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NICE CKS link about B12 deficiency symptoms

Sleepybunny profile image
10 Replies

Hi,

Apologies if this has been posted before. Thought it might be helpful as shows a wide range of symptoms that B12 deficiency can cause. Folate deficiency is also mentioned.

cks.nice.org.uk/topics/anae...

I like the fact there is a note that says symptoms of B12 deficiency can occur without anaemia and without low B12 levels.

Could be a useful list to pass on to GPs.

I take issue with one comment.

For example it say that severe neuropathy does not occur with folate deficiency but I found articles that suggested folate deficiency can lead to SACD, sub acute combined degeneration of the spinal cord.

ncbi.nlm.nih.gov/pmc/articl...

So rather than "does not occur", I think it should say rarely occurs.

Anyone else got comments about the list?

Apparently this list was revised in July 2020 so has been updated recently.

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Sleepybunny
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Nackapan profile image
Nackapan

It doesn't list ; vertigo Balance problems. Hair loss . Light sensitivity. Noises sensitivity. Tinnitus . Autonomic dysfunction. Shaking. And quite alot more ??

waveylines profile image
waveylines in reply to Nackapan

Nor tremors.....ataxia. Still a work in progress!! They should look at Dr Chandry's list far more comprehensive!!

waveylines profile image
waveylines

I believe Martin from the PA Society was involved in getting them to update it. Sadly the frequency of b12 jabs remains a sticking point....but at leastvhe gotvthem to write b12 levels may not be low to have deficiency.

pitney profile image
pitney

Thank you👍

Cherylclaire profile image
CherylclaireForum Support

Thanks, Sleepybunny. Good that this has been updated, and the accepted list is growing.

Agree with waveylines and nackapan. Especially important that the easily visible and recognisable symptoms are included, as these are the most likely to be picked up on within the first 10-minute GP visit (if/when we ever return to this system!)- so might lead to a quicker route to diagnosis, or at least a faster referral to a neurologist !

Shaking: this in particular worries me with its absence. I've been lucky enough not to have personal experience of this but I have seen this in other people with B12 deficiency.

It worries me that, if not included, this highly visible and debilitating symptom might easily be misinterpreted as Parkinson's or other condition - setting GP on a long, wrong path.

A comprehensive list could really help GPs get there sooner : time being vital to successful long-term treatment and management of B12 deficiency.

SaywhatIsee profile image
SaywhatIsee in reply to Cherylclaire

Not sure what you mean by " faster referral to a Neurologist ". I have seen 2, one a neurologist, who spoke at 100 mph, diverting now and again to one of her team, with my electrical test operator the same. I did laugh until the shocks, as it was the same machine, but smaller, that I use as an electrician to test cables. So my knowledge after was zero. I was then referred to a specialist, at a famous hospital. She spoke more normal, but it was just basic info, with the tests, toe, needle pricks, angle walking and hammer on the knees. Her only recommendation was to increase my meds from 2 100mg to 3 tabs, 3 times a day. So again, no info as to who, why, what, where and when. It took me time to notice, that the tabs are only controlled pain killers, and that the max dose is surprisingly 3,600 mg per day.

As you mentioned the 10 min visit, my doc gets round this by stating, that you can only have 1 issue per appointment, so in general less than 10 mins. I also went to a hospital in 2019, and was unusually early, 40 mins, so patient watched. There were 3 different clinics, but all patients were out within 5 mins, including me, the shortest one Ive ever had for an operation.

Sleepybunny profile image
Sleepybunny in reply to SaywhatIsee

Hi,

"She spoke more normal, but it was just basic info, with the tests, toe, needle pricks, angle walking and hammer on the knees"

Did she give you any neuro tests with your eyes closed?

One neuro symptoms associated with b12 deficiency is problems with proprioception sense/position sense/awareness of body in space.

Two tests that can help check proprioception sense are

1) Romberg test

2) Walking heel to toe with eyes closed

These tests should only be carried out by a doctor at medical premises due to risk of loss of balance. Videos of these and other proprioception tests on Youtube.

I stupidly tried the walking heel to toe tests at home and almost walked into a wall.

I was fine when walking heel to toe with my eyes open but when I repeated this with my eyes closed I veered towards the wall and my balance was poor.

If neurologist did not ask you to do any tests with your eyes closed then it's unlikely that proprioception sense was fully tested.

I found that when it was dark, my eyes were closed or something blocked my view of surroundings, my balance deteriorated. I used to dread going to put veg peelings in the compost bin in the evening as it was in a dark corner of the garden and I used to stagger towards it. I also used to fall off the pavement if another person walked directly towards me and I lost sight of what was ahead of me.

SaywhatIsee profile image
SaywhatIsee in reply to Sleepybunny

Thanks. I am not an avid checker or follower of my condition, which I think is mild, hopefully. I am not even sure of what I have got, other than picking up on the words used by the neurologist. But no, there was no closed eyes test, and yes, I have fallen over 3 times in darkness, luckily indoors as Im 6-6. I have also had a couple of near misses in daylight, but dependant on contents around the leg area, so boxes, or turning quick, which I originally put down to age. For those of you who do not know how doctors acted before, check out " Gps behind closed doors ", on freesat, 5select, exactly what you got in the 70s & 80s.

Sleepybunny profile image
Sleepybunny in reply to Cherylclaire

Misdiagnosis of b12 deficiency

pharmacytimes.com/publicati...

b12deficiency.info/misdiagn...

Cherylclaire profile image
CherylclaireForum Support in reply to Sleepybunny

- a longer list than the symptoms list, Sleepybunny !

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