'I was a zombie' - how wonder drug has transformed lives

Donna Hipkiss, from Norwich, said she was reaching the point of having to reduce her hours at work due to fatigue she felt from radioactive iodine treatment for Graves disease.

Donna Hipkiss, from Norwich, discusses the impact of a new thyroid drug on her life. Picture: Danielle Booden (Image: Archant 2021)

The grandmother-of-seven then began taking thyroxine which she said made her feel "so unwell" and limited her ability to look after her grandchildren and work.

When she first began liothyronine, also known as T3, she thought it would not work but noticed the difference immediately.

Mrs Hipkiss said: "If I wanted to go to the movies after work or anything like that I would have to take the next morning off work. I didn't have the energy. I could just about hold down a job as I was sat at a desk but my husband had to do the washing, the cooking, the cleaning, the ironing. He did everything at home because I couldn't do anything at home as well as go to work.

"It was just fabulous to have more energy to be able to go for walk, to be able to do things around the house to go to the supermarket and to have a full time job. To have that normal life back that so many people take for granted."

Then in 2016, the drug was withdrawn, and like many she resorted to buying it from abroad to prevent returning to how she previously felt.

She also experienced restless leg syndrome which now due to T3 now only reemerges when she is fatigued.

She said: "I have grandchildren and am enjoying being able to do things with them, go for a walk with them, all of the normal things."

Donna Hipkiss, from Norwich, discusses the impact of a new thyroid drug on her life. Picture: Danielle Booden (Image: Archant 2021)

Norfolk and Waveney Clinical Commission Group reinstated T3 last year following a three year campaign by Thyroid Support Group Norfolk led by Norwich resident Tracey Buckenham and Tara Riddle, from Wymondham.

Drugs available to patients include levothyroxine, also known as T4, to reduce thyroid symptoms - but it doesn’t work for everyone.

Jess Basey-Fisher, who lives near Loddon, has shared how T3 has made an impact on her life. (Image: Jess Basey-Fisher)

Jess Basey-Fisher, from near Loddon, had a partial hemithyroidectomy procedure in 2018 and said her symptoms left her sleeping most of the day and night, experiencing aching joints and headaches.

After reading about the drug's reinstatement in this paper she went to her GP but was initially told it could not be prescribed, following discussions she was referred and prescribed T3.

The 49-year-old nurse said: "I was a zombie. After surgery I was terrible, once I had the T4 I was able to get back to work.

"I can't imagine what it must have been like for those who had it before and taken away."

The women praised the work of "formidable" Mrs Buckenham and Mrs Riddle, who lobbied MPs, wrote a dossier for government and worked with the CCG to get the drug reinstated.

The pair continue to ensure awareness and education for thyroid patients and have become co-chairs of the Improve Thyroid Treatment (ITT) national patient group to campaign nationally for improved diagnosis and treatment.

Tracey Buckenham, left, and Tara Riddle of Norfolk Thyroid Group, are delighted that the T3 drug for under-active thyroids has been reintroduced after it was taken off prescription. Picture: DENISE BRADLEY (Image: Archant)

Mrs Buckenham, 57, director of Sportquest Holiday, said: "It's very encouraging. We're really grateful for them [the CCG] to have the foresight to work with a patient group so successfully."

Mrs Riddle, from Wymondham, who said her biggest challenge before T3, was having the energy to look after her twin grandchildren, added: "The stories are quite uplifting and we're uplifted that it is making such a difference to these people in quite a short amount of time, it can only take a few weeks. They say I got my life back.

"We are going to help to push this nationally. We recommend the CCG approach in Norfolk."

The CCG currently treats around 50,000 people in Norfolk and Waveney to correct thyroid deficiency, with a small number of people needing liothyronine.

A CCG spokesman said: “Across most of England, liothyronine is only prescribed by hospital specialists. However, NHS Norfolk and Waveney CCG has worked with local patients, including the Norfolk Thyroid Support Group, and clinicians to make it easier for those who need this drug to get it.”