I do acknowledge that there are some of us with doctors who know exactly how to treat B12 deficiency, but evidence shows that we are not all that lucky.
Most of us with this condition suffer neurological symptoms. Our problem is that many doctors don’t recognise our symptoms as such and consequently they continue to worsen. The NICE and BNF Guidelines state that if neurological symptoms are present that B12 injections should be given every other day until the symptoms stop improving.
It’s also important to note that many of us are ‘within range’ on a serum B12 test result, but still heavily symptomatic.
When I was diagnosed with Vitamin B12 deficiency my doctor wasn’t really interested in my symptoms, they weren’t discussed and I don’t think they were even noted. I was given my loading dose injections every other day for two weeks and then I was supposed to manage on one injection every three months.
I couldn’t.
I have neurological symptoms. My myelin sheath, the protection for my nerves, has been nibbled away.
My memory was terrible, my bladder let me down, my tongue was sore and swollen, my vision was blurred, my bowel couldn’t muster up the strength to work, my neck, back, and toes burned with pain, and I felt anxious, I could go on and on. I thought I might be one of those people who end up in the news, with ‘early onset’ Alzheimer’s.
I have an injection every week now, but I have fought tooth and nail for this. I have never been treated as per the guidelines regarding neurological symptoms and I am not alone. I have cried with frustration during my GP appointments. I have asked my doctor why she thinks her memory is more important to her than mine is to me. I have been enraged by letters sent to me from experts I have never met, telling me I need antidepressants and psychotherapy instead of this 55 pence injection. Where is the sense in this? I know that antidepressants are not going to heal my damaged nerves – it is the little red B12 vial, cheaper than a chocolate bar, which does this job, perfectly.
B12 deficient patients are routinely under treated, neglected and ignored. It’s clear that we must all suffer some degree of nerve damage, with different sets of neurological problems and yet for some bizarre reason we are largely, all treated the same – poorly, and sparsely. We are all unique, we all have different B12 requirements. Many of us suffer returning symptoms within days of our injections, some of us can go longer, some of us can’t. I know members of the support group I belong to who are ecstatic when their doctors agree to give them their much needed injections every 10 weeks rather than every 12 but we all know that this frequency is enough to keep to us alive but not to repair the damage to our nerves. We need our doctors to give us a chance for optimum healing by listening to us, by taking our health seriously, by not filling us with chemicals we don’t need, but by giving us an essential vitamin.
A newly diagnosed patient should be given B12 loading doses over two weeks and following these, the patient, who suffers neurological symptoms, may be euphoric at being able to get out of bed for the first time in months or even years. This same patient who may feel a zest for life in place of deep depression, could then be told that they now only require one of these life saving, vital, water soluble injections, every three months. This incorrect statement is rolled out to countless devastated and desperate patients with the added untruth, that too much B12 can be harmful. There is barely any recognition of our symptoms, except for, it seems the depression we sink into when our lifeline is cut. Our request for more frequent injections falls on deaf ears but we are freely offered antidepressants as an antidote for our despair.
The depression induced by lack of B12 has one cure alone, tragically this cure for most, is rationed to one tiny ampoule only four times a year. This is madness.
B12 deficient patients should also have had their folate and ferritin levels checked. If these levels are too low our B12 can have a pointless journey through our systems and leave us without improvement.
Some doctors feel that our neurological symptoms are not B12 deficiency at all and so will continue to test, scan, prod and poke saying it is important they don’t miss anything ‘more serious’. We don’t mind this process as long as you continue with our essential injections, they can do only good. Vitamin B12 stops us deteriorating, stop our brains from shrinking, it don’t interfere with any other drugs and there is no known toxicity.
We need the treatment that the NICE Guidelines and BNF guidelines 9.1.2. allows us, injections every other day until our symptoms stop improving. There is no restriction on this – and there shouldn’t be. Nerve damage takes a long time to heal, ask a neurologist – but not these two Doctors, see letters.
Many of us with this condition have soaked ourselves in research in order to be armed with information to keep ourselves alive and well. Numerous occasions arise when this information we collect needs to be regurgitated for our doctors. We remind them of the guidelines repeatedly due to the simple fact that our neurological symptoms are continually misunderstood or ignored.
We don’t understand the confusion our health professionals suffer with the treatment of B12 deficiency because it is SO SIMPLE. Those of us with this condition are fully aware that it affects all body systems, that B12 deficiency affects our brains. It attacks both our central nervous and peripheral nervous systems and that these nerves run throughout our bodies from head to toe the damage wreaking havoc with our daily lives.
Yes it is this serious, but tragically our doctors feel we are making a fuss if we want –
to stay awake for more than three hours a day,
to move without pain,
to walk without wobbling,
to conceive without IVF,
to have a tongue that fits,
to empty our bowels from time to time,
to speak without forgetting,
to hear without constant ringing,
to see without blurring,
to feel calm and relaxed,
to hold down a job,
to have a day without tears,
to remember our loved ones names,
to feel like death isn’t a better option. . . . . . . . . . .
Is this really asking too much?
The guidelines regarding neurological symptoms are plain to see, so all we ask is that these are followed.
Our doctors take the Hippocratic Oath, it states “And I will use treatments for the benefit of the ill in accordance with my ability and my judgment, but from what is to their harm and injustice I will keep them.”
What happens every day in reality, is criminal.
Best wishes, Tracey
www.www.b12deficiency.info
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Thank you Tracey – beautifully and oh so truthfully written !! The ” what we want ” list made me cry – so simple in essence but oh so far away and out of reach . I live for the day to be able to do all of these things , consistently and without fail , and feel normal and alive . In the meantime the struggle goes on, for everyone suffering B12d , to educate the doctors about the condition & society about what actually goes on and the lack of correct and vital treatment for people like us . Well said Tracey and I echo your sentiments precisely .
Thank you Nicola
How very true Tracey and well written. I will be taking a copy along to the meeting I have with the practice manager, senior partner and GP on Tuesday afternoon. I will read it out loud to them as my opener. Many thanks for taking the time to write it x x x
Thank you Jo, I wish you the very best of luck at your meeting. Lets hope someone cares enough to help!
Good idea Jo , I have an appointment on Wednesday and think I might just do the same thing – if that’s OK with you Tracey ?? I live in hope that one day someone will listen and care enough to go out of their way to find the right answers .
Absolutely fine Jo, wishing you the very best of luck!
I am just so at the end of my tether, having been untreated for 3 years although B12 was 103 then and 65 now, and now they have stopped my injections saying I must be full, even though symptoms have not gone away, and it has been 4 weeks since my last injection and I feel like giving up, I just cannot cope with the pain and the neuro symptoms any more – the doctor tells me it cannot be B12 as I have had 3 months of loading doses and must be full by now ( but did not examine me – just told me over the phone)
my family are fed up with me being in bed all day, my husband has stopped talking to me, I am alone and without treatment.
I try to stay positive – try to give others advice on the things I have learnt, but in encouraging them to ask more of their doctors I feel a fraud, as I have had no luck with mine.
Dear Mrs Somerset, I am completely appalled (as I am sure you are) by your doctor’s ignorance of B12 deficiency and their neglectful treatment. The impact of this condition on patients and families is profound. Please can I suggest you join this excellent support group https://www.facebook.com/groups/5315527846/ It saved my life.
Hi lm not sure if lm b12 or iron deficient, my doctor gave me a blood test and said my b12 is ok but l need to take iron supplements. these are my symptoms fatigue, weakness, ringing in ears, diarrhea, restlessness, anxiety, cold feet, burning in toes, insomnia, tremor in leg, incontinence, hard to walk sometimes, abdominal pain, aching muscles, back pain. l do have crohns and parkinsons and on medication, lm so sick of feeling this way and scared l will never be my old self. regards Gaye
Dear Gaye
If you haven’t seen a copy of your blood results then please get a copy asap. You are legally entitled to these. Your symptoms and history certainly mean that B12 deficiency, thyroid and coeliac should also be fully explored.
Please see this page, point 4 is key for when you have your copy of your results. http://www.www.b12deficiency.info/what-to-do-next/ Please email me at [email protected] if you need any help.
Best wishes
Tracey
My b12 has been tested three times, lowest being 220 ug,highest 287 had not realised I was supplementing in a protein shake, I have ringing in the ears, legs ache a lot, intense aching at night, had low normal folate 4.1 ferrin 22, MCV 91.1 mch 31. Top range 32, mchc 330. Dr says tinnitus not a symptom, also had pains in hands which dr suggests carpal tunnel.
Dear Diane
Please see point 4 of this page, hopefully it will help your GP to understand a little more about B12 deficiency ;http://www.www.b12deficiency.info/what-to-do-next/ Tinnitus is a neurological symptom of B12 deficiency. Best wishes Tracey
So glad I have found this site…your “what we want list” list also made me cry. My dear mum was diagnosed with PA 20 years ago. After all my research, I realise now she was never treated properly for the B12 deficiency and sadly there was not much information available then. She developed memory problems that just got worse and was told she had Alzheimers but I always believed it was connected to the B12 deficiency. I am now convinced it was. Just sad that I could not have done more for her, I just accepted the doctor knew best but I’m not sure that was the case. The more I read the more it upsets me that so many people are not getting the treatment they need.
Thank you for taking the time to comment Gill. I think your experience is that of so many, me included. Best wishes Tracey
I am fighting tooth and nail for my OH to receive injections. After 11 years of presenting with all the symptoms including low blood platelets and now worsening of neurological symptoms but still the **** medics are dragging their heels. OH (elderly) is just within range but low 178, he is elderly and after my researching this I was horrified to see just how dangerous low levels of this vitamin can be. I too am deficient but just below range so they are giving me jabs but I know they won’t be enough
I am sick of fighting but I am not giving up, but I, like my OH have other chronic health problems and disabled. I am sure the medics will kill him off with not bothering to treat…it’s going that way and even my trying to get them privately is thwarted with problems, no one in my area seems to be doing it.
Glad I found your site, I want to fight too but from where I’m sitting it’s looking impossible and being elderly and unwell most of the time, it’s like I have the weight of the world on me. Too late for help for us now I suspect but hopefully you will win through so people don’t have to face this horrendous problem. Thanks for listening to me.
I have done the whole system of trying the NHS because I believed that perhaps one doctors would get it. My deficiency is caused because I had Crohn’s in the 1970’s. I had the part of my bowel removed that absorbs B12. I was told I would need monthly injections for life. These were subsequently stopped. My GP at the time did not want to stop them but he was told he had to because they would not be required.
My B12 levels have been just above deficient ever since and this was ignored in favour of underactive thyroid that was actually also within range but and easier fix. I was told I was having early onset menopause at 39, my periods had stopped but i had no other symptoms or tests. MY B12 level was low. I am currently treated as an asthmatic because I can no longer walk far without getting breathless. I was treated for overactive thyroid with radio active iodine to kill my thyroid when my B12 was still low. Ever since I have been exhausted most days. If I have a good day and manage to do anything I have to sleep for days and take pain killers everyday.
I no longer go out on my own. I spend my days fighting and researching looking for help but none is there. Now diagnosed with Peripheral Neuropathy caused by Vitamin B12 deficience and it is not even on my doctors summary.
I have had numerous referrals to specialists, different scans tests and after 5 years of this wanting to works with the NHS I have no where left to go.
What really frightens me about this is the growing numbers of people I know who have illnesses that more than likely have a source of B12 deficiency yet it is still ignored.
We nearly got there with Long Covid reswhere one researcher effectively said wouldn’t it be amazing if we discovered causes for other serious illness while looking at long covid,
The answer is there,
There are over forty thousand people on the Vitamin B12 website looking for answers and advise but it is till easier for doctors to go for the easy to see.
This has in part been my experience but I could and am writing a book on what this is like to cover everything. My question is if someone like me who was told I would need this for life and has a clear reason for my in ability to absorb B12 properly what chance for those with Pernicious Anaemia or other causes.
I recognise all those symptoms and at 62 knowing what I do and how my health has been ignored for the sake of a cheap cure in preference for anything else that has cost the NHS much much more I should be looking forward to retirement but in truth I am not even sure I will make it over the next 4 years right now and no this is not depression it is a serious review of where I am now.
We need action now but the sad thing is too many of us are not well enough to fight, I now I feel too weak now and am looking to self inject now.
Thank you for all the work you do