I have a PA diagnosis and inject every 3 weeks. My last bloods showed a reading around 400ish when receiving 4weekly shots. Im currently experiencing pins and needles in my hands and my fingers swell when I go on long walks, say 5 miles plus.
Does anyone else experience this? Is it PA related?
Wishing everyone well. X
If symptoms improve and then return before the next injection that suggest that you need injections more frequently. Keep a diary of your symptoms to establish the frequency of injections.
Thanks very much for thatGambit62
Your reading of 400ish does sound low considering you have b12 injections.Injectiin frequency shoukd be symptom led.
We are told testing of b12 not necessary once on regular b12 injections
I've recently managed to get my mums b12 injections more frequent.
She has benefited
As you know Nackapan discussing with doctors and nurses about no need to retest and treatment lead by symptoms is like banging head against a brick wall.GP will only give every 8 weeks. I get rest elsewhere. Gp even said they were low for 8 weekly. Didnt dare tell him 400 was at every 4 weeks. Just no point, soul destroying. Im not convinced my body is able to utilise the b12 once injected even. Same sad story as too many others.
Many thanks
Just try more frequent injections, make sure you are well nourished and give it some time. 
I need to inject every other day to be well, but am very well and live normal life with that.
Well if yhe doctor says it's low he % she may up the NHS prescription.The bloods now done can be acted on .
Point it out. ?
They can prescribe 'off licence ' what frequency they want
'in the patients best interest '
They did the tests and shoukd act on them.
"Im not convinced my body is able to utilise the b12 once injected even. Same sad story as too many others."
I am not a trained clinician, but here is my outlook:
Inject more than body can use: No harm (B12 is not toxic at any level), but assured that body is repairing damage as quickly as possible.
Inject less than body can use: at worst, additional harm; repair of damage less quick than possible, or repair takes much longer than it would take if body had all the B12 it can use.
The medical field lacks useful research regarding treatment of nerve damage resulting from B12 deficiency, so we are all flying in the dark when it comes to treatment. What we do know is that B12 is not toxic at any level, and the greatest risk associated with B12 deficiency is under treatment.
Again, I am not a trained clinician, and I welcome correction of any errors.
Hi WiseGuyThat is exactly my view too, just wish I could self inject. Maybe one day
My GP changed me to three monthly even though PA diagnosis.
Yup - you're not alone doityourself I have needles and pins all over the place in the run up to my next injection. In fact I think I was the inspiration for the song by "The Searchers" in the mid 1960s
youtube.com/watch?v=ugDXpdj...
I wish you well
Oh well done clivealive, made me smile.😂😂
Love your humour Clive and glad to hear your still alive.
Your such an asset and insperation to us all.
HahaHA!
We are all giving our age away remembering this !!!
I enjoyed that thank you. I remember being given a box of singles/ 45s . That ead amongst the other 60s hits.
I loved dancing with my dad to them playing them on the gramophone.
Dudt remember the lyrics though lol
My wife Valerie and I were newly weds when that song was out and she used to give me "needles and pins" for all sorts of other reasons for 27 years and my second wife Gill (of 26 years so far) just gives me "the needle" - every three weeks loaded with B12
Lovely photo.
I've revisited the 60s in s different way as onr of my daughters moved to a house where the previous owner lived to 2 weeks off a 100.
It's like going back in time.
I bet those walls can sing a few songs !
Mum and dad's wedding photos all in black and white ( 1953)
So glamorous as yours is .
Gill is doing well injecting you.
Probably quite 'the pro' now.
Take care .....and let the music play...
Valerie was just 15 when we started "courting" in 1961, 19 when we married and only 46 when she died 30 years ago.
Gill was 46 when we married in 1996 and I was 55, she's now 71 and I'm still "clivealive" at 81.
I've been well blessed with my "two girls"
I read your bio Clivealive at 81!!! You're a real trooper for sure. You're an inspiration that life does go on for us. Beautiful wedding photo. You must be a great guy to have two wonderful wives take care of you so well. 😊
I met Valerie at church on her 15th birthday and our "eyes met across a crowded room" and met I Gill in a crowded Tesco across the conveyor as she worked on the checkout. She worked out that I was a man living alone (with a cat) and I decided that "I could live with that" young lady as she wore no rings so at Christmas after months of coincidentally joining her queue I gave her a card inside I'd written
Now in this season of peace and goodwill
It's time to remember the girl on the tillShe chats as she wraps and she tots up my bill
And although I'm not certain - I think her name's Gill
The rest is history....
That is so sweet Clive! What a gentleman. My dad is 90 and he makes up poems exactly like yours. He can write them about any subject off the top of this head. He writes one in every card he sends.
That's nice to hear. Good job you met Valarie at 15.
Wishing you both many happy years ahead
One lyric .... to needles and pins (uh)
I knew I had to run away, and get down on my knees and pray they'd go away. But still they'd begin (uh) needles and pins (uh)
Because of my pride, the tears I gotta hide.
As ever, a good answer! 👍
Worked for me. Lol needles and pins 📌
Such a great song. Always been one of my favorites.
Hi,
I wrote a long reply then accidently deleted it.
Have your folate, iron and Vitamin D levels been checked recently?
Both B12 deficiency and Folate deficiency can lead to neuropathic type symptoms.
I also wondered how many loading injections you were given when first diagnosed.
If you weren't given the recommended amount then you might have a case for asking for loading injections to be restarted.
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
Might be something useful in threads below.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
Many thanks and thanks for re typing message!I was diagnosed 10 yrs ago when b12 level was 76 and I was half dead. Gps had constantly diagnosed stress!
Full loading dose as to guidlines then every 12 weeks. I got every 8 weeks after making a fuss a few years ago. I Decided this wasn't sufficient but GP not able or willing to increase. Folate not been tested for sometime but i suppliment.
Just need to increase injections I think but can't quite manage SI.
Thanks for your support.
"Full loading dose as to guidlines"
Do you mean you had 6 loading injections over two weeks or did you have loading injections every other day until your symptoms stopped improving (probably for several weeks)
If you had neuro symptoms prior to treatment starting then my understanding is that you should have had loading injections every other day until your symptoms stopped improving (probably for several weeks).
Pins and needles are usually considered a neuro symptom.
Do you have other neuro symptoms?
Symptoms of B12 Deficiency (folate deficiency also mentioned)
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
b12-institute.nl/en/symptom... (from B12 Institute Netherlands)
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
Thank you so much. I only had 6 loading injections. They ignored my request to be seen by neuro on initial diagnosis and I was too ill to fight. Ended up giving up job as a teacher. You cant teach with no memory ! I suffer from depression, fatigue and headaches but the headaches stopped and memory improved when I started injecting every 4 weeks. Depression gets blamed on other events happening in my life by gp. Cant get through recepionists to see gp only get a dismissive phone call from gp. This just then adds to very low state.
Consider subcutaneous b12 injections at home.I do thus.
Have IM at the surgery
I understood these weren't effective but worth a try. Thanks
They are for me.It's written on the b12 ampoules Box!!! Sc andIM
I'm reient on b12 Injectiibs.
Certainly woukd not jeopardise any improvements made.
Again no research.
Have had both IM and SC for over a yesr now.
I certainly would do IM if more effective or lasted longer.
I keep a log.
"They ignored my request to be seen by neuro on initial diagnosis"
"only get a dismissive phone call from gp"
Have you considered asking in a short letter to GP (and maybe copied to practice manager) for a referral to a neurologist.
Try to include some evidence that supports referral request eg list of neuro symptoms, quotes from B12 documents.
Link about writing to GP about B12 deficiency
b12deficiency.info/writing-...
Have a look at links below as there may be some useful quotes in these documents you could include in a letter.
NICE CKS - When to refer patient with B12 deficiency to neurologist/haematologist/gastro-enterologist
cks.nice.org.uk/topics/anae...
NICE guidance - Suspected neurological conditions
If GP refuses to refer you, you could ask them to write to a local neurologist or haematologist asking for advice on how to treat you.
Be warned that there are specialist doctors who lack knowledge about PA and B12 deficiency so seeing a specialist is no guarantee of better treatment.
"Depression gets blamed on other events happening in my life "
You could point out to them that B12 deficiency can have a massive impact on mental health.
See links below.
b12deficiency.info/mental-h...
stichtingb12tekort.nl/engli...
See section on psychiatric symptoms in next link.
pernicious-anaemia-society....
PAS (Pernicious Anaemia Society)
Have you talked to PAS? They can offer support and pass on useful info.
PAS membership is separate to membership of this forum.
pernicious-anaemia-society....
PAS Contact Details
pernicious-anaemia-society....
Thank you for all that heloful information. Iwill spend time going through it shortly
My wife used to think nothing of a long walk, but now with PA, she is lucky if she can get 500 yards before she literally seizes up, and that walking slowly.
Anybody else here in the same boat?
Enjoy your 5 mile walks while you still can, fat fingers or not!
Oh indeed I do. I know Im lucky compared to others
You might even be deficient in the other vitamin B’s No amount of vitamin B12 is going to take away symptoms if you haven’t tackled the Deficiency in vitamin B2 First. Then don’t forget all the other cofactors…
I had no idea it was so complicated. I target Folate and b12 but often wondered if other deficiencies were in place. Thanks for reply.
I agree with other comments that you most likely need more frequent injections with the pins and needles symptoms. I inject every three days to keep symptoms at bay and manageable. If I go longer then symptoms come back. You mention long walks...returning to more consistent exercise is how I ended up on the plan of injecting every three days. Weekly was somewhat working when I was not feeling well and still recovering/healing from the beginning of all this; however, as I gained more energy and drive, the weekly injections couldn't keep up. It's like my body burns through the B12 quickly. Thankfully I have a doctor that listens and doesn't discount what I saw because he agreed to prescribing more frequent injections.
As far as the hand swelling...mine typically swell on long walks and always have; however, I had a period of them swelling while sleeping and that seemed to clear up as my ferritin raised. Have you had your ferritin checked?
Thank you for taking the time to reply . I think what you say about as exercise increases so do b12 requirements.Wish I had your doctor but SE london GPs dont seem so enlightened.
I also take your point about Ferritin levels and puffy fingers. I must remember to ask for test next GP visit.
Stay well.
Not all doctor’s here are knowledgeable about B12. I credit my PCP for knowing to test for B12 deficiency based on my symptoms but she didn’t really understand my need for injections vs oral. She did refer me to an incredible neurologist though that does get it.
Same as the majority here. Shouldn't be tested once on the treatment. I would always go from clinical symptoms anyway. If you are very active you probably just need more. I have the same symptoms. Good luck
Pins and needles 
PINS AND NEEDLES
Pins & needles
Just wondering has anyone had a positive outcome from seeing a neurologist with pins and needles and numbness in hands and feet?
