Gradually, everything that was remotely protective for B12 deficient patients appears to be being deleted, eroded and changed to suit those who seem intent on switching us permanently to tablets which won’t help to repair nerves.
B12 supports the immune system, it is vital for life, injections are required to keep those of us who cannot absorb B12 from food well and functioning. The WHO list hydroxocobalamin as an essential medicine. Humans simply cannot live without it and should not be forced to, but that’s what’s happening now.
Those having injections regularly cannot absorb B12 from food, it is not dietary lack that brought them to their knees it was one of the other many causes of B12 deficiency.
Many are terrified to challenge their GP’s, many who have asked to be allowed to self inject have been ignored. Nurses are calling patients for their agreement to permanently switch their future treatment to tablets only. This must be resisted at all costs, see why below. Patients are already traumatised by COVID, separated from their loved ones and then have to deal without vital treatment because of a distinct lack of understanding of this very common and commonly misdiagnosed condition.
Things are changing day by day and there is no one sensible source of information for our GP’s. Some patients have had letters stating the GP’s are following advice from Public Health England, NHS England, CCG’s, etc and some even say ‘advice from Europe’.
The situation is an absolute disaster and needs sorting fast.
Patients need vital injections
Patients can be taught to give injections, we can be trusted, we are adults
Patients can then function, can do their Key work, can look after their families, can maintain mobility, can reduce pain levels and keep mental health problems at bay.
The BMA (British Medical Association) March
In March the BMA produced a traffic light workload prioritisation table for the RCGP.
“………Past experience has shown that patients will die from non-COVID-19 related illnesses in addition to COVID-19 itself as we divert all of our health care resources towards it (1). General Practice has a huge role to play in maintaining the underlying health of our population in an attempt to prevent this. It is vital that we continue to provide care to all patients if we have the capacity, with workloads stratified to ensure that those at greatest need are prioritised.”
It uses the following headings:
GREEN – CONTINUE AMBER – IF POSSIBLE RED – STOP
B12 injections are under Amber as follows;
“Vitamin B12 injections – consider teaching appropriate patients to self-administer and ensure frequency is not more than 12 weekly”
(Not more than 12 weekly eh? That’s not what NICE say – see below!).
B12 injections have since been downgraded by the BMA and the headings have been changed, only a few are now considered “Medium Priority” as of April the 10th 2020.
Amber – Medium Priority
“Vitamin B12 injections for post bariatric surgery patients – consider teaching appropriate patients to self-administer and ensure frequency is not more than 12 weekly. Review whether oral supplementation would be appropriate”.
Red – Lower Priority
“Vitamin B12 injections – consider teaching appropriate patients to self-administer and ensure frequency is not more than 12 weekly. Review whether oral supplementation would be appropriate if asymptomatic with a dietary deficiency ” BMJ 2019 https://www.bmj.com/content/365/bmj.l1865
The question is, why during this crisis, isn’t our immunity boosting, life saving vitamin injection for people who can’t absorb B12 from food in the Green band? It simply doesn’t make any sense.
This is what NICE CKS states, that if B12 deficiency is;
• 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 between meals, or have a twice-yearly hydroxocobalamin 1 mg injection.
British Society for Haematology (BSH) is moving goal posts;
BSH advice during the COVID19 pandemic now decide that those of us who rely on B12 injections can now access our non existent liver stores, here’s an excerpt below;
Liver stores last for a year and hence levels of B12 will not be affected if one to two 3 monthly injection is omitted in patients on maintenance parenteral B12 supplements. BSH supports omitting B12 injections even in this group during COVID19 outbreak at least until the surge has passed.
For patients who report symptoms in the weeks preceding B12 injection, oral B12 50-150 micrograms per day can be offered as an alternative because there will still be sufficient absorption. If still very symptomatic then B12 injection can be given with clear understanding that the interaction with healthcare increases transmission risk of COVID19. We suggest taking the opportunity to measure B12.
FAO/WHO 2001. Human Vitamin and Mineral Requirements. Chapter 5.
“…..Interruption of this so-called enterohepatic circulation of vitamin B12 causes the body to go into a significant negative balance for the vitamin. Although the body typically has sufficient vitamin B12 stores to last 3-5 years, once PA has been established the lack of absorption of new vitamin B12 is compounded by the loss of the vitamin because of negative balance. When the stores have been depleted, the final stages of deficiency are often quite rapid, resulting in death in a period of months if left untreated.”
Oral B12 research
Patients during the crisis are now regularly told that they can in fact absorb B12 from cyanocobalamin tablets and yet:
A review from Cochrane; (Wang et al., 2018) details this: ……
No study reported on clinical signs and symptoms of vitamin B12 deficiency (e.g. fatigue, depression, neurological complications), health-related quality of life, or acceptability of the treatment scheme.”
Authors’ conclusions: “Low quality evidence shows oral and IM vitamin B12 having similar effects in terms of normalising serum vitamin B12 levels, but oral treatment costs less. We found very low-quality evidence that oral vitamin B12 appears as safe as IM vitamin B12. Further trials should conduct better randomisation and blinding procedures, recruit more participants, and provide adequate reporting. Future trials should also measure important outcomes such as the clinical signs and symptoms of vitamin B12 deficiency, health related-quality of life, socioeconomic effects, and report adverse events adequately, preferably in a primary care setting.”
The Difficulties With Vitamin B12
A 22-year-old woman presented with progressive sensory ataxia and optic neuropathy. Previous investigation by her general practitioner had found a low serum vitamin B12, which had been corrected with oral supplementation. Neurological investigations showed raised plasma homocysteine and methylmalonic acid towards the upper limit of normal with a low serum vitamin B12 MRI showed an extensive cord lesion in keeping with subacute combined degeneration of the spinal cord. We treated her with high dose parenteral vitamin B12 and she has made a partial recovery. We discuss the management of patients who present with neurological manifestations of vitamin B12 deficiency; highlighting the fact that parenteral replacement is needed in such cases, even if the serum vitamin B12 level appears to be normal. We also discuss ancillary investigations that should be performed in patients with suspected vitamin B12 deficiency.
Caution note from the B12 institute about oral supplements .
Everyone making the rules is watching the smoke but not one is seeing the fire…..
People in crisis sometimes make bad decisions and stopping B12 injections is one of them, it’s short sighted and harmful and there will be a price to pay if things don’t change soon.
Best wishes and keep safe
(Thank you Dr Katie Brooks for finding WHO ref)