Pain aggravation: the human cost of medicine price hikes

The UK’s competition watchdog has fined pharmaceutical company Advanz over £100m for inflating the price of its thyroid tablets by up to 6,000%. The exorbitant costs resulted in NHS clinical commissioning groups advising doctors not to prescribe liothyronine, locking out many people who depended on the tablets to alleviate the symptoms of hypothyroidism.

Related: Pharma firm Advanz fined after thyroid drug price hike of 6,000%

Without their tablets, some patients experienced the return of symptoms such as depression and fatigue or were forced to turn to online pharmacies, where they risked buying fake products.

Here two readers share how difficult obtaining the tablets was after the price hikes.

Lyn Mynott, 67, chief executive of Thyroid UK

I asked my GP if I could go on liothyronine and it got rid of almost all of my symptoms so I could go back to work full-time. I had been on it for years and then the NHS “drop list” went out, and I got a letter from my surgery saying I was going to have it withdrawn, just like that. I went to my GP to have a chat and he said it was out of his hands.

So I was stuck and I thought “oh my God, what do I do now?”. I knew some people were accessing it via private prescription, but my GP wouldn’t give me one. This meant I would have to start paying for a private doctor’s consultation, which costs between £150 and £400.

In the beginning, I did notice a downturn in my symptoms because liothyronine is fast-acting; it’s out of the body in eight hours. I got back pain, muscle aches, tiredness and dizzy spells.

So I thought, I’ll have to get it for myself online, and in the beginning I got the UK brand which was very expensive – £246 for one month’s supply. Then I found it from a pharmacy in Europe without a prescription, which wasn’t what I wanted so it caused me a lot of stress, but it’s £35 plus postage.

I worry whether I’m getting the right thing because it’s not the UK brand, and when you buy online you do worry whether you’re getting a fake product. I don’t think it is because I’ve felt well on it, but it’s a concern. In my job I see a lot of people getting theirs from various places, like Greece and Turkey, and you think “goodness, I’m not sure that’s a good thing”. As a charity we don’t advocate buying it online.

It makes me very angry, very frustrated.

David Durell, speaking on behalf of Janet Durell, 86, who has Alzheimer’s

Janet wasn’t doing well before she started taking liothyronine. She used to sweat profusely even when it was cold. She was like a blimming zombie. We saw the thyroid tablets on a TV programme and asked the doctor, and she said “I can’t prescribe it anyway on the NHS”, so we got Janet a private prescription, which was £10 per tablet in 2018, £300 a month. It was like a magic bullet – it changed her totally, she got more energy.

Related: UK drug companies fined £260m for inflating prices for NHS

But because of the price I started to do some investigation. I was a bit uncertain about buying it on the internet so I went to the doctor and she gave me a private prescription, which I sent to Germany. They posted me 100 tablets at about 27 pence per tablet. I could have got it from Turkey for about the same price, but I was unsure if it was a proper pharmaceutical product I was buying.

Since then, my wife’s been referred to an endocrinologist and he agrees she needs liothyronine but he says the clinical commissioning group won’t allow him to supply them because they’ve been withdrawn from the NHS due to the cost.

Now that the CMA has sued this company, if GPs start prescribing again at a lower price we will go back to them.