Im diagnosed with Non-dietary Atrophic Gastritis Pernicious Anemia after having a gastric biopsy and Im prescribed b12 injections which are done at my home by district nurses and I have it every 12 weeks (although I need it more often than that like most)
Last year my injection was suddenly stopped during the pandemic and it took my poor husband eight months of arguing back and forth to get it re-instated, which it was and I finally had it in November 2020. My next injection is due tomorrow and my GP not only refuses to all my injection but she also refuses to issue the prescription so I can't even get someone else to do it! She insists that my last blood test results tell her that I have a 'high level' of b12 in my body so I don't need treatment and she'll just check up on me every six months'!!
Im sorry Im in shock!
I was diagnosed by gastric biopsy performed by a consultant gastro-enteroligist and told that there is no cure and if left untreated is deadly! I was prescribed b12 injections for life because I cannot absorb oral b12 tablets. I've suffered from this for many years and haven't had any problems with any other doctor like this. A few years ago all the doctors clinics in my area merged so they are all together in the local hospital and they assign your name to a particular doctor and although you never see the same doctor twice its usually that doctor who signs off on decisions about you unless you're lucky! This particular doctor proves to be very difficult!
Does a GP suddenly have the authority to over-ride the consultants? When were GP's given this type of power? to just decide whether or not your diagnoses are true/real/exist? How can a GP decide whether or not to issue life-saving treatment to someone with a disease diagnosed by someone of higher education ie consultants?
Im horrified to discover that there isn't any accountability? What if I'm diagnosed with Cancer? Can my GP refuse to believe that and refuse to prescribe me Chemo?
Im already suffering from symptoms like most of us do well before the 12th week! Theres no way I can wait six months! Also this is the same GP who last year refused to issue me with a 'Rescue Pack' for my severe stage 4 COPD! She said I don't have it because Im not on their 'list' so my husband had to trawl through all my medical records to find proof of my diagnosis before she would issue me the urgent Rescue Pack that I desperately needed at the time! And the proof he provided to them was sent to us from THEMSELVES! I feel like this doctor has some kind of agenda against me? All my diagnosis's are on my Patient summary which I obtain from ..you guessed it, this GP surgery!
Im really poorly and now Im terrified because without treatment I'm only going to get worse! I just don't know what to do? I wrote a lengthly letter of complaint to the address published on the PAS website but they have literally just ignored me! Hence why I said 'no accountability'
No reply and that was nearly a month ago now! I just don't know what Im going to do?
I feel like I'm being called a 'Liar'! I feel like I'm going mad! I feel like I'm in some kind of parallel universe!
Thanks for reading.
Written by
JulianaB
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I am saddened to hear about what has happened to you, but pleased that you have found us . You have come to the right place . I will just assure you that you will get help,here . We hear of stories like yours all the time. The ignorance of doctors about Pernicious Anaemia is shocking . Many of us have horror stories to tell . Your doctor should know that Pernicious Anaemia is an autoimmune condition that cannot be cured and treatment is FOR LIFE . The fact that blood tests reveal high levels of B12 is of no consequence. If your doctor read the guidelines she would know that you need not be tested for B12 levels , once treatment has started .
Because of being unable to get aB12 injection more often than three- monthly , and my symptoms returning , i have been forced to self- inject , and can keep myself well . Thats something that you might have to consider if you get no help from your GP . Have you thought about changing surgeries?
As you are a member of PAS , you can get help from them . They will approach your surgery on your behalf . But you should try to get the treatment you need from your own GP first , quoting the official guide-lines that are issued for treating Pernicious Anaemia.
If you don’t get anywhere , then self-injections are the way out of this horrifying situation . Cheap, ( about £1.50 , everything included) convenient ,and effortless. We get our B12 ampoules from excellent German online pharmacies . We will give you all the information that you need if that is what you wish. You only need to ask . Best wishes .
I agree totally with what you say. I had to battle on my mums behalf. Hers were stopped at the age of 91 years old.
I write to the senior doctor in the practice. Copied in practice manager. Mp can be copied in. Also local commissioning body. That was difficult as so broken up and passing me on to the next.
I have had my own battles.
Even although sorted I still can arrive for my injection and its refused by a nurses or HCA I've never met.
Poor admin.
Poor record keeping.
Dont read the notes .
Their notes as you say.!!
Bnf guidelines
And so it goes on.
I hope you get an injection in which ever way possible whilst being sorted.
A private one ,a one off one or self inject.
Or just keep pushing if not due yet.
I wish you success .
Follow up letters with a booked telephone call.
Only way I've found as also never got a reply.
Letters are scanned onto your notes but then not put under the doctors nose to actually read.
Admin. Is particularly bad at the moment.
I.T systems not compatable with hospital consultants ect and not 'shared'
Poor admin. again as you just have ti consent to 'sharing ' and a box is ticked!!!
I'm like you in I keeo and am copied into letters.
I arrived at a long awaited neurologist appointment. A while back(well it would be ) they didnt even have my brain mri result!! I handed it to him.
You have to be well to navigate the system.
It's there in the NHS with excellent doctors. It's getting access to the right ones !!
I truly believe since doctors have had to do all their own letters ect theve gone under
Ask any of them .
Consultants with good admin . Much better.
Anyway that's their problem.
Hope yours gets sorted very soon.
Ps .I totally get to how its left you feeling.
A liar
A nuisance
An irritant
Very upset
Having to justify what treatment you need .
Try to rise above it.
You are only wanting the treatment you need.
That what I mean about keeping it as simple as possible. We need to preserve our precious energy . I'm learning to walk away at injustices.
Cant take it all on.
Good morning JulianaB. That’s so shocking to read I’m so sorry.I would advise writing a detailed letter to your practice manager and also contact your consultants secretary and inform them of your experiences and ask your consultant to intervene on your behalf.
You could also purchase the b12 from Germany as most of us have to do and self inject with whatever frequency makes you feel well,if your unsure of doing it ask that wonderful husband you have to do it for you,it really isn’t difficult,once you get that first shot out the way you’ll feel a real sense of achievement and that feeling of not being reliant on these morons anymore is just fabulous.
Yes there may be good doctors out there but I’ve never found one for donkeys years.My private endo professor consultant said to me “your gps are bloody useless” in his poshest voice lol,I said to him that’s why I have to pay people like you.I can feel your frustration with this I think most of us here have been there
It’s not easy to battle when your feeling so poorly but when you have a strong day do your letters and meantime have a serious think about self injecting.you’ll get all the info you need on fbirder posts he has detailed the whole process just click on his name and have a read.
Oh Juliana! This sadly sounds like my battle with my GP. Feels so personal doesn’t it. But Wedgewood is spot on, you’ve come to the right place for help and guidance.
My monthly injections were stopped in December but with the help of the lovely members of this community I now self inject at home.
I can’t tell you how empowering and victorious it makes you feel, to take control and know you’re doing what your body needs.
I wish you well and hope you find the help you need.
Yes. Unfortunately GPs do have the power to do whatever they want.
Phone her up and explain that she need to be treating symptoms, not numbers. Explain that you want your injection every two months, because symptoms return before the three months is up. Have to hand the information below, to quash any arguments she may make.
If thta fails, then it's time to bring out the big guns.
Write to the GP, sending copies to the practice head, the consultant that diagnosed you, your MP, local press, radio and TV.
Explain, in just a few bullet points:
• I was disappointed that our phone call left me in a position where I am not being adequately treated for a serious ailment.
• I was diagnosed, by Dr A Gastro with Pernicious Anaemia, caused by Autoimmune Gastric Atrophy in 20??.
• This is an irreversible condition which, according to the British COmmittee on Standards in Haematology requires lifelong treatment.
• According to NICE, "Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required." So my B12 levels are irrelevant.
• I therefore require my treatment, as described in the BNF (injections every two to three months) be reinstated. As my symptoms return before the three-monthly injections, I want to have the frequency increased to every two months.
• Without adequate treatment I am worried that I may suffer permanent neurological damage, as described by the BCSH.
Thats such good advice . It great that Juliana has a supportive husband , because when you feel really terrible and are on your own , the thought of confronting an aggressive doctor is more than daunting .
Hi,I was diagnosed with PA about 20 years ago with the Schilling test.
About 18 months ago I was told I was "cured" and did not need any not b12. They will keep an eye on my b12. I then joined PAS, got hold of their information and presented it to my GP. He then reinstated my 12 weekly injections. However when I tried to get my injection last March, I was told that they would not give me one until I had a b12 test. This was 515 so I was again told that I did not need an injection. They told me that I will get one when if it falls below the normal readings. I told them that the readings were not needed as they will always be high if I am taking injections. I was not prepared to wait until they get that low. They held their ground, so I told them that I will now self inject. I have not heard from them since. I think it important to tell them that you self inject and I shall try the doctors again after the corona virus is reduced.
It was so easy to self inject, less painful than the nurse and takes little time.
Lots of help from this site.
I got all my needs from Bodfeld in Germany. Using Amazon pay!
They supplied bit b12 Rotexmedica 3 packs of 10x1ml hydroxocobalamin
But you do know that Bodfeld and versandapo are not shipping to UK at the moment ,as the UK is insisting that they sign up to pay VAT since Brexit came into force on January 1st . pharmasana.co.uk ( German online pharmacy with a U.K. site address ) will supply as also amazon.de ( German Amazon ) .
As you are well aware, there is no cure for Pernicious Anaemia; clue would be in the name.This is a shameful way to untreat a patient.
A GP who claims that a patient is cured of an incurable condition needs to do what we have all had to do: research the condition. Those with B12 deficiency have to do it because they are told nothing beyond "see the nurse and book in 6 injections", or because the frequency of B12 injections proves inadequate to control their symptoms, or to find out what tests might help us get answers. A GP may well not know much about PA or B12 deficiency because it is not adequately addressed in training - and may well not want to admit that to a patient - but there are medical guidelines for them to follow (BCSH,NICE) and your GP is not following any of these.
fbirder is right - write, copy others in, ask for reinstated treatment, ask for better treatment, ask for a response.
NICE guidelines for cobalamin deficiency treatment were changed to read "2-3 months" instead of "every 3 months" in 2014 - the reason can only be that every 3 months was reviewed and found to be an inadequate frequency for some people. If your symptoms are returning prior to your next injection, you are constantly deteriorating before treatment. Whatever your blood level might be.
(In normal times, it probably helps to have some highly visible symptoms such as tremors, to make your case for you at the practice. But these aren't normal times, and no-one's looking.)
Please do not let your GP push you into allowing your condition to deteriorate in order to make a point. Your GP is already wrong. Nerve damage can take months, even years to repair and is not always reversible.
Thanks so much each and every one of you for giving me your time and patience and for your kind and helpful replies! I really appreciate you 😊 and I’m sorry but this is gonna be long! 👀My poor husband has spent yet another day trying to sort it out but to no avail. The district nurse rang because she was meant to be coming to do it for me today so she rang to say she had just spoken with said Dr and she is still adamant that she will check up on me in 6 months! She (nurse) also said I’m due another blood test because the one the Dr is going by was last July! 🥺 the nurse empathised with me via husband because I can’t breathe well enough to speak on the phone and I have tinnitus so can’t hear, this is why I feel really guilty for my husband (let’s just call him H from now) because he’s the one having to deal with it all and he’s not medically trained!
So anyway the nurse admitted that she didn’t know much about PA and that obviously what the doctor says goes so I’m left with “check up in 6 months no treatment”! 😳 There’s no way I can wait that long! I’m already battling with my lung disease and I’m scared of having my mental health issues rise again as well as my burning tongue and toes and numb hands and the fact that I’m asleep until gone 4pm every day! I can’t concentrate or think straight! I know you all know because we all have it but it helps to shout about it all sometimes doesn’t it 🤬
I will take all your advice! I’m going to write the complaint letter and I am seriously tempted to contact local media, what do you all think? Has anyone else in the group done it? Could there be a down side to doing that? 🤔 I’ll have to try to think 😂
I must admit that I’m absolutely terrified of injecting myself! 😱 but...you have all inspired me to at least take a look at it so I’m off to explore that avenue 😃
Thanks again 😊 I hope you’re all doing well!
PS: I apologise to anyone who hates emojis on a serious issue, I’m just trying to keep myself calm and light hearted otherwise, I might go mad! 😩
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
Link above has letter templates which people can base own letters on.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, may be worth including a request that GP practice sends written confirmation to letter writer that they have received letter.....letters sometimes get mislaid.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
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.
May be worth drawing your GPs attention to risk of SACD if B12 deficiency is untreated or undertreated.
I've written some very detailed replies with lots of B12 info eg symptoms lists, causes of b12 deficiency, useful books, more B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.
Sleepybunny I didn't know that hospitals got rid of records after a certain amount of time. Does that mean you couldn't prove you saw a consultant and had treatment, or had an operation, or certain tests? Or do GP practices have records of hospital treatment from the past?
I'm chasing up GP records at the moment and finding anomalies and a lack of hospital records could cause issues.
I don't know a lot about medical record keeping Frodo.
I do know that there are some forum members with a prior diagnosis of PA who when they challenged their injections being stopped were told that there was no record of the PA diagnosis in their file.
I have started to include a suggestion in some of my more detailed replies to keep a copy of proof of diagnosis in a safe place. This could be a positive Intrinsic factor Antibody test result, maybe a copy of letter/report from a specialist confirming diagnosis etc.
I wish you good luck with getting hold of GP records. I sometimes suggest to people that they consider getting copies of their whole medical record.
I used to hand in a written request to reception at hospital to have a copy of any report sent to GPs when I saw specialists.
Birth records and maternity records in UK are kept until the mother's youngest child is 25, I think.
Thanks, yes, I've had good access online to my GP records for a few years, but the practice is merging with another where they don't have such good access. For a while I've been copying what I think I may need in future and am glad I've kept copies of consultant letters, otherwise there's often no proof of things. With long term conditions you don't really fit into the system, which is based more on acute problems. I think I'll try and get hospital records if I can.
I always tell everyone to use an orange and inject water into it,it gives you a feel for handling the needles and syringes it’s exactly what I had to do all those months ago.we were all scared at some point but after you get sick of stabbing that orange you’ll say sod this I’m doing it for real today,if you decide you self inject then come back and everyone will guide you on the way they do it ,take control back from these people it’s your life they’re messing with all for the sake of a bloody vitamin that costs them next to nothing,it’s a control issue with them that’s all.Go for it and best of luck xx
My GP said they only have my records for the last ten years! Something about them not getting around to transferring the paper records onto the computer so they won’t be going any further back than that! I’m 53 and have many health problems from birth and my records are humongous! But even so, surely this can’t be right?
I managed to obtain a huge chunk of my records but a lot of it has been redacted! Trying to get the rest has proved impossible as they say they can’t find them! It’s pointless anyway as my husband has shown the GP proof but she keeps saying “things have changed now”! 👀
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