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

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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

Severe mental impairment, are you getting the financial help you’re entitled to?

Many of us have been deeply affected by COVID and the resulting restrictions, the effects on mental health, physical health and finances have been devastating for too many people. So I hope that in some small way this post helps those who have not applied for what they should be claiming from their council.

This post is for people in the UK who pay Council Tax and live in England, Scotland and Wales. Northern Ireland has a slightly different system so please see the link below.

A big thank you to my lovely mum for sharing this information with me.

The following text is from the excellent Martyn Lewis, Money Saving Expert website and details ‘how to claim’:

“Who is eligible for the severe mental impairment discount?

Both of the following must apply for someone to qualify for a severe mental impairment (SMI) council tax discount:

  • They’ve been medically certified as being severely mentally impaired. For example, this may be the case if they have dementia, Parkinson’s, severe learning difficulties or have had a stroke. It will depend on each individual’s case though and simply having been diagnosed doesn’t automatically mean they qualify –  a doctor must also certify they are severely mentally impaired.
  • They’re eligible for (but NOT necessarily actually receiving) at least one of the following benefits:
      • Incapacity benefit
      • Attendance allowance
      • Severe disablement allowance
      • Disability living allowance (higher or middle-rate care component)
      • Increase in disablement pension (due to constant attendance being needed)
      • Unemployability supplement or allowance
      • Constant attendance allowance
      • Income support (which includes a disability premium)
      • Personal independence payment (standard or enhanced daily living component)
      • Armed forces independence payment

    In England and Wales you can also be eligible for:

      • Disability working allowance (based on getting income support including disability premium)
      • Universal credit (including an element for limited capability for work or limited capability for work and work-related activity)

    In Scotland you can also be eligible for:

    • Tax credits (including disability element)
    • Employment and support allowance
    • Universal credit

Just to be clear, some councils wrongly tell people they need to be receiving these benefits. That’s not correct – the law simply says you need to be eligible for them.

In Northern Ireland it works differently

There’s a rates system there instead of council tax, meaning every property is valued individually. The only roughly similar discount is the disabled person’s allowance, which gives a 25% discount on rates for homes where a disabled person lives and the property has been adapted to suit their needs. See full info on the NIdirect website.”

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This link also walks you through the steps of how to calm a rebate and how to claim if you live with someone who was eligible but has since died.

The money comes from Central Government and not the individual councils and this has been highlighted over the years by MSE because only a fraction of people who are eligible actually claim. Check if you can, all conditions are not listed and each case is individual, you have nothing to lose.

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So if your B12 deficiency has lead to severe mental impairment (SMI) or you know anyone at all who should claim, please pass this information on and don’t be fobbed off!

 

 

We are all still trying to get used to life again and unravelling the mysteries of how to do normal things, how to communicate, who we can and can’t see or touch, where to stand, what to wear, how to shop and how to generally be, this takes its toll in many ways and impacts us all differently.

I have struggled with the separation from people in this period and many of us have experienced loss or a sense of loss and a whole heap of confusion.

Some of us try to look like we’re coping on the outside but it’s turmoil within, this can result in even more isolation and less contact than we are now allowed. So if you are struggling, please make sure you let someone know, just so that they can quietly keep an eye on you. We all need each other.

My advice back in March, for what it’s worth, was to limit exposure to the news, I still hold solidly to that, so much of what is given out induces fear, anger and anxiety.

A very wise woman (Lynne M) once taught me about the power of baroque music in times of great stress and although not baroque, I hope this link may be of interest to you.

I’d love to hear from you so please comment below.

Kindness always,
Tracey x

www.b12deficiency.info

P.S Just a quick note to let you know I am still working with my MP on trying to make B12 OTC in the UK. I will keep you updated!

 

Can you spare a minute for Matthew?

In November 2012 Matthew Leahy was admitted to a Mental Health Unit  – The Linden Centre, Essex where he was found hanged seven days later. He was just 20 years old!

Matthew’s mother Melanie has since become aware of his low vitamin B12 levels, and probable coeliac disease. His symptoms included; psychosis, depression, insomnia, exhaustion, constipation and stomach problems.

I’m reaching out to ask you to sign Melanie’s petition; https://petition.parliament.uk/petitions/255823

From Matthew’s records it appears the first sign of B12 deficiency was recorded in May 2011 at a level of 127pg/ml, reference range 180 -914. In June 2011 low B12 was recorded again.

In Matthew’s notes it states that in July 2011 his B12 level was 154pg/ml and that B12 was prescribed, however, this was not given by injection, if at all, because in August 2011 Matthew’s B12 level had dropped to 122pg/ml.

It is also clear from Matthew’s notes that his thyroid function was impacted.

Matthew’s B12 levels were below range and dropping. See the note to the GP that they state “T4/TSH and B12 were ‘slightly abnormal and kindly arrange follow up blood test”. BUT NO treatment for these was instructed or given.

You can see that below an extremely low level of 122pg/ml is recorded as ‘normal’. Matthew was heavily symptomatic for both B12 deficiency and thyroid dysfunction and despite repeated testing, correct treatment was not given.

If you are from the UK please sign this petition and share this blog. Melanie needs to reach 100,000 signatures by the 6th of November for her petition to be discussed in Parliament – this date has been brought forward from the 23rd of November due to Parliament closing for the General Election so it is a race against time.

At the time of writing the petition has 54,050 signatures.

Melanie’s aim is to have a Public Enquiry into the failings surrounding Matthew’s death in order to help stop this happening again.

Please sign by following this link; https://petition.parliament.uk/petitions/255823

You only need to give your name, email address and postcode and then you must confirm the email from the Petitions Team for your signature to be counted.

UPDATE 

There is now going to be a debate on the 30th of November – many of us will have received the email below:

Dear Tracey,

Parliament is going to debate the petition you signed – “I request a full public inquiry into death of my son, Matthew Leahy. (20 yrs.)”.

https://petition.parliament.uk/archived/petitions/255823

The debate is scheduled for 30 November 2020.

Once the debate has happened, we’ll email you a video and transcript.

Thanks,
The Petitions team
UK Government and Parliament

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The connection between poor mental health and low B12 was made over 100 years ago but too many remain untreated despite severe symptoms and low B12 levels. Please see; http://www.twitlonger.com/show/n_1s0ggga

If you or your loved ones are experiencing mental health problems and B12 deficiency hasn’t been explored please see; https://www.b12deficiency.info/b12-and-mental-health/ and;

https://www.b12deficiency.info/what-to-do-next/

#matthewleahy #matthewscampaign
#MatthewLeahy #aminute4matthew
You can visit Melanie’s website here and FaceBook 
If you are experiencing problems with accessing treatment;
Thank you for your help in signing and sharing.
Best wishes
Tracey x

A year to the day – looking out for the elderly……

Jasper

You may remember our beloved poster boy Jasper, passed away peacefully on the 23rd of May last year and that he did in fact become B12 deficient toward the end of his life.

Remember, for us humans, there is no clinical evidence for 4 injections a year, your GP may not be aware of this.

Jasper was given B12 injections by the vet without any fuss at all because he fully understood how B12 deficiency can effect animals.

His lovely image will continue to help us to raise awareness of B12 deficiency.

Paul

On the same day last year I attended the funeral for our case study, Paul. Paul, like Jasper, couldn’t remember where he lived. His wife Evelyn was distressed seeing the early stages of his failing memory and odd behaviour. Paul wore a beard but bought countless electric shavers and insisted these stayed plugged in and fully charged at all times despite never being used. Paul did not drink wine but insisted on buying case loads and emptying the fridge of all food in order that the wine they didn’t drink, could be kept cold. He started taking their poor old dog on mammoth walks, wandering far from home and being missing for hours.

There were many distressing situations surrounding Paul’s decline and, knowing that Paul had been on Metformin for his diabetes (a drug known to inhibit absorption of B12) for years and learning that B12 deficiency was the likely culprit for his confusion and related symptoms, Evelyn tried to alert the GP to the fact that Paul needed injections for his severe B12 deficiency. Unfortunately, the GP insisted Paul was being adequately treated with 50mcg oral cyanocobalamin tablets and he was given an Alzheimer’s diagnosis.

Paul’s decline continued as Evelyn was told in no uncertain terms not to bring any more information about B12 into the practice. Eventually Paul was found a place in a nursing home. Over time Paul became non verbal, aggressive and malnourished. Paul never had the chance for his nerves to recover, his doctor refused to look at the solid information offered and so did the nurses involved in his care. Evelyn was told repeatedly that the doctor ‘knows what he’s doing‘. She tried many times to access the treatment Paul needed but it was futile.

Evelyn and Paul in the 60’s

 

Evelyn

Earlier this year Evelyn passed away. She too had many B12 deficiency symptoms, she had been on thyroid medication for years and as you may be aware the two conditions often co-exist.

Evelyn eventually told me her thyroid medication had been stopped, she had been told that she no longer needed it. Bizarre?

By this point in her life, she hadn’t the strength or the inclination to challenge her GP, obviously it hadn’t worked out too well before. She didn’t want anyone else to either – until sadly it was far too late.

It is quite common for patients themselves not to want to challenge any health professional and to see family ‘help’ as interference. They might worry how any confrontation could lead to a negative impact on their care and don’t want to upset their doctor.

If you have elderly loved ones please try and advocate for them even if they say they ‘can’t be bothered‘ or ‘what’s the point?’ They will thank you for caring.

No one should be afraid of upsetting their GP if they are simply trying to access correct treatment by offering relevant information or indeed asking for information. There are advocacy agencies who can help, or find someone in your family who can be an effective spokesperson.

If any GP is making decisions which are odd, stopping essential medicine without any kind of explanation please talk to someone who can help, get a second opinion – you are important, your loved one is important and we all deserve good, compassionate care.

RIP Evelyn, Paul and Jasper xxx