Norfolk campaigners help take 'life-changing' medication campaign to government
PUBLISHED: 06:30 26 November 2018 | UPDATED: 09:00 27 November 2018
"It is the difference between falling asleep in the school car park to now being a director of a company."
That was the impact of a medication used treat an under-active thyroid for one Norfolk mother, who has been on the forefront of fighting for the NHS to provide the life-changing drug.
Tracey Buckenham and Tara Riddle, both from Thyroid Support Group Norfolk, have been battling to get doctors to prescribe the specialist drug liothyronine - which they say is “life-changing” since - it was withdrawn by clinical commissioning groups (CCGs) in Norfolk and Waveney in 2016.
Most people with an under-active thyroid take a daily dose of thyroxine, known as T4, to reduce their symptoms.
However it has been estimated by charity Thyroid UK that up to 15pc of those with thyroid problems did not respond to the standard treatment and instead needed liothyronine, or T3.
And now Thyroid Support Group Norfolk - along with the British Thyroid Association and other groups - has presented a new report to the Department of Health with what they say is evidence harm has been caused by patients not being prescribed T3, against official guidelines.
The organisations received over 400 patients’ stories together with refusal letters from their CCGs, hospital consultants and GPs, illustrating how the removal or reduction of their usual prescription of T3 has seriously affected their health.
The report reviews and catalogues issues with over 100 different documents on liothyronine from across the NHS and gives detailed cases of patients who have suffered life altering symptoms such as depression, diabetes, heart problems, fatty liver, high cholesterol, weight gain, exhaustion and being unable to work as a result of treatment being refused, or withdrawn from them.
Those behind the report say that despite guidance saying T3 can be used, many local health authorities have told doctors they cannot provide the drug, in a move campaigners say puts money before health.
Doctors were encouraged to stop prescribing T3 by the NHS after the supplier which had a monopoly on the drug increased prices. The price of just one tablet shot up from 16p to £9.22. A typical patient would take one or two tablets a day.
In 2012, the NHS paid £8m for T3 prescriptions. By 2016, almost the same number of prescriptions cost £32m.
But Mrs Buckenham, from Norwich, said: “It was the difference between being a single mum and falling asleep in the school car park, to I’m now a director of a company and it’s expanded two-fold, I now employ four staff and put more into the system.”
Dr Krishna Chatterjee, professor of endocrinology and president of the British Thyroid Association states, “The current uncertainty, with liothyronine-treated individuals either being denied ongoing prescriptions or needing to source the treatment themselves at their own cost, seems very much against patients’ interests.”
Both T3 and T4 are hormones found in the thyroid. When a patient has issues with their thyroid, these may be produced at too low levels.
T4 does not do anything directly and has to be converted by the body into T3. But for some people, this is not possible, so they need T3 to be prescribed directly. Officially, the Royal College of Physicians’ guidelines say T3 is unnecessary and Public Health England has told local health authorities they can take it off their list of drugs to prescribe. No CCGs in Norfolk and Waveney currently offer the drug.
A spokesman for Norfolk and Waveney CCGs said: “NHS England has advised that GPs should not initiate liothyronine for any new patient with hypothyroidism. We have also now received further national guidance that the small number of patients who may have a clinical need for it should receive it from specialists with the expertise to identify need, review the dose and therapeutic response to this treatment.”
“We are currently looking at this new guidance.”