Some might say this title is dramatic, but those who are currently denied access to B12 injections, who are panicked to within an inch of their lives with coronavirus and who now have no essential vitamin B12 treatment, would probably feel it’s a completely reasonable statement.
Being expected to cope for months on end without your safe, cheap, effective and life saving injections would be like making someone climb up Mount Everest without any shoes or coat whilst carrying a donkey on their back.
I know of no other vital, life saving medicine that has been stopped during this crisis and I can’t imagine that any other group of people in the UK are being denied such an easy, quick treatment at this time.
A bleak 6 months ahead
This letter below, sent to a whole county might make the untrained eye think that it’s perfectly reasonable to stop B12 injections and give B12 tablets for six months….
Letters, emails, phone calls and texts like these are being received all over the UK, I have seen them from Lancashire, Herefordshire, Gloucestershire, Hertfordshire, Cheshire, Leicestershire, Northumberland, Tyne & Wear, Flintshire, Cardiff, Essex, Wolverhampton, Cornwall, North Yorks, west Lothian, Midlothian, Aberdeenshire.
Here’s the text from the first paragraph;
We are writing to you on behalf of your GP in regards to your B12 injections. As from Monday, the 30th of March we will no longer be giving B12 injections to patients therefore all our future appointments have been cancelled. This is as a result of coronavirus and our aim is to protect you as well as our staff. We will restart the injections once the current measures are suspended.
Do you see the sneaky stuff in there?
What is ridiculous to B12 deficient patients is this totally incorrect and bizarre idea that we can access stores of B12. We can’t and that’s why we’re B12 deficient and why we need regular replacement, this simple fact needs to be understood.
The last bullet point is the real kicker. The uneducated clinicians will say, “you don’t have Intrinsic factor antibodies (IFA) so you don’t have pernicious anaemia (PA) and so you will stay on tablets because we decided you can now miraculously absorb B12 from food!” This ludicrous concept crops up frequently (I have blogged about it before here.) It needs repeating so often – PA is just one of many causes and they are all serious and need correct treatment.
It seems they’re going to try and say you don’t need injections by testing your serum levels after they’ve given B12 oral tablets that simply can’t replace the benefit of B12 injections. They’ll do this by saying “your serum B12 levels are high now so you must be well” whilst ignoring the fact that you’re a depressed, exhausted, broken heap on the floor.
Most of us are in a state of panic at the moment, but imagine having anxiety levels through the roof and then being told you can’t have your life-saving medication for six months because someone ignorant of your condition has decided that YOU don’t matter. Not for six months anyway.
Some people were already on their knees when their injection was cancelled because the last one they had was in December, how exactly are they supposed to function? Some of these people are key workers expected to ‘soldier on’ until they collapse, some are parents thrust into 24/7 child care whilst trying to hold onto a job or their businesses by a thread.
Bay Medical Group (For Happier Healthier people!) have added this clumsy and unhelpful Q&A to their website entitled B12 Switch to oral medication.
Tidal wave of future problems
It’s impossible to expect there to be no mental or physical health casualties among those with B12 deficiency if the only provision for them is a tablet that won’t work to heal nerves or reduce symptoms but will raise serum levels.
Many of us feel like we’re currently living inside the most bizarre film set of all time, but it is also feels a bit like a ridiculous black comedy for some with B12 deficiency.
Many of our GP’s are unaware of the mental health aspect of B12 deficiency despite depression being one of the most common symptoms.
Without B12 injections we can’t function, we can’t remember, can’t walk, can’t feel happy, can’t think, can’t hear, can’t speak properly, can’t live fully.
How are the people with returning psychosis supposed to cope? How are their loved ones expected to manage this severe symptom which is an every day reality in untreated B12 deficiency in either their child, sibling, mother or father?
We’re all told to look after our mental health during this period but these incomprehensible restrictions are making things so much worse than they need to be.
Even people without previous mental health problems are having them surface during this period of isolation. The mental health charity Sane are warning that the Coronavirus could lead to a mental health epidemic.
Cutting essential, cheap, effective treatment for thousands of people through a lack of understanding of a common condition is beyond foolish. In fact it’s a time bomb and there will be guaranteed casualties amongst B12 deficient patients who only take oral tablets during this period.
The WHO
The World Health Organisation states the following in their document Mental health and psychosocial considerations during the COVID-19 outbreak
The following directives are appropriate for those with B12 deficiency; –
Messages for team leaders or managers in health facilities:-
16. Manage urgent mental health and neurological complaints (e.g. delirium, psychosis, severe anxiety or depression) within emergency or general healthcare facilities. Appropriate trained and qualified staff may need to be deployed to these locations when time permits, and the capacity of general healthcare staff capacity to provide mental health and psychosocial support should be increased (see the mhGAP Humanitarian Intervention Guide).
17. Ensure availability of essential, generic psychotropic medications at all levels of health care. People living with long-term mental health conditions or epileptic seizures will need uninterrupted access to their medication, and sudden discontinuation should be avoided.
Messages for older adults, people with underlying health conditions and their carers
22. Older adults, especially in isolation and those with cognitive decline/dementia, may become more anxious, angry, stressed, agitated and withdrawn during the outbreak or while in quarantine. Provide practical and emotional support through informal networks (families) and health professionals.
24. If you have an underlying health condition, make sure to have access to any medications that you are currently using. Activate your social contacts to provide you with assistance, if needed.
People who can only keep their psychosis and depression caused by B12 deficiency at bay with B12 injections should surely be considered here?
B12 (hydroxocobalamin is listed as an essential medicine by WHO (see page 19 here) but it seems this is not understood by many GP’s.
Injection discrimination
There are often comparisons made between insulin and B12 injections and whilst everybody understands that insulin is essential and required by each patient in different amounts some health professionals mistakenly think that B12 is a placebo, a frivolous want for lazy people with hypochondria and Munchausen’s Syndrome. They also think that we all need the same measly amount regardless of our symptoms and level of damage. B12 is as important to patients as insulin is to diabetics.
Our friends and family outside of the B12 world see our predicament as bizarre, they ask us the following questions about B12 injections: –
Are they life-saving YES
Is it expensive NO
Can you overdose NO
We can ask the same of questions about insulin: –
Is it life-saving YES
Is it expensive YES
Can you overdose YES
Can you imagine the outrage if insulin were stopped for six months?
Methotrexate, heparin and insulin are all automatically given to patients to self inject at home, but all these are medications which need strict control, in contrast B12 injections (hydroxocobalamin) cannot be overdosed.
Immediate Solutions
B12 is essential, if you are prescribed B12 injections then it means you cannot absorb B12 from food so oral tablets won’t work.
The British Journal of Haematology state:
“The use of high dose oral cyanocobalamin is licenced for use in several countries….however the efficacy and cost-effectiveness…is yet to be established.”
And I am stating:
Vital treatment should not be restricted or stopped.
We are not in a war.
There is no shortage of B12.
We of course appreciate that GP Practices are under huge pressure at the moment and that many are experiencing staff shortages but there is always a way around these problems.
Practices need to reinstate B12 injections for anyone who is well and can get to the surgery or prescribe B12 ampoules and sub cutaneous needles for people to collect from a pharmacy so that they, or someone close to them can give them their vital injection. (Sub cutaneous injections would be most sensible for patients to use and are the route most who self inject choose, myself included.)
We need our doctors to get behind this movement so that they and the Practice nurses can be freed up from giving injections to those who can inject themselves.
For the sake of the GP’s and nurses who are too busy to teach you to self inject, here are some helpful NHS guides below;
Self injection with sub cut;
Link for how to break an ampoule and load syringe;
We need to be concerned about those people who are unable to function due to lack of B12 but who daren’t insist on treatment, those who quietly accept that their essential injection has been stopped. Our GP’s must be vigilant here and check on those at risk because they don’t want to, or feel they shouldn’t make a fuss.
Petition – Doctors, help us to get off your backs!
I’ve had numerous emails and comments detailing particular struggles with the denied access to B12 from all ages and the one solution which could make this situation better now and in the future is to make injectable B12 available over the counter from pharmacies. This would remove an enormous financial and time burden from the NHS, and GP Practices and would allow the panic to, at least partially, subside in hundreds of thousands of people in the UK.
If your doctor is on our side (I know that some are) please ask them to support this petition and share it with their colleagues.
Please consider joining the 89,000 + kind people who have already signed and shared our Petition.
(Please note: Every time you sign a change.org petition you will be asked to ‘Chip in’ money, but be warned, this money goes directly to the very wealthy change.org company and not a penny goes to the cause you might support.)
If we can get The MHRA and other NHS agencies to help us at a time where barriers are being removed then the tidal wave which is already gathering speed could be slowed.
Removing barriers
On Twitter, there’s evidence that some doctors are celebrating the fact that during this crisis, barriers that made their patient’s and their lives difficult have been removed in minutes, funding hasn’t been blocked and they can do parts of their job more easily…..
Martin Marshall (@MartinRCGP) Tweeted:
“2 emails from friends overnight saying the same thing, one a GP and local NHS leader and the other a clinical academic. They say they’ve achieve more progress in their work in the last 6 days than in the previous 6 months. People are making things happen and barriers are removed.”
Well isn’t now the time for B12 patients to get a piece of the action and have their huge barrier to good health removed?
We are living in unprecedented times but whilst all of us are in this mess together and whilst our backs are against the wall we need to see the great opportunity for change before us. Perhaps now there’s a real chance that we can get our B12 injections made available over the counter and bring us into line with other countries around the world so that we in the UK aren’t left behind.
Good Practice
It’s important for me to acknowledge that there are brilliant Practices in the UK that know their patients need their B12 injections and are either still administering them or are prescribing ampoules and equipment to make it possible for patients to self treat. (My Practice is one of these and I am so grateful, thank you Doctor B!) Anyone under the care of these good Practices will be eternally grateful for their understanding and care at this time. Many would give up their first born to be treated by you!
Take care and stay safe,
Tracey x
www.b12deficiency.info
Told by Practice Nurse today GPs not licensed to prescribe B12 injections for patients to collect from pharmacy so even though I have a grand daughter who is a qualified nurse I cannot have the syringe and B12 for her to give me. Nurse told me to ring back in 2 months and that B12-is stored in the body for 7 months. I have Crohns, I have had all of my Colon removed and I have a Stoma. B12 keeps me alive. My last injection was on December 4th. I am one nearly 5 weeks overdue.
My GP prescribe my B12 for me to pick up.
New advice form the BMA to GPs on how to cope with Covid-19 says this
Vitamin B12 injections – consider teaching
appropriate patients to self-administer and
ensure frequency is not more than 12 weekly
Hello Carol My surgery has stated no more B12 injections (Government policy??) for A YEAR! I cannot go without it. I am so stressed out. Mine is due in a month. Have been offered tablets by pharmacist, but lack of the intrinsic factor just makes oral B12 thrown out. Also suggested a spray that by passes the stomach. have Ulcerative Colitis too and suffer anxiety and depression. It seems to me that we are the forgotten ones. Good luck to you Carol.
Regarding the intrinsic factor antibody (IFAB) test, a negative result doesn’t even rule out pernicious anaemia (PA) – only around half of people with PA have a positive result for this test. The British Committee for Standards in Haematology guideline states that a negative IFAB result does not rule out PA. And yet many GPs are still using a negative IFAB result as an excuse to deny proper treatment!
I self inject with an Autoject 2 and a 1ml 29gx13mm insulin syringe. Thankfully in Australia we can still get the ampoules over the counter. This is an easy method and there is no need to go to the GP. Hope this helps, assuming you can get the ampoules.
If B12 could be proven to be stored in your body for 7 months, my guess would be that NHS would have set their B12 injection frequency at 71/2 months ! Instead of 1 month, later changed without cause to 2 months, later changed again without cause to 3 months, then (oops, gone too far) step back to every 2/3 months.
A healthy person might have a few years of emergency B12 storage in their liver, but it will have been depleted by the time you are tested and found to be deficient.
Some people are still been given their B12 injections, some are being taught how to do it themselves/ partners are taught by the nurse, then supplied with B12 and sharps, some have been given pills, some have been refused anything and sent away in tears….
because this is such a lottery, many, many people have ordered their own supply from abroad and are teaching themselves how to self-inject .
Advice to GPs from the BMA – https://www.rcgp.org.uk/-/media/Files/Policy/A-Z-policy/2020/covid19/RCGP%20guidance/202003233RCGPGuidanceprioritisationroutineworkduringCovidFINAL
Includes –
Vitamin B12 injections – consider teaching
appropriate patients to self-administer and
ensure frequency is not more than 12 weekly
I hope they actually mean “at intervals of no more than 12 weeks”. 12-weekly is a bare minimum – per the BNF, people with neurological symptoms should be getting injections every other day until there’s no further improvement, and then every 8 weeks. Of course, many people struggle even then.
I wrote a complaint letter to my gp saying I need this injection and could they please show me how to self administer. This evening I had a response saying that they have reviewed my medical records and they do not believe I need the injections anymore and therefore they will stop them and test my blood in 6months and yearly thereafter. I am beside myself. I complain and now they are refusing me them permanently.
I need some help.
Dear Angela, this should not be happening! I have emailed you.
Best wishes Tracey
In going through this too. It’s driving me crazy
Are we going to get our injection b12 mines due next month thank you
I finally got my B12 on the 8th of June. The only reason I got is was because my GP practice asked me to come in for a blood test for an unrelated issue. I told them, B12 first, then you can do my blood test.
Before that, I’d had to keep using B12 transdermal patches I bought on Ebay, not knowing whether they would work of not, but figuring it was better than nothing.
I had even told my surgery in the covid interim, that I would be willing to leave my shielding and home to get in my car, get out of it in the GP car park, and have the nursing staff open an upstairs window and fire a B12 injection at me via an animal tranquiliser gun.
Because of the delay due to covid, I have pins and needles in both my hands and my feet, which will be for the rest of my life.
Appalled by your lack of treatment and so pleased you stood your ground!
Best wishes Tracey
Same here! Pins and needles! I have a b12 injection every month but now it’s been four months! I couldn’t stick feeling like c…. any more so I rang the surgery and spoke to the nurse who was horrified that I hadn’t had my b12! I had an appointment for 4.20 that afternoon!! Feeling a lot better and thinking of using the patches as well now!
Hi All forgive bad grammer .the only thing I can think is they are trying to kill us off , soon after my 60th birthday my folic acid tabs were stoped , now they have stoped my B12 shots permantly while I was paying for my meds all was well .
We could be forgiven for thinking this Kevin! Have you seen this? : https://www.b12info.com/blog/covid-19/ There is a link to updated BSH Guidance which will hopefully help your GP to understand. Best wishes Tracey
I think for myself and my GP this has gone to far, for those GPs who think they are Gods are blinded by there own arrogance (what could I possibly know ) I did write to him to add to his arrogance I can now add ignorant, Me I sent off to germany and got 2 years supply to self inject, I was one of the lucky ones I was getting monthly jabs so after 5 weeks I was like a dead kipper , so I needed to do something as I still work full time ,love what you are doing
Kevin, thank you for your kinds words, hopefully some of what you wrote may sink in and be remembered but too many, like you, have no alternative but to look after themselves.
Very best wishes
Tracey
Today is the 4th of august 2020 I have just injected myself for the 4the time in my thigh did it sting just a little . I do this each month . I believe each time you wait and become symptomatic. A little damage is done . From a single injection within 72 hours over 70 % is lost in your urine. My gp said I don’t need my injections because my levels are high . Not differentiating between active and inactive . For all the people who come to this site I’m truly sorry for all of you . For me b12 is the magic potion . That improved my health beyond belief .
If I could add to my post please . Just read the miss information study . To be honest GPs don’t diagnose anything they are so frightened to miss diagnosis. They just give you meds and hope they don’t see you again . After I was put on folate and B12 injections . I did more and more research . Most concluded that in a 72 hour period most of the injections was lost in you urine. One paper I read the Dr recommended treating symptoms and continue until those symptoms subside regardless of blood readings. I reckon some of you guys will have seen it. Great job Tracy love what you are doing
Hi, I have B12 injection monthly, I am the 3rd Generation to have this, after 6 years of injections however my practice nurse has told me I don’t have PA, you only get it if you have Crohn’s disease or the bottom part of the bowel removed! I just have a B12 deficiency and not to come back for 6 months! Have been 5 weeks without injection. Am falling asleep, had nasty fall. No doctors at our surgery since C19. These nurses are running the practice.
Beatrice this is ridiculous, PA is just one cause, there are so many and most GP’s and nurses are totally unaware of the fact that people who don’t have PA but are deficient due to another cause must have B12 injections too. Have you tried speaking to the Practice Manager? Perhaps send them this page? https://www.b12info.com/blog/what-are-the-causes/
If you would like my help, please see this page for more information https://www.b12info.com/blog/contact-me
Best wishes
Tracey
Hello Beatrice im so sorry to read this , i am in the Same boat . as well as falling to sleep i have breathing problems joint pain degenerative disc disease without B12 I am crippled with pain , after 10 years of free flu jabs ,now i find I’m not entiteld,. No Drs at the surgery .20% of the NHS has been working ,and the rest gone in hiding for there life, neglecting all . Tracy is doing a great job, all what iv said will come out in the end ,and instead of clapping for out heroes they shun them,
the doctors dont give a toss about there patients my partner needs them every 3 months not had any since march and she feels like crap but do doctors care NO they dont
Hi Tracey,
I had B12 injections back in 2013 for a couple of weeks and was blood tested once again and told I was ok so I did not need anymore.
For the past few years I have suffered all kinds of symptoms, especially severe muscle cramps, lethargy, brain fog, memory going, etc, and have had lots of tests regarding different symptoms but none of the tests lead to anything.
After years of suffering and at my wits end I demanded an MRI scan as my symptoms as a whole were similar to having MS.
The results came back and my Doctor said he wasn’t a neurologist but I had moderate small vessel disease, chronic Ischemia changes, deep white matter level 2 and Fazekas 2, sorry about the spelling, and if I wanted to know anymore to speak to the Neurologist when get my appointment which was made back in October.
Around the same time my asthma nurse took blood sample as the asthma medication was not working, and never has over the past few years and it was found I had no B12 in my body and that I needed injections.
I was called in by my Doctor who told me due to Covid they were not doing B12 injections, so I was to find a good vitamin supplier and get some high dosage vitamin B12 tablets and take them, that was over 3 months ago and I am still taking them.
Lately I have started suffering muggy headaches towards the evening, I take my tablets every night before going to sleep, 1 x 1000mc per day.
A few weeks ago I contacted the NHS appointment line to see where my appointment was as I was really worried due to reading that small vessel disease is progressive and gets worse without treatment and I had been prescribed no medication for it. She told me my Doctor had requested a routine appointment and the chances are I would be lucky if the neurologist looked at my MRI scan within 18 weeks, and that the only person who could request a priority appointment was my Doctor.
On top of this in November I was sent for another MRI scan due to blacking out in the bathroom, I came through lying in the shower, it turns out I have a tear inside my knee now, but I can’t have an operation until they have the neurologist report to know it’s safe to operate, my knee keeps giving way and I can’t walk very far.
I have previously tried to get my Doctor to make my neurologist appointment a priority, as i am really worried that the longer things are delayed my brain cells are dying and especially with not getting the B12 injections, but he said he makes Cancer patients his priority not me, and that small vessel disease is related to old age, I am 61 not 71.
I have a theory, that due to the lack of B12 over a number of years that possibly this has caused all my problems including the results of my MRI scan on brain, and I would be interested in knowing more about recent studies on this matter.
I have autoimmune pernicious anaemia (positive intrinsic factor antibodies and positive parietal cell antibodies) and had severe B12 deficiency. I had 4 B12 injections and had enough of that! Terrible side effects. I switched to sublingual B12. That was 12 years ago now. I love my Bioceuticals B12 sublingual spray! I need 2000 mcg daily (4 quick sprays under the tongue) to keep B12 deficiency symptoms away. 🙂