Go away and die quietly, we’re busy

It is rare that I am lost for words – however, I expect after reading this, you might be struggling too.
The below text is a summary of a patient’s experience just last month. I am paraphrasing but the message is very clear. The quality of life of B12 deficient patients, at least to some doctors, simply doesn’t matter. Their pleading for help falls on deaf ears at this practice.

Are you sitting comfortably?  Here we go –

We had a meeting about treating your ‘normal’ serum B12 level of 334 with B12 injections but have decided that even though you tested positive to parietal cell antibodies years ago, that you are;

HEAVILY SYMPTOMATIC and can demonstrate that your;

7 cardiac arrests, 
One major heart attack, 
Pulmonary embolism, 
Over TEN lengthy stays in psychiatric hospital with added ECT treatment, 
A lifetime of complete exhaustion, 
Diagnoses of PND, CFS, fibromyalgia, ADHD, bipolar disorder, and, wait for it, – ‘Treatment resistant depression’ could all be directly related to B12 deficiency –

WE CANNOT POSSIBLY TREAT YOU WITH A HARMLESS, LIFE GIVING VITAMIN B12 INJECTION THAT YOU DESPERATELY NEED. 

We have decided that although we prescribe many chemical ’off license’ drugs to hundreds of people, including you, at this practice (and mainly to those patients with poor mental health), without batting an eyelid, that we cannot prescribe B12 injections to you because it would be considered to be ’OFF LICENSE’ and we might get slapped wrists.

We as a practice, are all sticking together in this so you have NOWHERE to go even though you have shown us there could be great risk to your health without B12.

We have completely ignored the NEQAS report you gave to us; 

http://www.ukneqas-haematinics.org.uk/content/News.asp?id=46
False normal B12 results and the risk of neurological damage (Please click for details)
“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

We have ignored the all the journals backing up your research.

We have also ignored the NHS website stating that many B12 deficient patients have within range results due to the inaccuracy of the serum B12 test;

http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Diagnosis.aspx
‘A particular drawback of testing vitamin B12 levels is that the current widely-used blood test only measures the total amount of vitamin B12 in your blood. This means it measures forms of vitamin B12 that are “active” and can be used by your body, as well as the “inactive” forms, which can’t. If a significant amount of the vitamin B12 in your blood is “inactive”, a blood test may show that you have normal B12 levels, even though your body cannot use much of it. There are some types of blood test that may help determine if the vitamin B12 in your blood can be used by your body, but these are not yet widely available.’

Instead of giving you HARMLESS, LIFE GIVING, B12 injections, we would rather you continue to take the countless, expensive and harmful drugs which we are completely happy to prescribe for you, despite your protestations that they don’t work. 

We are also completely happy with the labels we have given you, despite them being common misdiagnoses of vitamin B12 deficiency. 

We are rigid, we cannot muster any compassion or understanding and won’t do our own research, we simply can’t be bothered. We don’t care that you merely exist, have been chronically ill for decades and live less than half a life.

We do hope you understand our position? 

Now, can you run along and stop wasting our time? We are very busy and very important GP’s. We have lives to save, don’t cha know?
_____________________________________________________________________

Well what the hell do you do with that??

This patient is someone I know. I went to one shocking appointment with them.

I am completely astounded that this patient has the capacity to continue with life despite the trauma, pain and neglect they continue to endure.
This patient deserves care, compassion, understanding and B12, and quite frankly, a bloody medal!

During the appointment I attended, we challenged the GP when it was stated that for this patient, B12 injections would be ‘Off License’, but there was no budging this unfeeling, uncaring, unknowing, cardboard cut out.

Can anyone enlighten me as to why or how b12 injections can be considered ‘off license’ for a heavily symptomatic B12 deficient patient?

Can anyone from the medical profession explain why exactly, patients have to jump through hoops to achieve a diagnosis of vitamin B12 deficiency? The current rationale almost completely ignores symptoms and decides everything on a blood test which is proven to be inaccurate.

Why is it that other conditions have no diagnostic blood test and yet the GP and specialist are completely confident in diagnosing based upon symptoms alone?

How can any clinician feel comfortable diagnosing ‘lab test free’ conditions such as Fibromyalgia, bipolar, schizophrenia, CFS, ME, Parkinson’s and Alzheimer’s etc, without fully and I mean FULLY, ruling out vitamin and mineral deficiencies? It just doesn’t make any sense.

There is something gravely wrong here and this horrendous, cockeyed situation has to come to an end soon, surely?

Although some of us have GP’s who treat us well for B12 deficiency, the shocking case detailed here is not isolated and is a tale to be continued……..

 

If you too are fighting complete ignorance please find support here;
https://www.facebook.com/groups/174928999276739

If you think you may be deficient please use this page;
http://www.b12deficiency.info/what-to-do-next/

If you want to help us to cut out the middle men who don’t, or won’t care – please sign and share and shout about this petition to help us treat ourselves –

https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

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

See below for more information on the common use of ’unlicensed medicines’.  A particular worry is that Metformin is being used for the treatment of urticaria as well as PCOS. I wonder if these prescribers are checking their patient’s B12 levels since this drug drags them down by stopping B12 absorption from food? I bet they’re not.

http://www.nhs.uk/Conditions/Polycystic-ovarian-syndrome/Pages/Treatment.aspx

Metformin isn’t licensed for treating PCOS in the UK, but because many women with PCOS have insulin resistance, it can be used “off-label” to encourage fertility and control the symptoms of PCOS.

http://www.ipswichandeastsuffolkccg.nhs.uk/Portals/1/Content/Members%20Area/Clinical%20Area/Medicine%20managment/Drugs%20and%20Therapeutics%20Advisory%20Group/Share%20care%20agreements/Valprorate.pdf

Preparations available and licensed indications
Valproate is available in the UK as sodium valproate (Epilim), licensed for epilepsy and semisodium valproate (Depakote), licensed for the acute treatment of mania.
Even though, neither formulation of valproate is licensed for use as a mood stabiliser, there is a significant body of evidence supporting its use.

B12-life-web

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 diminished 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