Long COVID Treatment – Vitamin B12, Vitamin D and other vital nutrients

Long COVID and COVID Long Haulers

COVID has gripped many lives for more than a year now and in some countries, people with Long COVID are lucky enough to be treated with essential nutrients which the virus appears to deplete or to exacerbate a latent deficiency. 

So many are writing about this and I wanted to collect together some of these texts for those unaware of a potential way back to full health.

 

The UK

Unfortunately many people in the UK with Long COVID may only be accessing the following treatments: aspirin, steroids, antivirals, antibiotics, and anti inflammatories as detailed on the Patient info website.

This BBC news clip on the effects of #longCOVID (and the following two) feature: Dr Nathalie Mac Dermott, Louise Buxton and Sarah Wakefield, who may benefit from the information within this blog, so if you know them, please share.

You will see that the symptoms of B12 deficiency (and other nutrient deficiencies) and Long COVID very much overlap:

Long-term COVID-19 Symptoms in a Large Un-selected Population.

“The long-term symptoms most enriched in those with COVID-19 are anosmia, ageusia, difficulty concentrating, dyspnea, memory loss, confusion, headache, heart palpitations, chest pain, pain with deep breaths, dizziness, and tachycardia.” 

In my April blog it was also highlighted that B12 could be of help in treating COVID and since then more information has been gathered.

I hope the following offers an added pathway back to health for those experiencing the debilitating effects of Long COVID.

New to Vitamin B12 Deficiency?

If you read the following documents and feel that B12 deficiency could be affecting you, then if possible, please try not to supplement with B12 before testing. Then please see this crash course for more info on how to diagnose and treat B12 deficiency.

You may need B12 injections if you cannot absorb B12 from food and even very low dose B12 tablets can raise serum B12 levels to be ‘within range’ which may skew results and stop you accessing the treatment you need. Some countries allow purchase of injectable B12 from pharmacies but for those in countries like the UK that currently don’t allow this (which we want to change) then you may need a doctor to diagnose and then treat you with injections.

If you have already tried oral B12 supplements but your symptoms haven’t improved, make sure you ask for testing and let the doctor know to make sure the lab note that you have been taking B12. Do not wait to be clear of supplements for 4 months, there is absolutely no point in wasting time!

It’s key that your doctor understands that a within range result, coupled with symptoms should not be ignored as the clinical picture is of utmost importance. Make sure you get to see a copy of your results – you are legally entitled to them.

 

In the UK the NHS stated that Long COVID sufferers would be offered help at specialist centres:

Respiratory consultants, physiotherapists, other specialists and GPs will all help assess, diagnose and treat thousands of sufferers who have reported symptoms ranging from breathlessness, chronic fatigue, “brain fog”, anxiety and stress.

Perhaps NHS England and Professor Chris Brightling would benefit from the information in this blog?


Hypotheses and articles on Long COVID treatment 

 

Sally Pacholok

Undiagnosed Cobalamin Deficiency in the Face of COVID-19:  An unrecognized Comorbidity and Silent killer.

“People with undiagnosed vitamin B12 deficiency may be at a higher risk of dying from COVID-19. Not only does low B12 suppress one’s immune system making it harder to fend off infection and produce antibodies, but B12 deficiency also causes hyperhomocysteinemia, which in turn can cause dangerous blood clots (i.e. deep vein thrombosis, pulmonary embolism, stroke, and myocardial infarction).”

Dr Albert Mir

Please see Dr Albert Mir’s Hypothesis Jan 2021 version –
COVID-19 and vitamin B12. An important warning for the population.                          

COVID-19’s toll on the elderly and those with diabetes mellitus – Is vitamin B12 deficiency an accomplice?

“…The question on hand thus lies on whether managing B12 deficiencies will impact COVID-19 fatality outcome or recovery rates. Herein, we review the latest evidence that shows that B12 deficiency associates in multiple areas very similar to where COVID-19 exerts its damaging effects: immunologically; microbiologically; haematologically; and through endothelial cell signalling—supporting the hypothesis that B12 deficiency is a potential modifiable risk factor in our fight against COVID-19.”

Be well: A potential role for Vitamin B in COVID-19

“There is a need to highlight the importance of vitamin B because it plays a pivotal role in cell functioning, energy metabolism, and proper immune function []. Vitamin B assists in proper activation of both the innate and adaptive immune responses, reduces pro-inflammatory cytokine levels, improves respiratory function, maintains endothelial integrity, prevents hypercoagulability and can reduce the length of stay in hospital [,]. Therefore, vitamin B status should be assessed in COVID-19 patients and vitamin B could be used as a non-pharmaceutical adjunct to current treatments.”

Vitamin b12 Deficiency in Covid-19 Recovered Patients: Case Report.

“The link between immunity and nourishment is clearly known and special attention is being given to its role in the COVID-19 disease Vitamin B12 is one of the dietary requirements necessary in the treatment of coronavirus patients Coronavirus patients often show clinical symptoms, such as fever, cough, respiratory distress syndrome, gastrointestinal infection, and fatigue It is sensible to suppose that COVID-19 affects cobalamin metabolism, impairs intestinal microbial proliferation, and contributes to symptoms of cobalamin deficiency Such an assumption is based on the fact that there are signs and symptoms of vitamin B12 deficiency that are similar to those of a coronavirus infection Based on these observations, it can be inferred that treatment with vitamin B12 can be useful in the recovery of COVID-19 patient.”       

A potential Role for Vitamin B in COVID-19.

“However, SARS-CoV-2 could interfere with vitamin B12 metabolism, thus impairing intestinal microbial proliferation. Given that, it is plausible that symptoms of vitamin B12 deficiency are close to COVID-19 infection such as elevated oxidative stress and lactate dehydrogenase, hyperhomocysteinemia, coagulation cascade activation, vasoconstriction and renal and pulmonary vasculopathy. In addition, B12 deficiency can result in disorders of the respiratory, gastrointestinal and central nervous systems. Surprisingly, a recent study showed that methylcobalamin supplements have the potential to reduce COVID-19-related organ damage and symptoms.”                                                                                                                                                      

ERYTHROCYTES AS A TARGET OF SARS COV-2 IN PATHOGENESIS OF COVID-19

“Hemolytic anemia in COVID-19, which develops at the first stage as a reaction to the SARS COV-2 viral microorganisms, causes cascading reactions to toxic erythropoietin and hemoglobin released from erythrocytes in the bloodstream, and then to hemosiderin released due to the death of erythrocytes in the tissue. The process ends with a decrease in the synthesis of erythropoietin in the decaying liver and kidneys, in the absence of the necessary vitamin B12 due to the pathology of its secretion in the gastrointestinal tract. The characteristic signs of damage to red blood cells in conditions of infection with COVID-19 indicate disruption of erythropoiesis, with developing iron deficiency and B12 anemia.”   

Homocysteine as a Potential Predictor of Cardiovascular Risk in Patients with COVID-19.

“Since the beginning of the novel coronavirus pandemic, the scientific community is in urgent need for reliable biomarkers related to disease progression, in order to early identify high risk patients. In fact, the rapid disease spread makes it necessary to divide patients in risk categories immediately after diagnosis, to ensure an optimal resource allocation. The identification of new biomarkers is strictly related to the understanding of viral pathogenetic mechanisms, as well as cellular and organ damage. Trustworthy biomarkers would be helpful for screening, clinical management and prevention of serious complications.” 

Can Vitamin B12 be an Adjuvant to COVID-19 treatment? 

“COVID-19 has  become an international pandemic and is causing a  worldwide public health emergency; therefore, an effective treatment is urgently needed. The hypothesis is that Covid virus interferes with the cobalamin metabolism, causing  symptoms  of cobalamin deficiency.  This is  plausible to  infer,  because there  are symptoms  of vitamin  B12 deficiency  that  are similar  to  those of  COVID-19. These symptoms  include increase oxidative  stress, homocysteine concentration, activation of the  coagulation  cascade, thrombocytopenia, elevated lactate  dehydrogenase  (LDH), low reticulocyte count, intravascular coagulation thrombosis, vasoconstriction, renal and pulmonary vasculopathies, which can result in respiratory, gastrointestinal and central nervous system  disorders.  Research  shows  that  high doses of methylcobalamin  is the  treatment for  symptoms  of vitamin  B12 deficiency.  Thus, an  additional hypothesis  is that treatment with vitamin B12, especially methylcobalamin, would reduce Covid’s damage to infected patients. Hence, in this  review  article  it  is  suggested  that  methylcobalamin  (vitamin  B12)  may  serve  as  an  attenuator  to  COVID-19symptoms. Clinical studies are required to confirm this hypothesis.”                                                                                              

COVID19, COBALAMIN / B12 AND SEPSIS: A LEFT OF FIELD SOLUTION

“High dose parenteral Cobalamin as prophylaxis and treatment for Covid19 and Sepsis/ARDS.”                                                                                                                                        

Homocysteine and the SARS-CoV-2 Coronavirus – The X Factor of Severe Disease and Death.

“Homocysteine (Hcy) is a natural, non-essential amino acid formed by the de-methylation of methionine. Pathologic elevations occur in many chronic conditions, particularly the cardiovascular conditions common with aging, and in SARS-Cov2. The most common co-existing morbidities, hypertension, cardiovascular disease, and diabetes are all strongly associated with elevated levels of Homocysteine.”
    

Vitamin C, D, Folate (B9), magnesium, zinc etc.

Jerome Burne’s blog 12 Dec 2020  Pressure rises for Vitamin supplements to protect against the virus.

“For almost a year now the government and the NHS have been studiously ignoring the possibility that a highly plausible way of effectively combating the virus would be to ensure that everyone, especially those most exposed to it, had adequate levels of the nutrients vital for a well-functioning immune system, such as Vitamin D, Vitamin C, zinc and selenium. Now suddenly three things that might just make a difference, have all happened at once…”

And the following papers:

Possible Treatments for Covid-19 or LongCovid.

Topic: Which vitamins, minerals, and health supplements might help people who have suffered from Covid-19 and its aftermath for too long?                       

SARS-Cov-2/Covid/19 ADULT RESPIRATORY DISTRESS SYNDROME /ARDS: HIGH DOSE IV METHYLCOBALAMIN IS A SAFE & COST EFFECTIVE RESCUE TREATMENT for ARDS

“Abstract -A SAFE AND EFFICACIOUS PROPHYLACTIC /TREATMENT FOR COVID19, TO PREVENT AND TREAT ACUTE RESPIRATORY DISTRESS SYNDROME, ALREADY EXISTS: RESPECTIVELY using HIGH DOSE IM AND IV METHYLCOBALAMIN FORM OF VITAMIN B12. The hydroxocobalamin form of B12 has been used in ICUs in France, Italy and China for nearly 70 years, as the anti-CN antidote of choice. It is safe, licensed and available. Methylcobalamin would be preferable, for a number of research based reasons. But both could be life savers in the current health crisis.”                                                           

The Role of Folic Acid in the Management of Respiratory Disease Caused by COVID-19.

“Entrance of coronavirus into cells happens through the spike proteins on the virus surface, for which the spike protein should be cleaved into S1 and S2 domains. This cleavage is mediated by furin, which can specifically cleave Arg-X-X-Arg sites of the substrates. Furin, a member of proprotein convertases family, is moved from the trans-Golgi network to the cell membrane and activates many precursor proteins. A number of pathological conditions such as atherosclerosis, cancer, and viral infectious diseases, are linked with the impaired activity of this enzyme. Despite the urgent need to control COVID-19, no approved treatment is currently known. Here, folic acid (folate), a water-soluble B vitamin, is introduced for the first time for the inhibition of furin activity. As such, folic acid, as a safe drug, may help to prevent or alleviate the respiratory involvement associated with COVID-19.”

Virtual Screening and Repurposing of FDA Approved Drugs Against COVID-19 Main Protease.

“The present study provided a comprehensive targeting of the first resolved COVID+19 structure of Mpro and found a suitable save drugs for repurposing against the viral Mpro. Ribavirin, telbivudine, vitamin B12 and nicotinamide can be combined and used for COVID treatment. This initiative relocates already marketed and approved safe drugs for potential use in COVID-treatment.”                                                                                                                                   

Clinical Trials are Proving that Vitamin D fights COVID-19 in Hospitals.    

Open Access Review Evidence Regarding Vitamin D and Risk of COVID-19 and Its Severity.

“Vitamin D deficiency co-exists in patients with COVID-19. At this time, dark skin color, increased age, the presence of pre-existing illnesses and vitamin D deficiency are features of severe COVID disease. Of these, only vitamin D deficiency is modifiable. Through its interactions with a multitude of cells, vitamin D may have several ways to reduce the risk of acute respiratory tract infections and COVID-19: reducing the survival and replication of viruses, reducing risk of inflammatory cytokine production, increasing angiotensin-converting enzyme 2 concentrations, and maintaining endothelial integrity. Fourteen observational studies offer evidence that serum 25-hydroxyvitamin D concentrations are inversely correlated with the incidence or severity of COVID-19. The evidence to date generally satisfies Hill’s criteria for causality in a biological system, namely, strength of association, consistency, temporality, biological gradient, plausibility (e.g., mechanisms), and coherence, although experimental verification is lacking. Thus, the evidence seems strong enough that people and physicians can use or recommend vitamin D supplements to prevent or treat COVID-19 in light of their safety and wide therapeutic window. In view of public health policy, however, results of large-scale vitamin D randomized controlled trials are required and are currently in progress.”                                                                  

Casting Sunlight on an Epidemic   Is vitamin D a critical host factor to prevent COVID-19?

“Some people will experience minimal effects from COVID-19 because their immune system can efficiently fight off the infection. The “host” factors that promote such a strong immune system were extensively studied before the age of antibiotics, and without an effective vaccine, they should be an important part of today’s response to the epidemic. Host factors that are often considered include vitamins (e.g., A and C), minerals (e.g., zinc and magnesium), and the omega-3 fatty acids. Of these, perhaps the most studied and most important host factor impacting survival from COVID-19 is vitamin D, created in skin from exposure to ultraviolet B radiation in sunlight.”                                                                              https://www.medpagetoday.com/infectiousdisease/covid19/85596

Vitamin D is the Solution to the Covid-19 Second Wave.

“What is causing the Second Wave? Vitamin D blood levels are seasonal; they rise and fall from one season to another. In summer, vitamin D levels are higher because people are out in the sunshine. When sunshine (specifically UV-B) strikes the skin, the body makes vitamin D. But as people spend more time indoors, in autumn and winter, vitamin D blood levels fall. The levels decrease from late September to October to November, and they reach their lowest extent in December through March.”                                                                               

Role of Vitamin D in Preventing of COVID-19 Infection, Progression and Severity.

“The outbreak of COVID-19 has created a global public health crisis. Little is known about the protective factors of this infection. Therefore, preventive health measures that can reduce the risk of infection, progression and severity are desperately needed. This review discussed the possible roles of  vitamin D in reducing the risk of COVID-19 and other acute respiratory tract infections and severity.”                                                                                    

Immune-boosting Role of Vitamins D, C, E, Zinc, Selenium and Omega-3 Fatty Acids: Could they Help Against COVID-19?

“Recent evidence has highlighted that nutritional supplementation could play a supportive role in COVID-19 patients. Administration of higher than recommended daily doses of nutrients such as vitamins D, C, E, Zinc and omega-3 fatty acids might have a beneficial effect, potentially reducing SARS-CoV-2 viral load and length of hospitalization . These nutrients are well-known for their antioxidant properties and immunomodulatory effects. Deficiencies in these nutrients can result in immune dysfunction, and increase susceptibility to pathological infection. In fact, dietary insufficiency of vitamins and minerals has been observed in high-risk groups of COVID-19 patients, such as the elderly, increasing the morbidity and risk of mortality  It is well known that the elderly are more likely to be nutrient deficient and to have compromised immunity via immuno-senescence, significantly increasing their risk of poor outcomes from COVID-19, and making adequate nutrition doubly important. The role of vitamins D, C, E, Zinc, selenium and omega-3 fatty acids in immunity, their status in patient infected by SARS-CoV-2 and their potential therapeutic role are discussed.”                                                                                                      

Nutrition, immunity and COVID-19.

“Vitamins B6 and B12 and folate all support the activity of natural killer cells and CD8+ cytotoxic T lymphocytes, effects which would be important in antiviral defence. Patients with vitamin B12 deficiency had low blood numbers of CD8+ T lymphocytes and low natural killer cell activity.”                                                                                                                                

Nutritional Status of Patients with COVID-19.

“Nutrients play a vital role in the defense against infectious diseases and the regulation of inflammation; however, little is known with regards to COVID-19.

We measured concentrations of vitamins B1, B6, B12, folate, vitamin D (25-hydroxyvitamin D), selenium, and zinc in 50 patients with COVID-19. Vitamin D deficiency was shown in 76% of patients and selenium deficiency in 42%. There was a significant difference compared to a control group of 150 people (vitamin D deficiency 43.3%). Among 12 patients with respiratory distress, 11 (91.7%) had one or more nutrient deficiency.”                                                                                                                                    

Combating COVID-19 and Building Immune Resilience: A Potential Role for Magnesium Nutrition? 

“In December 2019, the viral pandemic of respiratory illness caused by COVID-19 began sweeping its way across the globe. Several aspects of this infectious disease mimic metabolic events shown to occur during latent subclinical magnesium deficiency. Hypomagnesemia is a relatively common clinical occurrence that often goes unrecognized since magnesium levels are rarely monitored in the clinical setting. Magnesium is the second most abundant intracellular cation after potassium. It is involved in >600 enzymatic reactions in the body, including those contributing to the exaggerated immune and inflammatory responses exhibited by COVID-19 patients.”                          

A Cohort Study to Evaluate the Effect of Combination Vitamin D, Magnesium and Vitamin B12 (DMB) on Progression to Severe Outcome in Older COVID-19 Patients.

“Objective: To determine the clinical outcomes of older COVID-19 patients who received DMB compared to those who did not. We hypothesized that fewer patients administered 2DMB would require oxygen therapy and/or intensive care support than those who did not.”

____________________________________________________________________                                                                                                          

There are many more documents, papers and articles on nutrient deficiencies and COVID treatment and I hope this blog helps with your personal research and pathway to recovery.

I you wish to add any other articles to the comments please do, I would love to hear from you.

Kindness always

Tracey x

www.b12deficiency.info

Do you want to help make B12 injections available OTC from Pharmacies in the UK?

 

 

MHRA Double standards on vitamin B12 injections

So far, B12 injections can’t be bought from a pharmacy in the UK by the general public, but can be bought from a hair or beauty salon or any one of the 2500 technicians, clinics or outlets in the UK at a cost of between £25 – £100 each.

Isn’t this odd?- And some would say ridiculous or even immoral.

 

Following on from my previous blog regarding the B12 OTC Petition and the future Westminster Hall debate which my MP Jane Hunt will apply for – some of you kind people have asked your MP to join Jane and also make supporting speeches. Some MP’s have said, “I would need some compelling evidence to agree to do this.” – As if being restricted to just 4 lifesaving, cheap, injections a year isn’t compelling enough?

Well, the following information may help your MP to act – but if it doesn’t, then goodness knows what will and I suggest you get yourself a new one as soon as possible!

Find your MP here: FindYourMP and perhaps send this blog post to them?

Now here’s the funny bit

The MHRA in responding to our petition stated:

“……Vitamin B12 could not legally be classified as a medicine that can be made available for sale without prescription in pharmacies because it is an injection and because the condition it is licensed to treat, pernicious anaemia, needs a clinician  to diagnose it, and monitor its treatment (see point IV above). The same applies to insulin injections and to the diagnosis and monitoring of treatment of diabetes.
Vitamin B12 injection is currently licensed for use in maintenance therapy for pernicious anaemia every 2 – 3 months depending on the type of pernicious anaemia. Even if the product could be reclassified to make it available for sale in pharmacies, it could not be used more frequently than every 2 – 3 months, so reclassification to a Pharmacy medicine would not help those who require more frequent injections.”

and then they also state:

“Our current advice to private clinics administering vitamin B12 injections which are not licensed medicinal products intravenously for non-medicinal purposes is that we do not regard these to be medicines and that they fall outside of the remit of the MHRA. It must be absolutely clear in the advertising of such products that they do not have a medical purpose.”

So the same B12 (hydroxocobalamin in this case), from the very same manufacturers, is at the very same time;

A licensed medicinal product and also a non-medicinal product.

Mad, maddening and hilarious all at the same time isn’t it?

Slaps on the wrist

Some enterprising B12 injection providers have been telling the general public the truth, that B12 injections help boost immunity, that they combat fatigue and they may therefore help against COVID but the MHRA’s ludicrous rules around non-medicinal products which are also POM’s mean these statements do not comply and in fact telling the truth is a BIG FAT NO NO.

The MHRA have spent time during COVID alongside the ASA (Advertising Standards Agency) warning people who sell B12 injections direct to the public through beauty salons and the like – that they absolutely must not tell those they advertise to, what B12 injections will do or what they can help with.

12th June 2020

The MHRA allows clinics and individuals to market B12 injections by using the words ‘wellness’ or ‘boost’ or ‘supplement’ but not ‘deficiency’, they absolutely cannot be marketed with medical claims, and this is the bit that makes NO SENSE whatsoever, because we with B12 deficiency keep being told they are a ‘Prescription Only Medicine’!!!!!!

Please see below;

In May, the MHRA and the ASA published an Enforcement Notice which makes clear to businesses which offer vitamin shots the nature of the rulings and directs them to remove any COVID-19 related claims from their websites and social media pages. 

The following sets out and details these most recent regulatory developments:

  •  Prescription-only medicines (POMs) cannot be advertised to the public. 
  • Injectable vitamin D and injectable vitamin B12, specifically, are prescription-only medicines 
  • Advertisers must not, directly or indirectly, promote POMs to the public. Targeted enforcement, with the aid of monitoring technology, to find problem ads for removal and sanction came into effect on 12 June 2020. It also states this applies to ads for all “vitamin shot” products, not just vitamin D or vitamin B12. 
  • Action against direct and indirect claims that vitamin shots could help treat or prevent COVID-19

B12 Clinics

Like anything in this world there is good and not so good practice. Some clinics and individuals selling B12 injections direct to the public are stringently trained and follow their company’s guidance to the letter, keeping good records.

If they find a potential client is severely B12 deficient but has not been diagnosed and needs to be referred to a GP, they will explain this without skewing chances of diagnosis by not giving a B12 injection. Others won’t, they simply may not know that diagnosing B12 deficiency for the person is key to being able to access B12 from their GP as there is usually a lifelong need and having regular B12 injections from a private clinic would may not be financially sustainable.

A lifeline

These clinics and technicians provide an essential lifeline for so many who are dragging themselves around trying to survive on one injection every three months whilst trying to function, keep their mental health on track, look after a family, hold down a job and who may have had to home school on top of everything else during this years lockdowns.

They also provide a lifeline to the many patients who are B12 deficient but remain untreated due to a within range result on a serum B12 test. Too many GP’s do not understand the limitations of the test and that the clinical picture of B12 deficiency is of utmost importance. Some are unwilling to budge and allow treatment even when faced with a tearful patient on their knees begging for treatment.

Although my remit with my website is to keep people under the care of their GP when possible, I have referred people to the services of B12 clinics and technicians. This has occured when people are desperately ill and haven’t the strength or the inclination to battle with their GP for correct treatment. This has meant that these trusted sources can give the first injection and also teach the patient to self inject prior to purchasing their own supplies from pharmacies in other countries for around 60p per ampoule.

BREXIT

The awful truth is that the opportunity to buy from abroad has narrowed with BREXIT so now the situation is even more URGENT. We need B12 injections to be made available OTC from pharmacies in the UK so that when there is no help from the GP and where costly private injections are not an option, that people can access vital treatment.

Let’s not forget that the BSH sent out harmful Guidance stopping essential B12 injections which they then had to amend. Some GP’s Practices proudly report they are moving more and more patients onto tiny and useless 50mcg cyanocobalamin tablets unless they have a diagnosis of pernicious anaemia. This ludicrously harmful practice needs to be reversed. It needs to be shouted from the roof tops that PA is JUST ONE OF MANY CAUSES of B12 deficiency. It is NOT more serious than any other cause and apart from a deficiency caused by a proven dietary lack, treatment by injection is required for the swiftest recovery.

MHRA Threat to clinics

In communication with the MHRA, they also stated:

“However, we do have concerns about the level of clinical oversight present in IV vitamin therapy and injection services in general and the appropriacy of such services is currently under review.”

This ‘review’, if deciding on stopping treatment of B12 injections by clinics who do comply with the ridiculous rules of the MHRA, would not only negatively impact the companies and individuals who give B12 injections, but also to the people who rely on them to keep functioning both physically and mentally.

Don’t want to self inject?

There will always be people who do not wish to give themselves B12 injections and I for one hope that pharmacies would offer a service to people afraid of self administration.
Since embarking on the petition to make B12 OTC, some have commented that they fear that GP’s might stop giving B12 altogether if successful. I feel this fear is unfounded, doctors in countries who do allow OTC still prescribe and administer B12 injections to patients who need them. It would remain the responsibility of Primary Care to diagnose and treat B12 deficient patients but they would have to choose to.

Why do we need B12 to be made OTC?

Because so many people are restricted to just one lifesaving B12 injection once every three months. Some people say they can cope on this regime but many of us can’t, myself included. Each of us is differently affected and require a different frequency of B12 injections.

Whilst many GP’s will not treat patients according to individual need (or feel their hands are tied), then it is essential to allow patients the ability to look after themselves.

Please, if you feel strongly on this issue, ask your MP to get involved.

When rules are harmful, discriminating and ridiculous they need to be changed. Surely the MHRA can make vital lifesaving B12 injections available over the counter if they want to?

Wishing you the very best for 2021.

I hope that together we can reach this joint goal, along with freedom, togetherness and peace.

Tracey x
www.b12deficiency.info

 

 

 

#ProtectTheNHS #SaveLives and #MakeB12OTC

Making injectable B12 available over the counter from pharmacies will help save lives and will help to save money and time for the NHS.

You may have been denied your B12 injections due to COVID 19.

You may have failed to achieve a diagnosis due to your GP’s lack of knowledge of the condition.

You may be struggling with your symptoms due to under treatment of your deficiency.

You may be buying supplies from another country due to lack of treatment from your GP.

You may however, be in the enviable position of being allowed to collect your prescribed ampoule from a chemist and have been taught by your GP Practice to self inject.

Whichever bracket you fall into, can you help?

Do you want to be able to buy B12 OTC from your pharmacy?

Do you want to be able to treat yourself when you need to, rather than when restrictive guidance allows?

NOW is the time to act, to take your future into your own hands and try with me to make B12 OTC.

Our Struggling NHS

The NHS was in trouble long before COVID 19 arrived, it’s been under funded and under threat for a long time. We can all help to make a difference!

As stated in my previous blog there are estimated to be 5.7 million people with B12 deficiency in the UK, which is greater than the population of Finland!

The cost of mental health

Obviously B12 deficiency affects all body systems but lets just focus on mental health as an example.

Each GP appointment costs on average £30 say NHS England with 40% of appointments now involving mental health.

According to the Children’s Society UK there are said to be 16 million people, that’s 1 in 4 of us who will experience a mental health issue at some point in our lives and “the estimated costs of mental health problems in the UK are over £100 billion each year.”

Given that depression and anxiety are common first presenting symptoms of B12 deficiency then it could be that a considerable proportion of this figure may have this very common, easily and inexpensively treated, but commonly misdiagnosed condition.

The NHS state that an under estimate of 49,988 people were detained under the Mental Health Act in the UK between 2018-2019. The cost of an overnight stay on a psychiatric ward is said to be around £400, that’s almost £20,000,000 per night! but clearly this is not the whole financial picture.

The numbers

If just 1% of the 5.7 million people suffer with poor mental health caused by B12 deficiency and are sectioned and detained for 30 days under the Mental Health Act then the cost to the NHS is at the very least £684 million.

Of those thought to be B12 deficient in the UK, consider that if just 0.001% which is 57 people, each had a 30 day section, this would cost at the very least £684,000.

By comparison, if each of those 57 people were able to have a weekly B12 injection, even at the current cost to the NHS which is £8.80 per box of 5 ampoules, (£1.76 each), then each person’s cost per year would be only £91.52. So the cost for 57 people just £5,216.64.

I personally know 4 people who have had extended stays in mental health units averaging 4 months. Each of these people are B12 deficient, two were sectioned prior to diagnosis and two were sectioned when on restricted 3 monthly B12 injections. Three of them now self treat by buying online at a cost of around 60p per ampoule and are now doing really well. But how long will we be able to buy from online pharmacies with Brexit looming?

The cost of just one of these people hospitalised for 4 months reaches at least £48,000. These figures are of course a gross under estimate of the actual cost of a section under the Mental Health Act. At the very least the cost of the initial assessment and the time of 2 doctors required for detainment would need to be added. And in some cases there might be the cost of an ambulance and its team, the police, a social worker, a Crisis Team, and sometimes even a locksmith.

This of course can never reflect the impact of the emotional cost to the person detained, to their family and friends, their personal financial losses, their inability to work, potential loss of career, continued need for mental health support and the wider cost to society as whole.

Get involved!

Will you help?

This interactive tool from the Go Compare Bill of Health explained by Net Doctor allows you to add up your own cost and contribution to the NHS.

Consider calculating your B12 deficiency related costs and emailing any of the following with your B12 story and why you think injectable B12 should be made available over the counter, as it is in many countries in Europe and around the world:

The MHRA – engagement@mhra.gov.uk 
Your MP – Find your MP’s email address
The health minister – matt.hancock.mp@parliament.uk
The chief medical Advisor – c.whitty@nhs.net

You could also email marie.turner@dhsc.gov.uk. Marie wrote to me from;

The Department of Health and Social Care which in their words “helps people to live more independent, healthier lives for longer. It leads, shapes and funds health and social care in England, making sure people have the support, care and treatment they need, with the compassion, respect and dignity they deserve.”

Marie wrote;

“Ms Witty has corresponded with the Department on this subject over a number of years, and it may help if I summarise the advice we have provided to her over this time…….

Ms Witty believes there are fundamental problems with the diagnosis and treatment of vitamin B12 deficiency and pernicious anaemia. When vitamin B12 deficiency has caused anaemia, its diagnosis is not generally difficult, and the Department is not aware of significant problems of under-recognition.”

Obviously the age old problem of incorrectly assuming anaemia is always present with B12 deficiency rears it’s ugly head in this letter, but it’s the bold text I’d like you to write to Marie about because she needs to know that as we are fully aware, B12 deficiency is absolutely under recognised, under treated and continually misdiagnosed to the detriment of the NHS and society as a whole.

If you need a little help with your email please find sample text here.

Your voice matters!

Best wishes,

Tracey
www.b12deficiency.info

Please consider signing and sharing the B12 OTC Petition.
PLEASE NOTE make sure you don’t pay to sign, the money goes to Change.org and not to the cause you are supporting.

 

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.

NHS Gloucestershire are asking for people to get in touch.
They say:
“Get Involved in Gloucestershire is an online participation space where you can share your views, experiences and ideas about local health and care services. Your input will help inform and influence the decisions local NHS organisations make. Register now and become part of the Get Involved in Gloucestershire community.

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 see the petition page for more information on making B12 injections OTC.

 

Go back to your GP if they used the previous BSH Guidance against you!

Many voices make a difference!

Well done everyone who wrote to the BSH (British Society for Haematology) regarding their previous misinformed COVID 19 Guidance for those with B12 deficiency.

They have thankfully now updated their website with much more sensible advice so if your GP followed their previous statement – Please get them to take a look at this new link in order to get your B12 injections reinstated. They have now helpfully made the clear distinction between non dietary and dietary lack.

Highlights include:

“The need for intramuscular (IM) hydroxocobalamin should be discussed with each patient individually.

…….Alternatives to attending the GP surgery such as local pharmacies or home administration by district nurses should be explored.

……. As an alternative, oral cyanocobalamin can be offered at a dose of 1 mg per day until regular IM hydroxocobalamin can be resumed, i.e. once GP surgeries are able to do so safely, aiming to have a shortest possible break from regular injections.

…..Patients should be advised to monitor their symptoms and should contact their GP if they begin to experience neurological or neuropsychiatric symptoms such as pins and needles, numbness, problem with memory or concentration or irritability.”

Thank you to Rita – BSH Guidelines Programme Manager, for responding so swiftly.

My apologies I put this on social media a few days ago and forgot to blog!

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More news:

The BBC have shown interest in our issue but as things with COVID 19 have escalated since our initial contact and finding an interviewee, we are currently on the back burner. I will keep you posted with any further developments.

Research

Those of us in need of B12 injections know that they are not a placebo despite what some clinicians believe.  In fact B12 is a known toxin scavenger and has long been identified as a poisons antidote.

So while some UK doctors are stopping B12 injections for those who need them to live well and function, medical researchers are looking at ways to combat COVID 19 and believe that B12 and nicotinamide (B3) can help.

University of Oxford’s Carmen Wheatley’s research;

SARS-Cov-2/Covid/19 ADULT RESPIRATORY DISTRESS SYNDROME /ARDS: HIGH DOSE IV METHYLCOBALAMIN IS A SAFE & COST EFFECTIVE RESCUE TREATMENT for ARDS

“A SAFE AND EFFICACIOUS PROPHYLACTIC /TREATMENT FOR COVID19, TO PREVENT AND TREAT ACUTE RESPIRATORY DISTRESS SYNDROME, ALREADY EXISTS: RESPECTIVELY using HIGH DOSE IM AND IV METHYLCOBALAMIN FORM OF VITAMIN B12. The hydroxocobalamin form of B12 has been used in ICUs in France, Italy and China for nearly 70 years, as the anti-CN antidote of choice. It is safe, licensed and available. Methylcobalamin would be preferable, for a number of research based reasons. But both could be life savers in the current health crisis.”

and:

Virtual screening and repurposing of FDA approved drugs against COVID-19 main protease

Key findings

COVID-19 Mpro formed a phylogenetic group with SARS CoV that was distant from MERS CoV. The identity% was 96.061 and 51.61 for COVID-19/SARS and COVID-19/MERS CoV sequence comparisons, respectively. The top 20 drugs in the virtual screening studies comprised a broad-spectrum antiviral (ribavirin), anti-hepatitis B virus (telbivudine), two vitamins (vitamin B12 and nicotinamide) and other miscellaneous systemically acting drugs. Of special interest, ribavirin had been used in treating cases of SARS CoV.

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Best wishes and keep safe,

Tracey
www.b12deficiency.info

You can find all the blogs relating to COVID 19 on this new page