Hello Everyone,I've had b12 injections for over 6 years that I administer subcutaneous. GP Surgery provided both needles and syringes as well as b12 ampoules.
I moved surgeries a couple of months ago and it's been a difficult start despite me consulting and liasing with them before I moved.
My b12 jabs have been stopped. Despite a neurologist writing to them saying I need them and the frequency. It's because the letter is 6yrs old so they say it's no longer valid. GP says I must be seen every year and the neurologist must write a letter every year stating the need and frequency or they wont prescribe. And if my appointment is late my injections will stop until I'm seen! He also insisted by my techniques is checked to make sure I haven't got into bad habits. I'm always careful but I get one can do.
So today I saw the nurse. She said my technique is fine but she is not happy that I'm doing subcutaneous as she says the b12 vials say intravenous and that was the way she was taught. She's email this to the GP I saw. I can see this doesn't bode well.
I have to inject daily because if I don't my feet become numb and my tremors increase. I've tried repeatedly to reduce but it never works. My symptoms come back. I guess I don't recycle it well?
Is their any research showing the effectiveness of subcutaneous versus intramuscular.
Doctors can choose these days if they will or not prescribe even if a nhs consultant recommends.
Before I moved there I spoke to the practise manager and their pharmacist and sent info in. Thr doctors had a meeting and said they would. Until I registered.
Apologies for the long post. Feeling gutted.
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When my new G.p surgery said my neurologist letter was 'out of date' by 2 yrs as the nurse had refused my injections. The senior partner did not stop my b12 injections despite thd nurse wanting them to stop!
He emailed a neurologist I'd never met for advice.
I was incencsed at the time but fortunately this random neurologist sanctioned them covering thd G.ps back .
Saw on my record my b12 regime up fir review recently.
Have they said on what grounds they havd been stopped?
Ad for subcutaneous b12 injections a nurse won't administer them .
As B12 not licenced for use subcutaneously.
German boxes state sc use as well ax IM.
So many things/ drugs are issued off licence though.
The Iron Clinic near / Addenbrooks prescribe sc.
The B12club ? Group of doctors there may have info on sc use?
Have you spoken to the partners?
Have you offered PAS advice fof professional s.
Havd you contacted PAS .
Ard you a member . They hopefully csn help.
I had to go through 6 gps to be heard.
Had to change G.p ad first surgery closed.
No full access to noted now .
Could the person who wrote that letter be contacted by email?? By partner.
Meanwhile perhaps get your own supplies to keep you well and be able to fight your case.
So annoying they went back on their word .
We all seem to have to face this mostly when on more thsn 2-3 monthly.
Thanks Nackapan.I am a member of PA. I'll wait with fingers crossed. .....won't know till Jan. Prescription runs out 28th Dec....hey ho. But I carry some spare just incase these days......just incase seems a good idea! Lol... Seems to be privatisation through the backdoor if u ask me....
Sorry to hear its happened to your daughter too. Guess they're all covered cos Wez says they can at any point stop prescribing anything they're not comfortable even if it's been prescribed already and recommended by a nhs consultant. I see mine back end of March. PM said that's not long to wait.....three months of no daily jabs....dread to think what will happen. Can't get down to alternate days without symptoms kicking back in
The GP I saw was not nice. He was angry as per my previous post. Both thyroid and b12 got the chop. B12 got a reprieve providing subcutaneous technique was checked by nurse. But nurse has stirred it further by saying subcutaneous is against ampoules directions. I give up! They just stress me and upset me.
I'm well despite them not because of them.
Pretty sure there's research around saying subcutaneous is effective. Whether I can prove these specific ampoules can be used in this way is another matter. b12 ampoules are no longer on my repeats but the sharps bins are. 🤣
And if I was in Europe I could buy them over the counter in a chemists!!! I despair.
Deep breathing.....and breath.....
Sometimes doing nothing is the best policy. Lol....
I’d contact that neurologist secretary to see if they can do you a revised letter - tell them about GP but also your numbness returning. They may say GP has to refer - if that’s the case the if you are in a position to get a private appointment……….
Some surgeries the nurses administer it to patients IM so maybe it’s better absorbed & utilised that way.
If it’s a neurological necessity then it needs sorting before nerve damage becomes permanent (an old friend kept telling Gp their feet were numb, it affected his walking, they looked at all other diseases like diabetes, MS but turned out to be a B12 deficiency
Website is
cks.nice.org.uk
Anaemia - B12 and folate deficiency:
Scenario: Management of anaemia - vitamin B12 and folate deficiency
This seems to me to be a crafty way of stopping our injections ! If Drs can override a consultants decision then I can see no point in being refered to them. There have been many reports of late where other's have posted because their B12 injections have been stopped. 😡
Is B12 better intramuscular or subcutaneous?
In conclusion, vitamin B12 deficiency management involves various administration routes, including intramuscular (IM), oral, and subcutaneous methods. IM injections are the standard for rapidly restoring B12 levels, particularly in severe cases and patients with absorption issues.28 Aug 2024
They wouldn't consider stopping a diabetics medication so where is the relivance in stopping our's ? I would be reminding the surgery of the meaning of the word pernicious........
Why is pernicious anemia called pernicious ?.........
Due to a higher risk of stomach cancer, those with pernicious anemia should be checked regularly for this. The first clear description was by Thomas Addison in 1849. The term "pernicious" means "deadly", and this term came into use because, before the availability of treatment, the disease was often fatal.
I would also state that with a diagnosis of PA injections are for life. I would also be asking if I sustain further orlong term nerve damage who I hold responsible. Nice guidlines 2024.........
For people receiving intramuscular vitamin B12 replacement: Do not repeat the initial diagnostic test in people who are having intramuscular vitamin B12 replacement.
If symptoms have got worse or have not sufficiently improved so they are still interfering with their normal daily activities, or they have new symptoms of vitamin B12 deficiency:
Increase the frequency of injections if needed, in line with the summary of product characteristics, and think about alternative diagnoses, and agree a date for reassessment of the person's symptoms. If a person has, or is suspected of having, an irreversible cause of vitamin B12 deficiency: Continue with lifelong intramuscular injections, even if their symptoms have improved or are no longer present. Advise them to come back if symptoms get worse, reappear, or they get new symptoms...........
Jillymo.....am really not sure why I'm registered any more with a GP Surgery as they seem hell bent on making me ill. First thyroid meds stopped despite 4 nhs endocrinologists saying I need it and on them for 20yrs.....now nearly a year without nhs treatment. And no not OK off thyroid meds and they know it so scrimping by on kind donations as am not allowed to actually buy any meds or I will be disqualifeid from any possibility of nhs funding!! Sigh.....
Now b12.....2nd time this year alone despite Consultant neurologist saying I need them. I've improved slowly but surely over the last 6yrs on treatment and the difference is massive......but they dont go on patients presentation anymore do they.....just on blood tests and wretched guidelines as if they're rules......and they're not reading the latest version of those in any case. For my sins I sent a copy to the Practise Manager. ....clearly not well received.
I contacted my neurologist. Apparrantly he delegated to one of his nurses.....heard nothing since. Rang again and got told off by his secretary saying she'll pass message to nurse and no she wont pass message to consultant. They're a typing pool only! That was well over a month ago. Just have to wait for the appointment in just over 3 months.
So seems we have to self treat to keep well these days....so the thing they condemn us for doing ourselves but they can't/won't do!! Beggars the question why we are spending billions on GP Practises....
Is there any research I can quote re subcutaneous b12 jabs being ok...... My understanding is u can do it both ways. That just because it says intramuscular on the pack doesn't mean you can't do subcutaneous. Looking for that evidence.
I did a search but couldn't find anything other than intramuscular injections are absorbed quicker. I'm seriously astounded to hear your thyroid meds have been stopped. Have you questioned as to why or been in touch with Thyroid UK ? I would be spitting fire and going in with guns blazing. Sounds as if your dealing with imbaciles.
I would have told that secretary to get back on her pearch and mind her station. You shouldn't have to wait to be seen all your requesting is an updated letter which you will need every two years. At least you were seen by a competent neuro ( mine was an arogant swine of a man ) who wouldn't even acknoweledge my symptoms ! I had waited a year to see him and in that time more nerve damage had occured.
It's as if they are going through the motions but havn't a clue what the hell they are doing. We should be able to sue the buggers but all patients have is Pals to complain to and the Ombudsman who in my opinoin are currupt and a waste of time.
Bilions are being sent oversea's whilst they watch our NHS crumble. Many consultations are being done by phone these days. How the hell can a consultant examine a patient over the ruddy phone ? My cardiology appt has gone from yearly to two yearly but the condition has worsened, how do they recon that one works ? It is now beyond rediculous and putting patients lives at risk. I had better stop there because it makes me angry and fills me with venom. 🤬 I hope you manage to get something resolved.
Thyroid scenarios gone on for nearly a year. Finally managed to get access to my GP notes. And the GP wrote I me getting private care and private treatment! Neither is true. Under a nhs endo and he has to apply to get funding back for my meds. Apparrantly protocol in my area fundibg/treatment stops whenever tberes a change in doctor/condmsultant, gp practise and you have to stsrt all over again.....a merry go round that may never cease.GP Surgery said they'd do shared care but I feel like I'm walking on egg shells all the time...... MP, Health Secretary you name it I've done it! Truth is no one really cares/ is prepared to act. Always someone else's problem....
B12 added headache - sea saw between yes then no then yes then no. What a farce it all is.
Yes am protesting......taken my whole year over!
Yes have developed GP/nhs burn out......isn't burn out the expression used when all ure resources are exhausted and you collapse. Thats me.
People die from lack of or access to treatment. The realities of treatment on the NHS today..... it's always someone else's problem, not mine OR protocol prohibits OR we have the right to professionally say no to anything we are not comfortable with. AKA not my problem....go away.
For 'Secretary', read 'Dragon At The Gates Of Doom'. The secretary is there to prevent the system [well, what we think might be 'the system'] from working to our advantage.
I thought that..... Merry Christmas to the nurse who yesterday said it was her official duty to report that I am doing SC injections when the box of b12 vials says IM.. Be more than her jobs worth if she didn't report this she said ......she even showed me the email she wrote to the sameGP who wrote Im receiving private thyroid treatment when Im not. I smiled sweetly.......oh the glory of power!! Happy New Year!!
ThankyoU Nackapan. I offered to do intramuscular if that's what they want if I could be shown. She didn't put that in her email to the GP, the one who was horrid to me. So if they say know I will write that I've offered to do intramuscular muscular. It's not necessary Nackapan - the research I read said when b12 is very low intramuscular he's in the system quicker than sc. Research say 99% uptake with sc and 96% uptake with intramuscular. Clinical outcome is the same.
I'll just have to wait for the inevitable letter....... its already been removed from repeats. Sharps bins still on repeats bizarrely.
im sorry about what happened tp your daughter. Absolutely dreadful but nothing surprises me anymore sadly. I dont see the point of GPs tbh.... Xx
I asked this when yet again I informed a nurse practitioner that I didn’t give consent for testing b12 and the reasons why. She was huffy as they usually are but at least she took blood to test for the other tests that the GP had requested. I once had a nurse say that if I didn’t consent to having my b12 tested she couldn’t do the other tests without me making a request to my GP. I was too poorly at that time to argue and it was obvious that she wouldn’t do the other tests which were very important ones so I reluctantly relented. Of course my b12 reading was over 1000 but nothing was said.
Like yourself I had symptoms for years but my b12 had never been tested. I was in a bad way when it was eventually tested and came back at 58. Since that time they seem to request it with almost every blood test I have.
My B12 prescription was stopped recently by the practice pharmacist. When I saw the original prescribing gp I asked if next time it was reviewed, it would not be stopped without the gp discussing it with me. He dictated this directly into his notes. I had taken my husband for backup so not sure whether this would have happened otherwise...
I wonder how many other medications that are delivering clear benefits would be stopped suddenly like this? "Wow, you're getting so much better on this cheap drug with no side effects - now let's space your dose out until you feel just as bad as before! Or let's just stop completely!!" Substitute insulin for B12 and see how that sounds... like criminal malpractice, actually.
Hope you get your prescriptions reinstated very soon. Eod to 3 months is just awful, very glad you have backup supplies 🙏
I tried to get a diagnosis over 8 years ago- was given all the nerve conduction tests, advice sought from a haematologist and then flatly refused even a trial of injections. If your symptoms are mainly neurological you are really up against it.
I really admire the steadfast way many members here try to present their case to their doctor. I just didn’t have the fight in me to do it so went along the SI route and arranged private tests. Since then b12 has only been mentioned once when a routine blood test showed serum levels off the scale at 5000. And I refused to be drawn into discussing it.
In your situation as others advise I would source my own b12 from Europe
Thanks Morning Mist.......its the new normal of the nhs to force you into self treating......then condemn you for doing it! Unfortunately the cost of both conditions will cost me several thousands per year.....not easy to achieve on a pension.. and then the nhs can refuse you because your deemed to have private care!
yes it’s difficult. On the one hand I think to myself it’s none of their business- because they don’t live our lives and experience what we do, and then on the other hand it would be good to have some medical support.
B12 is only licensed for IM use per the BNF in the UK, more a quirk of the licensing arrangements as they are driven by suppliers requesting a license.
Depending on the suspension type there can be concerns over SQ injections but these really apply to oil based rather than water based.
SQ is used in other countries eg Germany.
Unfortunately all my bookmarked comparisons are between IM and non-injection delivery, but I do remember seeing a study that showed SQ is as effective as IM and may in fact result in take up being quicker
Yes saw it. 96% absorption in IM and 99% in sc. Clinical outcome the same. But that was with a different form of b12. With hydrox no studies been done to compare IV versus SC. Surprising really.
from my experience I suggest that you write to the surgery in the following manner
1)
Explain that because your condition is life long, there is no need for repeated tests or letters. the letter from your neurologist is therefore still valid. It is unreasonable and irrational to expect an annual consultation with you neurologist. any decision from a doctor must be rational according to the House of Lords case of Bolitho v City and Hackney Health Authority [1998] AC 232. To require annual letters from a neurologist is clearly irrational in lifelong conditions and very likely unlawful.
Annual blood draws to establish your serum level of B12 is the most that should be done (in my non medical opinion) in such cases as yours.
2)
Explain that you have a clinical need for SC injections of B12. Highlight that without your daily injections, you experience become numbness in your feet and your tremors increase. You have tried repeatedly to reduce the dosage, but it never works. When you do, symptoms come back. include any other signs and symptoms you have not mentioned here. This is clear evidence that you have a clinical need for injections of B12.
3)
Explain that the doctor must follow the evidence, and the evidence is that you have a clinical need for B12 injections. Explain that not to prescribe is irrational and therefore unlawful. Explain that by not following the evidence you have detailed above, the doctor is not complying with Good Medical Practice paragraph 7 e which says that:
a doctor must propose, provide or prescribe effective treatment based on the best available evidence
4)
Explain that the doctor is not working in partnership with you as required by Good Medical Practice paragraph 6 which states:
If you assess, diagnose, or treat patients, you must work in partnership with them to assess their needs and priorities.
and paragraph 7a iii which states:
In providing clinical care you must adequately assess a patient’s condition(s), taking account of their history, including the patient’s views, needs, and values
5)
Explain that you have not reached agreement with your doctor as required in Good practice in proposing, prescribing, providing and managing medicines and devices paragraph 39 which states:
You should reach agreement with the patient on the proposed treatment
explain that for the sake of your health, your clinical need, you must continue with B12 injections.
6)
Explain that to withhold treatment if an appointment is missed is a completely unnecessary punitive measure, and is likely to cause harm. Tell the doctor that missing an appointment is not clinically justified and shows that doctor is abusing their position. This is likely to be unlawful and contrary to Good Medical Practice and shows that the fitness to practice is impaired.
7)
Advise the doctor that all you want is to feel good and be in good health so please reinstate the B12 injections.
Your choice to do this but I would advise the doctor that because of the above, I think that the doctor's fitness to practice is impaired and this may result in a complaint to the General Medical Council.
Thankyou. Really helpful. I've just looked at my nhs app and I now have an option to tick nox for my b12 ampoules. Until my appointment with Beurologist. When theyre stopped until they hear from him in writing. Whether I'll get them we eill see. He's put he's only allowing monthly for my repeats (I was on 2 monthly) because of Christmas so because of that my repeat is due on 1st of Jan. Have to order today to stand any chance of getting them from pharmacy in time. Only just been put on.
It's all game playing. 2 monthly would've meant not due till well after xmas/new year. That would've been helpful! Heaven forbid.
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