How many times are people told that their debilitating symptoms of vitamin B12 deficiency can’t be due to B12 deficiency because the piece of paper from the lab says so?
How many times are people told they can have some antidepressants but they can’t have B12?
How may people are given heavy drugs such as Amitriptyline and Gabapentin for their ‘nerve’ pain but they can’t have access to the B12 injections that will treat and heal the nerves that have been affected by B12 deficiency?
NO ONE is ever deficient in drugs but they often are in nutrients.
How many people experience gas lighting – being told they are imagining ‘it’ when they try and access vitamin B12 injections for their dizziness, exhaustion and irritable bowel?
How many people are arrested due to the anger and violence they manifest due to their deficiency?
How many people are misdiagnosed with other conditions because a ‘within range’ result threw the doctor off the scent?
How many people experience psychosis and end up on mental health wards because of a failure to understand how B12 deficiency affects the nerves of the brain?
How many people are sent for unnecessary brain scans to look for brain tumours whilst their low, but ‘within range’ serum B12 level is ignored?
How many women are told that their symptoms are not due to B12 deficiency, it’s because they have…
A new baby
Young children
Teenage children
Another health condition
A lack of exercise
A busy life
A stressful job
A bad relationship
A negative attitude
The menopause
Elderly parents
How many mum’s with B12 deficiency are accused of Munchausen’s by proxy when they try to access B12 injections for their children who have the same symptoms as them, who are failing to thrive, can’t make it to school and have no interest in being with friends?
How many men fail to access B12 injections because it is viewed by many doctors as a female condition?
When people are treated correctly for B12 deficiency…
The lights come back on, the world looks different, it feels different, they finally understand how ‘normal’ people experience life.
They start to socialise, make connections with friends they haven’t seen for years, they climb mountains and take up sports they couldn’t have had a hope of trying before.
They can read again and remember how to play the piano, cook and spend time with their families in a way that just wasn’t possible without life saving B12 injections.
Don’t we all have the right to feel really well?
Paper versus people
Most of the problems encountered with vitamin B12 deficiency are due to ignorance. Our healthcare professionals have not been taught fully about the condition – or nutrition as a whole and consequently tests and the paper they are printed on is given precedence over people.
This is wrong, how people feel is key.
Testing for B12 deficiency even if you can access it, can be fraught with problems. The serum B12 test has known limitations which is why Point 4 is so important.
So what is Point 4?
This is the part of the website I send so many people to when they are at the beginning of the journey back to health. Point 4 helps our doctors and health professionals to see the documents which explain the limitations of testing and to concentrate on the clinical signs and symptoms reported by their patients. It can be found on the What to do next page at point 4!
I add some key text below:
If you are symptomatic your serum B12 level could still show as ‘within range’ this test is known to be inaccurate. Please see the NEQAS B12 alert which explains about ‘false normal’ results and warns not to delay treatment. “In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed”.
It is important to understand that the B12 serum test records both active B12 which can be used by the body and inactive B12 which can’t. The test may record as much as 80% of inactive B12 otherwise known as B12 analogues.
Read here from the NHS website – www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Diagnosis.aspx
‘A particular drawback of testing vitamin B12 levels is that the current widely-used blood test only measures the total amount of vitamin B12 in your blood. This means it measures forms of vitamin B12 that are “active” and can be used by your body, as well as the “inactive” forms, which can’t. If a significant amount of the vitamin B12 in your blood is “inactive”, a blood test may show that you have normal B12 levels, even though your body cannot use much of it. There are some types of blood test that may help determine if the vitamin B12 in your blood can be used by your body, but these are not yet widely available.’
This Clinical Review from the BMJ on B12 deficiency states:
“There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance.”
and:
“If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features”
A ‘normal’ serum B12 level can indicate a Functional B12 deficiency, this is a genetic condition which your doctor should investigate;
www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Causes.aspx
‘Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood. This can occur due to a problem known as functional vitamin B12 deficiency – where there is a problem with the proteins that help transport vitamin B12 between cells. This results in neurological complications involving the spinal cord’.
http://pn.bmj.com/content/9/1/37
‘We describe a case of functional vitamin B12 deficiency where the repeated measurement of a serum B12 level within the normal range led to delay in the diagnosis of subacute combined degeneration of the spinal cord, and possibly permanent neurological damage as a result….’
_______________________________________________
I hope that the documents here give both you and your doctor the chance to reassess vitamin B12 deficiency. To help you to understand that if you have symptoms, perhaps a family history and you have identified causes, your instincts are correct and that you are barking up the right tree. To help your doctor to understand that the clinical picture IS OF UTMOST IMPORTANCE.
Much love
Tracey
www.b12deficiency.info
Great to finally have a proper explanation.. I have many symptoms related to b12 deficiency & still get “ normal” result .. However i now have to pay privately every 3months for b12 injection, i have a some relief but due to having helicopater 6 times in 5 years i think i can’t absorb it very well ! Gp’s don’t seem to care – antibiotics & anti sick .. Thank you for all the links & sourcing the info 😌
Hi tracy what if your mcv and mch and mchc all raised above ref range and your platlets are dropping is this a sign your b12 folate deficient. Tks
They certainly can be part of the picture Yvonne, please see https://www.b12info.com/testing/
Thank you as always Tracey,
I might have section 4 tattooed on my body. 😉
Wow! x
I have B12 every 12 weeks I feel that I’m a problem because I tell my practitioner that I think I’m getting nothing at all from some of my injections (I’ve been on it from the age of 27 now 65) bloods taken last time with no cause for any other action as it’s normal I wish to god I felt normal
You are not the problem Sue, it is the treatment regime.Many people cannot cope on 12 weekly injections, it is how you feel that should dictate when you receive your injections. Please see https://www.b12info.com/the-tanks-empty-but-i-can-smell-petrol-so-you-have-90-days-more-driving-ahead-of-you/
A light has gone on from reading this and looking through your site. Thank you! 🙏
My serum levels were just below normal, so I got the 2-week loading, followed by 3-monthly injections. Not having any noticeable impact.
GP convinced that we should rule out B12 deficiency but I feel sure, given symptoms (incl neurological).
Have found a strong sublingual B12 supplement but don’t want to skew the follow up blood test in a few more months. Also considering a private test to determine ‘active’ B12. How far in advance of the test should I stop taking the supplement?
Thanks for all that you’re doing to raise awareness!
After 25 years of B12 injections as a result of diagnosis following hospital investigations my current GP left me a message saying my B12 is now being stopped because my bloods are within the normal range six weeks after my last injection. I am feeling very frightened as I had significant neurological issues before being diagnosed and have since been told I have oligoclonal bands in my spinal cord likely as a result of previous deficiency. What should I do?
Dear Angela
This is something you need to challenge with the GP, try the Practice Manager first.
Ask for something in writing from them and let them know that they should not be testing your B12 levels as you are on treatment and therefore your results will not be accurate – nor will they reflect what is happening at a cellular level. They should be listening to you and how you feel.
Let me know if you need my help. Please see: https://www.b12info.com/contact-me/
Very best wishes
Tracey