‘Painful proof that one thyroid test does not fit all’ | The Telegraph | 23 September 2014

September 23, 2014

From The Telegraph, 23 September 2014. Written by Audrey Snee.

Audrey Snee says that doctors are failing to diagnose thyroid disease and that many sufferers are missing out on treatment

As a writer, I have the luxury of working from home – but sometimes even sitting at a desk is exhausting. On bad days, the muscles in my fingers ache as I try to type, and carrying my cup of coffee upstairs is an effort as my calf muscles rebel in agony.

I have other symptoms throughout my body, including eye problems, food intolerances, bowel inflammation, dramatic weight fluctuations, hair loss and nails as thin as rice paper. More worrying symptoms have appeared recently: my heart pounds through my ribcage at the weirdest of times. I feel giddy, faint and increasingly breathless and fatigued.

These symptoms have got worse over the past seven years. Various doctors have told me they may be linked to anxiety, early menopause (I am 47) and, more recently, chronic fatigue syndrome. However, my biggest fear is that my immune system has been compromised – by an untreated thyroid disorder.

One in 20 people in the UK suffer from thyroid disorders, according to the British Thyroid Foundation. They tend to affect women in their forties but also occur in men, teenagers, children, babies and in pregnancy. Yet many experts are now saying that the test commonly used to diagnose thyroid problems is inadequate. It means that people like me may not be getting the right diagnosis, nor desperately needed treatment.

The thyroid is a small butterfly-shaped gland located in the neck that is vital for most bodily functions. It works by secreting a balance of two hormones, called thyroxine and triiodothyronine, into the blood. An overactive thyroid gland produces too much of these hormones (known as hyperthyroidism), resulting in symptoms I have experienced, such as rapid heart rate, frequent bowel motions, weight loss, anxiety and sore, gritty eyes. An underactive thyroid (hypothyroidism) produces too little hormone, causing a slower than normal heart rate, constipation, tiredness, feeling cold, weight gain, poor concentration and depression.

Several short-term treatments are available for an overactive thyroid, including the drug carbimazole, while the drug levothyroxine is usually prescribed for underactive thyroid, sometimes for life.

To check for either of these conditions, GPs commonly use a blood test for thyroid-stimulating hormone (TSH). TSH is made in the pituitary gland, which controls thyroid hormone levels. A “normal” range of TSH is roughly between 0.4 and four milliunits per litre (mU/L). Lower than this can indicate an overactive thyroid, while more than four could be a sign of underactivity.

Blood tests over the years have indicated my TSH level is normal, although on the low side. I am a “borderline” case for overactive thyroid and, as a result, doctors have adopted a “wait-and-see” approach, rather than offering drug treatment.

This might sound reasonable – but it can be soul-destroying to visit my endocrinologist only for him to look not at me, but rather at the numbers on his screen, and report: “All normal, no further action.”

The first symptoms I ever noticed were in the year I hit 40, when I had a sudden inability to see much beyond a yard in front of me and my eyelids refused to close properly. At that point, I was diagnosed with Graves’ disease. This autoimmune condition, in which the immune system attacks the thyroid gland, is by far the most common cause of an overactive thyroid. As in my case, the tissue behind the eye may also be affected, causing it to swell, and producing a “staring” appearance. But I never received any treatment, the theory being that my TSH level would correct itself in time and that the eye problem would resolve.

In fact, my eyes got worse, and in the past five years I have undergone radiotherapy and several operations on my right eye, including invasive surgery called orbital decompression, where the bone between my eye socket and my brain was chiselled away to relieve the pressure on my swollen eyeball. I have been left with double vision.

My consultant at Moorfields Eye Hospital in London, Jimmy Uddin, has been campaigning for more funding to research the condition. “Sadly, no one famous – other than Mrs George W Bush – has it, so it isn’t a condition much discussed in the media,” he told me.

Overactive thyroid is a known genetic condition, and my maternal grandmother also suffered from it. My mother had been diagnosed with the disorder a few years before me, and was put on carbimazole. Within a year, she was cured and her bulgy eyes had disappeared, without the need for any eye operation.

Sadly for me, my doctors seem not to have taken my family history into consideration. Instead, my endocrinologist told me that taking medication had its risks, one of which is to make the thyroid underactive.

It seems I am not the only one in this position. The charity Thyroid UK has more than 11,000 people registered on its online chat forum, where patients discuss alternative treatments or pass on the names of doctors who are willing to treat outside the current guidelines. Many complain that their GPs rely too rigidly on the TSH test, and that it is a battle to get referred for more sensitive tests.

“There is a lot of frustration among members,” says Lyn Mynott, the charity’s chief executive, who says that testing is inconsistent across Britain. “When I started up the group, I was also frustrated. I had been ill for 15 years and didn’t get answers as to why.”

Some medical experts are also concerned at the “one size fits all” approach, arguing that the TSH test does not take account of individual difference and that people like myself, who are on the borderline between having a normal and an underactive or overactive thyroid, should be at least considered for treatment.

“It is a crude test,” says Dr Mark Vanderpump, consultant endocrinologist at the Royal Free Hospital London, “one which does not take into account differences of height, gender or age. For example, what is a normal test result for a pregnant woman will differ from that of an elderly person.

“In the current medical climate, there is greater demand for people to be treated using an algorithm set by computers, without doctors looking at the patient holistically, case by case,” he says.

Dr Vanderpump has campaigned for a national screening programme to be considered for all women aged 30, to establish what a “normal” level of TSH is for them, before they hit the age at which thyroid problems tend to begin.

But in a report published in February last year, Public Health England (PHE) announced that a screening programme was not possible, and admitted that “what constitutes a normal TSH level is still a matter of debate”, and that there was a “lack of consensus” about which patients should receive treatment.

“One of the key issues with screening for thyroid disease is that there is no nationally agreed standard for what is a ‘normal’ thyroid range,” says Lucy Boxall of PHE.

Even when people do get treatment, the level of care is not satisfactory, according to Dr Vanderpump. For example, about one million people in Britain take levothyroxine for underactive thyroid, but he says they may be on the same dose of medication for 20 or 30 years, even though changes in their hormone levels mean that their treatment should be reviewed.

As for me, I am now weaker, fatter and more forgetful than my own mother, aged 70. I am also worried about developing osteoporosis and heart disease, both risks for older women with overactive thyroid.

But this isn’t just about me. My daughter, aged 13, is now being tested for thyroid problems after developing heart palpitations and digestive problems. So far, her TSH has been classified as within the “normal” range. I worry that she too may end up having surgery for eye problems.

My hope is that for the future, people with suspected thyroid problems will be diagnosed as individuals rather than as numbers on a printout – and swiftly treated, if necessary, rather than being left to try and cope.

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