Upcoming American survey on Thyroid Patients ' and Doctors' Experience of Treatment and Diagnosis

Interesting seminar to be held in Orlando, Florida March 31st on this topic. A panel of experts are gathering to discuss current treatment/diagnosis/outcomes, and patient experience is welcomed. It's run by the American Thyroid Association. Hopefully the basic problems in diagnosis and treatment will be well aired here, with I hope a positive outcome. The website is:

surveymonkey.com/r/hypothyr...

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  • Another bit of info. Prof Bianco is chairing the panel. He is President of the ATA and has questioned the use of T4 only in hypothyroid therapy.

  • I tried to fill it in. But I had difficulties answering some of the questions. I treat my own thyroid and source my own meds, so am my own thyroid doctor. The questions in the survey don't really cater for that situation.

  • I think the answer is: do the best you can; it should all be logged however imperfect.

  • That was the approach I took.

    How many times have I changed doctor in order to get better treatment? With options something like 1 to 10.

    Well, never. I have seen several but that is just par for the course. And my most recent change was for another reason altogether. The real answer should be zero. I put 1.

    Maybe I would have consciously changed doctor were I not aware that so few are that much better than the low average we see.

  • I guess as this is a US based survey, they aren't taking into account that other countries have health systems that don't easily cater for the 'change your doctor and keep going until you find one that helps' option.

  • Just filled in survey, thank you for posting.

  • I would be magnificent if they received 50,000 responses from the UK! :-)

    (If the reference there escapes you, have a look here:

    healthunlocked.com/thyroidu... )

    Take that as a plea for everyone to do as diogenes has suggested - fill it in as well as you can.

  • Diogenes is going to be kept busy reading all the 'thanks'.

  • Have filled in the survey. It would be so good to have something in the UK like this survey, especially if the Medical Porfession cared about any result in our favour. Thanks for posting diogenes.

  • Yes, thanks diogenes for posting this. Finally there will be a tally for how we feel about our treatment. I wish there could have been another question related to what do we think about how we are diagnosed (i.e. what do we think about the stupid TSH/T4 method)

    Oh, and let us know how we can see the results of this survey and their conclusions.

  • I also had a problem with the questions as I now treat myself and adjust my thyroid medication depending on how I feel. I've gone it alone for the last 6 years after coming to terms with the fact that no Doctor or Endocrinologist I ever saw knew how to effectively treat thyroid disease or knew as much as I did about up to date research and to stay as well as possible meant managing it by myself.

  • Completed. Thanks.

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