A tale of two nurses – threat and resolution

Nurse one
My lovely mum is a retired District Nurse. Her job involved giving B12 injections to her patients at 3 monthly intervals.

My grandma had a diagnosis of PA (pernicious anaemia) and mum would recognise when she was ready for her next injection.

Mum had zero formal training in B12 deficiency but was an excellent caring nurse who always put her patients first.

Nurse two
This nurse is a Practice Nurse who administers B12 injections.

She uses some of her time to diligently count up the days so that the patient can have their B12 injections at exactly 3 monthly intervals, not before, never before.

This nurse has also had zero formal training in B12 deficiency but has been told incorrect information about B12 deficiency.  She may also be an excellent nurse.

Resistance
My mum follows rules, she likes to get things right. When she saw fit she would challenge decisions made by doctors for the patients she knew and understood. 

My mum was not fully onboard with B12 deficiency at the beginning of my journey in early 2012. There was part of her that didn’t and couldn’t fully believe that B12 deficiency might be the root cause of our loved one’s symptoms. Her training was also, naturally, taking her down a different path.

She saw the resistance I was up against with doctors and worried about my challenging their knowledge because her belief lay somewhere else. Mum in part, sided with the professionals whilst trying to support me.

This was tough for mum. Her training as a nurse meant that in this situation she felt subordinate, that the doctors knew best, that their expertise should be respected and that if you’re told NO then you should accept that and shut up. I couldn’t accept the many NO’s I was getting.

If I’m told no and I know that that no is wrong, I will not give up trying to get a YES. This causes problems for those around me who are not on the same page.

It made people angry and it isolated me, that isolation is uncomfortable and lonely.

I have bored many of my family and friends to tears about B12 deficiency. I have been told to shut up so many times BUT when you know something is not right how can you not carry on?

In the beginning
I had identified what I thought were B12 deficiency symptoms in my mum right at the beginning but mum attributed all of them to other causes. I used to ask her “what if your breathing improved with B12?” With an exasperated sigh she would say “well it can’t can it, I’ve had this all my life”.

To shut me up she had a serum B12 test which came back ‘within range’. Her GP was willing to talk to me about this but at the time mum was still resistant so it didn’t happen.
I knew that both mum and I had methylation issues  and that dad had them too so mum’s attitude frustrated me a lot, an awful lot.

Light at the end of the tunnel?
Mum had met Sally Pacholok and saw her speak at our 2016 conference. From then she really understood B12 deficiency but still did not accept that it affected her too. Her GP said that her serum B12 result at 323ng/nl and a folate level of 3.3ng/nl was fine.

My mum’s symptoms, to me, were like flashing beacons growing bigger and bigger every day.

Spring 2018
This was a very difficult time for our family and I became increasingly worried about mum’s health and well being. She finally allowed me to get involved and I wrote to her GP on her behalf telling her of the family history, which included me, my siblings, aunt, uncle and grandma, at this point.

I detailed mum’s signs and symptoms which included ;
Breathlessness
Depression
Apathy
Bladder problems
Tachycardia
Exhaustion
Insomnia
Sluggish thyroid
Osteoporosis
Methylation issues.

I provided documents from  Point 4 of the What to do next page which show the inaccuracies of the serum B12 test and I also supplied mum’s methylation profile.

I asked if mum could have a trial of B12 injections and we waited.

Breakthrough
After a short phone conversation with mum the GP booked mum in for her loading doses.

I discovered early on that I cannot tolerate folic acid and chances were that since half my methylation issues came from mum she may not tolerate it either. Mum’s folate level was well below range, however the nurse told her there was no need to supplement this!
Mum started taking active folate. (Please be aware that this can be a tricky supplement for some and the general advice is always to start low and slow with it – especially if you are taking prescribed anti depressants or anti psychotics. Folinic acid (un methylated folate) may be a better alternative form for some).

Mum had her injections booked for the week ahead and she took folate every day with no ill effect. She said she felt no different at all for the first couple of days and then…….the change was incredible. Mum said she felt brighter. She looked brighter, she smiled. Starting the loading doses had such a profound effect, this flowering of my mum was an absolute delight to see.

She was able to breathe easier, she could garden in the extreme heat the UK had last year without having to take a break every ten minutes. The depression and apathy lifted. So many surprising things improved for mum, things she thought were totally unrelated. This was the mum I knew was in there but couldn’t get out.

Mum said she could never remember feeling so well. She began to ask for the journals and information I had sent to her in the past as she now had the impetus to learn from them.

“I wish I’d let you do this 6 years ago” said my mum.

I was beside myself hearing these words.

Having mum on board is fantastic, I am proud to say she is banging on the very same drum as me now!

I know mum is proud of the work I do but she didn’t fully understand it until she actually experienced the magic of feeling so well once you have the right level of the vital nutrients you’re lacking.



Incorrect treatment
After loading doses the GP asked to see mum, who was primed to make sure that the GP understood that mum was neurologically affected and would need to stay on the loading dose frequency for as long as it took for symptoms to stop improving.
Mum called me to say that I’d be disappointed, that the GP said she’d see her in three months for her maintenance dose, but that she wanted to buy B12 from abroad and self treat as another family member does, because she did not want her health to deteriorate as she had never felt so well.

I was not disappointed in my mum. I understand the difficulty patients feel in trying to point their GP’s toward the correct treatment regime. I was however ecstatic that this time mum knew that the GP was incorrect and she wanted to keep herself well.

Ignorance and threat
I am very lucky, my GP prescribes my B12 weekly, many others are not in this situation and this needs to change. I want all of us to be treated as individuals by our GP’s and not have vital treatment restricted due to lack of education and restrictive guidance.

Mum bought her B12 ampoules safely and cheaply from an online pharmacy. She found that in the three months running up to her appointment with the nurse she was doing well on a weekly injection.

Twenty minutes before mum was due to have her B12 injection from the Practice, she was phoned by a nurse who informed her that the appointment had been cancelled as she had counted up and found that the booking was 3 days early! She also stated (incorrectly) that it was dangerous to have too much B12. The nurse told her it would have to be arranged for the following week and she hoped it wasn’t inconvenient.

By this time, my mum has found her voice. She stated that yes it was inconvenient but she would give herself her own injection and see her the next week.

This nurse, worried by what she’d been told, took that information to the GP and mum received the letter below:

Resolution and kindness
Following receipt of this letter mum asked if I would go to the appointment with her, and of course I agreed – however I felt that if we emailed first it could help not only mum, but others at the Practice too.

This is the text from the email mum sent:

A three week wait eventually resulted in the best out come possible…….

The GP called and thanked mum for her email and for the information telling mum;
“I want to provide your weekly B12 ampoules for you to manage at home so please come and collect your prescription from us.”

Thank you
Thank you to the nurse who prompted this action, her reporting of the issue yielded a great opportunity for learning and a brilliant outcome for mum.
Thank you to the GP who treats mum as an individual.
Thanks to all those GP’s who are now listening and who are changing the lives of those that they care for.
Thank you to my mum for finally letting me interfere.
And thank you to Damian who has been with me every step of the way.

Best wishes
Tracey
www.b12deficiency.info

Nice Guidelines

www.b12deficiency.info/signs-and-symptoms/

Methylation issues

If folic acid doesn’t suit you, there are alternatives; In the UK folinic acid could be prescribed by your GP but not methylfolate. Remember we are all different so what suits me, may not suit you.

B12 Deficiency – The Inside Story

On the 1st of May 2019 I was interviewed by Steven Bruce of the Academy of Physical Medicine for a live 90 minute broadcast including questions from Academy members.

Steven described this as “one of the most important and informative live broadcasts we have done, giving a wealth of information not covered in medical training, and exposing the shortcomings of the conventional response”.

Screenshot 2019-05-31 at 16.27.40 copy

Whether you are B12 deficient or a health care professional wanting to learn more about this condition (and gain CPD credits), this will be of interest to you.

The Academy Of Physical Medicine are generously making this broadcast available to all for a reduced fee of £3 until the 15th June. Enormous thanks to Steven and the team at APM, all proceeds are being donated to www.b12deficiency.info.

CLICK HERE TO PAY AND WATCH THE BROADCAST

Feedback from the live broadcast;

“One of the greatest CPD’s ever, thank you”

“This is a tremendously complex subject so well done Tracey for fighting what must feel like a constant uphill battle to educate people”

“Bloomin’ brilliant broadcast”

Best wishes, Tracey

70th Anniversary of the NHS. North Wales RCN fly the flag for B12 deficiency once more

On Tuesday this week I spoke in scorching North Wales about B12 deficiency to a group of nurses from different disciplines who attended an RCN Event which celebrated 70 years of the NHS.

The hope is that they will be able to take the information gained and make a difference to the patients under their care.

Those present at the event, some who were diagnosed with B12 deficiency, totally understood the situation that many patients face. Nurses are always shocked that they haven’t received any training on this very common condition.


Tracey witty  & Sandra Robinson-Clark

Nurses are the ones who administer injections, hear the complaints from patients who can’t cope on the restricted three monthly regime and who are best placed to report back to the GP’s what the reality of the situation is for a patient who does not fit into the the ‘one size fits all’ treatment regime.

And it’s very clear that many nurses struggle in the same way that patients do in communicating their experience of B12 deficiency (either personally or professionally) effectively with doctors they work with.


RCN members and Kate Parry, Dr Marjorie Ghisoni, Sandra Robinson – Clark 

One nurse told me that when she asked if a patient who was exhausted could have her injection earlier than 3 monthly, the reply was ‘No, it’s all in her head’. This attitude is not uncommon and even though this nurse could see the need for more frequent B12 for her patient, the door was slammed shut. This situation is ridiculous and harmful and desperately frustrating for both nurse and patient.

The reference range for North Wales is set too low at 150ng/l so consequently many deficient patients will be missed. Point 4 on this page will help you to see how harmful it can be to ignore the clinical picture and base treatment solely upon serum results.

Of course not every symptom is due to B12 deficiency but our nurses can see the benefit of being educated about this very common and commonly misdiagnosed condition. They can see that considerable cost savings can be made by screening those at risk and by giving B12 injections based on individual requirements rather than the bizarre idea that each patient’s need is the same.

I posted the following on facebook on the 3rd of July;

This week the NHS is 70 years old.

If we can help to stop the misdiagnosis of vitamin B12 deficiency, the savings for the NHS and for society as a whole would be phenomenal.

Too many patients remain mentally and physically ill and unable to work.

Image may contain: 7 people, text

 

So far it has been shared 608 times.

My hope is that maybe some of our doctors see this post and take action to make sure that their  ‘at risk’ patients have this deficiency ruled out prior to using expensive and invasive procedures that may not be required.

Thanks again to Dr Marjorie Ghisoni and the nurses of NorthWales RCN for their commitment to the cause!

If you and your team require training on B12 deficiency please contact me here
I’d be very happy to help.
Best wishes

Tracey

 

Pernicious anaemia (PA) or B12 deficiency – which is worse?

Patients with a diagnosis of PA (pernicious anaemia) do not experience a more excruciating pain or a different kind of damage than someone who has a diagnosis of B12 deficiency due to another cause.

Both B12 deficiency and PA cause damage to the protective fatty coating (myelin) of the nerves. PA patients are often thought to have a ‘worse’ form of the condition but this is not true.

Diagnosis and treatment of B12 deficiency often proves to be a very difficult challenge for the patient but in some areas a diagnosis of PA (a positive IFAB test) can represent a ‘golden ticket’ to treatment, leaving others with identical symptoms, but no confirmed diagnosis of PA, without any treatment at all. It is important to note that “A negative Intrinsic Factor antibody result does not exclude the diagnosis of PA as only 60% of patients with PA will have this antibody”.

PA and B12 deficiency (unless it is caused purely by dietary lack) are caused due to an inability to absorb B12 from food and therefore B12 injections are required to bypass the stomach.

There would be uproar if our doctors only used plaster casts for a broken arms if the cause were a skiing accident whilst treating everyone else with a broken arm with a sticking plaster.  This scenario is what’s happening far too regularly with B12 deficiency and the situation is down to lack of education and correct, clear information about this condition.

This condition can have a devastating effect whatever the cause. If you choose a diet which avoids animal products then you should supplement with B12 in order to access this vital nutrient. Of course vegetarians and vegans might also be at risk due to a co existing cause so it is advisable to familiarise yourself with these in case they too apply to you.

You’ll see there are so many more causes to consider as well as PA;

  • Decreased stomach acid
  • Atrophic gastritis
  • Autoimmune pernicious anaemia
  • Helicobacter pylori
  • Gastrectomy, partial or complete
  • Gastric bypass surgery (weight loss)
  • Intestinal resection
  • Partial or complete ileectomy
  • Gastrointestinal neoplasms
  • Malnutrition
  • Eating disorders  – anorexia – bulimia
  • Inadequate diet
  • Vegetarianism / veganism
  • Malabsorption syndromes
  • Alcoholism
  • Crohn’s disease
  • Coeliac disease (gluten enteropathy)
  • Dipphyllobothrium infection
  • blind loop syndrome
  • diverticulosis
  • inflammatory bowel disease
  • small bowel overgrowth
  • tropical sprue
  • gastric irradiation
  • ileal irradiation (bladder,cervix, uterus,prostate)
  • Inborn errors of B12 metabolism
  • Transcobalamin II deficiency
  • Pancreatic exocrine insufficiency & Chronic pancreatitis
  • Imerslund Gräesbeck syndrome
  • Zollinger – Ellison Syndrome
  • Bacterial overgrowth (small bowel)
  • Fish tapeworm
  • Advanced liver disease

Drug induced causes – Please note; this list is not exhaustive

  • Antacids
  • Colchicine (treatment of gout)
  • H2 Blockers (Zantac, Tagamet, Pepcid)
  • Metformin – Diabetes drug (Glucophage)
  • PPI’s – Proton pump inhibitors (Omeprazole, Nexium, Prevacid, Protonix)
  • Nitrous oxide anaesthesia
  • Nitrous oxide recreational abuse (Laughing gas / Whippets / Hippy crack)
  • Mycifradin sulphate (Neomycin) antibiotic
  • Para aminosalicylates  antibiotic
  • Phenytoin (Dilantin) – anti-epileptic
  • Potassium chloride (K-Dur)
  • Cholestyramine (Questran)
  • Chemotherapy and radiation treatment

Increased demands

  • Chronic Hemoltic anaemia
  • Hyperthroidism
  • Multiple myeloma
  • Myelopproliferative disorders
  • Neoplasms
  • Pregnancy

Some patients may never find out the cause of their condition, this does not mean that they should be denied B12 injections which are, safe, inexpensive and the most efficient treatment for their deficiency.

Our doctors may only have learnt about pernicious anaemia and not the wider picture of B12 deficiency during their training. My own GP said his tuition on the subject lasted around half an hour. This partial information can lead to our GPs thinking that B12 deficient patients without a confirmed diagnosis of PA do not require treatment by injection. Some mistakenly believe that a patient can use oral 50mcg cyanocobalamin tablets to correct their deficiency despite an inability to absorb B12 from food. Obviously this ignorance can lead to serious consequences.

Please see below;

.

Even when the patient receiving the letter above reported that they do eat meat fish eggs and dairy they were still incorrectly told that they didn’t require further B12 injections.

Everybody with B12 deficiency is affected differently and has a different degree  of damage and severity of symptoms, and so an individual requirement and frequency of treatment. Often the missing link in treatment is proper communication with the patient. Listening to how their condition affects them rather than restricting treatment according to the ink on paper detailing blood results would have a profoundly positive effect.

Imagine how the advice celebrity GP, Dr Hilary gives, makes this patient feel?
He states that; if her blood levels are ok she ‘doesn’t need injections now’ but that her “long standing forgetfulness may not be reversible”. Oh dear.

Our GP’s training is incomplete, they have not been given all the information required to treat patients with B12 deficiency correctly. Consequently both them and us are being done a disservice.

Their education needs to include the simple fact that if a patient is B12 deficient and their diet includes animal products, then they will need injections for the best chance for nerves to heal – whatever the cause. (Surely it goes without saying that if someone choosing a vegan diet is seriously ill due to lack of B12 they they should not be denied the right to injections in order to facilitate a swift recovery).

I know that many reading this will state that very high dose sublingual tablets are as good as injections, but the fact is they don’t suit everyone, they are not available to everyone and your doctor may be unaware of their existence.

There is much written about 1000mcg oral cyanocobalamin being a good substitute for injections – that a patient will absorb 1% by passive diffusion. (Too low to chance?) However these journals focus on serum levels and not how the patient is feeling. Why limit the chance of recovery in this way when the injections work perfectly?

It would be helpful if patients were treated as individuals, as per their symptoms, rather than the idea that one cause of this condition is worse than another.

If you are a healthcare professional reading this, please see the homepage of the website for more information about the issues that face patients.

Best wishes

Tracey
 www.b12deficiency.info

Ref; Published: 15 March 2018 Authors:Wang H, Li L, Qin L, Song Y, Vidal-Alaball J, Liu T http://www.cochrane.org/CD004655/ENDOC_oral-vitamin-b12-compared-intramuscular-vitamin-b12-vitamin-b12-deficiency

P.s. Thank you to all who have signed and shared the OTC petition – we are at nearly 60,000 signatures! You are making a difference and I continue to work toward this goal.

Have you seen our B12 for Life pin?

 

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 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;