A serum B12 level can’t tell you how a patient is feeling, only the patient can, but why is no one listening?

Is your doctor allowing you to sink or swim?

How are you feeling? Are your symptoms improving? Do you need more frequent B12 injections……? These questions are very rarely asked of B12 deficient patients regarding their treatment. Too many patients remain ‘seen’ but not heard. Never heard.

Why has the medical establishment become so averse to listening to B12 deficient patients?  To treating symptoms and to acknowledging this fundamental nutritional requirement?  Why are we not offered the same listening ear as those with other conditions might be?

The patient is ALWAYS the expert on how they are feeling, not some serum B12 level or any maintenance guidelines which bear no relationship to the patient experience.

lifeboy-b12

Loss of a great relationship  

Any visit to the doctors can be an ordeal. You may be feeling, vulnerable, tearful, in pain, stressed, anxious and not wanting to waste the doctor’s time. But, the incredibly healing benefit of just ten minutes of really being heard, experiencing kindness and compassion and having a plan of action, is profound. We leave knowing our doctor is trying to help us. That ten minutes being reassured and cared for creates a phenomenal level of trust.

B12 deficient patients, in many cases, experience a completely different relationship with their doctor when requesting an increased frequency of B12 injections, finding that a couple of weeks after their injection their debilitating symptoms are back with a vengeance.

The very same Doctor who helped them through rough times, cared for them through pregnancy or trauma can become distant, defensive, unfeeling and even angry.  It’s as if an invisible wall is built,  eye contact is limited, and communication is almost strangulated. The usual empathy may be replaced by flippant, incorrect comments about B12 being a placebo, that B12 deficiency is ‘over diagnosed’ that people want too much, get addicted to it and that there is no evidence to suggest that it actually makes a difference! 

There’s an inability on the part of some GP’s to demonstrate compassion or understanding for a patient who is struggling to function on three monthly injections. The current situation means that some patients are able to function for only 8 weeks out of 52.  Many GP’s are refusing to treat symptoms, whilst concern with B12 serum blood levels takes precedence over common sense. Ignoring how the patient feels can lead to feelings of confusion, anger, desperation, and fear. What are they supposed to do?

Patient’s who are in pain, exhausted and confused need more B12, not less – but this fact is not understood by those who should be caring for us.

This ‘new’ attitude from the GP may cause fractures in, or even a complete death of their previous good relationship. For those patients who feel they’ve upset their doctor by asking for more B12 or who fail to articulate what they need it may mean that they will try to struggle on alone. This is a shocking and intolerable situation for a patient who previously had an excellent relationship with someone they completely trusted to care for them.

What usually happens in the UK ….

In the main GPs prescribe loading doses (6 injections over two weeks) and then automatically place patients onto three monthly injection regime regardless of the severity of their symptoms. This is very often done without discussion with the patient – in fact without any kind of consultation whatsoever. It might be a nurse who delivers this information and who sticks rigidly to the exact date three months later for the next injection. It is not uncommon for patients who try to have their injection a couple of days early only to be turned away distraught.

This situation can leave the patient bewildered about why their inexpensive injections are rationed, knowing their lack can cause widespread, permanent damage. This condition is so simple and easy to treat but B12 is withheld due to lack of education.

Patients restricted to 3 monthly injections are commonly offered strong painkillers, Gabapentin, amitriptyline, and other antidepressants, all manner of symptom modifying drugs in place of the vitamin needed to repair their nerves.  There’s something seriously wrong when a GP insists on exploring dementia in a symptomatic patient in their 40’s, rather than treating a B12 level which is just within range.

Retesting serum levels

Once a patient is being treated with B12 injections, it does make sense to check the serum B12 level in the beginning to confirm that the patient is responding to treatment. If there is a good response then no further testing is required. Continual retesting of serum levels prior to an injection (and in some cases just a few days after) is a total waste of time and money and it’s clear that some GP’s are mistakenly using a ‘within range’ result as a reason to stop B12 injections.

The sole reliance on B12 serum levels to decide whether a patient is well or not is entirely illogical given that many patients with a B12 level up in the 1000’s may still be experiencing incredibly painful and debilitating symptoms. They may be suffering from a failing memory, an inability to walk, to stay awake and terrible anxiety.

A high serum B12 level post injection is not showing any toxicity, it is also no indication of the level of nerve repair but repeatedly patients are told:

‘your levels are too high’,
‘we need to stop your injections until they come back down’
‘you no longer need B12……..’

There is a genetic problem which is thankfully highlighted by the NHS – ‘functional B12 deficiency,’  it would be helpful if our GP’s were all made aware of this;

http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Causes.aspx 

‘Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood. This can occur due to a problem known as functional vitamin B12 deficiency – where there is a problem with the proteins that help transport vitamin B12 between cells. This results in neurological complications involving the spinal cord’.

B12 is a water-soluble vitamin, the vast majority of the injection is excreted via the bowel and bladder within 24 hours. B12 has to be replaced frequently in order to aid recovery of the myelin sheath. Serum levels can remain high for up to four months, this does not mean there is an accessible reservoir of B12 sloshing around the body.

If your GP or nurse continually suggest retesting your B12 levels, ask why? And feel free to refuse unless there is any clinical need. You will be saving your blood and your time and that of your practice too.

• A very high serum B12 level without any supplementation obviously requires investigation and I often wonder if this is where our GP’s are getting mixed up?

Superior treatment for other conditions, a stark contrast 

If you are a diabetic patient, the overwhelming difference in the level of care is plain to see. You will be checked, monitored, consulted. You’ll have regular retinopathy and foot checks. You may be assigned a specialist diabetic nurse and you will be asked how you feel.

You will not have restricted medication, you will be taught and trusted to self inject, and you may even be sent on courses to learn about your condition.

In stark contrast, the majority of B12 deficient patients are discriminated against whilst requiring exactly the same care. All clinicians need to grasp the fact that B12 deficiency is a real and serious condition.

One size treatment cannot possibly fit all

As many of us know and feel keenly, four injections per year cannot correct the body’s starvation of B12, just as only four buckets of water a year wouldn’t help a tree in drought and only four breaths of air wouldn’t help a deep sea diver. One size cannot possibly fit all for many medical treatments.

Reports of widespread pain, poor memory, poor mental health, balance problems, deafening tinnitus, fatigue, and incontinence are totally ignored as if the patient is totally mistaken about the state of their own health. If they happen to have existing diagnoses of fibromyalgia, depression, CFS, diabetes (etc) or they’re menopausal or even a new mum – their symptoms may be attributed to these conditions instead of being recognised as under treatment of B12 deficiency.

B12 injections are safe, life saving, non-toxic and inexpensive. There is no clinical evidence for this restricted regime, it is entirely based upon cost saving audits.

Bizarre letters stop B12 treatment

You can see the situation which affects so many patients from this letter below. These letters which stop vital B12 treatment, are randomly sent out and are expected to be met with compliance despite the fact that without any solid evidence or consultation, it has been decided the patient can miraculously absorb and utilise B12.

tracey letter

The statement “Evidence has come to light that in many cases B12 injections are given too easily, or are inadvertently continued after the loading dose injections.” is ludicrous.

I hope that recipients of these letters ask to see the source of this ‘evidence’ and I wonder what it is. The idea that B12 injections are ‘given too easily’ is a bizarre comment given that so many patients probably feel that completing the Krypton Factor, running ten miles through quicksand whilst wearing high heels two sizes too small, might be an easier challenge than ‘qualifying’ for an essential vitamin injection.

There may be some odd formula for sending out these letters – there is no clue as to why this practice have decided the patients can now absorb B12, what test they used. Perhaps a mistaken reliance upon post injection serum B12 levels to determine that patients have enough B12 and are now ‘cured’ – perhaps even picking names out of a hat?

They state “we need to prove that people cannot absorb the carrier across the stomach membrane.”  The sentence itself doesn’t make sense. What is the ‘carrier’? Do they really believe that by simply telling the patient “You are one of a cohort of patients who have been tested and should be able to absorb B12” the job is done?  They are placing the onus on the patient to prove they can’t absorb B12 without any discussion whatsoever.

There seems to be a movement towards only treating patients who are confirmed to have pernicious anaemia, (this may be what this letter is about). This is totally ridiculous given the many causes for B12 deficiency. Each is serious and each requires treatment by injection unless the deficiency is of proven dietary lack. The reality is that the test for pernicious anaemia (Intrinsic Factor antibody) has low sensitivity resulting in many false negatives. This information escapes too many GP’s.

The sad fact is that some who receive these letters will believe what is written – or may not have the strength to fight for their health.

Deterioration caused by B12 deficiency is slow and insidious, it takes a while to repair the fatty coating of the nerves (myelin sheath). Six injections over two weeks cannot possibly reverse all the damage in every patient even though we all wish they could.

Me and millions of others would be ecstatic to find that suddenly we really could absorb B12 simply because we received a letter saying so – but this letter and all the others like it are complete poppycock, not to mention harmful. As usual in B12 deficiency, the PATIENT IS NEVER CONSULTED, everything is decided without their input.

Oral supplementation for patients who cannot absorb B12 from food would be a futile exercise. We urgently need our clinicians to understand that this can lead to permanent neurological damage, raising serum levels but allowing deterioration to continue.

This letter states that: “If you are taking folic acid then it’s important to take vitamin B supplement to prevent damage” the author is apparently ignorant of the harm that will follow without B12 injections.

The one sensible statement included in the letter is that vitamin B12 “is water soluble and therefore not dangerous to take in excess,” very refreshing.

It is vital that all primary care doctors, nurses ,midwives and specialists in all areas of medicine are educated about the seriousness of B12 deficiency and the fundamentals of nutrition.

If our doctors are unable to feel that they can take clinical responsibility for frequent B12 injections (even though this is what is stated in both BNF and NICE Guidelines) then it becomes even more urgent that UK patients are able to buy injectable B12 over the counter in order to look after their own health.

Isolation and hopelessness

There are many things that patients who are B12 deficient can’t understand about the way they are treated once they become diagnosed with vitamin B12 deficiency.

Of course some doctors do treat their patients correctly and fully support individualised treatment. For the rest, B12 is restricted and the battle for treatment begins in those who have the strength and/or the support of loved ones.

Some patients believe their GP is correct when told that too much B12 would be harmful.  Others feel forced to accept the situation because their partner or family member insists the GP must know best, finding themselves totally isolated and without hope.

Nobody wants to have to fight for health especially when they are on their knees, mentally and physically.

If you are a patient who needs more B12 and face the challenge of requesting this, taking somebody with you to the doctors for support can be invaluable. Just a squeeze of a hand and reassurance that you are not alone can make the world of difference when trying to communicate how you feel in pleading your case. Writing down what you need to say will help you to remember all your points. The NHS constitution may be a useful tool to help in accessing better treatment for UK readers.

The very least a patient can expect is to be listened to and taken seriously. Ensuring that this happens would make the job of the GP easier and their overall workload lighter, saving the NHS millions. It would be interesting to know just how many appointments are taken up by undiagnosed or under treated B12 deficient patients. Now there’s a research project worth carrying out.

Are you in a situation where you are not being heard and feel isolated? Please don’t give up, join this fantastic support group where you will find help from so many members in the same boat.

REMEMBER this is your life, your health and YOU MATTER. You are the expert on how YOU feel, no one else.

Are you a doctor reading this, do you know how we feel?

How would you cope with your job, family, home if for  only 44 weeks out of 52 you were unable to function? Can you give us your side of the story? Anonymously?

If you can, please email in confidence to tracey@b12deficiency.info.

www.b12deficiency.info Twitter – @B12info Facebook

 

Dumb and dumber with NHS money to burn.

As usual, I want to say that I acknowledge there are some clinicians who treat B12 patients correctly, this sorry tale below only refers to those who don’t.

See below another shocker of a letter sent to a B12 deficient patient whose doctor is perhaps hard of hearing and it seems, in need of a little reassurance from a Consultant Haematologist. Lets be honest, he just wanted someone else to reinforce his own ignorant stance.

image1 2

Here you can see that the GP has noted that his patient ‘developed symptoms which occur pre -injection and are relieved post-injection and is receiving the B12 injections every four weeks.’

Clearly I am no rocket scientist, however this statement is clear as day to me.

Put simply;

Patient is in pain and suffering, B12 injection is given, pain and suffering goes away –

With any other condition than B12 deficiency it might actually be that a GP listens to the patient, adds two & two together and thinks for themselves. (Actually it’s a similar story for thyroid patients too).

What should happen is this –

The GP makes the connection that the treatment given at a 4 weekly interval is just not cutting the mustard and so should think; let’s try every 3 weeks – or better still, I’ll ask the patient to tell me at what point the pain and discomfort return post injection and try and nip it in the bud for them by giving the injection way before the pain becomes unbearable.  Simple eh?

The reality is that those long years of medical training regarding listening to the patient and powers of deduction appear to go out of the window with B12 deficiency and two and two for many doctors, cannot be added up at all. They feel they have to call in the ‘big guns’ instead of making a decision all by themselves.

It makes no sense to a B12 deficient patient that such a letter even exists, it’s ridiculous and a complete and utter waste of time for all concerned, including the secretary and the postman.

The reason this letter does exist is because NICE Guidelines direct the GP to refer to haematologists;

http://cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenariorecommendation:4

For people with neurological involvement:

Seek urgent specialist advice from a haematologist.
Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

In my opinion, It would be far more useful to add (fully educated) neurologists and psychiatrists to this section of the guidelines since B12 deficiency isn’t a blood condition. Many patients never experience the enlarged red blood cells (macrocytosis) which lead to this mistaken idea that a haematologist would be best placed to treat a neurological condition.

So the consultant haematologist gives us the answer in the first paragraph but then concludes something entirely ridiculous in the rest of the letter – all that time at university and still not able to understand something so simple, it’s a travesty.

The haematologist doesn’t understand B12 deficiency at all, doesn’t understand that serum B12 blood values when on treatment mean nothing. They will almost always be what a doctor considers ‘normal’ even 4 -6 months post injection or even oral supplementation. This serum value does not indicate what is happening at a cellular level.

Both doctors completely forget the patient’s suffering and ignore what the patient reports.

The haematologist, clearly without any correct training on B12 deficiency regurgitates the same old rubbish peddled by so many clinicians;

no value in increasing the frequency of injections’ – Even though they solve the problem!

these are recommended to be given only every three months’ – Check again – this patient suffers from neurological symptoms so should be treated on ‘alternate days until there is no further improvement’ and then the maintenance dose is 2 monthly. (still not nearly enough for many)

she is being significantly overdosed’ – Completely impossible.

highly unlikely that this is related to B12 deficiency or B12 administration’ – I refer this dumbo to the first paragraph where the enormous clue lies.

The haematologist suggests, in their infinite wisdom, that the patient be referred ‘to a medical clinic for investigation’ – doesn’t this beggar belief??!

The cost involved in these unnecessary referrals just because there is a gaping hole in the curriculum for all health professionals is phenomenal, but it’s not the haematologists money being thrown down the drain is it? They still get paid for not being able to read, research or comprehend simple information and for taking the time to commit this rubbish to paper.  Outrageous.

 

B12 Reminders

B12 is required by the body every day

B12 is a water soluble vitamin

B12 is not addictive

B12 cannot be overdosed

B12 is not a placebo

B12 is essential to life

 http://stichtingb12tekort.nl/wetenschap/stichting-b12-tekort-artikelen/english/treatment-with-high-dose-vitamin-b12-been-shown-to-be-safe-for-more-than-50-years/

If you want a crash course in B12 deficiency click here;  http://www.b12deficiency.info/what-to-do-next/

If you think all clinicians need to be educated on vitamin and mineral deficiencies click here;

https://www.change.org/p/dr-margaret-chan-who-niall-dickson-gmc-make-the-study-of-nutritional-deficiencies-comprehensive-and-compulsory-for-our-doctors-in-10-years-of-training-our-doctors-may-never-study-key-information

If you think our treatment would be better placed in our own hands please sign this too!

https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

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

B12 and Thyroid conference 2015 – an enormous success, incredible feedback and a game changer!

I want to say a huge thank you to the fantastic four; Sally Pacholok, Lorraine Cleaver, Umahro Cadogan, and Dr Malcolm Kendrick – who all have more than one thing in common;

A passion for educating and exposing truth, unflappable tenacity and humour!

Sally Pacholok, as we with B12 deficiency know, is an inspiring educator who diagnosed her own condition and is completely dedicated to raising awareness of this condition. The vast amount of information Sally imparts in just 2 hours, is incredible.

Her time in the UK was spent working almost solidly and even during her sparse free time managed to help patients in a profound way. Anyone reading this who would like Sally to speak at an event then please get in touch, you won’t look back!

Lorraine Cleaver told us of her shocking experience of thyroid disease, her planned suicide and her road back to health after appalling treatment due to ignorance. She also recounted Jill’s story, which echoed her own experience as Jill remained undiagnosed with B12 deficiency and Graves disease for years. Jill was subjected to ECT (Electroconvulsive therapy) in place of what her body required. This presentation was profoundly moving.

Umahro Cadogan became so ill in his teens that he too had to become his own doctor. He has made it his life’s work to educate himself and others on nutrition and nutrigenomics. His presentation on methylation, a hugely complex subject, was expertly delivered making it accessible to all.

Dr Malcolm Kendrick talked about the shocking state of accepted medical data. He is the kind of GP we all want, sensible, caring, humorous. He sorts the wheat from the chaff and is determined to shine the light on the dark corners of medicine. I have followed his blog for years and if you don’t already, then sign up!

IMG_9888

Pic. Dr Jeffrey Stuart, Sally Pacholok, Umahro Cadogan and me.

Just a couple of hours after the conference emails started to arrive from delegates and I was stunned and delighted, here is the first;

“ Thanks for organising the excellent conference today. I was delighted to attend and learnt a lot and met some lovely people. The speakers were all very engaging and enthusiastic.

I don’t think I have ever been at a conference that so many people stayed until the end, especially on a Saturday! That is testament to the line-up you organised. Well done. I hope it makes a difference.“

 Dr J Younge –

Well, judging by my inbox there has already been a huge shift – the day really can be labelled ‘A Game Changer’!

Dr J Younge sums it up perfectly, the delegates were completely engaged right up until the end.

For those of you who attended you will know that there was an impressive (and surprising) number of health professionals across all disciplines who attended and who thankfully took the time to write;

“Congratulations on organising a really interesting day.

The speakers were excellent and inspiring and gave us plenty to think about!”

Dr S Williams

For those of you who couldn’t attend – I promise there will be more events in the future. (I have never done this before, but I really enjoyed it!)

It worked because of the quality and mix of the speakers, and because of the connection between all of the subjects. Those who came are now determined to make a change.

It was a fantastic day and I have learnt a lot about how to make it even better next time.

Heartfelt thanks to Dr Jeffrey Stuart and of course to Damian Witty.

Thanks to all who supported me in organising this event – you are priceless!

Tracey x

www.b12deficiency.info is my passion, highlighting the effect on mental health, fertility, pregnancy and children is a must.

 

If you want to help us to access Hydroxobalamin OTC please sign and share this petition.

Lets continue to work together, we will make a difference, please contact me if you would like to learn more.

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

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.

Best wishes, Tracey

letter-1-14.08.28

 

 

An obvious history of neglect – please help us to buy injectible B12 OTC, many doctors cannot or will not help us!

‘Somataform autonomic dysfunction in the form of neurosis’ or longstanding B12 deficiency?

Below you will see this patient’s medical history is clearly affected by B12 deficiency and yet over 30 years on, still NO ONE will listen and treat her accordingly.

You will see that from an early age (4 years) there are clear signs of B12 deficiency which sadly elude each clinician the patient comes into contact with – instead of vital B12 treatment this patient was subject to repeated consultant appointments, repeated accusations of hypochondria, desperate under treatment and over medication of drugs. Weigh all this up against ampoules of B12 costing just 55p –  the cost is phenomenal not just in life terms to the patient and her family –  but also the cost to the NHS.

If all our doctors left medical school with a full grounding in the very basics of Vitamins, minerals and enzymes then this enormous waste of NHS funds demonstrated here could be largely avoided.

The first red flags of B12 deficiency in the summary of notes are that the patient suffered;
• Faecal soiling
• Constipation
• Behavioural concerns

The treatment the patient received was;
• Lactulose
• Referral to a paediatrician
• Referral to educational psychologists

What the patient required was – to be tested for B12, folate and ferritin and then appropriate supplementation.

At age 22 the patient presented with;
• Palpitations
• Dizziness
• SOB (Shortness of Breath)
• Sweating
• Nausea

The treatment received was;
• Detailed cardiological investigations
• 24h tape and Echocardiogram
• Beta blockers – The clinician’s findings were – ‘No abnormalities detected’
• Referral to a psychiatrist
• Offered appointments to consider SSRI’s – The clinician’s findings were – ‘somataform autonomic dysfunction in the form of cardiac neurosis’

What the patient required was, to be tested for B12, folate and ferritin and then given appropriate supplementation.
The doctor summarising the notes states that ‘The issues regarding her B12 started around 2000’ Finally the patient is tested for the real problem.
• A ‘routine’ blood test noted a raised MCV of 102
• B12 level was recorded at 160
• A few months later these tests were repeated
• MCV recorded at 103
• B12 at 211 ‘slightly low’

Instead of appropriate treatment for low B12 the patient is;
Referred to a cardiologist to ask an opinion on palpitations and this led to a referral to a consultant haematologist
This clinician notes the low B12 and a strong family history of autoimmune disease, sadly this CONSULTANT haematologist ’suspected that the B12 issue was nothing significant; however he repeated the B12 and measured intrinsic factor and parietal cell antibodies…’
When these results came back they were reported ‘FBC was normal, the MCV was only 94 and vitamin B12 was normal at 500. NO mention of intrinsic factor antibodies and parietal cell antibodies.
During pregnancy over a year later the patient was seen in an Obstetric Haematology clinic and the conclusion was that there was ‘no evidence of pernicious anaemia’ despite tests earlier in the year recording the following levels;
• HB 12.3
• MCV 110
• B12 – 192

Note that there is still no folate or ferritin mentioned here.

The patient at this point was discharged from the haematology clinic but was ‘started on vitamin b12 injections with a label of pernicious anaemia, although this was never proven’.

We readers at this point think the patient and her growing baby might at last have the chance after all these years of neglect to be treated correctly,  but as is very common for a B12 deficient patient there is NO COMMON SENSE in the vicinity!

What happens next is that two consultants get their heads together – they ask again for intrinsic factor and parietal cell antibodies to be tested. These results are recorded as ‘normal’ and ‘the vitamin B12 injections are stopped’. Couldn’t you just put your head in your hands and cry? These people are paid vast amounts of money to save lives but they do great harm to B12 deficient patients time and time again!

This poor patient was then retested for B12 another year later and found to have a B12 level of 137, this time someone lets the patient have B12 injections for 3 years, not enough B12 mind, but enough to keep her existing. Low folate is finally mentioned here now but it appears the GP is completely ignorant of the problems associated with folate deficiency too. The summary states that the GP is reluctant to treat with folic acid because of ‘precipitating neuropathy’.  It seems that not one clinician up to now, has given ‘two hoots’ about the neurological damage occurring due to the continual negligence concerning this patients OBVIOUS B12 deficiency induced neurological symptoms.

The notes summary show that the patient is fully aware of the problem her B12 deficiency causes, she rightly asks for loading doses to be given since she has neurological symptoms and knows that this is what the NICE and BNF guidelines dictate.  The way this patient is written about is appalling, at best she is an irritant at worst she is a hypochondriac who requires a mental health diagnosis.

The GP states that since joining the practice the patient has been;
• Seen by a rheumatologist
• Seen by ‘the’ psychiatrists
• Has had advice from haematologists
• Seen by endocrinologist
• Seen a couple of times by neurologists

The GP further states that ALL investigations have been NORMAL the GP goes on – ‘In conclusion I concur with the haematologist that pernicious anaemia has never been proven ……..and that he is inclined to believe the psychiatrist who diagnosed her as having somataform autonomic dysfunction in the form of neurosis. However, at this time I do not think it is just cardiac neurosis I think it is more generalise neurosis.’  The GP continues to be even more patronising in stating ‘I will await the full complement of investigations by the Endocrinologist and the neurologist before taking any further action. It might well be that she will need to be re directed to the psychiatrist …………She is very fixated on vitamin B12 being the cause of all her problems.’

Funny that, the patient is right, she knows that B12 deficiency is indeed the cause of her problems.

If we look at the evidence – this patient has presented with a mass of B12 deficiency and folate deficiency symptoms from a very young age, she has a ’strong’ family history of autoimmune conditions and she has had low serum B12 results and high MCV’s.  It really is very simple if you look in the right place for something and you LISTEN to your patient.

It is very unwise for clinicians to become fixated with inaccurate blood test results which are continually reported as ‘Normal’ despite being miles away from NORMAL. The fact is that there are many causes for B12 deficiency, pernicious anaemia is just one cause. This deficiency is VERY SERIOUS and requires exactly the same treatment whatever the cause!  It is clearly a good bet that pernicious anaemia is the cause in this patient’s case due to the family history of autoimmunity,  just about all the clinicians involved in her care prefer to think it is all in her mind.  This sort of neglect is not an isolated case and just goes to prove how important it is for UK patients to be allowed to buy B12 over the counter in order to be in charge of their own healing.

These clinicians have spent so long trying to prove something which is very difficult to prove in many patients due to the unreliability of diagnostic tests that it has meant that the patient has suffered and continues to suffer. Writing patients off as mentally ill,  when as a clinician you are failing to understand B12 deficiency and it’s affects, is a sign of a very poorly educated doctor.

Doctors please make sure you rule out B12 deficiency FIRST to save your patients from permanent neurological damage and our NHS a fortune!

http://www.b12deficiency.info/what-to-do-next/

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

Please sign and share our petition BUT PLEASE NOTE -Any money donated to Change.org DOES NOT reach B12deficiency.info

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

 

Best wishes, Tracey

 

Summary of notes