People's Experience with Thyroid Disease Survey Results

[helvella]

I was sure someone had posted this - but can't find it! I know there were several posts about the survey, etc.

People's Experience with

Thyroid Disease

Survey Results

Catia Montagna and Alexandros Zangelidis

Centre for Labour Market Research (CeLMR)

May 2023

Executive Summary

Relatively little evidence exists about the

impact of thyroid dysfunctions on the

wellbeing and labour market outcomes of

those affected. Previous work by the

authors highlighted how undiagnosed

hypothyroidism can widen existing gender

disparities in the labour market.

This survey of people with thyroid

disorders was carried out to collect

information on patients’ experience from

the onset of symptoms to

diagnosis/treatment and on the effects of

thyroid disease, before and after

diagnosis/treatment, on their wellbeing

and labour market engagement.

• It takes on average 4.5 years for a

thyroid condition to be diagnosed.

• Thyroid treatment does not appear to

be always effective, with symptoms

persisting after the start of treatment

and with some patients never feeling

the benefits of treatment.

• The diagnosis of hypothyroidism takes

longer time and people with

hypothyroidism have lower levels of

satisfaction with treatment.

• Thyroid disease has lasting adverse

effects on people’s wellbeing and labour

market engagement, with only

moderate improvements after the start

of treatment.

• Patients on average do not feel they are

being heard by the medical profession

and do not feel involved or empowered

during their medical journey.

• Dissatisfaction with involvement and

empowerment is greater for patients

suffering from hypothyroidism.

• Patients feel more involved and

empowered when diagnosis is made by

a female consultant.

• Results highlight importance of timely

diagnosis and support for patients.

abdn.ac.uk/news/documents/T...

[BB001]

Thank you for posting. I think I contributed to this survey. It's good that it's highlighting to the medical profession that the [conventional] thyroid treatment isn't working for many. However it's only saying what the people on here already know from lived experience. Of course it has an impact on the career prospects of patients if the treatment for their hypothyroidism isn't working. They would have known this decades ago if they had listened to their patients.

[tattybogle]

Thanks Helvella .. i'd forgotten about doing this survey .

[tattybogle in reply to tattybogle]

i'm pleased with that .. Some of us emailed the authors at the time with concerns that the survey questions did not allow enough focus on our remaining difficulties following diagnosis / treatment , and they assured me that they were aware of that aspect .

I think they have done very good job of conveying that for a great many patients the problem is improved but not magically fixed by treatment .

i wonder how big a cat this puts among the pigeons re. "Levo works perfectly well for most people and only about 15% are dissatisfied" .....

[helvella]

I had meant to add a link to their latest news article:

The majority of thyroid patients still suffering years on from diagnosis

25 May 2023

The University of Aberdeen

Even once treatment has started, research shows 92% of patients still experience multiple symptoms

Diagnosis is only the start of a lengthy journey for the majority of thyroid disease patients, according to new research exploring people's experience of living with the condition.

Marking World Thyroid Day on 25 May, researchers at the University of Aberdeen have released the findings of a survey which shows that after waiting years to secure their diagnosis, more than 90% of adults still experience symptoms after receiving treatment.

Rest of this freely accessible here:

abdn.ac.uk/news/17040/

Screenshot of major claim of 92% still suffering

[Wua13262348 in reply to helvella]

Thank you so,so much for this Helvella. You are an absolute star. I am in Scotland and due to have my first Endo appointment in July in a Health Board who refuse to prescribe T3, even though obliged to offer a trial. Love, love, love that this is a Scottish study. I will definately be quoting this . Also love that it is so current and up to date as dated just a few days ago. If my Endo isn't aware of this, be assured he soon will be. I expect to be told I don't need levo, definately won't want to continue liquid levo , and won't want to consider trying T3. Are the 8% who do feel well on T3 by any chance? Very much appreciated. Keep up the good work.

[helvella in reply to Wua13262348]

The stars are definitely the authors of the report!

[Wua13262348 in reply to helvella]

Take a bow anyway!

[tattybogle]

jimh111 the report from this one may go some way towards alleviating the irritation caused by 'that other survey'

[jimh111 in reply to tattybogle]

The other survey was a formal study that claims to show thyroid patients somatize symptoms. They essentially use a set of questions that included lots of thyroid symptoms. Pseudo science. The questions may be validated but they are only valid if the illness being studied doesn't present with the same symptoms.

[TaraJR in reply to jimh111]

I've just watched a webinar by one of the authors of 'the other study'. It was truly awful. Yet it was called Patient Centred Approach to Hypothyroidism. I've never heard anything further from patient centred. They may issue a recording.

thyroid-fed.org/webinars/

[tattybogle in reply to TaraJR]

i can't decide whether i want to watch 'the other one' , or whether i'd rather give myself gravel rash and then rub salt in it....

[TaraJR in reply to tattybogle]

Lol!! I'm not sure which would be worse either!

[arTistapple]

My fear is that this will not be heard by ‘The Powers That Be’. So much stuff crosses their desks. I was hoping it might contain more specific financial information/mapping, not just for the impact on individuals but through to our GDP. If we want politicians to understand in any shape or form that hypothyroidism is a miserable condition which not only affects the well being of the individual patient, their family, their community, their country, we must be in a position to produce more specific factual information.

The most striking comment for me from the writer of this report from Thyroid UK Webinar on 25th May was the innocence of her remark that implied she was genuinely surprised that All Interested Parties had never sat down together to discuss the issues. Also that nothing was mentioned in the fairly recent strategy document on Women’sHealth. A gross oversight in my opinion too, knowing full well this was highlighted by ThyroidUK and individuals contributing to both documents.

I am sure Lyn picked up on this as I imagine (not been here long enough to work out all the connections) that is precisely what all the different thyroid charities are constantly working towards. These comments had more of an impact on me than the actual content of the report - we are very familiar with the content very well - we live it.

As so much research ends up. More to do.

[waveylines in reply to arTistapple]

Yes but what really annoys me is that it's all about treating patients optimally. If that happens many people with bupothyroididm can live active happy lives. It's the implementation of treatment that's faulty. It's appalling. Most people with hypothyroidism need not suffer the way many do if they are diagnosed earlier and treated optimally. The problem is for many this just does not happen & frankly leads to harm.

[helvella in reply to waveylines]

Right down to the seemingly trivial end of the scale. I've been on Aristo for a few months. And, whatever the actual reason, am feeling better than on Accord.

But it is only due to my personal involvement here that I knew about it, that I thought it worth trying, that I was prepared to ask in a way that they agreed to.

Major difference? No - I don't claim that. Enough of a difference to feel like a good idea? Yes.

[arTistapple in reply to helvella]

OMG. I do not pay much attention to this issue. I am generally sensitive to most medications. However this never really happened with thyroxine, other than in a small way, which sorted itself out fairly quickly. I stopped meddling with my meds after an unsuccessful titrating of levo and then a brief intro of T3 and expected things to settle, which they have. However I did notice that my source of levo has changed, after a question from SlowDragon but still did not think too much about it. My change is from Aristo to Almus, I think. The Almus is definitely the one I am on now. Off course now I do not know how much this might have affected me. Even husband remarked on the improvement, which I have put down entirely to stopping meddling. So now I do not have the full picture (again). Someone really ought to write a pamphlet on all the things we should consider and be able to refer to later, at commencement of treatment (maybe it already exists). I know a lot of this is mentioned again and again on the forum but especially when there is a crisis a little handbook could be useful.

[helvella in reply to arTistapple]

Almus is Accord product.

One of the reasons for wanting to change was a feeling that at least some Accord product had been effectively sub-potent - for me.

Plus, an increasing concern that there might be a specific issue when lactose is used in levothyroxine products.

I have had two other lactose-free and mannitol-free levothyroxine products in the past - and both were fine. So the obvious choice (from my perspective) was to try Aristo.

The single most helpful thing to do, and I say this utterly hypocritically, is to make notes of everything. Every prescription, every symptom, every test, every make and batch number. Nothing is too small to record.

Use computer, paper, anything you like. Just ensure it will not be lost. And is easy to keep going.

[arTistapple in reply to helvella]

Yes this is what I am finding out?

[Wua13262348 in reply to helvella]

Re. the issue of lactose in levo. I'm sure I read , I think maybe an Italian study, and they had come to the conclusion that lactose did cause a problem with absorption. If I remember correctly, they found there was no problem drinking coffee at the same time as taking levo (Italians like their expressos), as long as it was black coffee. I think the recommendation for leaving the gap between coffee drinking and levo was found to only be valid if you took milk in your coffee, as the lactose in the milk was the culprit for the absorption issues.

[SlowDragon Administrator in reply to arTistapple]

As general rule only ever change one thing at a time

But reality is that’s frequently impossible …..life or changed circumstances get in the way

For example, I went dairy free in August last year to great benefit.

But I have still not tried lactose free levothyroxine or T3

Having lost over 10 kilo I needed to reduce overall dose……taken a year of experimenting to work out that T3 needed reducing …..not the levothyroxine

(T3 down from 20mcg per day to 12.5mcg in total)

In another 2-3 months I might be ready to try experimenting with changing brand levothyroxine to Aristo (or Teva)

But T3 going to have to remain as Morningside as I am currently taking 5mcg, 5mcg and last dose as 2.5mcg (which would be impossible to cut from 20mcg tablet)

[arTistapple in reply to SlowDragon]

Thank you SlowDragon for that picture of what it’s really like. I admit to feeling between a rock and a hard place just at this moment. I have an adrenal test that I have not yet read the instructions for. I have done about 3 months on a thyroid med dose I know is too low, which at this rate I could still be on for a while. I am awaiting the result of heart tests. On the one hand I feel like I am kicking my heels and on the other thinking I must do something! By lingering on this inappropriate dosage I can feel my mental health under a bit of pressure plus clear ‘thyroid’ physicals. Nothing as bad as I was, I hasten to add but concerned as I do not want to get to that totally ineffective level again. I can see from the forum our ‘building blocks’ to get out of this mess are as individual as we are. It’s not easy to face them or get them in the correct order that’s best for us. This is the only place this information and experience exists. Thanks for your post.

[arTistapple in reply to waveylines]

What you say is the crux of the matter.

However unless the ears that can do something about it, those of whom at the moment can’t or in some cases (medics) won’t hear/listen, we have to find another way in. I find that everything is about money these days and there is much to be said about money where hypothyroidism is concerned.