People's Experience with Thyroid Disease Survey

[lynmynott]

Two Professors of Economics, Prof. Catia Montagna and Prof. Alexandros Zangelidis from the University of Aberdeen have been working on a project on the implications of thyroid diseases on wellbeing and labour market outcomes.

Their research so far finds that undetected hypothyroidism widens the gender wage gap as women suffering from the condition receive lower wages. However, diagnosis (and therefore possible treatment) of the condition helps female workers recover such losses.

This research has important implications for public health as it emphasises the importance of being tested for thyroid dysfunctions and calls for a deeper understanding of the consequences of hypothyroidism.

The recently issued Women’s Health Plans in England and Scotland make no mention of thyroid dysfunction as a condition that disproportionally affects women and therefore contributes to wellbeing and labour market gender disparities.

As part of this research project, they are now in the process of collecting further data on thyroid patients’ experience from the onset of symptoms to diagnosis and treatment and the role and relationship with healthcare professionals as well as employers with the aim to inform relevant policy debates and interventions.

Thyroid UK feels that this piece of research is very important and so have agreed to assist in this research by recruiting thyroid patients for this survey.

The survey is fully anonymous and you can withdraw from the study at any time during survey completion.

To participate, you must reside in the UK, be aged 18 or above, and have been diagnosed with a thyroid condition. Further details on research management and ethics can be found in the opening page of the survey.

The survey closes on 7th April 2023

To participate in the survey please click this shortened link - tinyurl.com/488sz4hj - or scan the QR code in the image.

[jimh111]

I am disappointed with the survey as it just collects numbers with no opportunity to detail the extent of harm caused by inadequate thyroid care. Earlier today I sent the following email to the professors:

Dear Prof Montagna, Prof Nangelidis,

The proposed survey is of little value. It collects numbers which give no sense of the scale of harm suffered by thyroid patients. Easy to analyse but little use to patients.

Patients have no opportunity to describe how they are affected. Whether they have lost their jobs, their home, their partner due to inadequate care.

The good doctors are hounded by the endocrine establishment. Dr Gordon Skinner suffered a fatal stroke as a result of constant intimidation by (mostly unnamed) endocrinologists and the GMC. Dr Sarah Myhill was brought before the GMC 36 times, each time she successfully defended her case. She resigned her registration yet the GMC ‘successfully’ prosecuted her on the 37th attempt when she refused to attend a body she no longer belonged to. The GMC, a Kafkaesque body, chose to ‘suspend’ a non-existent registration!

If you wish to be of use I suggest you modify your survey to allow for a few brief comments that describe the actual harm thyroid patients have suffered.

In my case I have had 35 years of ill health, pain and suffering. I had to take early retirement at a net cost of £250,000. My medication has recently been taken away with no regard for the consequences. I’ve reported the consultant, Prof xxxxx xxxxxx at Charing Cross Hospital, for failing to carry out any monitoring, making multiple false statements and achieving ‘success’ by falsifying patient records.

Collecting numbers is of little use, the data is easily ignored. I suggest you undertake a useful survey; it will involve more effort than just adding up a few numbers.

Jim Harwood

[BiscuitBaby in reply to jimh111]

HiI did the survey just now. I agree with your assessment. There is no scope for comment or explanation. I got worse after I was put on thyroxine! The questions about being involved in decisions in treatment etc are useful but I wonder if the people who need to know will ever be bothered to read the results. It's being done by school of economics and given that most doctors think thyroid patients are fine if their tsh is under 5, are they going to be interested in reading a paper produced by economists! My doctor told I was nearly 45 now so I "might just have to learn to live it". This was after I told him I was sleeping 18 hours a day and I felt like my body was dying! Can't see him reading this paper any time soon!!!

[Framboise in reply to jimh111]

Hi Jim, I like your letter, I wonder if they'll take note of it! Let's hope so.

I completed the survey by using "Other" wherever it was, and I managed to include degree, original career, symptoms that my GP recognised, blood test results that my GP didn't understand, lack of diagnosis and treatment for 8 years, spiralling illness, permanent loss of career, inability to join in as much as I had hoped with my children's lives from the ages of 8 - 20, huge emotional and financial loss, gradual slow recovery, current NHS lack of recognition or treatment, and ensuing, ongoing cost to me, etc.

I doubt they will have expected to hear the stories many of us in this group will have, and I hope they don't simply categorise us as being overly-dramatic. It might help if they had a means to contact us for further details, but they stress the anonymity of it, and are economists rather than doctors, I have however requested a copy of the final report.

[jimh111 in reply to Framboise]

Thanks. I'll take another look and perhaps use 'other' extensively. A high proportion of other replies would be effective.

Looks like you blew a raspberry at their survey !

[Framboise in reply to jimh111]

Yes I did! I got everything in by adding bits when they asked such questions as "which symptom was the worst?" I wrote that no one symptom was, went through several and then explained the knock-on effects each one had, especially on my ability to concentrate enough to work. Mine may not be the concise answers they hoped for but they were at least realistic.

[Regenallotment Ambassador]

Thanks for the heads up, I used the ‘other’ box to record more details, it’s sad you can’t split NHS treatment and private self funded self researched treatment, maybe that doesn’t exist.

[tattybogle in reply to Regenallotment]

me too , did it a few days ago and had to make quite liberal use of the 'other' box.

Scope of the actual questions was pretty limited, and didn't allow for any distinction between what happened in the longer term after diagnosis /treatment ie. i got better following diagnosis treatment , but never better enough to resume full time paid work .. or where wobbles in treatment/ inappropriate or unhelpful dose adjustment from GP's following NICE guidelines about TSH have subsequently led to further los of work capabilities/ income/early retirement from some roles.

[asiatic]

Thyroid Disease and its effects on the female workforce is an interesting and valid line of research. However, I feel this Questionnaire too simplistic to achieive meaningful results. Even using the OTHER box I found many questions impossible to answer or my answers misleading. I am in the middle of writing an email to the Profs. - it could take a while - but feel the need to write down my experience of the realities of being treated with a thyroid disorder.

[jimh111]

I received a reply from the professors. As it was a personal communication I won't quote it here but basically they are aware of the limitations and as economists they see this as a first step of a long term project. On this basis it seems right to try and be helpful so I have filled in the survey whilst using some of the 'other' options to point out the severe nature of my hypothyroidism and the extent of its effects.

[tattybogle in reply to jimh111]

i emailed them yesterday (after filling it in)... i shall look forward to their reply .

[tattybogle]

i emailed them some feedback after filling it in re. survey not giving enough scope to explain full impact of ongoing poor treatment following diagnosis on patients working lives etc , got a response today so thought i'd stick it here :

Dear ... tattybogle,

Many thanks for your email. Your points are very well taken. I am a Hasimoto’s sufferer myself and am aware that the current survey cannot capture the complexity of patients’ experience with thyroid disease.

When we approached this line of research we realised that there is very little work done on the effects of thyroid disease on patients – at least on wellbeing and labour market aspects, which is what we are particularly interested in as economists. We also became aware of important data limitations. We therefore decided to set up a long term project to overcome some of these gaps. This survey is just one step in that direction. Judging from the responses thus far, important evidence is going to emerge from the analysis of the survey data that can be used to draw the attention of the medical profession and policymakers to the nature and the consequences of the problems encountered by thyroid patients and inform relevant healthcare policy debates and initiatives. Hence we hope that there will be a good response from patients.

Many thanks again for getting in touch and for sharing your experience.

Kind regards

Catia

Professor Catia Montagna | Jaffrey Chair of Political Economy | Fellow of the Academy of Social Sciences

[asiatic in reply to tattybogle]

I received the same reply as you after sending in my own case history and the reasons I found the questions difficult to answer. I welcome this research. The words long term were used. I am resigning myself to the realisation change will not come in my lifetime and resolve to advocate for myself and what I know from experience I need to keep me feeling well.

[Ukie]

I agree with what everyone else has said. For example, I had to say symptoms improved within one month because they did, but they very quickly deteriorated again until the dose was increased, and I didn’t see a place to say that. The doctor who diagnosed me started me off on 25mcg. When I asked for a higher dose after they symptoms returned, he said “OK I’ll let you try 50mcg, but I’m not going to increase it any further so don’t ask!” There was no place to raise issues like that!

[joey82]

Completed the survey.