Hi my name is Keeley,
I am 18 years old and have a life threatening condition for called Adrenal Insufficiency. I first started having problems in school, with my behaviour aged 11 and started to behave badly, but didn’t understand why I couldn’t control my behaviour, and started to hate myself for this.
I then got referred to CAMHS (Children and Adolescent Mental Health Service) and SENCO (Special Education Needs Coordinator) which they then, after some investigations, diagnosed me with ADHD, Dyspraxia and Irlem’s Syndrome which I get help for. But in the meantime, I was getting excluded from school for various problems, and eventually got permanently excluded in November 2009, and went to a behavioural unit at Fazakerly High School, for 2 weeks in December 2009 and did not return to full time education until September 2010 at Mode Training where I studied Hairdressing.
I started suffering with various mental health problems, such as mood problems, depression and eating disorder issues, and received treatment for them at a mental health unit in Chester called Pine Lodge/Maple Ward, from March 2011 till September 2012. I continued to attend as a day case patient in Chester from September 2012 till April 2013 for DBT Skills training, and started to volunteer at Daisy UK a disability led charity, that supports young disabled and non-disabled reach their true full potential.
After this I started at Liverpool Community College in September 2012, but had to leave December 2012, due to health problems getting worse, but continued at Daisy UK until June 2013, but it got to the point where I was too unwell, and had to undergo 2 operations to remove infection and to remove the adhesions that the infection left behind, but still I continued to faint, for which no one could understand why.
Then in November 2013, I sadly lost my Auntie with whom I was very close to, and this caused a lot of stress, and so I started to research on the internet about anything that could explain the way that I felt as I thought “I was going crazy, and just needed to push myself harder”.
The symptoms I then started to experience where:
• Muscle pain
• Joint stiffness
• Cold hands and feet
• Hair and teeth getting weak
• Blurry vision
• Diagnosed with a sleep disorder called Delayed Sleep Phase Syndrome
• Emotional Dysregulation
• Increased thirst
• Salt craving i.e. I would drink vinegar for the sodium
• Loss of appetite
• Weight loss
• Night sweats
• Permanent infections
• Low blood pressure
• Abdominal pain
It was then, when I came across a condition called, Adrenal Insufficiency on the online, and briefly mentioned this to my mum, and explained that if I ever fell acutely ill, that she should mention to the Doctor and tell them I seem to be suffering from symptoms of Adrenal Insufficiency.
I went to visit my local GP, and I basically had to beg for a referral to the Endocrine consultant Aintree because when I asked the Doctor he replied sarcastically “And what do you want me to do?
It was then on the eve of 31st December 2013, I felt unwell and told my mum I had palpations and could not stand up without blacking out. She rang NHS direct for which they then, sent an ambulance out and rushed me straight to Aintree Hospital. When I arrived there in Resus, I completely lost consciousness and had a heart rate of 197-bpm normal range (70-80bpm), blood pressure of 69/26 normal range (120/60) and a temperature of 35.2 normal range of (36.5-37.0).
My mum told the A&E Doctor in charge of my care, about the referral to Endocrine, and that it was to investigate whether or not I had Adrenal Insufficiency, but luckily the Doctor who she spoke to was a Endocrine specialist, and had knowledge of this condition and immediately started treatment without delay, whilst awaiting blood results, as he could tell by looking at me that I had the condition.
He then gave me injections of I.V hydrocortisone, put I.V fluids as well as a banana bag full of essential vitamins and electrolytes and put me on beta blockers for my heart, and within an hour of this I was able to sit up and talk, and felt like a completely different person, because I had never felt so good in my life.
There are 2 types of adrenal Insufficiency – Primary is where the Adrenal gland has stopped producing cortisol, which is the lifesaving hormone I am missing, and Secondary Adrenal Insufficiency which is caused by failure of the Pituitary gland (a gland located at the base of the brain) to produce a hormone called ACTH (Adrenocorticotropic hormone) which is the brains “messenger” that stimulates and tells the Adrenal glands to produce cortisol.
I have Secondary Adrenal Insufficiency, but both types of Adrenal Insufficiency have the same treatment only that Secondary is even rarer than primary and it is estimated only every 1-100,000 people suffer from it.
I currently take daily steroid tablets for this, called Hydrocortisone and have to increase my dose when unwell, or if there is an accident and use my emergency injection if I get seriously unwell, which I carry with me and then get taken to the nearest hospital immediately.
I can control these conditions to some extent, but I have also developed various deficiency’s, including vitamin B12 deficiency (Pernicious anaemia) which I have 3 monthly injections for, but in the future I hope to go on and complete my Adult Nursing degree 🙂
Thank you for taking the time to write this article Keeley.
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