Hi everyone I hope you’re all doing ok.
I’ve been on b12 injections for about 3 years after being diagnosed with a b12 deficiency and a blood level of 71 nmol. After a couple of years of an injection every 8-10 weeks I started having weekly/fortnightly injections about a year ago and I did feel much better, all of a sudden in the last couple of weeks I’ve been suffering with pins and needles in feet and lower legs?! Any ideas people?
Thanks
Ask to see a neurologist.
There are over 80 possible causes, some worse than others. The timing suggests that it isn't B12 related.
I would check if you need any vitamin supplements. Have your iron checked. Ferritin too.
I got new symptoms of burning fingers .
Its seems to have gone.
Perhaps keep a symptoms list.
Might be a blip or a tweak needed with b12 regime?
I'm newer to this than you but have never been symptom free yet and at times you think somethings gone then it revisits??
No rhyme or reason at times.
Hope it passes
I’m going to assume my iron is fine as I take a daily iron tablet and it was tested in feb and was fine. I’d be surprised if it was folate. I’ve never really been symptom free either in all honesty. Had the odd days/weeks where I felt good etc.
Think part of this is accepting I’ll never be right, sadly think the damage is done having such low levels for so many years and undiagnosed.
Thank you.
Yes. I'm trying more frequent b12 I jections to see if I can improve
Obviously get checked out but I think you will be in for a wait in the current climate. I'm waiting from an accepted referral made in early January. Neuro opthologist.
I asked for the promised referral to ENT just to get into the system for when appointments start again.
Gp said no referrals being g accepted unless cancer suspected or anything else urgent.
I would still put your symptoms in writing to your Gp. Will go on your notes then.
I hope you do conti ue to make improvements. T C
As fbirder suggests, new neuro symptoms should be reviewed by a neurologist.
However, I’d also be considering whether or not your current injection regime is sufficient as you say you’ve never really been symptom free.
For myself, I found that over the first 2 or 3 years of treatment I had to increase my injection frequency from 2 monthly to monthly to weekly and I’ve now settled on twice weekly. I often wonder whether this is because my PA has ‘progressed’ and maybe at the start I was still absorbing some B12 from food but by now the gastric parietal cell and IF antibodies ensure I absorb little or none. Alternatively, is there some mechanism in my body whereby a high level of B12 circulating in my blood stream from the injections has caused me to need even higher levels. Who knows, but I wish there was more research into the matter.
Me too!!! It’s so frustrating! I’ve done exactly the same as you, gradually got more and more frequent and do begin to wonder if there is a supply demand thing occurring? Funnily enough I’ve done two this week....it’s all trial and error. Did you up your folate with extra injections?
No I haven’t upped my folate. I take a multivitamin every day and if I have a day that I eat no green veg (rare) I’ll take a 400mcg folate/folic acid tablet.
The last blood test I had, about a year ago, showed my folate level to be at the top of the range so I don’t need to add in any more.
I’m wondering whether to go two weeks just to simply see how I feel. I sometimes wonder if I’m over critical of symptoms etc. Everyone has good days and bad days, nobody over the age of 30 gets out of bed and feels great everyday. I really wish more research would be done.
As fbirder pointed out there are many causes of pins and needles. I think his suggestion to get checked out by a neurologist is a sound one. You don't want to wait until the progresses to a point where it can't be fixed or causes more problems.
Low or high levels of copper can cause neuropathies. Same with high levels of some the other b vitamins. For this reason my neurologist actually advised me against taking a B-Complex.
Indeed.
When my neurologist was investigating me, with several students in tow, he asked how often I was injecting B12. When I told him it was twice a week, one of the more eager students said 'Might that be the cause because high B12 can cause neuropathy'. He was quite gentle when he told her that she was thinking of B6. I was impressed.
I don’t supplement any multi or complex vitamins. Take all mine individually for this exact reason. High levels of copper? Didn’t know that, thank you, I will take a look and do some reading.
I get them too, on my extremities sometimes when my b12 is low, but in the past year, I also get the top surface of my legs go totally numb and painful often. I haven't been to the doctors about it yet. I am sorry I cant help but you're not alone x
Ah that would make sense. I will have to go the docs about the pain and numb as I haven't had any trauma in my body to my knowledge apart from this, although I do also have Crohns disease and Arthritis which are both often connected to PA. I just have constant pain, just some days more painful than others x
Ok thank you
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