Why my tan was the only sign I had a little-known deadly condition that affects thousands

Every time Billie Worsey nips up the stairs to fetch something she utters a silent ‘thank you’.

Until recently, she was unable do to this alone, needing her husband to carry her.

In fact for most of her life Billie suffered with an undiagnosed condition that made her weak, frail and unable to put on weight – and even led her to develop a strange ‘tan’ despite not having been in the sun.

By the time doctors found the cause, at the age of 31, consultants told her she would die without prompt treatment.

Billie, now 36, has Addison’s disease – a condition where the adrenal glands do not produce enough crucial steroid hormones, leading to weak muscles, reduced heart rate, extreme tiredness and fainting.

At the same time it also overproduces a hormone that drives skin pigmentation, causing a ‘tan’ – Addison’s was responsible for the famously tanned appearance of former US President John F Kennedy, who also suffered from it.

Affecting one in 10,000 people in the UK of all ages, and both sexes equally, it can start anytime and proves fatal if untreated.

Billie, a learning support assistant from Mannings Heath, West Sussex, recalls constantly feeling ill as a young child: ‘I was always frail, always thin and never able to put on weight.

‘I just thought that was the way I was.’

But things got worse by the time she started working in her 20s – ‘I had no energy, had severe anxiety and started finding it hard just getting upstairs. This affected my work too.’

She married Sam in 2014 when she was 26, but within four years her husband, a manager for the local council, was having to help her climb the stairs.

‘I just felt really unwell,’ she says.

Billie went back and forth to the doctors in earnest from 2016 and was tested for everything from anaemiato cancer and had stool samples taken for suspected bowel problems. ‘But everything came back clear,’ she says.

During this time the couple had a son, now nine, and daughter, now five, but after her pregnancies Billie was barely able to lift her children.

By the time her daughter was eight months old, Billie was permanently exhausted, regularly suffering from sickness, extremely thin and unable to gain weight.

‘I had to really brace myself to get through each day,’ she recalls.

But by 2020, when her daughter was one, she also began noticing another strange symptom – her skin was darkening all over, ‘a bit like a suntan’.

‘But the strange thing was I had not been in the sun or on holiday,’ says Billie. ‘It wasn’t noticeable to anyone else, but I noticed it.’

So exhausted she could barely stand, Billie once again visited her GP – only to be told it was ‘anxiety’ and to go home.

‘Something in me snapped,’ she recalls. ‘I had been fobbed off for years, was unable to lift my baby and my husband had to virtually carry me upstairs. I demanded more tests.’

After complaining to her GP surgery, she was offered blood tests, which confirmed she had dangerously low salt levels and she was told to go straight to hospital that day.

There, a junior endocrinologist happened to overhear her conversation with a doctor and interrupted, asking: ‘Have you checked her cortisol?’

Subsequent blood tests showed she had low levels of the stress hormone, cortisol. ‘Suddenly I had five consultants around my bed and one said: “We think it is Addison’s disease”.’

Also known as primary adrenal insufficiency, this is a rare condition – with only an estimated 300 to 350 new cases diagnosed every year – where the adrenal glands (that sit above your kidneys) do not produce enough essential steroid hormones: cortisol and aldosterone, explains John Wass, a professor of endocrinology at Oxford University and Chair of the Clinical Advisory Panel for the Addison’s Disease Self-Help Group.

These hormones play a critical role in the body’s response to stress and influence blood glucose levels, blood pressure and fluid balance.

But the condition can be hard for GPs to diagnose as symptoms, such as overwhelming exhaustion, weight loss, dizziness and low blood pressure, can initially be vague.

Other symptoms include deepening skin pigmentation, stomach pain and salt cravings.

Low sodium (salt), alongside high potassium, is a sign because as well as secreting cortisol, healthy adrenal glands make a steroid hormone, aldosterone, which acts on your kidneys to tell them to retain salt.

However, in Addison’s disease, damage to the adrenal gland means there is insufficient or no aldosterone. As aldosterone’s central role is to regulate blood pressure, sodium and potassium levels, this in turn leads to symptoms including light-headedness, dizziness on standing up, low blood pressure, constantly feeling weak and cramps.

Lack of aldosterone can be treated by taking fludrocortisone tablets to replace the missing hormone.

But if untreated, Addison’s is ‘always fatal’, warns Professor Wass.

Patients need lifelong treatment with replacement steroid hormones: medication is usually taken several times daily at carefully timed intervals.

Individuals must also know how to administer an emergency hydrocortisone injection to prevent a potentially fatal adrenal crisis with dangerously low levels of hormones.

They must also carry an NHS Steroid Emergency card to alert other health professionals to administer emergency treatment in the case of an adrenal crisis.

‘Many healthcare professionals are unaware of the time-critical treatment required,’ says Professor Wass.

Certainly none of the GPs Billie saw had ever suspected it and Billie herself had never heard of the condition, which was confirmed by further autoimmune tests.

Consultants told Billie her condition was extremely dangerous because of her low salt levels.

They were astonished she’d survived two pregnancies and childbirth, given her condition.

‘In short, it was a miracle I’d survived this long – and they told me I was dying.’

She had survived due to the fact she happened to use a steroid inhaler for asthma (diagnosed 15 years earlier) and constant use had given her just enough steroid support over the years to keep her going.

That same day she was immediately put on a drip and given cortisol.

Although profoundly shocked, the couple was also relieved that ‘at last someone was taking me seriously’, says Billie.

As for the strange ‘tanning’ effect Billie had noticed, Professor Wass says that this is in fact a classic symptom of Addison’s disease.

Due to the lack of cortisol, the pituitary gland in the brain releases more of another hormone (called adrenocorticotropic hormone) in an attempt to stimulate the adrenal glands to produce cortisol.

When ACTH levels rise, MSH (melanocyte-stimulating hormone) production also increases – which makes skin more pigmented.

Professor Wass says: ‘MSH stimulates melanocytes, the cells in the skin responsible for producing melanin, which gives the skin its pigment. ‘This leads to the characteristic darkening or hyperpigmentation of the skin seen in Addison’s disease.’

He adds that the effect can be hard to detect in people with darker skin tones – ‘therefore, it is vital to check the inside of the mouth and gums which can darken’.

When Billie was allowed home a few days later, she was astonished to find she could ‘bound upstairs’ with no effort or help.

‘It was as if a switch had been turned on,’ she recalls. ‘I could walk, I could run, I didn’t feel tired or anxious and felt alive again.’

Billie must now take medication for life – in the form of daily steroid tablets to replace the hormones her adrenal glands can no longer make.

‘With appropriate treatment, most people with Addison’s disease can live relatively normal lives,’ says Professor Wass.

Most people take their medication three times a day at five to six hourly intervals – although the amount and type of medication depends upon the patient’s individual needs and is worked out in consultation with their endocrinologist, he adds.

A patient may also need urgent life-saving steroid injections (hydrocortisone) if cortisol levels become dangerously low – for instance, if they miss a dose of their medication or suffer flu, physical injury or bereavement – and go into adrenal crisis, says Professor Wass.

This can also be true if the person has a gastric bug, for instance, and is vomiting and unable to take their normal steroid tablets. Here, the norovirus, gastroenteritis or other types of food poisoning bugs can become fatal due to adrenal crisis.

‘Injected hydrocortisone is life-saving,’ says Professor Wass, adding that it should be immediately administered and 999 should be called if a person displays symptoms of adrenal crisis.

These include side pain, extreme weakness, confusion, nausea and stomach cramps, as well as dizziness, shaking and shivering – and is why patients are recommended to carry an emergency hydrocortisone injection kit.

Billie takes two types of medication every day in tablet form – fludrocortisone for her salt levels, and hydrocortisone for cortisol.

She also carries a vial of liquid hydrocortisone to be injected in case of an adrenal crisis – she has had to use it twice so far.

But her diagnosis has given her a whole new life.

‘As long as I am looking after myself and taking my medication, there’s nothing I cannot do,’ she says.

‘I play pickleball with my husband every week, I work full-time in a job I love and very soon I will be travelling to Skomer Island, Wales, to see the puffins. These things I could only dream of doing years ago,’ she says.

She adds: ‘I can’t believe how unwell I felt for pretty much all my life. I had no idea I was so ill I was dying.

‘I have to take medication but that’s a small price to pay for a lifetime with my family.’