Dying to breathe

Three weeks ago I thought I might be taking my last breath. I had a virus which coupled with whooping cough (that I caught back in April), meant that each breath I took felt like trying to push a train uphill, through a very, very tight tunnel.

Thankfully, excellent care from first responders Gina and Bob and paramedics Rachel and Dan saved me from hospital. I am now fully on the road to recovery.

This terrifying experience was relatively short lived but I know that for some with B12 deficiency the inability to breathe without real effort is part of everyday life. Those who are desperately under treated or are currently undiagnosed may struggle with these symptoms everyday.

The problem for many with presenting symptoms of B12 deficiency which include depression and anxiety may result in them being given a mental health diagnosis whilst their physical symptoms are disregarded.

B12, iron and magnesium deficiency can cause breathing problems but how often are these causes fully explored?

Mental Health diagnoses often equal invisibility for patients and a separation from other physical health disciplines, but the link between poor mental health and B12 deficiency was made over 100 years ago.

Unfortunately patients with poor mental health with undiagnosed B12 deficiency are often given higher and higher doses of antipsychotics and antidepressants but experience a lack of response and continued  deterioration.

Please see;
Does B12 Deficiency Lead to Lack of Treatment Response to Conventional Antidepressants?
Subjects with depression who do not respond to conventional antidepressants should be evaluated for nutritional factors.
At times, medical disorders may be mistaken for a primary psychiatric disturbance because of prominent and commonly associated psychiatric or behavioral manifestations. The lack of recognition of the underlying medical condition precludes optimal treatment even though the psychiatric treatment might be appropriate for the symptoms, often manifesting as inadequate response or psychotropic treatment resistance.1 Increasing severity of the underlying medical illness can also increase the risk of relapse in psychiatric disorders despite adequate psychotropic medication.2
Desperate Mental Health Patient
I became aware of this patient after seeing her post on social media.
She is currently being held under section 3 of the Mental Health Act. She has been in hospital since midsummer of this year. She has had an unsuccessful tribunal.
Her diagnoses include:
Depression
Anxiety
Depression with psychotic features
Schizoaffective disorder
Somatic symptom disorder
(Obviously there are a great many causes for poor mental health which include: B12, folate, and magnesium deficiency and thyroid problems.)
Drugs administered
Aripiprazole
Venlafaxine
Risperidone
Escitolpram
For the past three years this patient has experienced:
High blood pressure – (magnesium deficiency and hyperthyroidism?)
An inability to breathe without effort – (iron, magnesium and B12 deficiency?)
Tightening and choking around the throat – (an inability to swallow can also be caused by iron deficiency, magnesium deficiency and hyperthyroidism).
Can you imagine being sectioned, struggling for breath and struggling to swallow, but all those in charge of your care ignore requests for further investigation for the cause of your symptoms?
Not being heard, or ‘seen’ properly is shattering to anyone in hospital but if you are held under section 3 of the Mental Health Act you are literally at the mercy of somebody else. You cannot refuse treatment under this section.
This patient can’t call paramedics, can’t make herself properly heard and has been told that her physical symptoms are in her mind. But what if she has never been screened for nutritional deficiencies or hyperthyroidism despite presenting with symptoms?
What if she has been screened but the test results have not been fully understood due to the limitations of B12 and thyroid testing? Strict reliance on ‘normal’ lab reference ranges means so many people deteriorate without any treatment for the root cause of their symptoms.
Whilst psychosomatic symptoms (physical illness or other condition caused or aggravated by a mental factor such as internal conflict or stress) are a very real thing, physical causes for poor mental health should always be ruled out. If doctors haven’t received any training in the fundamentals of nutrition, then they aren’t exploring this as a cause. This situation needs to be rectified.
Have you been told your symptoms are psychosomatic?
Have you been injected with antipsychotics against your will?

Are you terrified that each breath you take might be your last?

This is what this patient is living through now.
We need those who are in charge of her care to take a serious look at information surrounding vitamin B12 and other nutrient deficiencies for her and others with mental health problems.
For those who follow my blog you may be aware that  in September Dr Marjorie Ghisoni facilitated my lecture on B12 deficiency for RCN members in North wales and for Mental Health Nursing students at Bangor University. What we need are more open minded clinicians like Marjorie who will make an enormous difference to their patients once armed with fundamental information which is currently missing from their training.
Please share this blog, you could make a difference to someones life.
Best wishes Tracey
If you are a health professional requiring training on B12 deficiency please contact me at tracey@b12deficiency.info for more information.
Are you aware that exposure to toxins such as carbon monoxide can cause B12 deficiency?
If you think you may be B12 deficient then please visit this page:
Please don’t supplement with oral B12 before testing, this could skew your results. 
If this blog post and my website has helped you please visit;

 

When rich charities deliberately back the wrong horse, something fishy must be going on….

Do you donate to the Alzheimer’s society?

Has B12 and folate helped your declining memory like it did mine?

Not all of us have these particular symptoms. Those of us who do and have B12 injections and correct folate supplementation regularly enough to help repair the nerves of brain, are proof of the fact that our cognitive decline has halted with this inexpensive treatment.

We as patients are largely ignored on this issue, and so are the scientists who report the same.

Read what Jerome Burne has to say on this issue ;

http://healthinsightuk.org/2015/08/06/policy-on-alzheimers-sure-we-want-a-cure-just-so-long-as-its-not-cheap/

‘Do you believe there is a new drug for Alzheimer’s just over the horizon? That there is no truth in the popular idea that B vitamins might cut your risk of getting this dreadful disease?

Well you are wrong on both counts but it’s not your fault, you’ve quite reasonably fallen for some very sophisticated marketing. Let me explain.

You will be amazed at how tiny the benefit a drug needs to have to be hailed as a breakthrough and how ruthlessly a smokescreen of shoddy trials can be used to obscure the truth about the potential benefits of B vitamins.

This is not biased ignorant pharma bashing; it’s a reasonable conclusion from what has been happening. For instance, compare the enthusiastic way a new drug is greeted, with the low key response to research showing that cheap vitamins might do the job.’

….and what Margaret McCartney has to say; http://www.bmj.com/content/351/bmj.h4064

This is no breakthrough. How did this paper score such extraordinary publicity?’

If you want to learn the truth about B12 deficiency please consider joining us at the conference; http://www.b12deficiency.info/conference-2016/

A couple of research papers for you too;

Cognitive impairment and vitamin B12: a review.
http://www.ncbi.nlm.nih.gov/pubmed/22221769

Relationship of cognitive function with B vitamin status, homocysteine, and tissue factor pathway inhibitor in cognitively impaired elderly: a cross-sectional survey.
http://www.ncbi.nlm.nih.gov/pubmed/23042212

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, it is low and should be much higher. 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.

Please visit

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

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

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

Raising awareness – how you can help