Hypothyroidism is a complex disease to diagnose and treat appropriately, and many patients have to fight medical professionals to prescribe the right treatment.
In 2008 I was seeing my GP regularly for symptoms including oedema, palpitations, fatigue, low mood, anxiety and high cholesterol. Following thyroid blood tests, my GP diagnosed me with hypothyroidism.
Levothyroxine: my response to treatment
The first-line treatment for hypothyroidism is levothyroxine, a synthetic version of the body’s natural hormone thyroxine (both referred to as T4). My GP put me on a starter dose and told me that hypothyroidism was easily treated with a daily levothyroxine tablet taken for life. I thought: “Great! A little pill once a day and all these issues will be resolved!”
During the next seven years on levothyroxine, I continued to make many return visits to the GP with continuing symptoms, and some new ones too, becoming even more unwell. I felt like an 80-year old, despite being only 60. Things came to a head when I took a list of my symptoms to the GP who screwed up my notes, threw them back at me and asked me which one I wanted him to focus on! He then referred me to the local mental health services for a psychological assessment.
I realised that in order to get better, I had to rely on myself. I hadn’t really questioned the narrative
that thyroid disease was easy to treat and that a daily pill was all I needed. After all, in all those years no alternative treatments were mentioned, let alone offered.
Liothyronine: the answer!
I found there was an alternative treatment, liothyronine. In healthy people with normal thyroids, thyroxine, an inactive hormone, has to be converted to the active hormone triiodothyronine (referred to as T3) needed in every cell and organ in the body. But people with thyroid disease take medication to replace the hormones that the body no longer produces. In some cases, they don’t convert T4 to T3 effectively for reasons that aren’t yet fully understood. Sometimes, it’s caused by a genetic abnormality.
I was able to pay for a private test to see if I had this conversion problem and it was subsequently confirmed. I was relieved to discover why I was unable to benefit from levothyroxine alone. I learned that taking liothyronine was likely to help me. Low levels of triiodothyronine are known to increase health risks, such as cardiac and cognitive issues, and good levels help to regulate breathing, body temperature, body weight, muscle strength, cholesterol levels and the nervous system.
The benefits of liothyronine – and the cost
I therefore requested a referral to an endocrinologist who assessed me and to my relief, suggested a trial of liothyronine. The bad news was that I would have to source it myself. At the time it was unaffordable for me in the UK (around £248 for a packet of 28 tablets). But I could buy it over the counter in Turkey or Greece for a fraction of the price (€1.10 for a packet of 30 tablets).
Annually I spent my ‘holidays’ travelling to pharmacies in the area, to access sufficient, safe supplies of T3. As soon as I started on liothyronine I felt markedly better. I no longer needed a daytime nap. I could watch TV till bedtime, rather than falling asleep mid evening. My mood was lifted and life felt worth living again, and the other multiple health complaints disappeared.
Things came to a head when the Covid pandemic struck and I realised I would not be able to travel to buy my bona fide medication. I needed a prescription of T3 on the NHS. I was advised that I needed my endocrinologist’s support. Eventually, he suggested I undergo a six-week trial to prove I needed T3. At the end of the trial, the data indicated that I did indeed need liothyronine.
Constant reviews
I recently had my review appointment with my endocrinologist. Most endocrinologists expect their treated hypothyroid patients to have a regular blood test with a result for the thyroid stimulating hormone (TSH) within a specified range. Anecdotally, patients on liothyronine find that their result falls below this range and this function is deemed suppressed. This leads to patients having their medication adjusted downwards, regardless of symptoms.
I was shocked to be asked to provide written evidence of the trial I had undergone before, in order to prove that I still needed liothyronine. However, I have no choice now because the NHS won’t fund further prescriptions for me unless I comply.
It’s been 15 years since I was first told I had a thyroid issue and I am still fighting for appropriate treatment. It seems crazy to me that after suffering prior to my initial diagnosis, then suffering a further seven years on levothyroxine and then given the chance to take liothyronine which essentially gave me my life back, here I am still being asked to keep proving my need for it.
What’s the problem with liothyronine?
The problem is cost. Between 2009 and 2017 there was a huge price-hike for liothyronine that eventually led to the Competitions and Markets Authority imposing millions of pounds’ worth of fines on those responsible.
As a result, the NHS took strong measures to reduce the number of prescriptions issued for liothyronine. To support this decision, it called into question the safety and efficacy of liothyronine. In 2017, the NHS listed it under “Items which should not be prescribed in primary care” and defined this: “Items which are clinically effective but where more cost-effective products are available, including products that have been subject to excessive price inflation.”
Since then, the cost of liothyronine has dropped by about 85% but the NHS continues to treat it as a high-cost drug because it is still more expensive than levothyroxine. It makes no sense for this life-giving hormone, that some of us can’t produce ourselves, to be withheld from patients, and by doing so, deny us the opportunity for good health.
Change is needed: knowledge of clinicians
GPs seem to have very little training on thyroid disease and this can lead to poor, delayed diagnoses of thyroid disorders, particularly those that are unusual. Thyroid patients may find their
endocrinologists are diabetes specialists and, in the experience of patients, seem to lack sufficient understanding of hypothyroidism.
As a patient I have found it very difficult, if not impossible, to find specialists who fully understand the condition and recognise the importance of the sensitively balanced system controlling the thyroid. Even the British Thyroid Foundation seems not to acknowledge the existence of genetic issues with conversion, apparently ignoring many scientific articles on known genetic variants that cause thyroid hormone conversion issues.
Thyroid patients are mainly women, and they are not being well served by the health services. We are often ignored, experience gaslighting, a lack of respect and are not taken seriously. Many, like me, have had to become experts in their own condition and fail to secure a prompt, accurate diagnosis. Even once that is accomplished, achieving a continuation of the appropriate treatment to restore wellbeing and quality of life is often extremely difficult.
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