For twelve years I was a victim of the 'Great Thyroid Scandal'; It took Gayle Coyler a decade to convince GPs they were giving her the wrong medicine for her underactive thyroid. Are thousands suffering the same plight?(Features)

Byline: Matthew Barbour

For Gayle Coyler, the past decade has been a battle. Not only did it take two years to be diagnosed with an underactive thyroid - despite suffering symptoms including extreme weight gain, exhaustion, depres- sion and joint pain - but it took nearly another ten for her to convince doctors that she had been prescribed the wrong medication.

'Between 2001 and 2002 I put on nearly five stone, I was constantly tired and I couldn't concentrate,' says Gayle, 44, a business support manager. 'Throughout this time I visited my GP but I was told my symptoms were due to my weight, the stress levels from my job and being a single parent. The possibility of a thyroid con- dition was never mentioned. By chance, a colleague had suffered the same symptoms and been diagnosed with thyroid disease. She told me I might have the same.'

Gayle, from Whitstable, Kent, booked an appointment with her GP to ask for a test. 'Despite still insisting my problems were down to weight and stress, he agreed. A week later the test came back positive and I was diagnosed with hypothyroidism,' she says.

The thyroid is a gland located in the neck. It produces a hormone called thyroxine (T4). The body converts this into a hormone called triiodothyronine, (T3), responsible for regulating the body's metabolism, the rate at which it burns energy. Hypothyroidism occurs when the thyroid cannot produce enough thyroxine or cannot convert it into T3. The condition affects 15 in every 1,000 women and one in 1,000 men in Britain.

Gayle was prescribed synthetic thyroxine, taken in tablet form, and told to return every six months for a hormone test. Over the next two years her dosage was trebled, but her symptoms failed to improve.

'I tried to explain that the medication wasn't working but the doctor said my weight and lifestyle were caus- ing the problem. It was exasperating,' she says.

In late 2004 Gayle moved from Kent to Bristol and was referred to see an endocrinologist at Bristol Royal Infir- mary.

'As soon as I walked through the door he said he didn't know why I was there,' she says. 'He told me that my T4 levels were fine, that the drugs had worked, and suggested that the problem was that I was a couch potato. At the time I was senior supervisor for a team covering the whole of South Gloucestershire and Bristol, so I was far from inactive.

I left in floods of tears feeling as if I would never get taken seriously.' In the following years, Gayle saw many doctors, each dismissing her concerns. In desperation, she turned to the internet and came across a website run by Dr Barry DurrantPeatfield based in Surrey.

On his site, it explained that he had left his job as an NHS GP in 1980 to open a private practice to offer treatments that the NHS would not, and written a book called The 'Great Thyroid Scandal'nd How To Survive It, about how synthetic thyroxine does not work for everyone.

'I saw Barry in March last year. He asked for all my blood test results and for me to keep a diary of my food intake, blood pressure and temperature when I woke for a week.

'When he saw my results he told me he knew exactly what the problem was. I was not converting the T4 form of the hormone into the active T3 form, so while blood tests showed I was fine (they only monitor T4 levels), this was far from the case. I could have cried I was so happy. It felt as if there was a light at the end of this long tunnel.'

In 2001 Dr DurrantPeatfield was suspended by the General Medical Council for his stance on thyroid disease treatment and subsequently gave up his licence to practise, meaning he can no longer prescribe medicine. However, he recommended Gayle purchase a synthetic T3 supplement through a website.

'Within two months I'd lost more than two stone and felt like a new person. Friends told me the ''old Gayle'' was back - for me it was nothing short of a miracle.' Since then Gayle, whose son Tom is 23, has finally been prescribed the T3 supplement on the NHS after her GP attended an endocrinology confer- ence and heard about Dr Durrant- Peatfield's theory and how it worked for many patients.

'Now I can get my medication on prescription which is unheard of, but similar to many GPs, mine is afraid of going public,' she adds.

Gayle is not alone in her plight. An esti- mated 250,000 UK patients are suffering with the same con- dition, and are either being misdiagnosed or prescribed incorrect medication because of NHS testing guidelines and attitudes to synthetic T3, according to cam- paign group Thyroid Patient Advo- cacy (TPA).

However, Dr Mark Vanderpump, consultant endocrinologist at the Royal Free Hospital in London, warns: 'Roughly five per cent of patients do not respond to conven-ional T4 therapy and there is active research being carried out to understand why these people react differently to their medication.

'We must take an evidence-based approach to what works best - there have been 12 trials that show T3 makes no difference to these patients' health. Clearly sufferers are taking T3 because they feel desperate, but clinical evidence shows it doesn't work.

'The current version of synthetic T3 results in dramatic peaks and troughs of hormone levels, which can increase the risk of heart prob- lems and reduce bone density. As doctors we have to work within guidelines from organisations such as the British Thyroid Association and the Royal College of Physicians.'

Sheila Turner, 73, who set up TPA six years ago after suffering a simi- lar experience to Gayle, disagrees. 'We want an enquiry into how this condition is dealt with by the NHS,' she says. 'Every day my inbox is full of emails from people who say their GPs are too frightened to step away from official guidelines.

'Cost differences or lack of evi- dence of the T3 drug working are cited as reasons not to change. This is ridiculous when we have so much anecdotal evidence to the contrary.'

The synthetic T3 costs [pounds sterling]43.32 for 28 tablets, while T4 is [pounds sterling]2.08, but Dr Durrant-Peatfield believes cost and ignorance cannot stand in the way of so many thousands of people being denied what they need.

'The truth is that T4 doesn't help many patients. It might cost the NHS under a tenth of T3 but why even prescribe a drug that isn't effective? In the meantime, thousands of men and women are suffering without the right treatment.'

www.tpa-uk.org.uk

CAPTION(S):

INSTANT BENEFIT: Gayle lost two stone within two months of taking T3