Gloucestershire treatment algorithm is harmful and at odds with NICE

Gloucestershire is a beautiful county – but like the villages in Midsomer Murders, a potentially harmful place to live if you need B12 injections and your GP follows this Primary Care Management Treatment Algorithm. (4th section down).

How many B12 deficient patients are at risk of permanent damage in this area? How many struggle with poor mental health? How many are bed bound, confused, living in pain believing that their B12 deficiency is being ‘treated’ so wondering what on earth is causing their body and mind to feel like it’s shutting down?

There are threads on Twitter of doctors from Gloucestershire proudly sharing this treatment algorithm and feeling really smart because they were ahead of the COVID 19 curve in giving just about everybody oral B12 supplements.

It’s all in your mind…

I’ve heard of many patients being told that their debilitating symptoms can’t be due to B12 deficiency. That it’s more likely to be due to their age, their lifestyle, or the fact they have young children, or a stressful job, or – and this is the worst, that it’s all in their “imagination”.

So the long suffering patient is either sent to hospital to see every other Tom Dick or Harry in a network of ‘ologists’ often waiting months for appointments in order that it satisfies the urge of the GP to pin the symptoms on ‘something else’ because ‘it won’t be B12 deficiency causing the symptoms because your serum levels are really high at 200pg/ml.”

My own deficiency could have been ignored if I’d lived in this area. You’ll see they don’t appear to bother with people with serum level’s over 180pg/ml. I was diagnosed with a level of 216 (reference range of 220 -771). I wouldn’t even be worthy of the GP looking at the chart despite my many presenting symptoms. The problem of differing reference ranges of B12 levels has been well documented and the BMJ state that there is no ideal test and that the clinical picture is of utmost importance.

Terrifying isn’t it?

What’s really worrying about B12 deficiency and the way it is handled by those who have little knowledge of it, is that the patient very often starts off in the dark and then remains in the dark because they ‘trust’ that their GP is ‘all knowing’. They don’t consider that the information their GP has imparted is not complete, not properly informed, not helpful. They then deteriorate, but don’t question their treatment, don’t ask Dr Google, don’t seek more information because they have been either pushed down another path for a further red herring diagnosis or just simply ignored.

How to start treatment with B12 injections in Gloucestershire using this algorithm: 

  1. Your B12 has to be lower than 180pg/ml
  2. You must have neurological symptoms (on their list)
  3. You must have macrocytosis and anaemia
  4. You must be positive for anti intrinsic factor antibodies – (but after loading you will be put on oral tablets!)

But if you are not presenting with the list of ‘allowed neurological symptoms’ i.e. those recognised by your GP – and you have no anaemia (which by the way, is not always present and can be a very late stage symptom) then, even if your result falls between 150-180 – the GP is instructed to:

“Reassure the patient that this is unlikely to be of concern. Recheck serum B12 after 3 months, if still low, monitor B12 level every 6 months for 1 year and then annually for 2-5 years.” 

Now I’m no rocket scientist but even I know that this is pure bonkers. It still offers no treatment.

B12 deficiency comes in all shapes and sizes, with many causes and many symptoms

If I use my own case as an exercise of using this algorithm here: –
My level was 220, I had no anaemia, no IFA, no neurological symptoms that they list, but I was losing my memory, I had bowel and bladder problems, blurred vision, insomnia, anxiety, low back problems to name a just a few and yet I wouldn’t warrant treating. I dread to think how quickly I would have been confined to a care home with early onset dementia if I had been ‘cared for’ here.

Even if I had PA, if my GP had used this chart I would be placed onto oral tablets following the loading dose. This is complete madness. (Please see more on the low quality evidence on oral supplementation  here)

If my deficiency had been caused by malabsorption due to a drug such as metformin for diabetes I would have been advised to take calcium supplements or increase dietary calcium but would not be  given B12 injections in fact I would only be allowed B12 oral tablets. This is totally bizarre, misinformed guidance.

Where is the patient?

At no point does this algorithm suggest LISTENING to the patient or considering the clinical picture. The patient doesn’t exist here, just blood forms and it’s completely wrong.

The only tiny mention ‘people’ get here is the suggestion that buying oral supplements over the counter may be cheaper than the NHS Prescription charge. WOW.

This algorithm is at odds with NICE guidance and is a ridiculous home-made protocol which won’t work for the vast majority. It’s time for Gloucestershire to start following good practice for patients.

What NICE state:

  • 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

So what can be done?

If you are in Gloucestershire – (or anywhere else this is happening), why not take action to make change? Your voice counts and you absolutely matter.

Why not contact;
The Expert Patient Programme – (The EPP is an NHS initiative to improve the lives of those living with long-term conditions such as diabetes, Parkinson’s, lupus, epilepsy, ME, arthritis, fibromyalgia or heart disease). NHS Gloucestershire offers the Expert Patient Programme (EPP) which you can access by telephone on 0300 421 1623

B12 deficiency is a long term condition, you have a lot to offer, make sure you are represented! Get you voice heard here and ask for their help.

Healthwatch
You could also call Healthwatch Gloucestershire on 0800 652 5193 tell them your story, ask for their help in accessing correct treatment.

Write to your CCG, why not email your MP and maybe send them this blog? Why not ask your friends and family to do the same?

The BSH have recently bowed under public pressure let’s help Gloucestershire to do the same here, make your voice count!

Don’t let your GP take you down Folly Lane, there is no time for foolishness or delay in treating B12 deficiency, time is of the essence and you deserve every chance possible of repairing your nerves.

Very best wishes

Tracey
www.b12deficiency.info

If you think you might be B12 deficient please click here, and please try not to supplement before testing.

Please add your signature here if you would like to support making B12 OTC in the UK – Please DO NOT pay to sign! Any money given does not go toward the cause you are supporting.

 

B12 the Antidote – joining up the dots

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

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

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

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

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

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

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

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

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

 

East Lancashire NHS Trust – you win the trophy hands down, for dangerously low, lower reference level for serum B12 test, 110 – 914ng/L!

Just take a look at these results, which are being ignored by the GP (see previous post) and then have a gasp at that lower reference range, are you still standing?  NO?…. neither is the patient.  They remain exhausted with regular blackouts.

What are you doing to your patients East Lancashire NHS Trust?

How many Lancastrians have been misdiagnosed with other illnesses due to the almost impossibility of achieving a diagnosis of B12 deficiency under this Trust?

IMG_20140611_100402

 

East Lancashire NHS Trust need to identify all the inevitable misdiagnoses due to this incredibly low reference range – we thought Cardiff and Vale NHS Trust were bad but this really takes the biscuit.

Exactly how many patients have been incorrectly misdiagnosed with;

Alzheimer’s/Dementia?

Depression?

Chronic fatigue syndrome?

Fibromyalgia?

Multiple sclerosis?

M.E.?

Psychosis?

Bipolar?

Vertigo?

Congestive heart failure?

Chronic pain disorder?

Anaemia?

Autism?

ADHD?

How many babies fail to thrive?

How many children have a diagnosis of developmental delay, mental retardation?

How many metformin taking diabetics have their neuropathy incorrectly attributed to diabetes?

How many new mothers sectioned with post natal depression from inactivated B12 supplies?

How many benign essential tremors have automatically led clinicians to an incorrect diagnosis of Parkinson’s?

How many Strokes and heart attacks?

How many suicides?

East Lancashire NHS Trust we implore you to change this assay kit and re test all who have gone before and to screen all those patients who have left the GP’s office with nothing more than a diagnosis of hypochondria.

TAKE ACTION NOW – THIS IS SERIOUS!!

Please visit www.b12deficiency.info

http://b12deficiency.info/children-and-b12.html

Raising awareness; http://www.b12deficiency.info/how-you-can-help/

Please sign and share our petition

http://www.change.org/en-GB/petitions/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter

Best wishes,Tracey

The ‘Not so NICE’ NICE Guidelines

Do you have a diagnosis of CFS or ME?

It is widely documented that chronic fatigue is a symptom of B12 deficiency, it is also known that B12 deficiency can be misdiagnosed as CFS and ME.  It is also known that macrocytosis does not need to be present to be severely B12 deficient and yet this is what is stated in NICE Do Not Do Guidelines. ‘Tests for vitamin B12 deficiency should not be carried out unless a full blood count and mean cell volume show a macrocytosis.’

Treatment of CFS and ME

Nice guidelines

Misdiagnosis possible
If doctors strictly adhere to this guideline it could be causing many serious cases of B12 deficiency to go undetected.

Many doctors see NICE Guidelines as LAW, when they should be regarded as is a recommended practice that allows some discretion or leeway in its interpretation, implementation, or use.

In contrast the following NICE Guideline appears to be rarely adhered to . . . 

It states – ‘Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.’  Many of us have to fight to get the loading doses never mind the injection every other day which is so desperately needed.

This guideline further states – ‘Be aware that oral cyanocobalamin is suitable only for the small number of people with proven dietary deficiency of vitamin B12’. Sadly some with the condition are fobbed off with these useless tablets depite the fact that they are not deficient due to diet.

In an ideal world
What we need our doctors to understand is that, ‘not every patient or situation fits neatly into a guideline. A guideline may not cover every eventuality and each patient’s circumstance needs to be taken into consideration when a treatment or test is decided upon.’

It would be ideal if all doctors diagnose with the clinical picture in mind, and effectively use listening skills. We need them to be up to speed on all the symptoms of B12 deficiency and help those in desperate need of a correct diagnosis and the inexpensive treatment required. The new BNF guidelines now record the cost of Hydroxocobalamin as 55 pence.

Best wishes, Tracey
www.b12deficiency.info

If you are struggling to achieve a diagnosis or treatment and need a hand please: