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

B12 deficiency can strike at any age, it is not confined to women over 60

 

b12-child-port

Signs & symptoms in infants and children
(List supplied by Sally M Pacholok R.N & Dr Jeffrey Stuart co authors of ‘What’s wrong with my child?’

• Developmental delay or regression
• Apathy – Irritability
• Hypotonia (decreased muscle tone)
• Weakness
• Tremor
• Involuntary movements
• Seizures (fits)
• Ataxia (Neurological disorder affecting balance, coordination and speech)
• Anorexia and other eating disorders
• Failure to thrive
• Poor weight gain
• Poor head growth
• Poor socialisation
• Poor motor skills
• Language delay
• Speech problems
• Lower IQ – Mental retardation
• Anaemia
• Macrocytosis (large red blood cells) Note – need not be present!

 

For more information on ‘Red Flags‘ in children please visit

www.b12deficiency.info/children-and-b12/

 

b12-child-land

 

Please see our posters page to share, download and print these posters.

Raising awareness ; http://www.b12deficiency.info/how-you-can-help/

Best wishes, Tracey

The Ignorance of Vitamin B12 Deficiency in Children

B12 is tragically undiagnosed and misdiagnosed in children, for many doctors testing for this deficiency is not even on their radar. In the rare cases when it is tested, there’s every likelihood it won’t be diagnosed due to the dangerously low lab reference ranges in the UK – as ridiculously low as 110ng/L at East Lancashire NHS Trust.

If a child is vegetarian or vegan and is not being given a supplement for B12 or was breast fed by a vegetarian or vegan mother who was not advised by their clinician’s to supplement B12, the risk of this deficiency is much higher.

In children who are heavily symptomatic and their deficiency it is not diet related, they may have B12 serum levels which are within range or even look like ‘healthy levels’.  It would be pertinent to carry out further tests such as MMA, and Homocysteine tests. Sadly the B12 serum test is flawed but this information is taking it’s time to filter through to clinicians.

If all symptomatic children with a B12 level below 500ng/L were treated without question and worried parents pleas for help listened to, this would go some way towards halting the untold suffering that families cope with every day. Tragicaly though, some of these children leave their doctors surgery with drugs to treat misdiagnoses of autism or ADHD. These drugs may or may not modify their symptoms, but the fact remains, deterioration caused by the lack of B12 will continue without essential injections.

A therapeutic trial of B12 injections would be extremely valuable for ‘within range’ symptomatic children. These should be carried out with continuous every other day injections in the presence of neurological symptoms. http://cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenariorecommendation:4

If a family has a high prevalence of diagnosed Pernicious Anaemia then it would be entirely sensible to screen children in these families. In adults this deficiency, if identified early enough, can be treated effectively and simply, reversing all symptoms. In children the story can be very different, the nervous system is still developing and if this vital nutrient is lacking then the damage may be irreversible.

All health professionals need to understand that this deficiency does not just affect women over 60. Terrified parents who know that their children are suffering from the same serious symptoms that they themselves, experience should be listened heard.

Signs & symptoms in infants and children

• Developmental delay or regression.

• Apathy – Irritability.

• Hypotonia (decreased muscle tone).

• Weakness.

• Tremor.

• Involuntary movements.

• Seizures (fits).

Ataxia (Neurological disorder affecting balance, coordination and speech).

• Anorexia and other eating disorders.

• Failure to thrive.

• Poor weight gain.

• Poor head growth.

• Poor socialisation.

• Poor motor skills.

• Language delay.

• Speech problems.

• Lower IQ – Mental retardation.

• Anaemia.

• Macrocytosis (large red blood cells) Note – need not be present!

Red flags of B12 deficiency in infants, children and Teenagers

If your child exhibits any of the following signs or symptoms, insist that your doctor tests for B12 deficiency.

• Movement problems, including difficulty in walking or writing.

• Mental changes – irritability, altered mood, poor memory, “flat” emotional tone, autistic-like withdrawal.

• Vision problems/abnormalities.

• Slowed weight and height gain.

• Leg pains or other abnormal sensations.

• Fatigue.

• Loss of appetite.

• An abnormally small head circumference in infants or toddlers.

• Apathy,lethargy, or irritability.

• Involuntary movements, such as arm waving in infants or toddlers.

• Tics.

• Grey hairs / premature greying.

• Areas of hypo pigmented skin in a Caucasian child and/or vitiligo, or areas of hyper pigmented skin in a black or Asian child.

• A rooting reflex after eight months of age (this reflex is usually absent after six months of age.

• A history of any surgery (including dental surgeries) involving nitrous oxide. This anaesthetic agent is often administered during dental work or surgeries such as insertion of ear tubes in children with chronic ear infections, can inactivate the body’s stores of B12 and cause severe neurological damage.

• Failure to thrive (poor appetite, poor growth and/or weight gain, general poor health).

• Chronic constipation.

• A diagnosis of developmental delay, autism, cerebral palsy, mental retardation, or other neurological disorder.

• Severe food allergies or sensitivities.

• A diagnosis of coeliac disease or gluten enteropathy.

• A thyroid disorder or other autoimmune disorder.

• A history of stroke or a diagnosis of arteriosclerosis.

• A diagnosis of any psychiatric or behavioural disorder including ADHD.

• A diagnosis of Downs Syndrome.

List Information provided with kind permission of Sally M. Pacholok R.N. & Dr. Jeffrey J. Stuart.

 

Best wishes, Tracey

http://www.b12deficiency.info/children-and-b12.html

Raising awareness;

http://www.b12deficiency.info/how-you-can-help/