I can not get my head around how so many people with other diseases are treated so differently within healthcare that should amount to the same levels of care with monitoring for us, and many people are able to have ‘normal’ lives.
Why not us? Will it ever be our turn to thrive? Is our disease just not sexy enough?
Well, you hit the nail on the head, there. It's not sexy enough. And there was one doctor that actually said that, thyroid is not sexy. Personally, I don't find any disease sexy, but that's just me.
And doctors are taught in med school that thyroid is 'easily diagnosed and easily treated', no big deal, in fact. And we patients that moan are just making a fuss about nothing, attention-seeking (although why anyone would want attention from a doctor I cannot imagine) hypochondriacs, that's the way they see us. They just don't believe it can be as bad as we say it is. So, there you are. I can't see it changing in my life-time.
Maybe they are treated similarly badly and we just don't know?
HealthStarDust it never ceases to amaze me just how appalling the lack of treatment for people with thyroid disease can be. The testimonies that we read on here can be truly shocking.
I was lucky enough to get a diagnosis with a TsH of 5.8 and the gp increased my levo taking into account my symptoms.
Things went down hill when we moved and the next gp practice tried to treat me according to TSH which was too low in their opinion.. Then I found this site and was able to educate myself and advocate.
We moved again but I was successful in getting T3 added to my scrip. There have been some bumps on the road. At times I do wonder as I get older will I still be able to do my own blood tests, manage my medication and do battle with the gp pharmacist who now seems to have taken on the role of trying to change my meds, obviously in the interests of saving money, not in the interests of my health.
It will b interesting to look back 10 years down the road and see if anything has changed!
I don't think it is just we thyroid folk who are treated badly. I am beginning to find out that getting a diagnosis/treatment for functional B12/macrocytic anaemia is equally difficult.
Pernicious anaemia sufferers also have their treatment "rationed" with many patients having to self source and self fund their own B12 jabs.
I'm so fed up with battling against a system which doesn't listen/dismisses us/diagnoses us with a host of irrelevant c*** instead of just letting us have what we need and enough of it to be able to function as best we are able. 🤬
Yes PA is another poorly understood, poorly treated condition, even the antibody blood test is notoriously inaccurate. Lots of people report having jabs rationed or removed altogether and plenty have to resort to self treatment. I find the NHS very poor regarding chronic conditions.
grumpyold I used to battle for my Dad re B12 injections, he used to have monthly and then it went down to 3 monthly and then not at all. He did have Crohns and then eventually Parkinsons. Its 5 years since he departed this life at age 94.
Same 😣 a consultant Gastroenterologist I spoke to the other day wrote ‘ B12 just low so don’t prescribe B12 injections’ this was in a letter to my GP! I’m not low I’m deficient 🙈🙈🙈🙈🙈🙈 I am not absorbing B vits! One bonus I suppose is I’m getting a endoscopy!
Why does it have to be such a battle 😥.? I sometimes wonder why they decide on medicine as a profession when all they seem to do is spout " computer says NO." Their hands aren't always tied. They could help if they wanted to.
Thinking of you for the endoscopy. 🤞
Thank you and yes! My Gp is a partner in her practise but dithers! First she wrote to a haematology (received standard we don’t do B12 stuff) then she said ‘you know your own body’ 🙈 then gastroenterologist! Who was frankly useless 😣 but like you said fingers crossed 🤞 something might come of this 🤔☺️
Honestly, makes one despair! I have had severe back pain for over a year. We all know that can be a symptom of B12 deficiency but my GP referred me to the East of England physio team. They sent me a text with a link to download an App to book a 30 minute telephone appointment. WTF use is a telephone appointment? We just gonna talk about how much my back aches, not investigate possible physical causes? 🤬
I suspect the following list provide some explanation:
Thyroid is seen as a disorder which was solved many years ago and for which there is a known and simple treatment;
Thyroid is not often life-threatening in the short term;
Thyroid is seen as a women's problem. This ends up dismissing women because they are women. And dismissing men because they are less likely to have a women's disorder.
Thyroid is not seen as having a clear symptom profile and is easily missed;
Thyroid testing is full of technical and logical pitfalls;
Thyroid medicines are not prescribed on a rational basis, rather a rationed basis;
Sequelae of thyroid are often not recognised as such but dismissed as being unrelated.
Is there a source for that, helvella? So true.
Mostly other people - here and elsewhere.
helvella, fantastic response. I wonder if the old method of diagnosis, raised cholesterol, was any better. I do think docs took more notice of symptoms and of course we would always see the same doc so they got to know what you looked like and how you were. They would put a hand on you to check your pulse, examine inside eyelids and look at fingernails for low iron etc. hands on seems to have gone!
For me the biggest issue with symptoms was how they chopped and changed and then came back again. Like your body saying "right this week we will concentrate on the muscoloskeletal system and get that feeling better" and then a couple of weeks later your hair starts falling out or you start putting on weight or you cannot sleep because your body temps is out of control and of course a lot of that can be mixed up with menopause too.
Its all blood tests these days, not symptoms, imo GP's have the same skill level as a child who can read, as long your bloods are in range off you trot.
Even if your bloods are languishing at the bottom of the range you must be fine. Funny though that lucrative depression diagnosis depend on symptoms, strange that.
The big problem is diagnosing anything based on cholesterol when some people do have hereditary hypercholesterolaemia.
I think we need to take both presentation and blood tests together.
But the way medicines have ebbed and flowed is a major concern. One moment a miracle drug, the next seen as dangerous.
The vitamin niacin has been used for cholesterol management but that also has side effects/adverse reactions -a brief extract re the nicotinic acid form:
These adverse effects can include hypotension severe enough to increase the risk of falls; fatigue; impaired glucose tolerance and insulin resistance; gastrointestinal effects, such as nausea, heartburn, and abdominal pain; and ocular effects, such as blurred or impaired vision and macular edema (a buildup of fluid at the center of the retina). High doses of nicotinic acid taken over months or years can also be hepatotoxic; effects can include increased levels of liver enzymes; hepatic dysfunction resulting in fatigue, nausea, and anorexia; hepatitis; and acute liver failure [2,12,29,37]. Hepatotoxicity is more likely to occur with the use of extended-release forms of nicotinic acid [12,38,39].
ods.od.nih.gov/factsheets/N...
Difficult when statins and niacin both have the potential for causing significant issues.
I saw a video explaining why the supplements industry has such a big success among women, and it was because women’s concerns are usually dismissed by doctors and we need to look for help elsewhere. And yes, since thyroid issues happen mostly in women, doctors just tell us it’s in our heads. Nothing has changed much in the last years, has it? That’s why I always look for options to go privately, there they need to listen since they get paid specifically for it.
There is no guarantee that private doctors will listen to the patient, be less dismissive, or be any kinder than NHS doctors are.
I paid to see a gastroenterologist and it was a total waste of money. And the doctor himself was really horrible. I'd done my research beforehand where the available comments were very positive. But not with me he wasn't.
Since I had to get a referral from my GP to see the doctor I wonder if she was really nasty about me in her letter, thus setting me up for a disaster before I even saw the man.
Do you have an NHS app ? Often you can find the referral letter on there ☺️
Hi there pity you can't see a copy of the letter - there is a code for the recipient - dear Dr x - I would appreciate you seeing this lovely lady or similar means he agrees you are a good patient - if it says Dear Dr. I would be grateful if you would see this lady (means something else !) My GP of the day told me this and was congratulating me on the term used !
Well put!
It’s not just thyroid patients, happens throughout medicine and particularly to women.
' Is our disease just not sexy enough?'
Until recently, all hormones were a 'hush hush' subject. Now, sex hormones in women have been 'glamorised' and are the main focus of a lot of advertising and public discussion. But no-one ever talks about thyroid hormones and the overarching effect these have on all the other hormones. As you rightly suggest HealthStarDust , thyroid hormones are not sexy hormones.
We just have to consider our vernacular in which we refer to "cardiologists" and "brain surgeons" as epitomes of medical skill and accomplishment. But no-one ever spoke of a thyroid doctor as an exemplar of the wonders of medical skill (and I do mean in general chit-chat - not thyroid-focussed forums).
I seem to think mental health illness was a previous ‘Cinderella’ , but is now at the forefront and even has some name changes reflecting that.
I was so poorly before Christmas that I requested to be signed off work. My GP said she can’t sign off under thyroid issues but she could if she put MH. Evidence of how the medics see us I guess.
Milkyway thats shocking. Hope you are on the mend now.🤗
Better than I was thanks, crimple. I was shocked at what the gp said though, implies nhs are blatantly admitting they don’t believe patients have symptoms due to not having a working thyroid.
Milkyway88 it never ceases to amaze me how they can dish out "depression" meds just by listening to you but they turn deaf when you want to discuss your thyroid symptoms and refuse to increase meds etc no matter how much evidence you put before them.😡
Dumbing down seems the name of the game. Fit healthy people are not good for business 🌻
I believe dishing out anti depressants means the practice gets more funding. This was certainly true when I was reading old forum posts. Thyroid isnt sexy, nor does it attract government money.
I keep listening to the late and great Dr Midgely supporting the lady who spoke out in parliament (Scottish).
On another forum patients are equally dismayed by the antipathy towards hypos.
Well said, I was diagnosed with an under-active thyroid over 20 years ago by a locum doctor. I’d previously been told I was borderline but it has never been explained to me by any health professional, all the knowledge I’ve gained has been from these types of forums and researching myself, I never get told what my blood tests mean nor am I given them unless I ask, hence I still don’t fully understand them.
If I’m lucky I get yearly blood tests I’d been on 50mg for years then last year it was increased to 75mg by a GP over the phone and also told I’d been taking it wrong and instructed to take 30mins before food with water. (I’d been taking it with milk from my morning cup of tea). I don’t even think we have specialist doctors at the local hospital it is disgraceful.
How I relate to this . After being told I had post natal depression 35 years ago a new gp tested my thyroid and I was recalled for another blood test as they didn’t believe it was correct . Not that I got to know what the results were . From then until now I have had spells of not feeling too bad and not being able to function at all . First few years I wasn’t told to take 30 minutes begire food and took them with my breakfast. I used to get 100 tablets at a time in a little brown bottle . I can see now my blood results only done yearly were not great . But nothing was ever done . I used to visit gp often with various health problems . I can see now they were thyroid related . With help on this forum I am now feeling as well as I can with the other health conditions I have developed. Who knows if many years of incorrect treatment has contributed to these conditions .
Exactly. What damage is done through years of being misdiagnosed, undiagnosed or poorly medicated? I've been undiagnosed for decades and am pursuing this line at the moment in order to - finally (fingers crossed) - get treatment. It's a battle that just goes on and on...
PS I think possibly parathyroid patients might get even less recognition and there really isn't even a little white pill to take every day. And lots of doctors seem to have selective deafness to the "para" part.
That’s very true but partly because most Drs have little to no experience of parathyroid disease and automatically blame symptoms on thyroid or other problems. Although my symptoms and results clearly proved a parathyroid tumour my Endo refused to accept it, luckily the surgeon was a wiser man !
And central hypothyroidism. The endocrinologist I spoke to recently (telephone consultation) was asking me -me! - how she could treat me if my TSH level was of no use 😯
Many moons ago I said that it used to be well known joke (amongst doctors) that if you were a hopeless medical student you ended up in dermatology. Presumably the acquired wisdom was that you could do less damage there. I think this ‘wisdom’ has transferred to endocrinology (apologies to the few wonderful endos people have reported back on to ThyroidUK). It’s a backwater run by ‘eminent’ idiots, keeping everyone back within endocrinology who would like to do good things.
And again doctors are lucky in their jobs. They rarely have any comeback from patients, as they can bury their mistakes.
Thanks to everyone who has posted. It would be an impossible task to reply to each.
What infuriates me is that I live in a country where the economy is suffering as a result of disability that could be avoided with timely and appropriate care. Surely that is incentive enough to care for us?
And, why can’t it be sexy enough to treat? Do we need a celebrity to push our cause?
I sometimes wonder if forums such as these are more of a hindrance to progress in health care with consistent stories of people self treating in numerous ways outside of the NHS. Not that people have been left with little choice.
It just does not make sense why we are so expendable. The only thing I can think of is by keeping us undiagnosed, and inappropriately treated, the pharmacy industry and it affiliates prosper by resorting us to a multitude of other drugs and treatments that may or may not provide short term reprieve.
You've got it in one!
It seems to me that our MPs are not blessed with the ability to work out priorities. It’s obvious from the patient’s point of view (or at least our particular groups point of view) that the amount of money wasted in the NHS is overwhelming. Too much cronyism and not enough intelligence to work out that their employers are us, the tax payers. That’s if we manage to be employed under the circumstances you highlight.
Welfare payments, if you can manage to get them, could save masses of amounts of money, to the taxpayer/government if patients were treated properly. We have become pawns that can be used for someone else’s ambitions. Blah blah blah.
Too many favours, I think having to be ‘paid off’ so MPs hands are tied. Even if they genuinely want to good, they soon lose their way.
I was recently in hospital. It’s like a city within the city of Newcastle. There is more human traffic in the hallways and waiting rooms than I see in the city centre or shops.
For this first time ever I will not be voting in the General Election. Each party is as bad as the other. I see no proof that any of the voting public’s priorities are being attended to.
However I just might be tempted to try to get on one of the hospitals board of directors - if only I could be sure to feel well enough on the days I need to be there!
When I was a teenager with menstral problems - its your hormones, it will settle
When I was a new mum with mastitis - its your hormones, it will settle.
When I was middle aged with menstral problems - its your hormones, it will settle.
When I had kidney cancer - its your hormones, but we will take the kidney out, it will settle
When I was menopausal - its your hormones, it will settle
When my thyroid failed - its your hormones, take this one pill a day, it will settle
Now I am old - what do you expect, go away.
Sere fact I want to say something but it seems you have it covered.
Where I am from, seeing a gp (or specialist, for that matter) is like playing the lottery regardless of health issue. Horror stories abound of patients being "mis"treated both medically and personally, sometimes escaping death by a hair. In Canada the third leading cause of death is medical error (if the statistics can be believed). From my experience diagnoses are personal opinions of the doctors. It is totally possible to see three doctors and get three conflicting opinions as in, for example, a fractured wrist and getting arthritis in that wrist. One doctor said there will be arthritis, the next said it's possible and the wrist specialist was sure there would not be arthritis. I think that covers all possible outcomes. With thyroid one doctor treats the patient and symptoms and one treats the numbers. The mother of a close friend had a bowel obstruction, was in excruciating pain and saw a different doctor every other day for two weeks. She always was sent home with different advice (one being to take Metamucil three times a day, which would have killed her). The seventh doctor personally accompanied her to the hospital (presumably so she would not be sent home again). She had to have all of her bowel and her anus removed in an emergency surgery due to necrosis and it is considered a miracle that she is alive. Despite of all doctors claiming to practice evidence based medicine, the approach can be vastly different. What I find lacking is medical humility in many instances. That is, in my opinion, what makes a doctor the most dangerous for all their patients. I would like to stress that there are doctors who absolutely do the right thing for their patients (like the seventh doctor above who went above and beyond), but in my experience they are rare. And they deserve a medal. It is also very common that a doctor is really, really good at one thing and absolutely deadly in another. That is probably what can be experienced the most. Doctors who are complete duds at everything are most likely also very rare. And, I think, being a doctor is a real sh*t job for many reasons. I shall not elaborate. Both patients and doctors are victims of a terrible "health"care system, as far as I'm concerned.
I dont know about Canada as your health care is very different to ours but certainly the NHS seems purely motivated by money ie saving money by cutting corners wherever possible. Now as a publicly funded via the taxpayer healthcare system of course they have to watch the pennies and be careful, however it seems they do that at the expense of patient health.
We currently have a high profile historical case where patients were given cheap US imported blood products which werent properly screened for diseases like Hep C, HIV etc. They or their families are now suing, which if successful is likely to result in a very hefty payout, which will probably cost more than if the NHS had coughed up back in the day in the first place and bought properly screened blood.
We see examples of cost cutting coming back and biting the NHS is the a**e all the time. But despite what they say, lessons are clearly not learned. Tbh its very tiresome having such a poundshop healthcare service. No wonder so many in the UK resort to going private.
It is very similar that way here when it comes to cutting "money corners", but varies from province to province. And we don't have the private option unless we cross the border into the States or loopholes open up, like an MD becoming and ND but then being hemmed in even more as far as prescription and procedures go (again varies from province to province). One province is known for "illegal" private practices springing up which then move further down the street or around the corner when about to be discovered. My wonderful healthcare provider is a nurse practitioner working out of an naturopathic clinic. I have to pay her, but much else is covered by Manitoba Health and what is not I also have to pay for (but it is not too much). I honestly hope to g*d that they never fill that loophole, because she is the best thing that ever happened to me in Canada. I would see it as a catastrophe if I had to find a doctor again.
You have written accurately. However I have not found ‘going private’ any better. I was hoping to be pleasantly surprised but I was extra disappointed having paid a hefty fee for the privilege, of actually getting less than no help.
Private is no panacea, no matter how you look at it. It’s full of many of the selfsame consultants as the NHS. Hardly surprising as that’s where they trained, worked, complained about their working conditions and salaries and it is reported in the press, finally go abroad to better working conditions and salaries.
Off course that is dreadful overview but it’s what we deal with all the time. I would like to say I prefer the ethics of the people working exclusively in the NHS which trained them but that is yet another blanket statement that is not true.
Heaven help us!
No I'm all too well aware private isnt always better, in some ways worse as you've paid for the privilege of seeing an ignoramous. But many people do hope that private is better, its at least quicker. And sometimes you have treatment options not available on the NHS.
I don't know about diabetes, but I'd suggest that endocrinology in general is not considered sexy. It's as if the people who like playing with chemistry sets decide they should become endocrinologists, but then realise that they have to talk to patients. Rather than go and work in a research lab, they then behave dismissively of us for the rest of their careers 
Obviously, there are exceptions, but they are the exceptions.
GPs I normally find are ok when you can actually get to see them (nigh-on impossible these days). Unfortunately, the senior partner at the GP practice I use is not one of the ok ones, having zero empathy, no common sense, and a weird need to meddle in things that are already being managed successfully.
I cant help wondering if there isnt a degree of ageism at play as well, type 2 diabetes and thyroid tend to affect older people. And older people aren't viewed as deserving of medical research. We aren't dynamic or exciting. Its not edge of your seat life saving, cutting edge stuff like brain surgery. Just the mundane replacement of hormones 😄
It's a shame Davina McCall can't do the same in the thyroid world what she has done in the menopause world and herself having hypothyroidism. If only she had needed T3 and couldn't get it prescribed and felt dreadful like the rest of us..she'd have been a great advocate The Davina Effect would have been marvellous for us. The publicity and education it would have brought.
I think we can lay a lot of blame on Advanz pharma and it's cronies for the disgraceful, criminal damage they caused to the thyroid world from greed. If T3 hadn't have been hiked up from £4 a box to £248 over the 10 years as they ripped the nhs off then treatment would have been so different. Fines weren't enough for these....I'll stop there!
Luckily more patients are now on combined t4 and t3 than the last 10 years and hopefully more consultants will be comfortable and happy to prescribe..that's as long as the price doesn't start getting silly again
Carol Vorderman would be great. She's recently been diagnosed with hypothyroidism. She's a great campaigner...
Hi there - oh how I can relate to your feelings about this - I fought and fought to get help back in the 1990's but to no avail - I went everywhere - Harley Street practically every endo Department in major London Hospitals but none would help me - my blood tests showed the 'normal' figure and TSH not elevated but I had over 100 symptoms and was desperately ill with my whole body breaking down and I mean breaking down - myxedema coma - I was about two weeks away from getting another chest infection and antibiotics being toxic to my liver - all due to my metabolism not clearing the medication fast enough when I decided I had to go outside of the UK to try and get help - which I did but by then it was over 15 years of ill health and my body has been damaged in so many ways as my renal consultant informed another consultant when he introduced me - this is ???? who wasn't given thyroid hormone early enough and now has very complex health issues - he tried so hard to help me and was over the moon when I finally got help - he was also very angry with endocrinology as my renal health improved so much as the blood supply to the kidneys improved their function. I have said this previously but I was told by a locum endo consultant when I asked ' look me in the eye and tell me I don't have a thyroid problem ' he said I can't because you do but I will be struck off if I prescribe it for you - I then said - you are willing to let me die to prove a point - he said nothing I can do - this was in the bad old days of Dr. S and Dr P who were also attacked for their views - it is a little easier these days but nowhere near perfect I know.
When I was trying to get help I went to see a Barrister in London to try to take the 'field of endocrinology' to court for not treating patients as they should - he agreed there was a case to answer but I wanted to do a group case not just about me - he said he couldn't really do that it had to be about me and then that would set a precedence and if we won, it would change things - but he advised me of the stress and how he would have to ask the hospital for my records (which in those days wasn't a common thing to do as it is now) and then you could get 'black listed' - he also said the stress would be immense and he didn't think it was wise to put me through that as I was so poorly in those days - although he was in agreement I had a case. So in answer to your question - why are we treated so appallingly - why indeed- is it because we get 'free' prescriptions/overloading the endocrinology departments - but what I can tell you is that these people are literally keeping the people of the UK sick and it is so very unfair - I met a lady some time ago who was in her late 60's - who told me how angry she was at being finally diagnosed with a thyroid condition and how she has a poor relationship with her grown up children because as children they had to put up with their Mother being exhausted and in bed most of the time - she said I cannot believe that's all it was and she said I am so angry ! Keep fighting all - I certainly still fight for you all where I can, writing to various notable people pointing out the error of their ways - it's the least I can do for those still suffering like I did for so very very long. A x
This story is familiar to many people on the Forum. One of the main issues I think, is the nature of our very illness. We are left open to our ‘abuse’ because we just can’t handle confrontation due to fatigue and/or brain fog. If you are like ‘Davina’ oft quoted, why would you bother? For all the work she has done for female hormones, she obviously has no insight into thyroid issues because presumably levo monotherapy works for her.
I have met loads of people now who ‘seem’ happy on their thyroid meds, who are in my view, not in a good place but somehow they think they are ok! Our situation opens us up to bullying by ‘proper’ people not! It’s shocking (to us) that medics fall into this category. Seems they can be just as small minded as any other human being.
It reminds me of all the hooha back in the eighties when all of a sudden the country woke up to the plight of ‘disabled’ people. Wheelchair access etc became big business. Prior to all those changes (and there are still problems) disabled people were entirely invisible, hidden from sight indoors, children in special schools, few openly disabled people in gainful employment etc etc.
I for one feel the guilt of being disabled but not in a wheelchair. I don’t think I show any signs of being disabled but my life is extremely curtailed.
APATHY ... APATHY ...WHY SO MUCH APATHY ......
The Patients Association Patient Experience Programme
Please does anyone know someone who was diagnosed hypothyroid .took levothyroxine and is back to their normal self 
Groundbreaking news day for lupus patients is a great day for Thyroid U.K. and all of us Former patients of the late Dr Gordon Skinner
