‘I’m playing snakes and ladders with my life’ - Woman may be forced to buy medication not available on NHS abroad
A woman who said her life was given back to her by access to a thyroid medication faces paying for the drug abroad as it is not funded by the NHS.
Vicky Moontree, 50, spent 10 years fighting to find out what was causing her extreme ill health before finally being told she had issues with her thyroid.
But what she hoped was the end of her battle to get better was actually just the beginning, as she faced resistance to prescribing a drug called liothyronine, or T3.
Ms Moontree, who amongst other things suffered with her mental health and extreme fatigue, had blamed her poor health on chemotherapy she had been through some years before.
She said: “I was self-harming, so that was a really difficult time. No one told me at the time it could be a symptom of my thyroid.”
Ms Moontree, from Syleham, in Suffolk, finally convinced a GP to send her to the Norfolk and Norwich University Hospital (NNUH) in 2015.
She said: “I had already heard about T3 and that some people found it helpful. But the endocrinologist said ‘I don’t believe in T3 being any more effective than a placebo’. That’s burnt into my head. She said: ‘You can source it yourself like others but don’t take too much of it’. I was too frightened to self medicate.”
Ms Moontree spent some time not knowing what to do, before reaching out to Tracey Buckenham and Tara Riddle, both from Thyroid Support Group Norfolk.
She sought a private test, which showed she would not benefit from the usually prescribed thyroxine (or T4), because unlike most people she could not convert T4 to T3.
She said: “I saw a new endocrinologist at Ipswich Hospital this year and he’s been very supportive. He agreed to give me a trial of liothyronine on the NHS for six months. Within a few days I started thinking ‘this is what normal feels like’.”
Her partner Mike Reid added: “I got the more colourful version I that I first met.”
Ms Moontree’s new endocrinologist agreed the trial had been successful but she said: “I’m running out bit by bit, so unless the CCG agrees to fund it, I’m going to run out.
“It feels like I’m playing a game of snakes and ladders with my life, I will think I’m getting somewhere and then you stop on a snake.”
Ms Moontree said she might have to resort to getting the medication from Germany, where it would cost £243 a month. But with Brexit looming she did not know how much longer that would be an option.
She said: “I’ve been given my life back so I’m reluctant to give that up and languish on the sofa. There is no life without T3, it’s as simple as that.”
Last month Thyroid Support Group Norfolk - along with the British Thyroid Association and other groups - presented a 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.
A spokesman for Ipswich and East Suffolk Clinical commissioning Group said: “Our CCG follows national NHS England guidance on the prescribing of liothyronine (T3) and routine prescribing of this drug is not supported. We invite Ms Moontree to contact the CCG’s patient advice and liaison service.”