‘The tank’s empty but I can smell petrol so you have 90 days more driving ahead of you’ …..

If this advice were given by a garage we’d know they were kidding –  but a similar instruction is given in the UK to too many B12 deficient patients regarding their treatment.

NICE and BNF Guidelines advocate a maintenance dose for patients with neurological symptoms is one injection every two months. This is very often ignored and a move straight to a three monthly maintenance dose (after a 6 injection loading dose), is the norm. This is based on NO CLINICAL EVIDENCE whatsoever yet it appears to be set in stone.

I have spent quite some time trying to find the research for the bizarre idea that four B12 injections per year as a maintenance dose is ‘optimal treatment’, since this restricted regime harms those who are in dire need of a nutrient their systems are starved of. The term ‘optimal treatment’ is used to describe our quarterly maintenance dose in a series of GP audits which I blogged about earlier this year.
It was decided that district nurses time could be saved by lessening the frequency of B12 injections given, so this was eventually adopted nationally without any care for the patient. Our UK maintenance dose guidelines are based on cash saving exercises.

At the end of this blog post are the replies I have from various agencies; NHS England, Public Health England, Health Select Committee, British National Formulary, NICE, to the question;

“Please can you show me the clinical evidence which states that the three monthly maintenance dosage for B12 deficiency is optimal treatment.”

You will see that everybody addressed passes the buck and thinks that someone else has this elusive information which so many doctors adhere to. The emails take a circular route which, of course, yield no result whatsoever since there is no clinical evidence.

In a letter to my MP, Sir Bruce Keogh of NHS England stated “Most patients respond well to quarterly injections”, but where is his source?

It’s quite obvious that a great many patients do extremely badly on 3 monthly injections. Patients who email me with the subject line; ’Desperate’, ‘please help’ or ‘Am I going mad?’  And the 1000’s of members of online support groups are also testament to this.

A serum B12 level can show as ‘within range’ for weeks or even months after a single B12 injection or even a single oral supplement.  This can fool doctors into thinking there is plenty of B12 circulating and available to draw upon when, in reality, there isn’t any B12 available to the patient.

If you want to understand the complexities of B12 deficiency then this document on the enterohepatic circulation of B12 will help.

This is what Kevin Byrne (author of the above) states –

“The problem arises when you start to believe that the damage accruing from a long term deteriorative process can be fixed with a handful of injections, and when you take serum levels as a direct measure of the functioning of a distant, complex organic process.”

Many clinicians do not understand that;

• When a B12 injection is given, the majority is excreted via the bladder & bowel within 24 hours.
• B12 is water-soluble, non toxic & costs pennies.
• Progression of nerve damage is inevitable in patients who are starved of B12.
• B12 is vital for life, is required to produce healthy red blood cells and for DNA synthesis.

Both patients and clinicians are being led up the garden path;

The vast majority of GP’s are not fully educated on this very common, debilitating condition and they think they are advising patients correctly based on the limited information they were taught.

There are enlightened doctors who know that 3 monthly injections are a tortuous proposition for many patients they see and they treat appropriately by symptoms.

Worryingly there are also doctors who are informed, who want to treat patients appropriately but feel their hands are tied, either by their colleagues or by even more restrictive ’practice guidelines’ which appear to take precedence over National Guidelines. Or, these doctors are terrified of being reported to the GMC for ‘unusual prescribing’, quite bizarre when what we are discussing is a non toxic essential vitamin.

Evidence of this clinical evidence is nowhere to be found, It simply does not exist. It is a myth generated to save time and money and has had the opposite effect, costing the NHS and in turn society, millions if not billions of pounds. This is due to the inevitable misdiagnoses that occur when doctors fail to understand that four injections a year will never be enough to heal damaged nerves in many patients.

Trying to put a forest fire out with a teaspoon of water would be just as futile.

What other group of patients with a serious debilitating condition would be subjected to the same illogical and harmful treatment regime?

Whilst the vast majority of clinicians lack up to date knowledge of B12 deficiency & whilst treatment of this condition remains so illogically and harmfully restrictive, it becomes even more essential for patients to be able to access injectable B12 over the counter in the UK.

Patients don’t want more injections than they need, they just want to be able to function and get on with life. It is time once again, to shine a very bright light on exactly why UK patients are kept chronically ill and unable to work on this ridiculously low frequency, based on no clinical evidence whatsoever.

If you are in the UK, you can help by sharing this information with your MP and by asking them to contact my MP, Nicky Morgan (nicky.morgan.mp@parliament.uk) so that they can work together on this urgent issue.

Many thanks Tracey
www.b12deficiency.info

Emails below;

To: Health Committee <HEALTHCOM@parliament.uk> (Dr Sarah Wollaston)
Subject: Re: Clinical evidence for B12 treatment

Dear Victoria

Thank you for your email and the link. However you misunderstood my question. I am asking for “clinical evidence” not “clinical guidelines”.
Please can you point me in the direction of the clinical evidence that states that a three monthly maintenance dose of a 1ml b12 injection is optimal treatment for B12 deficiency? I recall Sarah stating to one of her constituents that she is aware of this evidence.

Best wishes
Tracey
www.b12deficiency.info

Health Select committee (Dr Sarah Wollaston)

<HEALTHCOM@parliament.uk> wrote:

Dear Tracey

I have asked Sarah’s office but unfortunately between us all we can’t track this information, you will need to contact NHS England/Department of Health.

Sorry I couldn’t help.

Best wishes

Victoria

Public Health England;

Hi

Thanks for your email to Public Health England. This falls outside our remit, however we are unsure who you should approach. It might be something NHS England can help you with.

Regards

PHE Enquiries.

NHS England:

Dear Tracey

Thank you for your email of 8 August within which you requested information about the clinical evidence regarding the two and three monthly maintenance doses for B12 deficiency.

NHS England is unable to advise regarding this matter and it is recommended you contact National Institute for health and Care Excellence. Contact details are available at: https://www.nice.org.uk/guidance
Further information regarding B!2 can be reviewed at: https://www.nice.org.uk/search?q=b12

I am sorry I am unable to assist you further and trust the information above is sufficient to progress your enquiry.

NICE;
(Please note I cut a whole load of this enormous email out to save you falling asleep – It was the text from the page highlighted)

Dear Tracey

Thank you for contacting NICE.

NICE produces a range of guidance and information products, including clinical guidelines, which are recommendations on how healthcare and other professionals should care for people with specific conditions. Our clinical guideline topics are referred to us by the NHS England. I can confirm that we have not been asked to develop a guideline relating to the care of people with B12 deficiency.

I believe that the resource that you have located is clinical knowledge summary (CKS) on Anaemia – B12 and folate deficiency. CKS are developed by an external company and we work with the publisher to make them available on the NICE Evidence Services website, as a source of advice for health professionals working in primary care, while they may refer to NICE guidance (if there is any that is relevant), they also use many other sources. It is important to note that they do not constitute NICE guidance.

The evidence behind the recommendations in the CKS is presented underneath the recommendations under a subheading ‘Basis for recommendation’. I hope this is helpful.

Kind regards
Janet

(I didn’t find it helpful obviously, they point towards lots of journals who don’t have the evidence we require and to the BNF; here is their response below; )

BNF British National Formulary

Thank you for your email to BNF Publications.

Unfortunately we are unable to access our archives to check what evidence base was used to determine the 3 monthly dosage of hydroxocobalamin.

BNF content will be reviewed in line with the SPCs for future updates of the BNF.

Kind regards,

BNF Publications

You will see from my previous blog on this subject that I also asked all the Marketing Authorisation holders  who provide injectable B12 in the UK where their evidence for the three monthly maintenance dose came from and each of them drew a blank too.

http://www.b12deficiency.info/blog/2016/02/16/uk-b12-deficient-patients-paltry-3-monthly-maintenance-dose-of-b12-injections-is-based-on-cash-not-care/

 

Many B12 deficient patients would prefer ‘a dogs life’ when it comes to treatment

dooby-b12-text-version

Vets have a greater knowledge of B12 deficiency than the average GP.

Jasper wouldn’t be misdiagnosed with fibromyalgia, CFS, MS, or bipolar (etc), in place of B12 deficiency.

He would not be given antidepressants for B12 deficiency induced depression.

He wouldn’t be considered to be a lazy hypochondriac.

He would have all of his symptoms taken into account and his improvement would be monitored.

He would not have to cry and plead for his B12 injections, or involve his MP. Shouldn’t humans be treated with the same level of respect and care?

I continue to work hard on the petition and I need some help please;-If you have written to your MP about your deficiency or the OTC petition https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

please could you let me know their name in order that we can get all our MP’s to work together.

My MP has promised to help all she can, but there is strength in numbers so please get in touch either at;

www.facebook.com/b12deficiency.info?fref=nf
or tracey@b12deficiency.info.For more info/research see below;-http://vetmed.tamu.edu/gilab/research/cobalamin-informationhttp://www.ncbi.nlm.nih.gov/pubmed/23535754/
J Am Anim Hosp Assoc. 2013 May-Jun;49(3):197-203. doi: 10.5326/JAAHA-MS-5867. Epub 2013 Mar 27. Clinical and laboratory findings in border collies with presumed hereditary juvenile cobalamin deficiency.
Lutz S1, Sewell AC, Reusch CE, Kook PH.http://www.ncbi.nlm.nih.gov/pubmed/1848001
Pediatr Res. 1991 Jan;29(1):24-31.
Inherited selective intestinal cobalamin malabsorption and cobalamin deficiency in dogs.
Fyfe JC1, Giger U, Hall CA, Jezyk PF, Klumpp SA, Levine JS, Patterson DF.

Reply to my email request for information;-

Dear Tracey,

Thank you for your email question. As you know our understanding of the role of vitamin B12 in dogs is far from complete, but there are several clinical diseases in which we know deficiency may occur. During our undergraduate Course, students will be taught about vitamin B12 in several modules eg nutrition and gastroenterology, as well as on clinical rotations when they see cases in practice.

If deficiency is present recommendations for dose rates vary but usually weekly injections are given for several weeks.

I hope this is helpful

BVetMed CertVR CertSAO FRCVS
Associate Professor in Small Animal Clinical Practice

The pernicious ignorance of B12 deficiency in patients with poor mental health.

Despite the general misconception that B12 deficiency only affects women over 60, this condition does not discriminate. It is those who train our health care professionals and consequently our health care professionals who do. The neuropsychiatric symptoms of B12 deficiency are many and as with all symptoms they can manifest at any age and in either sex.
These include –

• The unborn child
• Babies
• Children
• New mothers
• The middle aged
• The elderly

It appears that very few doctors understand the need to rule out this debilitating neurological disorder once a mental health condition is diagnosed. Of course there are many reasons for poor mental health but to ignore nutritional deficiencies is ridiculous.

One of the most common presenting symptoms of B12 deficiency is depression and yet the chances of a doctor exploring this symptom further to see if there might be a physical cause appears to be very slim.

How many children are incorrectly diagnosed with Bipolar, psychosis, depression when B12 deficiency is the root cause?
How many undiagnosed B12 deficient mothers find themselves devastated by post natal depression following nitrous oxide administration during labour?
How many cases of ‘early onset Alzheimer’s’ remain untested for this easy to treat deficiency?
How many newly diagnosed dementia patients have been taking metformin, or acid suppressants such as Omeprazole?
How many patients live in total confusion when all they lack is the ability to absorb vitamin B12?
How many stroke victims struggling physically and mentally because it never occurred to the clinicians to test for low B12?
How many students unable to complete their studies?
How many lives lost through suicide?
How many careers ruined?
How many lost livelihoods?
How many families broken?
How much money wasted on psychiatric drugs when a vital nutrient is the solution?
How many undiagnosed prisoners are ‘detained at Her Majesty’s pleasure’ for actions and behaviour induced by low B12?
How many patients hospitalised with eating disorders remain undiagnosed with B12 deficiency?
How many patients tested but by clinicians who fail to understand that the B12 serum test is inaccurate?
How many patients rattle with numerous antidepressants given in mega doses due to their reduced efficacy in B12 deficient patients?
The information below is taken from the ‘Fundamental Statistics on Mental Health 2007’  

All these statements and statistics have a potential relationship to B12 deficiency and we can only assume that these figures are perhaps even worse now…….

The Fundamental Facts 2007: The Latest Facts and Figures on Mental Health
http://www.mentalhealth.org.uk/content/assets/PDF/publications/fundamental_facts_2007.pdf?view=Standard

How many people experience mental health problems?
• The Office for National Statistics Psychiatric Morbidity report found that in any one year 1 in 4 British adults experience at least one mental disorder, and 1 in 6 experiences this at any given time.

• It is estimated that approximately 450 million people worldwide have a mental health problem.
• 1 in 4 families worldwide is likely to have at least one member with a behavioural or mental disorder.
• The World Health Organisation forecasts that by 2020 depression will be the second leading contributor to the global burden of disease.

 Suicide and history of using mental health services
• 42% of people who took their own lives in England and Wales were diagnosed with either a depressive illness or bi-polar disorder, and 20% had schizophrenia or a related disorder. 

Postnatal depression
• Post-natal depression, also known as post partum depression, is believed to affect between 8 and 15% of women. Post-natal depression is not the same as the ‘baby blues’ which are very common, but last only a few days.

Dementia
• Dementia affects 5% of people over the age of 65 and 20% of those over 80. About 700,000 people in the UK have dementia (1.2% of the population) at any one time.
• About 60% of dementia cases are caused by Alzheimer’s disease.
• About a fifth of cases of dementia are related to strokes or insufficient blood flow to the brain, these cases being known as vascular dementia.

Children and young people 
• The British Medical Association estimates that at any point in time up to 45,000 young people under the age of 16 are experiencing a severe mental health disorder, and approximately 1.1 million children under the age of 18 would benefit from specialist mental health services.


Older people 
• Depression affects 1 in 5 people over the age of 65 living in the community and 2 in 5 living in care homes. However, it is likely that only a small proportion of older people with depression are in contact with their GP or mental health services. 
• An estimated 70% of new cases of depression in older people are related to poor physical health.

The prison population
• 72% of male and 70% of female sentenced prisoners have at least one mental disorder and 1 in 5 prisoners has four major mental health disorders. 

People with poor physical health are at higher risk of experiencing common mental health problems, and people with mental health problems are more likely to have poor physical health. 
• Depression affects 27% of people with diabetes, 29% of people with hypertension, 31% of people who have had a stroke, 33% of cancer patients and 44% of people with HIV/AIDS.
• People who experience persistent pain are four times as likely to have an anxiety or depressive disorder as the general population.




Primary care
• Approximately 30% of all GP consultations are related to a mental health problem.
• On average, a person with severe mental health problems has 13 to 14 consultations per year with their GP.




Hospital provision
• The NHS spent about £575 million on acute psychiatric in-patient hospital care in 2005/06,188 about 68% of its budget for clinical mental health services.




Treatment and coping
• According to an online survey by the Mental Health Foundation, of those visiting their GP with depression, 60% were prescribed anti-depressants, 42% were offered counselling and 2% were offered exercise therapy. 




Medication

• In 2004, GPs wrote a total of 63.9 million drug prescriptions for mental health problems in England, representing 9.3% of the total prescription by volume.
• Approximately 2 million people of working age in Britain are currently taking psychiatric drugs, most prescribed by their GPs.




 

•••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••

Family doctors in England are to be paid £55 for each patient they diagnose with dementia, NHS bosses say.   (http://www.bbc.co.uk/news/health-29718618)

If we gave GP’s just £1 to test ALL mental health patients for B12 deficiency and then another £1 to treat that Patient properly the cost savings could be phenomenal, not just to the NHS but to society as a whole. If only 10% of all the above statistics were found to be B12 deficient it would have a profoundly positive impact on NHS resources.

If you or anyone you know suffers with a mental illness, please have look at this list which is just the neuropsychiatric portion of the common B12 deficiency symptoms. You may be surprised and relieved to find that B12 injections could be the answer to restoring your own or a loved ones health.

• Confusion/disorientation
• Psychosis
• Post natal depression
• Hallucinations
• Memory loss
• Delusion
• Depression
• Suicidal ideation
• Mania
• Anxiety
• Paranoia
• Irritability
• Apathy
• Personality changes
• Inappropriate sexual behaviour
• Violent/aggressive behaviour
• Schizophrenic symptoms
• Sleep disturbances
• Insomnia
• Changes in taste, smell, vision, and sensory/motor function which can be mistaken for psychiatric problems

For more information please visit  www.b12deficiency.info/b12-and-mental-health/

Every part of society is affected by mental illness, and every part of society is affected by B12 deficiency. Our health care professionals need to keep this in mind, from midwives, to paediatrician’s, oncologists to psychiatrists. All medical disciplines need to be made aware of the facts.

Even those psychiatric patients who are known to be B12 deficient may still remain very unwell due to the high level of under treatment for this condition. Just four injections per year are not enough to repair those damaged nerves. Far more B12 is needed for this important job.
Unfortunately your doctor may be resistant to your request for testing for B12 deficiency.

Over the past couple of years I have been met with the following statements, from GP’s and psychiatrists;

‘They have no symptoms so it would be a waste of NHS funds to test for low B12 ’.
‘B12 deficiency does not affect mental health’.
‘Tremors and tinnitus are not cause by low B12’
‘They already have a diagnosis of Alzheimer’s and poor mental health runs in the family’.

It appears that once you have a diagnosis of mental illness you may be effectively tidied away and forgotten about.

And if you don’t have a mental health diagnosis your doctor might be keener to find one for you,  than to give you the vitamin you desperately need.

I’ll leave you with the letter I was sent following my request for more B12 injections.

letter-1-14.08.28

 

 

‘Please don’t trust me – I am a doctor with a fundamental lack of knowledge of B12 deficiency, sadly my ignorance will harm you!’

Sadly the letter below is typical of those sent out to B12 deficient patients, full of incorrect information.
letter Y
This shockingly ignorant doctor, who has spent a fair old time at medical school still hasn’t grasped the basics. He states that ‘The blood tests that we have taken to work out why you had a low B12 have shown that the B12 has come back up to normal as has the folic acid. Therefore you can stop both of these.’
The doctor came to this bizarre conclusion even though the the patient was given a B12 injection 2 days before the blood was taken for the tests. This means that OBVIOUSLY it will show a much higher level of B12 than the patient had upon diagnosis. The doctor sadly doesn’t consider that this is a foolish statement and forgets that his patient will require injections for life.
It is all very simple in his world.
He goes on to say that ‘ …..there is a possibility that the low B12 was possibly caused by coeliac disease…..’
And so in his mind, the patients B12 deficiency is now miraculously cured. This would of course be akin to pumping up a punctured tyre and declaring it fixed.
B12 serum levels mean just about nothing once a patient is undergoing treatment with B12 injections. It is pointless to continually waste NHS funds to keep re checking B12 levels of a deficient patient just so that it can be used as an excuse to stop injections that the patient desperately needs.  It would however be appropriate to check once in a new patient to see if they are responding to B12 injections but this is all that’s required.
This doctor correctly identifies the fact that the body may not be able to absorb ‘certain nutrients’ if they have coeliac disease but totally misses the point that the patient has autoimmune pernicious anaemia and it won’t go away just because the doctor has found another autoimmune condition.
Autoimmune conditions like to keep each other company in certain patients.
The doctor kindly states that if the patient has any questions to contact him –
Pertinent questions for him might be;
• When are you going to reinstate the patient’s urgent injections?
• Will you treat the patient as per NICE and BNF Guidelines?
• Will you check the patient for other nutrient deficiencies and treat them properly?
And finally – During your medical training, how much time was spent on the complexities of B12 deficiency and  pernicious anaemia?
If you think you may be deficient please visit –

There are many faces of Vitamin B12 deficiency……….

b12 poster final

Please click to download, print, tweet or share this poster 

Raising awareness – how YOU can help

If viewed from the web address above this poster has dynamic links behind each image which lead to further information and journals for each age group.

www.b12deficiency.info/what-to-do-next.html

Please consider signing and sharing our petition – you will be helping to save lives
http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

Neurological symptoms in B12 deficiency are routinely ignored.

I do acknowledge that there are some of us with doctors who know exactly how to treat B12 deficiency, but evidence shows that we are not all that lucky.

Most of us with this condition suffer neurological symptoms. Our problem is that many doctors don’t recognise our symptoms as such and consequently they continue to worsen. The NICE and BNF Guidelines state that if neurological symptoms are present that B12 injections should be given every other day until the symptoms stop improving.

It’s also important to note that many of us are ‘within range’ on a serum B12 test result, but still heavily symptomatic.

When I was diagnosed with Vitamin B12 deficiency my doctor wasn’t really interested in my symptoms, they weren’t discussed and I don’t think they were even noted. I was given my loading dose injections every other day for two weeks and then I was supposed to manage on one injection every three months.

I couldn’t.

I have neurological symptoms. My myelin sheath, the protection for my nerves, has been nibbled away.

My memory was terrible, my bladder let me down, my tongue was sore and swollen, my vision was blurred, my bowel couldn’t muster up the strength to work, my neck, back, and toes burned with pain, and I felt anxious, I could go on and on. I thought I might be one of those people who end up in the news, with ‘early onset’ Alzheimer’s.

I have an injection every week now, but I have fought tooth and nail for this. I have never been treated as per the guidelines regarding neurological symptoms and I am not alone. I have cried with frustration during my GP appointments. I have asked my doctor why she thinks her memory is more important to her than mine is to me. I have been enraged by letters sent to me from experts I have never met, telling me I need antidepressants and psychotherapy instead of this 55 pence injection. Where is the sense in this? I know that antidepressants are not going to heal my damaged nerves – it is the little red B12 vial, cheaper than a chocolate bar, which does this job, perfectly.

B12 deficient patients are routinely under treated, neglected and ignored. It’s clear that we must all suffer some degree of nerve damage, with different sets of neurological problems and yet for some bizarre reason we are largely, all treated the same – poorly, and sparsely. We are all unique, we all have different B12 requirements. Many of us suffer returning symptoms within days of our injections, some of us can go longer, some of us can’t. I know members of the support group I belong to who are ecstatic when their doctors agree to give them their much needed injections every 10 weeks rather than every 12 but we all know that this frequency is enough to keep to us alive but not to repair the damage to our nerves. We need our doctors to give us a chance for optimum healing by listening to us, by taking our health seriously, by not filling us with chemicals we don’t need, but by giving us an essential vitamin.

A newly diagnosed patient should be given B12 loading doses over two weeks and following these, the patient, who suffers neurological symptoms, may be euphoric at being able to get out of bed for the first time in months or even years. This same patient who may feel a zest for life in place of deep depression, could then be told that they now only require one of these life saving, vital, water soluble injections, every three months. This incorrect statement is rolled out to countless devastated and desperate patients with the added untruth, that too much B12 can be harmful. There is barely any recognition of our symptoms, except for, it seems the depression we sink into when our lifeline is cut. Our request for more frequent injections falls on deaf ears but we are freely offered antidepressants as an antidote for our despair.

The depression induced by lack of B12 has one cure alone, tragically this cure for most, is rationed to one tiny vial only four times a year. This is madness.

B12 deficient patients should also have had their folate and ferritin levels checked. If these levels are too low our B12 can have a pointless journey through our systems and leave us without improvement.

Some doctors feel that our neurological symptoms are not B12 deficiency at all and so will continue to test, scan, prod and poke saying it is important they don’t miss anything ‘more serious’. We don’t mind this process as long as you continue with our essential injections, they can do only good. Vitamin B12 stops us deteriorating, stop our brains from shrinking, it don’t interfere with any other drugs and there is no known toxicity.

We need the treatment that the NICE Guidelines and BNF guidelines 9.1.2. allows us, injections every other day until our symptoms stop improving. There is no restriction on this – and there shouldn’t be.  Nerve damage takes a long time to heal, ask a neurologist – but not these two jokers, see letters 3 and 5 http://b12deficiency.info/letters.html.

Many of us with this condition have soaked ourselves in research in order to be armed with information to keep ourselves alive and well. Numerous occasions arise when this information we collect needs to be regurgitated for our doctors. We remind them of the guidelines repeatedly due to the simple fact that our neurological symptoms are continually misunderstood or ignored.

We don’t understand the confusion our health professionals suffer with the treatment of B12 deficiency because it is SO SIMPLE. Those of us with this condition are fully aware that it affects all body systems, that B12 deficiency affects our brains. It attacks both our central nervous and peripheral nervous systems and that these nerves run throughout our bodies from head to toe the damage wreaking havoc with our daily lives.

Yes it is this serious, but tragically our doctors feel we are making a fuss if we want –

to stay awake for more than three hours a day,

to move without pain,

to walk without wobbling,

to conceive without IVF,

to have a tongue that fits,

to empty our bowels from time to time,

to speak without forgetting,

to hear without constant ringing,

to see without blurring,

to feel calm and relaxed,

to hold down a job,

to have a day without tears,

to remember our loved ones names,

to feel like death isn’t a better option. . . . . . . . . . .

Is this really asking too much?

The guidelines regarding neurological symptoms are plain to see, so all we ask is that these are followed.

Our doctors take the Hippocratic Oath, it states “And I will use treatments for the benefit of the ill in accordance with my ability and my judgment, but from what is to their harm and injustice I will keep them.”

What happens every day in reality, is criminal.

Please consider signing and sharing our petition – you will be helping to save lives

Newly diagnosed? Please visit – http://b12deficiency.info/what-to-do-next.html

Raising awareness – How YOU can help

To join Pat Kornic’s Life saving support group

NICE Guidelines

BNF registration – http://www.bnf.org/bnf/registration.htm

See Andrea McArthur’s Petition.

Cardiff and Vale NHS Trust we have a HUGE problem! Lab range for serum B12 130ng/L – 900ng/L

For some bizarre reason, if you happen to be unlucky enough to be under this South Wales NHS Trust and you are deficient in B12 you might have Hell’s own job ever being diagnosed.

Their shockingly low, lower reference level of 130 ng/L for the serum B12 test has potential to make life very dangerous for patients under this Trust.

We already know the  serum B12 test is seriously flawed – http://www.ukneqas-haematinics.org.uk/content/PageServer.asp?S=581567449&C=1252&Type=G&AID=2 but this low level is beyond belief.

How can GP’s in this area diagnose and treat patients who are severely B12 deficient when the lab they use has such appallingly low reference ranges?

In 2006 the lab range at this Trust was 170 ng/L -900 ng/L, still very low but not as shocking as this. In their infinite wisdom, someone thought it would be a great idea to lower it by another 40 points!

Why isn’t there a standard assay Kit used?  Why isn’t the lower reference limit, worldwide, at least 500 ng/L?

GP’s in this area need to act rectify this, they must treat the symptoms of B12 deficiency and take the serum test results with a bucket of salt.  It would of course be pertinent to suggest they recall any patients with a B12 serum test result under 500 and reassess them all. Tragically though, ‘pigs might fly’ before this happens.

The region covered by this Trust is being astoundingly mislead, leaving many patients at a loss and continuing a futile search for the reason for their depression, cognitive decline, failing eyesight, infertility, pain and exhaustion.

This deficiency is an epidemic but it is must be reaching epic proportions here.

Mental health units must surely be fit to burst.

How many misdiagnoses of MS, ME, CFS, Autism, Post natal depression, Bipolar, dementia, etc are there here?

How many ‘early onset’ Alzheimer’s cases are there?

How many patients are housebound and isolated?

How many patients are unable to walk unaided?

How many are unable to look after themselves or their children?

How many are no longer able to work?

How many babies are born with neural tube defects?

How many miscarriages?

Below you will see a result of 108 ng/L. This patient is clearly on their knees in deficiency stakes, however they were unlucky enough to see a doctor who didn’t think it necessary to treat this level and made them wait to be retested three weeks later.  The new level unfortunately was recorded at 138 ng/L so BINGO no longer deficient under Cardiff and Vale Trust!

This patient’s symptoms include – persistent daily nausea, daily headaches, palpitations, fatigue, tingling in fingers, inability to hold head up, poor concentration, inability to finish sentences. This patient also had a positive intrinsic factor test.  Finally after some strenuous persuading from a desperate patient, the doctor reluctantly agreed to give this lone parent loading doses despite being told they weren’t actually deficient and that all the symptoms could be attributed to STRESS.

Cardiff and Vale NHS Trust your lab is failing patients and costing the NHS and society a fortune!

If you chose to make medicine your career because you wanted to save lives, then please ignore B12 serum test results in those who are symptomatic and please start listening to your patients.

Please visit www.b12deficiency.info

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

Please consider signing and sharing our petition – you will be helping to save lives
http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

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Imagine being sectioned for a vitamin B12 deficiency…….

Imagine feeling that taking your own life is preferable to fighting your doctor for your right to this essential vitamin.

Imagine being tested for B12 deficiency and even though the serum test shows you are deficient, your doctor denies treatment because she doesn’t believe that your mind can be affected.

Imagine a newly qualified doctor telling you to eat more broccoli to build your supplies of B12.

Imagine pleading for injections for your severely B12 deficient child only to be ignored, all this whilst the doctor calls social services to accuse you of starving your child.

Imagine a helicopter police hunt for a desperately deficient OAP whose doctor thinks that three 50mcg oral cyanocobalamin B12 tablets per day will correct their severe deficiency.

Imagine your child being given a diagnosis of autism only to find later that B12 deficiency was the correct diagnosis.

Imagine being bed bound and unable to look after your children or yourself because your doctor thinks B12 is a placebo and will not allow B12 injections more frequently than every three months.

Imagine studying hard for a career only to find your undiagnosed B12 deficiency makes it impossible to work or contribute to society in any way.

Imagine being treated for cervical cancer when B12 deficiency caused your abnormal pap smears.

Imagine becoming anorexic and being admitted to a mental health ward where the doctors involved in your care don’t understand that anorexia is a symptom of B12 deficiency.

Imagine being diagnosed with post natal depression after enduring a long labour with B12 depleting ‘gas and air’ and only being treated with drugs instead of the vitamin her body has been starved of.

Imagine being labelled as a lazy hypochondriac when you haven’t the energy to raise your head from your pillow because your doctor says a three monthly injection is adequate treatment.

Imagine being one point above a B12 serum test’s lowest range, with screaming neurological symptoms and being denied treatment because a doctor says your level is ‘normal’.

Imagine being unable to remember the names of your loved ones, how to cook, how to read music, how to drive your car.

Imagine being tested and probed for other ‘more serious’ illnesses in your quest for a vitamin you know you need but medical professionals simply don’t.

Imagine being fed a cocktail of antipsychotics, antidepressants, antiepileptics, lithium, and pain killers, when all you really need is a 55p B12 injection every other day until your myriad of symptoms stop improving.

Imagine a night out partaking of some supposedly, harmless ‘hippy crack’ (nitrous oxide), and later  finding that you can’t walk,and that your doctor never puts 2 and 2 together.

Imagine being misdiagnosed with MS due to your doctors ignorance of B12 deficiency.

Imagine knowing that other countries allow their citizens to buy this essential injectable vitamin over the counter but in the UK it is restricted and rationed.

Imagine being diagnosed with Alzheimer’s, or dementia in your 20’s or 30’s when it’s simply  vitamin B12 deficiency causing your appalling memory problems.

Imagine having repeated miscarriages and rounds of unsuccessful IVF only to find that £10’s worth of vitamin B12 injections could have you on the road to natural conception.

Imagine your healthy baby becoming floppy, unresponsive and failing to thrive but never finding that elusive doctor with a comprehensive knowledge of B12.

Imagine your child being arrested when their anger and aggression is due to desperate under treatment for B12 deficiency.

Imagine finally giving up after you have fought for help from your doctor, only to be continually ignored.

Imagine knowing far more about B12 deficiency than your GP or any of the ’specialists’ your doctor has referred you to.

Imagine an ignorant consultant calling Social Services to accuse you, a loving parent, of causing your child’s malnutrition when you have a family history of B12 deficiency.

Imagine being mistakenly prescribed acid suppressants when your stomach acid is already too low to absorb B12 and then finding that eventually your legs fail you.

Imagine being diagnosed with pernicious anaemia and knowing you will need treatment for life but having an ignorant doctor stop your injections when the serum B12 level is ‘within range’.

Imagine having repeated cardiac arrests, prolonged stays in mental health units and  when you finally work out that you are B12 deficient, being denied treatment.

Imagine a life with this condition, when your family and friends don’t understand your many symptoms and who tell you ‘the doctor must know best’.

Imagine the savings to the NHS if they woke up to B12 deficiency.

All the above have happened and sadly may continue to happen until something changes.

Please consider signing and sharing our petitions – you will be helping to save lives

https://www.change.org/p/jane-ellison-mp-parliament-uk-add-testing-for-b12-deficiency-to-a-full-blood-count-help-to-stop-permanent-disablement

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

Please visit http://www.b12deficiency.info

Raising awareness – How you can help