At least it has been reinstated for now so lets hope the pharmacy dont cancel it. I am surprised to hear they can cancel a prescribed medication and over rule a Gp !
No it most certainly is not right but who do you complain to who could actually stop this sort of thing from happening again ?
I think it a good idea to ask the Gp to put a note on your prescription and cant think of any reason why to refuse.
Dont talk to me about the modern world I feel as if it has gone ruddy mad. You can spend hours on the phone trying to correct others error's.
It seems the Drs are dowmloading what used to be their job onto the receptionists. I had one tell me a few weeks back I didn't need a follow up cardiollogy appt. I have annual angiograms ! ! ! I thought I was going to blow a fuse I were so angry.
It's like dealing with idiots and there is no excuse for it.
The subtle raise of eyebrows speaks volumes, doesn't it ?
Yes, a good idea to ask GP to add prescription comment - at least she was able to see and treat you as an individual, so no reason she would refuse. Especially since it is her belief that you could be challenged in future.
I remember a nurse saying to me "So you're the one getting monthly injections !"
She can't have been aware then that I'd previously had six months of 2-a-week B12 injections, and was struggling on monthly "maintenance" jabs. Certainly going off-piste for them - so a nuisance if you're unable to last three months.
[Never seen as an inability for injected B12 to be effective for this length of time for some individuals]
"Seems to do her own thing" - You really had no choice there, did you ?
A nurse once looked at her screen, narrowed here eyes at me and said, with obvious deep suspicion: "Did you ask the Doctor to increase your B12 injections - or was this requested by a consultant ?"
ME ? I was barely alive at the time. The suggestion felt very unkind - could she not see me ?
...and how can anyone truly believe that we could have any such influence over GPs , especially someone "in the trade" ?
Doing your own thing seems the safest option available !
I have also found it very frustrating when something is said by a consultant during an appointment, something you cling onto like a life-raft at the time, which then is not mentioned at all in a report back to GP. Last time, I wrote back; " I found it interesting that you have altered your opinion regarding B12 injections, and wondered why you now think ...." It did not get me anywhere, as no reply was sent - but at least I could copy in my GP to my query. Who knows if they ever read them now ? They are still addressed to my GP, one of those that left the practice.
I also recently asked for a copy of my latest set of bloods, which I was told would be sent out with my report - it was, but a minute list that I had to use a magnifying glass to read. Each entry finished with no test result - just "1 or more final results received".
I’m so sorry that you are being messed about. So, much going back and for. Having an illness is one thing, trying to maintain treatment is another. Thank goodness you had a lovely GP who listened and admitted her limited knowledge.
The good thing is you can see the repeat is on via the app ?
Take a snapshot of the screen. If you have a printer at home, print it out. If you don’t have a printer at home, then you can email yourself or someone close to you. (No rush for print out but take an immediate snapshot).
Then you get a lever arch file and you keep a collection of health information in.
First and foremost is you’ve got over the biggest hurdle of re-instating it.
Have a relax because of the silly nonsense you have just been through. We have a chronic illness so will always need treatment. Why on earth they try and stop treatment 🤷♀️
Insanity is doing the same thing over & over again & expecting a different result.
That is so strange???!!! That was exactly the post I was thinking about using when chatting about educated but safe, self administered guinea-piggery 🥳🥳🥳
Really feel for you it's exhausting and yes a lottery. I used to try and stick with the 1 or 2 nurses who were helpful but sometimes when i arrived it had been changed to another nurse i didn't like. I dreaded every appt. It took me back reading that. Hope you manage to get sorted it shouldn't be this difficult to want the bare minimum.
Oh no a new surgery. I'm shocked also the pharmacy admin could do that. The biggest thing I never understand though is why they all treat it like it's some kind of dangerous addictive drug. It's a water soluble vitamin! 🙄 I got screamed at by a nurse once in UK "you DO NOT have 6 weekly it is 3 monthly"Doc in UAE "have one everyday if you like it's good for you"
My mother’s notes stated that she ‘refused’ medication in North Tees Hospital when in actual fact they had administered a drug that she had reacted to (containing ingredients already listed as problematic to her) and spent 3 days vomiting and couldn’t even keep water down. As she had been given Apixiban (blood thinners) in tablets etc instead of injections then not one of her medications was offered or administered in injection form for over 3 days. She was never given a B12 injection or had her B12 levels checked in the entire time since receiving a PA diagnosis in a number of years before her untimely and completely avoidable death in 2018 even though she repeatedly told them she felt anaemic. The damage was done and she removed herself from their ‘care’ telling them as a reason that she did not feel safe on that ward-a very abreviated account as the full story is pretty bad and multifaceted I’m afraid and this withholding of B12 was pre-pandemic and perpetrated by the NHS Trust involved!!! My mum spent her working life in NHS as a senior staff nurse and worked uncountable hours overtime with no recompense in the care of her patients but when she needed that care she was met with snot-nosed imbeciles with more care for lashes, nails and Kardashians. The type that don’t suffer with stress and eagerly go to work to ‘wear’ the uniform and keep up with the gossip! My question is are these people going into NHS because no one else will employ them? Who on earth is recruiting and training these imbeciles and were they created by society or were they born that way? I pose these questions in astounded humour as I find it mind-blowingly difficult for my mind to accept what my eyes saw and my mum experienced. So unfortunately I am neither shocked nor surprised at the fight you are having but worry that this situation is going to worsen as there is no money to be made from healthy people. Cynical yes and I sincerely hope to be proven wrong. My very best wishes in your battle 💪🥰🥰
So sorry your mum got treated so badly after working so hard herself caring for others. Nursing seems to have got too academic and basic kindness and good care erratic.
So sorry you are going through this. Stress is one of the worst things to have to deal with when you have PA, it zap's your B12. Like you I changed surgeries, had to leave my old one of 25 years when their lack of knowledge of PA caused me to become really scared. I have neurological problems and though I started to get better, surgery decided it wasn't a B12 problem and to stop the twice a week jabs and get me back to 2 monthly. A message to a neurologist ( who studied sleep and epilepsy)asking for advice about treatment, his answer was that my B12 was flooded so no need to up doses, so he had no knowledge either. I got worse quickly. I left the surgery after making a complaint to the surgery manager and also to NHS complaints. I started a new surgery on September 1st. I explained all to the new Gp who admitted he knew nothing about PA. I gave him a shortened copy of the NICE draft, leaflets from PAS, also the B12 Institute which he said he hadn't had time to look at,(too much info eh!)but recited the part I had highlighted from the NICE draft, the important one he said. I left them for him a few days before my appointment. I was doing the PA survey at the time or would have been self injecting . All that kept me going was this forum and you wonderful people. As soon as the survey was completed I did my first sc B12, within the hour , oh I am so happy. Totally painless and I can feel it working already., thank you Wedgewood and Jade-s, thanks to all of you who helped when I last posted. The new Gp still hasn't decided how much B12 I should have......I don't understand this. Why does he have to decide, NICE write it clearly enough. He wrote to a gastroenterologist who wrote back that he had "no experience of this, nor can I explain it physiologically. I am not aware of any evidence. Equally it is unlikely she will overdose in B12 causing any harm if she has more frequent injections" So offhand it is terrifying. Once I knew the reply from Gastro was on my notes I asked for a copy and put it in my file.Is there anything you can get a copy of Nackapan?
Today I have an appointment with the surgery Pharmacist😱 Now I have read your message I am worried. I will get my battle gear ready though and go armed with my trusty file and hand pick my leaflets. ( I say that but will limp on my pins and needles legs breathlessly and probably forget the main issues I need to ask or say ) I have learned much from this site and you clever people. I feel much stronger mentally and physically I will get there, bit different from my last post and all thanks to you. So sorry Nackapan, wish I had wise words to help you but you have all my sympathy
Hello Nackapan, maybe you can help me decide? SC or IM? Which is most effective for you? I was told that SC can last longer as it gets held back from the blood a while by the fat layer and so percolates in and gets peed out more slowly. Do you notice any difference? I’m not so needle shy these days ha ha 😂
Hi Purpleabc, Well done for maintaining such a positive and pro active mindset after all you've been through ! Your words ARE wise ! Everyone's stories and experiences are such a help to us all here.
Thanks and best wishes to you and all on this forum xx
I had the same problem with a pharmacists in the US. I had my doctor cut a new prescription to a different pharmacy rather than transfer to avoid having that pharmacist say anything to the new pharmacy. It was wild. That pharmacist was on a power play. I gave him hell before I left. Grilled him with questions and handed him his ... by showing him he knew nothing about b12. He started lying about medical reference I formation.
The when I asked him to show me, as it didn't exist, he asked why I was making this so hard. I said my life and career are at stake because my cells have stopped regenerating due to lack of b12, wouldn't you do the same in my shoes?
I don't recommend being argumentative like that, as it really won't change their mind; just switch to a different pharmacist.
That experience is why I just ordered my own supplies.
Glad you got it reinstated. And this is why it's good to be armed with documentation and facts.
The problem is though for me, I started using my bra as a handbag when my shoulders were hurting from being my family’s pack mule-it was so heavy that if I was mugged even I would be fast enough to catch the thief- now I just tell everyone that stares when I pull my purse or keys out of my very ample bussom that I’m only a AA cup really! Usually gets a good laugh? Seriously though-how many books, documents, leaflets, reference lists is this going to take to make this information mainstream? We are supposed to be dealing with learned professionals aren’t we? Maybe we should organise public rallies-oh I forgot (probably my B12 deficiency) most of us are unable to walk very far ( probably our B12 deficiency ) and can’t stand up for long lengths of time (probably your B12 deficiency) oh and there was some other things but I’ve forgotten???!!! Could be my B12 deficiency? Maybe we should just feign dementia and go into GPs reception again and again and ask them over and over until they give in out of exasperation ha ha 😂
Nackapan, if I thought it would help you or any other PA pal, I would gladly stand in line at your doctors or pharmacists and harass them into doing their jobs properly 🙏😵💫
My brother was SI 4x 1.5 EOD for a few weeks before reducing dose and frequency but having felt much better he overdid it and ended up ill again. So to me your doses aren’t that frequent. I too used to get migraines and had to spend at least 1 day per month in bed in silence and darkness. I too had a bad fall getting out of the bath and broke ribs. I also broke both my little toes within a couple of days of one another in 2009 slipping on the stairs. I think my ‘menier’s’ was probably neurological for which I too was given amytriptylene at that time but as a muscle relaxant? I couldn’t drive with it so thankfully didn’t take it! I think my allergies were amplified by the lack of B12 modulating my homocysteine levels. I think that I was in danger of being paralysed as I could barely walk for about 5yrs and went through years of extreme pain. I had lashings of Entonox giving birth x3 ( for which I am eternally grateful) though wish I had known of it’s full effects as I am hardcore enough to have done without and certainly would have dosed my youngest daughter sooner with b12 particularly after her breaking the same ankle twice and being given Entonox in order to remove her footwear. I still completely lose bladder control the week before my periods and can’t see straight nor find the right word for everyday things getting upset and frustrated and panicking that I’m getting early onset dementia at 55 etc-oh and I too have a snazzy shopping trolley to take the weight when not so long ago I used to go to the coal yard and lug my own 10 x 25kg bags for myself and then go back 1/2hr later and do the same again for my parents every Saturday October-March (being built like a rugby player). Sooooo when someone suggests depression I laugh maniacally to myself whilst maintaining my resting bitch face and can only wonder why people quake with a single look from me-I must come across as a very formidable character but in actual fact-I am! 😂😂😂 Don’t ever give up as you will get well again as I recognise that you too are formidable and capable of getting through this so by whatever means you need to get your treatments then you do it my lovely and if there is anything I can help with I will!! 🥰
Hi, It's awful what you and everyone here has to endure ! As a former nurse , I'm so sorry about the way your Mum was treated and I'm embarrassed and furious at what has become of my profession !
Well done, despite everything, for maintaining your sense of humour and for your positive message to Nackapan and all of us here.
Don’t you dare bear any responsibility for the action of others-we all make enough errors in life and with B12 deficiency, feel like we are already carrying more ‘weight’ than we can cope with. There are still many decent people out there but isn’t it the old saying that sh’t floats ha ha the idiots are just more memorable than the decent, industrious souls 🥴😂😂😂
Hi Nackapan, That's shocking, it can't be right ! I'm so sorry you're having to contend with all this, you've already gone through enough as it is ! I hope this gets resolved very soonWishing you all the very best xx
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B12 advice for a friend 
Update on blood test - sorry long post
I must be going mad!
NHS is infuriating.
