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;

 

I met Jane Ellison MP in Parliament last week…..

Jane Ellison, Public Health Minister and two advisors kindly spent time listening to the issues facing B12 deficient patients when I met her along with my own, very supportive MP, Nicky Morgan.

I chose to petition Jane as her ministerial responsibilities include; dementia, diabetes, children’s health and school nursing, long-term conditions, health visiting, NHS health checks, preventing avoidable mortality etc. All these categories and more relate to B12 deficiency.

Surprisingly Jane Ellison said that in three years in post she hadn’t heard anything about B12 deficiency and therefore all that I delivered was new to her!

I spoke about the 18,000 odd signatures on the B12 OTC petition, (this asks for our B12 to be made available to purchase over the counter from pharmacies, to bring us into line with so many other countries)  each time it’s signed an email is sent to both Jeremy Hunt – Secretary for Health and Dr Sarah Wollaston; Member of the Health Select Committee.

I spoke about my own personal experience of B12 deficiency and why I feel that both petitions are so vital to the lives of so many who are as yet undiagnosed and those who are currently under treated. I spoke about the 20,000  visits per month to my website of which over 50% are from the UK.

We are all aware that this is a worldwide problem and not just a whine from a disgruntled handful of patients.

I was not allowed to take a paramedic to the meeting with me who would have relayed that around 80% of the calls she attends to are made up from those ‘at risk’ groups; elderly patients who fall, mental health patients, and patients with chest pain.

I also spoke about the petition I have addressed to Jane Ellison herself (to add screening for both B12 and folate to be added to a full blood count) and I left her with some of the many comments left by signers who detail their own delayed diagnosis or misdiagnosis of B12 deficiency. I also spoke about the low reference ranges of the serum test and of the need to treat patients by symptoms.

It remains to be seen whether or not she is convinced that we have a problem.

Jane Ellison will however, follow in many of our footsteps and write to NICE and to the RCGP and other NHS departments following our meeting. Perhaps a letter from a Minister will make the difference?

I will update you when I hear anything.

I know that so many UK patients have met with or written to their MP’s and to NICE and frankly, to anyone else they can think of who may have either clout or heart.

I hate to ask you again – but for those of you who can muster the energy to contact your MP, please ask them to raise the issues and concerns you outline with both Jeremy hunt MP and Jane Ellison MP then perhaps we can help them to understand the strength of feeling that patients have and the desperate need for change?

If you have already done this, could you please make sure your MP has forwarded the information onward too?

Thanks to all of you who have already emailed me the names of your supportive MP’s. My MP Nicky Morgan will have contacted them – it doesn’t mean they have engaged unfortunately but you could ask!

If we all work together on this, we can make a difference.

Al the best, Tracey

B12 the Antidote – joining up the dots

We may be exposed to poisonous gases and chemical toxins to different degrees at some point in our lives, whether it be from air pollution, exhaust fumes, pesticides, cleaning products or from faulty or poorly fitted appliances within our homes or workplaces.  Flood, fire and warfare are all situations where potential exposure to toxic gases can occur.

However, B12 in the form of hydroxocobalamin is an excellent toxin scavenger, this means that if you are exposed your levels of B12 could be inactivated and depleted.

Could you be an unknowing victim? Do you have diagnosis of CFS, ME, fibromyalgia, depression, Alzheimer’s and have not had thorough screening for B12 deficiency?

Late last year I met Belinda Goldsmid, she and her family were chronically exposed to products of combustion, including carbon monoxide (CO). It was leaking into their home from a poorly installed and situated boiler flue. This had devastating health and social effects. Continual low level exposure can can lead to chronic ill-health, poor mental health and extremely debilitating symptoms.
Belinda is now experiencing phenomenal improvement of her previous debilitating symptoms with the use of B12 (hydroxocobalamin) injections. Following this, Belinda asked for my help in finding research papers documenting the use of B12 as a treatment for toxic exposure, including the silent killer carbon monoxide.

Maybe the origin or the exacerbation of your B12 deficiency can be traced back to toxic exposure?

For more information please see our new page, www.b12deficiency.info/b12-the-antidote

Belinda was helped by the charity CO Gas Safety, you can find more CO charities here.

If you think you might be B12 deficient the What to do next page is your starting point.

If you want to learn more about B12 direct from Sally Pacholok please see our Conference page

 

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

 

Raising awareness – how YOU can help