The UK competition watchdog has fined pharmaceutical company Advanz £ 100m for inflating the price of thyroid pills by up to 6,000%. The exorbitant costs prompted NHS clinical order groups to advise doctors not to prescribe liothyronine, blocking many people who depended on the pills to alleviate the symptoms of hypothyroidism.
Without the tablets, some patients experienced the return of symptoms such as depression and fatigue or were forced to resort to online pharmacies, where they risked buying counterfeit products.
Here two readers share the difficulty of getting the tablets after the price hikes.
Lyn Mynott, 67, chief executive of Thyroid UK
I asked the GP if I could take liothyronine and it got rid of almost all the symptoms so I could go back to work full time. I had been involved for years, and then the NHS “drop-down list” came out, and I received a letter from my surgery saying I would withdraw it as well. I went to my GP to chat and he told me he couldn’t write it down.
So I got stuck and thought “oh my God, what do I do now?”. I knew that some people accessed it by private prescription, but the GP would not give me any. This meant he would have to start paying for a private doctor’s consultation, which costs between £ 150 and £ 400.
At first, I noticed a decrease in my symptoms because liothyronine has a rapid action; it is out of the body in eight hours. I have back pain, muscle aches, tiredness and dizziness.
So I thought I should get it for myself online and at first I got the UK mark, which was very expensive – £ 246 for a one month supply. I then found it in a European pharmacy without a prescription, which was not what I wanted, so it caused me a lot of stress, but it is £ 35 more.
I worry if I’m getting the right one because it’s not the British brand, and when I shop online, I worry if I get a fake product. I don’t think it’s because I felt good about it, but it’s a concern. In my job I see a lot of people receiving it from various places, like Greece and Turkey, and you think “goodness, I’m not sure it’s good.” As a charity, we do not advocate for online shopping.
It makes me very angry, very frustrated.
David Durell, on behalf of 86-year-old Janet Durell, who has Alzheimer’s
Janet was not doing well before she started taking liothyronine. He used to sweat profusely even when it was cold. It was like a zombie climbing. We saw the thyroid tablets on a TV show and asked the doctor and he said, ‘I can’t prescribe it to the NHS anyway’, so we got Janet a private prescription, which was £ 10 per tablet on the 2018, £ 300 per month. It was like a magic bullet: he changed it completely, he had more energy.
But because of the price I started researching. I was a little unsure about buying online, so I went to the doctor and he gave me a private prescription which I sent to Germany. I was given 100 tablets at about 27 pence per tablet. I could have gotten it from Turkey for the same price, but I wasn’t sure if it was a suitable pharmaceutical product to buy.
Since then, my wife has been referred to an endocrinologist and he agrees that he needs liothyronine, but says the group of clinical commissioners will not allow him to supply them because they have been withdrawn from the NHS because of the cost.
Now that the CMA has sued this company, if GPs re-prescribe at a lower price, we will be back.