1 in 20 – The proportion of people in the UK affected by thyroid disorders
A decade ago, Lilian Swallow got very ill, with a long list of complaints. ‘At my worst, I had an irritable bowel, my hair was falling out and I was so tired that just making a cup of tea exhausted me.’
Her GP sent her for various tests but they all came back negative.
‘Eventually, he decided I must be depressed and that it was all in my head,’ says Lilian, now 75. ‘But that didn’t seem right. I was so weak, I couldn’t even pick up my baby granddaughter. Friends never called after 9pm, as they knew I’d be asleep.’
Lilian, a retired legal secretary, sought the advice of another doctor, who checked her thyroid and found one crucial form of thyroid hormone was present in very low levels. She was prescribed a hormone replacement and ‘the effect was astounding. Within a few weeks all my symptoms started to clear up’.
However, the thyroid hormone Lilian was lacking is not normally screened for by the NHS, and the treatment she received is contrary to official guidelines – although a growing number of doctors disagree.
Every year, one in four people in Britain has a standard blood test to see if their thyroid hormone levels are normal. Three million are told they are thyroid deficient (or hypothyroid), and the majority are successfully treated with a synthetic version of the thyroid hormone, known as T4.
But patient groups and some experts claim the test is unreliable because it measures only one thyroid hormone. In fact there are two. The thyroid gland produces T4, which is checked in the blood test. This is then converted into T3 – the active hormone that can be used by the body’s tissues and cells.
People such as Lilian can be fine for T4 but low in T3. However, the T3 tests are complex and rarely offered by the NHS.
So, if your blood test doesn’t show you to be low in T4, you won’t be prescribed thyroid hormones that could alleviate your symptoms, including fatigue, weight gain, cold extremities, muscle aches and weakness. Instead, these symptoms are often dismissed as being ‘all in the mind’.
It is estimated that 300,000 people, mostly women, are in this position.
Official policy advises they shouldn’t get thyroid hormone replacement because they aren’t deficient – despite not knowing what their T3 levels are – and that giving them the drug could cause an overdose or damaging side-effects such as raised blood pressure.
If your blood test doesn’t show you to be low in T4, you won’t be prescribed thyroid hormones that could alleviate your symptoms, including fatigue, weight gain, cold extremities and muscle aches
This leaves doctors in a difficult position. Only around 100 are prepared to treat these people. One is Professor Stafford Lightman, a senior endocrinologist at Bristol University, who believes that there is a case for giving these patients either form of thyroid hormone.
‘Many of my patients are angry,’ he says. ‘They’re convinced doctors aren’t going to take them seriously.
‘But we don’t have a reliable blood test to tell us if enough T3 is getting into tissues. If it is, then an excess can cause harm, but if it isn’t, that’s when patients should be treated.’
T3 is given as a treatment to some patients, but mainly those who have had thyroid cancer.
Sheila Turner, chairwoman of the charity Thyroid Patient Advocacy, is fundraising for a legal challenge to the guidelines. ‘My blood tests show my thyroid levels are normal, but I can only campaign as hard as I do because I get a hormone supplement from a supportive doctor. Without it I’d be on the floor, almost paralysed with fatigue,’ she says.
She wants endocrinologists to accept there are two sorts of hypo-thyroidism – the ‘official’ sort that affects 85 per cent of patients, and those with ‘Low T3 Syndrome’. She explains: ‘We produce enough T4 but don’t turn it into T3 at all well.’
However, she and other patients may have their supply of T3 withdrawn because of the pressure put on doctors not to prescribe it. In a letter recently sent to the charity, an endocrinologist admitted to feeling ‘vulnerable and fearful’ over reports of medics being struck off or suspended for prescribing an unofficial thyroid remedy.
‘I am withdrawing my name from your list until I have been able to clarify the situation,’ she wrote.
Sheila and her supporters are taking on the Royal College of Physicians and five other bodies, including the Society for Endocrinology and British Thyroid Association. Their combined policy statement says that if a blood test shows you are not deficient in T4, you don’t need a replacement. But Sheila says: ‘It assumes that the only reason people have low thyroid hormones is that their thyroid gland isn’t making enough. It doesn’t allow for the fact that even though you’ve got enough in your blood, not enough is getting into your cells.’
Some experts agree. One is American endocrinologist Dr Kent Holtorf, medical director of the Holtorf Medical Group and the National Academy of Hypothyroidism. He says that as well as people who can’t convert T4 into T3 effectively, other patients don’t benefit from standard thyroid tests either.
‘If you’ve got a chronic disease, you’re going to have less energy for getting thyroid hormone into the cells where it is needed,’ he explains. ‘This could mean you show up as having a normal level in your blood when you actually have a damagingly low level in your cells.’ Depression, obesity, diabetes and auto-immune disease are examples.
The Royal College of Physicians is opposed to treating patients with normal blood levels of T4 because symptoms such as fatigue and weight gain are common in people in their 50s and 60s due to other factors. ‘That’s why the blood test is so useful,’ says a spokesman. ‘If patients get treated for an illness they don’t have, genuine and more serious illnesses such as cancer or liver disease could be missed.’
But one result of withdrawing treatment is that patients are driven to get supplies elsewhere, such as unregulated online pharmacies.
Lilian resorted to buying supplies from the internet when, two years after her health improved, her doctor said her blood levels of thyroid hormones were too high and she was in danger of overdosing. Her dose was cut, and within a few weeks her symptoms returned.
‘Every part of my body had a pain. I was in bed for 20 hours a day. I felt suicidal,’ she recalls. A local hospital was eventually persuaded to do tests for T3, which found her levels to be low again. Lilian was then prescribed a dose she describes as ‘inadequate’, so she tops it up with a hormone bought from a website. ‘I’ve now got more energy than I had at 60,’ she says.
But such reports don’t convince endocrinologists who support the current policy. ‘There’s a strong placebo effect with these patients,’ says Professor Colin Dayan, director of the Institute of Molecular and Experimental Medicine at Cardiff University.
‘I’ve done double-blind studies that have found patients can respond much more strongly to getting thyroid hormone in a trial, even when they have been getting it as a regular treatment. ‘They assume it’s a new and different treatment.’
But Dr Holtorf claims that official bodies haven’t been keeping up with the latest research.
‘I’ve just done a review in The Journal of Restorative Medicine showing why it is not scientific just to rely on the blood test to rule out hypothyroidism in patients who have chronic conditions,’ he says. Now researchers are looking at the possibility that certain patients do better on T3.
Dr Birte Nygaard, of Denmark’s Herlev Hospital, recently produced proposals for treating patients who have symptoms of low thyroid but normal blood levels of T4. She suggests an ‘experimental approach’, giving them added T3 at specialist centres.
Professor Lightman would like to see a similar approach in the UK.
The Royal College of Physicians has always claimed that not being able to convert one hormone into the other isn’t a serious problem – trials showed that when T3 was given to patients already getting T4, it didn’t make any difference.
But Sheila Turner has compiled a register of nearly 3,000 patients who say they remained ill when they got only the T4 hormone, but their symptoms went away when they got T3.
Meanwhile, Lilian is thankful that she got the help she needed.
‘When I was being treated according to the official guidelines I was taking 17 drugs a day and still felt dreadful,’ she says. ‘Now I’m taking one and I feel great.
‘If a doctor hadn’t gone against the guidelines I’d be dead by now. That can’t be right.’