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 mental health, fertility, pregnancy and children is a must.

 

For more information on the speakers please visit – http://www.b12deficiency.info/conference/

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

If you want to make the education of nutritional deficiencies for doctors compulsory and comprehensive please sign and share this petition too.

Lets continue to work together, we will make a difference.

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

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 diminished 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

 

Neurological symptoms in B12 deficiency are routinely ignored.

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

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

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

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

I couldn’t.

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

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

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

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

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

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

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

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

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

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

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

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

to stay awake for more than three hours a day,

to move without pain,

to walk without wobbling,

to conceive without IVF,

to have a tongue that fits,

to empty our bowels from time to time,

to speak without forgetting,

to hear without constant ringing,

to see without blurring,

to feel calm and relaxed,

to hold down a job,

to have a day without tears,

to remember our loved ones names,

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

Is this really asking too much?

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

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

What happens every day in reality, is criminal.

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

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

Raising awareness – How YOU can help

To join Pat Kornic’s Life saving support group

NICE Guidelines

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

See Andrea McArthur’s Petition.

Imagine being sectioned for a vitamin B12 deficiency…….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Imagine finally giving up after you have fought for help from your doctor, only to be continually ignored and told that your symptoms are all in your mind

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

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

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

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

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

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

Imagine finding a below range B12 result in your notes from years ago and realising that your confinement to a wheelchair and permanent neurological damage could have been avoided if only you’d been given B12 injections

Imagine just how devastated healthcare professionals feel when they understand their training lacked vital information on B12 deficiency

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

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

Imagine the good that will come from correct training – please email me tracey@b12deficiency.info for more information

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

If my site and blog help you please see – How you can help