UK Girl Dies After Doctors Fail to Diagnose Addison’s Disease

A “VIVACIOUS and lively girl” died after her rare medical disorder went undiagnosed by doctors.

Clare Cooper died aged 24 in February 2013 from Addison’s disease, a rare disorder of the adrenal glands affecting the production of the hormones cortisol and aldosterone.

An inquest into her death heard how the condition – which affects around 8,400 people in the UK – went undiagnosed despite the fact she visited two GPs, an eating disorder clinic and East Surrey Hospital over the course of more than a year when she began to lose weight and found herself lethargic and unable to eat.

On one occasion, in November 2012, the South Nutfield resident fainted while on a night out and went to visit her doctor the next morning.

On another, in September of the same year, she visited East Surrey Hospital with a very fast heart rate.

The inquest at Woking Coroner’s Court on Friday heard how doctors at Woodlands Surgery, in Woodlands Road, Redhill, missed “red flags” including Clare’s complaints of unexplained weight loss throughout 2012 and two blood tests showing she had a sodium level of 126 milliequivalents per litre – compared to a usual reading of between 135 and 145.

But rather than searching for an “organic” – or physical – cause, the inquest heard doctors referred Clare to an eating disorder clinic to test for a psychological cause.

Coroner Dr Karen Henderson concluded: “Clare exhibited significant symptoms and red flags to warrant further investigation and, in all likelihood, the investigation would have led to her diagnosis.”

She added: “Clare died as a consequence of Addison’s disease and opportunities were lost for its diagnosis and treatment, which could have affected the outcome.”

Clare’s mother Carol Cooper told the inquest that when Clare first began to complain of health problems in 2011 it came as a surprise to members of the family because she had always been a healthy and active girl.

She said: “We, as a family, used to say ‘gosh, has Clare got the sniffles again?'”

But the family did not know Clare’s inability to shake a chest infection, or her subsequent unexplained weight loss were, in fact, signs of the potentially fatal Addison’s disease.

As time progressed, and into 2012, the tiredness and illness became more severe and she visited GPs at Woodlands Surgery on five occasions in 2012 complaining of weight loss, tiredness and anxiety.

Mrs Cooper told the inquest: “She was tired and under the weather, she would go to bed early and she didn’t have the energy of other people her age.”

Clare was referred to an eating disorder clinic late in December 2012 and the inquest heard how Clare had “set great hope” in the clinic.

When Clare collapsed suddenly at home on February 3 last year, she was rushed to East Surrey Hospital where she died early the next morning.

A post-mortem examination first gave the cause of death as sudden adult death syndrome, but this was reviewed after an expert in Addison’s disease, Professor John Wass, was asked to look into the case.

Concluding the inquest, Dr Henderson changed the official cause of death to an Addisonian Crisis – a potentially fatal condition caused by an acute lack of cortisol – with undiagnosed Addison’s disease as a secondary cause.

Her mother Carol told the inquest: “Clare was a vivacious and lively, beautiful girl.

“She always had an engaging smile and she was very good at engaging people and connecting with people.”

Woodlands Surgery did not respond to the Mirror’s request for a comment before we went to press.

Read more here.

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Global Genes Comments

  1. Over the past 10 years I passed out 2 times. Often I just wouldn’t feel right at night time. Doctors kept thinking it was heart problems. Finally last year they diagnosed me with Primary Addison’s after several times laying on the floor for hours too week to move, light headed in the shower and when standing, weight loss and low blood sodium. I was lucky that I went to a new doctor who knew which tests to run. I feel for everyone’s loss as it’s frustrating going to a doctor who has no idea what they are looking at.

  2. barry waterfield says:

    I was in my teens when I started the downward slide into what was to be identified as Addisons Disease, but, in a rather different scenario to the examples given here, the doctor did suspect it , it was my father who denied it thinking I was ‘avoiding school’. Eventually I remember ringing home and saying I was on my way. I could barely stand or walk , but somehow I made that last journey. I remember little else until I was in hospital, but I have never forgotten that I have my father to thank for three weeks of decline vomiting, weight loss and lack of energy before something was done. Apparently I would not have lasted the night at home, it was that close a call for me. It’s the rareness of this disease that leads to so many mistaken diagnosis and , subsequent deaths. That and the stubborn nature of those who think they know best.I will admit, I haven’t found Addisons an easy condition to live with but at least I’m stii here.

  3. I too had all the symptoms of the disease after collapsing and ending up in A&E including low sodium levels as my kidneys could not function properly but although i was told I had a disease he did not know what it was but said its not life threatening and sent me home. No further tests from him, three months later after continual visits to my doctor and being told there was nothing wrong with me I collapsed again and cried in the surgery telling the doctor i was ill. She then checked out my symptoms and finally I got a diagnosis after she spoke to an endocrinologist I was near death collapsing not being able to stand and in adrenal crisis. Had I not pushed myself for answers I would not be here. I was told by the endocrinologist my symptoms were all there as I was in a crisis. We do rely and trust that we are getting the best treatment but this is not always true.

  4. Will Powell says:

    Condolences to Claire’s parents and family after yet another needless death from this treatable disease.
    Our 10 year old son died from undignosed Addison’s disease in April 1990. Robbie suffered an Addisonian Crisis 4 months before his death. Although this potentially fatal disease was suspected and the ACTH test ordered we were not informed and the test wasn’t done. However our GP Practice was informed of the suspicion and instructed to get the child immediately back to hospital if he again became unwell.
    Between the 2nd and 17th April 1990 Robbie was seen by 5 different GPs on 7 separate occasions and was not referred back to hospital until it was too late to save his life. Robbie was actualy seen by 3 diferent GPs 4 times in the last 3 days of his life when he was so weak and dehydrated he couldn’t sand. Our beautiful son died a torturous death.
    Our grief was exacerbated when he found out, after Robbie’s death, that Addison’s disease had been suspected and the test ordered but not done.
    26 years on we are still fighting for the truth. :”(

    • barry waterfield says:

      I seem to remember a case like this where the boy died through medical neglect. Sadly he has not been the only one. I feel for you when you say
      ”Our beautiful son died a torturous death.” It is torturous but , as you say , it was avoidable , Addisons is treatable . RIP Robbie, it’s all over now sleep well, God Bless

  5. My son also died from Addison’s Disease–we were completely blindsided–he was only 27 years old. He had a great life before last the 2 years of his life was spent going to his GP with lower back pain and loss of weight—he was sent to physical therapy for his pain. No other tests were done. He died suddenly while living with room mates. They thought he had the flu—he died suddenly——we are all left to deal with the pain of such a sudden loss—why couldn’t the doctor if sent him for more tests???? I don’t understand this… Left totally heartbroken–it’s been 2 years now… Not getting any better…it sucks…

  6. James, ask for the cortisol early morning test, or pay for it privately. I was an undiagnosed addisons, doctors told me it was a migraines, another doctor said it was stress, suffered a 8 week extremely painful addisons crisis , 2 A&E trips, my vet picked up on a black freckle on my lip and said you have addisons, told my doctor who said no you’re too chubby for addisons, diagnosed pat 3rd A&E trip, doctor said “you were
    lucky, you were so close to death” meanwhile lost my job for so much time off, nearly my house, living off a foodbank till sick benefit paid, late diagnosis totally wrecked my life. Everyday I think about being in A&E with the doctor calmy telling me another 40 mins we could not have revived you. All that because not a single doctor considered adrenal failure. I feel for this family, their daughter would have died in utter agony.

  7. This is what i am going through right now too with doctors – how much weight does a person have to lose, how many times for them to collapse, how low does blood pressure have to go for them to realise there’s an organic reason for every symptoms.
    Doctor’s think they are god’s and us mere mortals will do anything to have the ‘pleasure’ of their ‘attention’ by faking disease, while we suffer with their incompetence and die in the meantime.
    Get over yourself doctors…you’ll be chronically ill one day and ONLY THEN you’ll understand the misery. 🙂
    I hope everyone tell you to pull your socks up and stop moaning, or worse still “It’s all in your head, you’re fine”.
    The lawsuits are and SHOULD pile up against such a high degree of negligence that COSTS LIVES.

  8. Gp’s are robot’s. controlled by big money, pharma & red tape

  9. jennifer addy says:

    My son is now 17 and I am lucky to have him with me. He also went undiagnosed for years. Lucky for us I met the right endo at the right time. My son’s sodium level was 106 and I was told flippantly to keep him hydrated. I feel for this family. This should not happen in this day and age.

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