Pigeonholed by a mental health diagnosis

I cried. I was upset for me, lost career, broken relationships, years crippled in bed and money down the drain.”
 

Will this devastating account of loss resonate with you? Flo’s eloquently written experience sent to me in early September 2020 follows below.

Dear Tracey Witty,

I wish to express my sincerest thanks for all your work. I stumbled across your site a few weeks ago. When I read the case studies especially of Sara and poor Paul, I cried. I’m 47 and I had my first vitamin B12 injection yesterday and will be having another 5 over the next couple of weeks.

I had a diagnosis of bipolar in 2012 whilst working as a midwife. It was my first job and I became hypomanic. My sister who was studying medicine had suggested I had bipolar several years prior and I saw a psychiatrist who put it down to life events. When I realised in 2012, that my thoughts and behaviour were erratic, I visited my GP who referred me quite promptly. I was diagnosed, bloods taken (no vitamin b12) mood stabilisers prescribed but I soon became exhausted, forgetful and I couldn’t do my job. I could barely get out of bed and so became suicidal.

I rang my mum, she and my step dad moved me home where I remained in bed basically for nearly a year. During this time, I asked my GP to refer me as I had peripheral neuropathy in my feet and I had gone off eating fruit (it is relevant). My psychiatrist, kept insisting I walk 5k a day, I’d had a back injury as a midwife so was seeing a chiropractor 3 times a week, needless to say I told the psychiatrist where to go as he wasn’t prepared to treat me holistically.

I had started a little cleaning job which I struggled with as my whole body ached and my feet were painful but I’d skip breakfast, lunch and only eat dinner. My mum was diagnosed with lung cancer and so she asked me to move out. I found a nice place to live, ate healthily – chicken, vegetables and fruit. I didn’t realise how fussy an eater I am until recently but whilst living with my mother I ate whatever she cooked. By the time the appointment for my feet came through 5 months later my symptoms had dissipated. I was back in the gym, enjoyed going to the cinema, etc. I did keep having ups and downs which were quite seasonal but I was discharged from the community mental health team.

Until 2017, I felt awful, I went to my GP with the usual sore throat, swollen glands and flu like symptoms in early February after suffering for 5 weeks. This had always been put down to a winter virus. I went back five times with advocates, each time my condition was getting worse and worse. I wanted to see a rheumatologist and neurologist. I struggled to walk in a straight line, I had hand tremors and poor bladder control. I was told that there wasn’t a need and you don’t need analgesia. I referred myself back to the CMHT (Community Mental Health Team) as again I was suicidal. I wanted to do sport, I wanted to cook for myself but I just physically wasn’t able to. 

I moved Practice and the new GP was very receptive, I had a diagnosis of fibromyalgia, being a midwife, I’d kept diaries, so I had times and dates of symptoms. I also had read about the paleo diet which I had unknowingly done in 2014. I was referred to a private rheumatologist, a private neurologist and nerve pain prescribed. Thinking this was the answer to my prayers, I started to wean myself off the psychiatric medication but didn’t care about what I was eating. Needless to say, in 2018, I got sectioned for 6 weeks. Whilst there, I insisted on seeing the hospital GP as I knew there was something wrong with my body.

I wrongly assumed I had Ehlers Danlos syndrome, my joints hurt, I was chronically constipated and even though my thoughts were manic, I had fatigue. I then phoned the local private hospital and saw their GP. Whilst in hospital, I had gastrointestinal complaints and kept vomiting with exception for one occasion, I was only offered an antiemetic (anti sickness) injection. Only one person asked “what do you think is making you sick?” And I couldn’t answer because I couldn’t remember that I had had a positive blood test indicating that I had coeliac disease.

I have had a bad stomach since I was 21, for 12 years I barely ate, (it is quite common for females who have coeliac or non coeliac gluten sensitivity to have eating disorders). In my twenties, I had a couple of trips to A & E with excruciating abdominal pain, not pregnant, not appendix just IBS or trapped wind, I was just discharged.

Last week, I found the letter from the neurologist dated February 2018 where he had written in bold the actual figure of my gluten test and it was highly likely that I did have coeliac disease but I had told him that I didn’t want endoscopy as I struggled swallowing. I was pretty manic when I saw him which he recognised and the psychiatrist quoted my appointment with him at my tribunal (to continue my detention) but the information regarding my intolerance of gluten was not passed on.

When I was discharged from the psychiatric hospital, I was a broken and confused woman, afraid of my own shadow and I stayed like that for another year. I had insisted whilst an in-patient there that I see a dietician as I was starving all the time but by the time the appointment came through several months later, I did not have the energy to attend. I couldn’t remember how to do housework, how to go shopping, I was practically mute and my brain hurt all the time. I had a CPN beg me, “what can I do to make you better?”. She’d drive me to Boots, she’d sit in the car and I’d have to go in and buy a “meal deal,” whilst waiting in the queue I’d feel dizzy and think I was going to pass out.

On Monday 3 June 2019, I changed my diet, I removed junk food and would only have the occasional piece of bread a week. I dislike most other complex carbohydrates like pasta and noodles and within 2 months I was myself, not trying to stagger around like some drunk person. I was back in the gym, found a Tai Chi class , the psychiatrist had tried all different combinations of medication over the course of a year and when I saw her in August 2019, she said we’ve finally found it. In October 2019, she asked me whether there was anything physically wrong with me and I honestly thought I’d made it all up.

This January, I started becoming ill again, feeling like I’ve got the flu, sinusitis, bad stomach, erratic periods, joint pain and chilled to the bone. I’d complain about my symptoms at my weekly appointment to a psychiatric occupational therapist technician (OTT) but I’d also tell her what I’d done to help myself, like go to the GP, colonic irrigation, keep a food diary.

I was absolutely amazed when a reflexologist was able to tell me that my B12 and calcium was low and my small intestine that it was inflamed. I’ve had lots of reflexology and acupuncture before, but this was precision. I was pretty certain it was my diet but my OTT was having none of it and would tut and roll her eyes. When you have a mental health label you get quite a lot of discrimination. I realised that I was lactose intolerant one weekend after only being able to eat yoghurts with dire consequences and again I was back at my GP’s demanding blood tests. The results showed gluten intolerance, the OTT was astounded when I told her over the phone.

Over COVID I was pretty physically ill, my bloods looked pretty okay, I had fibromyalgia symptoms but it was okay, I’d ride the storm. Done it before, did it again, I knew why. I had home help, I clued up on coeliac disease. Then a new psychiatric occupational health therapist kept ringing me in July and suggesting I go back to do voluntary work as lockdown was lifting. It was so predictable, I tried but post exertion malaise hit me for 9 days after 2 two hour shifts 2 days apart.

Three weeks ago, I rang my GP and I tried to explain the fatigue and how the CMHT (Community Mental Health Team) did not understand, I felt I wasn’t making sense. I also told her that I’d been gluten free since March, I still could not tolerate fruit (for 4 months the thought turned my stomach, I now know fructose malabsorption indicates that the small intestine has been pretty damaged, worse than lactose). I was extremely fortunate that this doctor took control and wanted me to have repeat bloods including B12, vitamin D and informed me to get the OTT to ring the surgery.

I knew I was unwell as I had awful vertigo, tachycardia and was breathless – iron deficiency. I got my results printed yesterday, I knew very little about B12 deficiency until I read your website, bought Sally’s book and I cried. I was upset for me, lost career, broken relationships, years crippled in bed and money down the drain.

Tracey, there are somethings that you are pretty certain of in life, I know what is me, I know what happens to me when I eat large quantities of gluten when I was diagnosed, I’d kept making the girls on the ward cheese scones and mini sticky toffee pudding cakes which I had to sample of course. I’m fairly sure I don’t have a mental illness but it won’t be a biggie if I have to stay on a mood stabiliser. Both vitamin B12 deficiency and coeliac/gluten sensitivity is systemic. I’ve tried to convince my best friend but they do not have medical understanding, so NICE guidelines, the Lancet and BMJ isn’t really on their reading list.

I used to have friends who have mental health issues but I couldn’t really relate to them, their overthinking or not being proactive so I cut them loose. I’ve never had a panic attack, I don’t get anxious about meeting people or going out, I have never needed anyone to hold my hand. I’m quite capable of standing my ground and drawing boundaries. My quality of life has been poor for most of my adult life, it was not IBS. Yes, I was stupid to go back to eating gluten once given a result back in late 2017 as I didn’t realise the dire consequences of it.

I just wanted the opportunity to tell my story and I’d be grateful of just a quick email back saying you’ve read it, I’m happy to pay you £120 just for that, as your work is so insightful.

I’m quite into watchful waiting, you see what arises over a course of time and I do wonder what symptoms I will get.

I’ve decided never to knowingly eat gluten again and to decline the biopsy. Similarly, I’ll be keeping an eye on my vitamin B12 levels.

Thank you in advance.

All the best,
Flo C

________________________________________________

Flo is not alone in being ‘pigeonholed‘ by poor mental health. When physical causes are not explored and treated then the results can be devastating.Please see this page for the many causes of B12 deficiency.

And this page if you think you or a loved one may be B12 deficient.

I created my site 7 years ago last month to help educate both patients and health care professionals. This was because someone close to me was sectioned due to B12 deficiency and was also pigeonholed due to poor mental health. I’m also B12 deficient so understand the issues you face.

If you would like to help in a small way, please use the following link: https://www.b12deficiency.info/how-you-can-help/

Thank you, Tracey x

www.b12deficiency.info

Gloucestershire treatment algorithm is harmful and at odds with NICE

Gloucestershire is a beautiful county – but like the villages in Midsomer Murders, a potentially harmful place to live if you need B12 injections and your GP follows this Primary Care Management Treatment Algorithm. (4th section down).

How many B12 deficient patients are at risk of permanent damage in this area? How many struggle with poor mental health? How many are bed bound, confused, living in pain believing that their B12 deficiency is being ‘treated’ so wondering what on earth is causing their body and mind to feel like it’s shutting down?

There are threads on Twitter of doctors from Gloucestershire proudly sharing this treatment algorithm and feeling really smart because they were ahead of the COVID 19 curve in giving just about everybody oral B12 supplements.

It’s all in your mind…

I’ve heard of many patients being told that their debilitating symptoms can’t be due to B12 deficiency. That it’s more likely to be due to their age, their lifestyle, or the fact they have young children, or a stressful job, or – and this is the worst, that it’s all in their “imagination”.

So the long suffering patient is either sent to hospital to see every other Tom Dick or Harry in a network of ‘ologists’ often waiting months for appointments in order that it satisfies the urge of the GP to pin the symptoms on ‘something else’ because ‘it won’t be B12 deficiency causing the symptoms because your serum levels are really high at 200pg/ml.”

My own deficiency could have been ignored if I’d lived in this area. You’ll see they don’t appear to bother with people with serum level’s over 180pg/ml. I was diagnosed with a level of 216 (reference range of 220 -771). I wouldn’t even be worthy of the GP looking at the chart despite my many presenting symptoms. The problem of differing reference ranges of B12 levels has been well documented and the BMJ state that there is no ideal test and that the clinical picture is of utmost importance.

Terrifying isn’t it?

What’s really worrying about B12 deficiency and the way it is handled by those who have little knowledge of it, is that the patient very often starts off in the dark and then remains in the dark because they ‘trust’ that their GP is ‘all knowing’. They don’t consider that the information their GP has imparted is not complete, not properly informed, not helpful. They then deteriorate, but don’t question their treatment, don’t ask Dr Google, don’t seek more information because they have been either pushed down another path for a further red herring diagnosis or just simply ignored.

How to start treatment with B12 injections in Gloucestershire using this algorithm: 

  1. Your B12 has to be lower than 180pg/ml
  2. You must have neurological symptoms (on their list)
  3. You must have macrocytosis and anaemia
  4. You must be positive for anti intrinsic factor antibodies – (but after loading you will be put on oral tablets!)

But if you are not presenting with the list of ‘allowed neurological symptoms’ i.e. those recognised by your GP – and you have no anaemia (which by the way, is not always present and can be a very late stage symptom) then, even if your result falls between 150-180 – the GP is instructed to:

“Reassure the patient that this is unlikely to be of concern. Recheck serum B12 after 3 months, if still low, monitor B12 level every 6 months for 1 year and then annually for 2-5 years.” 

Now I’m no rocket scientist but even I know that this is pure bonkers. It still offers no treatment.

B12 deficiency comes in all shapes and sizes, with many causes and many symptoms

If I use my own case as an exercise of using this algorithm here: –
My level was 220, I had no anaemia, no IFA, no neurological symptoms that they list, but I was losing my memory, I had bowel and bladder problems, blurred vision, insomnia, anxiety, low back problems to name a just a few and yet I wouldn’t warrant treating. I dread to think how quickly I would have been confined to a care home with early onset dementia if I had been ‘cared for’ here.

Even if I had PA, if my GP had used this chart I would be placed onto oral tablets following the loading dose. This is complete madness. (Please see more on the low quality evidence on oral supplementation  here)

If my deficiency had been caused by malabsorption due to a drug such as metformin for diabetes I would have been advised to take calcium supplements or increase dietary calcium but would not be  given B12 injections in fact I would only be allowed B12 oral tablets. This is totally bizarre, misinformed guidance.

Where is the patient?

At no point does this algorithm suggest LISTENING to the patient or considering the clinical picture. The patient doesn’t exist here, just blood forms and it’s completely wrong.

The only tiny mention ‘people’ get here is the suggestion that buying oral supplements over the counter may be cheaper than the NHS Prescription charge. WOW.

This algorithm is at odds with NICE guidance and is a ridiculous home-made protocol which won’t work for the vast majority. It’s time for Gloucestershire to start following good practice for patients.

What NICE state:

  • 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

So what can be done?

If you are in Gloucestershire – (or anywhere else this is happening), why not take action to make change? Your voice counts and you absolutely matter.

Why not contact;
The Expert Patient Programme – (The EPP is an NHS initiative to improve the lives of those living with long-term conditions such as diabetes, Parkinson’s, lupus, epilepsy, ME, arthritis, fibromyalgia or heart disease). NHS Gloucestershire offers the Expert Patient Programme (EPP) which you can access by telephone on 0300 421 1623

B12 deficiency is a long term condition, you have a lot to offer, make sure you are represented! Get you voice heard here and ask for their help.

Healthwatch
You could also call Healthwatch Gloucestershire on 0800 652 5193 tell them your story, ask for their help in accessing correct treatment.

Write to your CCG, why not email your MP and maybe send them this blog? Why not ask your friends and family to do the same?

The BSH have recently bowed under public pressure let’s help Gloucestershire to do the same here, make your voice count!

Don’t let your GP take you down Folly Lane, there is no time for foolishness or delay in treating B12 deficiency, time is of the essence and you deserve every chance possible of repairing your nerves.

Very best wishes

Tracey
www.b12deficiency.info

If you think you might be B12 deficient please click here, and please try not to supplement before testing.

Please add your signature here if you would like to support making B12 OTC in the UK – Please DO NOT pay to sign! Any money given does not go toward the cause you are supporting.

 

Have you been told to shut up about B12 deficiency?

Something happens to people who discover they are B12 deficient, it seems that an internal switch has been flicked and it leaves you with an uncontrollable urge to tell everyone you know and even people you don’t know about B12 deficiency.

Sometimes this has a positive outcome, sometimes what you say falls on deaf ears and sometimes expletives are involved. You may even experience stonewalling from you doctor.

Your B12 spotting radar becomes highly attuned and when you see a child with a few grey hairs or someone mentions they have fibromyalgia you feel compelled to explain about B12 to random strangers.

People outside our shared experience don’t understand the seemingly obsessive and bizarre behaviour they are confronted with.

They think that your focus in every living moment is infused with B12 deficiency. They hear B12 deficiency blah blah B12 blah blah blah B12 blah blah……

Over the years I have driven my family and many of my friends (who I felt could be B12 deficient) completely bonkers to the point where they ridiculed rather than listened.

They switched off internally and in panic, this made me ramp it up even more.  To see the symptoms, know the family history and not say anything, feels like walking by a person dying in the street and not helping at all.

This situation is hard to take, especially when it’s someone you love who is ignoring your concern and you are simply asking them at the very least, to have B12 deficiency ruled out.

The thing is that not everyone is confident about asking for anything from their GP, most people wouldn’t dream of questioning a doctor or suggesting something to them, they might feel rude and disrespectful – and after all, shouldn’t the doctor know best?

Even though we might think we’re discerning and can spot a mile off where we think B12 deficiency is occurring, our friends and family think we think it’s everywhere and everyone has it, even the next door neighbours budgie.

We know that B12 deficiency is very common and due to a lack of education and commonly misdiagnosed, so it’s natural that you will sound like you think everyone has it.

I want to make the point that I don’t think everyone has B12 deficiency at all and that I’m fully aware of its shared symptoms with other common conditions, but I can’t help but say when I see a situation where I feel it should be confirmed or ruled out.

We were sat in traffic the other day and I saw a super market lorry go by it’s sides featuring an ad with a smiling model. I could see her swollen tongue, it’s sides were indented just like mine gets when I need my injection . So naturally, I want to find her and tell her to get checked .

A friend of mine who is type 1 diabetic and a solicitor, was struggling at work through total exhaustion, she also had numbness and tingling in her hands and feet which the GP had of course told her this was due to diabetic neuropathy. (Why wouldn’t he? He’s never been fully trained in B12 deficiency). I nagged her to get tested. I knew she wanted a family and I couldn’t bear the potential that her fertility might be affected.

I was so happy that once her results were in, the Practice rang and asked her to go urgently for her B12 injections.

My grandma had a diagnosis of PA but my mum, who to me had a multitude of symptoms, was attributing those she recognised she  had, to pre-existing conditions. This is of course completely natural but very frustrating for those who recognise themselves in the one they are trying to help.

Breathing difficulties can be put down to asthma, COPD etc,

Back pain to wear and tear,

Incontinence to pregnancy,

Depression to work or family situations,

Tinnitus to loud music or noisy work environments

IBS to stress  – I could go on and on, and of course these can all be factors – but, what if they all improved with the right frequency of B12 injections?

Very often it’s quite clear that undiagnosed B12 deficient patients don’t recognise their own symptoms, it’s those around them who see that they are irritable, apathetic, depressed, and it’s when we are so poorly that we don’t want to be told we might have a ‘condition’. Certainly not one that requires injections.

The person you are trying to help might feel picked on or pressured to do something that they simply can’t tackle and they may feel totally out of their depth in discussing this alien subject confidently with a doctor.

They may get angry when you mention B12, they want you to stop badgering them and they may well decide that the doctor must know best.

I suggest you keep your B12 radar on but perhaps only say “I think you should have your B12 checked” just twice and then leave it.

If you can.

It will be very hard.

You will feel like you want to explode.

You will want to shout from the top of your lungs.

I’m finally learning that sometimes less is more, although I do feel as though I’m fit to burst each time I’m confronted with somebody who has a tremor, mania, stroke etc and has not had B12 deficiency either confirmed or ruled out or who is only receiving three monthly injections it still gets me – really gets me, and I ramp it up again. I’m sorry, I can’t help it.

What is astounding to the newly diagnosed and correctly treated, is the incredible flowering of their personalities, the clearness of their minds, the lifting of depression and an all round improvement in their well being. Their renewed ability to move more easily and have stamina where they thought it had gone for good and it’s only then, when we sigh with relief that the nagging – (even though it’s taken umpteen years), can stop because finally your loved one is safe B12 wise.

I have never managed to mention B12 just twice yet – but I am working on it.

The message is never give up, keep your B12 radar on but use your judgement on how far you can push it with your friends and family. At some point (and it may be years in the future) they will be grateful for your persistence.

So really this post is an apology to anyone out there who has wanted to gag me, but it’s also a message to everyone like me who does this – that we want everyone we’ve driven to distraction, to know that all the nagging comes from a place of love and care.

It’s also a thank you to Damian, who has never once told me to shut about B12 deficiency and helps this cause immensely.

And for all those who can get their loved ones to read this post – they may want your help in getting to the place where you are.

Wishing you all the very best.

Tracey x

 

Sally Pacholok mentions this phenomena in Could it be B12? An Epidemic of Misdiagnosis

Pat Kornic’s open letter may help to share with your families too.

A huge thank you to Dr Marjorie Ghisoni, who gets what I do and why I do it! Read here.

If you think you may be B12 deficient PLEASE DO NOT supplement before testing. Please see this page and use it as your crash course!

 

A serum B12 level can’t tell you how a patient is feeling, only the patient can, but why is no one listening?

Is your doctor allowing you to sink or swim?

How are you feeling? Are your symptoms improving? Do you need more frequent B12 injections……? These questions are very rarely asked of B12 deficient patients regarding their treatment. Too many patients remain ‘seen’ but not heard. Never heard.

Why has the medical establishment become so averse to listening to B12 deficient patients?  To treating symptoms and to acknowledging this fundamental nutritional requirement?  Why are we not offered the same listening ear as those with other conditions might be?

The patient is ALWAYS the expert on how they are feeling, not some serum B12 level or any maintenance guidelines which bear no relationship to the patient experience.

lifeboy-b12

Loss of a great relationship  

Any visit to the doctors can be an ordeal. You may be feeling, vulnerable, tearful, in pain, stressed, anxious and not wanting to waste the doctor’s time. But, the incredibly healing benefit of just ten minutes of really being heard, experiencing kindness and compassion and having a plan of action, is profound. We leave knowing our doctor is trying to help us. That ten minutes being reassured and cared for creates a phenomenal level of trust.

B12 deficient patients, in many cases, experience a completely different relationship with their doctor when requesting an increased frequency of B12 injections, finding that a couple of weeks after their injection their debilitating symptoms are back with a vengeance.

The very same Doctor who helped them through rough times, cared for them through pregnancy or trauma can become distant, defensive, unfeeling and even angry.  It’s as if an invisible wall is built,  eye contact is limited, and communication is almost strangulated. The usual empathy may be replaced by flippant, incorrect comments about B12 being a placebo, that B12 deficiency is ‘over diagnosed’ that people want too much, get addicted to it and that there is no evidence to suggest that it actually makes a difference! 

There’s an inability on the part of some GP’s to demonstrate compassion or understanding for a patient who is struggling to function on three monthly injections. The current situation means that some patients are able to function for only 8 weeks out of 52.  Many GP’s are refusing to treat symptoms, whilst concern with B12 serum blood levels takes precedence over common sense. Ignoring how the patient feels can lead to feelings of confusion, anger, desperation, and fear. What are they supposed to do?

Patient’s who are in pain, exhausted and confused need more B12, not less – but this fact is not understood by those who should be caring for us.

This ‘new’ attitude from the GP may cause fractures in, or even a complete death of their previous good relationship. For those patients who feel they’ve upset their doctor by asking for more B12 or who fail to articulate what they need it may mean that they will try to struggle on alone. This is a shocking and intolerable situation for a patient who previously had an excellent relationship with someone they completely trusted to care for them.

What usually happens in the UK ….

In the main GPs prescribe loading doses (6 injections over two weeks) and then automatically place patients onto three monthly injection regime regardless of the severity of their symptoms. This is very often done without discussion with the patient – in fact without any kind of consultation whatsoever. It might be a nurse who delivers this information and who sticks rigidly to the exact date three months later for the next injection. It is not uncommon for patients who try to have their injection a couple of days early only to be turned away distraught.

This situation can leave the patient bewildered about why their inexpensive injections are rationed, knowing their lack can cause widespread, permanent damage. This condition is so simple and easy to treat but B12 is withheld due to lack of education.

Patients restricted to 3 monthly injections are commonly offered strong painkillers, Gabapentin, amitriptyline, and other antidepressants, all manner of symptom modifying drugs in place of the vitamin needed to repair their nerves.  There’s something seriously wrong when a GP insists on exploring dementia in a symptomatic patient in their 40’s, rather than treating a B12 level which is just within range.

Retesting serum levels

Once a patient is being treated with B12 injections, it does make sense to check the serum B12 level in the beginning to confirm that the patient is responding to treatment. If there is a good response then no further testing is required. Continual retesting of serum levels prior to an injection (and in some cases just a few days after) is a total waste of time and money and it’s clear that some GP’s are mistakenly using a ‘within range’ result as a reason to stop B12 injections.

The sole reliance on B12 serum levels to decide whether a patient is well or not is entirely illogical given that many patients with a B12 level up in the 1000’s may still be experiencing incredibly painful and debilitating symptoms. They may be suffering from a failing memory, an inability to walk, to stay awake and terrible anxiety.

A high serum B12 level post injection is not showing any toxicity, it is also no indication of the level of nerve repair but repeatedly patients are told:

‘your levels are too high’,
‘we need to stop your injections until they come back down’
‘you no longer need B12……..’

There is a genetic problem which is thankfully highlighted by the NHS – ‘functional B12 deficiency,’  it would be helpful if our GP’s were all made aware of this;

http://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’.

B12 is a water-soluble vitamin, the vast majority of the injection is excreted via the bowel and bladder within 24 hours. B12 has to be replaced frequently in order to aid recovery of the myelin sheath. Serum levels can remain high for up to four months, this does not mean there is an accessible reservoir of B12 sloshing around the body.

If your GP or nurse continually suggest retesting your B12 levels, ask why? And feel free to refuse unless there is any clinical need. You will be saving your blood and your time and that of your practice too.

• A very high serum B12 level without any supplementation obviously requires investigation and I often wonder if this is where our GP’s are getting mixed up?

Superior treatment for other conditions, a stark contrast 

If you are a diabetic patient, the overwhelming difference in the level of care is plain to see. You will be checked, monitored, consulted. You’ll have regular retinopathy and foot checks. You may be assigned a specialist diabetic nurse and you will be asked how you feel.

You will not have restricted medication, you will be taught and trusted to self inject, and you may even be sent on courses to learn about your condition.

In stark contrast, the majority of B12 deficient patients are discriminated against whilst requiring exactly the same care. All clinicians need to grasp the fact that B12 deficiency is a real and serious condition.

One size treatment cannot possibly fit all

As many of us know and feel keenly, four injections per year cannot correct the body’s starvation of B12, just as only four buckets of water a year wouldn’t help a tree in drought and only four breaths of air wouldn’t help a deep sea diver. One size cannot possibly fit all for many medical treatments.

Reports of widespread pain, poor memory, poor mental health, balance problems, deafening tinnitus, fatigue, and incontinence are totally ignored as if the patient is totally mistaken about the state of their own health. If they happen to have existing diagnoses of fibromyalgia, depression, CFS, diabetes (etc) or they’re menopausal or even a new mum – their symptoms may be attributed to these conditions instead of being recognised as under treatment of B12 deficiency.

B12 injections are safe, life saving, non-toxic and inexpensive. There is no clinical evidence for this restricted regime, it is entirely based upon cost saving audits.

Bizarre letters stop B12 treatment

You can see the situation which affects so many patients from this letter below. These letters which stop vital B12 treatment, are randomly sent out and are expected to be met with compliance despite the fact that without any solid evidence or consultation, it has been decided the patient can miraculously absorb and utilise B12.

tracey letter

The statement “Evidence has come to light that in many cases B12 injections are given too easily, or are inadvertently continued after the loading dose injections.” is ludicrous.

I hope that recipients of these letters ask to see the source of this ‘evidence’ and I wonder what it is. The idea that B12 injections are ‘given too easily’ is a bizarre comment given that so many patients probably feel that completing the Krypton Factor, running ten miles through quicksand whilst wearing high heels two sizes too small, might be an easier challenge than ‘qualifying’ for an essential vitamin injection.

There may be some odd formula for sending out these letters – there is no clue as to why this practice have decided the patients can now absorb B12, what test they used. Perhaps a mistaken reliance upon post injection serum B12 levels to determine that patients have enough B12 and are now ‘cured’ – perhaps even picking names out of a hat?

They state “we need to prove that people cannot absorb the carrier across the stomach membrane.”  The sentence itself doesn’t make sense. What is the ‘carrier’? Do they really believe that by simply telling the patient “You are one of a cohort of patients who have been tested and should be able to absorb B12” the job is done?  They are placing the onus on the patient to prove they can’t absorb B12 without any discussion whatsoever.

There seems to be a movement towards only treating patients who are confirmed to have pernicious anaemia, (this may be what this letter is about). This is totally ridiculous given the many causes for B12 deficiency. Each is serious and each requires treatment by injection unless the deficiency is of proven dietary lack. The reality is that the test for pernicious anaemia (Intrinsic Factor antibody) has low sensitivity resulting in many false negatives. This information escapes too many GP’s.

The sad fact is that some who receive these letters will believe what is written – or may not have the strength to fight for their health.

Deterioration caused by B12 deficiency is slow and insidious, it takes a while to repair the fatty coating of the nerves (myelin sheath). Six injections over two weeks cannot possibly reverse all the damage in every patient even though we all wish they could.

Me and millions of others would be ecstatic to find that suddenly we really could absorb B12 simply because we received a letter saying so – but this letter and all the others like it are complete poppycock, not to mention harmful. As usual in B12 deficiency, the PATIENT IS NEVER CONSULTED, everything is decided without their input.

Oral supplementation for patients who cannot absorb B12 from food would be a futile exercise. We urgently need our clinicians to understand that this can lead to permanent neurological damage, raising serum levels but allowing deterioration to continue.

This letter states that: “If you are taking folic acid then it’s important to take vitamin B supplement to prevent damage” the author is apparently ignorant of the harm that will follow without B12 injections.

The one sensible statement included in the letter is that vitamin B12 “is water soluble and therefore not dangerous to take in excess,” very refreshing.

It is vital that all primary care doctors, nurses ,midwives and specialists in all areas of medicine are educated about the seriousness of B12 deficiency and the fundamentals of nutrition.

If our doctors are unable to feel that they can take clinical responsibility for frequent B12 injections (even though this is what is stated in both BNF and NICE Guidelines) then it becomes even more urgent that UK patients are able to buy injectable B12 over the counter in order to look after their own health.

Isolation and hopelessness

There are many things that patients who are B12 deficient can’t understand about the way they are treated once they become diagnosed with vitamin B12 deficiency.

Of course some doctors do treat their patients correctly and fully support individualised treatment. For the rest, B12 is restricted and the battle for treatment begins in those who have the strength and/or the support of loved ones.

Some patients believe their GP is correct when told that too much B12 would be harmful.  Others feel forced to accept the situation because their partner or family member insists the GP must know best, finding themselves totally isolated and without hope.

Nobody wants to have to fight for health especially when they are on their knees, mentally and physically.

If you are a patient who needs more B12 and face the challenge of requesting this, taking somebody with you to the doctors for support can be invaluable. Just a squeeze of a hand and reassurance that you are not alone can make the world of difference when trying to communicate how you feel in pleading your case. Writing down what you need to say will help you to remember all your points. The NHS constitution may be a useful tool to help in accessing better treatment for UK readers.

The very least a patient can expect is to be listened to and taken seriously. Ensuring that this happens would make the job of the GP easier and their overall workload lighter, saving the NHS millions. It would be interesting to know just how many appointments are taken up by undiagnosed or under treated B12 deficient patients. Now there’s a research project worth carrying out.

Are you in a situation where you are not being heard and feel isolated? Please don’t give up, join this fantastic support group where you will find help from so many members in the same boat.

REMEMBER this is your life, your health and YOU MATTER. You are the expert on how YOU feel, no one else.

Are you a doctor reading this, do you know how we feel?

How would you cope with your job, family, home if for  only 44 weeks out of 52 you were unable to function? Can you give us your side of the story? Anonymously?

If you can, please email in confidence to tracey@b12deficiency.info.

www.b12deficiency.info Twitter – @B12info Facebook

 

B12 the Antidote – joining up the dots

We may be exposed to poisonous gases and chemical toxins to different degrees at some point in our lives, whether it be from air pollution, exhaust fumes, pesticides, cleaning products or from faulty or poorly fitted appliances within our homes or workplaces.  Flood, fire and warfare are all situations where potential exposure to toxic gases can occur.

However, B12 in the form of hydroxocobalamin is an excellent toxin scavenger, this means that if you are exposed your levels of B12 could be inactivated and depleted.

Could you be an unknowing victim? Do you have diagnosis of CFS, ME, fibromyalgia, depression, Alzheimer’s and have not had thorough screening for B12 deficiency?

Late last year I met Belinda Goldsmid, she and her family were chronically exposed to products of combustion, including carbon monoxide (CO). It was leaking into their home from a poorly installed and situated boiler flue. This had devastating health and social effects. Continual low level exposure can can lead to chronic ill-health, poor mental health and extremely debilitating symptoms.
Belinda is now experiencing phenomenal improvement of her previous debilitating symptoms with the use of B12 (hydroxocobalamin) injections. Following this, Belinda asked for my help in finding research papers documenting the use of B12 as a treatment for toxic exposure, including the silent killer carbon monoxide.

Maybe the origin or the exacerbation of your B12 deficiency can be traced back to toxic exposure?

For more information please see our new page, www.b12deficiency.info/b12-the-antidote

Belinda was helped by the charity CO Gas Safety, you can find more CO charities here.

If you think you might be B12 deficient the What to do next page is your starting point.

If you want to learn more about B12 direct from Sally Pacholok please see our Conference page