Can you spare a minute for Matthew?

In November 2012 Matthew Leahy was admitted to a Mental Health Unit  – The Linden Centre, Essex where he was found hanged seven days later. He was just 20 years old!

Matthew’s mother Melanie has since become aware of his low vitamin B12 levels, and probable coeliac disease. His symptoms included; psychosis, depression, insomnia, exhaustion, constipation and stomach problems.

I’m reaching out to ask you to sign Melanie’s petition; https://petition.parliament.uk/petitions/255823

From Matthew’s records it appears the first sign of B12 deficiency was recorded in May 2011 at a level of 127pg/ml, reference range 180 -914. In June 2011 low B12 was recorded again.

In Matthew’s notes it states that in July 2011 his B12 level was 154pg/ml and that B12 was prescribed, however, this was not given by injection, if at all, because in August 2011 Matthew’s B12 level had dropped to 122pg/ml.

It is also clear from Matthew’s notes that his thyroid function was impacted.

Matthew’s B12 levels were below range and dropping. See the note to the GP that they state “T4/TSH and B12 were ‘slightly abnormal and kindly arrange follow up blood test”. BUT NO treatment for these was instructed or given.

You can see that below an extremely low level of 122pg/ml is recorded as ‘normal’. Matthew was heavily symptomatic for both B12 deficiency and thyroid dysfunction and despite repeated testing, correct treatment was not given.

If you are from the UK please sign this petition and share this blog. Melanie needs to reach 100,000 signatures by the 6th of November for her petition to be discussed in Parliament – this date has been brought forward from the 23rd of November due to Parliament closing for the General Election so it is a race against time.

At the time of writing the petition has 54,050 signatures.

Melanie’s aim is to have a Public Enquiry into the failings surrounding Matthew’s death in order to help stop this happening again.

Please sign by following this link; https://petition.parliament.uk/petitions/255823

You only need to give your name, email address and postcode and then you must confirm the email from the Petitions Team for your signature to be counted.

The connection between poor mental health and low B12 was made over 100 years ago but too many remain untreated despite severe symptoms and low B12 levels. Please see; http://www.twitlonger.com/show/n_1s0ggga

If you or your loved ones are experiencing mental health problems and B12 deficiency hasn’t been explored please see; https://www.b12deficiency.info/b12-and-mental-health/ and;

https://www.b12deficiency.info/what-to-do-next/

#matthewleahy #matthewscampaign
#MatthewLeahy #aminute4matthew
You can visit Melanie’s website here and FaceBook 
Thank you for your help in signing and sharing.
Best wishes
Tracey x

Wherever we are in the world, we are all in the same boat…

There are many problems associated with diagnosis and treatment of B12 deficiency and many of them boil down to a lack of education of health professionals. They have all been done a disservice.

This is a worldwide problem.

Serum B12 blood results
I help people to access the treatment they need and always urge people to get a copy of their current and historical results. In some cases they have been found to be below range, but the result has been ignored whilst the patient has continued to deteriorate. Remember you are legally entitled to your results.

Our GP’s may be unaware of the limitations of the serum B12 blood test, that it can miss seriously deficient patients and that this can lead to a within range result being batch filed and labelled as ‘normal’.

Lack of education of this common condition means that our GP’s don’t necessarily understand that they cannot wholly rely on the blood results. The clinical picture is of utmost importance and if the patient is symptomatic it’s vital they access correct treatment for B12 deficiency.

It is important to note that the Active B12 test (holoTC/ Holotranscobalamin) is not gold standard either, remember that the clinical picture is key.

Treatment with tablets
Too many GP’s in the UK (and in other countries) try and treat B12 deficiency with B12 tablets and if the patient includes animal products in their diet, like the one the result belongs to below, then their deficiency is not caused by dietary lack and injections are essential. If you cannot absorb B12 from food then a tablet taking the same route won’t work either.

NICE Guidance states:

  • Not thought to be diet related — administer hydroxocobalamin 1 mg intramuscularly every 2–3 months for life.
  • Thought to be diet related — advise people either to take oral cyanocobalamin tablets 50–150 micrograms daily between meals, or have a twice-yearly hydroxocobalamin 1 mg injection.

The above result at 144 ng/L is below range and is definitely showing B12 deficiency, the patient has many neurological symptoms and as I have said, includes animal products in their diet. Unfortunately this GP (and others in the Practice) believes that 50mcg cyanocobalamin tablets are the best way to treat this patient.

In reviewing these results, the GP added their own note stating:

“B12 low, script for cyanocobalamin and repeat 2 months”.

The second sentence originates from the lab and states:

“Note low B12, deficiency possible, treat if clinically appropriate otherwise repeat after 2 to 4 months and review.”

The issue with the lab note is the term: ‘deficiency possible’ –  surely this should read ‘definite B12 deficiency’?

All labs are different, all assay kits are different and all reference ranges are different. This lab below has a low reference of 150ng/L and in my area it is 220 ng/L, in East Lancashire it’s 110 ng/L. There is no across the board standard which help either the doctor or the patient.

The patient that these results belong to continued to feel unwell, had absolutely no abatement in symptoms but due to the supplementation of the 50mcg tablets there was a small raise in the serum B12 level to 161ng/nl. This confirmed to the GP that the patient could absorb B12 and they were instructed to continue with the tablets. In fact, the patient was told that they could ‘definitely absorb B12’.

CRIKEY

This would not have happened had the GP been properly educated about B12 deficiency.

Waste of time, money and NHS resources
This patient went back to see the GP repeatedly due to feeling no improvement and each time their B12 serum level was tested. Each time they were told that they should continue with the tablets for another 2 months. How frustrating is it to even read this, never mind live this?

My recent involvement in this case provided the information the GP needed to treat the patient as per NICE Guidance and how cyanocobalamin should only be used for patients with B12 deficiency of dietary origin.
However, I was told that the Practice were following another protocol and that they felt the patient hadn’t taken the tablets religiously and this was the reason for no improvement.

WOW

After nearly a year of zero improvement in symptoms I think most of us would be hard pushed to take a tablet which was proving to be a pointless treatment.

A tricky but simple case
Thankfully common sense has now prevailed and the Practice has decided to give the patient the correct treatment of B12 injections. It took many phone calls and emails for this to be actioned. The people I asked to speak to were often ‘in a meeting’ but I don’t give up.

It should not be that any patient is left for 11 months without correct treatment for this common and easy to treat deficiency.

This practice were very annoyed that I was advocating for the patient, they said that there was no need for “3rd party involvement” however in this case and in fact all that I get involved in, there absolutely was a need.

Until education on B12 deficiency is the norm, it will continue to be that outside agencies are needed to help health professionals of all disciplines to understand the seriousness of this condition and what correct treatment should be.

We are all the same
Many of us know how difficult it can be to challenge a doctor, especially those that have their heels so firmly dug into the ground.

Fortunately I learnt long ago that it can be unsafe not to challenge doctors, that they are no different to the rest of us, that they are not infallible, and they can correct their mistakes if they choose to – if the infrastructure allows them to.

I am thankful to all those health professionals who appreciate being furnished with the correct information about B12 deficiency and who regularly use my site.

Best wishes

Tracey
www.b12deficiency.info

If you require personalised help please see the contact page.

You can read testimonials here.

If you are a healthcare professional wishing to gain CPD credits please see the film page 

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.

If you require personalised hep please see the contact page for more information.

A bizarre and wasteful practice – Is your doctor following this crowd?

It seems there are a group of doctors using the B12 test to in order to remove B12 injections from patients who require life long treatment.

I have blogged about this practice before but due to the extra impact it’s having I thought it time to revisit.

Some doctors (far too many) are systematically re testing serum B12 levels in those already diagnosed believing that a ‘within range’ result means the patient can function without their essential treatment.

These patients cannot absorb B12 from food, hence their original diagnoses, so how exactly are they meant to access B12 without their injections?


Test shortage
Another impact of patients being retested unnecessarily is a resulting lack of the reagent required to carry out the test. This has happened in the past few months and obviously delays diagnosis and treatment for new patients.


Wasteful and harmful
This practice is nearly always wasteful but it’s harmful to the patient too if the doctor fails to understand that testing once the patient is on treatment is useless and that the result has no relationship to the level of B12 in their cells.

What the experts say
The testing lab often add this note to the bottom of a high result; “Do not measure B12 levels in patients who are on parenteral treatment”

and to quote NICE Guidance;

  • Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required.
  • What monitoring is required after treatment for vitamin B12 or folate deficiency has started?

    • Perform a full blood count and reticulocyte count: 

    • Within 7–10 days of starting treatment.

    • A rise in the haemoglobin level and an increase in the reticulocyte count to above the     normal range indicates that treatment is having a positive effect.

    • If there is no improvement, check serum folate level (if this has not been done already).

    • After 8 weeks of treatment, and also measure iron and folate levels.

    • The mean cell volume (MCV) should have normalised.

    • On completion of folic acid treatment to confirm a response.

    • Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required.

    • However, cobalamin can be measured 1–2 months after starting treatment if there is no response.

    • Neurological recovery may take some time — improvement begins within one week and complete resolution usually occurs between six weeks and three months.

    • Ongoing monitoring is unnecessary unless a lack of compliance with treatment is suspected, anaemia recurs, or neurological symptoms do not improve or progress.

Remember if you are neurologically affected you need to be on every other day injections for as long as it takes for those symptoms to stop improving.
If require personalised help please see my contact page for more information.
Best wishes

Tracey

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

Have you been told to shut up about B12 deficiency?

Something happens to people who discover they are B12 deficient, it seems that an internal switch has been flicked and it leaves you with an uncontrollable urge to tell everyone you know and even people you don’t know about B12 deficiency.

Sometimes this has a positive outcome, sometimes what you say falls on deaf ears and sometimes expletives are involved. You may even experience stonewalling from you doctor.

Your B12 spotting radar becomes highly attuned and when you see a child with a few grey hairs or someone mentions they have fibromyalgia you feel compelled to explain about B12 to random strangers.

People outside our shared experience don’t understand the seemingly obsessive and bizarre behaviour they are confronted with.

They think that your focus in every living moment is infused with B12 deficiency. They hear B12 deficiency blah blah B12 blah blah blah B12 blah blah……

Over the years I have driven my family and many of my friends (who I felt could be B12 deficient) completely bonkers to the point where they ridiculed rather than listened.

They switched off internally and in panic, this made me ramp it up even more.  To see the symptoms, know the family history and not say anything, feels like walking by a person dying in the street and not helping at all.

This situation is hard to take, especially when it’s someone you love who is ignoring your concern and you are simply asking them at the very least, to have B12 deficiency ruled out.

The thing is that not everyone is confident about asking for anything from their GP, most people wouldn’t dream of questioning a doctor or suggesting something to them, they might feel rude and disrespectful – and after all, shouldn’t the doctor know best?

Even though we might think we’re discerning and can spot a mile off where we think B12 deficiency is occurring, our friends and family think we think it’s everywhere and everyone has it, even the next door neighbours budgie.

We know that B12 deficiency is very common and due to a lack of education and commonly misdiagnosed, so it’s natural that you will sound like you think everyone has it.

I want to make the point that I don’t think everyone has B12 deficiency at all and that I’m fully aware of its shared symptoms with other common conditions, but I can’t help but say when I see a situation where I feel it should be confirmed or ruled out.

We were sat in traffic the other day and I saw a super market lorry go by it’s sides featuring an ad with a smiling model. I could see her swollen tongue, it’s sides were indented just like mine gets when I need my injection . So naturally, I want to find her and tell her to get checked .

A friend of mine who is type 1 diabetic and a solicitor, was struggling at work through total exhaustion, she also had numbness and tingling in her hands and feet which the GP had of course told her this was due to diabetic neuropathy. (Why wouldn’t he? He’s never been fully trained in B12 deficiency). I nagged her to get tested. I knew she wanted a family and I couldn’t bear the potential that her fertility might be affected.

I was so happy that once her results were in, the Practice rang and asked her to go urgently for her B12 injections.

My grandma had a diagnosis of PA but my mum, who to me had a multitude of symptoms, was attributing those she recognised she  had, to pre-existing conditions. This is of course completely natural but very frustrating for those who recognise themselves in the one they are trying to help.

Breathing difficulties can be put down to asthma, COPD etc,

Back pain to wear and tear,

Incontinence to pregnancy,

Depression to work or family situations,

Tinnitus to loud music or noisy work environments

IBS to stress  – I could go on and on, and of course these can all be factors – but, what if they all improved with the right frequency of B12 injections?

Very often it’s quite clear that undiagnosed B12 deficient patients don’t recognise their own symptoms, it’s those around them who see that they are irritable, apathetic, depressed, and it’s when we are so poorly that we don’t want to be told we might have a ‘condition’. Certainly not one that requires injections.

The person you are trying to help might feel picked on or pressured to do something that they simply can’t tackle and they may feel totally out of their depth in discussing this alien subject confidently with a doctor.

They may get angry when you mention B12, they want you to stop badgering them and they may well decide that the doctor must know best.

I suggest you keep your B12 radar on but perhaps only say “I think you should have your B12 checked” just twice and then leave it.

If you can.

It will be very hard.

You will feel like you want to explode.

You will want to shout from the top of your lungs.

I’m finally learning that sometimes less is more, although I do feel as though I’m fit to burst each time I’m confronted with somebody who has a tremor, mania, stroke etc and has not had B12 deficiency either confirmed or ruled out or who is only receiving three monthly injections it still gets me – really gets me, and I ramp it up again. I’m sorry, I can’t help it.

What is astounding to the newly diagnosed and correctly treated, is the incredible flowering of their personalities, the clearness of their minds, the lifting of depression and an all round improvement in their well being. Their renewed ability to move more easily and have stamina where they thought it had gone for good and it’s only then, when we sigh with relief that the nagging – (even though it’s taken umpteen years), can stop because finally your loved one is safe B12 wise.

I have never managed to mention B12 just twice yet – but I am working on it.

The message is never give up, keep your B12 radar on but use your judgement on how far you can push it with your friends and family. At some point (and it may be years in the future) they will be grateful for your persistence.

So really this post is an apology to anyone out there who has wanted to gag me, but it’s also a message to everyone like me who does this – that we want everyone we’ve driven to distraction, to know that all the nagging comes from a place of love and care.

It’s also a thank you to Damian, who has never once told me to shut about B12 deficiency and helps this cause immensely.

And for all those who can get their loved ones to read this post – they may want your help in getting to the place where you are.

Wishing you all the very best.

Tracey x

 

Sally Pacholok mentions this phenomena in Could it be B12? An Epidemic of Misdiagnosis

Pat Kornic’s open letter may help to share with your families too.

A huge thank you to Dr Marjorie Ghisoni, who gets what I do and why I do it! Read here.

If you think you may be B12 deficient PLEASE DO NOT supplement before testing. Please see this page and use it as your crash course!

 

 

 

 

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

 

A year to the day – looking out for the elderly……

Jasper

You may remember our beloved poster boy Jasper, passed away peacefully on the 23rd of May last year and that he did in fact become B12 deficient toward the end of his life.

Remember, for us humans, there is no clinical evidence for 4 injections a year, your GP may not be aware of this.

Jasper was given B12 injections by the vet without any fuss at all because he fully understood how B12 deficiency can effect animals.

His lovely image will continue to help us to raise awareness of B12 deficiency.

Paul

On the same day last year I attended the funeral for our case study, Paul. Paul, like Jasper, couldn’t remember where he lived. His wife Evelyn was distressed seeing the early stages of his failing memory and odd behaviour. Paul wore a beard but bought countless electric shavers and insisted these stayed plugged in and fully charged at all times despite never being used. Paul did not drink wine but insisted on buying case loads and emptying the fridge of all food in order that the wine they didn’t drink, could be kept cold. He started taking their poor old dog on mammoth walks, wandering far from home and being missing for hours.

There were many distressing situations surrounding Paul’s decline and, knowing that Paul had been on Metformin for his diabetes (a drug known to inhibit absorption of B12) for years and learning that B12 deficiency was the likely culprit for his confusion and related symptoms, Evelyn tried to alert the GP to the fact that Paul needed injections for his severe B12 deficiency. Unfortunately, the GP insisted Paul was being adequately treated with 50mcg oral cyanocobalamin tablets and he was given an Alzheimer’s diagnosis.

Paul’s decline continued as Evelyn was told in no uncertain terms not to bring any more information about B12 into the practice. Eventually Paul was found a place in a nursing home. Over time Paul became non verbal, aggressive and malnourished. Paul never had the chance for his nerves to recover, his doctor refused to look at the solid information offered and so did the nurses involved in his care. Evelyn was told repeatedly that the doctor ‘knows what he’s doing‘. She tried many times to access the treatment Paul needed but it was futile.

Evelyn and Paul in the 60’s

 

Evelyn

Earlier this year Evelyn passed away. She too had many B12 deficiency symptoms, she had been on thyroid medication for years and as you may be aware the two conditions often co-exist.

Evelyn eventually told me her thyroid medication had been stopped, she had been told that she no longer needed it. Bizarre?

By this point in her life, she hadn’t the strength or the inclination to challenge her GP, obviously it hadn’t worked out too well before. She didn’t want anyone else to either – until sadly it was far too late.

It is quite common for patients themselves not to want to challenge any health professional and to see family ‘help’ as interference. They might worry how any confrontation could lead to a negative impact on their care and don’t want to upset their doctor.

If you have elderly loved ones please try and advocate for them even if they say they ‘can’t be bothered‘ or ‘what’s the point?’ They will thank you for caring.

No one should be afraid of upsetting their GP if they are simply trying to access correct treatment by offering relevant information or indeed asking for information. There are advocacy agencies who can help, or find someone in your family who can be an effective spokesperson.

If any GP is making decisions which are odd, stopping essential medicine without any kind of explanation please talk to someone who can help, get a second opinion – you are important, your loved one is important and we all deserve good, compassionate care.

RIP Evelyn, Paul and Jasper xxx

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;