good morning everyone. I hope you have all recovered from the recent hot weather.
I want to just have a moan please. Having been diagnosed with PA over 40years ago and having monthly injections a new doctor who looked about 12 said my B12 was fine and no more injections needed. I stupidly believed him but started to go down hill to the point I couldn’t chance leaving the bathroom, hardly able to walk and sat in a chair thinking this is it. Thankfully my husband picked up on why this was happening and we changed practices. This wonderful doctor immediately put me on loading doses and I’ve been ticking over for 8 months and starting to feel a bit better except for knee pain stomach aches and tiredness. I had my last injection last week and this new nurse said’ see you in three months’ I said no ‘3 weeks. She said you are under my care now and all my patients have 3 monthly injections. I said but I gave pernicious anaemia and to my astonishment she looked at me like she didn’t know what it was. I’m so anxious now and have to have blood tests next week to see the results and the way forward. Why can’t they leave us alone to get on with our lives which is hard enough anyway without B12. Take care everyone.
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Hedgehogs15
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Thank you clivealive for getting back to me and about the NICE guidelines which I shall read and tell her about. Why can’t they just treat us and let us get on with our lives!All the very best.
I agree re money saving. I don’t remember things being this bad or trying to book a doctor/nurse appointment since lockdown is hard too.I live in Suffolk which is pretty but very rural so half an hour drive to doctors/town.
Thank you for taking time to reply to me. Take care
I'm in Cheltenham so under Glos NHS guidelines. I sent my Dr all the info I found online and on here and my Dr changed my surgery's policy from 5 loading doses to 6. Unfortunately asking for more frequent b12 injections than the standard 3 monthly (one size fits all) didn't change so I started to SI. I still have my 3 monthly jab but have told them I need more so SI. I get the raised eye brow reaction and all the usual comments but I literally don't care. I know what I need to stay healthy so I carry on with my routine. It still astounds me that PA isn't taken seriously by GP's &;medical professionals. I can only assume they have very little or no understanding/training in it.
I'm glad you, at least, got your 6 loading jabs. My present GP is very good. I haven't bothered her about B12 because I now self inject. I had to go to a private GP but starting self injecting in covid lockdown. My private GP said all vitamins were covered in an afternoon [He went to a top University!] Good luck with looking after yourself.
Before leaving your previous practice, did you submit a complaint against the 12 year old GP, not that it would make any difference.
Clearly you were on a treatment plan that was working for you, why did they feel that they need to interfere and change it!!
Who does the nurse think she is, you are under the care of the GP, the GP makes the decisions, the nurse should follow them, regardless of their personal opinion.
I just hope that your new GP is more understanding.
Why do we need GP's anyway, when nurses seem to know it all?
Good morning and thank you so much for your reply which is so straight to the point.I have written a letter of complaint to the previous practice but I’ve never posted it because I hate to complain but perhaps I should. You are so right about the nurse who is very bossy and opinionated.
I’m going to try to book in with one of the other nurses next week but if not I will stand my ground and tell her I want to see my doctor. Fingers crossed. I wish you all the very best.thank you again x
I have had similar "argumentative know it all" nurses. That's why I self inject with GPs' acceptance ,due to the fact they can't afford more than every 3 months. I need much more. Hey ho ,it's works for me. Good luck
Thank you so much and as usual for your advice and being there for all of us.I am due to see this nurse again on 4th august but going to try to get the other one who is half decent. I’m struggling as it is with going 3or 4 week between injections so I know I couldn’t cope waiting 3 months. If all else fails I know you and others on this fabulous forum with tell me how to buy and do my own. Take care. Best wishes.
If all her patients have injections every three months, this can only be because the GPs there have asked for their patients to be treated at that frequency, surely ? A nurse cannot override a GP's decision regarding frequency of treatment.
This only means really that either the nurse is wrong - or all of the GPs are -as the treatment for B12 deficiency is far more complex than one-size-fits-all.
The medical guidance is, for those presenting without any neurological symptoms, after the loading dose, an injection every 2-3 months as a maintenance dose.
The medical guidelines for those with neurological symptoms is that every other day injections should continue until no further improvement can be gained by this -and then a maintenance dose. Nerve damage can take a while to repair - and if not treated properly, can become permanent.
The advice from those consultants who discover DNA abnormalities that mean you are unable to access B12 at cell/tissue level is that 2 injections a week for life are required.
Of course, any GP can individualise treatment on observation or discussion or monitoring their patient - with the patient's welfare in mind. My cousin has her injections evey six weeks for example, and manages on this frequency. Because my MMA remained raised at one injection every 3 months, I had injections twice a week for six months, then reduced to one a month. No, some of the nurses did not like it. The GP spoke to them. This was intended to be my maintenance dose, but it proved inadequate in controlling my symptoms - and I ended up self injecting to avoid losing my phased return to work.
We are not all the same. We cannot all be expected to manage to live a normal life on one injection every 3 months.
A GP should be able to spot the difference between a patient who is doing well and one who is struggling. Your husband can see it, so a GP who sees you regularly would be ideal - difficult to even see any right now, and I don't see this experiment in GP access returning to pre-covid protocol. No-one likes to accept they were wrong.
I would go to your GP and take your husband with you for support.
Thank you so much especially taking time to give such a lengthy explanation. I really do appreciate this and I have taken notes from you and other kind people on this forum. I shall go armed with this information when I see the nurse on the 4th and any trouble I shall ask to see the GP. It’s shameful how we are being treated by the medical profession when all we want are our B12 Injections to get on with our lives. I wish you all the very best. Kind regards
Yes it is. I wish you luck and hope you let us know how it goes. nice.org.uk -the National Institute for health and Care Excellence (NICE) medical guidelines.
(They are currently working on a revision of guidelines for B12 deficiency with the Pernicious Anaemia Society, the B12 Society and medical professionals- due out next year I think.)
BCSH guidelines (haematologists)
BNF guidelines (British National Formulary)
GPs will usually follow advice from these.
Why stop or reduce a successful frequency - and how is a nurse making that decision anyway ? Hope you can get this sorted out once and for all.
Thank you again for all your kindness and I will report back hopefully with a favourable outcome. I feel more confident now with kind people like you on this forum pointing me in the right direction. Take care
I’m sorry to hear how you firstly had injections stopped. Then reinstated as you need them.
As far as I am aware, a nurse can question a doctor’s decision with regards to dose and frequency because yes, doctors do make mistakes when rushed. The nurse is the one giving the medication and they don’t want you to have a ‘bad reaction’.
However there are nurses, midwives, physiotherapists who advance their practice and undertake further courses such as:
Independent/Supplementary Prescribing.
I have no idea if this is the case where hydroxycobalamin is needed. But worth finding out (down the line).
Personally, I’d write to the practice manager, senior partner (stating you had them stopped before, your symptoms, how quickly they returned) and obviously, speak to our wonderful P.A. Society.
Thank you so much for taking time to reply and for your advice which I have taken on board. I shall speak to our senior practise nurse and also try to get a telephone appointment with the kind doctor who reinstated my injections and hopefully have a happy conclusion. So many of you on this forum have given me lots of important advice to move forward with and I really do appreciate it. All the very best.
I'm so sorry you are going through this it's very upsetting they refuse to listen but before you write any letters of complaint try a letter of concern first about your symptoms since lack of injections and go armed with information. I went down this complaint route they all stuck together and made every appt unpleasant. I dreaded every appt after that. Hope you get sorted.
I had issues with my new surgery during Covid after the first lockdown, the Head nurse at practice cancelled my injection and said I needed to take tablets, as GP has requested this! When I spoke to the GP she said it was the Head Nurse's decision, I said I don't care whose decision it was to change, please change it back, as I can't cope without having it, they agreed only if I had blood test, I told gp that once you start treatment for Pernicious Anaemia then it doesn't show up, she said, she still wanted the blood test, I said have you actually read my medical records, she said No, I said please read them, I was told I would have these injections for life, if you don't want to give me these injections then my life isn't worth living and I would be better off dead (basically saying I'll commit suicide - which I don't believe in), she asked me if she could ring me back! An hour later, the main GP of the practice called me, they had read my records and that they were instating my B12 injections, I then said every 10 weeks (was 11) they agreed to every 10 weeks, however I find each Nurse I see wants to give every 3 months, I always say, my records state 10 weekly!! I know the mention of being better of dead, triggered the gp in to action! If it costs the gp's to administer these injections then pass them to the Pharmacy to do, probably get a better service, also put the injections on your prescription, my old surgery did that!
I do hope you get your gp sorted out soon, for your health sake. Take care
Thank you so much for replying and it sounds like I’m reading your article about myself. It’s dreadful the number of people like you and I have to fight to really what boils down to staying alive. Like you say without B12 we have no quality and I’d started to think what’s the point at one stage when I was so low.I’m going to refuse to go that far back now and I’ve added all the comments and advice from so many people on this forum that I’m going to the practice all guns blazing.
I just think of all the people who are on their own suffering like us and it’s so sad. All the very best x
It's really so sad and discouraging to read what you guys are going through. I'm so sorry!! After 40 years and at 75 years old you have to explain yourself and beg for somebody to help you, it's just reprehensible. It's disrespectful, its demeaning to act like you are a child.
I'm just starting this journey and to find out that 40 years later people are still going through the same garbage. And for people to have to say that they're better off dead before they'll listen, is absolutely true! That's how my doctor found this. I told him I felt like I was dying and that there was no reason to go on like this anymore. He was so concerned he scooted his chair up and leaned forward and we started talking and I told him to please disregard everything he's ever thought about me and to let's start over from scratch and so he did and that's when he found this, but it is been a very long 11 weeks of pure you know what. Really it's been 37 years of h#$%. When I read that you told your doctor you'd be better off dead it brought me to hysterical tears. Why don't they want to help us? Why are they afraid to spend the money now to keep us out of care facilities later, that are a lot more expensive?. It just doesn't make sense! it's been over a hundred years since they found out how to treat this, yet we haven't come anywhere since then. We're still in this dark hole. There's got to be some way to bring light to this. We need to find a famous person who has this so they can be a spokesperson. People listen to famous people. Something has to change. I'm scared that I'm going to end up forgotten in some Care Facility. Mostly I'm worried about who would take care of my animals is something happened to me . Over the last year I've been in bed 60% of the time. What kind of life is that? I'm sorry for hogging this thread. It's just so discouraging to read what you wrote and how bad you are all suffering still! it doesn't give one much hope. I wish we were all in a room so we could hug each other.
Hi EllaNore what a sad read that was,as you rightly say it’s an awful situation we are all in.At one stage I was so worried for my four beautiful rescue cats that I contacted the cat retirement home in Lincolnshire and arranged to retire them there at a cost of £3500,all I had in the world but like you I was so concerned and convinced myself I was on the way out and couldn’t leave my poor husband to cope with it all,we loaded them all into the pens in the car and I sat and sobbed my heart out,16 years I’d had them all and it had come to this,I then decided to fight back and not send away the most precious little fur balls that I’d rescued and promised each of them I’d always take care of them.
I’d had a brain injury in yet another fall and I was a wreck trying to cope with it all.
Whatever happened In that injury gave me a terrible thirst for knowledge again and “ I” discovered I had pernicious anemia not these rotten gps,Me.
I joined the forum got loads of great advice,learned so much,read till my eyes ached and forgot most of it lol because the injury had effected short term memory,but I took control of my illness and learned how to self inject and slowly started on that precious road to recovery.
Don’t give up hope there’s always a “ friend” around here to chat to and you can arrange for the pets to be looked after by contacting the Blue Cross and registering your pets with them.It’s called Pet Peace of Mind you can register up to 4 pets it’s a free service.they usually ask if you could leave a gift in your will.Have a google there’s lots of info online on this service they provide.
I hope this helps you or anyone else in this situation and this is one reason why this forum is a godsend to us all,people genuinely want to help so until the establishment gets the kick up the ass it needs we will all be dependent on this for a time to come.
I am soo so sorry for your brain injury on top of all this. I didn't mean to make anyone sad, I am just so angry at what I am learning. Yet another illness doctors know very little about and should. Gosh I can relate to you so much. That must have been a very devastating time for you to make arrangements like that. I am right there. Thank you so much for all this info. I'm sure it will help many of us. Yes I am from the US but, I have actually been looking into life insurance that I can leave my animals and make arrangements at a place that cost $35,000 per animal for 5 years I think it is, But it is an exorbitant amount. So I was looking into $100K life insurance but it is very expensive. I have 3 dogs 16, 19, and 10. and 4 cats 16, 4, 2, 1. My oldest dog has diabetes and costs me $300 a month to care for. I am alone so there is no one that can take care of them. Even an overnight stay in a hospital would be very bad for my dog. I have a few friends (just moved here a few years ago) but they would not know how to care for a dog that needs injections twice daily and 4 other meds. So, I am very worried.
Yes, this forum has been a life saver. You all have been so great! from how to inject and open an ampoule to this. I spend 99% of my time alone, by choice, because right now, I don't have the energy for friends and they don't get it as much as they want to. This website is my only source of reliable info, from people that know exactly how I feel. Here I don't have to pretend everything is OK. But you all tell me it will be and I believe you.
There’s got to be an animal charity that can take some of this pressure from you it’s so unhealthy for you if I was near I’d be round like a shot lol.Don’t put yourself under financial stress like that either being realistic you probabaly have a good few years so there’s plenty time to investigate how to make provision for them.
I just moved a year ago and although my house is everything I wanted I hate it here.
Use your friends,teach them how to inject the wee dog they’d rob ably be happy to help you so reach out they may surprise you,don’t isolate yourself I do that and it make me very lonely.I think it’s part of our illness to do that so try and make it your mission to beat that.
Take care of yourself and you’ll be around to help your lovely wee gang an awful lot longer,they must be such good company for you you must live on a ranch with that lot lol.x
Well, thank you so much Happypensionerclub. I would do the same for anyone too. They have all been rescued and they depend on me so I can't let them go through the shelter situation. I recently moved to Iowa under duress and used to live on 17 acres near Yosemite National Park in California Sierras. So I miss it very much. I don't live on a farm any more, but my town only has a population of 187 and we are surrounded by corn fields and soybeans. It's quite peaceful. Thank you, I plan on sticking around LOL. I am so glad all worked out for you and your little fur babies too, and that you chose to stick around. Hang in there, Take care.
My Paternal grandmother was one of the first to be injected with B12, monthly dose, after being in hospital eating loads of raw liver. Later my Dad and elder sister were both diagnosed with PA.I was diagnosed by elderly haematologist,when I was 45,now 79 due to family history and symptoms . Since had a battle for treatment, hence DIY. The med profession has gone backwards with this.
Wow, that must have been horrendous for your grandmother. But knowing how we feel I bet you she was happy to do it. It just seems that with that kind of History and that kind of knowledge that more should be being done. There is some kind of red tape bureaucracy going on in the medical world. They know they should be covering this. they know exactly how many injections people need. They know darn well people need more than one injection every month. They are choosing to treat us this way. Question is why? There are many people who can't afford to self-inject and pay for their own medication. So they have to suffer until their next injection . That's unacceptable.
Saying you are unhappy with a persons treatment or attitude is not complaining. Try to think of it differently that you are just asking for care and compassion that you are entitled to as human! I had a health care assistant who always pinched my arm and bruised it when doing my injection so I specifically asked the receptionist to not to have him do my injections anymore and showed her why. Never saw him again at that surgery!
Link above has letter templates covering a variety of situations linked to B12 deficiency.
1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
2) Keep letters as brief, to the point and polite. Harder to ignore a letter in my opinion.
3) When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was received may be useful if there is a need for a formal complaint in the future.
4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised. I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.
5) Letters could contain some of the following
relevant test results
date of diagnosis
relevant family/personal medical history
quotes from UK B12 documents
requests for referrals to relevant specialists
The shorter the letter, the more likely the GP is to read it in my opinion.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Local B12 deficiency guidelines
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
It's also possible to submit a FOI request to GP surgery.
Read the blog post below if you want to know why I urge UK forum members to find out what's in their local guidelines.
Might be worth looking at the section on your CCG or Health Board's website for
values
mission statement etc
as these should say how patients should be treated.
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.
Thanks for all of this, will pick through, and when I can get going with it. I have all but give up with my GP's. Took some time out as was becoming obsessed to the detriment of everything else. Don't know what I would do without you all , just going to carry on carrying on. ❤️🧡💛💚💙💜
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High b12 with injections
Nurse Querying My Need for B12 Injections
