I thank members who signed my motion, which allowed me to bring this important issue to the chamber.
This is my first members’ business debate this parliamentary session and, as far as I am aware, it is the first time that thyroid issues have been exclusively debated in the Parliament. That is surprising, as hypothyroidism affects 2 per cent of the population and, given that 95 per cent of sufferers are women, it is a big issue for women’s health. However, perhaps that explains why not enough attention has been paid to the issue by politicians or the medical establishment, as both are male dominated. Clare Pullar, who wrote to me recently, summed it up well when she said that it is
“a male-dominated profession actively silencing a female-dominated patient group”.
Perhaps if 95 per cent of thyroid sufferers were male, and thyroid issues caused them to become economically inactive, diagnosis and treatment might be dealt with differently. There are some men with thyroid problems, but it is undoubtedly a medical issue that affects thousands of women and the scandalous lack of appropriate diagnosis and treatment is a matter of gender discrimination.
Women are now fighting back in ever-increasing numbers, despite being ill. They are becoming experts in the field of endocrinology, and the current threat of withdrawal of liothyronine—or T3, as I will refer to it—has driven them even further. The improve thyroid treatment campaign has motivated people to become involved in the demand for appropriate treatment, and campaigners have also been motivated by the fact that so many women—mothers, sisters, daughters and constituents of MSPs—are suffering unnecessarily, being wrongly diagnosed, living half-lives, dying of heart failure or myxoedema coma, or committing suicide.
There are some patients in the public gallery tonight, and others are watching the live BBC feed, so I hope that the minister will seriously address the issues raised and will not stick to a script that is perhaps prepared by civil servants based on information from the intransigent male-dominated medical establishment.
The thyroid gland controls total health and wellbeing and has been described as the body’s engine. In the 1970s, the standard course of treatment for hypothyroidism changed from naturally desiccated thyroid, or DTH, to levothyroxine, or T4, as I will refer to it from now on. It is a synthetic hormone that is inactive and requires the body to convert it to T3, which is the active form that is needed to function. It is difficult to get a thyroid diagnosis in the first place, as many of the symptoms mimic other conditions such as depression, the menopause and even Alzheimer’s, and many women are told that they are borderline and are not given treatment, despite displaying hypothyroid symptoms. Untreated, they are likely to cost the national health service in other ways, such as through infertility treatments, antidepressants and obesity, because the problems that are associated with thyroid disorders include depression, insomnia, infertility, anxiety, hair loss, weight gain, breathing problems and extreme fatigue.
I have personal experience of all of those, as I have an underactive thyroid. I was originally on T4, but I would not be standing here today if I had not challenged a misdiagnosis when I became symptomatic again a few years ago. I was finally put on T3, which quite literally brought me back from the dead. My full story is available on the Public Petitions Committee website, if anyone wants to look at it.
When I started helping Lorraine Cleaver with her petition on the issue in 2012, I thought that I was doing it for others because my situation seemed to be resolved. Over five years later, along with many other women, I am faced with the withdrawal of my life-saving T3 simply because of cost and not because I do not need it. Unbelievably, we are now going backwards on diagnosis and treatment rather than moving forward with the up-to-date research that is readily available. It is officially admitted that 5 to 10 per cent of patients do not do well on the usual treatment of T4 and that many are unable to convert it. As the medical establishment will no longer allow the use of DTH in the United Kingdom, the only alternative course of NHS treatment for those patients is T3, which is an entirely different medicine from T4. The human body has to convert T4 into T3, and we know that some patients just cannot do that. Therefore, to suggest that patients on T3 can be safely moved to T4 is appalling and shows a complete lack of understanding of thyroid function.
The eminent Scottish endocrinologist Dr Anthony Toft recently said that he suspects that, in time, we will go back to using DTH, which some patients currently buy privately from abroad, but in the meantime all that we have is T3. It is a terrifying prospect for many women that that life-saving medicine is no longer being prescribed, on the instruction of health boards, aided and abetted by NHS Scotland. Most patients cannot afford to buy privately, and they should not have to, but the alternative is unthinkable. The British Thyroid Association recognises that the main reason for the withdrawal is not medical but the astronomical cost that is charged by the company that until recently was the only producer of T3 in the UK. In Germany, the cost of 100 tablets is £25, in Norway it is £15 and in Turkey it is £1.25. Concordia charges the NHS an unbelievable £922 for 100 tablets, a point that was helpfully highlighted yesterday by the BBC. That is a near 6000 per cent increase over the past few years. Why can it not be sourced from abroad? The issue must be resolved by tackling the price and not by attacking patients.
I turn to NHS Lanarkshire, which is mentioned in my motion. Its new clinical guidance on hypothyroidism, which was written by two diabetes experts and a general practitioner, is full of wrong information and out-of-date research, including an irrelevant paper on overactive thyroid issues. When I challenged the board, it admitted the errors, but that guidance must now be recalled from all the GPs it was sent to. The board must then ask thyroid experts, preferably those who know about T3 and who know the difference between hypothyroidism and hyperthyroidism, to rewrite it. Frankly, it is shocking that that guidance could be produced in the first place.
Last year, I got wind that the board might be issuing instructions to GPs not to prescribe T3 and to remove it from patients who were on it. The board denied that and it was only after lodging freedom of information requests that I discovered that there had been such correspondence, including an email saying that T3 is “an expensive medicine” and telling a GP practice that it would have to bear the cost if it prescribed it.
There is no doubt that the underlying message to GPs is to stop prescribing T3. That is outrageous, but it is working, because many women are now telling me that they have been taken off it and they will probably be coming to all their MSPs to tell them the same thing.
GPs have a duty to prescribe the drugs that their patients need. They should be guided by the principle of doing no harm.
The BTA’s 2015 statement has been misinterpreted by medics, because of which the BTA has recently had to clarify its position by saying:
“the BTA position statement on hypothyroidism should not be interpreted as a recommendation to not use Liothyronine or an endorsement for its discontinuation.”
That is pretty unambiguous. It goes on to say that patients who are on it should continue and that new patients can be treated with T3.
Let us be clear: there are numerous rigorous scientific studies showing that T3 is a safe and effective medication. There are hundreds of Scottish women on T3, including me, who have been saved from a slow, lingering death and there are hundreds more who could be saved. Let us remind ourselves that the medical establishment admits that up to 10 per cent cannot function on T4. That means that it admits that well over 1,000 women in Scotland cannot function on T4. What is the choice for them if their T3 is taken away?
Without thyroid hormones, patients die. Taking away T3 will undoubtedly result in patient death. Will the minister put a stop to the removal of T3 and send a clear message that GPs must prescribe it?
I will finish with the words of Morag Webster, who wrote to me bravely about her situation. She said at the end of her letter:
“They have taken my 20s, my career, my friends, but I’m a better person for it”—
Imagine her saying that. She continued:
“I’m just disappointed they have robbed me of a chance to have a family of my own.”
This is a massive women’s health scandal, which must be urgently addressed. Thyroid patients deserve fair treatment.
17:11