Real Life: Thyroid tyranny
Even though her doctor had diagnosed a thyroid problem, and she was undergoing treatment for it, this writer still couldn't understand why she wasn't getting better
Published 19/04/2010 | 05:00
I sat across from my GP and prayed that the latest round of tests had found a cause of my symptoms but he told me they showed nothing. Like many thousands of others in Ireland I'd been suffering from hypothyroidism for years, a condition that arises from an underactive thyroid gland, found in the neck.
This gland releases hormones into the blood stream which regulate metabolism and cell regeneration. It is vital for good health and when it is underactive it causes depression, weight gain, coldness, brittle hair and nails, among other problems.
When overactive it is called hyperthyroidism and this causes nervousness, anxiety, and weight loss.
What I found strange was that despite being prescribed the recommended treatment, a drug called levothyroxine, I still had all the symptoms of hypothyroidism.
I've since learnt that many thousands of people feel the same way and still others have symptoms of hypothyroidism but blood tests that are normal and so they are left untreated. Now some doctors may have the solution as to why.
In my case I'd been exhausted, depressed, cold and miserable for weeks. I'd gone from an active, outgoing, vivacious person to living like a little old lady barely able to leave the house and surviving by napping every few hours throughout the day.
The coldness was unbelievable. I would lie under a pile of blankets covered in jumpers with hands and feet like icicles. The depression made everything difficult. Laundry went unwashed for weeks, I couldn't face it. Dinner most nights was a take-away. I didn't see my friends, I couldn't.
I could barely face another day and after months of doing very little but lying on the sofa with nothing to say to my husband when he came in from work, I started to think he would be better off without me.
Luckily I then found Thyroid UK, a website that has been awarded the Information Standard certificate, meaning their information is accredited with being up to date, with all statements backed up with properly sourced and referenced research. It was set up by Lyn Mynott in order to raise awareness of the problems relating to using blood tests to diagnose thyroid disorders.
Lyn explains what could be going wrong.
"Conventional testing for hypothyroidism measures the TSH (thyroid stimulating hormone) in the blood. If you fall outside the normal range you will be offered treatment. However, what is normal for one person might not be normal for another and as most patients were not tested when they were well, doctors cannot know what is normal for them.
"Furthermore, patients should be offered a full range of tests which measure the T4s, T3s and thyroid antibodies. T4 is the actual thyroid hormone -- it is converted in the cells into T3.
"Most GPs don't go any further than a standard TSH test. If it's normal they send patients away or prescribe anti-depressants."
Lyn also claims that evidence suggests levels of TSH in the blood vary depending on when the test is done and some doctors argue that measuring the body's temperature and saliva tests are more reliable.
These doctors believe you can have 'normal' lab results but still be suffering from hypothyroidism and should be given medication. They also believe that if a patient has symptoms of hypothyroidism, even on medication, then they may need a less used natural drug called armour thyroid. In some instances, the adrenal glands may also need to be treated alongside the thyroid gland.
There is growing support for the views of Thyroid UK and these doctors, such as Peatfield, Skinner, Myhill and Hyams, all of whom have clashed with the General Medical Council in the UK. Yet they have massive support from patients, who claim they would not have recovered without their more unconventional approach.
As my GP could do nothing but offer anti-depressants, I sought help privately from one of the expert thyroid doctors recommended by Thyroid UK. Despite Dr Peatfield's trouble with the General Medical Council, his diary is bulging with patients eager for a cure and I had to wait two months before I could get an appointment.
Using a saliva test he diagnosed me as having exhausted adrenal glands. This meant my body couldn't fully utilise the levothyroxine I was taking. In fact, it probably made me worse.
He put me on nutritional supplements that assist the thyroid and adrenal glands. Very quickly my energy levels came back, I was more alert, less depressed. It is believed that one in 1,000 suffers from some form of thyroid disease.
Louise Marry, an osteopath from Co Cavan, had been seriously ill for six years with symptoms of hypothyroidism.
"I was 25 years old, my hair was falling out, I could barely walk up the street without resting and I had to sleep for hours every day," she says. "But because my thyroid tests came back as normal I wasn't taken seriously by the doctor. When I got so bad I was bed-bound, the doctor said I was depressed and suggested anti-depressants."
Despite seeing a raft of doctors she was none the wiser and started to trawl the internet looking for another solution.
She found Dr Gina Honeyman, who has co-authored books and articles on thyroid management and metabolic health. She has worked closely with Dr John Lowe, editor-in-chief of Thyroid Science and director of research at the Fibromyalgia Research Foundation.
As well as their joint research projects, Dr Honeyman has set up a clinic in Boulder, Colorado, called the Centre for Metabolic Health where she also does long-range consultations.
Louise says: "Dr Honeyman ordered a saliva cortisol test to check my adrenals and, as I suspected, they were not working correctly. So she suggested medication for my thyroid that I got from my doctor and a natural supplement for my adrenals.
"Within a week I felt a huge weight being lifted from my body. It was as if before I had been walking in water with weights on my feet. Within a month there was a huge difference to my hair so I didn't need hair pieces any longer."
Dr Honeyman believes there could be many thousands of people with thyroid dysfunction who are left untreated.
"Lab test results for TSH, free T3 and free T4 are often 'borderline' or 'within the reference range' and patients are told that they cannot have a thyroid problem.
"Your lab tests are just one part of the diagnostic puzzle, there are other approaches. I believe the underlying cause of ME, fibromyalgia, and chronic fatigue syndrome for many people could be hypo-metabolism due to thyroid disease."
The dissatisfaction of thyroid patients was shown in a 2006 patient survey, which highlighted that almost 40pc felt they had not been dealt with very well by their doctor while seeking a diagnosis of their symptoms.
Despite this, the view among much of the medical community still remains that levothyroxine is the only treatment that should be given for this condition and the only validated method of testing thyroid function is blood.
Yet the private doctors point to their patients who recover as proof that their less orthodox methods work. Grace O'Malley, a 24-year-old from Co Meath, also sought treatment from Dr Honeyman when conventional medicine failed her.
"I was constantly tired and felt overwhelmed by the smallest everyday tasks. Finally I went to a doctor and had blood tests which all came back clear. But I wasn't getting any better and felt cold, tired and depressed.
"Luckily last year I found Dr Honeyman, who addressed a problem with my adrenal glands and since then I started to get better. I have more energy and am so relieved."
As a journalist I'm interested in the science behind the medical claims but as a patient I just want to get well. Doctors such as Peatfield and Honeyman point to their own or little known research as fact, which is largely ignored by the wider medical community.
However, my experience speaks for itself, as does that of so many chronically fatigued people who were left, as I was, more dead than alive. Hypothyroidism shortens lives -- that is a fact. Science seems to be failing the sufferers of this disease -- also a fact. Unless doctors start to listen to and believe patients, many more will suffer needlessly.
- www.drginahoneyman.com, For further info call louise marry on 087 2465103 / 083 313 3914