‘Sally Pacholok’ – A film based on the true story of an ER nurse who takes on the medical establishment when she uncovers an epidemic of misdiagnosis.

It is with great pleasure that I post this Press release below for the film ‘Sally Pacholok’. The feature film, based on Sally’s life, has been entered to the Sundance Film Festival and will make its UK premiere in cinema’s next year.

Thanks to the drive and foresight of Director and Producer Elissa Leonard, ‘Sally Pacholok’ is set to to shine a bright light on B12 deficiency and change the current, limited understanding of the devastating effects of this condition.

Sally’s name will be firmly cemented into the minds of the public and healthcare professionals alike, and will be made synonymous with vitamin B12 deficiency. The impact of this film will play an important role in helping to save even more lives.

Elissa’s earlier documentary, ‘Diagnosing and treating B12 deficiency’, demonstrates exactly how dire the situation can be for B12 deficient patients. The hard hitting image of a paediatrician who is near death, clad only in a nappy, is one which stays with the viewer for a very long time. He was seriously B12 deficient but was misdiagnosed with a rare neurological disease.   https://www.youtube.com/watch?v=BvEizypoyO0

Thank goodness Sally Pacholok has the passion and generosity required to work tirelessly to educate both health professionals and the public about this life threatening neurological condition.  Her ability to impart clear concise information both in person, and in the written word, (Could it Be B12? An Epidemic of Misdiagnosis – co authored with her husband Dr Jeffrey Stuart), has already saved many lives around the world. Could It Be B12? has been translated into Dutch and Slovenian, and has recently been published in India.

If you think you may be B12 deficient please visit: http://www.b12deficiency.info/what-to-do-next/

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

Please also consider joining Pat Kornic’s life saving support group

Press release below;

Leonard Spends Summer Making Dramatic Feature

Elissa Leonard produced and directed a dramatic feature film in May and spent the summer in post production.  The film is a 90-minute whistle-blower/romance written by Elissa Leonard and Patrick Prentice.  Sally Pacholok is based on the true story of an ER nurse who takes on the medical establishment when she uncovers an epidemic of misdiagnosis.  (Think Erin Brockovitch about healthcare.)  Elissa bought the life story rights to Sally Pacholok in 2012.

Annet Mahendru and Elissa Leonard

Annet Mahendru plays the title role of nurse Sally Pacholok.  Ms. Mahendru is a break out star on The Americans on FX, where she plays sultry Soviet spy Nina Sergeevna.    Andrew Ballard plays Dr. Jeff Stuart, the real life husband of Sally Pacholok.

With the exception of Annet Mahendru, cast and crew were from the Baltimore and DC areas.  The local SAG casting was done by Pat Moran and Associates.  Jeremy Morrison was the line producer and editor.  Nick Gardner was the director of photography, Dave Cross was the AD, Alex Jennings was the location sound mixer,  Angela Ratliff was the production designer, Julie Bent was the costume designer, and Pickles Kinion was lead hair and makeup.  Paige Gold was the production’s lawyer and Judy Walder the accountant.  Charlie Barnett wrote the film score and Studio Unknown did the sound design.

The film was shot in 19 days in the MD/DC area and you can see more of it here.  Expect to see a Power of the Purse announcement soon!

Please stop treating vitamin B12 deficiency as the poor relation to pernicious anaemia, this discrimination can seriously harm patients!

Autoimmune pernicious anaemia (PA) is just one of many causes but it’s clear that many doctors consider it to be the only serious cause of B12 deficiency and therefore the only one worth treating with B12 injections. This is due to lack of education on this subject which for most, is usually lumped in with anaemia. It is important to note that anaemia (macrocytosis) is not always present in B12 deficient patients.

In fact ALL causes of this debilitating condition require correct and adequate treatment and it is ALWAYS SERIOUS if it remains undiagnosed and untreated. Remember this condition attacks the central and peripheral nervous system, all body systems and all ages, not just elderly women. B12 is vital for the production of red blood cells and for DNA synthesis.

It seems the majority of doctors – worldwide, have only really learnt about PA and limited information at that. This means that they can neglect and under treat seriously B12 deficient patients. Up to 60% of patients who fail to achieve the correct diagnosis of PA due to the inaccurate diagnostic tests (gastric intrinsic factor antibodies & parietal cell antibodies), may be given an extremely poor deal along with those of us who do not have PA but are B12 deficient due to other causes.

The widespread use of Metformin and Omeprazole to name just two drugs, which stop absorption of B12 from food, cause untold damage. In the case of the diabetic drug Metformin, a doctor may confuse the tingling and numbness in fingers and toes caused by B12 deficiency with diabetic neuropathy, thereby potentially condemning the patient to serious and permanent nerve damage.

Neither of these drugs (and many others) fully warn the user, or the prescriber, on the ‘Patient information leaflet’ (PIL) of prolonged usage causing B12 deficiency.

Most patients with B12 deficiency will require B12 injections FOR LIFE, whether they have; coeliac disease, have had a gastric bypass, atrophic gastritis, Crohn’s disease, genetic mutations, advanced liver disease they all need injections and NOT the low dose cyanocobalamin oral tablets which doctors with lack of knowledge prescribe. Please note there are many more causes of this condition.

There are however some causes of B12 deficiency which CAN be temporary;

• Helicobacter Pylori – Provided this bacterial infection has been short-term and that
H-pylori lesions have not damaged the wall of the stomach or duodenum the patient can recover from this deficiency. If damage has occurred then B12 injections will be required for life.

• Parasites, such as fish tapeworms, or Giardia lamblia – ONLY IF these infestations are correctly diagnosed and effectively eradicated B12 deficiency can be corrected with appropriate treatment. Unfortunately parasitic infestations are hard to confirm as the diagnostic tests for these are also prone to flaws and frequently miss ‘host’ patients who would otherwise be able to absorb B12 from their diet.

Patients using stomach acid lowering drugs (H2 Blockers, PPI’s and antacids) have a secondary problem alongside a resulting B12 deficiency; a greater vulnerability to parasites which can unfortunately lurk undetected for years. These patients may have a very poor chance of naturally ridding themselves of these invaders who interfere with normal B12 absorption and compete for any B12 present in the diet. A healthy level of stomach acid is required to kill off these parasites.

Many B12 deficient patients, whatever the cause, are discriminated against and treated as second class citizens every day, in treatment terms, but a doctor who does not understand the myriad of causes of this condition could cause serious harm by assuming oral tablets will be absorbed and correct a deficiency.

If Type 1 and Type 2 diabetes patients were treated with the same level of discrimination, there would be uproar. Imagine doctors only allowing type 1 patients insulin but sending all type 2 patients off to simply look at a pig?

If you are a doctor who has learned only about PA and your patient does not test positive for IFA or PCA then you must still treat this patient properly whilst exploring other causes, and remember they may have a parasite that tests can’t detect.

•  If you can’t find the cause please remember this is not the fault of the patient

•  Treat their symptoms, and don’t assume it is ‘all in their mind’

•  Give them loading doses (6 injections over two weeks)

•  And if they have NEUROLOGICAL symptoms REMEMBER to continue their loading doses until their symptoms STOP IMPROVING, as per NICE and BNF Guidelines.

Best wishes, Tracey

The difficulties with vitamin B12.
We discuss the management of patients who present with neurological manifestations of vitamin B12 deficiency; highlighting the fact that parenteral replacement is needed in such cases, even if the serum vitamin B12 level appears to be normal.
http://www.ncbi.nlm.nih.gov/m/pubmed/27009308/?i=5&from=b12

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

Information on PA Tests – http://www.b12deficiency.info/assets/pat-kornic-testing-f.pdf

http://www.b12deficiency.info/what-are-the-causes/

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

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

Please sign and share our petition;

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

 

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;

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

East Lancashire NHS Trust – you win the trophy hands down, for dangerously low, lower reference level for serum B12 test, 110 – 914ng/L!

Just take a look at these results, which are being ignored by the GP (see previous post) and then have a gasp at that lower reference range, are you still standing?  NO?…. neither is the patient.  They remain exhausted with regular blackouts.

What are you doing to your patients East Lancashire NHS Trust?

How many Lancastrians have been misdiagnosed with other illnesses due to the almost impossibility of achieving a diagnosis of B12 deficiency under this Trust?

IMG_20140611_100402

 

East Lancashire NHS Trust need to identify all the inevitable misdiagnoses due to this incredibly low reference range – we thought Cardiff and Vale NHS Trust were bad but this really takes the biscuit.

Exactly how many patients have been incorrectly misdiagnosed with;

Alzheimer’s/Dementia?

Depression?

Chronic fatigue syndrome?

Fibromyalgia?

Multiple sclerosis?

M.E.?

Psychosis?

Bipolar?

Vertigo?

Congestive heart failure?

Chronic pain disorder?

Anaemia?

Autism?

ADHD?

How many babies fail to thrive?

How many children have a diagnosis of developmental delay, mental retardation?

How many metformin taking diabetics have their neuropathy incorrectly attributed to diabetes?

How many new mothers sectioned with post natal depression from inactivated B12 supplies?

How many benign essential tremors have automatically led clinicians to an incorrect diagnosis of Parkinson’s?

How many Strokes and heart attacks?

How many suicides?

East Lancashire NHS Trust we implore you to change this assay kit and re test all who have gone before and to screen all those patients who have left the GP’s office with nothing more than a diagnosis of hypochondria.

TAKE ACTION NOW – THIS IS SERIOUS!!

Please visit www.b12deficiency.info

http://b12deficiency.info/children-and-b12.html

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

Please sign and share our petition

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

When a doctor cannot see the wood for the trees – disaster is inevitable


Please note – I do know that some doctors know how to treat B12 deficiency and pernicious anaemia excellently, sometimes there is a lovely surprise when a member of Pat Kornic’s life saving support support group reports how well they are being treated by their doctor. However, everyday, another member has a tragic tale to tell. Unfortunately these posts far outweigh the former, by an enormous percentage.

These blood results were posted on the support group with a note stating the GP deemed the results ‘good, apart from ferritin which is a little on the low side’.

 

IMG_20140611_100402
We are all aware that an exclamation mark usually shows – strong feeling, surprise, anger or joy. In the case of these blood results it is meant to catch the eye of the doctor and alert them to a problem. You don’t really need the help of the exclamation mark if you happen to be  able to read and recognise numbers. Should this doctor have passed their medical finals? Not in my opinion.
Reading blood results accurately must be a fundamental part of the job of a GP but we do know that in the ‘world of B12′ it appears to be a tragically under utilised skill.

These amazingly low results belong to a 19 year old patient who has a family history of pernicious anaemia. The B12 deficiency symptoms started as a young child with black outs, and in more recent years the extreme tiredness, shortness of breath, problems walking, lack of concentration and heart palpitations have become the norm.

When the patient challenged the doctor regarding the lack of treatment considering these dangerously low levels – they were told ‘I will treat you once your B12 level falls to 2 or 3’.  Yes that’s right, two or three!!!!!

The only result here which raised an eyebrow with this doctor is ferritin (iron storage),  for which the patient has been given an iron supplement. Correcting an iron deficiency will not help deficient B12 and folate levels and this patient will continue to deteriorate. Please see the case study on ‘Ellen’ here http://www.b12deficiency.info/case-studies/

Ferritin is the only result which is actually within range. This doctor has absolutely no idea about the devastating affect of either folate deficiency or B12 deficiency and this is truly shocking.

When will our doctors wake up and see the damage they are doing through their appalling lack of basic knowledge?

If you happen to find yourself in this situation you might ask your doctor to put in writing exactly why they are refusing to treat you and if they are happy to take responsibility for your increasing nerve damage.

This patient has neurological symptoms, they require injections every other day until the symptoms stop improving as per the NICE and BNF guidelines. The doctor may stick to her ignorant and arrogant stance on this patient’s treatment and this is a tragedy. How many more B12 deficient patients at this GP’s practice are deteriorating whilst this doctor continues to dish out ridiculous comments in place of actually being a doctor?

This patient has asked for a referral to see a haematologist, lets hope this happens sooner rather than later and that this next clinician can see the wood for the trees.

Many clinicians fail to understand that they need to educate themselves once they leave university, believing that there is nothing new to learn. This directly, impacts negatively upon patients.

If you haven’t done so already please sign and share our petition

Raising awareness – how you can help

Best wishes, Tracey

To help your loved ones understand…..An open letter written by Pat Kornic

The following is a draft letter written by Pat Kornic, which she has generously shared with us. This letter can be personalised for your own situation and given to family and friends, it explains what pernicious anaemia/B12 deficiency is and how it affects sufferers.

Pat is Canadian so it was originally written for Canadian PA/B12D sufferers. However for UK members – the only part that would have to be changed is where the frequency of injections is mentioned. In Canada the maintenance dose is monthly and in the UK we know to our cost, that the maintenance dose is quarterly. (This is found in the 5th paragraph.)

Incidentally, Pat wrote this on behalf of a family member who suffers from PA. It is important to note here, that all their symptoms improved once the frequency of B12 injections was increased to suit their individual needs, and that frequency is 3 times per week.

The letter;

Dear family member, carer, or friend,

Someone you care about has pernicious anaemia or B12 deficiency. I am sure you may have heard your mother or grandmother talk about an aunt or an uncle who had a problem with the food he/she were eating. It seems that it didn’t matter how much meat, eggs, milk or cheese they ate they still had to eat raw liver if they were going to live.  Or perhaps your grandmother talks about an aunt who had to have injections and if she didn’t get the injections, she became quite ill.

What do you think when you hear the words pernicious anaemia? Do you think it is just an anaemia and so your family member or friend will just have to take iron tablets and they will be ok. You are not alone in that assumption. Do you know the definition of ‘pernicious’ means fatal? Many people think iron anaemia is the only kind of anaemia and once you take iron tablets or pills you are ok.

Pernicious Anaemia and B12 malabsorption means I cannot absorb vitamin B12 from foods. That it doesn’t matter how much meat or dairy products I eat, I would only be able to absorb 1 per cent of the B12 found in those foods. It also means I cannot swallow a vitamin B12 tablet and expect to get better. I would only absorb 1 per cent of the amount of B12 in the tablet which isn’t enough to keep me alive.

This means that in order to live I now have to have B12 injections for the rest of my life. This is because I lack the protein that is found in the lining of my stomach (called Intrinsic Factor) needed to absorb B12. You see, my immune system thinks intrinsic factor is an enemy and once my body produces intrinsic factor, my immune systems sends out anti intrinsic factor antibodies to destroy the intrinsic factor.  This is just one cause of pernicious anaemia.

Did you know my neighbour has pernicious anaemia? He has Crohn’s disease and had surgery on his small intestine. The small intestine is another place where B12 is absorbed once it leaves the stomach. Surgery to the small intestine prevents this absorption process of B12.

There are other causes of pernicious anaemia such as coeliac disease, some prescribed drugs, stomach surgery, chronic gastritis. Any permanent disruption to any part of the digestive tract will interfere with B12 absorption and will over a period of time result in developing pernicious anaemia.

Did you see me fall last night when I tried to go upstairs? Darn, I knew the step was there but it was dark and I just couldn’t seem to find it.  I know I fell asleep on the sofa; you are right I seem to be always falling asleep. I did tell my doctor but he said it was nothing to worry about and those injections I get once a month should stop that from happening. But the injections haven’t stopped me falling asleep nor have they stopped the pins and needles I get in my hands and feet. Neither have they helped me with my memory problems because just last week I was at the mall, (I had had a good day and so tried to pick up a few things you had forgotten to get for me) and when I came out, I couldn’t find my car. In fact I couldn’t remember if I had driven my car to the mall or if you had dropped me off. I panicked a bit and then remembered my neighbour had driven me but was she supposed to pick me up? After several telephone calls (thank goodness for cell phones and for programmed numbers), my neighbour found me.

I’m sorry what was the question you asked me again? Oh, you want to know where I put the letter that came in the mail for you?  Well I put it..you know..I put it in.umm..umm you know that thingy..No I can’t tell you what ‘thingy’ means right now..it is on the tip of my tongue but I just can’t think of the word….  Oh, you found it..in the Fridge? Odd I can’t remember putting it in the fridge. You know it is as if I live in a fog all of the time.

All of the above are some of the symptoms that occur with pernicious anaemia/B12 deficiency. There are many more symptoms. So the next time you see me fall or ask me something I can’t remember, please read this letter again so you will understand I am sick. That I have an illness that hinders me from doing ordinary, every day tasks. That despite the fact that there is no outward physical indication of my illness, I have a blood disorder that if left untreated, will cause severe neurological damage and even death.

Signed

 

A PA/B12D sufferer

 

Join Pat’s fantastic support group here: https://www.facebook.com/groups/174928999276739/

Raising awareness – how you can help

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

 

Best wishes, Tracey
www.b12deficiency.info

If you think you may be vitamin B12 deficient – please read for ‘What to do next’

This is a page direct from www.b12deficiency.info

DO NOT SUPPLEMENT at  all BEFORE TESTING – This could skew results and make diagnosis difficult.

 1. Make a note of your symptoms.

Click here to check your symptoms or click here to check your child’s symptoms.

Click here to read about causes of B12 deficiency.

Note anything that relates to you.

There is a downloadable poster which demonstrates some of the conditions which can occur with low B12 or indeed may be misdiagnosed in place of B12 deficiency. You will find this on our ‘Very Useful Links’ page.

2. Ask your doctor to test serum B12, folate, ferritin, and a full blood count.

Please note, it would be advisable to have a thyroid function test too, they share many symptoms! It is recommended that these should be fasting tests so ask for an early appointment. Sometimes doctors are reluctant to carry out these tests, however they can be done privately. For more information on testing please click here.

3. Once your results are back it is very important to obtain a copy.

You are legally entitled to these.

4. Learn to interpret your test results.

If you are symptomatic your B12 level could still show as ‘within range’ this test is known to be inaccurate. Click here.

Please note that if you suffer psychiatric symptoms of B12 deficiency they too are reversible with correct B12 treatment. Psychiatric symptoms can manifest at higher levels than the lower reference ranges of the B12 serum test. In these cases it would be entirely appropriate for your doctor to carry out a therapeutic trial of B12 injections to confirm a deficiency.

An extremely high B12 level without supplementation requires investigation.

These particular test results are important in B12 deficiency;

Ferritin

Folate

Red cell folate

MCV

MCH

MCHC

RDW

WBC

 Click here for excellent information on optimum levels.

 It is important to remember that B12 deficiency cannot be ruled out in the absence of anaemia and / or high MCV. Click here for more information compiled by @b12unme.

 5. If you have results which confirm a deficiency, do not accept cyanocobalamin tablets unless you know that your deficiency is due to a dietary lack of B12. Remember B12 is only available from animal products!

A deficiency, even if caused through a vegan or vegetarian diet, should still be treated by injections in the first instance, in order to build levels fast.

You can also join this support group. Urge your family members to check the symptoms and causes page too, this deficiency could also be affecting your loved ones.

 6. You should be given loading doses by injection. If you have neurological symptoms then your doctor must treat you as per NICE and BNF guidelines these state that you must stay on loading doses until symptoms stop improving, see NICE Guidelines here. You may have to remind your doctor that there is no known toxicity of hydroxocobalamin and that it is used in huge quantities to treat

cyanide poisoning. Once treatment starts you may notice certain reactions during or soon after the loading doses click here for more information. During early intensive B12 treatment potassium levels may fall, causing hypokaelimia, so please increase your intake of potassium rich foods. Many people are not treated adequately enough for B12 deficiency, please see the Scottish Petition here.

7. Your doctor should adhere to these guidelines but sometimes this doesn’t happen. The BNF (British National Formulary) Guidelines state how Hydroxocobalamin should be administered and each practice has a copy of this book. Register here and print off section 9.1.2 to show your doctor if they are non compliant. Nerve damage takes a long time to heal that is why there is no limit on the administration of B12 injections in those suffering neurological symptoms. Four injections per year will not heal nerve damage, they will keep you alive but deterioration will continue!

8. Ask your doctor/nurse to teach you how to self inject.

This will save you and your practice time and money, if you have neurological symptoms you could be injecting every other day for months. Please click here for the NHS injection guide.

9. If you are B12 deficient and it is not due to a dietary lack of B12 or due to a parasite or other curable forms, you will require injections for life. In these cases, ask you doctor to write this in your notes.

10. If your results show that you are low in folate your doctor may  prescribe a higher dose folic acid tablet than the 800mcg that is available over the counter. Your serum level should be at the upper end of the range. Some patients cannot tolerate synthetic folic acid and therefore would require supplementation of the naturally occurring form of folate please click here for more information on this.

11. If you are low in ferritin you will require supplementation. Iron supplements come in tablet and liquid form and as an infusion. Your doctor should advise what is best for you here and monitor levels accordingly. Please note doctors do not routinely test for haemachromatosis (iron overload). My local lab has a reference range of 10 – 450, the optimum level here would be around 80 -100.

12. A good B complex will be required alongside your injections as all the

B vitamins work together. Make sure the B6 in the B complex is under 60mg. Please note, the folate contained in B complexes and multivitamins is commonly folic acid. Please see point 10 above.

13. In some patients potassium levels can drop with increased B12 loading doses. Your doctor should keep an eye on this and you can help yourself by eating potassium rich foods.

14. If you doctor feels that you are not B12 deficient based on ‘within range’ results you must push for other tests. Click here.

If you have neurological symptoms and a doctor who is non compliant you must assert yourself, and take someone with you who can support you.

15. Your ferritin and folate levels will require periodic monitoring. It would be pertinent for your B12 levels to be monitored in order to ascertain that you are able to metabolise your injections. Iron must be kept at an optimum level and not become too high. Once B12 treatment has commenced B12 levels may remain high but it is the symptoms which are the marker for your treatment. Do not let your doctor stop your injections if you have a malabsorption problem and there is a mistaken belief that your levels are replete.

www.b12deficiency.info

Please sign our petition – you will be helping to save lives
Best wishes, Tracey

B12-life-logo

Please make our life saving injectable vitamin B12 (hydroxocobalamin) available over the counter.

Please sign and share this petition as far and wide as possible wherever you are from, 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

 

Thank you, Tracey

Dear Doctor, have you been giving vitamin B12 deficiency another name?

You could probably visit ANY street in the world and find B12 deficient residents. In 20 homes you may find eight people who are deficient, and this may be just two families, including the children of course.  B12 deficiency is very common, however it is very commonly given another name.

My symptom list overlaps with those of my loved ones, however some we don’t share at all. Please remember we don’t all present in the same way.

What we need our doctors to recognise is that misdiagnosis of B12 deficiency is, in itself, an epidemic. Please visit www.b12deficiency.info/misdiagnosis.html

We need our doctors to diagnose correctly and of course to rule out what may be considered to be ‘more serious’ conditions. Please start by ruling out B12 deficiency, make this condition your first port of call. After all, it’s safe, it’s exceedingly cheap to treat and it does not interfere with any other treatment you might feel it appropriate to explore.

I know a B12 deficient patient who has been restricted to quarterly B12 injections. They have also been given, lithium and its associated monitoring, anti psychotics, anti epileptics, anti depressants, MRI scanning, CT scanning. We know she deteriorates because those in charge of her care refuse to recognise the vital importance of this essential vitamin and that each of her symptoms traces it roots to B12 deficiency. Tragically this is not an isolated case.

In the face of flawed serum B12 tests, using a therapeutic trial of B12 loading doses whilst you spend the time ruling out, or confirming other illnesses is quite simply, common sense and good medical practice.

We need our doctors to KNOW the symptoms of B12 deficiency, yes there are a lot, but you have been trained to retain information, learning the symptoms of this condition will save more lives than you can imagine, I list them below.

Remember, this deficiency affects ALL body systems but not every sufferer will present in the same way, each family member can have a different set of symptoms and please don’t forget the children!  If you diagnose a mother, make it your job to screen any children too.

Make it your job to listen to your patient’s when their symptoms return only a week after an injection. Make it your job to follow the BNF guidelines and give the injection every other day until the patient’s symptoms stop improving.
Make it your job to understand the need for optimum ferritin and folate levels. Treat your patient’s as individuals, teach them to self inject, as you do your diabetic patients, just think of the nurses time saved! Put their B12 on repeat prescription so they don’t need to plead for health,  this will free up more of your time.
Please, please, please,  skip the cyanocobalamin tablets unless you KNOW, without a doubt, that your patient’s deficiency is due to diet alone.

Many with this condition have been misdiagnosed, they become expensive to treat, some cannot contribute to society and this costs the NHS a fortune.   You will see that the following conditions share many vitamin B12 deficiency symptoms.

I hope you will look closely at the diagnoses you have made for your patient’s and that you can find it within yourself to revisit the treatment prescribed.

Multiple sclerosis
• numbness and tingling
• blurring of vision
• vertigo
• tremor
• ataxia
• fatigue
• chronic pain
• muscular spasticity
• muscle weakness and tightness
• bladder incontinence
• constipation
• cognitive problems
• anxiety
• depression
• erectile dysfunction

Alzheimer’s
• forgetfulness
• mood swings
• speech problems
• vision problems
• delusions
• incontinence
• weight loss
• loss of appetite
• dysphagia
• memory loss
• increased vulnerability to infection
• difficulty moving
• disorientation
• difficulty performing spatial tasks

Parkinson’s
• tremor
• stiffness of muscles
• dystonia
• postural instability
• depression
• anxiety
• cognitive impairment
• delusions
• sudden outbursts of emotion
• poor concentration
• psychosis
• urinary incontinence
• constipation
• erectile dysfunction
• dysphagia
• orthostatic hypotension

CFS
• fatigue
• forgetfulness
• confusion
• palpitations
• dizziness
• balance problems
• IBS

Congestive heart failure
• fatigue
• breathlessness
• ankle swelling
• a persistent cough
• lack of appetite
• weight loss
• tachycardia
• depression
• anxiety

Fibromyalgia
• slowed or confused speech
• cognitive impairment
• widespread pain
• stiffness
• fatigue
• IBS
• inability to regulate body temperature
• tinnitus
• tingling and numbness
• anxiety
• depression
• painful periods

I could of course go on…… and on …………

Here are the symptoms of B12 deficiency

Neurological
• Tinnitus.
• Tremor.
• paresthesia – numbness, tingling and pain.
• Confusion / disorientation.
• Weakness of legs, arms, trunk.
• Impaired vibration – position sense.
• Abnormal reflexes.
• Unsteady or abnormal gait / falls.
• Ataxia (Neurological disorder affecting balance, coordination and speech).
• Balance problems.
• Difficulty walking.
• Dizziness.
• Restless legs.
• Visual disturbances / decreased-blurred vision / damaged of optic nerve.
• Forgetfulness, memory loss.
• Dementia / intellectual deterioration.
• Impotence.
• Paralysis.
• Impaired fine motor coordination.
• Muscular spasticity.
• Bladder or bowel incontinence.
• Impaired pain perception.
• Nocturnal cramping.
• Disturbance in taste and smell.
• Optic atrophy.

Neuro psychiatric
• Psychosis
• Depression / suicidal.
• Post natal depression.
• Irritability.
• Paranoia.
• Mania.
• Hallucinations.
• Violent behaviour.
• Personality changes.
• Apathy.
• Anxiety.
• Delusions.

Haematological signs and symptoms
• Anaemia
• Macrocytosis (large red blood cells).
• Hyper segmented neutrophils.
• Generalised weakness, fatigue.
• Breathlessness.
• Pallor / jaundice.
• Chronic fatigue.

Vascular Problems
• Orthostatic hypotension / Postural hypotension

Female
• Infertility.
• Recurrent miscarriage.
• Abnormal PAP smears.

Male
• Infertility.
• Impotence.
• Low sperm motility.
• Low sperm count.

Gastrointestinal
• Loss of appetite/weight loss or anorexia.
• Epigastric pain (poor digestion, bloated feeling after eating small or normal sized meals).
• IBS – Irritable bowel syndrome.
• Constipation.
• GERD – Gastric reflux disease – ulcers / mouth ulcers.

Additional Signs and Symptoms
• Dry cracked corners of the mouth.
• Premature greying.
• Glossitis – swollen / sore tongue, geographic tongue.
• Fainting/light headedness.
• Osteoporosis.
• Symptoms mimicking Parkinson’s and MS.
• Nominal aphasia – difficulty recalling names or words.
• Radiculopathy, spinal nerve pain – commonly in lower back and neck.
• Increased susceptibility to infections.
• Poor wound healing.
• Loss of appetite.

Please click here to see the signs and symptoms in children http://b12deficiency.info/children-and-b12.html

Please also see this page http://www.b12deficiency.info/what-to-do-next/

Raising awareness – 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

Best wishes, Tracey

‘Vitamin B12 injections are a placebo’ the ignorant doctor said . . .

Obviously to those enlightened health care professionals who understand the role of vitamins and minerals, this commonly spoken phrase is of course a completely ridiculous statement.

To those of us who suffer from B12 deficiency it’s infuriating to be told this by someone who studied long and hard to become a doctor.

The mere fact that some of our doctors haven’t a clue about the very foundation of all human and animal life is astounding.

I learnt about vitamins and minerals at school, it appears that for some doctors this may constitute the entire learning on nutrition – we really are stuffed if our particular GP happened to be ill that week. I don’t actually remember much of the detail but I do remember how important they are. Sadly it seems that even some of our newly qualified doctors replace their old knowledge with the following ridiculous ideas-

Vitamin B12 = Broccoli
Vitamin B12 injections = Placebo
Vitamin B12 deficient patient = Lazy, whiny, hypochondriac requiring antidepressants and a thorough dressing down.

Vets, in contrast, are taught properly on this subject and know when an animal is deficient. How strange it must seem to vets that some doctors try to treat this condition with antidepressants!

A placebo is ‘a substance that has no therapeutic effect’ or an ’innocuous or inert medicine’

Food is ‘any substance containing essential nutrients such as vitamins and minerals’, or ‘a nutritious substance that people or animals eat or drink or that plants absorb in order to maintain life and growth’.

B12 is essentially food, we starve without food, quite quickly as it happens.

‘Starve – to suffer or die, suffering or death caused by lack of food’ Our cells starve without B12.

Quite simply – we need food everyday to sustain a healthy life, we need all vitamins and minerals regularly to maintain optimum health. We cannot survive if we eat just once every three months so why do some doctors think we can manage on any vitamin if we were only able to access it once every three months?

Vitamins are food, they are essential to life, accessing vitamin B12 is very complex so injections are required unless the deficiency is diet related.

‘Dear Health Care Professional please learn this and act accordingly, your patients need you to update your knowledge urgently!’

The text below is taken from NHS Choices (link below) -It’s a shame it is misleading and incomplete in parts. I have taken the liberty of adding some improvements in BOLD CAPS. Although thankfully, nowhere, does it say ‘Vitamin B12 is a placebo’!

http://www.nhs.uk/Conditions/vitamins-minerals/Pages/vitamins-minerals.aspx

Vitamins and minerals are essential nutrients your body needs in small amounts to work properly.
Most people should get all the nutrients they need by eating a varied and balanced diet. HOWEVER, IF YOU CANNOT ABSORB  B12, YOU WILL REQUIRE HYDROXOCOBALAMIN INJECTIONS FOR LIFE IN ORDER TO ACCESS THIS VITAMIN. If you choose to take vitamin and mineral supplements, be aware that taking too many or taking them for too long can cause harmful effects. THERE IS NO KNOWN TOXICITY OF VITAMIN B12, IN FACT HYDROXOCOBALAMIN IS SAFELY USED IN LARGE QUANTITIES AS TREATMENT FOR CYANIDE POISONING. 
Some people may need to take vitamin and mineral supplements. For information on who could benefit from supplements, see Do I need vitamin supplements?
The pages in this section contain advice and information about vitamins, minerals and trace elements essential for health, including:
▪ what they do
▪ how much you need
▪ what happens if you have too much
▪ safety advice about supplements
For information about nutrition for children, see vitamins for children.

What are vitamins?
There are two types of vitamins: fat-soluble and water-soluble.
Fat-soluble vitamins
Fat-soluble vitamins are found mainly in fatty foods such as animal fats, including butter and lard, vegetable oils, dairy foods, liver and oily fish.
While your body needs these vitamins every day to work properly, you do not need to eat foods containing them every day.
This is because your body stores these vitamins in your liver and fatty tissues for future use. These stores can build up so they are there when you need them. However, if you have much more than you need, fat-soluble vitamins can be harmful.
Fat-soluble vitamins are:
▪ vitamin A
▪ vitamin D
▪ vitamin E
▪ vitamin K
Water-soluble vitamins
Water-soluble vitamins are not stored in the body, so you need to have them more frequently. BINGO ! LOOK AND REMEMBER IGNORANT DOCTORS – WATER SOLUBLE VITAMINS ARE NOT STORED IN THE BODY SO YOU NEED TO HAVE THEM MORE FREQUENTLY!!!!!
If you have more than you need, your body gets rid of the extra vitamins when you urinate. As the body does not store water-soluble vitamins, these vitamins are generally not harmful. However, this does not mean that all large amounts are necessarily harmless.
Water-soluble vitamins are found in fruit, vegetables and grains. HANG ON A MINUTE,  VITAMIN B12 IS WATER SOLUBLE AND IS ONLY AVAILABLE FROM ANIMAL PRODUCTS!

Unlike fat-soluble vitamins, they can be destroyed by heat or by being exposed to the air. They can also be lost in water used for cooking. This means that by cooking foods, especially boiling them, we lose many of these vitamins. The best way to keep as many of the water-soluble vitamins as possible is to steam or grill foods, rather than boil them.

Water-soluble vitamins are vitamin C, the B vitamins and folic acid. Folate is Vitamin B9
There are also many other types of vitamins that are an important part of a healthy diet.

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

Best wishes, Tracey
www.b12deficiency.info