It appears to me, after much discussion with hypothyroid patients, friends, my newly diagnosed daughter and reading through this forum that the majority of people have the same experience...The nice guidelines that the GPs follow seem to leave people struggling for months as the reality of people's symptoms v the numbers is wildly out.
There is never a full set of bloods being done by GPs, we are therefore not getting a holistic approach, focusing on diet, vitamins, routine, exercise as well as medication.
The GPs only seen to treat until you are in range and not to the optimum levels for your age group, therefore leaving you still symptomatic and unable to function properly.
Is there anyone... Thyroid UK or any other official Body trying to address this with the medical profession??
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One would think that with 2 million people diagnosed and probably as many who are never correctly diagnosed and all the groups representing patients that the fervour would provoke reaction at every medical level. Afterall, we can’t all be hysterical, depressed, anorexic, menopausal hypochondriacs can we.
It seems to me there is an element of Orwell’s 1984 being applied.
This is very useful, thank you SlowDragon. I think the only way forward is a full, private set of bloods and a visit back to the GP well armed with a diary of symptoms and all the recommendations of best practice. I'm happy to do this to support my daughter, but it shouldn't be this hard for patients, especially those who find it difficult to advocate for themselves.
Going off at an angle, slightlly, although I am not a fan of NICE guidelines, It's not entirely their fault. I very much doubt that any GP has read them all the way through, they tend to cherrypick the bits that suit them, and ignore the rest. I lay the blame for our awful treatment entirely at the doors of the med school, that train them but ignore the fact that thyroids can - and do - go wrong. When GPs get a decent education, things might improve.
Do you mean there must be kickbacks generally or are you specifically talking about hypothyroidism?
If the latter, how would that work? By deliberately letting patients get sick by withholding thyroid meds, so that they needed a cornucopia of different, more expensive meds in the future?
Nothing would surprise me after my own neglectful treatment. Corruption runs so deep today in all aspects of public life. It seems unbelievable that Drs do not want to help patients, but that is the only conclusion one can reach given how badly they are treated 🤷♀️😫
I am quite certain that pharmaceutical companies manipulate prices and even medical protocols but as you say it seems somewhat convoluted to suggest that they in some way support the reluctance of GPs prescribe t4 and almost complete refusal to prescribe t3 - particularly when they charge crazy money for t3.
I think it important we really get to understand the present poor medical management of hypothyroidism. Interestingly the situation is almost identical with b12 deficiency. Namely the criteria for diagnosis is poorly understood and often not followed by GPs and the treatment when diagnosis is achieved is poor and inadequate. Clearly this again is not some weird "big pharma" conspiracy.
How many other cinderella conditions are there?
Why do powerful groups of specialist doctors become incredibly reluctant to move on in terms of disease management? They often hide behind "the science" and the need for RDB trials before changing anything. But they will happily make changes when it suits. Also the anecdotal experience of tens of thousands of people isn't anecdote. It's called data.
GP’s are influenced to diagnose via the QOF (quality of outcomes framework) which gives them points for diagnosis and prescribing for some conditions more than others and some not at all. It’s no surprise that depression scores highly, and interactive thyroid does not score…
Regrettably, what you measure will always shape what you do. If you get money as a struggling GP practice for diagnosing some things, you’re going to diagnose them in preference to others on a subconscious level as you’ll be looking out for those conditions more. It’s dangerous, but also very understandable 😞
So I’m not the only person to wonder. Not expecting anyone to read the full paper (I didn’t) but the bits I read would certainly lead to a conclusion that Big Pharma get to mark their own homework.
Yes, I see what you mean. But there is one bit that says doctors are allowed to use their discretion in treating patients, however a GP will tell you there's nothing he can do because his hands are bound by the guidelines, which is just not true. Truth is, they just don't want to be bothered, or they're just plain terrified by... dare I say it? Hormones! (Quickly, cross yourself and bring out the garlic!)
Comes down to the same thing, though, because presumably the practice guidlines are drawn up by doctors that know nothing about thyroid due to poor education.
It's worse than that Greygoose. Some of the most appalling poor research in recent years has come out. Like Personality D. And recent research about removing thyroid meds all together from female patients over 50, men over 60. The allegation that liothyronie and especially ndt products are harmful & cause cardiovascular events and osteoporosis. But as one nhs Endocrinologist recently told me when I asked him for e mvidence of these allegation re ndt he said "there isn't any because too few patirnts are on it!" And finally the nonsense of only TSH blood test.is needed and must be kept in range at all times....suppression frowned upon even though its a known fact that once T3 is added in suppression will occur for optimal treatment ir you end up under treated poorly and at risk of cardiovascular disease.....something the medical profession seems to have forgotten!A lot of the so called research is either small in size or is badly set up.
Treating patients optimally for each person has gone out of the window. It's mass treatment with set guidelines mainly based on the TSH : pre: advocating usually wait and see and at best levothyroxine. If you continue to feel unwell it's normal for that to be the case or its something else causing this or its all in your head.
We honestly need an active large scale protest. People are being left unnecessarily ill..Lives are ruined. Your option is sticking with what the nhs offers or pay up and hopefully find an informed practioner who believes in optimal treatment.
It's a national disgrace.
I speak as someone who was diagnosed over 20ysars ago and the decline in treatment options and poor approach to treatment is truly shocking. Has moved sucessful treatment backwards!
It isn't just NICE though, each ICB will have procedures. For example Gloucestershire's are kept on a website called G-Care, here are the thyroid ones: g-care.glos.nhs.uk/clinical...
And it includes this under 'when to refer': "Persistent symptoms despite treatment with levothyroxine (LT4)."
But I know from experience (I have been involved in developing specific G-Care pages) GPs don't always read it!
Ideally the medical profession would be trained by patient support groups like thyroid UK, currently most of the training is sponsored by drug companies who have a huge vested interest in us having poor thyroid care.
Good question. I work in admin at a UK university medical school.
I think that to improve thyroid patients' care awareness needs to start in making students aware of our symptoms.
I would suggest that the teaching of endocrinology clinical skills diagnosing is lacking but patients can volunteer at medical schools to address this issue.
Students are taught how to diagnose overactive thyroid by looking for goitre and tremor. I asked one of the tutors "But what about Underactive Thyroid?" To which the reply was "Oh you haven't got a hope in hell, that's very difficult to diagnose. " I was flabbergasted but not surprised.
If any thyroid patient wants to help our future medical professionals to learn about thyroid conditions - please volunteer at your local university, in a "Patents as Educators Programme"
These initiatives bring students into contact with real patients. Students learn to take a medical history from the patient to understand symptoms and how the condition affects the patient in their everyday life. The patient can explain things like how they may have been misdiagnosed and how this affected them etc.
Students gain confidence and become better doctors by interacting with patients. These volunteering programmes have good outcomes all round.
We definitely need to improve teaching our future GPs, especially about Underactive Thyroid diagnosis and treatment.
Thank you, my daughter is currently at uni and i too work for the NHS, so this is good to know, although I'm not sure she would volunteer!. Sadly she is only at the first stage of diagnosis. Waiting on a repeat blood test 3 months after the first one, so no treatment yet, very symptomatic and struggling.I think I will have to get a full set of bloods done privately and take those back to the GP.
Thanks Marz,I'll find out about the "Patients as Educators Programmes" around the country and make a new post. They all have differing titles so I'd like to be more accurate. Sheffield University's one is the biggest and It's been going for 20 years.
If you Google "Sheffield University Patients as Educators" you'll find it.
Thank you - will take a look ! I am in N Devon - long way from Exeter and Sheffield !! I was once in hospital in Bristol in '72 for 22 weeks. I was wheeled into a Lecture Theatre on a couple of occasions where the Consultant would present my unusual case to other Medics from around the area...
I hope you'd consented to that 😉.My Dad had similar experiences in the late 70s where he'd find his hospital bed surrounded by students with clipboards. He seemed to enjoy it!
😮😮😮😮😮Am stunned.....Sheffield are really anti T3 treatment! Have been for years. Will look their programme up. Clearly it's not spread to that department yet!
Thank you Stickybiscuit, I've found the information, how fascinating and certainly not something I was aware of, I will also share the information with my family & friends.
I'm currently being treated at the Hallamshire & Northern General and soon to be Weston Park (Total Thyroidectomy followed by RAI) so know the hospitals quite well, think this would be a good way of giving something back ☺️
Thank you for giving us this information. A two-way street would be better, and what would be helpful to the Patient, would be for Endocrinologists or GP's to refer the Patient to Patient Help Groups such as this, so they are not floundering in the darkness to begin with. After all, a few years ago Thyroid UK were recommended by NHS.
I don’t think it comes down to one factor or another. As someone who is considered medically “complex” (as in having multiple issues which may or may not be impacting on each other) I’ve come across problems with NICE and medical training in other areas.
Take asthma, for example - a condition which kills around three people everyday in the UK and which affects one in twelve of the population (so it’s quite common). The condition is managed through preventer medication (to try and keep it under control in the patient) and reliever medication (for when it goes out of control and needs rapid intervention). Current thinking in the UK is that in properly controlled asthmatics reliever medication should only be needed very occasionally (so maybe less than once a month). Problem is that if you need it to use it that infrequently you then just can’t order a new reliever inhaler on repeat because you haven’t requested a new one for over a month. This is despite the fact that the medics can clearly see you are asthmatic and need a reliever inhaler from the fact that you are still on a preventer inhaler!! Daft!!!
I’m fortunate in that my GP did put me on levo even though I am subclinical but a) I had been found to have bradycardia and (perhaps critically) that was first spotted, after two years of being monitored annually, within weeks of me being found to have gone subclinical and b) my GP understands statistics - not a common attribute in the medical profession in my (really quite considerable) experience of the profession. I believe that those responsible for medial training have finally woken up to the fact that some understanding of statistics (beyond the “one model fits all” approach) is actually quite important, but that is quite a recent development.
Then there is also the career path for medics in the UK which these days seems to be either become a GP or specialise and aim to become a consultant, very often with an area of sub specialisation. There is a lot of truth in the saying “the more you specialise the less you know”. So now we have a lot of very highly qualified specialists who no longer seem to have sufficient breadth of knowledge to join up the dots in difficult/complex cases. Inevitably this results in some patients (an increasing number I suspect) going back and forth between GP and different areas of specialisation as the profession tries to find out what is wrong. And I wonder, I really do, how many of those patients get labelled as hypochondriac, having anxiety issues etc as they get passed back and forth by the profession until the cause is found out. Don’t get me wrong, we do need specialists but we also need generalists - currently a very rare breed.
It was actually first picked up in 2023 at an annual (private) health check. I get an ECG as part of that which is how it was found. I wasn’t told about it on that occasion but it was forwarded to a cardiologist for checking who apparently came back with words to the effect of “she’s small and she does quite a bit of exercise. No action required.” To be fair both of those comments were true- up to a point. I am small (5’3” with a BMI of just under 20) and I was doing exercise, but I’d been forced to pull back on the aerobic side a few weeks earlier due to breathing issues which I suddenly developed which did not feel like asthma (though my respiratory cons reckoned it was that when I mentioned it him). I said within weeks of that ECG it was found I had gone subclinical- in fact thinking back it was days. At that same health check a blood test (done on a fasting basis at about 8.40 in the morning) revealed that I’d gone out of the TSH reference range so five days after it was done I received a phone call telling me to ask my GP to run further tests. As a result of those tests (FT4, FT3) it was considered unnecessary to place me on levo.
Fast forward to the health check in 2024 and another ECG. Because of the breathing issues I had dropped the aerobic exercise but still did a weekly ballet class (which counts as anaerobic exercise). But far from making things better the ECG showed a further drop, down to 44 - which is definitely considered too low for someone with my lifestyle. I was also still subclinical. It was suggested I talk to my GP and that was when the decision was made to try me on a low dose of levo.
My understanding is that a low awake resting heart rate is fine if there is a good reason for it, eg being physically very fit - an athlete for example. But where it is unexplained by that it’s worth looking for a possible reason as it might be down to an underlying medical condition. Apparently hypothyroidism can cause it; I’m sure there will be others on this site who can explain why that is the case.
You mentioned you were found to have a resting heart rate of 40. That is very low. Do you ever feel faint, dizzy or tired?
Yeah, my heart rate at 18 was 58, but they failed my army fitness test as my heart rate didn't recover fast enough, in that it never got high enough to get anything to recover from. They had to go to the Central senior guy, as they guidelines didn't cover me...
Eventually it started falling to 54, 52, 48, and then 42. Gp thought this was great, although I was exhausted all the time, even having to spend days in bed.
Good to hear. I certainly feel more alert now. Before I was told about the bradycardia there were times when I’d start yawning just as an afternoon silver swans (for over55s) ballet class was starting. Not a great way to start a class.
I found as a patient you have to do your own research and then target where you want to be referred too. Originally this would've been a gps job but I think medicine is now too complex for a Generalist to be able to do this......or it just doesn't happen effectively. Coupled with specialist departments who frequently bounce back referrals or don't see the patient themselves but evaluate based on a written document from a GP.
I’m not talking about generalists on the level of GPs, I’m talking about consultant level generalists - and they should be the highest paid medical professionals of the lot!
Many years ago I had the privilege of being taught basic anatomy by a man who had been known as a brilliant generalist (even though he had headed up Cardiology at the hospital where he worked). What he understood was how the body worked as a whole unit. He used to tell us that one of his favourite songs was “The foot bone’s connected to the - ankle bone; the ankle bone’s connected to leg bone” etc simply because it brought home brilliantly how everything in the body is connected to everything else. He knew very well that a symptom in one area could mean a problem in another, seemingly unrelated, area. That is the level of skill and knowledge that is, I think, either under-rated now or, if taught, is forgotten or overlooked by far too many as they go through medical school, specialise and then sub specialise.
And going back to GPs and what they know/capacity to use joined up thinking—there’s actually a sign up in my GP surgery that says you can only discuss one symptom during your consultation.
I mean… WTAF? If you have a broken arm that might be possible. But if you have something like hypothyroidism, which symptom would you choose??
They will tell you it's all in your head and give you antidepressants anyway so just pick whatever. That's why I have been through most doctors in my practice until I found the one who listens and doesn't adhere to 10 minutes or one symptom rule. Took me a while though...
I'd say I've come to discuss my hypothyroidism! 🤣😂 That's the one thing limit covered. 🙄🙄 One can only decide they dont differentiate between one symptom and one condition or youd have to einder why theyre there at all. Lol ......
I wonder if we should get our act together and get a petition going to get the whole thing debated properly? Too many people are having to self medicate and buy in their own medication. Surely there is enough evidence to support NDT let alone the call for better treatment and understanding from the NHS?
where I live, (Portsmouth NHS trust region) they will only test TSH, my GP a few years ago now requested T4 test, it got rejected as inappropriate request. I have never been tested for anything other than TSH, no T4, T3, vitamin D, B12 or autoimmune issues.
This subject is all up in my face at present, let me explain my experience.
Firstly I had hyperthyroidism which my GP couldn't diagnose....why i hear you ask, because he didn't do any thyroid blood work , concentrating more on my menopausal state😡, for nearly 2 years I presented to my surgery with what were obviously hyperthyroidism symptoms.
My son looked up my symptoms and it said hyperthyroidism, on my many trips to the surgery I alway seemed to get this GP [ head of his own practice]😡 I managed to aquire another appointment with another GP...who just said " I agree with Dr #### that your symptoms are menopause related, i explained to both gps about my fear it could be an overactive thyroid and was shot down immediately.
Up shot I collapse at home taken to the surgery where I see a new GP [ she just started 3 days ago] she takes one look at me, asks me to hold my hands out and promptly tells me I have an overactive thyroid...[ yeah no 💩 sherlock]
Later it's diagnosed as graves thyrotoxic and my poor thyroid is removed rendering me now hypothyroid 😡.
I stupidly think...hey well at least I'm going to be treated correctly now .....NO!! ho how silly was I , this is were my journey from hell continued now as a hypo patient , as time marched on I became very ill as I couldn't stomach the synthetic T4 or T3 ,my bloods were awful, but did my GP care no!! [ the GP who diagnosed me left the practice after 4 wks , so you can guess who's care I was put back into...yeah the GP who couldn't diagnosed me😡.
So....I struggled on for 5 years...yes count em 5 years without any help from my GP or endocrinologists it was the same old answer everytime.." you must try to take the thyroid medication "
I was.. but it was causing gastric problems and absorption problems , my bloods were always terrible hypo..
So my lovely son gets me to a private clinic where I'm now on ndt, of course my son is paying for my thyroid medication as I can't, but the clinic informed me to let my GP know,
I do and are told .." we don't recommend you take ndt as the nhs are not licensed to pescribe it"
I ask the GP to look over my bloods...she does.. finding them coming into range, what she didn't know was I'd take 2 months supply of ndt before informing her😁 she attributed my thyroid blood work to the T4...which I'd not taken for over 2 months, so in effect I had her hook line and sinker.
She arranged for futher bloods some 7wks later which showed 2 of my thyroid levels now in range but T4 slightly out, she immediately jumped on my TSH [ the golden cow for GPS and endocrinologists] saying its dangerous to see a low TSH or suppressed one..😡 that old donkey..
I also have primary hyperparathyroidism and the last 6 years I've fought as best as I can with GPS and endocrinologists [ who by the way have now told me I can no longer be treated for my thyroid condition with the surgery because im on ndt..🤦♀️] where as the care gone?
The amount of times I've had the nice guidelines pushed in my face by the GP or endocrinologists is without doubt insulting , I'm honestly sure they use them to there own advantage.
Example atm I'm under an nhs parathyroid surgeon she was recommend by a private parathyroid surgeon I saw in Oxford, but couldn't afford the parathyroidectemy he would have performed if I'd paid him.
Although she is a lovely lady and she as done way more than my current GP or endocrinologists have , she always quotes the nice guidelines pertaining to primary hyperparathyroidism.. in that your calcium as to be over 2.85 your pth as to be very high and a target of the Adenoma world be needed before any surgery would be considered.
This lady I'm under is herself appalled at the nice guidelines and always tells me " although your blood tests indicate primary hyperparathyroidism, your calcium as not been over 2.85 twice 🤦♀️and atm I can't identify the Adenoma " she honestly says this like she's memorised it , she herself looks sad when relaying it to me, but she always says.." I'm so sorry but I'm tied by these silly rules, which myself and the private parathyroid surgeon in Oxford are trying to get changed "
Good luck with that 😔 because what I've discovered is this board are full of old men who don't want to change the guidelines, we have a site for primary hyperparathyroidism suffers the lady who set the site up as tried time and time again with very good proof the nice guidelines are out of touch with both thyroid and parathyroid conditions.
Now that's the nhs stance on primary hyperparathyroidism, not the private parathyroid surgeon in Oxford...so why can he dismiss the nice guidelines? But the nhs insist on them being followed!!
This also applies to any thyroid condition.."ho your thyroid condition doesn't fit in with the nice guidelines so therfore we can't treat you, eventhough you are showing symptoms 🤦♀️
The whole nhs system needs stripping back and started again, with common sense and better training for GPS and specialist's.
Time as Marched on since the incarnation of the nhs and the rules it applied, it's about time it caught up with the real world 🌎
Sorry for the long reply but it's something I'm passionate about ❤️
“…this board are full of old men who don’t want to change the guidelines” - yeh, probably because they are from the generation who were taught a “one model fits all approach” when it comes to statistics.
”…better training for GPs and specialists”. Completely agree, but even if that starts now, it’ll be ten years before we begin to see the results due to the length of time medical training takes.
yes...the lady on our parathyroid site as contacted this board several times with as I say firm proof they are out dated ...bit like those old men who sit in judgement of us suffering with these conditions.
Well as for better training, better late than never would be a start, but even better, why don't gps and endocrinologists just listen to their patients?, they may just learn something from us suffering with these horrid conditions 🤷♀️ but heaven forbid you tell a GP or specialist there job....it's off to the loony bin for you😔
Mine is the ICB......I have the nhs specialists lined up in a row all saying yes needs to continue ndt. (been on ut 17yrs) ICB says no and quotes......yep....Nice Guidelibes & the rest that quote NICE. By the way the 5th endo (one who works under the ICB) said no to bdt but admitted there is no recent research on ndt to say its dangerous....can't do it as so few on it. Doesn't stop NICE dishing it out though!! Lol
As you know I'm also on ndt paid for by my son I've now got my T3 in range and TSH in, but T4 needs a tweak.
But my intention is when I do get them all in optimal rang and they remain constant I'm going to complain my son is paying for my thyroid medication, a medication I need for life.
This is not acceptable, I have a right to good health care through the nhs I'm not receiving this at present, ndt has proved to be the thyroid medication I need to mantain my health.
Birkie so happy ndt is working for you. When you put your complaint under make sure the Health Secretary is fully aware. You will be directed to the Heakth Ombudsman. When I rang them they told me it would take 3years..... due to long waiting list.
Well technically he's disbanding the nhse.....but in reality he's bringing it back under the government with a reduction of staff and no doubt a brand new name. I'd like him to disbanding the ICBs who have no one monitoring them and they have no one checking any standards ...hence them doi g what they're doing.
We’ve got a lost generation of doctors. I’m not actually sure it’s even possible to replace the knowledge of those who went before them.
It used to be that a large proportion of what a doctor used to know was taught on the job, passed down each generation of doctors as they came out of medical school, into junior roles and upwards.
But the funding model for universities changed in the 1990s—around about the time it was decided that anyone should be able to get a degree if they wanted one. An interesting idea, except foreign students paid more to a university than a UK based student—so, many of the universities filled their yearly intake allocation with foreign students, with only a fraction of UK students getting into medical school. Many, despite excellent A’level grades, couldn’t get a place at uni.
Now admittedly, some of the foreign students stayed in the UK after graduating but many didn’t. And even the students from the UK tended not to stick around, with many going straight to countries like Australia after qualifying, where conditions were far superior to those they’d have in the UK.
I am generalising massively but I know this to be true for the late 90s/early 00’s—it was openly acknowledged when I was doing my nursing training. Twenty years on, there are far fewer experienced doctors working in the UK for the latest tranche of new doctors to learn from.
Book learning only takes you so far. The mantra for learning how to do a procedure used to be “Watch one, do one, teach one”—but if there’s no one to watch, how do you learn?
Impassioned and moving post Birkie , I can feel your anger. I shall, perhaps controversially, risk saying if 90% of sufferers were men not women the picture would be very different!
I can't also help but wonder if this is a female thing. So we are being dismissed and left to struggle because we are female. A man's illness would be taken more serious?.I do wonder....NICE just seems to be used by GPs as a get out of jail card for doing nothing.
I think I've followed without knowing a very standard format. Menopause symptoms working in a stressful workplace because I have to pay the bills. Then my elderly parents started their end of life journeys over approx 3 years....even more stress trying to look after them and work...enter Hashimoto's and rising TSH...but despite all the main symptoms ....no treatment. Over 10 twice but only 6 weeks apart so they won't treat me!
I'm considering contacting my MP to see if they can take up the banner for all of us. I doubt it, but got to do something.
funny you should mention the man thing...if we were men they wouldn't treat us this way.
In relation to primary hyperparathyroidism.. it effects the bones rendering them brittle either ostiopeania or osteoporosis, now men don't normally suffer that kind of bone loss, only women, which is a consequence of the menopause and thyroid and parathyroid conditions.
So men on our parathyroid site get a quicker diagnosis than women, simply because they have developed some bone loss , where as us women are told " ho it's the menopause causing the bone loss and hair loss, when in fact it can also be thyroid and parathyroid related.
but gps and specialist's take one look at a women and immediately label us a menopausal..no further Action required 😡😡😡😡
I do have a male friend who got the same kind of dismissive behaviour so many on this site describe when he became subclinical. In his case there was also clear family history of hypothyroidism in men (father and an uncle, I think). So no - it is not confined to women patients - or it wasn’t in this case. He did eventually get treatment, but only when he reached the “magic” number.
Yeah thyroid is hard to diagnose for both males and females, but in primary hyperparathyroidism if a man has bone loss ostiopeania or osteoporosis, it's usually due to one or more parathyroid glands going overactive with high calcium. Men get diagnosed quickly if a GP sees bone loss
If its seen in women the GP automatically thinks it's menopausal.
I had the DEXA scan for bone loss, it showed ostiopeania in the orange zone🤷♀️ but I have primary hyperparathyroidism, my calcium as been going high for years, but my GP said my ostiopeania was due to the menopause totally ignoring my diagnosis of primary hyperparathyroidism 🤦♀️
hi - my mixed experience of NICE is that it is hampered by its methodology, blinkered by inflexible search criteria, limited by criteria and standards that sometimes only generate a handful of studies on which to base conclusions, and experts are cherry picked to reinforce status quo to make the process as quick smooth and uncontentious as possible so it can work to allotted timeframe. The overseers are strongly resistant to change critique/ different views and not as independent as you may think. But that is where the power lies and from which nhs practice follows. It takes a brave clinician who has the energy to show they considered the guidelines and had evidence to show a different treatment/or a referral was needed. It can be done and That is where we may need to focus effort - to make it easier for them to work differently. What difference the ICB changes will make is anyone’s guess. But we need to give indiv GPs the tools to work outside inappropriate guidelines and patients the tools to know who to ask for (as with the consultant list)
My parathyroid surgeon and the private one I saw are trying to change the nice guidelines on parathyroid illnesses, they have been met with ignorance, stubbornness and a total lack of interest by these old farts that run this board.
Both have presented cases of parathyroidectemys performed on patients who's calcium and parathyroid hormones never reach these stupid guidelines, but yet they still find the rouge Adenoma within the patience's neck, and in 90% of cases the patience is all but cured.
Wouldn't you think they would be happy to cure parathyroid patience's of there misery, surely this would mean we wouldn't be burdening the nhs complaining about our awful symptoms , taking up gps time ...get us cured...change the flipping stupid guidelines and that also applies to thyroid conditions 😡
you’ve hit the nail on the head and summed it up . I’m one of these who have been on medication for decades and never understood why I still felt tired, cold , lost eyebrow hair etc why my levels always came back normal. I didn’t realise about vitamins or ferritin levels until I joined this group a few weeks ago and asked my Dr for specific tests which showed up I was lacking in many areas. The Dr still said I was ok even though results were abnormal and I had to show her what Thyroid Uk had told me and then she listened . I don’t feel confident at all . I’ve also found out I have Hashimoto’s Disease this week but the Dr’s haven’t said anything about that.
Hopefully something will be done to change what happens when people are tested for their thyroids at the Dr’s as it’s so important and if the thyroid medication is for life and free because it’s so important then more should be done about it .
Nothing will be done if we don't all stand up and protest very loudly!! Get it publised out there......get Wez to dit up and take notice!! The plan is to take even levo off the over 50s.
Recent research has shown that women over the 50s may not need thyroid medication any longer.....it can be withdrawn. For men it's over 60s. This is because all people need less thyroid hormones as they age. No plan to implement it nationally yet, but there are trials with GP Practises implementing this.
Another thing that we can do is volunteer to become Experts by Experience (other titles are used too like Patient Partners) with our local trusts or join our Patient Participation Groups at our GP surgeries. I started out with PPGs 10 years ago and moved into being an ExbyEx with my local hospital trust 6 years ago. Opportunities are advertised for us to join in with developing new services or reviewing old ones. It took me a couple of years but I am now on a Clinical Pathway Group with the ICB for MSK conditions where I put forward the patient view.
The number of times they will merrily talk about something and then I come in and say, 'You know don't you, that that isn't what actually happens when you are a patient?'
If anyone gets the opportunity to volunteer in this way, it is super fun, and there is a great feeling of achievement when it brings the patients' voice right into the very heart of planning in the NHS.
Normally I would say they have ExbyEx at NHS England too, but no point in doing that now as as of the last few weeks all the programmes have been drawn to a close.
I’m trying a bloodwork company in the US called Function Health to give me more numbers and food recommendations. It’s very thorough. It’s out of pocket, though.
I am hoping RFK Jr here in the U.S. will, but there is a great drive by established Healthcare to get the U.S. in a National Healthcare System before that can happen . Maura Healy here in MA U.S. is leading the charge and well on her way and lining her pockets all the way!
One in 20 people in the UK have a thyroid problem, with women six times more likely to suffer from the condition than men. Posing serious implications for the physical, mental and emotional life of those affected, thyroid patients are at greater risk of experiencing long-term sick leave and impairment of working ability.
The team from the Business School’s Centre for Labour Market Research worked with the British Thyroid Foundation, Thyroid UK, the Thyroid Trust, Thyroid Patients Advocacy UK, the Improve Thyroid Treatment Group and the charity Miscarriage Support (MISS) to circulate a survey across a UK-wide network of sufferers.
The study gathered data on almost 1,200 patients’ experience from the onset of symptoms through diagnosis and treatment and beyond. In total, 95% of the respondents were women.
It found it takes an average of 4.5 years for a thyroid condition to be diagnosed, with this taking considerably longer for patients with hypothyroidism. In most cases (almost two thirds of respondents) it took multiple appointments and a worsening of the severity of symptoms before a diagnosis was made.
Even once treatment has started, a staggering 92% of patients still experience multiple symptoms, most commonly tiredness and slowness (79%), cognitive deficits (64%), and muscle aches and weakness (62%).
Unfortunately, there are many conditions that the NHS does not treat adequately or at all which are far more simplistic than the thyroid. This really is a political issue.
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suing these useless gps
Gps WONT listen
GPs. vitamins
GPs in Ireland 
Patients 'Struggled to See GPs' - Healthwatch
