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Mistaken media views about Addison's


ADSHG

  • In July 2015, The Times provoked controversy about Addison's and steroid-dependency when it published an advice column offering suggested guidance for a steroid dependent pituitary patient. The ADSHG had serious concerns about the advice this column gave, in particular its assertion that the gentleman in question should reduce his steroid dose and the suggestion of a link between Addison’s and mental health problems. Below, we republish the letter to the Editor, written in response by the Chair of the ADSHG's Clinical Advisory Panel, Prof John Wass, and an in-depth commentary from the ADSHG's newsletter to members.

Letter to the Editor of The Times

 

Sir, In her reply to a reader whose husband has secondary adrenal insufficiency (Addison’s disease) and who also suffers from depression, Professor Tanya Byron points out that physicians, including psychiatrists and endocrinologists, are not aware of a correlation between the two. She suggests that the reader and her husband seek psychological support and advice from the husband’s treatment team about the possibility of reducing his dose of steroids. It should be noted that if the adrenals are not working life is literally dependent on steroids and they cannot be reduced without potentially severe consequences. This is an uncommon condition but, if unwell for example with vomiting, an urgent increase in the dose is necessary to avoid a drastic fall in blood pressure. All patients on steroids should carry an emergency injection with them at all times for these eventualities.
Professor John Wass, Chair of ADSHG Clinical Advisory Panel

 

 


 

 

Media comments on adrenal insufficiency and mental health: the ADSHG viewpoint

 

Article taken from September 2015 issue of the ADSHG newsletter

 

It was generous of Tanya Byron to mention the Addison’s Disease Self-Help Group in her recent column about a steroid-dependent pituitary patient (Ask Tanya Byron: I’ve been waiting for the man I married to reappear, The Times, 6 July 2015).

 

Regrettably, we must disassociate our charity from the conclusions she drew in this column, in which she made unsubstantiated and misleading claims about a supposed correlation between mental health problems and Addison’s disease.

 

It is possible that Professor Byron confused the ‘steroid psychosis’ experienced by a small minority of patients taking very high-dose synthetic steroids (used to treat conditions such as brain tumours, acute asthma or lupus) with the wholly beneficial results of taking moderate replacement doses of the hormone, cortisol, marketed as hydrocortisone. It is misleading and dangerous for Professor Byron to suggest that ‘steroid psychosis’ could happen to patients who need replacement hydrocortisone to keep them alive when adult replacement steroid doses for adrenal failure are usually five to eight times weaker than those used to treat other conditions.

 

Steroids are a widely used, beneficial therapy; they are life-saving for some patients and ease pain and suffering for many others. Unlike many other medications, the risks of overdose are comparatively mild and develop in the longer term rather than immediately. But for steroid-dependent patients, under-medication can rapidly prove fatal. This is known as acute adrenal crisis, when death may occur within a few hours.1 Steroid-deprivation – where the adrenal glands cannot produce cortisol – can also produce psychosis in a minority of patients. Thus, by suggesting that the patient in her case study should reduce his daily steroid medication, Professor Byron could potentially expose this patient to the risk of adrenal crisis with accompanying psychosis.

 

Modern studies do not support Professor Byron’s assertions about either pre- or post-diagnosis mental health problems in Addison’s. A 2013 study of all Addison’s patients in Sweden (n=1305) found that anti-depressant medications were prescribed at rates consistent with the national average, while drugs for sleeping difficulties and anxiety were prescribed at marginally elevated rates.2 The authors note that ‘detection bias’ is a likely factor because steroid-dependent patients receive annual health check-ups to monitor for the development of additional health conditions. To summarise, across the entire 9.6 million Swedish population, mental health problems treated with prescription drugs occur at a similar rate among those with diagnosed Addison’s versus those with healthy adrenals. The 2003 international Addison’s survey in 2003 (n=604) found that 54% of people recalled difficulty concentrating as part of their pre-diagnosis illness, but only 3% recalled an altered mental state or anxiety/depression. Over two-thirds had been told their symptoms were caused by another condition and 33% had been told by a medical professional that their symptoms were ‘all psychological’, before being correctly diagnosed.3

 

Even today, young people with failing adrenals can be incorrectly told they have anorexia or a similar psychiatric problem.4 Occasionally – and tragically – young women wrongly labelled with a psychiatric condition still die from undiagnosed Addison’s.5 On average, 30 people die every year in England and Wales from undiagnosed or undertreated adrenal failure.6 Almost all of these deaths could have been prevented through better or faster treatment with life-saving steroid medication. Thirty deaths represents almost 4% of the approximately 900 new adrenal insufficiency diagnoses each year.7,8 As a proportion of the total patient population, the number of adrenal crisis deaths is concerningly high. Sudden death from insufficient steroid medication is a real threat that every steroid dependent patient must make their own terms with. The emotional resilience required to manage this life-long medication-dependency is considerable.

 

Professor Byron claimed her personal enquiries revealed endocrinologists are “not always aware of the correlation between Addison’s and the related mental health disorders.” Yet a search of conference abstracts from the Society for Endocrinology online database identifies an extensive list of case reports about the psychological disturbances that can develop in a variety of undiagnosed endocrine conditions, including adrenal disorders.9 As a rule, neuropsychiatric symptoms are the exception rather than the norm in modern clinical practice, tend to arise in more severely advanced cases, and are more likely to occur in conditions of hormone excess rather than hormone deficiency.

 

Thus, while endocrinologists would certainly be surprised by Professor Byron’s claim that 64 – 84% of Addison’s patients will have mental health problems, this does not mean they are unfamiliar with the neuropsychiatric effects of various hormone imbalances and their associated mineral or electrolyte disturbances, nor with the effects of the high-dose prednisolone regularly used to treat pituitary tumours. Prof Byron’s quoted statistics came from small studies of pre-diagnosis symptoms in the 1930s and 1940s; they are misleadingly out of date.10

 

So, for the patient who has survived a lengthy pre-diagnosis illness with dangerously low cortisol levels, what does it feel like to have their health restored with the miracle of modern steroid drugs? Here is how one newly diagnosed ADSHG member described it:
 

“I was high on hydrocortisone – and it wasn’t just me that thought so. I felt ‘fizzy’ and kept waking up in the middle of the night with things on my mind, which never happened before I started treatment. I wasn’t emotional but just like an overcharged Duracell bunny. My boss said to me, “What’s up with you? Are you on drugs?” He meant that in a jokey way as he knew I was on medication, so obviously the answer was, “Yes, actually I am.” Before diagnosis with a pituitary tumour, I used to get panic attacks due to having next to zero cortisol levels, and that imbalance affecting various other important levels. It took a couple of weeks for me to get used to suddenly having cortisol back in my veins after years of being so low, but it did calm down. After a while the scary thing was how normal it felt to be this much more active-brained person; it made me scared to think how brain-dead I must have been before.”
Carl

 

 


References
1 Wass & Arlt 2012 How to avoid precipitating an adrenal crisis, British Medical Journal 345 e6333
2 Björnsdottir et al 2013 Drug prescription patterns in patients With Addison's disease: a Swedish population-based cohort study, Journal of Clinical Endocrinology & Metabolism 98 2009-2018
3 White et al 2006 Autoimmune hypoadrenalism: symptoms at diagnosis, Endocrine Abstracts 11 P208
4 ADSHG website: Tracy’s story and Jackie’s story
5 Clare Cooper.co.uk. Her death
6 Office of National Statistics, Deaths registered in England and Wales, table 5.4, 2006–13
7 Turner H & Wass J 2009 Oxford Textbook of Endocrinology ch. 48 Adrenal insufficiency.
8 Chen et al 2013 Epidemiology of adrenal insufficiency: A nationwide study of hospitalizations in Taiwan from 1996 to 2008, Journal of Chinese Medical Association 76 140–5
9 Endocrine Abstracts
10 Anglin et al 2006 The neuropsychiatric profile of Addison’s disease: revisiting a forgotten phenomenon Journal of Neuropsychiatry and Clinical Neurosciences 18 450–9



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The Addison’s Disease Self-Help Group is the support group for people with Addison’s disease or adrenal insufficiency and their families in the UK and Ireland.The group was formed in 1984 and is a UK registered charity no. 1179825.

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