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!

 

A serum B12 level can’t tell you how a patient is feeling, only the patient can, but why is no one listening?

Is your doctor allowing you to sink or swim?

How are you feeling? Are your symptoms improving? Do you need more frequent B12 injections……? These questions are very rarely asked of B12 deficient patients regarding their treatment. Too many patients remain ‘seen’ but not heard. Never heard.

Why has the medical establishment become so averse to listening to B12 deficient patients?  To treating symptoms and to acknowledging this fundamental nutritional requirement?  Why are we not offered the same listening ear as those with other conditions might be?

The patient is ALWAYS the expert on how they are feeling, not some serum B12 level or any maintenance guidelines which bear no relationship to the patient experience.

lifeboy-b12

Loss of a great relationship  

Any visit to the doctors can be an ordeal. You may be feeling, vulnerable, tearful, in pain, stressed, anxious and not wanting to waste the doctor’s time. But, the incredibly healing benefit of just ten minutes of really being heard, experiencing kindness and compassion and having a plan of action, is profound. We leave knowing our doctor is trying to help us. That ten minutes being reassured and cared for creates a phenomenal level of trust.

B12 deficient patients, in many cases, experience a completely different relationship with their doctor when requesting an increased frequency of B12 injections, finding that a couple of weeks after their injection their debilitating symptoms are back with a vengeance.

The very same Doctor who helped them through rough times, cared for them through pregnancy or trauma can become distant, defensive, unfeeling and even angry.  It’s as if an invisible wall is built,  eye contact is limited, and communication is almost strangulated. The usual empathy may be replaced by flippant, incorrect comments about B12 being a placebo, that B12 deficiency is ‘over diagnosed’ that people want too much, get addicted to it and that there is no evidence to suggest that it actually makes a difference! 

There’s an inability on the part of some GP’s to demonstrate compassion or understanding for a patient who is struggling to function on three monthly injections. The current situation means that some patients are able to function for only 8 weeks out of 52.  Many GP’s are refusing to treat symptoms, whilst concern with B12 serum blood levels takes precedence over common sense. Ignoring how the patient feels can lead to feelings of confusion, anger, desperation, and fear. What are they supposed to do?

Patient’s who are in pain, exhausted and confused need more B12, not less – but this fact is not understood by those who should be caring for us.

This ‘new’ attitude from the GP may cause fractures in, or even a complete death of their previous good relationship. For those patients who feel they’ve upset their doctor by asking for more B12 or who fail to articulate what they need it may mean that they will try to struggle on alone. This is a shocking and intolerable situation for a patient who previously had an excellent relationship with someone they completely trusted to care for them.

What usually happens in the UK ….

In the main GPs prescribe loading doses (6 injections over two weeks) and then automatically place patients onto three monthly injection regime regardless of the severity of their symptoms. This is very often done without discussion with the patient – in fact without any kind of consultation whatsoever. It might be a nurse who delivers this information and who sticks rigidly to the exact date three months later for the next injection. It is not uncommon for patients who try to have their injection a couple of days early only to be turned away distraught.

This situation can leave the patient bewildered about why their inexpensive injections are rationed, knowing their lack can cause widespread, permanent damage. This condition is so simple and easy to treat but B12 is withheld due to lack of education.

Patients restricted to 3 monthly injections are commonly offered strong painkillers, Gabapentin, amitriptyline, and other antidepressants, all manner of symptom modifying drugs in place of the vitamin needed to repair their nerves.  There’s something seriously wrong when a GP insists on exploring dementia in a symptomatic patient in their 40’s, rather than treating a B12 level which is just within range.

Retesting serum levels

Once a patient is being treated with B12 injections, it does make sense to check the serum B12 level in the beginning to confirm that the patient is responding to treatment. If there is a good response then no further testing is required. Continual retesting of serum levels prior to an injection (and in some cases just a few days after) is a total waste of time and money and it’s clear that some GP’s are mistakenly using a ‘within range’ result as a reason to stop B12 injections.

The sole reliance on B12 serum levels to decide whether a patient is well or not is entirely illogical given that many patients with a B12 level up in the 1000’s may still be experiencing incredibly painful and debilitating symptoms. They may be suffering from a failing memory, an inability to walk, to stay awake and terrible anxiety.

A high serum B12 level post injection is not showing any toxicity, it is also no indication of the level of nerve repair but repeatedly patients are told:

‘your levels are too high’,
‘we need to stop your injections until they come back down’
‘you no longer need B12……..’

There is a genetic problem which is thankfully highlighted by the NHS – ‘functional B12 deficiency,’  it would be helpful if our GP’s were all made aware of this;

http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Causes.aspx 

‘Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood. This can occur due to a problem known as functional vitamin B12 deficiency – where there is a problem with the proteins that help transport vitamin B12 between cells. This results in neurological complications involving the spinal cord’.

B12 is a water-soluble vitamin, the vast majority of the injection is excreted via the bowel and bladder within 24 hours. B12 has to be replaced frequently in order to aid recovery of the myelin sheath. Serum levels can remain high for up to four months, this does not mean there is an accessible reservoir of B12 sloshing around the body.

If your GP or nurse continually suggest retesting your B12 levels, ask why? And feel free to refuse unless there is any clinical need. You will be saving your blood and your time and that of your practice too.

• A very high serum B12 level without any supplementation obviously requires investigation and I often wonder if this is where our GP’s are getting mixed up?

Superior treatment for other conditions, a stark contrast 

If you are a diabetic patient, the overwhelming difference in the level of care is plain to see. You will be checked, monitored, consulted. You’ll have regular retinopathy and foot checks. You may be assigned a specialist diabetic nurse and you will be asked how you feel.

You will not have restricted medication, you will be taught and trusted to self inject, and you may even be sent on courses to learn about your condition.

In stark contrast, the majority of B12 deficient patients are discriminated against whilst requiring exactly the same care. All clinicians need to grasp the fact that B12 deficiency is a real and serious condition.

One size treatment cannot possibly fit all

As many of us know and feel keenly, four injections per year cannot correct the body’s starvation of B12, just as only four buckets of water a year wouldn’t help a tree in drought and only four breaths of air wouldn’t help a deep sea diver. One size cannot possibly fit all for many medical treatments.

Reports of widespread pain, poor memory, poor mental health, balance problems, deafening tinnitus, fatigue, and incontinence are totally ignored as if the patient is totally mistaken about the state of their own health. If they happen to have existing diagnoses of fibromyalgia, depression, CFS, diabetes (etc) or they’re menopausal or even a new mum – their symptoms may be attributed to these conditions instead of being recognised as under treatment of B12 deficiency.

B12 injections are safe, life saving, non-toxic and inexpensive. There is no clinical evidence for this restricted regime, it is entirely based upon cost saving audits.

Bizarre letters stop B12 treatment

You can see the situation which affects so many patients from this letter below. These letters which stop vital B12 treatment, are randomly sent out and are expected to be met with compliance despite the fact that without any solid evidence or consultation, it has been decided the patient can miraculously absorb and utilise B12.

tracey letter

The statement “Evidence has come to light that in many cases B12 injections are given too easily, or are inadvertently continued after the loading dose injections.” is ludicrous.

I hope that recipients of these letters ask to see the source of this ‘evidence’ and I wonder what it is. The idea that B12 injections are ‘given too easily’ is a bizarre comment given that so many patients probably feel that completing the Krypton Factor, running ten miles through quicksand whilst wearing high heels two sizes too small, might be an easier challenge than ‘qualifying’ for an essential vitamin injection.

There may be some odd formula for sending out these letters – there is no clue as to why this practice have decided the patients can now absorb B12, what test they used. Perhaps a mistaken reliance upon post injection serum B12 levels to determine that patients have enough B12 and are now ‘cured’ – perhaps even picking names out of a hat?

They state “we need to prove that people cannot absorb the carrier across the stomach membrane.”  The sentence itself doesn’t make sense. What is the ‘carrier’? Do they really believe that by simply telling the patient “You are one of a cohort of patients who have been tested and should be able to absorb B12” the job is done?  They are placing the onus on the patient to prove they can’t absorb B12 without any discussion whatsoever.

There seems to be a movement towards only treating patients who are confirmed to have pernicious anaemia, (this may be what this letter is about). This is totally ridiculous given the many causes for B12 deficiency. Each is serious and each requires treatment by injection unless the deficiency is of proven dietary lack. The reality is that the test for pernicious anaemia (Intrinsic Factor antibody) has low sensitivity resulting in many false negatives. This information escapes too many GP’s.

The sad fact is that some who receive these letters will believe what is written – or may not have the strength to fight for their health.

Deterioration caused by B12 deficiency is slow and insidious, it takes a while to repair the fatty coating of the nerves (myelin sheath). Six injections over two weeks cannot possibly reverse all the damage in every patient even though we all wish they could.

Me and millions of others would be ecstatic to find that suddenly we really could absorb B12 simply because we received a letter saying so – but this letter and all the others like it are complete poppycock, not to mention harmful. As usual in B12 deficiency, the PATIENT IS NEVER CONSULTED, everything is decided without their input.

Oral supplementation for patients who cannot absorb B12 from food would be a futile exercise. We urgently need our clinicians to understand that this can lead to permanent neurological damage, raising serum levels but allowing deterioration to continue.

This letter states that: “If you are taking folic acid then it’s important to take vitamin B supplement to prevent damage” the author is apparently ignorant of the harm that will follow without B12 injections.

The one sensible statement included in the letter is that vitamin B12 “is water soluble and therefore not dangerous to take in excess,” very refreshing.

It is vital that all primary care doctors, nurses ,midwives and specialists in all areas of medicine are educated about the seriousness of B12 deficiency and the fundamentals of nutrition.

If our doctors are unable to feel that they can take clinical responsibility for frequent B12 injections (even though this is what is stated in both BNF and NICE Guidelines) then it becomes even more urgent that UK patients are able to buy injectable B12 over the counter in order to look after their own health.

Isolation and hopelessness

There are many things that patients who are B12 deficient can’t understand about the way they are treated once they become diagnosed with vitamin B12 deficiency.

Of course some doctors do treat their patients correctly and fully support individualised treatment. For the rest, B12 is restricted and the battle for treatment begins in those who have the strength and/or the support of loved ones.

Some patients believe their GP is correct when told that too much B12 would be harmful.  Others feel forced to accept the situation because their partner or family member insists the GP must know best, finding themselves totally isolated and without hope.

Nobody wants to have to fight for health especially when they are on their knees, mentally and physically.

If you are a patient who needs more B12 and face the challenge of requesting this, taking somebody with you to the doctors for support can be invaluable. Just a squeeze of a hand and reassurance that you are not alone can make the world of difference when trying to communicate how you feel in pleading your case. Writing down what you need to say will help you to remember all your points. The NHS constitution may be a useful tool to help in accessing better treatment for UK readers.

The very least a patient can expect is to be listened to and taken seriously. Ensuring that this happens would make the job of the GP easier and their overall workload lighter, saving the NHS millions. It would be interesting to know just how many appointments are taken up by undiagnosed or under treated B12 deficient patients. Now there’s a research project worth carrying out.

Are you in a situation where you are not being heard and feel isolated? Please don’t give up, join this fantastic support group where you will find help from so many members in the same boat.

REMEMBER this is your life, your health and YOU MATTER. You are the expert on how YOU feel, no one else.

Are you a doctor reading this, do you know how we feel?

How would you cope with your job, family, home if for  only 44 weeks out of 52 you were unable to function? Can you give us your side of the story? Anonymously?

If you can, please email in confidence to tracey@b12deficiency.info.

www.b12deficiency.info Twitter – @B12info Facebook

 

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

 

If you have CFS or M.E. you may be enraged if your B12 levels haven’t been tested ….

I have blogged about this before but it is worth revisiting because it is so shocking.

First of all please note, that if you have CFS or M.E., then your symptoms are also shared by B12 deficient patients. B12 deficiency symptoms can be reversed with B12 injections.

Secondly, the reason you may never have been tested for B12 deficiency may be because your doctor does not understand that macrocytosis/macrocytic anaemia (large red blood cells) is NOT ALWAYS PRESENT in B12 deficiency. In fact it can be very late stage when damage has already been done. This obsession with marcrocytosis is the focus of these harmful instructions to doctors.

The following screen shots are of NICE Guidelines – ‘Do not do recommendations’ for CFS/M.E.  It is a really tricky page to find (and has a habit of hiding) so here is the link;

https://www.nice.org.uk/donotdo/tests-for-vitamin-b12-deficiency-should-not-be-carried-out-unless-a-full-blood-count-and-mean-cell-volume-show-a-macrocytosis

For those who don’t know :-
NICE’s role is to improve outcomes for people using the NHS and other public health and social care services. We do this by:

  • Producing evidence based guidance and advice for health, public health and social care practitioners.

Taken from; https://www.nice.org.uk/about/what-we-do

There are other bullet point’s on this page but here they state ‘evidence based guidance ‘. I’d like to know what evidence backs up this particular set of DO NOT DO RECOMMENDATIONS for CFS and M.E. patients. I bet you would too.

There are many scenarios on this list which may be of interest to you but I am concentrating on the four which are connected to B12 deficiency. The date of all these recommendations is August 2007.

The first reads – Test for vitamin be 12 deficiency should not be carried out unless a full blood count and mean cell volume show a macrocytosis.


Screen Shot 2015-10-14 at 10.06.47

The second; Tests for folate levels should not be carried out unless a full blood count and mean cell volume show and macrocytosis.

Screen Shot 2015-10-14 at 09.59.49

No 3;  Tests for ferritin in adults should not be carried out unless a full blood count and other haematological indices suggest iron deficiency.

Screen Shot 2015-10-14 at 09.59.36

And finally; There is insufficient evidence for the use of supplements such as vitamin B12, vitamin C, coenzyme Q10, magnesium NADH (nicotinamide adenine dinucleotide) or multivitamins and minerals for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and therefore they should not be prescribed for treating the symptoms of the condition. However, some people with CFS/ME  have reported finding this helpful as part of a self management strategy for their symptoms.

Screen Shot 2015-10-14 at 09.59.22

Sinister?

Many clinicians incorrectly believe that B12 deficiency always goes hand in hand with anaemia. This ignorance is reinforced by NICE Guidelines despite the wealth of journals stating the opposite.

You will see that all the symptoms of CFS and ME are also those of B12 deficiency http://www.b12deficiency.info/signs-and-symptoms/

This misunderstanding causes patients harm. Many patient’s never present with or experience macrocytosis (large red blood cells).

It may be a very late sign in B12 deficiency and the MCV can appear normal in a patient taking high doses of folic acid. How many B12 deficient pregnant women remain undiagnosed?

See here from the NHS;

http://www.nhs.uk/conditions/anaemia-vitamin-b12-and-folate-deficiency/pages/introduction.aspx
‘Some of these problems can also occur if you have a deficiency in vitamin B12 or folate, but do not have anaemia.’

 There are many journals on this;

2012. Misdiagnosed vitamin B12 deficiency a challenge to be confronted by use of modern screening markers
(….”but its absence does not rule out B12 deficiency and it is not a specific marker as using it solely would miss 84 percent cases. Its normal range is 80-96 fl.20 MCV can be within normal range despite B12 deficiency specially with concomitant iron deficiency,….)
http://www.jpma.org.pk/full_article_text.php?article_id=3808

1995. Neurological complications of acquired cobalamin deficiency: clinical aspects.(“Pharmacological doses of folic acid reverse the haematological abnormalities (eg a MCV) of Cbl deficiency. This may allow neuropathy to develop or progress and make recognition of deficiency more difficult. “)
http://www.ncbi.nlm.nih.gov/pubmed/8534966?dopt=Abstract

To read more of these journals – or, perhaps we could call them EVIDENCE, please click to see the information compiled by @B12unme
http://www.twitlonger.com/show/n_1s0ae7m

If you have been diagnosed with fibromyalgia too, you may be very interested in this study which uses B12 and folate as treatment; ‘Dose-response relationship and long-lasting effects of B12/folic acid support a true positive response in the studied group of patients with ME/fibromyalgia.’
http://www.plosone.org/article/fetchObject.action?uri=info%3Adoi%2F10.1371%2Fjournal.pone.0124648&representation=PDF

If you have never been tested and suspect a B12 deficiency please see; http://www.b12deficiency.info/what-to-do-next/

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

Please consider signing and sharing this petition https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

Best wishes

Tracey

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 particular 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, an enormous medal!

During the appointment I attended, we challenged the GP when it was stated that, for this patient, B12 injections would be ‘Off License’.  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