International Research - patient experiences with hypothyroidism - updated

30/11/2020

This post has been updated on 30/11/2020, with details of the finalised survey, which is now available to complete.

Thyroid Federation International (TFI) and four leading international endocrinologists (Petros Perros- UK, Laszlo Hegedus - Denmark, Enrico Papini - Italy, and Endre Nagy- Hungary) have come together to develop and implement an online questionnaire to understand the needs and experiences of those living with hypothyroidism and, in particular, patients' satisfaction with treatment of hypothyroidism and the identification of any unmet patient needs. (Please see the Research Aims and how to get involved at the bottom of this post).

TFI has agreed to provide input and assistance with recruitment and distribution of the Survey. As TFI members, The Thyroid Trust are supporting this work.

In June 2020 we shared a pilot questionnaire which consisted of a Pilot Testing for approximately 300 English speaking patients to ensure that the questions were accurate and easily understood.

The survey is for all hypothyroid patients, whatever the cause of their condition, for example:

Hashimoto or autoimmune disease
Following radioactive iodine for Graves’ disease or a benign goitre
Surgery for thyroid cancer
Surgery for non-cancerous thyroid disease
Medication used to treat another condition
Pituitary disease
Congenital hypothyroidism
Iodine deficiency

Huge thanks to everyone who very kindly took the time to participate in the pilot survey, which is now closed. Now it's time to complete the finalised version.

Please start by reading further information and begin the survey from the TFI website.

FYI we have some questions about some aspects of this survey, which we have sent to the researchers and TFI. If you'd like to share any questions or feedback you may have with us, as well as the researchers, please feel free, but it is most important that you give your views to them.

Research aims

The research will seek to explore the following key research questions:

What factors contribute toward satisfaction/dissatisfaction with levothyroxine treatment for adults (aged 18 and over) with hypothyroidism?
What are the perceived treatment barriers and enablers for successful levothyroxine treatment?
What are the unmet treatment needs of those with hypothyroidism treated with levothyroxine?
What associations can be drawn between demographics, comorbidities, personality, and tablet administration behaviours with satisfaction with levothyroxine treatment?

Take the Survey

The researchers want to hear from 10,000 patients before the end of January 2021 - please be one of the 10,000 and help shape clinicians' understanding of patient experiences of hypothyroidism!

photo by Annie Spratt on Unsplash

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Janet Butler link

16/6/2020 01:35:10 pm

Would have liked to complete this survey, but it would not let me go past what dosage of tablets I was taking.

The Thyroid Trust link

17/6/2020 03:55:22 pm

Sorry to hear that Janet, as this is a pilot survey, designed to uncover any issues people may have completing it that feedback can be used by the researchers before the finalise the survey for wider distribution. We will pass it on. Can you say any more about what happened when you cold not get past the dose of tablets you are taking, to explain the problem? We have been told by one other person that someone was unable to enter 100mcg but noone else seems to have had this difficulty. We will pass feedback to the researchers, you can also email them directly: [email protected]

Alison

1/12/2020 12:15:30 am

Is this survey just for non UK?

1/12/2020 03:18:32 pm

hi Alison, no not at all! Please complete it if you are in the UK, or elsewhere. It's an internatinal survey and the UK is included.

30/11/2020 04:15:45 pm

My apologies, but I have only just seen this answer. I have just completed the new survey and hope this helps.

1/12/2020 03:18:59 pm

Thank you Janet! Very much appreciated.

Pauline Watts

30/11/2020 06:01:52 pm

Should have also mentioned in survey..my mother and sister are hypothyroidism. My nieces have hashimotos. My daughter showing signs too...but i cant be diagnosed!

1/12/2020 03:23:15 pm

Thank you Pauline, we can't see what you put in the survey as all the answers to direct to the researchers. We'll add your comment to a list of extra comments we're saving. It sounds like you are concerned about either yourself or your daughter not being diagnosed but having symptoms? British Thyroid Foundation operate a telephone support helpline that might be able to give you some good advice. Unfortunately we're too new and small to have a helpline, but would advise you to seek a second opinion if you are not satisfied with what you're being told, Different doctors often take a different view on the best course of action with thyroid patients so it's always worth seeing more than one if you're not getting what you need from the one you see regularly.

Helen

1/12/2020 03:45:01 pm

Having spent 50 years battling for 5 family members the total lack of understanding about GENETIC Hashimotos is appalling

Sharon

30/11/2020 06:13:06 pm

No options to enter the survey as my doctors won’t give me anything for my thyroid as I can’t take levo. So suffering with high TSH of 38. And now my cholesterol is very high.

1/12/2020 03:25:30 pm

Sharon, that's very concerning to hear. We have noted your comment and will pass it anonymously to the researchers. Are you aware that the NHS says that T3 should be available to any patient who can't take levothyroxine? There's lots of info on our website that might help you, if that's what you think you may need. You can also contact the British Thyroid Foundation Telephone Support Contacts if you need to speak to someone. https://www.thyroidtrust.org/t3-news-and-resources.html

1/12/2020 03:47:28 pm

Thats absolutely apoalling ...its got to be recognised that a GENETIC group simply cannot tolerate levithyroxine or T3 yet are completely well on NDT ...its a breach of human rights ....my life on levothyroxine was not worth a candle but on NDT i am totally fit and well

Elaine Maunsell link

30/11/2020 11:22:11 pm

I do have underactive thyroid. I also have lots of other health issues 😕 and its not a great 😕 combination of health issues to deal with every day & its such a hard slog each day that I wake up

1/12/2020 03:27:11 pm

So sorry to hear this Elaine. Many of us have more than one condition and that can make it hard to get the right combination of treatment to restore wellbeing. We wish you better. You're not alone! this research will hopefully help many patients. warmest wishes from the Team here.

Janet Thomas

1/12/2020 06:32:23 pm

I completed your survey yesterday. However, in retrospect, I wish I hadn’t. The survey was poorly written and did not allow me to convey an accurate picture of my situation. I have received totally inadequate treatment post-thyroidectomy, and have always been under-medicated by doctors, with a lot of pressure to reduce my medication. This led to me studying the facts, and finally self-medicating with Liothyronine in addition to the dose of Levothyroxine that I have always taken. I control my treatment myself as I have not found a doctor with the knowledge and skills to do this. The situation amounts to medical negligence in my opinion, and harm is being done to thyroid patients on a daily basis. You need to research patient experiences with open questions before you can formulate a questionnaire that can give useful results. I’m afraid that your current questionnaire will givecseriously misleading results.

1/12/2020 10:23:28 pm

hi Janet, it's not our survey. We must emphasise that, we did not set the questions, we're simply sharing it to give patients the opportunity to share their experiences with the researchers in the hope that the findings will ultimately help us all. Thank you for your comments. We are a patient led organisation and we are acutely aware that very many patients are not being treated well and harm is being done to many lives, we are trying to make things better. We will feed your comments back to the researchers and keep them on file with the aim of influencing - perhaps even conducting our own - future research. We are a new charity, established less than 18 months, facing a huge challenge and determined to help bring about positive change. We believe that patients and doctors need to work together and can learn from each other. We are developing a registry of patient experiences which we hope can be used to help inform future research - if you could bear it we'd be grateful if you would like to submit your story to that - and also welcome feedback on whether that feels more comfortable to do https://www.thyroidtrust.org/submit-your-story.html

2/12/2020 08:14:45 am

Thank you, I will do that.

Maggie

1/12/2020 09:00:19 pm

Entered my levothyroxine dosage, 125 mcg, the site wouldn’t recognise it so I was unable to continue.

Kaz

1/12/2020 09:15:43 pm

I feel the questions at the end were a bit bias and as on T3 mono I find that taking my temp lets me know my Thyroid is right if temp is too high then on too much T3 and same too low not on enough, I feel in summer I have needed less t3 and that was due to temp I discovered this , so I feel that when they say its false they are showing they do not understand the actions of taking T3... the question on Adrenals is questionable . My Answer to that is. I have never got on with Levothyroxine and in 16 years not once did any GP test my Cortisol I did a saliva test whilst still having some levothyroxine with add T3 to where I had slightly more energy so was probably much lower when taking T4 mono the saliva cortisol came was well below range ,my GP said we dont take notice of saliva tests but would give me a serum cortisol test this came back at very bottom of the range 140 nmol the bottom number on range so the saliva test was correct I am being investigated for Addisons now The GP said was probably years of badly treated thyroid that has caused it hes more intelligent than most GPs.. so to me the Adrenals are questionable and as GPs do not know anything on Adrenals why would they test them I have had a GP say he will not test them as doesnt understand the result I have had to tell him I understand them so please test them So again this answer they say they are not connected is wrong as they both work together I would think those who can not tolerate T4 have some sort of adrenal issues!
and the fact one auto immune could lead to many others shame Drs dont know that I only found out 30 years after having Graves as no GP had told me... And also as the other thing I see the Survey seem to have missed out is the Dio1 and Dio2 genetic thyroid that where people who have that do not seem to get on with Levothyroxine and most need an add of T3 .. so imo this survey is missing vital things about the Thyroid and adrenals .. I feel if they are going to do a survey they need to get a few more facts right.. Please tell them the only reason adrenals are not picked up on as GPs have not got a clue and the fact BMJ had an article stating that the adrenals should be tested before starting people on T4 .. Im sure the BMJ wouldnt publish something thats not true ! it just seems to have not been picked up on in the medical world of Endocrine >> Sorry I have been a victim to ignorant GPS so feel quite strongly on all of it I have done much research and probably know much more than most Drs do even most endocrinologists do.. I feel that the survey has been bias with those questions and answers and wish I hadnt filled it out to be honest as can see the using this against us with hypothyroid and not helping.. I didnt think to put in comment box all of this maybe you could pass it on to them Thank you :)

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