Women’s fight for thyroid pills that cost just pennies
IT IS a common hormone condition that causes a raft of distressing symptoms for thousands of British women, from weight gain and crushing fatigue, to hair loss and migraines. Roughly one in five Britons are affected by an underactive thyroid, caused by problems with the butterfly-shaped gland in the neck which governs functions from digestion to heart rate and mood.
Treatment to combat the illness involves pills that cost just a few pence a day.
So when influential doctors’ magazine the British Medical Journal last month advised against prescribing the medication to a large group of patients there was, understandably, an outcry.
In the article, some GPs and researchers claimed one of the most commonly given drugs, levothyroxine, did little to improve their condition.
Now, the British Thyroid Association and the Society for Endocrinology, which represents experts in the field, have hit back, arguing that doctors should actually prescribe tablets to more patients.
Indeed, campaigners say accessing treatment is already a struggle for some, forcing them to resort to buying drugs online from risky, unregulated overseas pharmacies.
Dr Peter Taylor, a consultant endocrinologist and lecturer at Cardiff University, warned the new guidance could make matters worse. He says: ‘Patients could become even more sick because GPs will read this and say, “I’m not going to treat them.”’
Lyn Mynott, head of the charity Thyroid UK, agreed, adding: ‘We know that patients do well on medication, but the reality is many are unable to get treatment as it is. Some end up self-medicating, which has potentially dangerous consequences, or paying over the odds for treatment they are entitled to get on the NHS.’
Isobel Hotten knows this only too well. The computer expert, 60, from Guisborough, North Yorkshire, says she has paid thousands to see a private GP after NHS doctors refused to give her the drugs she needs. Her problems first began when she was 35. ‘My hair, even my eyebrows, started falling out,’ she says. ‘My weight went up from 10st to over 15st and I eventually lost my job in 2009 because I’d fall asleep at work. My NHS GP just said I was depressed,
and told me my weight was actually to blame for the way I felt.’
Only after the private GP carried out tests and prescribed drugs including levothyroxine, a synthetic version of a hormone produced by the thyroid, did her symptoms improve. Her weight stabilised at just under 9st, she stopped losing her hair, and she felt she was getting her life back.
In most cases, an underactive thyroid is caused by the immune system going rogue and attacking the healthy gland. This leads to low levels of key hormones it produces, which can wreak havoc throughout the body.
Medication, chronic stress, pregnancy and getting older can also be to blame for the condition.
It mainly affects women as the illness is thought to be linked to the female sex hormone oestrogen. To diagnose the condition, blood tests are used to check for levels of the hormones produced by the thyroid – and this, it seems, is where the problems begin. Patients with blood test results that clearly show an imbalance are typically prescribed medication. But this represents just a fraction of all sufferers. A far larger group have more ambiguous test results – but still suffer symptoms.
Some GPs take a ‘watch and wait’ approach, holding back on drug treatment until hormone levels clearly indicate a serious thyroid problem.
There is a worry that, without a definitive test result, they could be misdiagnosing patients.
But Lyn Mynott says this approach can leave some at risk of the condition worsening.
British Medical Journal experts argued for even stiffer criteria, and that levothyroxine treatment should only be given in extreme cases. But Dr Salman Razvi, an endocrinologist and lecturer at Newcastle University, claims the advice is flawed. He says the researchers looked mainly at patients over 65 who didn’t have symptoms in the first place.
‘There is good evidence younger people do benefit from levothyroxine,’ he says, adding that it was important not to focus on blood test levels but rather on ‘the human factors, such as the symptoms of the individual patient’.
This view is shared by Dr Taylor, who treats patients with an underactive thyroid at his NHS clinics. ‘It is wrong to deny them treatment,’ he says. Both doctors suggest patients who have an unclear hormone test result, but have symptoms, should be put on a threemonth trial of levothyroxine.
DR TAYLOR says: ‘Some GPs are reluctant to prescribe it as the drug can cause palpitations, and there is a very small risk it can trigger a stroke. If this is a concern then the patient should be referred to an endocrinologist.’
In a statement, one of the authors of the controversial British Medical Journal article told The Mail on Sunday: ‘This a complex issue. Guidance is not designed to mandate any course of action, but to help patients and clinicians have better conversations. There is good evidence that medication does not improve symptoms of these adults. However, the guidance also outlines that treatment may be appropriate in some circumstances, for example if symptoms are severe.’
But Lorraine Williams, from the Thyroid Trust, knows how lifetransforming treatment can be. For years, the 51-year-old struggled to get a diagnosis despite feeling exhausted all the time. However, she was prescribed levothyroxine by her GP in 2009.
‘At first I did get side effects such as the skin on my face going puffy and dementia-like symptoms, but my regular GP kept testing my blood to adjust the drug levels,’ she says. ‘Once they hit on the right dose I could function normally again. Thank goodness I had good doctors. The drug can make a profound difference.’