I had a scheduled call with a GP at my surgery today, to discuss why my regular (since 2017) B12 prescription had been stopped. My medical notes state that I have Pariatial cell antibodies and there are numerous letters on file from a private neurologist stating that I need 3 injections per week, I self inject and buy my own needles and syringes.
I am shocked with the nonsense that the GP came out with:
1. B12 is dangerous, you can overdose and have nasty symptoms such as headache and nausea. My symptoms of undermedication are on record as slurred speech, falling over, brain fog so severe that I have stepped out in front of traffic – give me headaches and nausea over that any day! However, despite “overdosing” I do not suffer with headaches or nausea.
2. The NHS are not happy with my 3 shots per week as it is not standard practice.
3. She said my private Neurologists letters from 2017 and 2020 were very vague because he was ok with me self injecting 3 times per week, why wait until 2024 to make that decision.
4. The GP said she was going to telephone a NHS Neurologist at the local hospital and discuss my injections with him. I asked shouldn’t I speak with/see the Neurologist and she said no, there is a 10 month wait, I said that was okay, I could wait, she said no, this is urgent. I questioned again, is it right that I do not get the opportunity to be involved in the conversation? The answer was no because the NHS is not going to provide for you any longer. I said surely it cant be that expensive for 15 ampules a month, she said it is nothing to do with costs, the NHS is changing and not always for the better.
5. I asked about speaking with my original Neurologist who I saw privately, he also works for the NHS, she said no, he has retired. I made enquiries and found out that he has not retired, she lied, so I will try to see him privately.
6. I quoted the NICE guidelines to her about injecting every other day until symptoms stop improving, she corrected me and said until symptoms START improving (wrong again!).
7. I asked if she could point me in the direction of the information she had on B12 being dangerous and that you can overdose, as I said I understood that it was not possible to overdose on B12, she said she found me defensive and was going to end the telephone conversation. I explained that I needed to know where to find this information, i.e. what journals she was referring to as it is not on the NICE guidelines, and that I needed to report these "new" findings to the Pernicious Anaemia Society who are 100% up to date on all things B12. She started to stammer and stutter and started ranting about being medically trained and that it is on the Mayo Clinic website and other clinical websites.
The thing that bothers me the most here is that she wants to discuss my B12 medication with a Neurologist that I will not be allowed to see or speak to and I feel there is something terribly wrong with this. I have noticed that my GP Practices CQC rating for the last to inspections has been “needs improvement” and poorly led has been flagged up on both inspections.
Thank you for reading this and have a nice weekend everyone.
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HKAnne
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Unfortunately there are too many ignorant and arrogant GPs…. The NHS is a safe place for too many medical professionals who are not really up to the job. These people are protected by te NHS. It is shameful.
GPS seem to have forgotten what it means being a doctor…. That is caring for people. They have it so easy.. no late evening work, no nights and weekend rotas anymore… and I have noticed they retire young… 55 …
They make so many errors too. Had I made such mistakes while I was working the company would have found a way of getting rid of me, quite rightly too.
Sorry you’re having such an unacceptable lack of care and support. I had to fight nearly all the time with GPs in the UK, Best wishes.
Unfortunately I still do… hence all the fights in order to get help and challenging the useless system. I lived in France… big difference in how people are treated. They believe in prevention unlike here where they wait for the situation to become so bad that the patients pay for the consequences of bad medical practice. So frustrating and disappointing plus scary.
I have met a very few excellent consultants but have noticed how much worse the system has become. So much money wasted in the NHS.
Irrespective of what the argument may be. I must come out in defence of Healthcare professionals. Like every form of employment, there are good and bad. However, in the medical profession, each one has trained for many years therefore, will be making decisions based on evidence based knowledge.
The fact that more evidence is required is not the fault of the professionals. Each will have chosen a specialty to focus on , even GP’s.
It is unreasonable in my opinion, to expect a doctor to be an expert in everything.
As for assuming that their job is easy, I can assure you it’s not. A lot of work goes on behind closed doors and many GP’s work evening shifts in A&E or volunteer in hospice care.
You are free to challenge your doctors decisions or the decision they have been coerced to make due to budget constraints. However, they are a profession worthy of respect.
If you have evidence to support your position, then you should present that to your GP or ombudsman if necessary.
You are entitled to your opinion based on your experiences I presume? Perhaps you live in a more privileged area where resources are less restricted. In that case you would be lucky.
Have you had to fight for help, investigations, treatment, many times? Have you?
My experience, in general, has been poor. If some tests come back ‘normal’ , then no other investigations are carried out. It’s amazing how nearly everything comes back as such, even when the result is at the very bottom of the expected range and one feels very ill. They then do not think they must carry on investigating, especially when the patient gets worse … one has to push and push … when one is feeling so ill, not really having the energy to do so. That is unacceptable, no matter where one lives. So there we differ in our opinions, based on personal experiences.
I can assure you I have often presented evidence (serious research papers) to my GP… but they don’t like it! Ego no doubt. So being trained for many years is one thing BUT carrying on learning while working is something else, which keeps them on top of their game, so to speak. Many professionals need to keep on learning while working long hours. So why make exceptions for GPs? Either one can do the job or they can’t.
Of course the job isn’t easy WHEN done properly. However, it’s more box ticking now… easier for them even when the problem hasn’t been sorted.
Indeed I have met a few excellent medical professionals, mainly consultants, over the years. I have respect for such people. No respect for those for do not even seem bothered in trying to find a way forward in helping the patients. Respect, in any situation or profession, is earned, not given because one has qualified as a GP. Would you not agree?
I have just read your personal information. You do have many serious conditions, like many of us. I noticed you take Liothyronine… I was refused this although I do not have a thyroid gland and was extremely ill. I fought for years until I found a decent endocrinologist who did not just treats diabetes as most endocrinologists do but had taken the time to educate himself about the complexities of thyroid diseases and he was appalled I had been refused Liothyronine. I do use it now in combination therapy with Levothyroxine. It has made a huge difference to my quality of life. But why did I have to fight so hard and wait so long for this treatment ? I was armed with many scientific research papers when I saw him. He was aware of a few papers but not of one, which he asked me if he could keep this paper. It shows real intelligence without the unnecessary ego trips. This is the kind of medical professionals we need.
I also noticed you used to live abroad and have now returned to the UK. Since you have had your health conditions for so long, did you not get help from the medical professionals where you used to live? May I ask where you lived abroad ? I would be surprised if this was in any West European countries.
I have had Pernicious Anaemia for more than 40 years. My condition was verified by a bone marrow aspiration and Schilling test, which is no longer the case.
As you probably already know, B12 is a water soluble vitamin which means that your body will pee out what it doesn’t need.
There are many causes of B12 deficiency including poor diet, increased alcohol consumption, advancing age and in my case, lack of intrinsic factor resulting in malabsorption.
Presuming that you have a deficiency, understanding the cause might help you to manage your condition.
You mentioned Parietal cells , can I assume that you have a malabsorption problem?
In order for B12 injections to work, you should ensure that iron, folate, vitamins C&D are in order to optimise absorption of B12. Diet is very important and until your condition stabilises, you should refrain from alcohol or fizzy beverages.
The recommended NHS maintenance dosage of B12 is given 3 monthly. My dosage is every 8 weeks due to peripheral Neuropathy and old age.
I would agree that one size does not fit all. However, in my opinion, your regime does seem excessive.
Trust me, I have experienced the symptoms of B12 deficiency and understand how unwell you feel. I also understand your frustration with your GP and the NHS.
When I was diagnosed, I was very ill. I lived in an area of urban deprivation and certainly was not privileged.
I was diagnosed by a medical Consultant who spotted the symptoms immediately.
He was very honest with me as he assumed that I was not eating properly because I was 28 years old.
Fast food was not a thing then but I was thin therefore, he presumed I wasn’t eating enough. This was not the case as I could eat anything and not gain weight.
Nevertheless, I followed his instructions about eating leafy green vegetables, red meat, pulses and no alcohol. However, I continued to lose weight and sleep.
Taking a sample of my bone marrow gave him the diagnosis and an endoscopy confirmed that I was not absorbing.
Nowadays, doctors don’t need these invasive investigations to make a diagnosis.
What has not changed, is the fact that you must participate actively in the management by ensuring that your diet is optimal for your condition.
B12 also has a hormone function which complicates understanding.
It can be difficult to get research funding for B12 research which is why there is not enough on human subjects though animal studies are widely available.
Unfortunately, you need to do your own research and convince your GP to send you to an endocrinologist with the ability to prescribe out with the guidance.
Incidentally, all Healthcare professionals must complete post registration education every year. If B12 does not interest them, then that won’t be their forte.
I think you must be confusing my situation with someone else from another post. I never mentioned parietal cells etc. I mentioned hormone therapy replacement for hypothyroidism…although I do have malabsorption problems and am B12 deficient and inject B12 as and when required. However, I never mentioned this in my first reply to you. My reply was concerning the lack of ability of many medical professionals… so it has nothing to do with B12 deficiency and treatment.
Many nurses are so uneducated… once such a nurse told me that B12 was dangerous, the usual ignorant nonsense that even GPs regurgitate like a parrot. When I asked her whether B vitamins were water or fat soluble she answered fat soluble !!! My goodness how can we trust such ignorant and uneducated people who are part of the medical service ? Unfortunately, once qualified many GPs cannot be bothered to educate themselves further and this makes for poor medical services.
My apologies, my response was meant for HKAnne however, some parts were responding to you.
Old age doesn’t come alone😀
I have lived in the Middle East and several countries on Continental Europe.
There was very little difference in the diagnosis and treatment of PA or B12 deficiency.
Without Liothyronine, my life would be worthless, I would not be able to function. I was on 20mcg but due to heart disease, doctors suggested reducing to 10 mcg.
Interestingly, I have PA and Hashimoto disease, both Autoimmune conditions.
I have metabolic syndrome which is now being linked with B12 deficiency.
While I can see the link as people age, and in today’s obesity epidemic. I fail to see the link at the time (80’s) I was diagnosed.
All Health Care Professionals must prove that they have updated their education and practical skills before renewing and paying for their professional registration.
I thought so. Apologies accepted of course, we all make mistakes.
I had to wait 35 years before I found a knowledgeable endocrinologist who prescribed Liothyronine ! Life was miserable… while bringing up children. I was 34 when I had my thyroidectomy (papillary adenocarcinoma) and was only prescribed T3 35 years later.
I have many autoimmune diseases too.. rheumatoid arthritis, Sjogren’s, uveitis, hyperthyroidism etc. The list goes on…, it is frustrating and debilitating. Therefore having decent medical professionals is most important. It’s often the luck of the draw.
One of the problems with finding interested doctors, is the way they were treated during Covid.
Doctors, Nurses and allied professionals, were treated like military personnel. They were ordered to work on the frontline with a virus we knew very little about. They could not go home to be with their families and many stayed in hospitals and care homes.
Many worked with minimal PPE which must have been terrifying, especially when colleagues began to die.
The NHS had been struggling long before Covid but now they were in crisis.
Staff realised how worthless they were in the eyes of the NHS and the Government.
This has resulted in apathy, staff follow orders now and no longer act as patients advocates because it’s pointless.
People without knowledge are making decisions about peoples lives. Non Medical personnel without understanding are setting budgets for NHS care.
So can you really blame doctors and nurses for having no fight left in them.
That’s why they just do their job and follow new rules and guidelines like sheep.
when they are not experts in the field then they should not be making such blanket false statements that the Op s GP did but rather wait for more info from an expert.
Respect is earned in relation to your actions and the actions of this particular health professional do not command that. Not istening to your patients and then berating them for their lived experience is a sign of incompetence and ignorance.
Well done for standing up for yourself, I would send that transcript to your MP and copy the practice manager. My MP got onto the local health board, GPs and local pharmacies about my complaint, I even had a letter from the Health Minister. Confirming I was right, in accordance with NICE etc. it was a different complaint not B12 related but it’s been smooth sailing since.
Certainly write a polite but to the point letter to the practice manager putting all that you wrote here, ask for an explanation. Point out how you’ve deteriorated and the stress it has brought into your life. Also give a factual account of the dismissive way you were spoken to. There’s no excuse for anything you experienced. Always remember it is your health and nobody knows your body better than you.
Thanks B12again. Unfortunately, I think a lot of people must be experiencing the same thing, it's sad but I don't think anything will change soon sadly.
So disappointed for you. It’s a ridiculous situation and the clinical time that will be involved to resolve this will cost far more than a prescription of 15 B12 doses a month that keeps you well.
Well done for being so articulate and standing your ground.
I am experiencing similar issues with my GP who has only given me the 6 loading doses in 2 years and who now claims that I do not have PA as my B12 levels have improved and I have twice tested negative for Intrinsic Factor Antibodies despite being diagnosed by a specialist who took bloods which tested positive for autoimmune.
I have “shopped” around and found another GP practice that is willing to listen and engage. Early days but jumping from one pan to another whilst trying to avoid the fire seems increasingly common.
Thank you for standing up for yourself because you are helping us all too. Our voices will be heard one day.
Hi Wwwdot, I'm so sorry to hear what you are going through with your GP, I hope the next one is better for you.Yes, my GP is wasting NHS time and money greater than the cost of 15 ampoules per month. Says it all really doesn't it.
Hi, I'm thinking of finding another NHS GP due to my b12 injections being stopped at current GP! And citing all medical resources etc and complaining isn't getting me anywhere.
Please can you advise how you 'shopped' around for a better GP?
I'm concerned as my medical records will now have all the current GP's inaccurate information on it, Inc them stopping the b12
So I worry re changing GP only for them to agree with the current GP!
I desperately want to change GP but need somehow to know I'm moving to somewhere better and no idea how to do this - especially as treatment can differ massively even at the same practice between different GPs!
I rang a different surgery and I was lucky enough to speak to the practice manager. I explained the situation and asked if they had any patients with PA. I explained I was worried about jumping from the frying pan into the fire. She suggested I come and “interview” a GP and made me an appointment as a temporary patient. Having passed the interview I then joined the practice. Early days. Fingers crossed!
There were only two GPs so I met with the head GP - I had a 30 minute relaxed meeting - that is a longer consultation than I have had in 2 years with my former GP! It was the practice manager who decided which GP would be best - I presume it was the head GP, simply as they are the head GP.
The head GP read the letter on my diagnosis from a B12 expert I had consulted and said that it was clear I had PA. He said he had homework to do as I was his first patient with a PA diagnosis. Within a week of transferring to the practice he had written a referral to the Gastroenterologist requesting a stomach screening for cancer! I now have an appointment in November.
He has also offered to supply me with B12! That was a total shock! He has also offered to do blood tests as I require - currently every 6 months. I feel very blessed.
I will try to see the GP I "interviewed" each time but I will check out the other GP too just in case as the head GP is closer to retirement age than I would like!
"Its a vitamin for goodness sake - You get B12 from eating food"
"You haven't got PA because you've had the injections"
" No! - you cannot have more frequent injections it's - against the rules!"
These are the sort of inane comments I've had made to me by a string of "one size fits all" GPs during the 52 years I've had PA. They probably all missed the one Wednesday afternoon tutorial on PA/ B12 Deficiency during the years of their training . Oh - I forgot it's not PA anymore.
Are your iron and folate levels OK?
Well done HKAnne for fighting your corner.
I wish you well.
The cartoon was done by a late friend and contributor on here a few years back.
I have one of Beginner1's cartoon's pasted onto the box that stores my needles, syringes etc. Makes me smile from ear to ear twice a week !
HKAnne : you made me laugh - all that about urgently needing to inform the Pernicious Anaemia Society ! I said exactly the same thing when a haematologist warned me that B12 was toxic, carcinogenic and highly addictive : "Please show me the evidence so that I can pass it on to them. "
She pretended three times that she hadn't heard me -and changed the subject.
Later, when I was sent to Adult Inherited Metabolic Diseases consultants, they told me that, if they find an hereditary cause in DNA for raised MMA with B12 deficiency, their advice to GPs is that the patient needs two injections a week for life *. Sadly, they told me, some GPs ignored their advice - and the patients had to return, in a deteriorated condition, to them for further help.
The DNA people found nothing of significance in my DNA regarding MMA - and apologised for not being able to help me with my problem. It can be completely disheartening to reach the end of a long road and get no answers. They made it bearable.
My family have, among other conditions, vitiligo, psoriasis, rheumatoid arthritis, Grave's disease, B12 deficiency... so it wouldn't have been surprising to find I had B12 deficiency and raised MMA because of PA - but three IFab tests have returned negative results. I have had tests that rule out all else and don't have any other diagnosis beyond functional B12 deficiency.
I find that frequent B12 injections can mainly help control my symptoms, and has done since 2016- when my GP trialled me for 6 months on two injections a week after having made the diagnosis that stopped this nightmare for me. I now make my own decisions about what I need and self inject.
* So, given the evidence, it is possible, within the NHS, to be prescribed with lifelong frequent injections. Not just possible - essential.
I'm really interested in your referral to adult inherited diseases metabolic clinic. I asked my haematologist whether there was any genetic testing i could have because my daughter very likely also has PA and our GP has refused her injections (we're buying from Germany to keep her stable).My Haematologist (who has been excellent in most respects) wasn't aware of anything, but I am now wondering whether i should ask for a referral to another clinic.
My GP, in response to her letter, was advised to get in touch with Adult Inherited Metabolic Diseases "if a further opinion is required" in a report from a haematologist at a major hospital. This was after recent nerve conduction studies and brain MRI from neurology had shown nothing much - a referral from haematology.
I had been referred to haematology when B12 deficiency symptoms returned despite being given twice-weekly injections for 6 months, and MMA had remained raised. My GP had concerns, but believed that this had gone beyond the remit of primary care. She worked really hard to chase up any leads, get advice on treatment and find me some answers.
I think Metabolics was the last available option of a long list of consultants.
Thank you Clive for the reminder of my dear friend Beginner1/2 ( Rosemarie ) and her cartoons . I used to take her out once a month for lunch and a drink ( alcoholic of course ) We met on this forum , when we found that we lived quite close . . She really could not walk due to GP ‘s neglect of her P.A. Her spine was affected because of medical ignorance.
And now in 2024 , the ignorance still persists . It is honestly scandalous .
Rosemarie was before my time but the cartoons you shared lifted my spirits. A black sense of humour is essential to survive the ridiculous situation we find ourselves in
Please do share more as I sure Rosemarie would want that.
Thanks Wwwdot - they were all colleagues from the 1970/80s when we worked for Rexel Limited the office machinery people. Barry Sharp was the man who "took me on" straight from college where I'd been retrained (as a 30 year old registered disabled person) in book-keeping, Naz Hussain was an engineer in the production unit looking after the plant and machinery and Sheila Bailey was a (then) delightful teen aged machine operator.
Sheila and I had reconnected via a FB group seven years ago and despite a 20 years age gap and 100 miles distance between us messaged each other dozens of times a day. She was a trauma nurse ar QA Portsmouth hospital and I travelled with her though that dreadful blood cancer disease from her diagnosis in October 2022 until her death six months ago at the age of only 62 - far too young - I still miss that girl.
I'm so sorry to read about the way you've been treated.
"The thing that bothers me the most here is that she wants to discuss my B12 medication with a Neurologist that I will not be allowed to see or speak to and I feel there is something terribly wrong with this."
Patient Association article about Informed Consent and Shared Decision Making
Have you considered putting queries about treatment etc into a short letter to GP and maybe copied to practice manager?
Should avoid face to face confrontation. My understanding is that letters to GP should be filed with medical notes, I include a request in letter to file it with my records.
Link about writing letters to GP about B12 deficiency.
I left detailed info in threads below which I think you might find useful eg suggestion of UK B12 documents to read, B12 websites, good articles to pass to GPs etc
There have been several threads recently about UK forum members having their NHS B12 injections stopped. Maybe you could search forum posts using terms "injections stopped".
I hope you get the help you need.
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
Hi Sleepy Bunny, many thanks, as always. Yes, I am a PAS member. I'm looking forward to reading the link you sent me on Informed Consent and Decision Making because I know it is not right for a GP to get advice from a neurologist that the patient has never met or spoken to. Even if the neurologist was on my side, which is probably unlikely, she could just report back what she wants to report back, I doubt that she will give me anything in writing.Take care.
Well done for fighting your corner. I tried to do the same but the Dr at that time came to the conclusion our relationship ( I wasn't aware we had one ) had broken down and ended the call. I was passed onto yet another Gp who knew little of how to treat PA !
It's a constant wearing battle and as for the CQC I found them a complete waste of time. I think you will find most surgerys are poorly led and in need of improvement. My surgery only has one star !
Hi Jillymo, I totally agree with everything you have said. I can imagine the CQC would be more likely to side with the GP, I'll make a call on Monday though.
I have a relative who got a very good result from the CQC when she made a complaint about her GP(nothing to do with PA though) could be luck I suppose but she was very happy with the outcome she got. Best wishes
I've had a doctor say "NICE guidelines aren't for the real world" and another say "I know B12 is trendy with celebrities and all over social media at the moment" (is it? I've never seen it 😂). Also been told that special approval is needed for EOD injections (I was only treated with 6 loading doses despite neurological symptoms and quoting all guidelines to them).
It's crazy the things they'll come out with! My doctors seem so against B12 injections which take 30 seconds yet send me for numerous blood tests without a thought. Strangely zero logic.
My GP, by contrast, recognised that the usual B12 regime was doing nothing for me - not the 6 loading, not the 3-monthly maintenance - so tested my MMA and found it raised. This gave her the diagnosis she suspected: functional B12 deficiency. This was backed up by the testing laboratory. This gave her the restart that I needed : two injections a week for the next 6 months. It felt like a life-saver, and certainly stopped the rapid deterioration I experienced.
She has since left the practice - as Jillymo says, you only get the one star ! - so now I self inject.
We are not celebrities - we are ordinary people just trying to get our lives back, or get as close as we can to that - even if that means angering consultants, GPs, nurses, and having to stick needles into our thighs on a regular basis.
For us, it's not a choice.
I was once told, by a consultant who should have known better, that he understood the "sense of euphoria experienced when self-injecting B12" : horrific that they actually believe that. Nowhere close to the real world that we are forced to inhabit.
Oh that's interesting! I've never had my MMA tested - other than intrinsic factor doctor hasn't made any attempt to find out why my b12 serum was at 152. And they tried to use intrinsic factor against me so I'm half minded whether to ask for MMA or not in the future if my symptoms come back before the 12 weeks. Wouldn't be able to SI as I find the injections too stingy to do myself!
MMA test seems difficult to get, I'm not sure why but would guess at "cost".
At primary care level, it is also a problem because many hospitals don't seem to provide the test. My GP had to try three times to get lucky.
Generally, the MMA test is used where B12 serum results are in a grey area, but symptoms presented seem to indicate B12 deficiency as the most likely cause. In your case, with a serum B12 of 152 (ng/L or pmol/L ?), you would need to check the local range. What is considered as "normal" where you live ? I was lucky that my B12 was 196 ng/L with a normal range starting at 197 ng/L.
I doubt that your B12 level would be disputed.
It might still be worth asking for an MMA test. I had six tests given over three years, the others were in secondary care, mainly haematology : despite frequent B12 injections, my MMA remained raised until the final test, when it suddenly dropped into range.
No-one likes it, but if the only alternative becomes "going back there", the choice is made for you.
To be honest, it has never become as automatic as cleaning your teeth or brushing your hair - but it does get easier. At first, I used to find all the excuses under the sun to delay the moment but now see it as a necessary chore, and just do it.
The sense of euphoria is a consultant-based myth - that or I've been doing it wrong for seven years !
Sorry to hear you have had to go through all that Battypatty2. You would think Doctors shouldn't lie to us, but it seems like they do quite a lot of the time
I was having regular 12 weekly shots since 2002 with a diagnosis of PA (17 years). 2020 my GP did exactly the same as yours. She said and got a haematologist to say I did not have PA. My original diagnosis must have been a misdiagnosis. She had a duty of care etc. and my injections were stopped. Last year I had the symptoms all back again and asked for a B12 test. The outcome was that I do have PA after all and they have had to restart the injections. Unfortunately I still have the symptoms which I am angry about. Quite a few years ago now, just prior to when Covid started, I used to go to meetings at our local CCG to do with medicines, not a deciding committee, more a being told what had been decided. It was all about saving money on medicines. We were told that they were going to try and stop B12 injections altogether. There had been an experiment in Sweden (or somewhere round there) where everyone was put on tablets and it seemed to be successful (turned out it wasn't) so they thought they would try it here. People could get injections to get their numbers up then to be told they will have to maintain on tablets (which they will have to buy over the counter). The same reasons/excuses being given it seems by all doctors. Pity I didn't keep the copy of the letter they were sending out to all doctors. Eventually they found that people with PA had to have injections. But they are still trying hard to give as little injections as possible. I showed some written research I had printed out to a doctor (about thyroid - which again they are not treating me properly), and he just screwed it up in front of me and threw it in the bin. Anyway I hope you get something sorted to keep you well.
So a Swedish experiment that later failed was adopted as a cost-cutting solution, while written research presented to a GP is binned dismissively ?
A real pity that the letter circulated to all GPs hasn't been made public.
This is now a numbers game - both total serum B12, and calculated reduction in costs - and not much to do with either previous diagnoses or severity/frequency of symptoms.
Way back in 1956, a neurologist wrote:
"It must be emphasized that the cerebral symptoms, like those due to lesions in the spinal cord, may precede the appearance of anaemia for long periods, sometimes for years, and that they may occur in the presence of a completely normal blood picture and bone marrow and even in the absence of spinal lesions."
In his article "Cerebral Manifestations of Vitamin-B12 Deficiency", he discussed diagnosis :
"The great difficulty in establishing the diagnosis of vitamin-B12 deficiency with involvement of the nervous system is the lack of correlation between the haematological and neurological manifestations. There is also a similar lack of correlation between the spinal and cerebral symptoms of the syndrome."
This article was from a link provided in a post from a few days ago. This neurologist, J. MacDonald Holmes, was looking hard for a means of being able to diagnose and treat patients at an earlier stage to prevent a "....severe dementia even more crippling than the paraplegia produced by the spinal lesions, and it may be completely irreversible when treatment is delayed by failure in diagnosis."
- not a piece of research to end up as a bin-liner !
My sympathies, I am going through something similar with my GP and hypothyroidism…letters from private endocrinologist recommending dosage divided between NHS prescribed drug and private one I pay for, test for etc, but still he wants to over ride it all and make me ill….. I don’t understand why when we are forced to go private as no NHS referral etc offered, do they only believe the private dr. only seems to know what they are talking about for a year or two, while the NHS leave its patients on the same doses of ‘meds’ for decades without change?
Stories like this are why patients are losing trust in their GPs and the NHS. The net is full of horror stories featuring doctor negligence and ignorance. Just because someone has a medical degree doesn’t make them infallible.
I think the biggest worry is not so much the ignorance (although that obviously needs addressing) but the willingness to lie. I had similar experience which led to me changing practices to a holistic one. I’ve since found that many are leaving the first practice, hopefully the powers that be will notice. I hope you’re able to find a decent doctor.
My daughter had a similar conversation with her GP last week and ended in tears and was referred to a pain clinic and they want to do blood test against the nice guidelines. I will continue to do her injections and pay for them privately until she finds a GP that does understand. Good luck 🤞
I'm sorry you're experiencing this; having medical professionals who are in charge of your health care who lack knowledge and professionalism is very upsetting and unsettling. May I ask what part of England you're from? I moved up north a few years ago and the treatment I have received from the medical professionals has been quite horrific. I regret moving up north, and I'm thinking to move back down south, but if this kind of treatment is happening all over, then I might need to move to another country! I hope things work out for you.
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