Pernicious Anaemia Society


"Never take kindness for weakness"

Bear the above in mind before reading this post.

During the last 5 years my path has crossed some of the nastiest people I could ever wish not to meet.

Duplicitous liars who are stupid to boot and several of them have been out-and-out thieves.

...and because I'm always helpful, they always expect me to be like that. And besides which, the duplicitous little bunch who came before told them I was stupid/hypochondriacal/munchausen or whatever they were coming up with. Much, much easier to explain things that way than for them to try and understand something like B12 deficiency. Too much for their pimply little brains to cope with. Anyway 'experts' had told them ALL about B12 they didn't have to THINK FOR THEMSELVES.

Anyway, I'm sat here today and I'm reading how Metformin causes B12 deficiency and I'm thinking how I tried to forwarn one of the pimple brains last year- which simply caused her to tell everyone how crazy/lazy/stupid I was, and I'm sat here reading that people with type 2 Diabetes perform badly in cognitive tests and people on metformin perform even worse and people who are type 2 diabetes on metformin but on B12 supplement outperform the lot of them. And the research team want to do more studies into the effects on cognitive function on people with type 2 diabetes.

Ahhhh. Couldn't happen to a nicer woman.

Mad as a box of frogs she'll be by the time she's ...68?

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Coincidentally, I've just emailed the author of a book on Vitamin D3 about the dangers of Metformin depleting B12. The otherwise excellent book (he's researched thousands of papers) had a glowing reference to the Life Extension site, which recommends Metformin for anti aging! I'll be interested to see his response.


The problem with all of these things, whether it be the different vitamins or the different illnesses - all the stuff that is interlinked - none of them understand the true consequences of B12 deficiency. There is only a 'level' of understanding. So they think they know it, usually to the point where they understand that it can cause neurological damage, but then they lose it again usually because they somehow believe that the neuro damage is reversed - or they don't even recognise neurological damage for what it really is.

If you say it causes damage to the spinal cord - they aren't looking at someone in a wheelchair who is paraplegic - so they dismiss it. So, if you like it's all different levels of understanding.

You mention proprioception and nobody really knows what that is.

You're right, it will be interesting to see what the author says...

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Interesting word - proprioception - I had to look it up and have been experimenting putting finger to nose with eyes shut - police test for drunkenness !

Fascinating how differently B12 Def. affects people and their senses. Looking back on sister's progression, we can see in hindsight how many symptoms were pointing to it - e.g. for many years she complained that she'd lost her sense of smell, noises in the ears, and deteriorating eyesight - she was always the one with the perfect eyesight. I believe some people's taste is affected but I don't remember that this was ever the case with her.


I think the best test for a sign of loss of proprioception is the heel to toe with eyes shut.

Like your sister I was the one with the perfect eyesight - and nobody picked up on the fact that it deteriorated from perfect to level 3 reading glasses in 2 or 3 years.

I have big issues, and have for a long time, with all forms of medicine measuring how you are now. Whether that's weight or blood pressure, cognitive function, eye-sight, whatever.

They say, your weight is X and your BMI is Y. You could have lost 20 stone and they wouldn't know. Same with YOUR normal blood pressure.

My blood pressure was always low, if I go into the 'normal' range, I'm not well. But no. will they listen...

I never realised I had tinnitus until several months after I was diagnosed because I thought tinnitus was clicking noises - I 've had these noises all my life and thought everyone heard them!

I don't know about taste but smell senses were terribly sensitive to chemicals. Dreadful - fabric softner in particular!


Heel to toe does make more sense, seeing how many people are affected by numbness and tingling in feet?

Sis too has always had very low blood pressure and can't put on weight despite having Hashi's. My BP went dangerously high before correct diagnosis for Hashi's. I was put on such high medication, I was walking round like a dizzy zombie. All I take now is a combination capsule of garlic, hawthorn & olive leaf to keep it under control. I never really understood how they could prescribe on one BP reading, as it goes up and down all day and then there's 'white coat syndrome' - GP always said they had lower readings when the nurse took it. I finally persuaded them to accept my own readings which were always lower.


My old, regular practice, accepted for years that my BP was low. And I never even knew it. It was only when a nurse said to me one day, "Normal. For you" and I asked her what she meant, and she said I was always around 100/60. But at least she knew.

Go somewhere else and they start talking about 150/80 and they think it's slightly high and I feel like I'm gonna have a heart attack.

The proprioception thing is weird. But it ties in with all the shoulder bumps and walking in the dark etc. I tell you when it really shows - go on a boat. Shortly after I had been diagnosed I went on a boat. Crikey. I couldn't walk near the water's edge because I lost my balance. On the boat, I thought it was moving when it wasn't. That's like the car moving and it isn't, sensation. And I could not look out of a window or anything. I just stared at a book. I would have just tippled in my seat.

Yet I've never suffered any kind of motion sickness before. So, even sat down on the boat, I was having trouble keeping my balance if I looked at the surrounding environment, not jut the water - because it wasn't stable.

About 5 months after treatment started though, I went on another boat and I was okay. Phew!

But it is weird. And it's like your body gets used to doing stuff. You re-train it in a way. I got a new car and discovered, although I had no problems driving it, that when I got out I lost my balance. And I would be like that for the remainder of the day.

That went on for months so I only went on short journeys - 10 miles or so. But eventually I seemed fine. Then a couple of months ago I went on a 50 mile journey. Got out of the car and fell over! It was like my left side had gone all weak. I was like it for the rest of the day. My body was completely out of kilter.

So, what I've decided is that I 'train' my body to become accustomed to certain 'new' experiences, but they are strictly defined. I then have to 'train' it to become accustomed to something else. So it's okay doing the new car driving thing but then it gets used to new car driving for 10 miles and used to me getting out and doing something 'not driving.' But then it doesn't understand going over 10 miles - go figure.

So, when I see articles explaining that people with proprioception problems have to 'learn skills' all over again I know what they mean. I didn't learn to drive a car only 10 miles - I learned to drive. But my body now has to learn to drive 10 miles, 50 miles whatever - it learns to do one thing and then apparently forgets it has to perform other tasks!


Wow, makes me think we take so much for granted with our bodies 'til they stop doing what they're supposed to. Must use up extra energy too having to think in advance what you are having to do and not just take for granted that your body will automatically do it.

Funny you should say - I'd noticed just lately, when I've been driving and come to stop, I feel for a short moment that I'm still moving....(quickly reaching for B12 spray ! )

Interestingly, the author of the above book talks about the body knowing and remembering how it should be and how it will restore itself when given enough D3, but he's talking more about old sports injuries to bones, muscles etc. rather than neurological.


I'd keep an eye on the car moving thing. I suffered from that a lot prior to becoming ill - one of those things, like you have just said, that we don't really notice. I grabbed for the handbrake quite a few times!

I think we are potentially so interesting to medicine and they are really missing something good!

This 'learning' thing is so fascinating, whether nerves or cells or muscles ...all of it is wonderful stuff (if you're not on the receiving end)

I'm fascinated by our environment and how that affects the nervous system - the being in a 'happy' place and the positive and negative effects. That Oliver Sacks observation on how all, that is ALL his patients regressed into trance states when restrictions were placed on visitations and trips. Every single one of them. An exaggeration of a normal functioning nervous system because of the patients had been severely damaged but one which allows us to see how we can be affected in the physical.

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Thank you Poppet for bringing the driving experience up. I will keep an eye on it and supplement more I think.

Thought you'd like to know that I've just had an email back from the author of the book on D3 - he seems a very approachable man. He is going to amend his book on the next update - he hadn't realised Metformin depleted B12. He then went on to say that his father, a surgeon, always dismissed B12 def. but then discovered he was himself deficient when one of his legs stopped working properly.

Such a good, warm feeling to have someone willing to listen and act.

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When your feet go numb as mine have it understandably affects your balance and similarly, when your tongue goes numb your taste is affected. That,s common sense really. There was a 2 year waiting list for me 2 see a neurologist and get diagnosed with pa 5 years ago and the nerve damage in my feet and left leg is irreversible! My life sucks now


I wouldn't worry - worse things happen at sea xx


I bet you couldn't type that quick enough!


no it took me awhile - happy new year! xx


Same to you - and how come you get the happy smiley sun face!


That half-arssed effort is entirely my own doing, a sun-spider.

I take vitamin D - avoided carpal & cubital tunnel surgery so far, yet fingers are pretty well f'd now. (nerve 'entrapment' for 10+ years - or B12???)

but I do admit to getting very sad when (understandably) upset poorly people rant off - and just feel the need to respond... - I can happily delete posts if necessary, nothing's set in stone..


Ooh no, I'm not ranting - this is just me.

I like the smiley sun face and it doesn't look half-arssed at all!


are you OK? (see I typed that quick!)


It worked well.



Oh Good.

Not sure what 'it' was, no worries, as long as something worked... - enjoy your other conversation & apologies for interrupting something (I have no idea what this post is about, even less idea why I joined in! - then again it is Saturday - I never remember Saturdays....) peace on Earth 'n all that Jaz J x


Can I ask - how you manage working with the carpal/B12 or whatever the little norty is?


I just turn up, it's a sit-down job & I need the money! :D

Your post popped up on my news feed - diabetes stuff's too complicated for me except we're all in the autoimmune boat.

btw I get motion sickness too (even when another car pulls off next door, long journeys are a no-no & parking straight) & sudden wobbles walking down steps. Also low buzz tinnitus (I look the wrong direction to sounds) no smell/taste (put off milk in coffee, leave gas on) 'blunting' to fingertips, prescription for glasses always changing & I also don't recognise people.

Got told off yesterday as 'I'm always on here'! - it's safer than out there! As you see I'm in my own little world! J :D

(another frog jumps in box)


Hello Sparerib. I'd got as far as getting a special support thing for carpel t. In right hand. Then read about sea buckthorn and took it for a while, Whether it was this or the higher dose Levo finally kicked in but I now have very little problem with it.


Hi Polaris

Nerve conduction tests were 'inconclusive' for bilateral carpal & cubital T - ortho surgeon wanted to op anyway! meanwhile give me splints to keep them straight when sleeping - I found I was low Vit D - no more pain (still a bit weak 'tho) - I shall have a look at sea buckthorn - thanks, I've just started Levo (tinnitus worse!). J :D


Thank you for this information. I get b12 injections for perniciou anemia and when I recently got diagnosed with prediabetes they added metformin onto my repeat prescription. I guess I should discuss this with my go as my memory and confusion are getting steadily worse. I am 52 and getting stomach pains every morning too. They have recently decreased my b12: to annual instead of 3 monthly as I had a high level of b12 in my blood.


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