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Thyroid UK
Hypothyroid Patient Experience Survey
2015

Survey report front cover

Click the links below to download the PDFs

Full Survey Report

Appendix A - Known Polymorphisms of Deiodinases DIO1, DIO2 and DIO3

Appendix B - Key Terms

Appendix D - Survey Questions

Appendix E - Full Survey Results

Appendix G – Case Study

Preface

Thyroid UK was very pleased to be invited by the Scottish Government to run a survey on the experiences of hypothyroid patients as part of a listening exercise. For a very long time, we have been concerned about the patients who are not getting diagnosed or who do not do well on the standard treatment, levothyroxine, and the problems these patients face when trying to find a way to become better.

Guidelines state that patients should not be treated with levothyroxine unless their TSH level reaches 10.

We know, from our work with patients that they are not happy and many of them are extremely ill whether they are on treatment or not. Some patients were given treatment due to their TSH being above 10 and came to us due to symptoms of an overactive thyroid whilst many patients are not being treated because their TSH has not risen to 10 and yet have symptoms of an underactive thyroid.

Many patients have told us that only a TSH test is done and that they have been refused referrals to endocrinologists. The trend of refusing patients a thyroid drug that they have previously felt well on is rising and the thyroid forums are full of patients complaining about their non-diagnosis or no choice of treatment.

This survey data was gathered to get a clearer picture of what's really happening on the ground.

The picture that emerges is one of a system where many patients are being left ill for years and, once diagnosed, are ignored in their requests for different treatments.

It is also clear that whilst many doctors want to help their patients, they are constrained by either guidelines, budget or time.

The refusal of continuing to prescribe a drug to a patient who is doing well on it and who has been able to go back to work points to poor ethics.

I am delighted that this survey provides a vital step in exposing the true experiences of patients with hypothyroidism. It is time for the diagnosis and treatment for hypothyroidism to change in order to achieve good outcomes for hypothyroid patients.

Lyn Mynott
Chair/Chief Executive
Thyroid UK

Last updated 16/10/2015