I recently read an article about Nadiya Hassain, how she had two autoimmune diseases. It showed a chart of the common diseases, and what caught my eye was how thyroid disease is by far the most common one, way above diabetes. So why the shortness of Endos that know about the thyroid? Why are GPs so ignorant of the disease? They must see it nearly every day.
Chart (which I hope sticks!) shows the figures.
I suppose we don't die fast enough from poorly treated thyroid disease so we are less important.
I think it is the other way round. Dead patients do not bring any money. Because thyroid disease has so many symptoms it means loads of tablets to address each symptom. Keep the treatment for thyroid at its very minimum, to keep the patient alive but still having symptoms to address. Because so many have this problem then people with thyroid conditions are the cash cows of the pharmaceutical companies. It is the pharmaceutical companies that give the biggest donations to the medical schools and "who pays the piper calls the tune". They teach thyroid is simple to deal with and only thyroxine is needed. In fact something they can make money out of, but not much actual medical work to do. In turn they teach their own pupils and pass on the misinformation. From an experience I had, it looks to me that they do not want to know. In 2019 I had some rogue T3 (I did not know this of course and was taking them as normal). I suddenly had an extremely horrendous back spasms. I cannot explain how bad it was. The GP gave extra strong pain killers, which nearly worked but only for an hour or two. She did a blood test which showed TSH risen from 0.01 to 1.8, T3 and T4 below range. That immediately showed me it was thyroid and it was the T3. I took some other T3 I had and within an hour the pain had completely gone. I told my GP this. However on my records she has written that patient thought it was T3 but she diagnosed back strain. She even phoned me and said it was not thyroid related because my TSH was well within range. How on earth could she diagnose back strain. She asked no questions as to how I could have got back strain, she took no notice that the TSH had risen (does back strain raise TSH?). So in other words she was not going to learn anything about this, in fact the less she investigated the better. Do we now have any thyroid hero's like the late Dr. Skinner and Dr. Peatfield?
Lilian whilst that is a ‘skew’ I had not thought of. I naively thought (and blamed) everyone else for ‘not seeing’ how improperly treating thyroid cost the country so much (never mind the lives left in ruins).
WOW your view is an interesting ‘via’ and explains actually so much more.
I now see the likes of our endocrinologists in a completely different light. They mostly never come over as clever and even some who write apparently excellent papers, come over all wrong when you meet them. They are utterly complacent in their views. Perfect fodder for Big Pharma. Many are likely just ‘pawns’ in all this.
Are we just being used? It’s quite Elon Musk/Trump level of squirrelling away on behalf of themselves only. My goodness I am even more naive than I was aware!
Yours is a very interesting view.
what caught my eye was how thyroid disease is by far the most common one, way above diabetes. So why the shortness of Endos that know about the thyroid? Why are GPs so ignorant of the disease?
Just my opinion ...
I think because the main sufferers of thyroid disease are women that it isn't considered important because women are assumed to be hypochondriacal, attention-seeking, and weak. Any men with thyroid disease are often considered weak because they have a disease which mainly affects women.
The only mostly female condition that gets a lot of attention is breast cancer, possibly because so many men like breasts, but of course I know that men can get breast cancer too.
But consider the amount of research being done on endometriosis, adenomyosis, and PCOS (hardly any as far as I know). These conditions can't be spotted externally and often take many years to diagnose, so therefore it is assumed that those conditions can't really be as bad as women say they are.
I assume that misogyny is behind a lot of the neglected health problems that are suffered mainly or only by women.
Sorry, but it really upsets me when I think of some of the disbelief, dismissal, sadism, and misogyny I've had to put up with in my life coming from the medical profession. And the same goes for other women I've known who've had to put up with the same sort of treatment (or lack of it). Oh, and the lies I've been told or that have been written into my NHS records, just when it's convenient. Grrrr!
"The only mostly female condition that gets a lot of attention is breast cancer, possibly because so many men like breasts"
Wow, that's a new low.
I love your profile name. Yes, a human being first and a woman second. Your last paragraph could have been written by me word for word. It's had a terrible effect upon my mental health not to mention my physical health. I can't write further at the moment. It's too upsetting. I don't know who to turn to.
I completely get what you’re saying - the impact of my mental health has been awful. Look after yourself ❤️
I am sure anyone reading your reply and not involved (suffering) with this illness would think this reply ‘harsh’. However for me I think it’s spot on, accurate in every way.
So again why is it there seems to be no effective action against this state of affairs?
I was impressed with very vociferous groups set up by patients with HIV. Yes it was ‘ an in your face frightening’ illness. Lots of people were dying and at that time it was ‘spectacular’. Cancer patients (more run of the mill) were often on their own. HIV/Aids got all the publicity, money pumped into it. Everything else was frankly humdrum. I think the illness (that of course nobody would want); and it’s treatment has come a long way. It’s certainly no longer front page news. Off course these patients could be living ‘half lives’ with medics happy that they are almost OK. Good enough seems to be entirely acceptable to medics.
If it were known (a really good description) what it’s like to suffer hypothyroidism, undiagnosed for decades and that even when finally diagnosed, that for millions of people there is no return to normal life (unfortunately like many illnesses) I wonder? Good enough? Do people who don’t have it, would they believe the effect of this illness sucking the very life out of you? OR really is it too horrific to contemplate by those who are well - like Damien Hirst says of one of his works of art? “The Physical Impossibilty of Death in Someone Living”. However in our case there does appear to be better treatment available but actively being withheld.
Constantly feeling like we are being ‘punished’ because our medical helpers know nothing about our illness. So far as they are concerned nothing is wrong. Us knowing this and having to suppress our feelings, pain, expressions of illness because we will just be thought of as ‘mad’. The final insult often, that some other serious health challenge occurs, which they cannot/will not correlate to the patients lousy treatment over the years.
I am utterly with humanbean on this.
Absolutely Humanbean!
Well put. There is no doubt that what you say here is completely true.
The issue for me is why and how this state of affairs is so prevalent. The NHS is as culpable as any individual medics here. History is littered with evidence that derision and negative labelling of women and female centric diseases is not new.
Furthermore, being female and aging is a double whammy. A family member is currently researching this for doctorate. Some of the issues are truly shocking.
Years ago when they would not let women study medicine has long gone and there are so many female doctors nowadays, somehow one would have thought the mental attitude towards women patients would have changed. Where are the voices of all those female doctors?. Women doctors are not immune from getting these conditions. What do they do about it?
my theory… because someone who, like me, has suffered from a young age, cannot even comprehend the possibility of any sort of career that would give me a ‘voice’. My suffering started age 9. I never had the strength or energy to consider any career within the health profession or government. The 2 places where the issue needs to be raised. I just had to survive. Any who are in these professions are either ‘healed ‘ by levothyroxine alone - thereby believing the lie that it is all that any of us need or spend years begging for help slowly declining till they can no longer work or effect any change because they are then also just trying to survive.
A doctors receptionist tried to dissuade me from requesting an emergency appointment because the doctor had marked my test results as not urgent. I said “that’s because you don’t die quickly from what I’ve got.”
There have been scientific studies to show that doctors will perceive pain in male babies as worse than in female babies. When it’s the same, or even no pain?!
Because we females are weak… or can tolerate more pain… or are disposable… or (insert misogynistic opinion)
Sorry rant over
I don't think they can afford to notice us so turning a blind eye and pleading ignorance is best policy as with so many things.... presumably they choose not to train as Thyroid Endos knowing there is no progression or glory as you'll be shot down if not toeing the line 😕destined to give poor treatment must be a sole destroying career
This not testing fT3 so we don't have to acknowledge or treat it seems to be a money saving policy how else can they justify it🤷♀️
It's about time that patients were treated with a bit more respect and as partners in their care rather than inferiors (to medics)!
Karen
I’m surprised by the order of some of those. MS higher than Coeliac etc 😳
Suspect coeliac is underdiagnosed. And of course, these metrics wouldn’t include those with non coeliac gluten sensitivity (which personally and cynically, I suspect may often still be Coeliac disease but the tests don’t pick it up—sound familiar?).
I remember when coeliac disease was first discovered. My friend had suffered for years and she was one of the first handful of patients to be diagnosed. It was a "rare" disease. The bread she had to bake was like rubber. Not so rare now, but I was surprised at how high up the list it was. Of course, having an intolerance to wheat is not exactly coeliac; neither is it necessarily more healthy to have non-gluten food unless you are intolerant.
I have both MS and Hashimoto's .Gaslighted and dismissed for years before my diagnosis. Only found out about the thyroid after years of being told i had normal in range thyroid, so i took my own test and then diagnosed because of antibodies.
Wow… that’s awful. Well done self diagnosing. I hope you are the best you can be given the circumstances 🙏
Very eye opening thank you for sharing. Up until I got my condition diagnosed, I have never even heard of thyroid problems let alone AI disease related. Yet I have heard of most of the other conditions on the list. The prevalence is astonishing. More needs to be done... PS Daisy Ridley is another public person to speak up about a thyroid condition. There is an insightful BBC interview.
Before I got hypothyroidism I only thought it was a condition that affected people's weight.
Years ago my dentist asked about changes in medications. When I mentioned thyroid Rx, he moved his arms out away from his body and said 'but you're not like this?' indicating larger from weight gain. I was already over 13kg above my previous adult weight before falling into the hypo hole... it was mortifying.
The answer is always “follow the money.” I haven’t quite figured it out… I mean, you’d think as the #2 most prescribed “drug” in the US, Levo would hold some appeal’
Levothyroxine (2020)
Total prescriptions: 98,970,640
Total patients: 20,225,373
There are about 320M total people in the US, so at least 5-6% of the total population. A big gold mine there.
It doesn’t answer your question directly, but obviously there is more money to be made elsewhere.
(Ps statins are #1 and the group of 7 main antidepressants are #3.)
Perhaps that is part of it? If more research was done & other treatments were developed, levothyroxine would be knocked off its perch & lots of money would be lost
FallingInReverse I believe there is little to no money to be made by 'Big Pharma' from Levothyroxine because it is non-patentable. The molecule is one single, well known structure that cannot be "tweaked" or chemically "improved" to allow a specific company to make a novel, unique, and hence patentable, molecule. This is how pharma companies make their astronomical profits... by developing slightly different modalities of a particular molecule, patenting that molecule, convincing the medical profession that their version of the molecule is the 'latest and greatest', and suing any patent infringements. Statins are a perfect example of that process with each global pharma company making a broadly similar, but sufficiently different, version of "a statin" and marketing it thus (see: simvastatin, atorvastatin, etc.).
As levothyroxine is a direct analogue of the human hormone, it cannot be modified in incremental ways as it would no longer work - i.e. our deiodinase enzymes would no longer "recognise" the molecule and it would fail to be metabolised to the active triiodo- version... and *POOF* there goes the pharma cash-cow!
Ah yes but the point here is that under dosing and dosing without T3 hardly keeps any of us on the Forum well. This means that many other drugs must be taken in addition to Levo- thereby costing a fortune. You may not have been trying to unmake this point. However the take on the tweaking is utterly underhand. Disgusting.
Yes - absolutely. The knock-on effect of keeping thyroid patients unwell does, indeed, open up other opportunities... you're not wrong! 😊
I was just addressing the profit point specifically from the angle of levothyroxine. I think some people (and I'm not saying this is FallingInReverse's POV) believe lots of folks needing adequate levels of levothyroxine, and liothyronine, and NDT, via replacement tablets (or liquid suspension) should equal a good money spinner for pharma companies - but this is not the case. It is, however, as you say, an "adjacent money spinner" for other, what would be unnecessary, treatments that would not otherwise be needed if the underlying thyroid issues were correctly addressed.
Well said, and arTistapple I think entirely consistent with your point.
Insulin too is bio equivalent but they get all the fancy short acting and long acting and continuous monitors (imagine!) and even continuous insulin dosing for some delivery technology out there.
How cool would it be to have a continuous thyroid hormone monitor and an always-on dose adjuster.
This is, actually, a fantastic idea. Maybe an approach like this would be where the "money-spinning" could be!? 🤔 NOT that I'm encouraging or agreeing with the concept of "money spinning" off the back of severe, life-altering, illness. The only positive might be that it could be the vehicle by which the pharma industry might take notice.
If more people with thyroid disease were treated appropriately, it would vastly lower the need for statins, antidepressants, insulin mediators like Metformin and blood pressure meds.
Well I guess there’s the answer.
We don’t have a healthcare system, we have a sick-care system, that does not benefit when people get better.
Bang on.
When I was doing my nursing training, 28 years ago now, they talked a lot about public health, about preventive approaches. I even had exams in sociology because it was well understood that where and how you live affected your health.
And yet, when I worked on the wards both during and after my training, the idea of trying to fix someone’s awful home environment was a pipe dream. If you couldn’t throw cheap meds at it, well basically, the NHS couldn’t help.
Things haven’t got any better—they are instead far worse.
As someone is who is just starting out on my Thyroid journey as such but has Adrenal Insuffciency to me it's because it's not fashionable.
I've been searching for a good Endocrinologist that deals with AI for over a year due to it causing multiple problems but because Diabetes gets the glory and fame (more money)that's where they position themselves. It's as if they'd be going out on a limb considering anything else. I don't know if it's also because some things like Diabetes are more straightforward for want of a better word (no offence to anyone suffering from diabetes as diabetes can be very complex) They certainly teach medical students far more about diabetes than they do AI. I think someone said statistically they get half an hour to one hour training on AI. For a life threatening condition that's really not a lot.
Having consulted my local Endocrinologist about my Thyroid, I didn't get any better treatment than I did for AI. Yet again I'm having to write a letter correcting a follow up letter as advised by my GP. Incorrect diagnoses. Diagnoses I don't have. Hypo and hyper diagnosed in the same letter. Incorrect medication. List of symptoms incorrect I could go on, the letter was almost comical.
I think there is as someone else said a certain element as well of you're a women and gaslighting.
Seems to me the NHS think that adrenal problems doesn't exist, unless you have Addison's :sigh:
Even then with Addison's they don't have a clue. The number of incidents in A&E is truly shocking and the amount of incorrect advice not to mention the competition of how low can we get your steroids before you keel over and die. 🙄
Doctors don't want to become Endos - simple as that! They prefer the "more exciting" branches of medicine eg orthopaedics 
Spot on - my local hospital has most specialisms. If you look at the department list, Endocrinology isn’t there. I know there is one but the service isn’t even listed…
Both exciting AND easier to demonstrate that your care makes a positive difference. Broken bones often heal quite well.
I am just living through the fallout from my Son's broken ankle last April. The ankle has healed really well (within the 6 weeks before we went back to his first check), his Cortisol has dropped to 15.9 (166 - 507). I don't know how he is still alive. I had a Doctor phoned me in a panic from Lolahealth on Friday evening and said to get GP to give extra Hydrocortisone, and to immediately put him on Sick Day Rules (which I did). With White Cells high and CRP also high, this could have meant infection. However, his temperature was normal for him and he wasn't acting as if he was ill (had been bedridden since he came out of hospital (8 days after ankle was operated on), which I believed at the time was to do with his Cortisol, and thought Doctors had this under control. Eventually a Doctor called me from 111 and said they were seeing things like this in Pituitary patients and not to worry, but just do Sick Day Rules, which was under control by this time and to contact GP on Monday morning. I did this but still waiting to be contacted back, after submitting Bloods results from Lolahealth (NHS Labs used). I believe all this was caused by raising his Hydrocortisone to 100 (he is on 25 mg per day and has been since about the age of 8), and then just going straight back to his normal daily dose. I believe you have to lower the dose gradually. I really am at my wits end. Needless to say his FT3 has lowered again.
How scary. I hope things pick up for him (and you!) soon. The lack of support and knowledge in this space is terrifying.
Thanks Jazzw . He has picked up quite quickly since Friday evening. Have now got the extra Hydrocortisone and awaiting further information from GP. Will phone the Pituitary Foundation for further information on reducing Hydrocortisone, as I believe you can't just stop it.
Cardiology, trauma or brain surgeon. There's no glamour or prestige in being an Endo.
many years ago I applied for a marketing job at a charity for kidney diseases , I forget exactly which one, it was over 20 years ago. Anyway the senior member who interviewed me said charities for this type of illness are neglected and short of funds as the more ‘sexy’ illness like breast cancer attract more attention as they appear deserving. I am not endorsing what he said but adding it here as reinforces this main post. Interesting and depressingly sad don’t you think that the attitude to certain diseases spreads through the whole network from pharmaceutical companies to the supporting charities.
I ask myself the same question all the time and even though I’m not generally sceptical or feminist, I think it’s related to it being mainly a female issue. The menopause was the same, until Davina McCall publicised it.
I hate the way my GP has been putting my symptoms down to other things for so long & only doing a few screening tests and ignoring things like unexplained cholesterol increases, high blood pressure & pre-diabetes when I can’t do anymore to change my lifestyle!
Could it be that they can’t quantify how many deaths are caused by or contributed to by untreated or undertreated thyroid disease as causes of death will show as heart attack, stroke or something else?
I also noticed that the recent research linking increased cancer risk to taking levothyroxine hasn’t been responded to or publicised widely - what are we to think about that? My mum was underactive & on thyroxine & died of endometrial cancer.
My daughter has PCOS, such a cruel illness for a young woman, healthcare has been appalling. She’s on a zero hour contract, minimum wage, paying for Metformin, while it’s free for diabetes (rightly).
Rant over, sorry everyone!
I also noticed that the recent research linking increased cancer risk to taking levothyroxine hasn’t been responded to or publicised widely - what are we to think about that? My mum was underactive & on thyroxine & died of endometrial cancer.
My gut feeling is that the link is actually about being undermedicated for hypothyroidism or not being treated early enough because of a GP’s insistence that TSH must go over 5 before you can have hypothyroidism.
My Mum had “borderline” hypothyroidism for at least the last 5 years of her life, unmedicated. She died of cancer too.
Thank you for all your responses. I am now wondering how often a death certificate mentions thyroid disease. After all, we dont die of it (we do) but die from the side effects, so heart attack or stroke are the cause of death on the certificate. And so, if people dont die from it, its not important? Seen as a minor thing?
If that’s a rabbit hole you’d like to fall down 🙂 the Office of National Statistics keeps tabs on cause of death.
Haven’t got time to dig too far right now but here’s a starting point: ons.gov.uk/peoplepopulation...
OMG absolutely fascinating on so many levels. This information is worthy of proper investigation. Instead of the usual offhand remarks about the ‘improvement’ in health are.
My first thought was “familiarity breeds contempt”.
I have been hypothyroid for over 40 years and can honestly say it has taken my life away . I didn’t know anything about it so believed gp when they said it was fine after annual blood tests and believed them when they said I had anxiety and depression. Ended up on anti depressants which only made me worse. Prescription was 100 thyroxine tablets in a little brown bottle with no paperwork like today. I took it with my breakfast every day so wouldn’t have been absorbed properly. Years later I can see my blood test results from 2005 thanks to NHS app and they make interesting reading. TSH commonly 6,7,8 when the range is up to 4. All marked satisfactory no action. Now I have developed other conditions I wonder if that is due to being under medicated for so many years
No need to wonder any further.
One thing that occurs to me is that even when a celebrity pops up and says they have thyroid issues, they are newly diagnosed and spouting the NHS line that levo works and is all you need. They haven't done any research.
I think medics in the UK are taught it’s a condition usually affecting ‘women of a certain age’ and it’s immediately disregarded especially as they’re also taught Levothyroxine solves everything and is cheap. That was even before they decided the only test they ever need to administer is a simple TSH score where any number under 10 can just be ignored and does not require treatment.
“Fair Fat and Forty” or even Fifty! I was thirty and did not have gallbladder issues. So far over forty years later still no gall bladder issues. I bet this is still taught!
They still do. I was 55, 9 stone and 5ft 8ins, but I am fair, going on see through. They had the scan of my kidney showing it growing extra bits but still said it was my gall bladder...
They dole out Levo to anyone they think is hypo, and that is the end of that. But what puzzles me is that many must return to their GP asking for further help, and are just doled out more levo. I think that is where the "women and their hormones" kicks in, they are not really ill, its all in their heads etc.
The very same questions I've been asking. I had undertreated hypothyroidism which caused me another autoimmune disease, Primary Membranous nephropathy. Due to the ignorance and reluctance of factors to listen and investigate.
Article “Why is pain so common in vitamin D deficiency?”
Why is thyroid so different?
WHY ARE SO MANY OF US SENSITIVE TO WHEAT/GLUTEN ?
So why are folk taking meds for Hashimotos?
