Make your comment count if your B12 injections are being stopped!

First of all THANK YOU so much for your signatures and sharing of our petition which asks if we can access our B12 injections OTC from a pharmacy.

Petition update: Last year Nicky Morgan my MP met with Dame Sally Davies about the petition and the lack of education our GP’s receive on B12 deficiency.
Dame Sally Davies then wrote to the then Chair of The RCGP (Royal College of General Practitioners) about the outcome of their meeting. In the midst of all this Brexit got in the way.

Dame Sally Davies then stepped down and so did the Chair of the RCGP.  So the communication chain here was broken.

Then we had a general election.

This meant that over 7 and a half years of work between myself and my MP had to start again. They were not allowed to keep past records from constituents so all that work and communication on their side was deleted.

You’ll appreciate how depressing this all was.

The work of getting the petition in front of those who can help us to change things did start again a few weeks ago when I met with my new MP Jane Hunt.

Jane has been involved from the very beginning as she was Nicky Morgan’s case worker. She has had to put up with 7 and a half years of me making a nuisance of myself regarding B12, so is fully primed and backs us all the way.

Please consider commenting or writing to your MP too.

This update is asking if you could take the time to comment on the blog posts below to state if you are being denied B12 injections due to #Covid19 or for any other reason. The reason for this is so that my MP can direct those she is working with directly to patient experience.

The problem with only commenting on FaceBook is that this moves quickly and gets lost. Your comments on the blogs give us a clear picture of what is happening to you and it gives us a permanent place to show those who can make change.

If we could buy B12 ampoules from UK pharmacies and self inject this would save millions for the NHS, take pressure off GP Practices and people with B12 deficiency could be in charge of their own healing.

Obviously in the midst of Coronavirus NHS and GP services are under huge strain.
Many are being told their essential injection appointment is cancelled, if all our MP’s and health agencies can work together then maybe we can make change in the not too distant future by making injectable B12 available over the counter.

So please comment here;

If you are being denied treatment due to Coronavirus please comment here;
https://www.b12deficiency.info/blog/2020/03/17/the-new-c-word/

If you are being given tablets instead of B12 injections due to GP’s lack of knowledge:
https://www.b12deficiency.info/blog/2019/07/26/wherever-we-are-in-the-world-we-are-all-in-the-same-boat/

If you are being told you no longer need B12 injections because your levels are normal:
https://www.b12deficiency.info/blog/2019/06/20/a-bizzarre-and-wasteful-practice-is-your-doctor-following-this-crowd/

The World Health Organisation has hydroxocobalamin listed as an essential medicine, we need B12 to live so let’s work together.

Finally, many of you have been asked to “chip in” financially by Change.org to get this petition in front of more people. That “Chip in” money goes to the very wealthy Change.org owners. It does not go directly to the cause you might be supporting. We can do the sharing ourselves without a cost to anyone.

Obviously any spare cash you have at the moment would be welcomed by food banks and the most vulnerable.

If in the future you want to support www.b12deficiency.info this can be done via the donation button at the foot of my website.

Thank you and take care
Tracey x

 

“YOU are JUST A WOMAN!”

 

What, no loading dose?
I have been helping someone in the county of Lincolnshire to access treatment and I can say with all honesty that it is THE most difficult and frustrating case I have ever taken on.

I have been told on two separate occasions that GP’s in this area don’t give loading doses as there is “no benefit to patients“. Once by a Practice Manager and once by a female District Nurse. Both are seemingly embarrassed about having told me this apparently ‘privelidged information’ about a certain (and hopefully small) group of GP’s.

The Practice Manager now denies saying it and the District Nurse’s superiors also deny it happens and yet the patient still remains ‘unloaded’.

Persistence…
I continue to dig around to get to the truth about this bizarre situation, so if you live in Lincolnshire and have not received your loading dose either, please consider getting in touch and giving me the name of your Practice and GP so that together we can make a change. (This goes for anywhere else in the UK too).

I have reminded the Practice of NICE Guidance. This states that a loading dose of 6 injections should be given and that this every other day frequency should be continued for those with neurological symptoms. This regime exists so that the patient has the best chance of recovery.

My help, or interference as this Practice sees it, is unwelcome and has fallen on deaf ears. Imagine a drawbridge being pulled up and port cullis being heavily dropped. This is arrogance, ignorance and stubbornness at an unprecedented level.

The Clinical Lead at the CCG (Clinical Commissioning Group), who is also a GP has said “the Practice were likely right in regards to their cautious approach” – Shocking! This wet comment smacks of a doctor not wanting to go against a peer rather than making sure (as they should do) that the patient’s needs are at the heart of the matter.

I won’t give up on this patient or on the wider situation, but my persistence causes some health professionals I’m dealing with to become angry …….

Belittling behaviour…
When I explained about the pointlessness of just one B12 injection for someone so severely affected the disgruntled District Nurse I mention above, loudly told me, “YOU ARE JUST A WOMAN!”  (I know, a shocking lack of sisterhood!)

So I agreed with her. Obviously it was meant as an insult, but agreeing with someone when they’re insulting you has a miraculous effect. It completely takes the wind out of the sails.

Essentially her statement was correct, I am just a woman;

Just a woman who cares 

Just a woman who wants to make change

But what the nurses statement was really saying was;

“you are ONLY a woman, you are not a nurse like me or a doctor, how can you know all these things and I don’t? How dare you make me feel inadequate?”

I understand her frustration. I understand her annoyance at not knowing about B12 deficiency, I’d be annoyed too…..she was however shouting at the wrong person, perhaps she should have been asking others around her why she hadn’t been taught more about this vitamin than how to give B12 injections.

It’s a fact that most people with B12 deficiency know more about their condition, how it affects them and how it should be treated than their doctor or nurse does. Wouldn’t it be lovely if this truth could be embraced and the patient’s knowledge tapped without the healthcare professional feeling inferior?

The reason that my site and others like it exist is because the teaching of B12 deficiency for those who need it is far too sparse and this needs to change.

Best wishes Tracey

www.b12deficiency.info

If you are a health professional and you and your colleagues want to learn more about B12 deficiency please click here.

If you are experiencing problems with accessing treatment;

For testimonials please click here.

Please note that the NICE link is unavailable outside of the UK.

 

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 
If you are experiencing problems with accessing treatment;
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

You can read testimonials here.

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.