Why do you think this awful condition is SO rife? There seems to be a diversity of ailments appearing all over the place. Is this a result of pollution and additives in our water, food, and air? This is a sensible question to ask as it's evident our bodies are under attack from this synthetic and artificial existence that is being created around us. I believe it is a huge contributor and human beings (of course not ALL) are way low in priority in the plastic world. Mammon is a god.
My wife has had vb12 for two and a half years now and she still suffers most of the terrible symptoms. About two weeks before her next injection (3monthy) they ware off and the Doctor insists she waits the full time. No mercy! Something is not right. Is this all down to saving money?
Deeply concerned husband!
Written by
Blake55
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A lot of it is due to ignorance within the medical profession and a "one size fits all" philosophy.
Make a list of your wife's symptoms and present this to her doctor and ask him to treat her according to your symptoms and (perhaps) even re-start heron loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
Note that it says that patients with neurological involvement should have injections every eight weeks. Often doctors don't read down that far.
If go with your wife so you can validate herr neurological symptoms as the doctor is less likely to pooh pooh them in front of a witness.
It is also important that her Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin. Both iron and folate may be needed.
I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.
I too lived in ignorance of what it was all about for nearly forty years as I didn't know anyone else with it and the nurses who gave my injections never asked how I was coping.
However I noticed a return of some neurological symptoms in the run up to my next B12 injection but my then "one size fits all" doctor refused to increase the frequency.
I joined the P.A. Society was amazed to find I was "not alone" and learned all I could and now have my injections more frequently.
Yes , I agree with Clive alive . It’s down to medical ignorance and just not caring . Vitamin B12,is terribly cheap . I have to self-inject because my symptoms return very quickly after the injection . I inject once a week to keep feeling well . An injection costs £1:00 for me including ampoule , needles, syringe and swab( buying in bulk -100 of everything . One cannot overdose . ( my doctor said it was toxic to have more than one injection in 3 months !) An injection costs much less than a cup of coffee in a café! Paying privately at a “beauty clinic “ or similar is very expensive .
I had totally numb feet due to P.A. But my GP said it was ideopathic ,(not knowing the reason ) I have rescued them , and now they just burn like hell . I get really carried away by the injustice of the situation . Our chairman Martyn Hooper is trying his best to get better treatment for us .
Vitamin B12 has no interest for the powerful pharmaceutical industry . It is cheap and not patentable . That industry is more powerful than you can imagine . It holds great sway with doctors , who can benefit greatly by cosying up to them . I will not elaborate , or my posting will be deleted .
Many many people are suffering in this situation , unless they are able to self-inject and It’s important to do this early enough , or some symptoms will become irreversible . . I suggest your wife does just that . It’s easy and cheap . Think about it . I’m so glad that your wife has your support . Often family members support the doctor in his /her undertreatment as doctors often state that it’s all in the head of the patient . I must stop ranting on , but I get so passionate when I think of all the suffering going on due to the ill treatment that is happening .
One can buy B12 ampoules at some German online pharmacies as it is an Over The Counter medicine there, as it should be here . In U.K. it’s only on prescription . Think about it . You can get back to us if the idea appeals . Very best wishes .
Thank you so much for writing; it is extremely appreciated. Don't worry about ranting on, I like passionate people.
Both my wife and I suffer bouts of fatigue and concentration problems (i have a vitamin d deficiency and side effects from other medicines) which interfere greatly trying to get things done.
When we feel good we try and do as much as we can before we become, again, less effective.
I have taken notes from all the replies and will write to my wife's doctor about my concerns. Hopefully, in the not too distant future, my wife's quality of life will have improved.
Will let you all know how things pan out. Meantime, take good care of yourselves and those you love.
Yes do let us know how you get on . It’s good to write to your GP . I believe that they are oblidged to keep it on record . I was offered anti-depressants when I was so very ill with PA . This often happens apparently .You could try reading some of the books that the founder of PAS has written . Just search for Martyn Hooper on Amazon books and you will see .
I only managed to get my diagnosis by going privately . My low B12 result (150 blood serum ) was considered normal and ignored even though I had many symptoms . My GP was miffed that I obtained a diagnosis privately . Now I do not trust doctors at all , and realise that I have to look after my own health . I know my experience was with only one doctor . But when I read postings here , I realise that the attitude is so wide-spread .
I must keep to myself why this is happening . Anyhow all the best to you in your quest for better health . 🍀👍
I've been asking the same question. Over the last few years I've read hundreds and hundreds of posts from people who either have been diagnosed (and often not received correct treatment) or have all the symptoms of PA / B12 Deficiency and generally improve with proper treatment if they can get it.
It seems almost like an epidemic.
In general and also in my family experience, I'd say there are a lot of people suffering from autoimmune disorders and either not being diagnosed correctly, or even if they are, not being treated. Thyroid is a case in point. And now we have the mysterious Fibromyalgia, ME, Chronic Fatigue Syndrome, and Depression as diagnoses. For which the only treatment is painkillers and anti depressants.
I'm also as certain as I can be that my father in law died from PA (Medical diagnosis: "old age") as he'd had an ulcer and stomach op years before and other known triggers - he had all the symptoms, had we but known about it back then, and even had a blood transfusion at one point for "anaemia" after which he rallied for a few months and then declined to a horrendous state before death.
Thank you sincerely for your post. Sorry to hear about your father- in- law. Bless him dearly.
I feel something strange, unhealthy in our world. Something's not quite right. It's as if they need ill people to maintain a good regular income. I don't like myself and others being taken for a ride.
Please look after yourself and those you love. Blessings!✋💙
, I’m sorry to hear about your father-in -law . It’s terrible to watch someone die from P.A.It takes a very long time .I’m now 100% sure that’s what my mother died of . Now I know all the symptoms, and how they are manifested ( by my own experience ) and the fact that it can be genetic . Her last 4 years were spent in a care home , in a very bad way . I’m sure that there are some people in those care homes who would not be there if they had the correct treatment, with sufficient B12 injections ,for P.A./B12 deficiency , which is luckily so cheap .
Can’t imagine where I would be without this site . Thank you Martyn Hooper . I hope he realises that he has saved so many people from misery by founding PAS .
While some may point to changes in the human diet as being a cause; I don't think that is entirely the cause. The change to a diet high in carbs and sugars for many people has been the case since the mid-late 19th century. We only saw the rise of b12-related, me/cfs, arthritis etc since the 1950's. They certainly existed before that time but not at frankly endemic levels and the longer lifespans cannot be used as an explanation as they affect the young just as much as the old.
Yet; the rise still really takes off from the 1950's onwards and especially from the 1970's onwards. That would make me suspicious that the primary cause is probably environmental. If you couple that with the fact treatment and practitioner education for conditions like b12 deficency has literally regressed since the 1970's: You have a recipe for disaster.
Look at what was done in the b12 field alone: The Schilling test gets replaced leaving practicioners with faulty diagnostic tools. The Schilling test was in many expert opinions an excellent testing system but: It required radio-isotope tagged vitamin b12 injections, multiple analysis of blood and urine over a 24-48hr period and various secondary tests to compliment. You needed a highly-qualified laboratory staff to be able to process the samples and interpret the results not to mention medical radio-isotopes. That made it expensive.
On the other hand; the almost useless "complete blood count" and usually unreliable "serum b12" can be done with standard computer-aided blood analysis.
Also up until the 1970's it seemed many "health districts" set policy to administer b12 injections and iron tablets especially to the elderly, sick and disabled over winter periods as a general rule. This was especially common in rural areas covered by a district nurse. Treating b12 deficency based on symptoms asap was also very common.
When Hydroxocobalamin started to replace Cyanocobalamin in the mid-70's; the overseeing "health authorities" took the opportunity to introduce strict guidelines so it could usually only be prescribed to diagnosed b12 deficient/PA patients. Obviously the GP could ignore this but; would then risk a fitness-to-practice tribunal. This cosh over health professionals continues to this day.
They also introduced rationing of frequency of the b12 doses. This rationing was entirely based on cost and not on medical evidence to the effect of more regular doses. It remanes a bane to this day for many b12 patients.
It’s got nothing to do with modern living. B12 deficiencies have been around for ever. It’s just that people weren’t diagnosed with it, because they didn’t know what B12 was, let alone that you could be deficienct in it.
It’s got nothing to do with ‘big pharma’ trying to persuade doctors to hand out antidepressants instead. Big pharma make nothing from the vast majority of antidepressant sales. Because the vast majority of antidepressant prescriptions are for drugs that have gone off patent. Small companies make tiny profits from making them. They sell them for a few pennies per pill.
It has a lot to do with ignorance. GPs spend half of one afternoon looking at all the vitamin deficiencies, most of which have cool names. They learn that all of those deficiencies can be fixed by giving supplements. They don’t learn that B12 is different from the others.
It has got something to do with money. In the modern NHS, where successive governments have preferred to spend money giving people tax cuts, rather properly funding the health service, everything has been cut so much that the bean counters are looking for anything that can save money. They see people getting an injection every two months and think ‘you don’t need injections for a vitamin deficiency’ and tell GPs to switch people onto tablets.
What can be done to fix the problem? Well it’s not going to get fixed if people try to blame the wrong things.
What needs to be done is that the health professionals need to be educated. The people who make guidelines, that many health professionals follow blindly, need to be persuaded to amend those guidelines to fit individuals and their symptoms, not averages and their numbers.
What needs to be done is exactly what the PAS is trying to do. So give them every bit of help you can.
The problem with the "better diagnosis rates" theory in relation to rising rates of autoimmune disease is: The rise in autoimmune disease rates has been so exponential that correlation just goes out the window. Also autoimmune diseases are a good way to generate a b12 deficiency by side effect even if the original disease isn't technically considered a b12 deficiency itself.
Though we certainly have to concede the still circulating misleading idea amongst many Doctor's that: There can be no b12 deficiency without enlarged red blood cells. It is certainly causing a large amount of the problems b12 deficiency sufferers have with getting diagnosis and treatment.
I'm not sure who you were replying to re anti-depressants; perhaps I missed something? I think that the problem is that GP's are often entrained to jump to a psychatric conclusion whenever a patient presents with difficult to diagnose symptoms that; can often mirror depressive disorders even if the patient is not clinically depressed. I don't usually blame them personally. They have about 10 minutes with the patient and limited access to specialist resources both due to funding restrictions and referral waiting times. Yet the ability to print off and sign an anti-depressant prescription is only about 15 seconds and a few clicks away.
It's a safe option career wise as they can tick-box the symptoms to make them fit the rather easy guidelines for anti-depressant prescribing and funding is never an issue. Try to order lots of very specific tests and prescribe vitamins like b12 or perhaps thyroid testing and replacement therapy and, the primary care trust / clinical comissioning group / General medical council will suddenly get very interested in you and your practice even if no patient has ever complained.
Dr Chandy, Dr Sarah Myhill and the late Dr Gordon Skinner to name a few come to mind.
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