Our open letter in defence of others such as ourselves
18th May 2019
To whom it may concern,
We feel compelled to share our story, illustrated with coloured photographs, in order to defend others such as ourselves. We are identical twins. When we were born, nobody could tell us apart and so it continued. Here’s a photograph of us at around five years of age looking identical.
However, around the time of our sixth birthday, one of us [Donna] started to develop various symptoms including shortness of breath, severe lack of energy and excessive weight gain, even though we were eating the same, and she started having great difficulty with her schoolwork. Our parents were concerned and during that period, Donna was taken to see doctors on numerous occasions but nobody was able to diagnose her correctly and more time was lost. In the meantime, the other one of us [Coralie] became taller than her identical twin. Donna declined further and was demoted to a different class from Coralie at school. We no longer looked like identical twins as can be seen in the next photograph.
Eventually, Donna was seen by a brilliant National Health Service (NHS) paediatrician who knew at a glance what was wrong and carried out tests to confirm his diagnosis of thyroid failure or hypothyroidism. It was necessary for Donna to be prescribed thyroxine tablets that she had to take daily.
Thanks to ongoing prescriptions of thyroxine, Donna’s growth and development caught up with Coralie’s, Donna lost her excess weight, regained her energy and her schoolwork improved. We eventually looked alike again, as can be seen in the next photograph, and we were put into the same class for the final year of junior school.
Unfortunately, during that school year, Coralie developed various symptoms including shortness of breath, lack of energy and weight gain. She was referred to the same paediatrician who was treating her twin and subsequently diagnosed with hypothyroidism too and was also prescribed thyroxine on an ongoing basis. As a result of treatment, Coralie lost the excess weight, gained energy and was no longer breathless on exertion. We regained parallel growth and development and looked alike again.
In adulthood, we both graduated from university with a Bachelor of Science degree with Honours and commenced employment and got on with our lives. However, many years later, NHS doctors had concerns that our thyroxine dose (that we had been prescribed since childhood for our hypothyroidism and had never given rise to any symptoms of over-activity) was too high and had to be reduced. Following various alterations to our dose in accordance with our thyroid function blood test results including our thyroid stimulating hormone (TSH) levels rather than our symptoms, we were put on a thyroxine dose that was ¾ of the dose that we had been taking since childhood.
On ¾ of our original dose, we suffered from numerous symptoms including dry, thickened scalp, breathlessness, cold sensitivity, carpal tunnel syndrome, abnormal endless exhaustion, reduced appetite, headaches, chest pains, back pain, puffiness, nausea, retching, balance problems and loss of our functionality, with devastating negative consequences in all areas of our lives. We had weight gain despite a reduced appetite. Because we are identical twins, it was clear to us that our parallel problems in adulthood were due to under-treated hypothyroidism. Despite this, our low TSH levels meant that our doctors were unwilling to increase our thyroxine dose. Much time passed before we succeeded in finding an excellent doctor who recognised that we were suffering from under-treated hypothyroidism. This private doctor from Scotland, to whom we remain thankful, carried out thorough clinical assessments, studied all of our thyroid function blood test results (not just our TSH blood test results), took a detailed medical history and confirmed that our symptoms were caused by under-treated hypothyroidism.
In accordance with our clinical needs, he prescribed an increase in our thyroxine dose and over time, he changed our treatment to thyroxine and tri-iodothyronine, then to tri-iodothyronine, then to natural desiccated thyroid (NDT) treatment, which contains thyroxine and tri-iodothyronine. Changes to our treatment were made gradually under medical supervision and we were carefully monitored to ensure that we were neither under-treated nor over-treated with thyroid hormone treatment to avoid any adverse consequences. Tri-iodothyronine and tri-iodothyronine containing treatment were essential to our recovery in adulthood. Despite its efficacy during childhood, thyroxine is no longer adequate for our needs nor tolerable. Therefore, ongoing natural desiccated thyroid treatment, which contains tri-iodothyronine, is essential for us to remain alive and well. Hence, we are grateful to the NHS doctors and NHS endocrinologists in Wales in the United Kingdom who have enabled us to obtain ongoing prescriptions for our natural desiccated thyroid treatment via the NHS. In addition, it has been recognised that in our case, there is not a consistent correlation between our thyroid function blood test results (including our TSH levels) and our symptoms of hypothyroidism.
Our experiences of hypothyroidism compelled us to write a book entitled Hypothyroidism in Childhood and Adulthood: A personal perspective and scientific standpoint, which was published by Nottingham University Press (and would be of interest to scientists and social scientists) and we have since written several other books on the topic of hypothyroidism or twins/multiples. We are currently writing a further book about hypothyroidism.
In addition, since recovering from under-treated hypothyroidism in adulthood, we both did a Master of Science degree. Coralie’s Master of Science project was entitled Controversy concerning the diagnosis and treatment of hypothyroidism: Stakeholders’ views and recommendations. A summary of the findings of the project can be found via our website. We have also given presentations about hypothyroidism at conferences in the UK and abroad and we have been interviewed for newspapers, magazines and the radio. We have also shared our story via our website and social media. Next is a photograph of us taken since our recovery from under-treated hypothyroidism.
However, my identical twin sister and I have deep concerns about the difficulties still facing other people with hypothyroidism. In certain places (for a variety of reasons), medical doctors are being prevented (by certain groups) from prescribing life-saving treatments for hypothyroidism such as thyroxine, liothyronine (tri-iodothyronine) and natural desiccated thyroid treatment (which contains thyroxine and tri-iodothyronine). Preventing doctors from prescribing much needed thyroid treatments for patients suffering from hypothyroidism is both unethical and inhumane. Untreated and under-treated hypothyroidism has an extremely negative impact on an individual’s health. If hypothyroidism is untreated or under-treated, it can also lead to a life-threatening myxoedema coma. Anyone with symptoms of either hypothyroidism or hyperthyroidism should seek advice from a medical doctor as a matter of urgency so that their condition can be diagnosed promptly and they can be prescribed the appropriate treatment for their individual needs.
If someone’s thyroid is functioning, it would secrete thyroxine plus tri-iodothyronine and therefore, the routine prescribing of thyroxine-only treatment to the majority of people with hypothyroidism could automatically result in them having less tri-iodothyronine than if they had a functioning thyroid gland. Furthermore, people’s ability to convert thyroxine to essential tri-iodothyronine depends on various factors including their genetics, therefore, preventing medical doctors from prescribing tri-iodothyronine and tri-iodothyronine containing treatments such as natural desiccated thyroid treatment could adversely affect some ethnic groups more than others. In addition, women and older people are at more risk of hypothyroidism so any shortfalls in the diagnosis and treatment of hypothyroidism could discriminate against certain gender/age groups. Despite this, we know from our experiences and from the experiences of many others that tri-iodothyronine and tri-iodothyronine containing treatments such as natural desiccated thyroid treatment are already only prescribed in exceptional circumstances and not routinely prescribed and as a result, many people with hypothyroidism are already suffering unnecessarily. Any attempts to further restrict the prescribing of tri-iodothyronine and tri-iodothyronine containing treatments such as natural desiccated thyroid treatment could result in further suffering.
Pioneering thyroid researchers and erudite medical doctors should receive praise for their life-saving work. Medical doctors should be allowed to prescribe the optimal dose and type of thyroid hormone treatment for their patients with hypothyroidism in accordance with their patients’ individual needs be that tri-iodothyronine, thyroxine, natural desiccated thyroid treatment or some combination of these treatments. In addition, medical doctors should be allowed to use their clinical judgement and comprehensive thyroid function tests to diagnose hypothyroidism and monitor treatment of hypothyroidism and they should not be forced to rely solely on thyroid function blood test results. We have shared our story in this open letter as a cautionary tale so that anyone involved in preventing medical doctors from prescribing life-saving thyroid treatment for patients with hypothyroidism recognises the potential adverse consequences of such actions on others such as ourselves. We have also told our tale so that anyone involved in over-simplifying the diagnosis of hypothyroidism and monitoring of its treatment by enforcing sole reliance on the thyroid function blood test results realises that such actions could have harmful consequences on others such as ourselves. We are most grateful to all of the wonderful individuals and groups who are raising awareness of hypothyroidism and who are campaigning for improvements to the current situation.
Coralie Phillips BSc (Hons), MSc and Donna Roach BSc (Hons), MSc
Identical twin writers and illustrators
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