The Scandal You Probably Haven't Heard About: It's Time To Improve Thyroid Treatment
There is a campaign underway in the UK that is quietly under the radar: to improve the treatment of thyroid conditions. It might not be an immediate attention-grabber, but if you stick with me for a while, you’ll see that this story has got everything: scandal, injustice, and crooked pharmaceutical companies. But not enough people are talking about it.
Thryoid disease 101: the thyroid gland governs growth rates and the metabolic and cardiovascular systems, among others. The thyroid hormones also have an impact on sleep and thought patterns. The thyroid is regulated by the pituitary gland, which creates something called Thyroid Stimulating Hormone (TSH). The TSH tells the thyroid to get to work, at which point the thyroid produces triidothyronine (T3) and thyroxine (T4). Hyperthyroidism is where excessive hormones are created, and hypothyroidism is the opposite. Hypothyroidism is typically treated with doses of synthetic thyroxine (such as levothyroxine), also known as T4 treatment, though some patients are also receiving T3 treatment, using medication called liothyronine.
Why aren’t all hypothyroid patients given both T3 and T4 treatments? According to Thyroid UK, “it is the conventional wisdom that inactive T4 is converted in the body to active T3 by ‘peripheral conversion’ in sufficient amounts to restore normal thyroid balance.” As a result, T4 treatment is often referred to as an alternative for T3/T4 treatment. Following so far?
Our story really begins with the news that the NHS is proposing to stop prescribing a number of items to patients. Some of these items can just be replaced by alternatives, such as the painkiller co-proxamol. Others can be purchased over the counter in pharmacies without a prescription, such as the supplement cod liver oil. Some of these over the counter medications have been prescribed in the past because if a patient is exempt from prescription charges, they are then able to access the medication for free. But the list also includes liothyronine, which seems like a very odd addition. It’s not like there are other T3 treatments available, and you cannot buy it over the counter.
So why does the NHS want to stop prescribing liothyronine? The answer that they give is that they want to stop prescribing “ineffective, over-priced and low value treatments,” but that is a phrase that needs unpacking.
Let’s start with ‘ineffective’. The official advice from the Royal College of Physicians is that T4 treatment is an alternative to a combined T3/T4 treatment. Public Health England uses this advice to inform the local health authority groups (CCGs), so the RCP advice carries a lot of weight. There are some patients for whom the conversion process does not seem to work properly. 90% of hypothyroid patients will see improvement during T4 treatment, but for the remaining 10%, estimated to be around 200,000 people, they will still feel unwell.
So where does the Royal College of Physicians get its advice from? In the UK, that organisation is the British Thyroid Association. In a 2015 statement, the BTA said that there is “no convincing evidence to support routine use” of liothyronine. However, in 2016, the BTA issued further guidance stating that its “position statement should in no way be used as an endorsement for discontinuing [liothyronine].”
Patients who have felt better during T3/T4 treatment would certainly dispute the idea that T3 is ‘ineffective’, but their testimonials carry little weight. Unfortunately, far too many thyroid patients’ reports of their health are dismissed and disregarded, their own symptoms ignored in favour of a ‘more empirical’ form of analysis, which focuses on levels of TSH and T4 in blood tests. There is a phrase that all thyroid patients will know and probably wince at: ‘within the normal range’. Whilst the idea of being ‘normal’ might be appealing, this is not the most comforting phrase to hear. “Does my bum look big in this?” “Well, it’s within the normal range.” It’s ballpark medicine, not tailored for the patient. The ‘normal range’ is pretty big, and it’s not universally accepted as different countries define ‘normal’ differently.
And it’s nowhere near the entire story for a patient. If a blood test detects T4 levels in the blood, and you are taking T4, that’s not really a surprise. The blood tests don’t automatically test T3 levels. There is an assumption that the synthetic T4 will be converted to T3 and that will then do its job. Some doctors will not even permit T3 tests to take place; it depends on individual local health authority groups.
So ‘ineffective’ is a dubious basis at best. As for the ‘low value’ point, well that really stings for those patients who rely on T3 to function. Many of these patients have been in pain for years. T3 treatments have given them their lives back, and to have that categorised as ‘low value’ is disgusting. Giving 200,000 people their lives back doesn’t seem to be ‘low value’ to me.
No, it seems that the ‘over-priced’ cost of the medication that is the main issue. That word — ‘over-priced’ — hides a multitude of sins, and that’s where this story takes a twist. To fully understand the developing sense of scandal in this campaign, you need to know how prescriptions work in the UK. Patients pay a prescription contribution for each item of medication, and this sum is fixed nationally (it’s like what Americans typically consider a co-pay, except it’s not a percentage of the medication cost and it’s always the same amount since there are not different health plans). If the medication costs more than this fixed charge, the NHS pays the balance. If the medication is available over the counter and is cheaper to purchase from the pharmacy, then patients are advised to do this instead, unless they are entitled to free prescriptions because they are exempt. Those exempt from the prescription charge include a number of categories including those with specific long-term health conditions, such as diabetes or, yes, you guessed it, a thyroid disorder.
Liothyronine is a ‘prescription only medication’ in the UK rather than something you can buy over the counter. That means it is only available if your doctor says so. In some countries, like Greece and Turkey for example, you can walk into a pharmacy and buy it yourself. This is an important distinction, as you will see shortly.
Liothyronine is only supplied by one company in the UK: Concordia. It is not subject to NHS price regulations and, due to a technicality, Concordia managed to get a monopoly on the supply of generic liothyronine. Can you guess what happened to the price of it? In 2006, T3 tablets cost 16p each. Now, they cost up to £9.22 each. In 2012, the cost to the NHS of prescribing T3 was £8m. By 2016, that had risen to £32m. And there were similar numbers of patients across those years; the difference can be explained purely by the rising cost of the treatment.
Concordia attempt to explain the price hikes by saying that it is a complicated drug to produce, and that changes made by the regulator, the MHRA, made the price rise necessary. But many patients smell a rat.
In March 2017, the Competition and Markets Authority alleged that Concordia was guilty of breaking competition laws by making an agreement with Actavis UK in relation to the supply of (generic) hydrocortisone tablets. The CMA “found that both companies broke competition law by reaching these anti-competitive agreements, and it also alleged that Actavis UK abused its dominant position by inducing Concordia to delay its independent entry into the market.” Whether induced or not, Concordia agreed to step back from producing the tablets, giving Actavis UK a monopoly on the product. The cost of the drug to the NHS then rose from £49 per packet to £88 per packet. This case illustrates two things: that a monopoly on generic medication leads to a massive price rise, and that pharmaceutical companies don’t always follow competition laws. Neither of these things will surprise you.
Is it much of stretch to compare the hydrocortisone and liothyronine cases and see a parallel? Perhaps you want to take Concordia’s word for it. Perhaps it really has just become expensive to produce. But do you remember what I said about being able to buy liothyronine over the counter in other countries? Well, a packet of 30 tablets bought at a pharmacy in Greece last week cost €1.15. In Germany and Sweden, a packet of 100 tablets costs £25. Is it really so much more expensive to produce liothyronine in the UK? (It’s worth noting that instead of applauding patients for their initiative, and for saving the NHS from being fleeced by a pharmaceutical company, some doctors are refusing to treat patients who purchase liothyronine abroad.)
At this point, you might think that Jeremy Hunt, the Secretary of State for Health, would be charging into Concordia’s head office, demanding to know why they are charging so much for their medication. Apparently not. Concordia says that the Department of Health has not approached them with any concerns. However, the CMA is undertaking a separate pricing investigation into Concordia, though whether it is for this medication or another is yet to be clarified. Kitti Voltaire from the Improve Thyroid Treatment group notes that a “CMA report is due next year, which is aimed at closing the loophole that has been exploited to disproportionately inflate the price of T3. There is also a confirmed new supplier of T3 to the NHS, which is expected not to charge the extortionate sums Concordia have been doing.”
Why is this happening to thyroid patients? Can you imagine this happening with other long-term medical conditions like diabetes? Well, to unpack this last strand of this story, we need to look at a distinction among thyroid patients symptoms.
They have many symptoms in common, such as fatigue, joint pain, and high cholesterol. But, there is perhaps another reason that thyroid patients’ voices are not being heard. These are voices that are often written off, ignored, interrupted, their points described as hysterical, their tones emotional, shrill… Have you guessed it yet? Two other common symptoms are menstrual irregularities and infertility; women are 5-8 times more likely to have thyroid disease.
There isn’t a definitive answer as to why hypothyroidism affects women more than men, though there are some interesting theories. The first is that as this is a hormonal irregularity, it makes sense that those whose hormones work in cycles might experience irregularity. It is thought that oestrogen and prolactin have an impact on the thyroid hormones. Some doctors think that the toxins from personal care products may be a factor, and that women are more likely to see the consequences of this as they use on average twice as many of these products as men. There is even a theory that autoimmune thyroid disease is a response to danger and stress, citing higher likelihood of the disease in patients with PTSD, and Dr Isabella Wentz suggests that women are more affected because “being a woman in our society is not as safe as being a man.”
Let’s go back to the ‘low value’ comment I mentioned earlier. It takes on a more sinister note now, doesn’t it? What it suggests is that those who benefitted from the medication are also ‘low value’, that their lives aren’t worth as much as others. Does it also start to clarify why some of those doctors don’t want to listen to patient testimonial?
A middle-aged woman comes into your office complains about weight gain, fatigue, anxiety, and depression. Half-listening, you hear “fat, frazzled, and forty.” You reflexively reach for the prescription pad, and send her off to the pharmacy for an antidepressant. You’re not listening. verywell.com
I am certain that the CCGs don’t want to appear as if they see female life as having a low value, and that their voices don’t count. But that’s how it seems to me.
I have the greatest respect and admiration for the NHS, and for the medical profession. But when something could be better, it’s necessary to point it out. And when the NHS is seemingly being held hostage by a pharmaceutical monopoly, that is a scandal that needs to be addressed.
T3 is not the best medicine in the world. It has a short half life, and the side effects aren’t great. The current tests that check T3, T4 and TSH levels aren’t great either. The perfect solution would be to develop these and improve them, rather than refuse to take the more complex tests and stop prescribing the medication. If Concordia can’t do anything about the price of liothyronine, maybe the NHS should start buying it from abroad, as some of their patients are doing already.
The proposal to stop prescribing liothyronine is still in the consultation stage, technically, though a number of CCGs have already stopped doctors from prescribing it, which rather makes a mockery of the word ‘consultation’. And, as noted, this consultation doesn’t actually consult those people who probably know the most about how T3 enhances thyroid treatment: the patients themselves. As a union representative, I know a thing or two about consultations, and the need to evaluate whether proposed changes impact disproportionately on a particular group, especially groups with protected characteristics in equality law. A proposal that disproportionately impacts on women’s health would certainly raise objections if enough people were talking about it.
Can anything be done? Yes, thanks for asking! There is a petition that you could sign if you are from the UK. I would also recommend that British readers contact their MPs to encourage them to act, if that is something that you feel strongly about. There is a letter template that you can use to write to your MP, which ITT can share with you if you contact them. There is also a Gofundme campaign that you could donate to if you wanted to. But the most important thing at the moment is to make people aware of this issue. So please, share this with those you know.
It would be really interesting to hear from any readers who have a thyroid condition, so feel free to share stories of treatments and experiences with doctors and endocrinologists in the comments.
Sources and further reading:
Health Service Journal article: NHS England ‘unethical’ to propose withdrawing life changing drug
Stop the Thyroid Madness
Check out the ITT campaign on Twitter (@campaign_ITT) and on Facebook for support and more information
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