This is a copy of his email in answer to my request for more frequent injections.
( I am aware you have been on the b12 injections for a long time now and we have spoken previously about the need for these - the neurology advice was that we can now check a blood test then assuming the level is sufficient could drop to one injection every 3 months. You should hopefully have a neurology out patient appointment pending in order to investigate any other ongoing symptoms now.
If you would like another copy of the letter please let us know. Please do also make an appointment for the b12 injections at some point too. )
I haven’t yet received an appointment to see the neurologist. I have a proven diagnosis of PA but they both agree that 3 monthly injections are enough. I have my own supplies and am currently injecting around every 5 days as I still have some symptoms and struggle if I leave one week between injections let alone 3 months! I will not agree to further b12 testing as my levels are bound to be high. It’s like banging your head against a brick wall!!!
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Thanks for your reply Nackapan. I'm dealing with other health problems at the moment and helping to care for elderly parents so can't face another battle at the moment so will just continue to self inject for now.My dad is in his 90s and has severe long standing health problems. His doctor tells me his b12 is high at 184 for someone of his age. His haemoglobin was 11.2 so he did prescribe iron tablets, these have caused dad to feel very ill and to have diarrhoea so he's refused to take them. His doctor said he would prescribe omemrazole, I'm unsure what to do in this situation.
Yes I understand. I've just had to desl with a load if stuff fir my mother. 91 this month. One of which was ti get her b12 I jections reinstated. Floradix might be better tolerated . My mum. Coukd not tolerate iron tablets either. Spartone is good too . Several throughout the day.
Hqbeva complete review for your dad. Geriatric specialists are good.
Dad doesn't want to bother with any of it, he doesn't want any fussing.
He has been a type 1 diabetic for 60 years and now has severe neuropathy, is blind, severely disabled, has asbestosis, has a urostomy stoma, hearing problems and is now losing his sharp mindedness which is very sad.
I just wanted him to be as well and comfortable as he can be.
Just to jump in on this thread regarding iron tablets. I could not tolerate the ferrous sulphate tablets that the doctors commonly prescribe, but can tolerate ferrous fumerate so may be worth asking for a prescription of those.
Write to the doctor. Ask when it became official policy to treat numbers rather than symptoms. Explain that your symptoms return before the 3 months between jabs is up.
How did your Gp react when you asked when it became official policy to treat numbers rather than symptoms ? My Dr just said she wasn't prepared to argue with me ! It seems no matter which way we turn we cant seem to win.
He eventually agreed to supply me with six vials but said I was to gradually space them out to three monthly intervals, which I haven't as have my own supplies. Next time it was three vials with the same instructions. Now I've been told that I need a blood test to check my levels before I have more injections. I'm now waiting for a reply to my strongly worded email message regarding this.
We ae fighting a loosing battle my Gp is just as dificult hence I am self injecting too. I seriously do not think they realise how debilitating the symptoms are. In fact my Gp didn't even ask me about my symptoms and just acted on bloods alone with 3monthly injections. I did manage to get her to agree to 2monthly but it was a battle.
They need to be educated so keep batting your emails I am doing the same. I asked what guidelines she was using and could I have a copy - I never got one ! It clearly states in the guidelines no point on repeat testing once treatment has started ! What planet are they on ? Mine rechecked my bloods 2 days after I had my B 12 shot then came back with the results all normal - now there's a surprise !
She is refering me to a neurologist so I asked how the symptoms were going to be controlled whilst I await an appointment which could be in the new year - her reply was I dont wish to argue, I thought it a straight forward question, stroppy mare.
Ask for scientific evidence about that doctor’s belief . I would start self-injecting , because you will not find a NHS doctor who will give you weekly injections which you need .
Yes I know, I have been self injecting for a year now. I was hoping to "educate" my GP but now the neurologist (I havn't seen him yet) agrees with his view he definitely believes he's right that once your b12 levels are good you only need 3 monthly injections to keep it there. That any remaining neurological symptoms aren't going to improve, that more frequent injections are only having a placebo effect and that we get addicted!
I cannot see any reason for repeating serum B12 tests after the first demonstrated a need for treatment- other than early on to ensure treatment is making a difference.This is the guidance given to GPs from NICE and BCSH .
You have proven PA (I really hope you have kept a hard copy of that diagnosis) and neurological symptoms. So the treatment (again referring to guidelines) is, for those with neurological symptoms, to have every other day injections until no further improvements can be gained, then one injection every 2 months. This can be found in onlinelibrary.wiley.com
- look for "Guidelines for the diagnosis and treatment of cobalamin and folate disorders" p8/23: Treatment of cobalamin deficiency (current clinical practice as per the British National Formulary) : www,medicinscomplete.com
Even without neurological symptoms being involved, an injection every 2-3 months after loading dose is the current recommended treatment (as per manufacturers' license).
Don't understand how a neurologist who has not seen you yet can know that you only need injections every 3 months either. That could be because I have cognitive problems though !
Thanks for putting it all together here, that will be very helpful when I write my letter. I think it’s the neurologist that has cognitive problems, he believes no one needs injections more regularly than 3 months and that it’s a psychological phenomenon if we become symptomatic prior to this! Even if he believes this to be true where is the harm in us having injections more frequently especially if we are willing to self inject?
I agree. It took the third neurologist I saw though. I paid to see him as discharged by the NHS neurologist as 'addicted to b12 apparently. There is alot of ignorance about regarding b12 . Awful.
I eventually got 2 weekly injections from the NHS. I wanted it on my notes I need them frequently. Alsi incases in in hospital or unable to get my own. It wasnt easy but is possible.
As you say educate as if eveyone has to buy their own and si they know no better and think the regime is fine. Also had to get them to change prescription amounts. As self inject most of them. It cost more getting a prescription than the ones I buy from Germany. I buy all needles ect as they wernt on the prescription!! But that doesnt matter.
I havent a diagnosis of PA but they can find nothing else causing all my symptoms. It was the third neurologist I paid to see was more open one as by chance he was b12 deficient himself and needed more than 2 monthly!! I went to him really fir the horrendous head pains and headaches.
I'm still not well but am improving so everything to sort has been a struggle .
Short sharp letter makes tiu feel better as well.
It shoukdnt have to be a constant battle. Also so much more difficult with covid19.
Take care and get the help/carers you need with your dad I've found that the district nurses that eventually dressed my mums her wound as led to other referrals. Shes actually been seen and heard.
The current PAS research on why some need more injections than others will hopefully put paid to all this contradictory rubbish. Eventually. Meanwhile...you are quite right, Nackapan - if they don't know that any of us are self injecting, they will continue to believe that 3 months' wait will do for all of us, always has and always will. [Unless, of course, they have B12 deficiency themselves !]
"Topics" heading in the right hand column on this page, "All Things Pernicious Anaemia" sub-heading, then "polls" reveals a different take on what is really needed to manage symptoms.
Try them out at home. Get somebody to watch you stand with your feet together, eyes, closed, hands by your side. If you fall over that's a positive. It's really difficult to mimic the increasing swaying of a real positive.
For the Babinsky test get somebody to stroke the sole of your foot with pointed object (pens are good). If your big toe curls downward then you're normal. An upward curve shown nerve damage.
If you do it at home and get a positive result for either then get the doc to perform the test(s). If they show nerve damage ask the doc how that can be psychosomatic. Then ask what the cause is.
I have failed the Romberg test every time at the surgery (meaning it was positive), the GP tested in March when I saw him last. Tried it this morning and am slightly more stable, it took a lot of effort to try to keep my balance, I swayed and after a few seconds I fell. I do Pilates and my balance is awful although much better than it was, this gives me hope that the frequent injections are working although they say not likely after all this time. We tried the Babinsky test today, it was neutral in that there was no movement. I don’t know if I’ve failed it at the surgery as no one’s said and I didn’t know what to look out for anyway. I do know that my responses to the original testing by another doctor showed a problem, my feet were completely numb at the beginning. Now only parts of them have some numbness but they don’t feel right. My hands aren’t numb anymore although I have slight trouble with my ulnar nerve in my right hand when I get recurring golfers elbow which is now slowly receding after about two months.
Stopping B12 treatment for PA (or other causes of b12 deficiency) could put a patient at increased risk of permanent neurological damage including SACD, sub acute combined degeneration of the spinal cord.
Is your GP aware of the risk of SACD if patients are untreated or under treated?
Maybe send GP a letter which has a list of all your neuro symptoms and include quotes from BNF link below that shows recommended pattern of treatment for those with neuro symptoms.
If it's a telephone conversation, you could ask GP to read out the recommended treatment for those with "neurological involvement" from their copy of BNF book Chapter 9 Section 1.2
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest.
Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.
I belong to PAS and have read up on it just can’t persuade the GP’s. I’ve showed them the guidelines but they don’t believe the EOD frequency means for a long time, just initially and definitely not after a year or two.
Have you tried putting your concerns into a letter to GP. I think letters are harder to ignore. My understanding is that letters to GPs have to be scanned and put with your medical notes.
You could copy any letter to GP to the practice manager. Lots of suggestions on what to include in letter writing link in my other reply. Keep letters as brief as possible and polite.
You could include quotes in the letter from the UK documents I've linked to. This makes it harder for them to ignore the guidelines.
Keep copies of any letters written and any received. Sending a letter to GP is proof that an issue was raised. A paper trail is important if there is a need for a formal complaint in future.
Have you considered
including a sentence about the potential for further deterioration such as SACD, sub acute combined degeneration of the spinal cord if not treated according to BNF?
It might make GP sit up and take more notice.
including a list of neuro symptoms especially any affecting spine and perhaps a quote directly from BNF (see link in other reply) that specifies the treatment for those with neurological involvement ?
BNF specifies every other day loading jabs for those with neurological symptoms for as long as symptoms continue to get better then it's a jab every 2 months.
Local Guidelines
Each CCG/Health Board/NHS hospital trust is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. I recommend tracking down the guidelines for your area and comparing them BNF, BSH (see my other reply) and NICE CKS links.
It could be that the GP/specialist are being constrained in what treatment they can offer by local guidelines.
Have you considered contacting NHSE if in England ( see link in other reply)?
"I have failed the Romberg test every time at the surgery (meaning it was positive)......We tried the Babinsky test today"
Might be worth mentioning positive Romberg test in any letter.
Have you asked GP/specialist to check your proprioception sense? Proprioception is awareness of body in space and problems with proprioception can be associated with b12 deficiency.
I think that neuro tests should only be carried out by a doctor at medical premises due to risks of falls. I stupidly did the next test at home and almost walked into a wall so please don't put yourself at risk.
One test that checks proprioception is walking heel to toe with eyes closed.
People with proprioception issues may lose balance if their eyes are closed, it's dark or their view of surroundings is blocked.
They may be perfectly able to walk heel to toe in a straight line with eyes open and then veer into a wall when repeating test with eyes closed.
Challenging GPs can lead to GP/patient relationship coming under strain so good luck.
I’m hoping my gp wrote this on my notes, I told him before the last lockdown that when our security light failed and I came home in the dark I couldn’t keep my balance, this one one of the things he decided to refer me to the neurologist about. When I phoned the surgery to check after the lockdown he hadn’t done the referral so I don’t know if he remembered.
I’m going to have to write as you say as at least it’ll be on record.
"I haven’t yet received an appointment to see the neurologist."
I suggest including a polite request for referral to neurologist in any letter along with list of neuro symptoms.
NICE CKS link in other reply suggests GPs should seek advice from a haematologist for those patients with b12 deficiency with neuro symptoms.
Has your GP done this?
If GP won't refer you to a haematologist perhaps you could request that GP writes a letter to local haematologist asking for advice on treating you.
Sadly my impression is that there is a lot of ignorance about B12 deficiency among doctors including specialists so fingers crossed you get one who understands it.
"I’m hoping my gp wrote this on my notes,"
Have you considered getting access to/copies of your medical notes?
Are you registered for online access with your GP surgery? Should be info on GP surgery website about this.
It's also my understanding that a patient can request access to/copies of paper records as well.
It can be very illuminating to see what GPs have written and what they have not included in a record.
Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
Yes I totally agree with you my old gp told me while back that they done check your level of b12 they just give it because your on it for life but now it's been taken over again by the health authority it's a different story
I last saw the GP in March when he said that he would refer me to a neurologist. Apparently he didn’t actually do it as Covid happened, after the last lockdown I made a telephone appointment and he started the referral but apart from the reply from the neurologist to the doctor requesting more blood tests and his advice as in my post I haven’t heard from him at all. Two of the tests were for Intrinsic factor and PC antibodies to find out why I was deficient, I had already tested positive to both when I was diagnosed with PA last year so the GP agreed these didn’t need to be retested. The others were for vit A and E, both were in range.
Why would you even need to go and see your neurologist again over a B12 injectionso for PA it such basic information and these doctors don't understand it. Even at taking one jab every 3 month your B12 level won't drop. Even giving you one a month. Is fine. And to make matters worse it's as cheap as chips in costs for this remarkable Gold Shot some call it. And it's water soluble you pee away what the body doesn't need
I don't understand why mine was stopped for 2 year holiday I was only on them every 8 weeks but I know people on them every month so why was I refused if there not expensive 🙄
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Why would Active B12 blood test not be recognised by GP when I have lots of symptoms?
worsening neurological symptoms B12 only 3 monthly
Would blood tests 3months after last b12 injection be accurate?
Can b12 get worse even though I’m having injections every 3 months 
My GP wants me to have blood tests...
