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Hypothyroidism: Don't suffer in silence

Hypothyroidism affects one in 50 British women. So why did Sarah O'Neil's debilitating condition take more than six years to diagnose? Natasha Courtenay-Smith investigates

For many years, Sarah O'Neil, 34, a mother of three, was so unwell that she presumed she was dying. Given that her condition left her bedridden and in a wheelchair, and doctors were baffled as to what was wrong, it is easy to understand why she feared the worst.

"Every week, my children used to say to me, 'Mummy, are you going to die?' I always told them, 'No', but, inside, I was just as scared as they were.

"At my worst, my life just totally went to pot. I could feel my heart thumping in my chest all the time and it had reached a point where even breathing was an effort. I was sleeping at least 20 hours a day."

But, in the past three months, Sarah's life has been transformed. In April, she decided to make a visit to Dr Barry Durrant-Peatfield, a private, Surrey-based former GP whose book on thyroid problems she had taken out of the library in 2003.

Dr Durrant-Peatfield, who works outside the NHS, is a controversial figure in thyroid medicine, offering treatments that are actively opposed by many endocrinologists. He has a reputation for making radical claims, such as his belief that up to half of patients presenting to their doctors with depression are actually depressed because of undetected imbalances in their thyroid. As a result of his thyroid supplementation treatment, Dr Durrant-Peatfield claims an ability to improve the majority of his patients' health within weeks.

"Sarah's situation was extreme," says Dr Durrant-Peatfield. "Most people I see have milder symptoms such as constant coldness, fatigue, lethargy and a feeling of being unwell.

"People with thyroid problems generally get steadily worse over time. Sadly for Sarah, a typically casual response from her GP had seen her head a long way down that scale before she finally came to me for help. She never needed to end up so unwell. She could have been helped much sooner."

Sarah, who lives with her husband Martin, 34, an IT consultant, and children Rebecca, 13, Samuel, 10, and Daniel, eight, in Watford, was suffering from hypothyroidism, or an underactive thyroid. Now, not only does Sarah finally have a diagnosis, but also an apparent cure, thanks to a relatively simple regime of supplements and medication.

Located in our neck, the thyroid gland is one of a family that makes up our endocrine system. It contains the only cells in our body capable of absorbing and synthesising iodine, and also secretes hormones, such as thyroxine, that act as chemical messengers, telling organs and tissues what to do.

It plays a vital role controlling our metabolism and the conversion of oxygen and calories into energy. Symptoms of hypothyroidism including excessive tiredness, weight gain, constipation, aches and pains, feeling cold, dry skin, memory loss, reduced libido and depression. Hypothyroidism affects an estimated 1 in 50 women and 1 in 1,000 men in the UK.

"The sad truth for sufferers is that, with symptoms so general, they are usually sent away from their GP and told they're suffering from stress or depression," says Dr Durrant-Peatfield. "They're put on Prozac that does nothing to help the true cause."

Sarah first started feeling unwell in 1999, when she noticed that she was becoming more tired than usual. "Up to then, I'd been in good health, although I was very busy and often tired after running around after three small children, looking after the house and running my own office-cleaning business," she says. "But suddenly I felt exhausted in a way I'd never known before. I kept getting repeated sore throats and colds and also felt physically and mentally exhausted.

"By the start of 2000, I was so tired I was quite literally ready for bed at half-six in the evening. I felt as though I was slowly sliding off the face of the planet. I went to my GP, who referred me to an endocrinologist. But there, I was given short shrift. I was told that of course I'd be tired with three children to look after.

"Then they suggested that perhaps it was a return of the post-natal depression I'd had in 1994 following the birth of my eldest, and asked if I wanted to be referred to a psychiatric doctor. I replied, 'I'm tired, not depressed or mad.'"

Sarah now knows that the depression is a common symptom of hypothyroidism and is likely to have been her first obvious sign of her thyroid's malfunction.

Over the coming months, she struggled to cope. "I felt as though I was just about managing to keep my head above water. I had no idea who to turn to or where to go to get help, but I knew I wasn't imagining what was happening. I was getting weaker and weaker. I had to sell my business as I simply couldn't function."

In 2001, Sarah returned to her doctor and asked to have blood tests. Having done research on the internet and at the library, she'd begun to suspect her thyroid could be the problem. Her blood tests showed the thyroid function was bordering on low.

"But again, the doctor just told me to go home, rest and that everything would sort itself out," she says. "I became a total nightmare to live with. I was constantly weepy and short-tempered with both frustration and worry - both are also typical symptoms of a thyroid problem.

"My husband also had to take over many of the household chores and cooking, as I was simply no longer able to do them. It was all I could do to get the children to school, and then I would sleep all day until it was time to collect them again."

In September 2003, Sarah reached breaking point. "My marriage was by that point under huge strain. I honestly wouldn't have blamed my husband if he'd walked out on me there and then. I'd lost most of my friends, too. I mean, to be honest, there aren't many people who find it fun to sit on a bed in a dark room with someone who can barely speak.

"My GP did further blood tests and sent the results to the endocrinologist for a second opinion, but he replied, 'I don't need to see this lady.'"

That October, Sarah and her husband decided to pay privately to see a different endocrinologist. Again, her concerns about her thyroid were dismissed. This time, she was diagnosed with ME. "Afterwards, when my husband and I got into the car, I burst into tears and cried all the way home. ME felt like a life sentence with no cure and little treatment.

"For much of 2004, I lay in a darkened room and slept for 20 hours at day," says Sarah. "I couldn't even get up to go to the loo - I literally had to crawl there on my hands and knees. We got a wheelchair from the Red Cross so I could occasionally leave the house, which was the last thing I'd ever expected I'd have to do in my early thirties.

"Even going to the park in the wheelchair for three hours a day became like a military operation. I had to sleep even longer in the days preceding such a trip to build up the energy for it. I couldn't even hold a fork either - my husband had to feed me."

Following two long years during which her life was on hold, a visit to Dr Durrant-Peatfield was, for Sarah, a last resort.

He believes that standard thyroid function tests used by the majority of doctors are unreliable. He recommends heavier reliance on the "basal temperature test", which involves measuring the internal temperature on waking - a test he describes as "derided" by many conventional doctors, who maintain that blood tests for thyroid function are reliable, and that it is the basal temperature test that is misleading.

"The basal test has been used since 1945. It says that if anyone's temperature falls below 37 degrees on a permanent basis then they invariably have a reduced metabolic rate which needs investigation," says Dr Durrant-Peatfield. "In my experience, this reduced rate is usually as a consequence of an underactive thyroid. I also use a subsequent test called the adrenal stress index, which is where I really fell out with establishment doctors. The adrenal gland is vital to help the body cope with stress and is often impaired in the patients I see. Its function needs to be restored in order to help the thyroid gland.

"It's not that I totally disregard blood tests. I just don't take them as the be-all and end-all. What is more important to me are the symptoms described by the patient and the results of the two tests I consider more relevant."

Sarah says: "I went along [to see Dr Durrant-Peatfield] with all the results of my blood tests from the previous years. We sat and chatted for about 20 minutes, he looked at my blood tests then said to me, 'This is really easy to tweak.' He said I had a clear case of Hashimoto's disease, an auto-immune inflammation of the thyroid gland in which it is slowly destroyed by thyroid antibodies. He added Hashimoto's had led to hypothyroidism, which he believed was responsible for all my symptoms.

"My husband was very sceptical. Afterwards, he said the doctor was cruel to raise my hopes in such a way. But I felt inside that my life was about to change for the better."

Patients who are diagnosed with hypothyroidism are normally given supplements of synthetically produced hormones to make up for the deficiency. But Dr Durrant-Peatfield prefers using a natural form of thyroxine derived from cows or pigs. In just three weeks, Sarah noticed a difference.

"I felt as though a veil was slowly being lifted from me," she says. "I hadn't even realised how severely the condition had affected my vision. But suddenly everything seemed brighter and more in focus. By the beginning of June, I was spending far less time asleep and was able to walk again and leave the house. I could go to the supermarket again and take the children shoe shopping.

"Two weeks ago, I chased my three children up the stairs to the top of the house. It sounds really silly, but by the time we reached the top we were all crying as we all realised I am truly getting better. Next week, we're going swimming for the first time in years.

"My husband is still a little doubtful. He can't believe after all I've been through I'll be as well as I once was. But I can feel how my body is changing and I know I'm getting better and better every day. For the first time in years, my life is good."

Your Thyroid and How to Keep it Healthy by Dr Barry Durrant-Peatfield, Hammersmith Press, £14.99

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Comments

i think I suffer as well
[info]tootiejay wrote:
Tuesday, 27 January 2009 at 11:01 pm (UTC)
I have had a brain tumor removed in 2007 and they seem to put everything thats wrong with me down to post operative problems. Its been nearly 2 years ansd now i sweat really bad my vision is impaired at times, i general feel like crap everyday and they still tell me its post operative. just before surgery i had one doctor saying i was borderline for overactive thryoid, then they have tested me since and nothing shows inmn the blood test what shoul i do this feels lkike its taking over my existence Tootie
Late diagnosis of hypothyroidism
[info]kate_49 wrote:
Sunday, 1 March 2009 at 01:57 pm (UTC)
For years I described myself as suffering from terminal tiredness. Despite having a full time job, three children and being constantly active doing housework and gardening, I slowly and inexorably gained weight for thirteen years after the birth of my youngest child. By 1998, my health had deteriorated and I had a zero level of fitness. I could walk only a short distance before my leg muscles seized up, I suffered from cramp, "pulled" muscles, oedema and extreme tiredness. My skin was dry and coarse, my hair was falling out and I could hardly recognise myself in the mirror.

Having avoided the GP surgery for years where I was always told any medical problems were caused by excess weight, I consulted my doctor many times during the late summer and early autumn of 1998. As usual, my problems were ascribed to my obesity. By November, I knew I was dying. I stopped going to work and returned to the GP for a sick note. By good fortune, both regular GPs were absent and I was seen by a locum. I had hardly begun to describe how I felt when he asked if I had been tested for a thyroid condition.

When the results came back a week later, a TSH count of 87.0 (above 3.0 is considered too high) confirmed hypothyroidism. Since then, a daily 150 mg dose of Levothyroxine has almost completely restored me to normality. After three months sick leave, I returned to work full-time.

Hypothyroidism is a common condition. I often see people who exhibit symptoms, such as thinning hair, sparse eyebrows, obesity and coarse skin. Surely it is time for regular screening by the NHS, especially of those at most risk.

By the time of diagnosis, my thyroid had NO function. All my organs were affected. I was dying. A very simple blood test saved me.
I know this feeling
[info]sparklez66 wrote:
Thursday, 2 April 2009 at 09:47 pm (UTC)
I am so glad to know I am not the only one who was told it was stress and depression! I was always sleeping all day and night and gained 35kgs in six months.
i am still trying to find a better solution then medicine and will with no doubt read this book. thank you.
S. Khaira
Hypothyroidism
[info]sharonmk wrote:
Saturday, 18 April 2009 at 09:57 pm (UTC)
I didn't go to the Dr's asking for a test, I was being tested for other stuff and they rang me and told me i had Hypothyroidism, I wasn't shocked as I first became ill in 1992 when I gave birth to my first daughter, 2 months after she was born i noticed 5 black bruises in a perfect straight line down my left leg, I went to the Dr's because it scared me and surgery was closed I saw my Health visitor who found me a Dr. He took blood and drove it himself to a local hospital, then i had a phone to rush straight to hospital as a team was waiting for me, I had I.T.P. Thrombocytapenia, my platelet count was 4, should be between 150-400(000) and they said I would have died within 2 hrs had i not gone to the Dr's. The following year they found Anti Phospholipid Syndrome, then Lupus SLE, Chronic Fatigue, then I had a mini stroke and Epilepsy, 3 1/2 years of steroids, and weight gain. Then Raynaulds, and now Hypothyroidism. I was not meant to have another baby but I did, and it nearly killed me, I was the first woman in Great Britain to have a spenectomy during pregnancy, I was 20 weeks pregnant, my 2nd daughter was in all the papers deemed a miracle. We were lucky to be alive. But as years have passed, symptoms are just getting worse every year. I am constantly tired, constantly cold, my hips, knees and feet are always painful, and I always feel like crap. Now, it is destroying my marriage as my husband says he feels unloved (i have no sex drive anymore, i don't have the energy). I have 2 pt jobs and my 2 daughters. He says he is fed up of not having regular sex and fed up of my health problems, of living with them and living with me because of them. He won't leave either as he thinks the house belongs to him. The latest symptom I have is pain after eating, than can for hours and hours and ends up making me feel sick and very bloated, it is just another hassle i don't need. I have not been very lucky with my health. Sharon, rustyrusty999@hotmail.com
just diagnosed
[info]tamg wrote:
Tuesday, 19 May 2009 at 07:55 pm (UTC)
i cant believe so many people have gone thru the same problems as me! For years ive not been myself tired depressed weak and if any bugs was goin arond id catch it, laryngitis got so regular my doctor said it was my own fault as i wasnt using my voice properly! my friends started giving me a look that said they had lost all sympathy,one even asked if it was all in my mind.November last year was a turning point for me tho as my health deteriorated and i too could hardly walk i swelled up like a balloon i didnt recognise myself in the mirror anymore, i visited my doctor every week she did nothing, one appointment when i told her that i was constipated and hadnt been to the loo for three weeks her advice was for me to relax more! when i mentioned that i only went for a wee twice a day and that i was going yellow she raised her eyebrows and said "oh" i was waking up ten or more times in the night screaming with the pain in my hands and arms, the cramps and throbbing was almost too painfull to bear even my partner cryed one night as i was screaming in my sleep because i was so exhausted! after xmas was ruined i went back to my docs and was refferred to a rheumatologist who tested me for everything, she said that id suffered enough and she would do whatever it took to help me, i am so grateful to her, so now im on thyroxine they have just been put up to higher dose, and yeah i still feel like crap, i have bilateral carpol tunnel and need an op on both hands i have got to go for tests on my heart my calcium is low i have a vit d deficiency and muscle wasting, i am angry, as much as i try not to be i am, this was all avoidable, and im so fed up with the way its been brushed under the carpet. every bit of information i have on this disease is what ive learnt, my doctor has told me nothing! i too thought i was dying at xmas, it turns out that i was, i was hypothermic my blood pressure was barely recordable and i could hardly walk breath or talk. Even now i feel alone because my friends dont understand they just think its something that makes you a bit tired and gain weight, does anyone know why its taken so lightly?

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