Thyroid UK - Results of their in depth survey:

Thyroid UK undertook a huge survey on Hypothyroidism, this is terribly important, as often people are not tested, the TSH test is not reliable, also there is a lack of choice for full testing and also a choice of medication. So many people with autoimmune problems and Hughes Syndrome end up with a Thyroid problem. This is quite a long and detailed survey and one which I embarked on doing myself the minute it was up on line.

It is a fantastic piece of work that they have done, and I hope it will help bring about change.


9 Replies

  • As with most illnesses it seems Drs need to listen to their patients and not presume they are right. An interesting article very informative.

  • Thanks, I am glad I took part, it is through Thyroid UK that I educated myself in the right direction. MaryF

  • Hi Mary, I asked my GP if I could have hypothyroidism, he said I have been tested 8 times in the past, I asked him if I had been tested for T3, his answer was we only do that if the T4 is out of range, I thought this was wrong. I haven't got the strength to argue anymore. Hughes syndrome has taken it all out of me.

    I have all the symptoms of hypothyroidism any suggestions please

  • I am sorry, it is the same for so many of us or we are told it is 'FIbro' or 'their age' or 'the menopause'. I did some private tests, and regularly still do. I can only suggest you see a different GP or do some alternative testing. MaryF

  • I still remember how long it took my mother to be diagnosed in the 1960s and how bad she was. I can understand why it is misdiagnosed in the early stages as many of the symptoms are similar to fibro which I have but not in the later stages. Mum's heartbeat and pulse were abnormally slow and she was suffering from breathing problems alongside other symptoms. In those days it was often diagnosed by a locum GP. Fortunately me and my sisters have not inherited the thyroid problems.

  • Good for you. MaryF

  • Mary how do we get tested for this, I've had my levels tested and they say it is OK,but funnily enough a friend of my mother in law has been working alongside a controversial researcher for years and he was 'hushed' and ridiculed and researching funding taken away,but he was in fact ahead of the game and believed a lot of people had problems with thyroid and said a long time ago that doctors weren't looking at the right results,and testing wasn't taken seriously enough. I don't know enough about it but he was famous and has since died x

  • Join Thyroid UK on this platform, you can use same log in and also name.. and their actual charity pages carries up to date information of how to get tested. There are two companies, which I will not list on here as it goes against guidelines... but the clue is I did a finger prick test, it is a scandal, nationally so, that even when doctors request the more detailed testing, including T3 and Reverse T3 it is ignored..... the charity is linked to this platform like we are on here... They carry modern and up to date information.....


  • Thanks Mary x

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