‘The tank’s empty but I can smell petrol so you have 90 days more driving ahead of you’ …..

If this advice were given by a garage we’d know they were kidding –  but a similar instruction is given in the UK to too many B12 deficient patients regarding their treatment.

NICE and BNF Guidelines advocate a maintenance dose for patients with neurological symptoms is one injection every two months. This is very often ignored and a move straight to a three monthly maintenance dose (after a 6 injection loading dose), is the norm. This is based on NO CLINICAL EVIDENCE whatsoever yet it appears to be set in stone.

I have spent quite some time trying to find the research for the bizarre idea that four B12 injections per year as a maintenance dose is ‘optimal treatment’, since this restricted regime harms those who are in dire need of a nutrient their systems are starved of. The term ‘optimal treatment’ is used to describe our quarterly maintenance dose in a series of GP audits which I blogged about earlier this year.
It was decided that district nurses time could be saved by lessening the frequency of B12 injections given, so this was eventually adopted nationally without any care for the patient. Our UK maintenance dose guidelines are based on cash saving exercises.

At the end of this blog post are the replies I have from various agencies; NHS England, Public Health England, Health Select Committee, British National Formulary, NICE, to the question;

“Please can you show me the clinical evidence which states that the three monthly maintenance dosage for B12 deficiency is optimal treatment.”

You will see that everybody addressed passes the buck and thinks that someone else has this elusive information which so many doctors adhere to. The emails take a circular route which, of course, yield no result whatsoever since there is no clinical evidence.

In a letter to my MP, Sir Bruce Keogh of NHS England stated “Most patients respond well to quarterly injections”, but where is his source?

It’s quite obvious that a great many patients do extremely badly on 3 monthly injections. Patients who email me with the subject line; ’Desperate’, ‘please help’ or ‘Am I going mad?’  And the 1000’s of members of online support groups are also testament to this.

A serum B12 level can show as ‘within range’ for weeks or even months after a single B12 injection or even a single oral supplement.  This can fool doctors into thinking there is plenty of B12 circulating and available to draw upon when, in reality, there isn’t any B12 available to the patient.

If you want to understand the complexities of B12 deficiency then this document on the enterohepatic circulation of B12 will help.

This is what Kevin Byrne (author of the above) states –

“The problem arises when you start to believe that the damage accruing from a long term deteriorative process can be fixed with a handful of injections, and when you take serum levels as a direct measure of the functioning of a distant, complex organic process.”

Many clinicians do not understand that;

• When a B12 injection is given, the majority is excreted via the bladder & bowel within 24 hours.
• B12 is water-soluble, non toxic & costs pennies.
• Progression of nerve damage is inevitable in patients who are starved of B12.
• B12 is vital for life, is required to produce healthy red blood cells and for DNA synthesis.

Both patients and clinicians are being led up the garden path;

The vast majority of GP’s are not fully educated on this very common, debilitating condition and they think they are advising patients correctly based on the limited information they were taught.

There are enlightened doctors who know that 3 monthly injections are a tortuous proposition for many patients they see and they treat appropriately by symptoms.

Worryingly there are also doctors who are informed, who want to treat patients appropriately but feel their hands are tied, either by their colleagues or by even more restrictive ’practice guidelines’ which appear to take precedence over National Guidelines. Or, these doctors are terrified of being reported to the GMC for ‘unusual prescribing’, quite bizarre when what we are discussing is a non toxic essential vitamin.

Evidence of this clinical evidence is nowhere to be found, It simply does not exist. It is a myth generated to save time and money and has had the opposite effect, costing the NHS and in turn society, millions if not billions of pounds. This is due to the inevitable misdiagnoses that occur when doctors fail to understand that four injections a year will never be enough to heal damaged nerves in many patients.

Trying to put a forest fire out with a teaspoon of water would be just as futile.

What other group of patients with a serious debilitating condition would be subjected to the same illogical and harmful treatment regime?

Whilst the vast majority of clinicians lack up to date knowledge of B12 deficiency & whilst treatment of this condition remains so illogically and harmfully restrictive, it becomes even more essential for patients to be able to access injectable B12 over the counter in the UK.

Patients don’t want more injections than they need, they just want to be able to function and get on with life. It is time once again, to shine a very bright light on exactly why UK patients are kept chronically ill and unable to work on this ridiculously low frequency, based on no clinical evidence whatsoever.

If you are in the UK, you can help by sharing this information with your MP and by asking them to contact my MP, Nicky Morgan (nicky.morgan.mp@parliament.uk) so that they can work together on this urgent issue.

Many thanks Tracey
www.b12deficiency.info

Emails below;

To: Health Committee <HEALTHCOM@parliament.uk> (Dr Sarah Wollaston)
Subject: Re: Clinical evidence for B12 treatment

Dear Victoria

Thank you for your email and the link. However you misunderstood my question. I am asking for “clinical evidence” not “clinical guidelines”.
Please can you point me in the direction of the clinical evidence that states that a three monthly maintenance dose of a 1ml b12 injection is optimal treatment for B12 deficiency? I recall Sarah stating to one of her constituents that she is aware of this evidence.

Best wishes
Tracey
www.b12deficiency.info

Health Select committee (Dr Sarah Wollaston)

<HEALTHCOM@parliament.uk> wrote:

Dear Tracey

I have asked Sarah’s office but unfortunately between us all we can’t track this information, you will need to contact NHS England/Department of Health.

Sorry I couldn’t help.

Best wishes

Victoria

Public Health England;

Hi

Thanks for your email to Public Health England. This falls outside our remit, however we are unsure who you should approach. It might be something NHS England can help you with.

Regards

PHE Enquiries.

NHS England:

Dear Tracey

Thank you for your email of 8 August within which you requested information about the clinical evidence regarding the two and three monthly maintenance doses for B12 deficiency.

NHS England is unable to advise regarding this matter and it is recommended you contact National Institute for health and Care Excellence. Contact details are available at: https://www.nice.org.uk/guidance
Further information regarding B!2 can be reviewed at: https://www.nice.org.uk/search?q=b12

I am sorry I am unable to assist you further and trust the information above is sufficient to progress your enquiry.

NICE;
(Please note I cut a whole load of this enormous email out to save you falling asleep – It was the text from the page highlighted)

Dear Tracey

Thank you for contacting NICE.

NICE produces a range of guidance and information products, including clinical guidelines, which are recommendations on how healthcare and other professionals should care for people with specific conditions. Our clinical guideline topics are referred to us by the NHS England. I can confirm that we have not been asked to develop a guideline relating to the care of people with B12 deficiency.

I believe that the resource that you have located is clinical knowledge summary (CKS) on Anaemia – B12 and folate deficiency. CKS are developed by an external company and we work with the publisher to make them available on the NICE Evidence Services website, as a source of advice for health professionals working in primary care, while they may refer to NICE guidance (if there is any that is relevant), they also use many other sources. It is important to note that they do not constitute NICE guidance.

The evidence behind the recommendations in the CKS is presented underneath the recommendations under a subheading ‘Basis for recommendation’. I hope this is helpful.

Kind regards
Janet

(I didn’t find it helpful obviously, they point towards lots of journals who don’t have the evidence we require and to the BNF; here is their response below; )

BNF British National Formulary

Thank you for your email to BNF Publications.

Unfortunately we are unable to access our archives to check what evidence base was used to determine the 3 monthly dosage of hydroxocobalamin.

BNF content will be reviewed in line with the SPCs for future updates of the BNF.

Kind regards,

BNF Publications

You will see from my previous blog on this subject that I also asked all the Marketing Authorisation holders  who provide injectable B12 in the UK where their evidence for the three monthly maintenance dose came from and each of them drew a blank too.

http://www.b12deficiency.info/blog/2016/02/16/uk-b12-deficient-patients-paltry-3-monthly-maintenance-dose-of-b12-injections-is-based-on-cash-not-care/

 

I met Jane Ellison MP in Parliament last week…..

Jane Ellison, Public Health Minister and two advisors kindly spent time listening to the issues facing B12 deficient patients when I met her along with my own, very supportive MP, Nicky Morgan.

I chose to petition Jane as her ministerial responsibilities include; dementia, diabetes, children’s health and school nursing, long-term conditions, health visiting, NHS health checks, preventing avoidable mortality etc. All these categories and more relate to B12 deficiency.

Surprisingly Jane Ellison said that in three years in post she hadn’t heard anything about B12 deficiency and therefore all that I delivered was new to her!

I spoke about the 18,000 odd signatures on the B12 OTC petition, (this asks for our B12 to be made available to purchase over the counter from pharmacies, to bring us into line with so many other countries)  each time it’s signed an email is sent to both Jeremy Hunt – Secretary for Health and Dr Sarah Wollaston; Member of the Health Select Committee.

I spoke about my own personal experience of B12 deficiency and why I feel that both petitions are so vital to the lives of so many who are as yet undiagnosed and those who are currently under treated. I spoke about the 20,000  visits per month to my website of which over 50% are from the UK.

We are all aware that this is a worldwide problem and not just a whine from a disgruntled handful of patients.

I was not allowed to take a paramedic to the meeting with me who would have relayed that around 80% of the calls she attends to are made up from those ‘at risk’ groups; elderly patients who fall, mental health patients, and patients with chest pain.

I also spoke about the petition I have addressed to Jane Ellison herself (to add screening for both B12 and folate to be added to a full blood count) and I left her with some of the many comments left by signers who detail their own delayed diagnosis or misdiagnosis of B12 deficiency. I also spoke about the low reference ranges of the serum test and of the need to treat patients by symptoms.

It remains to be seen whether or not she is convinced that we have a problem.

Jane Ellison will however, follow in many of our footsteps and write to NICE and to the RCGP and other NHS departments following our meeting. Perhaps a letter from a Minister will make the difference?

I will update you when I hear anything.

I know that so many UK patients have met with or written to their MP’s and to NICE and frankly, to anyone else they can think of who may have either clout or heart.

I hate to ask you again – but for those of you who can muster the energy to contact your MP, please ask them to raise the issues and concerns you outline with both Jeremy hunt MP and Jane Ellison MP then perhaps we can help them to understand the strength of feeling that patients have and the desperate need for change?

If you have already done this, could you please make sure your MP has forwarded the information onward too?

Thanks to all of you who have already emailed me the names of your supportive MP’s. My MP Nicky Morgan will have contacted them – it doesn’t mean they have engaged unfortunately but you could ask!

If we all work together on this, we can make a difference.

Al the best, Tracey

When you can’t remember where you live, or who loves you…..

Our poster boy Jasper has been showing the signs of his advancing years.  He was a rescue so we can’t be sure how exactly how old he is, but he’s at least fifteen.

His eyesight and hearing have been deteriorating for a while so we clap to get his attention. People seeing this think we are congratulating him rather that trying to communicate where we are!

A few weeks ago he suddenly stopped being interested in food, he was noticeably confused, he stopped barking, or making any sound at all.

 

dooby-b12-text-version

He has always loved a particular fluffy sheep toy but he no longer recognised this previously constant companion.

He wanted to be outside a lot, but then could not find his way back in, he would stand in one spot under a tree or would stare at the wall vacantly. He failed to recognise us.

His eating habits completely changed and some days he turned his nose up at everything offered. His co-ordination was also affected and at times he struggled to stand up.

He was very distant and for a normally loving and friendly dog this was a real shock.

Three weeks ago our vet came out to assess him and check he was not in any pain and confirmed he was showing signs of senility.

The first thing the did, was give him a B12 injection.  Stating that he could have these when required.

The following two days were much the same as before but on the third day, we were astounded. He wanted to eat, he was happy, he had stopped wanting to be apart from us, he barked and found and chewed on his old friend the sheep!!  He still moves like an elderly dog, he still can’t see or hear too much – but the essence of him is back.

Of course B12 is not the answer to every ill. It is however essential to life and for those who are deficient, whose systems have been starved of it, it can have a miraculously swift effect. This is what B12 does for those of us in need, it gives us our essence back.

Don’t all dementia patients deserve this chance, before it’s too late – just in case?

B12 deficiency is very common in the older population, for many reasons; one being low stomach acid, not helped by the over medication of PPI’s and other acid suppressants.

There is no routine screening of so many at risk patients and too many elderly B12 deficient patients may be missed when there are guidelines for doctors like these below;

Wouldn’t it be lovely if our doctors were not constrained by such ridiculous and out dated instruction?

The name ‘Pernicious anaemia’ confuses doctors – many patients NEVER present with anaemia/macrocytosis – this is very late stage. NICE and BNF Guidelines still categorise B12 deficiency under anaemia and this needs to change.

Thankfully our vet did not have to concern himself with proving Jasper was anaemic, he didn’t have to wait for a B12 serum test, he knew that this kind of presentation in an elderly dog could be down to B12 deficiency and his injection was given without any hesitation. He can also have B12 injections regularly without any quibbling.

If only B12 deficient humans, of any age, could be treated in the same sensible way as this little old fella, the world for them would be so much less confusing.

For those who may be B12 deficient please see this page;  www.b12deficiency.info/what-to-do-next/

If you feel strongly about the restrictions on our B12 treatment please sign and share this petition

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

If you believe B12 & folate testing should be added to a Full Blood Count please add your name to this petition too.

www.change.org/p/jane-ellison-mp-parliament-uk-add-testing-for-b12-deficiency-to-a-full-blood-count-help-to-stop-permanent-disablement

 

Many B12 deficient patients would prefer ‘a dogs life’ when it comes to treatment

dooby-b12-text-version

Vets have a greater knowledge of B12 deficiency than the average GP.

Jasper wouldn’t be misdiagnosed with fibromyalgia, CFS, MS, or bipolar (etc), in place of B12 deficiency.

He would not be given antidepressants for B12 deficiency induced depression.

He wouldn’t be considered to be a lazy hypochondriac.

He would have all of his symptoms taken into account and his improvement would be monitored.

He would not have to cry and plead for his B12 injections, or involve his MP. Shouldn’t humans be treated with the same level of respect and care?

I continue to work hard on the petition and I need some help please;-If you have written to your MP about your deficiency or the OTC petition https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

please could you let me know their name in order that we can get all our MP’s to work together.

My MP has promised to help all she can, but there is strength in numbers so please get in touch either at;

www.facebook.com/b12deficiency.info?fref=nf
or tracey@b12deficiency.info.For more info/research see below;-http://vetmed.tamu.edu/gilab/research/cobalamin-informationhttp://www.ncbi.nlm.nih.gov/pubmed/23535754/
J Am Anim Hosp Assoc. 2013 May-Jun;49(3):197-203. doi: 10.5326/JAAHA-MS-5867. Epub 2013 Mar 27. Clinical and laboratory findings in border collies with presumed hereditary juvenile cobalamin deficiency.
Lutz S1, Sewell AC, Reusch CE, Kook PH.http://www.ncbi.nlm.nih.gov/pubmed/1848001
Pediatr Res. 1991 Jan;29(1):24-31.
Inherited selective intestinal cobalamin malabsorption and cobalamin deficiency in dogs.
Fyfe JC1, Giger U, Hall CA, Jezyk PF, Klumpp SA, Levine JS, Patterson DF.

Reply to my email request for information;-

Dear Tracey,

Thank you for your email question. As you know our understanding of the role of vitamin B12 in dogs is far from complete, but there are several clinical diseases in which we know deficiency may occur. During our undergraduate Course, students will be taught about vitamin B12 in several modules eg nutrition and gastroenterology, as well as on clinical rotations when they see cases in practice.

If deficiency is present recommendations for dose rates vary but usually weekly injections are given for several weeks.

I hope this is helpful

BVetMed CertVR CertSAO FRCVS
Associate Professor in Small Animal Clinical Practice

B12-life-logo

Please make our life saving injectable vitamin B12 (hydroxocobalamin) available over the counter.

Please sign and share this petition as far and wide as possible wherever you are from. You will be helping to save lives.

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

 

Raising awareness – how YOU can help