Thyroid Awareness Week 2015! Starts Today!

Thyroid Awareness Week 2015! Starts Today!

“Let’s Cause A Flutter!” this Thyroid Awareness Week

This is your call to arms for Thyroid Awareness Week! We want you to “Cause a Flutter” about thyroid disorders.

Many people, including clinicians, believe that thyroid disorders are easy to diagnose and treat. However, according to the results of the Hypothyroid Patient Experiences survey, run by Thyroid UK for the Scottish Government as part of a listening exercise into how hypothyroid patients are being diagnosed and treated it is taking a very long time to diagnose - 21% of respondents took over 5 years to obtain a diagnosis of hypothyroidism - and many patients are being denied the treatment they need.

The thyroid produces two hormones, thyroxine (T4) and tri-iodothyronine (T3). The standard medication for hypothyroid patients is levothyroxine (T4) but in up to 16% of patients, this medication does not relieve their symptoms. Of 4,299 respondents, 23% asked for natural desiccated thyroid and 92% were refused this treatment with the main reasons being ‘lack of knowledge’ (about the medication) and ‘no evidence of superiority over levothyroxine’. 27% of the respondents asked for T3 but 72% were refused, the main reasons being, once again, ‘lack of knowledge’ (about the medication) and ‘no evidence of superiority over levothyroxine’.

The survey also shows that 4% of the respondents have been taken off some form of thyroid medication which was helping with their symptoms which Thyroid UK believes is unethical.

In respect of queries from members of the public asking for support, there appears to be a trend in local Clinical Commissioning Groups refusing to continue to prescribe an alternative medication for hypothyroidism causing much distress to patients, especially if they have been well on their medication for years.

This is obviously not acceptable and we want to do all that we can to raise awareness of thyroid disorders and the problems faced by people, both diagnosed and undiagnosed. Our aim is to educate more people about the thyroid and let people know how common it is and that for some people it can be an up-hill battle to get a diagnosis and get the correct treatment for them.

This year we are raising awareness by:

Publishing the results of our Hypothyroid Patient Experiences survey

Sending out a Press Release

Launching our Limited Edition Thyroid Awareness Week T-shirts

Promoting our “Let’s Cause a Flutter” Butterfly Tattoo Campaign -

Launching our Thyroid UK Trolley Coin Keyrings

Sending an Open Letter to the British Thyroid Association and the Royal College of Physicians via the Daily Telegraph

Launching our Template Letter to Your MP asking to table and/or sign an Early Day Motion in the House of Commons.

(If your MP responds to say that he is willing to help, please let us know by sending an email to )

Please help us to raise awareness and support Thyroid UK by taking part in our “Let’s Cause a Flutter” Campaign, by sending a letter to your MP, by purchasing our merchandise (including the Xmas Cards and/or enter Alan's competition! :)

The more people that help us spread the word, the more people we will have behind us to make the British Thyroid Association and Royal College of Physicians sit up and think again!


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3 Replies

  • Wow! Thanks Louise ...I am sure there are many,many of us just wanting the chance to be able to do something though not quite sure how we could help.I know that I have been hesitant myself not wanting to go off at a tangent doing something that would only represent my own thinking and not necessarily that of TUK....we need to be very careful.

    However,I have now printed out the template letter to send to my MP,something I have thought of before but not is the time! I will be contacting Eric Pickles !

    Good luck to everyone who does something ......we all need to get together on this.x

  • Thank you

  • Thanks for posting all this information Louise. Will certainly print off template letter and send to Priti Patel. Was at an Essex Carers Meeting last week and invited to make an appointment with a doctor from EssexHealthwatch to talk over my problems with thyroid treatment. They have a new helpline which should be able to put you in touch with someone who can help. Hope I now hear back from them after my contacting them a couple of days ago.

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