Hypothyroid Patient Experiences Survey

[lynmynott]

Thyroid UK has been working on an important new project over the past couple of months and we are now ready to let everyone know about it.

We were invited by the Scottish Government to work with them on a listening exercise to learn more about patients' experiences in respect of the diagnosis and treatment of hypothyroidism.

The Scottish Government were asked to look into how patients were diagnosed and treated by the Scottish Parliament Petition Committee under the petition lodged by three Scottish petitioners. Two of the petitioners stood down leaving Lorraine Cleaver as the only petitioner still involved - PE01463: Effective thyroid and adrenal testing, diagnosis and treatment.

The listening exercise is taking place via a survey that will be placed onto the Thyroid UK website, our HealthUnlocked forum and our Facebook and Twitter pages.

It will also be sent to all Health Boards in Scotland and Wales, the Northern Ireland Health and Social Care Trusts and all Clinical Commissioning Groups in England via their twitter pages so that more patients can access the link.

It is well known that 5-10% of patients (possibly more) do not recover fully on the standard medication given for hypothyroidism and we hope that the results of this survey will give some clues as to why this is and subsequently lead to a change in the way thyroid disease is diagnosed and treated in the UK.

We are asking questions such as how long patients had symptoms for before being diagnosed; how many times did they visit their GP before diagnosis; how much are patients spending on private consultations and were patients refused certain thyroid hormone medications even though they made them better.

The survey is open to anyone who has hypothyroid symptoms residing in the UK (excluding the Channel Islands due to not using the NHS system) and is completely anonymous.

The survey takes approximately 15 - 20 minutes to complete and participation will contribute to improving care and support for people with thyroid disease across the whole of the UK.

Thyroid UK is grateful to Wicked Minds Healthcare Consultancy and Healthbox360 for their strategic advice on the content and flow of this survey.

Please participate in this survey and help us spread the word by placing the link on any thyroid forums, Facebook and Twitter pages you go to.

You can also help by downloading the Poster to place in your doctor’s surgery or endocrinologists clinic. This poster will be available on our website on Monday - thyroiduk.org

To participate in the survey please go to: surveymonkey.com/r/JBD52TV

For more information about the Scottish Parliament petition please go to: scottish.parliament.uk/Gett...

Let’s make this survey a successful one!

[shaws]

Congratulations Lyn to you and your staff and Lorraine. The strain was too much for the other petitioners I am sure, due to the fact that I don't think they've yet fully recovered.

I am also confident that the Forum members will be delighted to complete the survey.

Thank you.

[Trixie64]

Thank you for this survey, which I've just completed.

[Marz]

...I would love to take part but do not live in the UK. However after over 40 years of illness - over a dozen major surgeries - I was only diagnosed with Hashimotos in 2005 having moved to Crete in 2004. It pains me hugely to read all the difficulties people face - and wish the UK could have the free wheeling system we have here.

I tried the T4 route - then the T4/T3 one and am now T3 only. I am so grateful to the Greek system that allows you to manage your own care. Docs here are lacking in up to date knowledge - so we need forums like this to share information and keep us up to speed They are not offended when you come up with something though.... we have always been treated as equals. When hubby saw the local GP - she replied - I cannot tell you anything - you live with Dr Thyroid And yet I still have much to learn !

With all my health issues over a long period of time - I was only diagnosed with fibro on top of the Crohns/TB issues. No-one interested into looking deeper and my thyroid was never tested....

Wishing you success with the survey....something needs to happen to make a difference. I appreciate the hard work involved......thank you....

[LouiseRoberts in reply to Marz]

Thanks Marz - sorry you were excluded, there are an awful lot of Qs about NHS care.

L

x

[nightingale-56]

Do hope this survey gets us all somewhere good. I have completed it, but found some questions awkward to answer because of not coming at this problem from a straight Hypothyroid state, so hope I have given some useful answers. Do feel treatment nowadays is quite dangerous to us all.

[lynmynott Partner Thyroid UK in reply to nightingale-56]

Thanks j-bee, it was so difficult constructing this survey. We actually took out a lot of questions because we wanted to ask ALL the relevant questions. We were advised though to ask only certain questions for this survey, some of which were exact questions that. The Scott Govt wanted answers to. We did try to add in questions about hyper people but then it made the logic on the technical side extremely difficult. We thought people would use the "other" box if they couldn't answer the questions. We r going to add something to the intro tomorrow to explain a bit more.

Learning curve!!!!!! 😀

[Musicmonkey in reply to nightingale-56]

I found it difficult too j_bee. Certain questions didn't quite apply in the way posed.

[LouiseRoberts in reply to Musicmonkey]

Please see Lyn's reply - above!

x

[SilverAvocado in reply to Musicmonkey]

Just completed it today and I had the same problem. Several of the questions didn't have an 'other' response, and wouldn't accept no response at all, so I had to add a misleading answer.

As there is filtering in the survey, I wonder if it would make sense to ask as the first question "Are you hypothyroid because of a thyroidectomy or RAI?", and then whizz those people past a lot of the questions about the early part of diagnosis. Actually I think a similar question is asked much later, as I'm sure I ticked 'thyroid cancer' somewhere in the middle of the survey.

Another option would be to put those questions that a lot of people will not be able to answer at the end, rather than the beginning. That was people are less likely to give up because they have already seen the relevant questions.

[lynmynott Partner Thyroid UK in reply to SilverAvocado]

Hi SilverAvocado,

We added something to the introduction to ask hypers to persevere with the first questions. Not sure if you saw it. We did look at the questions again this morning and felt that there were options for people with hyperthyroidism. Perhaps we need to add another sentence to try and make it clearer.

Can you tell me exactly which questions you had a problem with? Perhaps I can send you a pdf of the whole survey and we can go through it with you?

[SilverAvocado in reply to lynmynott]

Thanks Lyn! I'm going through it now:

Q 5 and 6, which are "before you were diagnosed with hypothyroid how did your symptoms...", and "how long after you had symptoms were you diagnosed."

Because I had thyroid cancer, I went from being euthyroid one day, to having no thyroid and being hypothyroid the next. So there was no before being diagnosed. Coincidentally my partner is in the same situation because he has a congenital condition that was diagnosed shortly after birth.

Neither of those questions give an option to skip or an 'other', or a zero length of time.

Q 8 again asks about medicines you were prescribed before your diagnosis. In my case I could squeeze to make this fit because I had my thyroid removed in 2 separate operations, a month of so apart, and in between the two my endo agreed to prescribe me Levo even though she said my blood test was fine. But then I went through to Q 9, which asks what the medicines were, and there are no thyroxine medications on the list, so I think I interpreted the question wrongly, and so my responses are just creating inaccuracy.

That could maybe be avoided if it was possible to give a 'zero' answer to Q6 'how long did you wait before diagnosis', and then put a filter on being asked any additional questions about things that happened before your diagnosis.

I think after that it worked fine for me and the questions all felt like things I could answer.

The biggest problem is Q 5 and 6, because they were early in the survey, and gave me a question I had to give a wrong answer to get on to the next page. Looking thought I think there are several other questions that feel a bit strange "How many times did you visit your GP before diagnosis?", and I answer Zero. But I think those felt more 'weird' as I was going through and had already had to skip a question.

[SilverAvocado in reply to SilverAvocado]

Thinking about it, I think a solution would be to ask Q 6 "How long after symptoms were you diagnosed?", give an option of 'immediately', or something like that, and then filter off that whole batch of questions, including Q5.

Actually Q 13 kind of asks this, "was your hypothyroid diagnosed by thyroid testing", and one of the options is "no, I had a thyroidectomy". Because obviously anyone who had a thyroidectomy would not have been hypothyroid prior to that? If we can assume that?

Sorry, I know these filtered tests are really hard to set up! I have designed several surveys but they were always on paper, so there would just be a lot of 'not applicable' answers.

[lynmynott Partner Thyroid UK in reply to SilverAvocado]

Hi, We are looking at it as we speak. We have added an introduction now to try and make things clearer. We are looking at adding another question in but are checking it won't change the analysis too much...

[lynmynott Partner Thyroid UK in reply to SilverAvocado]

Hi, We have now made some changes that we hope will make things a bit easier for those that had RAI etc.

[SilverAvocado in reply to lynmynott]

Thanks so much, Lyn. Sorry to be a grumpy grump!

[SilverAvocado in reply to SilverAvocado]

Before I got ill I was a sociologist, and did a lot of research design. I would offer to help out, except that I'm too ill to work at the moment and not very reliable.

You can tell by how long it took me to do this reply

[lynmynott Partner Thyroid UK in reply to SilverAvocado]

No problem!

[Spareribs]

Thank you for the survey Lyn, Lou & co

I've done it and would ask everyone to take the time to do it - it's easy to do - hopefully we will make a difference as we are beginning to be heard - thanks to Lorraine and everyone! (no longer being "treated as children" as Malcolm Kendrick points out).

(I couldn't see one thing that I was prescribed before HypoT diagnosis, roprinirole for tremor wasn't on the drug list). Jane x

[LouiseRoberts]

Thanks for your comments.

[Poshpenny]

thank you to you and your team Lyn for doing this, I've responded to the survey via FB.

I would just like to comment because there wasn't really the right place to do so on the survey that I believe the problem with the NHS is that it is all a numbers game, and symptoms seem to be completely ignored, let alone putting two and two together and considering hypothyroidism. Not ideal when most of us lose our ability to be articulate and respond sufficiently well, fast enough when we're in the depths of this hypothyroidism, well I was at any rate. Yet my then GP was happy to diagnose carpal tunnel, tennis elbow etc etc yet wouldn't put other things into the equation to consider my symptoms (including low FT4, calcium and ferritin) might possibly be due to hypothyroidism. I'd been reading too much rubbish on the internet apparently.

The BTA guidelines on their web page seem to be taken as Gospel by all the endocrinologists I've come across when they are just guidelines, the gps operate to a computer generated script and seem unwilling/unable to deviate from it to act in the best interests of their patients. T3 is prescribed by some endos against their own BTA guidelines costing a ridiculous amount because the NHS purchasing department is happy to let itself be ripped off and pay about 10 times over the market price in other EU countries. yet NDT continues to be seen as the work of the Devil when it seems to be the one that works best for most of us. I am sure the survey results will bear that out. Thank you once again for doing this, it will be interesting to see the results when you have finished collating the replies.

[LouiseRoberts in reply to Poshpenny]

Thank you for your comments.

L

x

[crimple in reply to LouiseRoberts]

Louise I have completed the survey and thanks to all at Thyroid UK for all that you do to try to improve our healthcare within NHS.

Thought it might be worth mentioning that Q44, last on the survey is where we have our chance to "have our say". I mentioned private testing, Vit and mineral levels and thyroid UK being the reasons that I have improved my health in spite of local health CCG and endo only testing TSH (the gold standard!!) NOT and saying there is no treatment for TPO antibodies.Sincerely hope that this survey will help put some cracks in the wall of NHS poor treatment.

Thank you.

[LouiseRoberts in reply to crimple]

Thank you!

xx

[punkyb]

I got this done now! yay!

[lynmynott Partner Thyroid UK]

We think it's more than that too but to have the survey accepted by the medical profession so that we can actually be invited to a discussion table, we were advised by an endo to stick to figures found currently in evidence.

[Laine]

Thank you for your continued efforts to Change the way Thyroid patients are treated.

I have completed the survey, but I had difficulty with it as I was diagnosed but not treated for 10 years and all the other diagnoses I was given were during that ten year period. There wasn't an option covering this.

Most of the other things I was dianosed with cleared up once on Thyroid meds.

Still seriously I'll and looking for answers, thanks to Thyroiduk/ Healthunlocked at least I know it's not all in my head as my GP has more or less said.

Thank You

Lorraine.

[nightingale-56 in reply to Laine]

Like you Laine, I was not treated for 19 years and was very ill during this time. All this suffering gets pushed to one side though.

[Laine in reply to nightingale-56]

J_b Sorry for the delay in replying, I,ve just read your profile and it looks like you,ve been to hell ! I,ve just about given up on the NHS they don't seem to be able to get anything right when it comes to Thyroid disorder.

I,ve been avoiding going to doctors as I know that as soon as I do they are going to reduce my T3 by 50% based purely on TSH /T4, they have not even tested the FT3.

Have now ordered some myself and just have to hope that it arrives and that it's genuine .

The only option we are left with is to keep reading/researching trying different things, vitamins/supplements ect and when possible sharing our experiences in the hope that those that come after us won't have to endure the same pain and misery that we have had to suffer.

Wishing you well on the long road ahead.

Lorraine.

[topaz1]

Thank you Thyroid UK for all your efforts. Have completed the survey and will be very interested in the result and what happens after that!

[lucylocks]

Just completed the survey.

[Barb1949]

I have just completed this survey thank you. I hope it does help.

I read the Scottish Parliament site about this and see that Prof Graham Leese is part of the panel. I am now even happier to be seeing him myself.

Barb x

[Sewnsew]

Just completed but came across it by accident!

[LittleTom]

Thank you Thyroid UK for working hard to get this survey out there to patients...

I have completed it and added a long 'comment' in the last box. I wanted to get across how annoyed/bitter I am about how we are treated. Many years of working out why I wasn't well (whilst bringing up and missing out on special family moments due to fatigue etc) Never actually being told I had an autoimmune condition! (still don't think my Gp does know!!). Thankfully I am on the NDT road and levothyroxine will not pass my lips again!! At last I feel empowered, all from my own research, finally finding a wonderful specialist and support from here and other groups. I pray that this gets us all somewhere.

[flatfeet1]

Hi Lynn, a great survey and desperately needed.

I have just finished completing this but then realised I wanted to expand on my comment that in many months of trying to convince doc to see an endo and eventually getting an appointment only to see a diabeties specialist so had to start the process again (lesson do your research before), is there a way to go back or to add this please ?

[lynmynott Partner Thyroid UK in reply to flatfeet1]

Hi, You should be able to go back in again as long as it's on the same computer. We set it so that people can go back in and update. Let me know how you get on. Lyn

[flatfeet1 in reply to lynmynott]

Thanks Lyn, will let you know.

[flatfeet1 in reply to lynmynott]

I've changed my comments, it was really easy. Thanks

[Mauds]

Would love to help but I live in Irelnd wish our gov would do something like this.

[Thalia56]

How much longer will the survey be open for,please? I have another medical appointment coming up in ten days time and expect I will have more information to share after that, though if it conflicts with the cut-off I'll go ahead and do it now.

Thank you SO much to everyone involved for pushing this forward.

[lynmynott Partner Thyroid UK]

Hi Impala,

The survey is due to close on 9th August so you may have time... Lyn

[Thalia56 in reply to lynmynott]

Sorry for the delay in replying, Lyn - I didn't get notification of your answer. I'll be sure to complete the survey before August 9th, whatever the status of my appointments. Thanks for letting me know.