this recent survey and report by Aberdeen University Business School will give people a better idea of the scale of unrecognised and 'invisible' problems that many thyroid patients face throughout their lives .. even after they have been 'adequately' treated.
Link to survey report : abdn.ac.uk/news/documents/T...
Catia Montagna and Alexandros Zangelidis
Centre for Labour Market Research (CeLMR) May 2023
Just posting this so i don't loose it (computer is going in for a lobotomy)
It is being put on T4 monitor therapy ?
think it's likely to be given a dustbin diagnosis.
Right then ...... i've successfully moved it's contents safely onto an external hard drive.
(very well done me 
.... i'm a reformed luddite don't ya know)
..... i'm going to turn it off now in case it self destructs .... little green lights are mostly red and flashing , it's screen is blinking ... and it's making fizzing squeeky noises .
I'll be back when 'computer mending man' has fixed it or sold me a reconditioned replacement and after we've said goodbye and good riddance to the government.
Tatty Bye for Now Folks. ... see you all on the other side. xxxxxx
Oooh look everyone ... before i go , i just noticed what else these wonderful guys have published since they did this survey report:
They are 'open access'.... links on here:
abdn.ac.uk/business/profile...
"The Impact of Employer Sympathy on Women's Labour Market Prospects: A Focus on Thyroid Conditions" .... published 2024
"Labour Market Implications of Thyroid Dysfunctions" .... published 2023
People's Experience with Thyroid Disease: Survey Report 2023 - Published
Thyroid Dysfunction - Can it Help Explain the Gender Wage Gap? 2022 - Published
Labour Market Implications of Thyroid Disfunctions 2022 - Published
I haven't read them yet due to my bouncy screen....
right, now i really am off to the menders ....
caledoniancat HowNowWhatNow helvella SlowDragon lynmynott RedApple TSH110 HealthStarDust Fruitandnutcase Zephyrbear Regenallotment TheMudRunner Cornwaller crimple SmallBlueThing
It’s bothering me preconception and pregnancy has not featured in this study.
do take into account that it's a study of the effects of the disease on business/ economic productivity etc , its a while since we did it , so i can't remember the details of what they asked.
Wish I could remember what my responses were. Got a rough idea though.
The quesations were a bit limited , so i i emailed the authors a small essay and got a good response :
Dear ......
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
HealthStarDust
Thank you.
Really great to see this survey result.
Question is - how can it be used now to lobby and mobilise for change, in policy, research, working lives and women’s medicine - healthcare?
It is not the kind of study that just needs to sit in a drawer, it needs to be pressed into palms and read out from, on a podium.
Go Aberdeen Business School. Thank you to anyone reading who was part of this piece of work.
I’m sending a copy to my MP who will be reelected and asking that action be taken to improve matters - 90% still with symptoms it’s simply not on - things need to change and fast. I’m suggesting patients be legally entitled to choose their preferred hormone therapy. It’s time they stopped treating us like children and acknowledged we are quite capable of determining what therapy works best for us and we ought to be able to choose it freely. They need to get their act together to empower us not spout all that somatic baloney as a cover for them to persist in lazy doctoring us.
90% still with symptoms.
Ask patients how they feel about their treatments, and then listen to them?
It’s always worth a try to find an MP who will listen.
Oooh… I’m sure every single one of them will be “very keen to listen…” to anything anyone might have to say today! 😂 Mine’s Craig Williams… 😂🤣😂
Make it the college of endocrine doctors, then.
Am happy to go to a meeting and advocate on behalf of others, as am sure are many others reading.
I don’t have the medical expertise many here have but what I do have is experience of lobbying and influencing policy makers (even when it takes making a speech or writing a presentation they might try to deny every word of, if it wasn’t heavily evidenced) and in non legal mediation and legal negotiation, and also a feeling that there is simply no more time to waste. Whole generations of lives - mainly women’s lives - are being half lived and wasted because of a lack of commitment to taking thyroid patients seriously. We know this but there are some good people out there who don’t.
My MP has given a positive response to me and he says there’s an independent survey of the state of the NHS being carried out but I’m not so happy with the downplaying of thyroid conditions when he states all conditions need a reduction in the time to diagnosis. When decades is the norm and it mainly affects women, we should be made a special case.
I guess if we don’t complain to them then who else is there that might be able improve matters? I guess we can keep whingeing on here to the already converted it’s a huge help but it won’t move things forward except on a very personal level. The underlying issues causing so much unnecessary suffering need addressing.
GPs should be testing vitamin levels, bring them up to ideal levels, not minimum. My GP has freely admitted to understanding VitD is vital for some thyroid sufferers to feel healthy, but never tested mine.
I agree with everything you say, been on thyroid medication for over 70 years.
Thank you tattybogle for posting this. Only managed to skim atm but will read later. x
I remember this one! Thanks Tatty, great to see their report 👏🌱
I would imagine the long diagnosis period is due to the high TSH threshold levels the NICE guideline indicates for diagnosis. As my GP said, being over 5.0 for me could be a huge shift from my normal, and for others not so much. The issue is no one knows their levels before they had symptoms.
That obviously doesn’t excuse the gaslighting many of us suffer from. I’d love to see the disaggregated data around average diagnosis times. It could be on average much longer for women than men, and honestly I don’t believe anyone would be surprised if that were to be the case, sadly.
Really interesting report, and thank you for posting it tattybogle 😀
yes i suspect the TSH threshold has a lot to do with it .... but not in my case as it took over 4 years for anyone to even suggest a blood test ( ignoring the glaringly obvious 'clue' that i'd recently had a baby, all were too busy suggesting talking therapy/ antidepressants) .... after testing i was treated quickly.
i agree re. our individual 'normal' ~ my TSH was only 5.7 / 6.8 when diagnosed (TPOab 2499 [0-50] ) but i was really struggling to function by that point and had been for years... by comparison my 26 yr old daughter recently had her TSH / fT4 done (let's assume these results are her 'normal' as we have no reason to think they are not) ... her TSH is 0.61 [0.57 -3.6] and fT4 12.8 [7.9-14] 80% .... so perhaps it's not too outlandish to assume that my own 'normal' might have been similar to hers.
Yes roll out the antidepressants their universal panacea. A totally inappropriate panacea but if you don’t look for a problem you won’t find one - job done and just go away please & keep taking the Prozac
Mine was zero one week and 110 the next 😱 small wonder I was as mad as a hatter by then but I only got the test cos I determined I wasn’t shifting out of the consulting room until got them to do a thyroid panel. I was still offered antidepressants first I told him this is beyond anything antidepressants can touch - mad but correct! 10 years of unnecessary suffering, I’d already told them I thought it was all thyroid related because of a family history of it. All completely IGNORED
I had at least three issues which I am quite certain were related to being hypothyroid. They only did a TSH because I had enough exposure to things to ask. Otherwise, I could have gone on accruing symptoms for years.
Not associating numerous complaints/symptoms with thyroid is a major factor in delaying diagnosis. Sometimes forever.
I reported my symptoms with a dose of “I’m pretty certain thyroid issue is likely due to a strong family history” and they still implied depression (I had two young-ish children so obviously tiredness is due to them and I must be depressed - I knew I wasn’t), and many years of being told my Strava data and MyFitnessPal data were clearly not accurate (they blooming well were - scientist by training here and what’s the point in half-arsed data?!), among other issues. I doubt a man presenting the same information would be as thoroughly dismissed.
I confess I had no clue about the other autoimmune condition (pernicious anaemia) or my below clinical vitamin D levels, but they never offered to test for them, or indeed treat either once discovered. I’ve had to go through a private GP for all three issues… It beggars belief.
So sorry you, and also you tattybogle have had such rubbish experiences too 😞
Yes each one a completely discrete problem, no attempt to join up the dots, the ability to see the bigger picture has been lost. For supposedly intelligent people I cannot believe how daft so many of them seem to be , bogged down in minutiae they appear not to comprehend anyway, with zero overview being attempted. It’s a darn sorry state of affairs
In my case it was down to not bothering to listen properly and run appropriate tests, but just to blame everything on the menopause and gaslight me. Pure ignorance no thyroid panel test was even run in the first place. I agree the ridiculously highTSH at 10 rubbish does not help. If you feel ill you should be treated and the sooner the better. Why is common sense lobbed out the window where thyroid disorder is concerned. It’s them that’s a mad house not us.
5 is not normal for anyone, to suggest it is is a nonsense
“No one knows their levels before they had symptoms…” This is precisely why, when I was first diagnosed, I told my son and daughters to go and get their thyroid levels checked so they had “normal” values for them as a base reading to compare any future deviations with. It has already paid off in the case of one of my daughters who is now receiving thyroid replacement treatment and who didn’t have to wait until her TSH reached 10! I’d recommend everyone to do that full blood test(probably privately as no NHS test would include FTs3 or4) even if they don’t have any symptoms yet so they have a record of their normal.
Such wise advice. I wish I’d had mine tested before everything went belly up.
Cos I take NDT suddenly I get free T3 tested at the surgery - it is blamed for everything - despite taking it for eight years with no issues, suddenly any recent ailments are down to NDT 🤬 free t3 is about two points over range 🙄 the T4 is good, quite low. I have thyroid hormone resistance so need more anyway. I’d rather it wasn’t that high but if I take less I feel awful. You can’t win they make you ill on Levo and tell you it’s the best it’s ever going to get then you discover that’s a pack of lies as you feel so much better on NDT able to actually function again, then it’s blamed for any health issue, as if ONLY people on NDT ever get ill or have health problems.
If it kills me, it will have been a life worth living and I’d have zero regrets, not the zombification I suffered on T4 monotherapy living a life so devoid of anything to recommend it I wanted to terminate it.
Thanks for posting, its a very sobering read - some complacent backsides need a jolly good kicking
Just about all political parties agree that there is a productivity, or lack of it, problem and the poor treatment of hypothyroidism is probably one of many contributing factors. It would seem from both an economic and human perspective a more aggressive rather than minimalist approach to diagnosing and treating thyroid disease is warranted. Unfortunately the medical system seems determined to follow the minimalist route. Does anyone know why they are so motivated. It seems perverse and contrary to the interests of just about everyone.
Cynically (realistically), I cast my mind back 25 or so years to when back pain was seen as an issue that needed tackling. I was recovering from compression fractures and dragged myself via three buses to the hospital, 25 miles away, full of hope. Having completed a huge, highly intrusive questionnaire, a consultant questioned me further and then proceeded to belittle me, before sending me on my way. Much later, I paid for a copy of my medical record, and saw that the consultant had written to my GP that I had been "reassured". That department was probably used to inform ATOS processes. The same Trust now wants me for genetic testing, saying it will be tied to my medical record and "other sources". Social media?
Deep rooted misogyny seems to cover it
Yes, it seems to be a factor "batty old women".
Thanks for posting tattybogle. I have printed a copy to send to my MP whoever that might be!
Wonder if there is any mileage in sending copies to GP's?
Mine has got back today response is positive he says there’s an independent survey on the state of the nhs being carried out but I wasn’t so happy with his subtle downplay saying all conditions need a faster diagnosis and there’s no mention of its affect on the economy and fiscal wellbeing of us as a group. He said he was going to read it all so I guess he just did a quick skim for his response. Perhaps he just meant the report which is not so reassuring. I felt he had rather missed the main point I was making ie. it’s a direct discrimination against women. To hell with all the other illnesses that are badly dealt with, that was not what I was raising.
I mean decades to get a diagnosis, I can’t believe other conditions are as badly dealt with as ours and worse still, it’s a common disorder nothing rare or tricky about it, if they actually listened and did all the right tests. As for the state of the treatment it’s a darn disgrace. We should be a special case needing urgent action not just lumped in with any old disease, and ignored as the statistics level us to nothingness - how will that lead to the changes we need?
Proper monitoring of those with a family history of thyroid disorder would be a simple step to improving diagnosis and would put a stop to ‘it’s just the menopause’ & ‘it’s all in your head’ brigade gaslighting at least one cohort of potential sufferers
You’d think it were rocket science
Interesting to see this published by the Dept of Economics researchers rather than health researchers (it helps to spread the net of awarenes). It would be good to see this followed up by a survey investigating the use or non use of reasonable adjustments for employees with thyroid conditions who need/seek adjustments. Also, what type of professional advice was given regarding this and whether successful or not. The phrase "we'll refer you to occupational health" is used more as a threat than a support in my work place.
They tried to diddle me out of redundancy after 8 years service - I was yelled at by a really evil line manager when I was still feeling terrible and was nowhere near optimised and was supposed to have been given reasonable adjustments to my hours until I was better and able to function properly again. How I even did any work in that state is beyond me. I remember going to the Xmas party before this when I had the final blast of thyroxine before eternal hypothyroidism hit me like a brick wall, as he spoke to me I thought he was the devil 👹 I mean I really thought he was the personification of evil, my mind may have been greatly affected but sure as hell I was right about him - a complete psychopath; all the other team members loathed him. The union threatened to take it right to the very top…. guess what - they backed down cos they didn’t want any adverse publicity. How the hell they ever got charitable status is beyond me not an ounce of the milk of human kindness in the place bar the union rep who was brilliant. The devil incarnate was promoted 🥱 there’s a surprise.
Leaving there with the redundancy money was justice being done but boy was I made to suffer for it, the relief to be getting out of that vile organisation was palpable . The gravy train CEO should rot in hell for the way he treated me.
I feel for all for all those who are victimised at work for having the temerity to suffer with thyroid problems - how dare we get ill through no fault of our own.
I think same as you tattybogle....government have far more other issues to deal with than focusing on ppl who self medicate for thyroid problems.
A Reply to the Responses of the Scottish Parliament to the submission by Thyroid UK of their survey on satisfaction with thyroid therapy
Survey of women’s health in the North East and North Cumbria - a chance to share experience of thyroid health careNew Survey addressing the problem of non-adherence to medication for people with thyroid or other diseases.Tomatophagia Caused by Iron Deficiency Anaemia: A Case Report
Money talks - how much does NOT treating people with thyroid diseases cost the NHS and the country as a WHOLE - please take the survey
