Thyroid UK

130,609 members • 153,866 posts

Money talks - how much does NOT treating people with thyroid diseases cost the NHS and the country as a WHOLE - please take the survey

The cost to the nation of leaving so many people undiagnosed and in many cases under medicated, even if thyroid disease is recognised, is costing the NHS a fortune. People's health deteriorates and co-morbidities develop. At present we can only imagine how much this folly costs the NHS.

However what about the knock on effects to country in terms of loss of productivity? We can intuitively know it is far greater than the cost of adequately treating in the first place, but this needs to be quantified. Quality of life alone is of no interest to policy makers.

I firmly believe the argument for improved treatment will be won purely on financial necessity - nothing more. We need to try to quantify the cost of poor treatment has on the NHS and society as a whole.

And here is the opportunity!

healthunlocked.com/thyroidu...

Have a read on what has been achieved so far by clicking on the link above where you can then link to the survey

Apologies, but I will be posting every few days to give maximum exposure. Can I also ask my wonderful forum buddies to share far and wide. More data = More clout for the results.

Written by

Charlie-Farley

Administrator

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39 Replies

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Hypopotamus11 days ago

You are working on the false premise that the primary role of the NHS is to help us, when it is really another money-making venture. So the more of us that they can make ill, the more profitable it is. Remember, they are not paying the costs of treating us, we are.

This is not to say that individuals working in the NHS are not doing their very best to help us, but they are often working with at least one hand tied behind their back.

Charlie-FarleyAdministrator in reply to Hypopotamus11 days ago

I couldn’t agree more!

Auders in reply to Hypopotamus10 days ago

absolutely spot on! (Sadly) x

Eyes-wide-shut11 days ago

thank you for highlighting the survey. I hope it affects positive change 🙏

userotc11 days ago

Id happily participate if Id been diagnosed with thyroid disease, but havent. I think the concept applies across all disease so hopefully there'll be a wider survey soon.

arTistapple in reply to userotc11 days ago

And yet if I recall from the survey this was one of the points of contention. Comments about not being able to get a diagnosis and medication. Check it out. It will only take a few minutes to find out. You might find it covers your circumstances.

userotc in reply to arTistapple11 days ago

Under "participation", it states "you must have been diagnosed with a thyroid condition".

So I completed until it asked that question and the survey ended when I said "no".

Charlie-FarleyAdministrator in reply to userotc11 days ago

did you see the Myhill interview?

userotc in reply to Charlie-Farley11 days ago

Yes, enjoyed it.

arTistapple in reply to userotc11 days ago

I think (if you are convinced you have a thyroid condition) that your participation is vital. It really is important this stuff is highlighted. Lack of diagnosis has huge implications for yourself as well as the outcome of this body of work! I have the email address of the person organising the survey. I will try to find it and post it and you can make your very important opinion, without using the survey itself. Surveys (like perhaps more easily definitive research) are often frustrating in that they do not cover important areas. Sounds like you are an important area!

userotc in reply to arTistapple11 days ago

My situation is that I was given an NHS prescription drug which adversely affected my whole system (see my Profile for info). That includes my pituitary/thyroid.

After getting nowhere with NHS primary and secondary care, I reverted to naturopathic therapy. I decided there is little/no point trying to treat the thyroid when other parts of my system are also affected. Particularly when I realised the NHS medics not only wouldn't treat me but also couldn't (they don't do root cause!).

So I think I maybe could contribute in part since the endo I saw did not even test my thyroid markers yet many subsequent private tests indicate thyroid is affected. But now I wouldn't go back to the NHS medics even if they wanted to "treat" me!

Still think I'm an important survey area?

Charlie-FarleyAdministrator in reply to userotc11 days ago

I put I was diagnosed by a fellow sufferer - which is true only confirmed a GP. - other??

userotc in reply to Charlie-Farley11 days ago

My thyroid condition was self diagnosed based on private tests and symptoms.

Charlie-FarleyAdministrator in reply to userotc11 days ago

Other

I’m sure there was an option for other. It is a valuable data point

arTistapple in reply to userotc11 days ago

I can’t say I blame you re: NHS medics. I have been through a few dreadful situations. I was left in pain (angina) for 25 years. I was given GTN which never worked. I never went near for many years as the whole drug regime was such, I was ….. It was magically resolved when I commenced levo two years ago. I did read your profile. I have no idea what you were prescribed but I can well believe the outcome. Maybe this particular fight is not the one for you to put your energies into. It may be that your issue is what you were given (medicine?) and that needs following up. It’s an absolute nightmare dealing with issues of this kind. Many of us on the forum have suffered something similar to yourself. I have been down the legal route (for another issue) and I cannot recommend it but sometimes needs must?

AND of course I think you are an important survey area. If you are experiencing thyroid issues, it does not matter to the survey how you got them. It’s all about how things have gone from there and the push for proper treatment and how that effects our lives and contributions (or lack of) to society.

userotc in reply to arTistapple11 days ago

Thanks. My 2 key responses are:1. Legal. We did try this within the required timescale (my dad as I was too Ill). But solicitor said minimum chance of success basically because any GP would've prescribed the same poison!

2. Push for proper treatment. Extensive research from my dad (PhD scientist) and myself concludes that Nutritional Therapy is the only one. More drugs from clueless medics is not for me!

arTistapple11 days ago

It strikes me more and more that the government and the NHS (which is effectively a branch of government) are completely incompetent at creating valuable outcomes. They both tie each other in knots (red tape). There is often no common sense involved in what they do and in fact, each gets in the way of the other. Hypothyroidism in particular, is very misunderstood at a very basic level. There appears to be no substantial motivation (or quickly lost) to get it right for patients. The legal protection of doctors is now tied up so tightly and stultified; even if they are self motivated enough to help they can’t or won’t help. The welfare system seems to have no idea what it is doing and again we see here tangled red tape. People having to give up work (myself included) because of unclear diagnoses, no support and terrifying financial situations, lives wasted and contributions to our society lost. Where is the ‘joined up’ thinking? Even this survey misses opportunities. However COMPLETE THE SURVEY!

Just an aside. I was in A&E and there is a notification on the sophisticated TV screens telling you how long you have to wait to be seen. They have a remote control which changes the time as circumstances change. When I went in it was 2hrs. There were four people waiting, including myself. The inside corridors where people on trolleys are normally queued were clear (unusual). Someone quickly came and changed the waiting time to 1 hour. I waited six hours! With no change to the displayed waiting time as the day went on. You know, if something as simple as that can’t be attended to ……… I would not mention it but there is nowhere to rest your head if you do not go in on a trolley. Honestly I think I had an episode of PTSD or at least extreme claustrophobia. By the time I got out I was an utter mess. Or maybe as it was my third visit in 3 months, it was a subliminal message to me like Pavlovs dogs. Do not come back under any circumstances! Happy to oblige - if only.

SarahJane147111 days ago

done

helvellaAdministrator11 days ago

How much does not doing FT4 and FT3 along with TSH cost?

For the sake of discussion, I’ll suggest that doing a blood tests costs £10. And each additional analyte costs £1.

Savings of TSH-only initially appear to be the incremental cost of FT4 and FT3.

£10 rather than £10 + £1 + £1.

But costs include repeat tests, which usually do TSH again plus FT4 and (maybe) FT3.

£10 + £12.

For each patient who needs a repeat test, that would pay for five patients having all three done.

Obviously this needs scaling by frequency – if only one in a million gets re-done, that cost won’t add up to much. But if every patient who goes from GP to endo needs a full set, and I think they should, then every pre-endo TSH-only test is effectively a waste of £10.

Plus repeat appointments because all three were not available.

Plus costs of bad management of patients’ issues, poor diagnosis, and loss of potentially very important population statistics.

That is, doing all three might reduce total blood draws. And contribute to better thyroid treatment. For no actual increase in costs.

If a lab always did all three, they might manage a better cost deal with the supplier. With FT4 and FT3 seen as in some way special, I suspect their cost is higher than it might be.

Marz in reply to helvella11 days ago

Could there be a 'cunning plan ?' Keep people undiagnosed and under treated whilst other conditions proliferate. This will require many more money making prescriptions ... this has been mentioned before but it keeps popping into my head - especially when I read the eye watering amounts of money spent elsewhere - loosely connected to our 'health' ...

" Take care of the pennies and the pounds take care of themselves" - springs to mind 🌻

Charlie-FarleyAdministrator in reply to Marz11 days ago

Marz Yes!

There does seem to be a self perpetuating entity issue here.

My mum was on over 20 pills a day - she was taken off them to go onto palliative care- got better (to a point) and was taken off palliative care - sadly suffered another 3 years, but it is not isolated, I hear of accounts like this on a regular basis. 🙄

Marz in reply to Charlie-Farley11 days ago

So sorry to read about your Mum.

My Mum lost her hair at menopause and was told by her GP to buy a wig ? Later she was prescribed heart meds for an irregular heart beat having been told it was angina ?

She was diagnosed with Non Hodgkins Lymphoma and slipped away at 80 in 2000. Both Hubby and I have Hashimotos and as both our Mums died with NHL it had me searching for a connection .....

Both Mums were undiagnosed with thyroid issues. Photos over years tell a different story......

It's all very sad 😮‍💨

Charlie-FarleyAdministrator in reply to Marz11 days ago

Yes it is........

helvellaAdministrator in reply to Marz11 days ago

I honestly don't think they are organised enough to achieve that!

However much it might feel like it.

nightingale-56 in reply to helvella11 days ago

NHS spoil lots of 'ships' for a ha'porth of tar helvella !

arTistapple11 days ago

These tests, methods and prices are important. For me it’s the Co-morbidities that really ramp up the costs. Of course if they did the tests correctly in the first place and medicated us properly we would not necessarily move on to those! However, unfortunately there are the wide range of hypo symptoms which attract all sorts of treatments doctors seem to think are separate conditions; when really they are just symptoms of improper treatment for the thyroid! So far I have been offered anti-depressants, stomach acid suppressors, statins, pain killers, migraine meds, stool softeners, haemorrhoid preparations, about 17 different heart meds including GTN and many more I have forgotten. Never mind ‘procedures’! It’s MAD. Then there are truly other Co-morbidities we do actually move on to. Major major amounts of cash whilst patients are unnecessarily left with the detritus of their lives. It’s like a totally foreign language that ‘they’ do not seem to understand. Then welfare issues/costs. I could go on ranting. I will refrain.

Charlie-FarleyAdministrator in reply to arTistapple11 days ago

absolutely on point!

Sneedle11 days ago

Done

SarahJane147111 days ago

I do sometimes wish there was a “dislike” button on this forum.

I really cannot believe there is some grand plan to keep patients unwell for profit.

Cost cutting yes, but trying to make profit form illhealth no.

Sorry if I’ve misunderstood some of the points being made

Charlie-FarleyAdministrator in reply to SarahJane147111 days ago

I can understand Sarah

But from the experiences I have read on here - all bets are off for me - Not regarding the people in the NHS working on the 'rock face', but policy makers.

Decisions on making roads safer are made through statistical analysis, the value of people surviving against cost of people being saved through often expensive road safety measures - I sat through that Stats lecture in shock. Thankfully the slower speeds signs in towns are relatively cheap and are generally adhered to in the day and children are safer, but night time? Still I'm sure the additional costs are offset to some extent by speeding fines.

I believe over medication with way too many drugs means at present it is impossible to determine complex interactions with several medications, seen it in my mum (explained above). It is quite common and has been for some years. Yet inadequate treatment with thyroid hormones is encouraged and co-morbidities develop. Why I wonder? Big Pharma provide the drugs and the trials to back up their new products. They double down hard on alternatives because they simply can't patent a natural product, so they isolate, tweak synthesise and then patent, whilst rubbishing the natural products they often isolated their drug from in the first place.

I do hope eventually the integration of health records into one massive database will allow analysis of these interactions and stop the over and under prescribing that make so many ill. I've seen enough heartache for one lifetime already....... Just hope if/when the research happens it is truly independent🤞

Have you seen the Myhill youtube video? very recent and superb.....

SarahJane1471 in reply to Charlie-Farley11 days ago

I think I will have to respectfully disagree with you on this point 🤷‍♀️. No offence

Charlie-FarleyAdministrator in reply to SarahJane147111 days ago

Totally understand Sarah 😊

No offence will ever be taken - our own experiences and those close to us form opinion and we do not all live the same lives.

thyr01d11 days ago

I am missing something here, perhaps you could explain? I don't think I cost the NHS anything by remaining undiagnosed and then incorrectly medicated. When, as a result of this forum, I realised I am a poor converter and saw an endocrinologist who prescribed Liothyronine I must have cost the NHS more than when the diagnosis was just uat. It seems to me that incorrect or no diagnosis and treatment is cheaper than correct, is this just my own experience?

humanbean in reply to thyr01d11 days ago

If your medical problems have reduced your ability to work then you do cost the country money. But if the government only looks at the cost to the NHS of non-diagnosis and non-treatment then this will not get mentioned.

Working fewer hours or for a shorter time (retiring earlier) means that you earn much less money over your lifetime than you might have done as a completely healthy person. You will buy fewer goods in the shops, thus reducing your contribution to the economy. You will have a smaller pension, thus continuing your reduced economic contribution to the finances of the country your entire life.

Also, taxes? You will pay less tax on earnings and less VAT on goods and services than you might have done otherwise if you'd earned more as a healthy person.

thyr01d in reply to humanbean9 days ago

Oh I see now humanbean, thanks for that good and clear explanation.

Charlie-FarleyAdministrator in reply to thyr01d11 days ago

Hi thyr01d

a lot of the issues around not being diagnosed and then latterly not receiving the right treatment is really well summarised on the Dr Sarah Myhill video on YouTube. Brilliant summary of issues.

youtube.com/watch?v=Sw_n9Uw...

humanbean11 days ago

One of the things I find annoying is that there is an assumption amongst the healthy that people with chronic illnesses are avoiding work because they are lazy.

I'm sure I've read that the percentage of people who are diagnosed hypothyroid now is much higher than it was in, say, the 1950s when there were no tests for thyroid hormones or even TSH. This is taken as proof that people have changed for the worse, and are just lazy hypochondriacs who don't want to work.

Another thing I have read - a few years ago - is that there are over 70,000 new substances in general use in the population than there were in the 1950s. In agriculture, construction, food production, furniture and fabrics, cleaning products etc.

These new substances could be making people ill. And the interactions between all these new substances could be making people ill.

But in all walks of life the person with more power blames the person with less power for all their own health problems or their inability to work as much as healthier people. And this has probably gone on since humans first existed.

Platinum-Jubilee9 days ago

Done with lots of 😭 Thanks for this opportunity Charlie-Farley 👍🏽

Charlie-FarleyAdministrator in reply to Platinum-Jubilee9 days ago

Yes, I can relate to that. Anything that requires me to take stock of the situation can bring it on, as does reading other people's experiences (frequently more so). I have had it nowhere near as bad as others. For me it was the additive effect after a decade, caring for parents in decline - I thought 'eh up' looks like its me next.

When everything started to get on an even keel and look a little more hopeful, I couldn't quite believe it and got panic attacks for a few months thinking I was going to die. It's not rational, but it is understandable. That's why I'm staying here.....