Patients who rely on a life-changing thyroid medicine to lead a normal life say rising costs mean it is being withdrawn.
Norfolk members of the Improve Thyroid Action Group have accused the NHS both locally and nationally of prioritising money over health, after the specialist drug was withdrawn by clinical commissioning groups (CCGs) in Norfolk and Waveney last year.
But the medicine liothyronine, known as T3, is also part of a national review into what is available on prescription - and campaigners say they have been forced to go online to source it.
A spokesman for Norfolk and Waveney's CCGs it had to make cost-effective choices at a time of increasing demands on the NHS.
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 T4 - the standard treatment.
One of the campaigners, Susanna Spencer from Norwich, was diagnosed with graves disease in 2000. Ms Spencer, 59, fought to be prescribed T3 after enduring many treatments which did not work for her, including T4. But her GP and endocrinologist told her it was not offered and there was no evidence it worked. She said: 'I honestly felt like I was dying a slow death.'
After consulting patient forums on the internet, Ms Spencer was able to buy T3 online. But she said patients like her were 'the only group who have no choice in their medication. It is T4 or death.'
Tara Riddle, from Wymondham, said: 'For those patients who need liothyronine T3 - like me - it is a life changer.'
Mrs Riddle took T4 for around 25 years, and said she functioned relatively well on the drug.
But in 2014 she became ill with many symptoms including severe pain.
'But my worst symptom was utter overwhelming exhaustion,' she said. 'I often felt too weak to stand unsupported, getting up and dressed was enough for my morning.
'I could not go shopping, buying everything online instead.
'If anyone came to visit, I couldn't welcome them – I just stayed lying on the sofa.'
This continued for nearly two years, while Mrs Riddle pushed her GP and three consultants to let her try T3. Eventually, her GP gave her a trial.
'After four weeks on T3, it was nothing short of me getting my life back,' she said. But her GP was only able to prescribe it for a few weeks, and now Mrs Riddle has also been forced to turn to the internet to get hold of the medication.
Both Ms Spencer and Mrs Riddle paid for private tests which found they had a defective gene, DIO2. This means their bodies do not convert T4 to T3, as would be expected.
Megan Aitken, 25, had an operation in April 2015 in which her whole right thyroid lobe was removed due to an abnormally large thyroid gland which would continue to grow.
Since then, a private doctor diagnosed her with hypothryodism and put her on T4 straight away. Her body also had issues converting the T4 to T3, so she now takes a medication which has slow release T3. However, this was to be imported from Germany at a cost of £49 for 30 tablets.
Miss Aitken said: 'My symptoms for when I was at my worse were terrible. I am talking about sleeping 15 to 18 hours a day, vertigo, dizzy, headaches, joint pain everywhere and muscle pain all the time. Severe depression which is constant, it never went away, anxiety, dramatic weight fluctuations - it goes on. For young people nowadays, life is expensive enough, let alone paying hundreds or even thousands of pounds a year to get treatment and care that the NHS should be giving.'
A spokesman for the five Norfolk and Waveney CCGs said: 'The clinical evidence for the use of liothyronine in the management of hypothyroidism is weak and there is also concern over the long-term safety of this medication.
'Liothyronine was classified as 'double red, not for routine prescription' in Norfolk and Waveney in 2016, after careful consideration by local clinicians. This was in line with other areas of the NHS in England.
'At a time of increasing demands on limited NHS resources we must all ensure that evidence-based and cost-effective choices are made in relation to what drugs are commissioned.
'The NHS is currently holding a national consultation on items that should not be routinely prescribed in primary care. Liothyronine is one of the drugs being considered in the consultation.
We would strongly encourage anyone who wishes to know more about the consultation or have their say to read the details at www.engage.england.nhs.uk/consultation/items-routinely-prescribed/ where they can give their opinions and insights.
'A further phase of the consultation will look at whether the NHS should prescribe medicines which people could normally be expected to purchase 'over the counter' such as paracetamol, laxatives and cough/cold remedies.'
An NHS England spokesman added: 'There is an ongoing consultation about prescription items, including liothyronine, and no decision will be made until after the consultation has concluded.
'NHS England encourages all stakeholders including patients who access this treatment to participate in the consultation which concludes on October 21.'
What are T3 and T4?
Both T3 and T4 are hormones found in the thyroid. So 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.
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.
Officially, the Royal College of Physicians' guidelines say T3 is uneccesarry and Public Health England has told local health authorities they can take it off their list of prescribable drugs. No CCGs in Norfolk and Waveney currently offer the drug.
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