‘What is it?’ That was the first question 35-year-old Milly asked when I told her she had Graves’ disease.
I wasn’t surprised she hadn’t heard of it – in my experience, even some GPs have little understanding of the condition, despite it affecting hundreds of thousands of women across the UK.
For months, Milly – not her real name – had been told her racing heart and fatigue were down to the stress of her busy job in PR.
The first GP she saw recommended therapy and long walks.
Unsurprisingly, neither helped, and her symptoms continued. Yet within minutes of her first appointment with me, I suspected Graves’. I referred her to an endocrinologist – a hormone specialist – and, after some tests, the diagnosis was confirmed.
This is not the first time I have seen a Graves’ patient bounced around the NHS like this, sadly. For patients such as Milly, it means their symptoms are often wrongly put down to anxiety, stress or the menopause.
Graves’ disease affects the thyroid, the butterfly-shaped gland at the front of the neck
For patients such as Milly, it means their symptoms are often wrongly put down to anxiety, stress or the menopause, writes Dr Ellie
I believe there could be countless women across the country stuck in the same position, receiving the wrong treatment for months, even years.
So what is this disease? And how can you spot the signs?
Graves’ disease affects the thyroid, the butterfly-shaped gland at the front of the neck.
It produces a hormone called thyroxine, which sets the speed of almost everything the body does – from heart rate and digestion to periods and fertility.
Too little, and everything slows. This is as an underactive thyroid. Too much, and everything races. This is an overactive thyroid.
An underactive thyroid, or hypothyroidism, is very common, so GPs spend far more time treating it. Symptoms include fatigue, feeling cold, weight gain, brain fog, low mood and dry skin. Treatment is fairly straightforward – tablets containing synthetic thyroxine.
An overactive thyroid is discussed much less.
Graves’ disease is its most common cause and occurs when the immune system mistakenly attacks the gland. It is five to ten times more common in women than men, and typically strikes those under 50.
Part of the reason we talk about it less is that it is genuinely rarer than an underactive thyroid. But I think there is more to it than that.
First, one of the most common symptoms is weight loss, which, unlike weight gain, most patients are – initially – not unhappy about.
Second, many of the other symptoms, such as nervousness, anxiety and heart palpitations, are easily mistaken for the strain of being a busy, stressed woman.
That is particularly concerning when you consider that millions in the UK live with anxiety or insomnia. I wonder how many of them have had their thyroid checked.
Other signs, such as hot flushes, insomnia and missed periods, are often dismissed as the start of the perimenopause. As a result, I have met many Graves’ patients who were put on hormone replacement therapy (HRT) to no avail.
One giveaway is the eyes. Graves’ can make them look bulging and staring, but this affects only about one in five patients.
This is exactly what happened to Star Wars actress Daisy Ridley. In 2024 she revealed she had been diagnosed after months of a racing heart, hot flushes, weight loss, exhaustion and shaking hands.
Actress Daisy Ridley was diagnosed with Graves’ disease in August 2024. Initially she thought that her symptoms – which included a racing heart and shaking hands – were a result of stress
At first, she assumed the symptoms were down to stress.
In theory, Graves’ patients should not have to wait this long for treatment. The NHS says doctors should consider an overactive thyroid in anyone with anxiety, insomnia and palpitations. Diagnosis starts with a blood test, and an ultrasound is sometimes needed to check for lumps on the thyroid called nodules, while treatment is typically a daily tablet called carbimazole.
Too often, however, GPs do not send patients with these symptoms for further tests. Instead, they are given medication such as antidepressants or HRT, which do not solve the problem.
Anyone who suspects Graves’ should keep a diary for a month or two to take to their GP, and ask to be tested for the condition.
Likewise, anyone being checked for atrial fibrillation – the most common heart rhythm problem and a cause of a racing heart – should make sure their thyroid has been tested, too.
Women in mid-life have become used to hearing that everything is down to hormones, stress or the menopause. Often it is.
But not every hot flush is the menopause, and not every racing heart is anxiety. If something feels wrong, ask for a simple blood test. It could change everything.
Your questions answered
Q: I’ve been on weight-loss jabs for two years but I want to come off them without putting it all back on. Can you help?
A: The honest truth is that coming off the jabs will lead to some weight gain, but there are steps patients can take to minimise this risk.
Drugs such as Mounjaro and Wegovy work by suppressing appetite, and users can expect to lose as much as a fifth of their weight within a year.
However, studies show most will put weight back on when they stop taking the injections and their appetite comes roaring back.
In fact, patients regain, on average, around two-thirds of their weight – or more.
Understandably, this can be incredibly distressing – not least because these drugs are not cheap.
Many private companies have now started selling expensive coaching and nutrition plans to limit this weight regain.
Speaking to a personal trainer or a professional diet expert will always be helpful, if you can afford it.
However, you do not necessarily need to splash the cash to avoid the dreaded weight regain after ditching the jabs. Instead, my advice is fairly simple.
First, research shows that you need to be on the drugs for at least 18 months to two years for the effect to have the best chance of lasting.
Most importantly, the jabs need to be combined with a good diet and regular exercise.
A good diet is one that includes plenty of fibre (found in pulses, legumes, vegetables and fruit) and protein (found in lean meats such as chicken and fish). It is low in sugar, processed foods and fatty meat, too.
Meanwhile, regular exercise might involve brisk walking, swimming or cycling.
However, all the research shows that the best exercise for maintaining weight loss is strength training, such as weight-lifting.
Crucially, the studies also show these good habits need to be adopted well in advance of quitting the jabs, not afterwards when the weight starts to creep back on.