Why ARE women being denied a 25p thyroid pill that stops them feeling cold and exhausted? 

• Thousands of patients fear they will no longer be able to get liothyronine tablets
• In Germany 100 tablets cost £25 but in the UK it’s an astonishing £854 
• The NHS view is that liothyronine is unnecessary and shouldn't be prescribed
• Five per cent of the UK suffers from some sort of thyroid disorder  

Life can be miserable if your body doesn’t make enough thyroid hormone. And if you are not prescribed the right hormone supplement to replace it, it’s even worse.

But now hundreds of thousands of patients face the very real prospect that having finally got the right treatment, it could soon be snatched away.

When Ellen Perkins, now 50, was diagnosed with an underactive thyroid (hypothyroidism), she was initially prescribed the standard thyroid hormone replacement, known as thyroxine, or T4.

‘That didn’t work for me, I was sleeping for 16 hours a day,’ recalls Ellen, a sales and development co-ordinator at an outdoor leisure centre in Staffordshire. ‘That makes life really difficult when you are a single parent with three young children.

‘I despaired of feeling better. The medication seemed to have no effect and I hurt from the moment I awoke to the moment I fell asleep and was having three naps a day. Coming back from the school run I’d sit in a daze on the sofa. I was so cold I couldn’t feel my hands and feet.’

Ellen took thyroxine for five years, but says she was steadily getting worse. ‘I’d complain, but the doctor just said it should work and kept upping the dose.’

Then an endocrinologist swapped her to a related hormone, tri-iodothyronine (T3), which banished all those symptoms. ‘My life was transformed literally overnight,’ she says. ‘Soon I was warm for the first time in a decade. I was dancing round the house telling my sons that I had warm feet as it was such a novelty.’

Now she and thousands of other patients, mainly women, fear they will no longer be able to get tri-iodothyronine (the tablets are known as liothyronine) because the manufacturer has raised the price. In Germany and Sweden, 100 liothyronine tablets cost £25 (25p each), in the UK it’s an astonishing £854.

In 2012, the NHS paid £8 million for T3 prescriptions; by 2016, almost the same number of prescriptions cost £32 million.

The official view is that liothyronine is unnecessary, with Royal College of Physicians’ guidelines spelling out that it doesn’t recommend prescribing the pills.

As A result, Public Heath England has told local health authorities (clinical commissioning groups, or CCGs) that they can take liothyronine off the list of prescribable drugs; some have already started refusing to fund the drug, affecting patients such as Ellen.

‘I was horrified when my CCG told my GP to stop prescribing it, but my endocrinologist supported my right to continue using it,’ she says. And she counts herself one of the lucky ones.

Lyn Mynott, chair of Thyroid UK, a charity support group, says: ‘My phone has been ringing off the hook about this for months.

‘People whose symptoms improved only when they started on T3 are worried. Many fear they will be driven to buying it on the internet which means they won’t get proper medical monitoring.’

Some doctors refuse to deal with patients who buy this way.

It’s suggested that as many as 200,000 people could be affected.

T3 and T4 are naturally produced by the thyroid gland and are involved in such vital functions as how fast your body uses fats and carbohydrates and how it controls temperature and heart rate.

Symptoms of a deficiency include fatigue, weakness, weight gain, feeling cold and aching muscles.

Levels of these hormones can decline for various reasons, including autoimmune disease (where the immune system attacks the thyroid gland), serious infections, and as a side-effect of drugs such as lithium for bipolar disorder. Hypothyroidism is more common in women, but it’s not clear why.

The official view is that what all these patients require to function normally is a supplement of thyroxine, but some patients and experts say not all benefit.

It’s a long-running dispute with professional bodies replying that there is no evidence for patients’ concerns. The Royal College of Physicians is unequivocal: ‘Overwhelming evidence supports the use of thyroxine (T4) alone in the treatment of hypothyroidism. We do not recommend the prescribing of additional tri-iodothyronine (T3).’

Up to 3 per cent of the UK population are prescribed thyroxine, according to the doctors’ organisation GP Update. It’s agreed that about 90 per cent of patients improve greatly, but Thyroid UK estimates that around 10 don’t. This is because thyroxine doesn’t actually do anything directly but has to be converted by the body into tri-iodothyronine — the theory is that all the extra T4 is automatically converted.

But some patients may not be able to convert T4, according to Colin Dayan, a professor of clinical diabetes and metabolism at Cardiff University. He was part of a team that in 2009 found a gene, called DOI 2, that is involved in controlling the process that activates thyroxine.

‘A fairly common mutation can make the process less efficient,’ he says. ‘That could mean some patients with plenty of thyroxine are not able to make enough T3.’

Ellen is one of these patients, she discovered after having a private genetic test. ‘The NHS refused to run one for me,’ she says.

There is other evidence that some patients don’t do well on thyroxine. Antonio Bianco, a professor of medicine and an endocrinologist specialising in metabolism at Chicago’s Rush University Medical Center, is studying how the two hormones interact, and the effects of the DOI 2 gene.

He looked at patients in a large nutritional study and compared a group with hypothyroidism with healthy people — those on thyroxine had lower levels of T3 and were heavier, despite eating fewer calories, according to his report, published in the Annals of Internal Medicine last year.

‘Patients have complained for years of continuing to have symptoms on T4,’ Professor Bianco told Good Health. ‘Now for the first time we have documentation that supports their concerns.

‘This strongly suggests taking thyroxine for low thyroid does not necessarily return you to perfect health. Doctors should discuss the limitations of thyroxine with their patients instead of saying that all will be back to normal.’

But even if there is a reason why some patients don’t do well on thyroxine, sceptics question if iodothyronine is safe long term. They claim it might raise the risk of heart disease and osteoporosis.

However a study last year found no sign that patients were any more at risk. The research involved 400 patients on iodothyronine, and 34,000 on thyroxine, who were followed up for an average of nine years by researchers at Ninewells Hospital and Medical School, Dundee.

Endocrinologist and lead researcher Professor Graham Leese says: ‘There is a group of patients who say they get little benefit from thyroxine and feel better when they get iodothyronine as well.

‘There is no good evidence that this combination is more effective, but if these patients strongly prefer it, this study suggests the risk isn’t great, as long as their blood tests stay within the same limits. We need more research, though.’

Meanwhile, NHS England has announced it is consulting doctors and patients on the advice to withdraw iothyronine, along with some other drugs described as ‘low value’, and will publish the results in the next few months.

Concordia, which makes the drug form of T3, liothyronine, says that it is a complicated drug to produce and that changes demanded by the regulator has made a price rise necessary.

‘We would be happy to discuss any cost issues with the Department of Health, but it hasn’t approached us with any concerns,’ said a spokesperson.