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The penny-pinching stance by Community Care Groups condemns thousands of hypothyroidism patients to chronic fatigue, depression and other symptoms. NHS England chiefs have demanded CCGs make hormone replacement drug liothyronine – codenamed T3 – available but a survey by The Thyroid Trust found that 61 of 106 CCGs – 58 percent – have failed to fall in line with the direction.
Lorraine Williams, director of the support charity, dubbed the situation “the other hormone replacement scandal” following the HRT shortage for menopausal women.
She added: “Patients frequently report that T3 has given them their lives back, enabling them to return to work when they had felt unable to function.
“CCGs have not adopted national guidance as the basis of theirT3 prescribing policies and are refusing or reducing T3 prescriptions. The situation is worsening not improving.”
About one person in 20 has a thyroid problem and eight percent of women over the age of 50 and men over 65 have the condition.
T3 is critical for sufferers who do not respond to the more routine treatment of levothyroxine. But CCGs, which determine what NHS services should be available in an area, began refusing to prescribe the drug after its price soared from £5 a packet to £250.
Advanz Pharma, the pharmaceuticals giant that supplied Britain’s health bodies, was fined £100million last year by the Competition and Markets Authority for its inflated prices. In the absence of free T3 on the NHS, patients have had to purchase untried but cheaper versions of the drug from overseas.
The Thyroid Trust report points out the drug’s prices have been dropping and it is now available for £63 for a month’s supply.
But the survey showed 61 CCGs “withdraw, refuse or reduce prescriptions” because it is classed as a “high cost” item by health chiefs. Seven CCGs only allow the drug to be prescribed in the event of extreme hyperthyroidism symptoms in hospital, while 22 will not prescribe it to new patients.
The report said: “Access to T3 is unfairly and inconsistently applied across parts of the country – and decisive action to resolve this is urgently required.” An NHS spokesman said: “It is for individual clinicians to determine if patients should be prescribed liothyronine.
“In exceptional circumstances, where a specialist doctor has recommended this medicine, a decision is made as part of a conversation between the patient and healthcare professional managing their care.”
‘I kept complaining untill they gave me my lifeline pills back’
Former police officer Carole Morgan-Anstee, 62, went through “hell” after her T3 was stopped.
The mother of two was prescribed the drug after suffering symptoms including chronic fatigue and hair loss for 15 years. She had just started to live a normal life after being treated with T3 for five years.
Her life was turned upside down again when her endocrinologist told her he had been ordered to stop prescribing it for her.
He said the problem was that her local Bristol North Somerset and South Gloucestershire CCG had began cutting back on T3 supplies.
Carole said: “I was really upset. It was hell. My treatment was completely within the guidelines and he knew how ill I would get if they took it away. It had taken me 15 years to get it prescribed, then it took me about three years to feel better. I was starting to feel I could do stuff and not fall asleep every time I went anywhere.”
Carole, of Brent Knoll, Somerset, went online and bought the drug from Bulgaria, Mexico and Turkey and while on holiday in Greece. She became ill when her supplies dried up completely as a combination of the pandemic and Brexit.
She said: “I got ill. I had chest pains, I was tired.
All these symptoms came flooding back. I wrote to them and said you have to do something. I kept complaining, kicking off. Eventually, they agreed to reinstate my T3. But there were lots who didn’t have it reinstated because they didn’t do what I did.”
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