Hello Nackapan, how awful, its really beyond belief that this is happening again, so soon. It is irrational and stupid ! You are understandably so stressed and upset, love and hugs to you. x.
So upsetting to read this is happening to you again. And never apologise for needing to vent - that’s what we are here for to listen and share experiences- good and bad.
I am glad you have squirrelled some B12 away so you can continue. I hope your letters sort things out for you. What does DNA mean? Did not attend? Do not antagonise? Do not approach?
I am in the process of getting access to my medical notes. Be interesting to see what I find!
Best of luck getting your prescription reinstated. 🤞🤞🤞Lots of hugs .
Well, glad you have still retained your sense of humour. And still able to write a strong but polite letter - it would probably be around the fourth draft before I'd eliminated all the swear-words !
Under GDPR (2018) this data has not been obtained and stored correctly. This is why Nackapan has to involve the Data Protection Officer. It is misinformation. It is their responsibility to remove it.
I had my GP injections stopped too. Naturally, to me anyhow, I thought my next appointment was void. Got messages saying how much appointments cost and how important it was to inform health centre if I could not attend. I rang to explain that all health centre injections were cancelled so it was the Dr who should've had this on my notes. I requested this DNA be removed from my notes. But, hey ho, it is not the Drs responsibility to cancel my appointments. Double standards???
....and best of luck getting your notes. Mine were almost totally false and am not getting anywhere resolving the many errors and omissions. Anyone ever heard of a man being prescribed female hormonal contraceptives? Dates 20 years off? Why is there no record of me before 1989 when I was born in 1945? What I really need is a copy of the old paper notes but no-one can - or will - tell me where they are.
I'd like to know that too! I've changed cities and continents since I was born in '61, yet all I can read online from current surgery is from around 2021. I've been on their books since 2014.
I was, too. New (junior) doctor just shrugged his shoulders and slouched back in his luxurious armchair and gazed at his computer. Then asked me to stop self-injecting. I asked for my paper notes, got told he didn't know about them, "everything's on the computer". Waste of time arguing but I'm amassing all the evidence I can.
What a load of incompetent imbaciles we have to deal with, who the hell do these admins think they are ? Obviosly some jumped up little jobs worth who is above thier station. 🤬
One of the nurses who gives me my prescribed 2 monthly B12 wrote my Gp asking for my bloods to be checked ! I soon put her in her place and pointed her to the guide lines.
I know you will sort it out but it must get monotonous having to do so.
Sorry Jillymo but how do you know the admin was female? “Above her station”!! Really ! There are many male admins in the workforce now yet still ‘we’ blame women. This is women are not taken seriously as both sexes seem to automatically assume any mistake or bad thing is obviously down to women.
How strange, my prescription is on a repeat basis, and I just ring up for mine whenever I need mine, and when I see the nurse I the automatically get booked in for my next appointment for my follow-up appointment every 3 months, is someone deliberately taking your prescription of the system, or was it purely accidental, you can't be doing with chasing up these errors or mistakes, my doctor get concerned if you go beyond the 2 weeks past your due date on your injection date, so obviously some people don't realise how important these B12 injections are, and I think if you go beyond your due date I have to see your doctor anyway, I know myself how important these injections are I start feeling the lack of B12 affects me immediately, my muscles start twitching, the chest thumping sensation, and eyes start flickering, the lack of knowledge and the danger that is involved is damaging peoples health.
"my doctor get concerned if you go beyond the 2 weeks past your due date on your injection date"
I think muscle twitching and eyelid flickering are both neurological symptoms.
In the UK, patients with b12 deficiency with neurological symptoms would usually be on treatment pattern "for those with neurological impairment" in link below.
How often are you injecting? I read your bio and if things are still as bad as you said in it then it might make sense to still be on every other day. I am so sorry to hear the doctors are being so horrible. B12 is sold over the counter in BC (Canada) so I don't have to worry about prescriptions. People on this forum see to manage to get some from Germany when the health care system is not cooperating. Very best wishes for full health!
I was often told there were no appointments for two even three weeks after the due time. Receptionists have said 'but it isn't urgent so that'll be OK' !!!And I could not ring up earlier for my injection app because then I'm told that appointments for two weeks in advance are 'not out yet'.
Your comment, though, has given me heart that some doctors and nurses out there do understand and treat B12d patients properly.
Yes my appointment is always done straight away with the nurse as soon as I've had my injection, and if for some reason I miss the appointment or I have to cancel the appointment and it's runs beyond the 2 week period you have to go and see the doctor, obviously my doctor's are aware these injections are vital, perhaps certain medical practices aren't so clued up, and maybe they don't understand the long term damage that B12 deficiency causes, I'm literally running on fumes by the time I need my injection 🤣 I know I need these injections, pity some of these so called health experts don't suffer with the same symptoms then they'd understand our problems 😢
‘A low serum triggered treatment for very severe symptoms. Self-inject at home to save nurse’s time. Two neurologists and MRI.’
My case was very similar,
A low serum triggered treatment for very severe symptoms, urgent admission to a neurology ward, CT of brain. 5 neurologists and 2 medical students. I can’t forget them.
My sister would ring me crying in her 4th year of med school, then the first year of being qualified. She still gets upset because of the type of work she undertakes. She works with neonates and some can be very poorly indeed.
You bang that drum, last week I bought a fog horn that is no joke.
Good.I'm onto a new surgery as my old surgery closed.
I had a good rappoor in the end with one G.p in the old one.
Who had seen me from the start .
In the end saw for herself it was
'only B12 ' that gave me slow progress.
The only Gp I saw was fine and reinstated the prescription that eas removed. First one I've seen in nearly 3 years. New surgery . Only seen because of this incident.
I think this is a pharmacy admin problem as I'm prescribed 2 weekly not 2-3 monthly.
So it's highlighted .
I want to 'stay in the system '
For the above reasons and it to be transparent my need for regular b12 injections on my notes for the future as well.
I also get concerns as not OTC here and brexit making it more difficult.
That worries most of us.
I'm tenacious and not just fighting for me but 'The cause '
It makes it go on agendas.
If I can sort out injustices of any kind I feel alot happier
I’m sorry this is happening to you again Nackapan. So many things to do with B12 deficiency seem to have a lottery type of arrangement attached to them. It is unfair for those already suffering to be caused such stress. I hope you manage to get it sorted out without you becoming totally distressed. Good luck with it all and I hope you have the good fortune to have someone actually listen to you. There is so much lip service given by health professionals, it’s scary. I’m going for major neurosurgery Thursday the 2nd of November and I’m frankly scared.
Whilst neurosurgical care should be excellent in hospital, B12 deficiency treatment cannot be relied upon in other hospitals. I recently spent a month in the largest hospital in London which is in Harrow. Several junior doctors had been told that B12 is toxic (no evidence) and a Consultant told me that B12 could cause nausea and stomach/abdominal pain. When my husband asked for a reference, it was not forthcoming. He told them that he could only assume that they were referring to some liver cancer patients, whose serum B12 levels increase to very high levels. This is believed to be due to the breakdown of hepatic cells and the release of B12 stored within them. He politely suggested that the symptoms were due to the liver cancer NOT the high B12 serum level. He also takes every opportunity to advise the ward pharmacists about the lack of B12 toxicity and the potential for neurological damage if B12 injections are not given. However, short of offering to go in and give them a lecture, it is an uphill struggle for every inpatient stay.
On another ward, the doctors proudly put in the notes that they had stopped my B12 injections without any discussion or explanation. They had never given me any and since I get paraesthesia effects after about 4 days without, I proudly reinstated my self injections.
I keep my GPs informed since they need to know that some but not all B12 deficient patients start to suffer from symptoms before 2 months are up. They also need to know when B12 injections are successful in alleviating symptoms. The GP journal 'Pulse' sometimes includes the most horrendous sarcastic comments from the odd GP who obviously fail to even acknowledge that injections can alleviate symptoms at all.
I do hope that your struggles at the new GP practice are resolved successfully.
What is the practice manager saying? I get so upset with these things and would be crying and screaming down the phone. You have more patience than me Nackpan x
Hi Nackapan, that's so stressful for you. Have you tried PALS? They can sometimes be useful. Also we have an independent Healthwatch in my area; they are really good. Do you have the same?
I have in thd past for others and once for an a and E experience . The latter not s complaint bug thought for their help about discovering all my symptoms were los b1e related. They were worried enough to give me s brain CT scan whe in.
My reply was appalling . Badly written and quoted b12 not considered I A and E ( my words .
Sorry to hear you've been through this again Nackapan . I can see from your reply you've managed to sort this, but how ridiculous that something can be cancelled at the push of a button by a pharmacist! And as for the incorrect records! How many less diligent patients is this happening to too?! Good on you for sticking at this, but I do hope this is the last time for you.
So sorry Nackapan you are going through this again. Changing surgeries is a nightmare. I changed too and the new one is still deciding on my B12 schedule , leaving me with none from a nurse since August, I had neurological symptoms. Thank god for the forum and wise advise. I am getting better doing it myself every day or EOD, but I still need it on my record ! I eventually got a call from my new Gp who said they had had a practice meeting and the practice pharmacist had done research , he told them that too much B12 can cause pins and needles ...........he had apparently read many papers. Oh, what can you say, I have tried begging, ranting, copying everything I could find, highlighting what was most important for them and me. I am losing my fight. Now I wait to see how many B12's I will be allowed. He said probably every 2 or 3 months but I jumped in with it is 2 monthly for PA. I did tell him that he had to understand everyone was different and though I managed on 2 monthly in earlier years I couldn't now and was self injecting. He thanked me for my honesty . I tried the fact I knew it was a burden on the surgery and I could DIY . Why on earth do we have to go through this. NICE , the new draft will hopefully make it a bit easier for us but even though I gave the it to him ( unread I think!) he said something about BNF, but aren't they mostly the same info?
Good luck Nackapan, my heart goes out to you, the stress doesn't go well with B12, gobbles it up I feel.
Interesting, I would ask the pharmacist for the references of the research papers. Everything less than 5 years is for the shredder unless it is ‘classic’ literature.
Good luck. Well done on being honest. Candour works both ways and trust in the clinician-patient relationship is a must.
The research papers have to be 5 years or less. Unless you are reading something like human beings have 23 pairs of chromosomes which was written in 1066 (it was not but this is an example). It is a fact and has been replicated so many times that the references would so long, it would waste valuable time.
The BNF (British National Formulary aka "The Doctor's Bible") is quoted by BCSH (British Committee for Standards in Haematology) Guidelines :
" The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternative days until there is no further improvement."
It seems quite clear.
Yes, it does then go on to talk about reviewing after three weeks - but who ever heard of nerve damage repairing completely within that time frame ? Let's hope that the new NICE guidelines make it absolutely clear that the aim here would be to get as much nerve damage repaired as is possible, however long this takes. I would assume that a realistic timeline for nerve repair would depend on the extent, severity and longevity of the nerve damage as presented by the patient. Perhaps better determined by a neurologist on an individual basis.
Oh geez Nackapan, if it's not hard enough to deal with our condition, now some admin decides they know better than everyone. I am befuddled how an admin has the authority to do that.
Hmmmm what's that word you British use? well'ard? you need to do well'ard on that admin! Or maybe the whole NHS. Maybe mix some well'ard with some good Yank rebel tendencies! 🤣. I do hope I did not butcher the meaning too much. 🙏
😂🤣 Well’ard was the name of a dog 🐕🦺 in a particular British soap opera. He lived in the Queen Victoria pub. Now, during her reign there was industrial, political, scientific, and military change within the U.K. and expansion of the British Empire.
Poor Nackapan’s prescription has been cancelled by someone in authority. Shame Victoria isn’t around now to sort it out. 😉
I'm so sorry, Nackapan. I have a question though, I'm only asking because nobody's ever questions my injections here in the US. Probably because they know nothing about this. Nowhere in my medical records does it say how often I'm supposed to have an injection from my doc, nor does it say how many times I inject myself because I've told all my doctors that I inject everyday, but it's not in my records anywhere.
I have no prescription for B12 on my records. I'm not sure why. It just says B12 injections but it doesn't say how often. Either they assume I do it monthly and the ones that know that I do it daily never question it anymore. I have not gotten any maintenance injections by my doctor. They gave me my loading doses which weren't even the correct dosage, and after that I just started injecting myself and I've never gone back to the doctor for their injection. I'm wondering what happens if you don't have a prescription in the UK? What happens medically. Since you self-inject, what will that do to you not having that prescription. Will they deny you medical care? It seems to be very important to everybody in the UK to have these prescriptions and I'm just curious as to why. Doesn't everyone ignore that prescription anyway? If they only knew how many of us ignore them. Sorry if that is a silly question.
Oh okay. Lately I felt pretty stupid about the questions I've been asking. My brain isn't working these days and I feel like I ask really stupid questions.
No question is ever stupid, this is because of cultural and regional differences. On Friday, I asked 3 men, Is it ok for men to shake hands with women ?
The answer was, Here, yes. At home, no.
You guys in the USA, have Private Insurance Healthcare, Government Insurance Healthcare, Self-Pay Healthcare, Original Medicare and Medicare Advantage.
In the U.K. we have just NHS and private.
Me, I informed my GP/PCP that I self inject, I stated the variability of frequency (but without figures) in writing and that I import from Germany.
What can they do about it ? Big fat nothing. I told the nurse, this is the last time you will see me. Somebody else who is sicker needs the appointment.
Lots of friends and family work for the good old NHS. They are working ridiculously long hours without breaks. My brother in law walked 11 miles in one shift. Once on his commute to work on a bicycle he skidded on ice. He took himself to the ED department, he had broken his arm. He could not pass endoscopes so, he worked from home. We do not just undertake clinical work, we have to type up reports, attend study days, seminars, do drills of all the types of emergency situations, attend multidisciplinary meetings, read and write research and present our findings. We educate, we mentor students, we support, develop and assess them, we pass on our skills. We also look up blood results, make referrals to other health professionals and write staff rotas. We have to liaise with social services, the police and if the person has a particular faith, we ring and talk with them because there are times when people do not make it. We continually learn and we have to prove that we our worthy of our qualifications and registration every few years.
We do this by giving an assessor a big portfolio of evidence. Our achievements and a card or letter from a grateful person who we have cared for.
We know our strengths, our weaknesses and the opportunities that we have had available to us. We know what may hamper us or may be problematic to our practice otherwise known as threats. We write it as part of a ‘contract’. It is that honesty/integrity that we identify to say, I am sorry I do not know but I will try and find out.
I cried for a whole day when I learnt of Pernicious Anaemia/B12D and I know who I possibly let down. I have years of diaries. It is a legal requirement. Every mummy I cared for and baby I brought into the world.
Nackapan is having dreadful problems with their data. I feel it is time to sit down and talk with doctors, they are not the enemy. They went into the profession to help, treat and care. They are human, get tired and are lovely people. Some of them are party animals. 😂
Gosh I really had no idea. I'm really sorry that your medical system is set up this way. I hope I didn't offend anybody by asking. I was just curious because I hear you guys talk about it so much and it seems to be a very serious issue to not have your prescription for B12. Here in the United States I don't think they even care or even know enough to care. No doctor that I go to knows much about this. And what they do know is very minimal and very textbook.It sounds like you have a very frustrating job and I'm really sorry. I'm sure that it is a very thankless position. I hope that the patients that you help appreciate it. I'm sure a lot of doctor's hands are tied. I did ask my doctor once why am I only getting one injection a month? Is it because of insurance? And nobody would answer my question. That's when I started buying my B12 from Germany and just taking care of myself. So if you don't have a prescription what happens to your medical insurance? And if they do take away your prescription do they have to know that you self-inject and get it from Germany? It sounds like a really terrible position to be in. I'm really sorry for you guys.
Because of my disability I'm on Medicaid. And I just received a letter that said at the end of my life they will take everything I have of assets any inheritance my house anything. To pay for all these doctor bills. They even asked me if I had a burial plot. Do they plan on not burying me and taking my plot away? I don't have a burial plot I'm going to be cremated, but still they want my burial plot? Medical insurance isn't free anyway you look at it they'll get you in life or in death. I know that my doctor's hands are tied because of insurance policies and limitations.
Thanks for telling me all that. It sounds like a really difficult situation.
How did you get a prescription for that? And where are you finding methyl in the US that you can afford? It's so expensive here. And I don't have a prescription. Gosh it sure seems to be different depending on where you live. I'm glad you found a doctor her respected you enough to give you a prescription. I do not have one. I'm still struggling with trying to find the right treatment and the right B12 and finding a source that gets it to me in a decent amount of time. So that I don't run out. I've been waiting for this methyl for over a month now It finally got here yesterday but the post office is closed. Now I have to figure out how to get the saline so I can use it. It's just a struggle to try to save my own life. Constantly everyday. Why do we have to worry about getting B12 when diabetics get sent home with insulin that they could OD on very easily. Why can't we have B12 like they have insulin It's much safer than insulin. I just don't get this. Why are we all suffering like this? Why are they making this so hard? Fighting to get B12 for ourselves on top of having to live with this is just ridiculous.
It is only very recently I am starting to understand the USA Healthcare system. No offence taken.
I am now non-clinical, so I work when I can.
Most of us do not have medical insurance. People are reliant on the NHS here. Although, if any clinician gets sick or their family then we usually ring or text each other asking, Are you in work ? Or is your husband ? Your aunt ? We look after each other or we go private.
The NHS have always been amazing at emergencies. Even my biological father said so, that was 50 years ago. He was a GP studying anaesthetics. Often somebody would knock the door and off he went, to help someone in the village. Some poor farmer had his hand trapped in a machine. The NHS are rubbish at chronic illnesses like autoimmune diseases because we are too busy ‘fire fighting.’
Well, maybe, have a think about donating your body to medical science. My other brother in law is a biomedical scientist. He meets the families and looks after people. Then teaches medical students anatomy and physiology. Here, because a person has thought of this. The university then pays for the person’s funeral and the students often attend.
I think that people are afraid to tell doctors that they self-inject because of the doctors’ responses of it being ‘addictive, toxic or whatever other misconceptions and fallacies.’ The P.A. Society are working very hard with other organisations in several countries to educate.
The other problem is both clinicians and patients not understanding the concept of a record. That’s what I am trying to help Nackapan with. However, I won’t go into that because I know far too much for my own good. Computer programmers are real Geeks or Nerds.
‘Oh yes, it had a high impedance air-gap.’
Sounds cool doesn’t it ? It means, I forgot to plug it in. 😂🤣
Thanks narwhal 10, yeah that's why I was asking cuz I don't understand the NHS. I don't even understand the US's medical system. It's forever changing and it's so complicated and confusing. And it's driven by greed and profit. Not by caring for others. I do feel completely alone like I have nowhere to turn medically. No doctor or specialist that I can have a conversation with about what this is doing to my body. They're all under the assumption that you only need one injection a month. I find it really hard to believe that there's not one single doctor out there in the US or in the UK that has been touched by this personally by a family member a spouse a child whatever, to where they know that they need to give more B12 than just once a month. I don't understand why we just can't have our B12. I'm so grateful for this forum for telling me about helping myself. Because I think I would be in pretty bad shape if it wasn't for you guys helping me. I would have never known about self-injecting. But I knew something was very wrong with me and I needed more than one injection a month. so I googled and I found this place and it has saved my life.
So what does happen when one doesn't have a prescription even though you're self injecting? What does this actually mean for for someone? Will they stop treating them or seeing them for this?
‘I find it really hard to believe that there's not one single doctor out there in the US or in the UK that has been touched by this personally by a family member a spouse a child.’
There is CluB12 and a huge amount is going on behind the scenes. People are working tirelessly.
Thanks Narwhal10 That is wonderful. 😀The UK does so much for PA. How very sad for that woman, Georgina Owens, that her vegan diet caused her mental state to decline so much that she took her life. For some people b12 deficiency is hereditary, and then they also choose to be vegan/veg which compounds issues. Not saying she was but she was supplementing although not consistently and still feeling pretty bad it seems. This really does mess with your head. It mentions blockbuster B12. I googled that but didn't really find what it was as it wants to bring up blockbuster video LOL. Do you know what that is referring to? Is that a name brand?
I’m afraid I do not know what blockbuster B12 means. It shows how P.A./B12 is life saving and poor Nackapan has to go to such lengths to have it reinstated.
It is terrible. 😞Especially after years of having it. How many others does this happen to everyday? They know it never goes away. I don't get it. Very sorry for Nackapan.
Well, this is why the PA Society is so important. Membership means data collection. Age of diagnosis, length to diagnosis, frequency of injections, when treatment is stopped etc.
I get mine from Germany as well. Everybody here steered me there and thank goodness they did because I would be on one injection a month as well. But I don't even tell my doctors anything anymore. I just inject myself. I let them know at the beginning that I self-injected. The were agast!!! They thought I was going to kill myself and OD on B12 everybody freaked out. But I think my doctors can see now why I needed it everyday. They don't speak of it. I don't speak of it anymore. It's not on my record how many injections I get. I was worried that it would skew there impression of me or make them not want to treat me anymore. Or deny me medical care because of it. That's what I was wondering was happening to you. Will they deny you medical care if they know you self-inject because you don't have a prescription anymore? So I was just wondering why does anybody have to tell their doctor what they're doing? And if they take your prescription away and you do buy your stuff from Germany and you bypass your doctors isn't that okay? B12 is only by prescription here in the US too. I would still be on one injection a month if it wasn't for this forum. I think I would still be crawling on the ground. And for sure my cognition would be really bad. I would only be on my 23rd shot right now if it was once a month. But because I do it everyday, I've had one or more injections everyday for the last 23 months. I would have been in bad shape if I just went with my prescription. Nobody even mentions my prescription and if they did take my prescription away I would just continue what I'm doing and there would be no fallout from it. You guys seem pretty scared that there's some kind of fallout from you self-injecting. I was just curious. I feel real bad for you guys. It just seems very unfair. Two years now I've been reading about you guys suffering like this. So I just didn't understand why a prescription is so important if you are treating yourself anyway. I hope I didn't offend anybody by asking that question.
Hi, I'm so sorry to hear this, it's ridiculous !!! It's not fair that you have to keep fighting, we don't have the energy for continual strife ! But fight we must, so I wish you all the very best in sorting this out. Take care xx
I understand you want to stay in the system. But at what cost? The stress you get seems to me to outweigh any benefits. Stress is the silent killer. I make it a priority to avoid stress.
We really do need to keep fighting for future sufferers. I want to address whoever makes these rules and ask them why they send people home to Si insulin but not B12? I just want an answer to that. Who IS pulling this B12 string? Who made up these rules? Where do we go to fight them? Someone said this is the way it is and that is that? who was that? and why don't they do what Australia does or Switzerland or Canada or Germany?? It is infuriating! If someone who did not have a b12d or PA wanted to take B12 tablets or injections at a health spa, there is no one to mandate that or monitor it. No one to tell them they can't do that or tell them how much. A spa is allowed to give a customer 59 injections in a 90 day period in the US. I called and asked. that is quite a bit compared to once a month for us. Hollywood people get B12 injections at spas everyday for hundreds a jab. So why are they doing this to us?? Anyway, I am so sorry this is happening to you.
I have a few errors on my surgery records. It is frightening what they get wrong! My height has been incorrectly entered as 75cm instead of 175cm so I have been red flagged as massively clinically obese at my correct weight of 80 kgs. Quite funny really! Who knows what else they get wrong?
I am not familiar with what DNA means. I am in the US. I can read my clinical notes on-line after a doctor’s visit and I can always detect the “undertone or insinuation of “non-compliant” or “hypochondriac who googles too much.” These labels and/or assumptions by healthcare people are so de-moralizing. I always want to say to them, “what is the up-side of constantly going to doctors and/or having to work so hard at just trying to stay alive?”
It consumes our life. I often say “I am too sick to be sick. “
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