point, checked my ears and gave me a nasal spray! At least she didn't offer me Amytriptyline again.

Sensory overload for me includes supersensitivity to light and to smells- which may/ may not exist, can't quite decide. This one IS often mentioned on lists; perhaps because there's no real stigma attached to smelling 'imaginary' smells ?

Alfabeta profile image
Alfabeta in reply to Cherylclaire

Thank you for responding looks like I might have the imaginary smells to look forward too. There is always someone worse off than oneself!

Good luck. It's so reassuring to share.

Cherylclaire profile image
CherylclaireForum Support in reply to Alfabeta

Well, I hope not- pretty sure that it doesn't happen to everyone! Although not all smells are bad ones, no-one wants to do a supermarket sweep when all they can smell is sewage: the trick is to check other faces for reactions when entering: YES, it was just me.

Foggyme profile image
FoggymeAdministrator in reply to Alfabeta

Thanks Folkstone. And here's something I just found that you might be really interested to hear. In his book 'What You Need to Know About Pernicious Anaemia and B12 Deficiency' Martyn Hooper states:

'B12 deficiency can and does lead to patients experiencing a wide range of psychiatric manifestations...[including]...hallucinations involv[ing] the patient hearing, seeing, feeling, smelling and even tasting things that aren't there' (pp188-189).

So there you go....

Book's well worth a read 👍

And just thought of a better word for that not unconscious but not quite here feeling....stupification 😖

Alfabeta profile image
Alfabeta

Thank you. By the way, I forgot to say, your description of the physical symptoms was exactly what I feel but was ne'er so well expressed.

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