I am delighted to announce our second event and Sally Pacholok will be with us again!
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I am delighted to announce our second event and Sally Pacholok will be with us again!
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Vets have a greater knowledge of B12 deficiency than the average GP.
Jasper wouldn’t be misdiagnosed with fibromyalgia, CFS, MS, or bipolar (etc), in place of B12 deficiency.
He would not be given antidepressants for B12 deficiency induced depression.
He wouldn’t be considered to be a lazy hypochondriac.
He would have all of his symptoms taken into account and his improvement would be monitored.
He would not have to cry and plead for his B12 injections, or involve his MP. Shouldn’t humans be treated with the same level of respect and care?
I continue to work hard on the petition and I need some help please;-If you have written to your MP about your deficiency or the OTC petition https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?
please could you let me know their name in order that we can get all our MP’s to work together.
My MP has promised to help all she can, but there is strength in numbers so please get in touch.
Dear Tracey,
Thank you for your email question. As you know our understanding of the role of vitamin B12 in dogs is far from complete, but there are several clinical diseases in which we know deficiency may occur. During our undergraduate Course, students will be taught about vitamin B12 in several modules eg nutrition and gastroenterology, as well as on clinical rotations when they see cases in practice.
If deficiency is present recommendations for dose rates vary but usually weekly injections are given for several weeks.
I hope this is helpful
BVetMed CertVR CertSAO FRCVS
Associate Professor in Small Animal Clinical Practice
Signs & symptoms in infants and children
(List supplied by Sally M Pacholok R.N & Dr Jeffrey Stuart co authors of ‘What’s wrong with my child?’)
• Developmental delay or regression
• Apathy – Irritability
• Hypotonia (decreased muscle tone)
• Weakness
• Tremor
• Involuntary movements
• Seizures (fits)
• Ataxia (Neurological disorder affecting balance, coordination and speech)
• Anorexia and other eating disorders
• Failure to thrive
• Poor weight gain
• Poor head growth
• Poor socialisation
• Poor motor skills
• Language delay
• Speech problems
• Lower IQ – Mental retardation
• Anaemia
• Macrocytosis (large red blood cells) Note – need not be present!
For more information on ‘Red Flags‘ in children please visit
www.b12deficiency.info/children-and-b12/
Please see our posters page to share, download and print these posters.
Raising awareness ; http://www.b12deficiency.info/how-you-can-help/
Best wishes, Tracey
It is rare that I am lost for words – however, I expect after reading this, you might be struggling too.
The below text is a summary of a patient’s experience just last month. I am paraphrasing but the message is very clear. The quality of life of B12 deficient patients, at least to some doctors, simply doesn’t matter. Their pleading for help falls on deaf ears at this particular practice.
Are you sitting comfortably? Here we go –
We had a meeting about treating your ‘normal’ serum B12 level of 334 with B12 injections but have decided that even though you tested positive to parietal cell antibodies years ago, that you are;
HEAVILY SYMPTOMATIC and can demonstrate that your;
7 cardiac arrests,
One major heart attack,
Pulmonary embolism,
Over TEN lengthy stays in psychiatric hospital with added ECT treatment,
A lifetime of complete exhaustion,
Diagnoses of PND, CFS, fibromyalgia, ADHD, bipolar disorder, and, wait for it, – ‘Treatment resistant depression’ could all be directly related to B12 deficiency –
WE CANNOT POSSIBLY TREAT YOU WITH A HARMLESS, LIFE GIVING VITAMIN B12 INJECTION THAT YOU DESPERATELY NEED.
We have decided that although we prescribe many chemical ’off license’ drugs to hundreds of people, including you, at this practice (and mainly to those patients with poor mental health), without batting an eyelid, that we cannot prescribe B12 injections to you because it would be considered to be ’OFF LICENSE’ and we might get slapped wrists.
We as a practice, are all sticking together in this so you have NOWHERE to go even though you have shown us there could be great risk to your health without B12.
We have completely ignored the NEQAS report you gave to us;
http://www.ukneqas-haematinics.org.uk/content/News.asp?id=46
False normal B12 results and the risk of neurological damage (Please click for details)
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”
We have ignored the all the journals backing up your research.
We have also ignored the NHS website stating that many B12 deficient patients have within range results due to the inaccuracy of the serum B12 test;
http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Diagnosis.aspx
‘A particular drawback of testing vitamin B12 levels is that the current widely-used blood test only measures the total amount of vitamin B12 in your blood. This means it measures forms of vitamin B12 that are “active” and can be used by your body, as well as the “inactive” forms, which can’t. If a significant amount of the vitamin B12 in your blood is “inactive”, a blood test may show that you have normal B12 levels, even though your body cannot use much of it. There are some types of blood test that may help determine if the vitamin B12 in your blood can be used by your body, but these are not yet widely available.’
Instead of giving you HARMLESS, LIFE GIVING, B12 injections, we would rather you continue to take the countless, expensive and harmful drugs which we are completely happy to prescribe for you, despite your protestations that they don’t work.
We are also completely happy with the labels we have given you, despite them being common misdiagnoses of vitamin B12 deficiency.
We are rigid, we cannot muster any compassion or understanding and won’t do our own research, we simply can’t be bothered. We don’t care that you merely exist, have been chronically ill for decades and live less than half a life.
We do hope you understand our position?
Now, can you run along and stop wasting our time? We are very busy and very important GP’s. We have lives to save, don’t cha know?
_____________________________________________________________________
Well what the hell do you do with that??
This patient is someone I know. I went to one shocking appointment with them.
I am completely astounded that this patient has the capacity to continue with life despite the trauma, pain and neglect they continue to endure.
This patient deserves care, compassion, understanding and B12, and quite frankly, an enormous medal!
During the appointment I attended, we challenged the GP when it was stated that, for this patient, B12 injections would be ‘Off License’. There was no budging this unfeeling, uncaring, unknowing, cardboard cut out.
Can anyone enlighten me as to why or how b12 injections can be considered ‘off license’ for a heavily symptomatic B12 deficient patient?
Can anyone from the medical profession explain why exactly, patients have to jump through hoops to achieve a diagnosis of vitamin B12 deficiency? The current rationale almost completely ignores symptoms and decides everything on a blood test which is proven to be inaccurate.
Why is it that other conditions have no diagnostic blood test and yet the GP and specialist are completely confident in diagnosing based upon symptoms alone?
How can any clinician feel comfortable diagnosing ‘lab test free’ conditions such as Fibromyalgia, bipolar, schizophrenia, CFS, ME, Parkinson’s and Alzheimer’s etc, without fully and I mean FULLY, ruling out vitamin and mineral deficiencies? It just doesn’t make any sense.
There is something gravely wrong here and this horrendous, cockeyed situation has to come to an end soon, surely?
Although some of us have GP’s who treat us well for B12 deficiency, the shocking case detailed here is not isolated and is a tale to be continued……..
If you too are fighting complete ignorance please find support here;
https://www.facebook.com/groups/174928999276739
If you think you may be deficient please use this page;
http://www.b12deficiency.info/what-to-do-next/
If you want to help us to cut out the middle men who don’t, or won’t care – please sign and share and shout about this petition to help us treat ourselves –
Raising awareness; http://www.b12deficiency.info/how-you-can-help/
See below for more information on the common use of ’unlicensed medicines’. A particular worry is that Metformin is being used for the treatment of urticaria as well as PCOS. I wonder if these prescribers are checking their patient’s B12 levels since this drug drags them down by stopping B12 absorption from food? I bet they’re not.
http://www.nhs.uk/Conditions/Polycystic-ovarian-syndrome/Pages/Treatment.aspx
Metformin isn’t licensed for treating PCOS in the UK, but because many women with PCOS have insulin resistance, it can be used “off-label” to encourage fertility and control the symptoms of PCOS.
Preparations available and licensed indications
Valproate is available in the UK as sodium valproate (Epilim), licensed for epilepsy and semisodium valproate (Depakote), licensed for the acute treatment of mania.
Even though, neither formulation of valproate is licensed for use as a mood stabiliser, there is a significant body of evidence supporting its use.
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!
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.