Thyroid UK Hypothyroid Survey

Thyroid UK is working with the Scottish Government on this survey which is part of a listening exercise to learn more about patients' experiences in respect of the diagnosis and treatment of their hypothyroidism. We hope that the results will lead to a change in the way thyroid disease is diagnosed and treated in the UK.

We want people who were hyperthyroid to take part in this survey too because we are very interested in how you were treated after you became hypothyroid due to RAI or thyroidectomy.

It may seem that the first few questions are not relevant to you but please persevere as later questions are very relevant.

If you're in the UK please spare 15-20 minutes to do cpmplete the survey. Feel free to share the survey on Facebook, Twitter and other social media :)

surveymonkey.com/r/JBD52TV

10 Replies

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  • Clutter

    sadly the survey actually needs a few more questions to give a better understanding because it does not ask what meds you have tried and how they affected you

    it only asks what you are on

    it does not ask whether you have central /2ndary hypothyroid

    I could go on but as it stands it misses vital bits

  • RFU, The survey whittled down the numbers of questions to those asked by the Scottish Parliament and a few others. It was originally longer taking about 45 minutes to complete.

    Distinguishing between primary, secondary and tertiary hypothyroidism isn't necessary for the purposes of the survey although getting a diagnosis maybe a much longer process for those with secondary/tertiary. Thyroidectomy makes one hypothyroid overnight and RAI does the same or induces hypothyroidism in weeks or a few months. There's less likely to be a build up of long term undiagnosed hypo symptoms for the latter two.

    There are questions about which meds people use/used and whether they are/were prescribed by NHS or private clinicians or self funded and self medicated.

  • It took 6 solid years and me asking more than once "are you sure he is not hypothyroid " to get my husband diagnosed hypothyroid after surgery solely because no one recognised the plethora of symptoms including myxodeama madness against a TSH of 2.9 and a free t4 of 19 .............why ?

    Because the old Swedish research which proved that after Graves disease the body cannot ever again function on "normal levels " has gone missing

    It was pure luck and a lot of table banging from me we got to see the top ME specialist and a top teaching prof who recognised the symptoms ...left to my husband he would have been dead

    Add on Central Hypothyroid and no one gets diagnosed

    He so nearly lost his job and his life and with it our entire lives thanks to the above so I think I know more than most .

    As for survey length if it needed 45 minutes to get full truth then that's what it needed

  • Clutter I think I have done this already.

    Is this possible?

    Pp

  • PP, yes it's the same survey. This post is for anyone who hasn't already completed it.

  • Hi Clutter,

    Have completed survey with no probs. Yes there could have been more to it but ANYTHING that can help us and up and coming thyroid sufferers is a great thing. 10 years of being ill because of toxicity (meds) and NHS endo refusing to believe me makes me say let's have more surveys. Every month if needs be !!

  • Thank you, Turquoise13. My endo told me Levothyroxine couldn't cause the adverse effects I suffered. I spent 3 months on T3 only and cleared the T4 build up and I'm well now on T4+T3.

  • Hi Clutter, I definitely want to contribute to this survey but have been putting it off as I have another GP appointment coming up and I expect I will have more information to offer after that. Do you know for how much longer the survey will be open, please?

  • Impala, I'm sorry I have no idea. Perhaps you could email louise.warvill@thyroiduk.org.uk and ask her :)

  • Thanks, Clutter - will do. :)

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