I am not writing this as a moan I promise. I genuinely don’t understand and would love someone to help me find a perspective I am missing. Why does it make more economic sense for gp surgeries and care commissions to pay lots of money to test for unlikely causes of problems than try b12 injections or pay for simple b12 blood tests. For reflux they’ll happily dole out PPIs to see if they work rather than investigating the cause, why not the same with b12?
The consequences of b12 deficiency for my mum in the last 10 years of her life were devastating but I always told myself it was horribly bad luck and that she was just rare. I spent a lot of time scrolling through the website of rare diseases trying to work out what was wrong. I even gave her a picture that said ‘you’re a rare bird’ with a nightingale on it because nobody could ever work out what was causing her brain deterioration. Over 10 years she lost her speech, ability to walk and see properly for no apparent reason. After 8 years someone finally worked out she had PA. In the meantime we visited so many consultants, mri scans,nerve conduction tests, a brain operation, a cervical spine operation, drugs, psychiatric hospitals and monthly visits to a&e for falls and suicide attempts. How expensive was all of that?
If someone had given her B12 injections when she started complaining about pins and needles, weakness, wonky balance and struggling to find words, I wonder how much the nhs would have saved and whether she would have been saved those last horrible years. Now I have pins and needles, gut problems, nail and hair issues, cracks at side of mouth, other autoimmune diseases, vit d and other nutrient absorption problems. Two gps (i tried a second private opinion) are trying to send me for - yes you guessed it - nerve conduction tests and mris, but they won’t pay for an MmA or iFAB test or accept that my b12 low in range might cause the problems. ‘The lab won’t allow it’.
I read the messages about falls under another post today and it breaks my heart. So many people suffering like my mum. I’ve just realised she wasn’t rare and that’s unforgivable. I’m going to do private tests for me but what about the people who haven’t found this site and don’t have the money?
I sincerely hope that I am missing something (economic or otherwise) and it’s not just ignorance or neglect that’s driving these policy decisions.
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Sparklyjenson
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How I agree with you ! Now I now know so much more about P.A. I believe that my mother died from the effects of untreated P.A. I have my own view as to why this situation exists , but never dare express these views . It is an abomination . B12 injections are so cheap , and only take 5 minutes of a nurse’s time . Nurses are not paid massive salaries . So yes , where is the sense ? also patients could be shown how to self inject sub-cutaneously quite simply , just the same as some diabetic patients inject insulin ) ( except that method is not licensed in U.K.for B12 — but we can see that it is in Germany where we mostly get our B12 ampoules from ) The German health authorities are not completely stupid , so they must know that it’s an effective method . I stand in great danger of getting completely carried away now . As you say, the attitude of the medical powers that be here is total madness . I believe that in general , that GPs are in a much too cosy relationship with the pharmaceutical industry . That industry makes huge profits from their drugs , B12 is cheap and not hugely profitable . GPs like to maintain a good relationship with the pharmaceutical industry because it is to their advantage …………. Make of this what you will . ………I just cannot carry on with this post because of what happened to my mother , and to myself . My life would be a total misery if I had not found the P.A.S . I won’t say much more . It’s the middle of the night , and my burning feet wake me up , that’s why I’m on the forum at this ungodly hour . My feet were numb , but I rescued them by finding out on this forum , that I could self inject . But they are left with a burning sensation . I’m unable to take nerve-painkillers
I had to get my diagnosis from a private doctor Luckily I had the means , I think of the suffering being caused now as I write this . and my heart bleeds for all those patients .
My surgery had sent me on my way with a b12 reading well below range . Sorry I must stop now . This isn’t answering your question . Martyn Hooper has taken on the onerous task of trying to help P.A. patients and to tackle the attitude of the health service , . He walks a very difficult path . The arrogance of doctors is breathtaking . I don’t care if I get banned from the forum . . I haven’t written this very well because I’ve got too emotional . I realise that I’m totally powerless in the face of the resistance of the medical profession to reason . It’s best that I shut up now . This hasn’t helped you . But you have my every sympathy Sparklyjenson . I was talking to a private doctor who doesn’t. work for the NHS , and he agrees with me that the position of PA. patients in U.K. is outrageous . …. Thank goodness for this forum . Best wishes to you .
Thanks for your input Nackapan . I am absolutely certain that if Pernicious Anaemia were treated with a drug that was produced by “Big Pharma “ , we would all get the treatment that we need . Why do I think that ? Work it out ! ( I’m sure that you have ! )
Financial wise it makes no sense, people losing there jobs, (put on benefits... loss of tax revenue) endless tests (literally thousands) patients needing carers the list goes on and on
THE NEEDLESS SUFFERING.
Perhaps one day the penny will drop in the NHS, but I doubt it.
Wedgewood if you get banned from the website for telling the truth it will only show the nhs in it's TRUE light.
Thanks Sallyannl. I honestly could have said more about why I think P.A .patients have such terrible treatment ( that’s if they manage to get any!) But I had to stop myself . I get so MAD when I think of the suffering involved . I become so carried away that I cannot express myself properly.I shake with rage at it . We are amongst the lucky ones who know how to help ourselves . All the best to you .
I am so sorry to hear about you mother, Your reply to spraklyjenson has really fired me up. I believe my father died from B12/PA , he was never tested just given drugs for other things, he was so fed up with not getting answers, he couldn't swallow and decided he did not want to be fed by tube so opted for suicide/ nil by mouth, which I understand is the only way the NHS can assist suicide. It was kept from me , when I realised what was happening I went straight to the hospital to bring him home but as I arrived it was too late. It was because of this experience that I started researching and found Sally& Stuart Patcholok book epedemic of misdiagnosis and recognize all of my dads symptoms and my own a few years later. I have experienced hostile attitudes and what has been written in my medical records is shocking, although I won't go into detail at this stage. I juts feel my dad could have lived longer if he had been tested. I suffered the same symptoms , My legs collapsed beneath me, I lost so much weight I could feel my bones and I could not swallow and my brain felt like it was floating?? and my hair was falling out, I really thought I was dying. I was diagnosed with B12 in 2016 and this is when the hostility began, six moths after the hospital, emergency visit and only because I asked for the test. I was supposed to have loading injection but was injected with what looked like water, my head was not good at the time and I was still very trusting. When I realisedwhat was happening, I complained then given vials that i could pick up from the chemist and take to the nurse myself, but this was only every three months after more complaining I got it to two months- now I self inject weekly by buying my own. I told the practise and they are not happy , in fact they did not believe me and appeared to do checks to see if I was lieing. I could go on about this for much longer and will update if i make any more progress in changing attitudes at this practise at least. But wedgewood I really am sorry about your mum and you have my sympathies as does anyonelse who has suffered similar.
if your injection wasn’t red , it was NOT b12 . It’s outrageous what is going on . I have my own idea why , which i really cannot express publicly, because this forum and Martin Hooper have to stay reasonably friendly with the medical profession . ……….I’ve no doubt that many people have died because of nog getting treatment (we know what PERNICIOUS means !)
Used you have had terrible battles , and you have my every sympathy . Does the medical profession still swear the Hippocratic Oath?
I hope I have not gone to far with my reply - as for the Hippocratic Oath, I have mentioned it several times and it would seem they do not. as for the injection i get prescribed after the water like one it is now a very pale pink and looks very watery which is why I buy my own
I've come to realise that, however we rationalise it, the medical community will always let PA and b12 sufferers down.
That's because they simply do not want to accept that a vitamin deficiency could cause such serious problems in the body BUT also have the chance to be rectified or reversed with treatment.
Additionally, b12d symptoms vary between patients. And this makes diagnosis near impossible without extensive testing.
I am sorry its been such an ordeal for you. And I hate to be a pessimist. But I really cannot see anything changing soon since all Western and even some Eastern medics don't have any awareness of b12 deficiency or PA.
Thank god for Dr Chandy. Do read his book 'Vitamin b12 deficiency in clinical practice' and consider injections with b12 sourced from German pharmacies.
I put off self injection for fear of hurting myself. Im not a doctor, but my doctor did not want to help. I had all the tests and met with several specialists and have been made to feel like a lunatic.
>Two gps (i tried a second private opinion) are trying to send me for - yes you guessed it - >nerve conduction tests and mris, but they won’t pay for an MmA or iFAB test or accept that >my b12 low in range might cause the problems. ‘The lab won’t allow it’.
I've had exactly the same response. I had a B12 level of 201 ng/L in a reference range of 197 - 711 and I was told that it was normal. The reason I was given is that these results fit into a bell curve and therefore if you are within the reference range, you are normal.
My (perhaps incorrect) understanding that is that the Serum (Total) B12 test and the 25-hydroxy vitamin D tests measure the amount of Vit B12 and D in the blood respectively.
There are other B12 and D tests. I don't know what the Active B12 test is actually measuring and there is another Vit D test (1,25-dihydroxyvitamin D) which I believe measures Vit D in one of the internal organs - it is a blood test where the blood has to be kept refrigerated so it's not done routinely.
Can anyone explain what the Active B12 test is testing and how it differs from the Serum B12 test. Is the Serum B12 test just measuring the total amount of B12 in the blood sample and if it is low, is it low or normal?
The PA Society seems to suggest that the Serum B12 test is not particularly accurate and tends to overestimate the levels of B12. Has anyone did a clinical trial that establishes this?
I am saddened to read your post and totally agree with regard to the NHS not doing the necessary tests and prescribing the essential treatment to prevent the progression of PA.
I have had various brain scans which have shown lesions and vessel damage.
I can not for the life of me understand why they are refusing to test you further - I am having an MMA test on Monday. I can only assume it is because the instrinct factor and MMA test are often inconclusive.
I would have thought seeing as you have a family history of PA they would have taken things more seriously. Where the NHS is concerned there has never been economic sense applied to their strategy !
Firstly, I'd just like to say that you are absolutely right.It is appalling that very ill and frightened people are having to argue their cases individually by reading medical research and go along with all the tests and consultant appointments in order to have other possibilities ruled out. It takes years and results in conflicting views and inconclusion. It takes it's toll.
I did tell my GP many times that no, I wasn't depressed and didn't need anti-depressants, but that there may be something of a self-fulfilling prophesy in this approach. I hadn't improved during the loading dose and knew that I was rapidly getting much worse with the 3 month wait for "maintenance" injections.
I did so much research and so many symptoms record charts, took so many photos that my GP said I was getting obsessive. I told her this was desperation.
Once she took me seriously, I got the help I needed. She arranged for an MMA test - which was turned down by several laboratories - it was found to be raised. She diagnosed me with functional B12 deficiency and new regime started: it was supposed to be three injections a week, but nurses could not fit me in so it was actually 2 a week. Still....who would argue with that ? 3 months of ferritin and folate replacement started too.
The nurses, having never had to veer away from the usual routine, were either nervous, puzzled or downright suspicious (what is it about B12 ?), but despite this I was getting better, the GP was happy too with progress- and so stuck to her guns: the injections continued at this pace for six months. I was found to have osteoporosis of the spine so vitamin D started too.
I got worse again, so B12 injections were reduced to once a month and I was referred to a haematologist. I was told that this had gone beyond the remit of primary care.
The haematologist warned me off B12 - saying it was highly addictive. This was something I had never heard so I asked for the research link. Nothing. She passed me to a locum who warned me off B12 - saying it was carcinogenic and toxic. Again, not that I'd heard so I asked for the research link. Nothing. I showed her the one scanty piece of research that I could find on functional B12 deficiency, suggesting "frequent injections", she said "but look at the date": Turner and Talbot 2009. It was 2017.
Despite my MMA being tested and found to be still raised 4 more times, I could see no
likelihood of them advising my GP to reinstate my B12 injections. They did not go as far as stopping them altogether, which given their dire warnings seemed strange, and they advised no more than 1 injection every two months. I was sent to neurology for tests.
I started self-injecting every other day. The next day, I had an appointment with my GP and told her.
I was sent for a breath test to rule out SIBO as the cause of raised MMA. It was inconclusive: either SIBO/IBS. I was sent to 3 gastroenterologists: they all said IBS. The first two did no tests, just talked to me. The third at least ruled out Coeliac disease.
I was sent to Adult Inherited Metabolic Diseases who looked at my DNA. My MMA was tested for the 6th time: it was well within "normal" range for the first time: I'd been self injecting EOD for about 9 months by then. In all this time, only one person ever told me that I was doing exactly the right thing, to continue and not get disheartened, because it would take a very long time to recover: he was an ENT consultant and he was right..
My DNA gave no clues and so the metabolics consultants were sadly unable to help me find a cause. They apologised and were very kind. They advised me to find support on the Pernicious Anaemia Society website. They knew of Martyn Hooper and about the new research trials. They also told me that if a genetic inability to process B12 was found, their advice to GPs is to ensure B12 injections twice a week for life. They find it hugely frustrating that they have patients return to tell them the GP refused this request !
My family history has no known PA diagnoses although autoimmune conditions abound - two sisters have Grave's disease, psoriasis common and mum also had vitiligo that spread from a childhood vaccination site. One niece has also just been diagnosed with Grave's and B12 deficiency.
All of my sisters' children have autism.
There is much, much more work to be done here.
One tiny ray of hope for you: I was sent to an Oral medicine consultant to examine my almost permanent angular cheilitis (split, sore, bleeding corners of mouth). I'd had this for a decade. He several times tried to grow cultures: staph or candida - nothing.
This is now a very rare problem for me, and his answer was to use only 100% lanolin nipple cream, nothing else, twice a day, and apply without contamination of the tube contents- put a little onto a teaspoon and apply once from this. It worked. I still have to do this all the time though. I stopped once and the cheilitis was back within a day !
Of course you are right. "Follow the money or the love of money is the root of all evil"; use whatever phrase you want. I think it's all very calculated. When you're wealthy there is a chance to play the system, use the system or even run the system. Kind and decent people don't look for corruption and may not recognize it until it is too widespread. I think there are many decent physicians who are caught in the system but the system is everywhere. There are some who move outside the system and are now targets OF the system. But they are working hard to beat the system. (There are better words than my overused "system" but I dare not go there.)
We know that human life is of less and less value in this world unless it can be used monetarily so we shouldn't be naive about what is occurring but I don't think it's entirely hopeless. In the meantime we have to work around the situation as it exists which is why a forum like this is so important. Sharing ways of doing that can be life affirming and your post sheds even more light on the truth of what people are facing. The incongruity of the methods used to come to a diagnosis makes the head spin. I don't think you've missed a thing.
I was diagnosed 25 yrs ago with probable PA , (symptoms, and family ), had monthly jabs. Then after 6 MTHS they were stopped by surgery, waiting for Schilling test that never came So symptoms came back and more of them eventually new GP decided to start them again 3mthly . But more symptoms Another new GP , enlightened, started loading doses, gave me another lot of loading doses. Said surgery couldn't afford to give me the ' guideline ' EOD so agreed to allow me to self inject . Yippee. The people that shouted at me and were very obnoxious were the nurses, not wanting to give me injections, or teach me.
How ignorant and not respecting the doctors instructions.
Sick people justify NHS existance and massive budget. Easy targets are those with little understood conditions - B12 deficiencies/defects, me/cfs, fibromyalgia.
So sorry to hear about your Mum - it's terrible that should ever happen, but it does. The cost of non-treatment must be huge! I was scheduled for surgery on both legs when I was found to be seriously B12d -- 3 B12 injections and I could run upstairs, after 8 months on crutches. I'd had MRI scans and seens specialists and all. The pointless cost (and risk) of those unnecessary surgeries dwarfs the cost of injections for ages. My GP has pronounced me 'cured', ignoring the neurologist. So I SI, which has made me so much better.
Hi there , have just read your post where you mention gut problems. I don't know if this will be of help but had the same, amongst other things and after a lot of research decided it was gastroperisis ( sorry may have spelt that wrong) it has never been diagnosed. I stopped eating meat as I could not digest it and it caused a lot of pain in my gut, I still can't eat red meat or chicken. I bought kefir from 'chuckling goat' and do a course about once a year I also try to consume a lot of oil such as olive and flaxseed although not keen on the taste of the latter the olive oil is naturaly anti inflamatory. I also used dulcolax to get my meals to move out of my stomach and had to keep on top of this as i would feel very sick. Things have improved after a few years and rarely use it now. I also try to drink more water which I do not like, so I make a large mug with pieces of ginger and a half of lemon juice . Ginger is a natural antibiotic ( i understand)and is quite soothing I try to stay away from pain killers if i can. I also cut out bread for a while and now only eat Bertinet sourdgough. I hope this helps a little
Thank you to everyone who took the time to reply. I was SO frustrated when I wrote this. Thank goodness for this forum as I now know I’m not alone, and that definitely helps. As a result of comments on this thread I bought Martin hoopers book (excellent) and I’ll get Dr Chandy’s next. I’ve decided to believe that while economics plays a part in the solution, the root cause is actually the age old problem of how to change behaviours. My job is head of change so I spend my work life trying to change peoples’ behaviours and encouraging them to adopt new ways of working. I don’t know why I didn’t think of this before but changing GP behaviours will need exactly the same steps as all other change. To do something new, they need:
1.To be absolutely convinced that it’s worthwhile and understand and be willing to accept any potential downsides. I.e. they need the knowledge and evidence and the belief that this new action will make things much better
2. To be confident there will be good outcomes for them as individuals and there definitely won’t be negative unintentional consequences for them or other groups of stakeholders. They want to know someone or ideally many people they respect have thought this through.
3. Find it easy to take the new path or impossible to take the old path. Very busy people with stressful jobs follow the path of least resistance (it’s like water). If it is difficult to take the new path then most people will convince themselves they’ll get to it later, and later never gets to the top of the list.
The work the PAS is doing to provide evidence based, easy to digest information for medical professionals is spot on when it comes to number 1 and 2. The tricky one is number 3 - clearing the path to do the new thing. When grey areas arise and gps like mine are told the lab won’t let them do the follow up tests or it’s not the policy of the trust, that means a lot of extra work and who says my problem is more worthy of sticking your neck out for than another patient in the practise, or even for your own family e.g. getting home to put your kids to bed at least once this week. I choose to believe 99% of medical people want to help their patients feel better. They just need the path to be cleared. A change to nice guidelines and better diagnostics are critical for this.
There are a lot of comments on the threads about money. If some wealthy company could find a solution and spend their money marketing it to gps I certainly wouldn’t complain! It’s not unreasonable for that company to want a financial benefit - why else would they take the risk of spending a lot of money up front researching and doing all that lobbying and behaviour changing and paying wages, and interest on investment loans and not even knowing if they’ll ever make the breakthrough?
To conclude this post I just want to say thank you for your responses and to the PAS for their amazing work, and good luck in your individual quests for good health.
I have decided to look for ways to raise awareness so that I can make my my own little contribution while I continue my own quest!
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seeing neurologist, advice on b12 injections welcomed…
Serum ferritin too high?
Silent Reflux and B12 Deficiency- Any Link?
