I've been trying to get my doctor to let me have B12 injections more frequently. I am currently having them every three months am noticing some improvements in my symptoms initially but the benefits seem to wear off quite soon after a few weeks I would say. Some of my symptoms don't seem to be improving yet at all. She basically said that the dose they are giving me is so high increasing it won't show me any more benefits. She did another round of blood tests 3 days after I had last injection, which showed the B12 level as ok, but from what I've gathered from here once you start the injections the level is a pointless measurement. My blood tests are consistently show red blood cell distribution width as being way above the normal range. I understand this is an indication of PA. A couple of other things are consistently high IgG level which I understand could indicate a autoimmune condition affecting the nervous system. My iron levels are also consistently below normal range. So what I want to know if anyone can help is, if the B12 injections are working at the current frequency, should I see the red blood cell distribution width start to move towards normal levels? I'm taking iron tablets but maybe I need to take tablets with a high level or iron? I'm also waiting for an appointment at the neurovascular clinic as my GP contacted the hospital about the neurological symptoms I'm getting. Is that the correct referral though and are they likely to help me? My GP seems to just keep repeating blood tests for the same things, the results are always the same but she's not offering any possible reasons or solutions. I know people on here self inject and I'm considering this also, but would be better to get it sorted out through the doctor if possible. It seems strange that the condition is so badly understood by GPs as it's not like it's something new my nan was having the injections in the 1950s I think, you'd think the understanding would be very good across GP practice by now.
Couple of questions re blood results - Pernicious Anaemi...
Couple of questions re blood results
I just posted a link for a recently published research article on treating B12 with injections as needed, rather than the strict starvation schedule doctors seem to think will suit everyone.
Definitely worth a read and even to take to your doctor!
Repeating blood tests to check serum levels is indeed pointless once supplementing has started.
Hi Dfthbhjj,
Here is the link to the research article PlatypusProfit8077 was referring to....... journals.sagepub.com/doi/10...
Definitely worth a read.
This sounds really cruel .This G.p clearly has poor understanding of your condition.
The NICE guidelines clearly say 2-3 months .
See another Gp.
B12 levels being tested is a sure sign this G.p has not read enough on the subject.
Suggest they get advice for professionals from PAS .
I told mine it was available.
Ask for a 'trial' of more frequent b12 injections as nothing else found to treat.
G.ps can prescribe in the patients best interest .
Meanwhile consider buying your own.
I did both.
I managed to get eventually a 2 weekly NHS prescription.
A neurologist backed this .
Alot of opposition from Gps peers
A partner emailed anothef neurologist for advice to cover his back.
When yet again regime challenged with no alternative kept my symptoms at bay.
Nurses ,Gps even pharmacist admins have questioned my regime ,even cancelled prescription ay times.
I do subcutaneous b12 injections at home.
IM at the surgery by a nurse 6 weekly
Both work .
Just darnt change a thing !!
To date 5+ yesrs on nothing g else has been found to be treated .
A long haul to see gradual improvements.
I've tried in the past to reduce the frequency requested by G.p with oral B12 .
That trial failed 3 wekly was tge biggest gap a few times and a mistake.
High levels are needed in your blood to access the B12 to cell level .
Going by blood test levels as so many Gps do is a mistake with B12 .
My last test wax 3 years ago as done with folate .
Over 2000 pg/ m/L B12
As expected on Injections 💉
Your body, your symptoms.,your life .
Hi, I am interested in changing to subcutaneous injections, can you give me some tips please? Where to get syringes, how to do it etc. Thanks
I get it from exchange supplies. 2ml syringe
30G for injecting ( 27-30g suitable)
1/2" long
21G needle for drawing up b12
I use s snapit device for snapping off tok of ampoule
I choose to use alcohol wipes
I inject in outer thighs
Stomach 2 " away from belly button
Hips
Upper arms can be used
Make arill of flesh .
Syringe 8nnirmsl way .
I count to 10 and slowly withdrawal the needle
Had no trouble for over 3 yesrs now
Thanks 😊
In response to Gobbozoid's post today about B12 temperature during transit, Deniseinmilden said that, 10 years on, she is doing well, is busy, got a horse, riding a bike ..... !
Onwards and upwards ( just very slowly !)
Such good news!! 👍 Tyres pumped up again !
Can happen ...... does happen !
I would also highly recommend learning about self injecting.
It is very easy, quite cheap and means you can take control of your treatment. I am doing my own as I really got fed up of battles with the doctor!
I understand your bewilderment that your doctor and many others don't know much about b12 deficiency. But they don't. But it's worse, they also don't know much about hypothyroidism either which some of us also have. But it's worse still... I won't go on but they don't know very much about many conditions nor are they skilled at seeking out effective treatment.
So this leads to the second dilemma. Namely it would be best to get it sorted out with the doctor. Which is true. But if it probably isn't going to happen because it would require re educating your doctor and changing their professional view of their relationship with you.
So we end up here. We know far more than our GPs about b12 deficiency and we have become skilled in personalised medicine, are self treating and keep learning about are condition from the experience of others.
A cynic might say it's all anecdotes. But this is wrong it is firmly based on science, medical best practice and additionally on the experience of thousands of people otherwise known as data!
Hi Dfthbhjj,
Sorry, I have time restraints so will be brief. According to the British Society for Haematology once 1mg/ml of Hydroxycobalamin has commenced there is no point re-testing your B12 levels. They should be high, saying anything from 1,000 to 2,000 ng/L.
Some lunatics has told some Software Engineers to type into computer programmes :-
If over 2,000 ng/L patient has enough stored in liver for 2 years. No further treatment required.
We cannot store B12. [ Bang head on wall ]. This disease/condition is symptom based. So, do not get hung up on :-
i) high IgG level
ii) red blood cell distribution width
They are just numbers in units and do not describe pins and needles, dizziness, poor balance, blurred vision.
Please join the Pernicious Anaemia Society to get accurate information. pernicious-anaemia-society.org
Plus, buy or download Dr Joseph Chandy and Hugo Minney (PhD)’s book Vitamin B12 Deficiency in Practice.
Keep a symptoms diary. I strongly advocate self-injecting. The neurologist will most probably not know much more than the GP. Not their fault.
The NHS and the world has changed since the 1950’s. I pose these questions though :-
1) Why did the managers at the Countess of Chester Hospital let a particular nurse carry on working when a Consultant noticed very serious discrepancies ?
2) Why did those managers give the Consultant an extremely hard time, his work life awful and make him apologise ?
3) Why did it take 7 neonatal consultants to go to management with their very serious concerns and yet they still wanted to brush it under the carpet ?
To stop them re-testing B12 levels mistreatment or post treatment, do not offer your arm. Tell them and get them to write it down, I do not consent to you re-testing my B12 levels. Then pause, smile and say, If you do, then it is the tort of battery. You do have a team of corporate lawyers, do you not ? Then smile very sweetly.
Your iron, sorry you did not provide details. Please note that many of us have difficulty reading, so please use spacing in text.
Diolch yn fawr.
Your experiance sounds so similar to mine, the blood test gp's do looks at serum b12 levels which will be high as you just had an injection, they never do the active b12 test which shows the b12 that can be used by your bodyThey shouldnt test once you start treatment go by symptoms instead. If you are being referred to a neurologist that may help, but from what I have learnt you will never get frequent enough injections from the nhs. I have gone down the route of treating myself, as you have neurological problems its important you get help sooner rather than later, There is great advice here from people more knowledgable than me that will help you,good luck
Just to mention it is possible on the NHS but by no means easy.I struck upon a third neurologist seen for migraines.
He helped by writing to Gp.
Initially ignored 🙁
So embarked on getting my own.
My initial treatment again as nothing else to treat was every other day for about 5 months . Gp exasperated with me I think bug finally saw and listened and kept that prescription going
That G.p had opposition from peers .
The more people are able to put their case the more the word is spread for awareness/ education.
This forum was /is a 'life saver '
Information from PAS
And other B12 charities invaluable.
Real people, real symptons
,real 'case studies.
I agree treatment ASAP.
I agree self treatment also whilst getting what you need from the NHS.
I know I've gone as far as I can go with the Nhs and presently have a 2 weekly prescription of B12.
Some 9n here prescribed more .
I'm glad it's on my medical records .
I know it's not easy .
I know finding that Gp to listen or one with an open mind not easy.
1 out of 3 neurologists had taken an interest and read everything available.
1 stated it was toxic and a I was addicted !!! And to stop and take amytripyline.
I personally keep the well read neurologists letter I was copied into very safe.
Condoning 2 weekly b12
Condoning sc Injections at home .
I notice letter nowhere to be found on my NHS app??
Still awaiting requested medical history records .
Also hang onto a email sent to senior gp on request by them az again regime disputed .
That reply stated to continue with 2 weekly if on the patients best interest.
I.T notes can disappear .
Well not disappear but withheld by practice for their reference only.
Paper in hand can't
My b12 levels were 812 ng/l and that was 3 days after the injection, I know as everyone has said the level is an pointless measurement anyway but it's not as high as it could be even. The main benefit I'm feeling after the injection so far is the fatigue is lessened for a couple of weeks after the injection. So far though the pins and needles, numbness, burning sensations in my hands arms and feet aren't really improving much, shortness of breath is no better, excessive sweating still bad, vision problems etc etc. If I was to start self injecting, what would be a sensible regime to try? How long does it normally take to see improvement in the neurological symptoms? I realise this varies from person to person, but would be nice to have some idea of what to expect, I think that my symptoms probably began around 7-10 years ago and have got worse over time.
Is the referral to the neurovascular clinic the correct one? I think my doctor is putting my neurological symptoms down to being some kind of stroke or mini strokes etc, but I am pretty sure it's all B12 related and I'm pretty sure I haven't had a stroke etc, surely I'd have noticed something?? I guess when the appointment finally comes through I just need to go and see what happens.
The other thing that puzzles me is the B12 vials are hardly expensive, and ok you have to have a short nurse appointment for the injection, but compared to so many other drugs/medical procedures, it's cheap as chips, so why the reluctance? Normally when they want to discourage something cost is the biggest reason.
Dfthbhjj,
Please ignore the 812 ng/l.
Your symptoms are : -
fatigue.
pins and needles,
numbness,
burning sensations in my hands arms and feet,
shortness of breath,
excessive sweating,
vision problems
Injections of 1mg/ml Every Other Day until improvement. Then review the situation. When you have a symptoms diary and you listen to your body, notice symptoms are creeping back you inject again.
How long for improvement in neurological symptoms ? It varies depends on length of deficiency, severity, age, height, weight, how active you are, other pre-existing diseases, medication, gender, menstruating, pregnancy, menopause, life events such as moving home.
Best to see neurologist to rule stuff out. Yes it’s about £20.00 to pay the nurse to inject you, not the cost of the medication. Please know that I am medically qualified. If you really want to know all about the BS, I had to put up with working in a hospital, paying and taking nappies to work out of my own pocket. Not being able to take time off work when my Dad had a heart attack then yes, I’m more than happy to keep my mouth shut. Two days ago, the new Health Minister stated something very interesting about the NHS, something along the lines of its broken.
Dfthbhjj, it is your body, it is the only one you have. Learn about it, read about it and please, look after it.
😘
Hi,
I left detailed replies on this thread that should have some useful info.
Help Needed! Have I got Pernicious Anaemia?
healthunlocked.com/pasoc/po...
I'm not medically trained.
Advice on blood test result
Advice on blood results please
B12 blood tests after supplementing?
Burning Mouth Syndrome?
