I was diagnosed with B12 deficiency in 2017, my physical health has deteriorated substantial over the years. Why in the UK, do the medical profession take it so lightly? I have anemia, cerebral palsy which now affects the nerves dramatically in my in my lower limbs. Due to my problems, I just wonder how much or how many problems are contributed by B12 deficiency. My PA test was negative, I know this means nothing.
I have Hydroxcobalamine injections every 13 weeks and take B12 Compound daily.
With all the technology available to the health professionals, and yet nothing nothing seems to progress to improve life for us.
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Brookey
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I have diagnosed PA . Had numb feet , still only allowed B12 injection every 3 months . In the end I was forced to self -inject , as symptoms returned so soon after injection, and GP would not allow a more regular
Am lots better now and inject once a week . Perhaps you need to self-inject more regularly ? It’s worth thinking about . You cannot overdose on B12 .
I have asked myself the same question many times over ( WHY ) are so many of us suffering ? It is a seriously debilitating condition which is not understood by many Drs or consultants hence the need for sites such as this.
I have do not know why the medical professions typically do not apply the current science of B12 deficiency in a way to relieve suffering. What I do know is it is systemic which affects many people resulting in much preventable suffering which is a societal problem.
My problem was that I was suffering. My solution was to start injecting 1mg of Hydroxocobalamin every other day. In my case improvement was steady. It was not until I started supplementing with Vitamin B6 that I had a dramatic improvement.
Intellectually I doubt that I am going to be the first person to ever experience adverse affects of supplementing with too much B12 in the 60 years since it was first synthesized. Emotionally it took a lot of energy and effort to get over my resistance to self injection against medical advice.
The problem is medical advice and practice is often wrong. In the 1880's surgeons wore outdoor coats when operating and they carried their instruments around in their pockets. Bed linen wasn’t washed regularly and bandages and dressings were reused between patients so as not to waste valuable hospital resources.
In the 1930's cigarettes were considered beneficial, most GP's smoked. You used to be told to bed rest after a heart attack which has been proven to be wrong. And we were told that fat causes high cholesterol when it is really sugar and highly processed carbs.
I agree. Imagine what other things the medical profession is wrong about that we dont know?
It all lurks in the diet. And with the popularity of veganism, vegetarians, pescetarians and low meat eaters who eant to save the planet--along with nitrous oxide abusers--were heading for an epic B12 explosion that they can't keep covering over. Eventually, the plant-based Doctors will get it too and then they'll all wake up and realise they were wrong, their training was wrong, their whole concept of bodily functions was flawed.
And the pharmaceutical companies will just introduce vitamin therapies because we will all (should all) refuse their harmful prescriptions.
The above book gives a lot of information on b12 including case studies which might be relevant to yourself. I suspect the bottom line is that you may have to follow the advice above.
Basically, they do not get any training in nutrition.
If you Google 'anemia' you'll find plenty of entries for Iron deficiency anemia - a slower burning deficiency that is fairly easily managed with supplements.
There is next to nothing for B12 and folate deficiency. Its 'hidden'. And there may be a few reasons for this, but its primarily that medics do not go where they fear to tread. They are out of their depth and could not fathom how a 'simple' vitamin could devastate the body. Only a select few specialists would really understand - neurologists, hematologists. But even they have to gaslight patients when they find a victim of medical ignorance.
Basically, we humans DO NOT UNDERSTAND nutritional medicine. Yet, what we eat is the fundamental fuel for our body, which will breakdown if it doesn't receive all the nutrients it needs.
B12 is a very important one, and God, nature, the creator, whatever you believe it is put a 'pump' for B12 into our engine (our gut) and topped us up when we were born. And like running a car, we really should be looking inside the engine and making sure the pump works and has enough petrol to run.
Medics don't know any of this. They just think a couple of injections and off we go.
Thanks to the internet, we can enlighten ourselves to the reality that the medical system--like many systems--doesn't serve us.
When patients present with neurological symptoms, the medical guidelines to GPs are to administer every other day (EOD) injections until no more improvement can be gained by doing so - and then (and only then) reduce to a maintenance dose.
In medical advice, this maintenance dose is usually set at a frequency of one injection every two months. This is for life.
In reality, to my mind, it should be based on whatever frequency proves necessary to maintain the gains made by EOD injections. Otherwise the improvements can all be wasted - and you will have deteriorated enough to need to begin again with EOD.
To be honest, this level of medical knowledge and aftercare is difficult to find. It takes a skilled, confident and observant GP - who might well encounter resistance from nurses, other doctors and surgery management.
Nerve repair can take some time, even with frequent injections.
The nerve damage in your legs could be from not properly adressing your B12 deficiency - do you think this has been explored sufficiently ? Could a neurologist appointment be requested ? You could have spine MRI and electric nerve testing - or retesting if already done previously.
When you say you have anaemia, what is the cause of that and what treatment are you getting to address this issue ?
Have you had your ferritin, folate, vitamin D and thyroid checked/ monitored ? These are the most commonly affected when B12 deficient.
You say you have had a "PA" test - this was (guessing) an intrinsic factor antibody (IFAb) test. The trouble is that having a negative result does not prove anything. Those with pernicious anaemia (PA) have about a 50-50 chance of a positive result. The founder of the Pernicious Anaemia society, Martyn Hooper*, had to have three tests before getting a positive result.
Unfortunately, some GPs are ruling out the possibility of PA based on a single negative test return. Medical guidance advises against making this error - still happens.
There are more tests that you could ask for - methylmalonic acid (MMA), homocysteine, HoloTC (active B12) - but the results will be likely to be affected by B12 injections once started.
Not always though - despite having frequent injections, my MMA was found to be raised. It was not joining up and making proper connections with the injected B12 and so not effective at cell/tissue level: this is called functional B12 deficiency.
It took three years and six MMA tests and a bucketload of B12 before it finally dropped into normal range.
* Martyn Hooper: "What You need to Know About Pernicious Anaemia & Vitamin B12 Deficiency". This book was very helpful to me.
Point 1 is about being under treated for B12 deficiency with neuro symptoms.
You might be interested to know that NICE (National Institute of Health and Care Excellence) in UK are due to publish new guidelines on PA and B12 deficiency this year(2023).
Fingers crossed that the new guidelines will improve the situation for UK forum members.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Do you think it is better to wait for the new guidelines or show your first link to managing neurological symptoms to the gp? I am building up the courage to take evidence into my gp and maybe the new guidelines will be more useful.
B12 deficiency needs prompt and adequate treatment so if you suspect you're being under treated I think it's important to act now. I'm not medically trained.
New NICE guidelines on PA and B12 deficiency are not due to be published until Nov 2023. Point 1 in link below is about writing to GPs if under treated for B12 deficiency with neurological symptoms.
It is so difficult when gp after gp misdiagnosis you and thinks it is in your head. I really want help from my gp to manage my condition as most people here do. I will have the blood test (again) and see what 'else' this one can work out my symptoms might be. Then I can use the link you have sent. Thank you..
I hope your GP is aware that if B12 deficiency is under treated then there is an increased risk of developing neurological damage including damage to spinal cord.
It can be difficult to work out which problem is causing which symptom in people with complex medical histories.
PAS leaflet about SACD, sub acute combined degeneration of the spinal çord
You mentioned that your PA test was negative. Does your GP know that it is possible to have Antibody Negative PA? If not, maybe you could show them this flowchart.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines ( a UK document)
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Feeling better so soon after B12 injections?!?
how long did it take
Confused and humiliated 
