Time For a Patient Union? No Matter What We Say... - Thyroid UK

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Time For a Patient Union? No Matter What We Say or Do, Abuse Continues. Docs are necessarily Protected by Lawyers, Has OUR TIME not Come!?

LindaC profile image
111 Replies

Recalling Dr Skinner's World Thyroid Register... where I now think formal representation is due across the board, but especially for chronic illnesses and where the thyroid is another ball game altogether. We need protection - please will someone seek to set this up? I'm too ill now... :-(

Having had the decency [or stupidity] to seek 'In-House Resolution' in 2021 re a catalogue of long-term abuses via a GP, I was immediately met with his 'Legal Beagle Protection', guiding him through it all to swat aside any patient. We have no such protection. Lots of apologies. Lots of retractions with letters out to relevant Hospital Departments but... who reads them and mud always - BUT ALWAYS - sticks!

Any agency set up to protect Patient Rights... ultimately, 'calls to the tune of their taskmaster'. We have no rights, as such, in these times and never have had. In this 21st C - where much of the 'care' seems to have gone from medicine [especially chronic issues] - we too need something for ourselves.

Just a thought. xox💚❤️💛🔍

Hmm, seems there's more of a problem than I envisaged!

111 Replies
marigold22 profile image
marigold22

Absolutely agree

LindaC profile image
LindaC in reply to marigold22

If not NOW, When!? xox

marigold22 profile image
marigold22 in reply to marigold22

And all medics are apparently still having to sign the Hippocratic Oath. What hypocrisy

helvella profile image
helvellaAdministrator in reply to marigold22

Not so! At least, not universally:

Is the Hippocratic oath still relevant to practising doctors today?

BMJ 2016; 355 doi: doi.org/10.1136/bmj.i6629 (Published 14 December 2016)

bmj.com/content/355/bmj.i6629

LindaC profile image
LindaC in reply to helvella

For me, there is no ALL of anything - there are excellent doctors out there - some have saved my life! We are, surely, aware of the shortfalls of thyroid medicine?

helvella profile image
helvellaAdministrator in reply to LindaC

I believe that signing/affirming/whatever the Hippocratic Oath has dropped significantly within the UK. And the linked article was simply to provide some information about the issue.

Suvi8901 profile image
Suvi8901 in reply to helvella

it’s still applicable to U.K. medical graduates!👆

helvella profile image
helvellaAdministrator in reply to Suvi8901

I can't say I fully understand what it means to be applicable - but at the same time, it is not actually sworn by all doctors in the UK?

helvella profile image
helvellaAdministrator

Please try to avoid party political comments.

The Mental Patients Union, 1973

libcom.org/article/mental-p...

LindaC profile image
LindaC in reply to helvella

Apologies helvella, how is this political? OK, got it. Is it not about medicine and our lives?

What is The Mental Patients Union, 1973? Worked in MH for many years and never heard of it? Thank you!!!

I worked in a non-statutory agency, brought down by the statutory sector, which was certainly user-led. 'They' really don't like it!!

marigold22 profile image
marigold22 in reply to LindaC

I've been checking to see if there are any party political comments here. Totally confused

helvella profile image
helvellaAdministrator in reply to LindaC

The setting up of union would itself be a political act.

It is always difficult to draw a line between that sort of political and the siding with or against one party or another.

I simply asked that you, and others, avoid party political comments. That was in order to keep this thread the right side of that difficult line. I did NOT say you were intending to be party political.

LindaC profile image
LindaC in reply to helvella

Yes, I added to above that I'd 'got it'. Perhaps it is more LEGAL re our rights than 'political' [rather an extreme end of the scale, unusual for you]? Lip service is being paid to people who are often desperately ill, have been for years. decades and are sometimes sneered at. People need help.

helvella profile image
helvellaAdministrator in reply to helvella

A Guardian article from 2008 about the Mental Patients Union:

A crusade for dignity

Andrew Roberts recalls his involvement in the foundation of the Mental Patients Union

theguardian.com/society/200...

LindaC profile image
LindaC in reply to helvella

Thank you so much - albeit many try to get away with the 'all in their head' as opposed to ludicrous ranges are in their head, effectively if patient protection is to be seen as political, that is clearly just another...

Good old days ;-)
LindaC profile image
LindaC

What a joke! Hippocrates would veritably slap some of them! Sometimes feels it might be better to be back in the days of Ancient Greece!?

birkie profile image
birkie

hi lindaC❤️

Couldn't agree more, 👍 I myself were under a gp who for over a year kept 2017/2018 (2019) full thyroidectomy) insisting my symptoms were menupausal, when in fact it was hyperthyroidism (graves) I'd been saying it can't be menupausal, I'm sure it's my thyroid (I'd put my symptoms into the nhs Web site and it said overactive thyroid) but no matter how ill I became as the year went on, no matter I'd lost over nearly 2 stone he still denied their was anything wrong!

I eventually collapsed at home and my son got me to the surgery where a completely different gp diagnosed me on just looking at me and threw blood tests, I made a point to get an appointment with the gp who was fixated on it being the menupause, I thought he'd be shocked at my diagnosis.. But no.. When I informed him he'd missed this diagnosis he just said "and what can I do for you then" I politely said well nothing as I felt you needed to know my health issues now, he promptly typed out a prescription for more anti thyroid drugs and sent me on my way.. I am trying to build a case for a years neglect by this surgery, I also found in my records he sent some bloods to an endo in 2014, the endo wrote a report back saying I'd had a episode of thyroiditis with a short suppressed TSH and said it looks like subclinical hyperthyroidism, can you please do regular routine blood tests on her thyroid hormones especially in the face of her episode of thyroiditis, as far as I can see in my records he never followed this instruction up,.. I never knew about this report and found it in my records in 2020😠.. So who protects me from the gp who nearly killed me as I went into thyroid storm in 2019? , in hospital for over 15 days and eventually lost my thyroid in May 2019. 🤷‍♀️🤷‍♀️Who protects us...... 😠

Gingernut44 profile image
Gingernut44 in reply to birkie

The answer is “nobody” even when one Doctor knows another has been negligent, they close ranks. My surgery medical records have been doctored more than I have.

LindaC profile image
LindaC in reply to Gingernut44

The general expression being: "They All P In The Same Pot" - it took me a long while to realise that this doesn't only apply to lawyers [most of us know that!] but I discovered over the last few years that GPs/doctors are 'covering their own backs every single day before any need to ever go to a lawyer'... their closed shop mates will do the rest for them. A Patient Union would certainly put them on their toes.

Gingernut44 profile image
Gingernut44 in reply to LindaC

I totally agree, you only have to look at what happens to whistle blowers in the NHS. It’s an absolute disgrace that “they” get away with it.

LindaC profile image
LindaC in reply to Gingernut44

Indeed, and to whistle blowers anywhere! Nail on head - my thyroid issues began after 'fighting' a whistle blower equivalent [L A intermeddling, acting unlawfully] for calling out appalling AND unlawful conduct within a well-established charity. [A Regional I T Chairman - in the case of a former Director, called it "The worst conduct of a Local Authority Office that I've ever had the misfortune to encounter". Another chairman + stooges, white-washed it right down the line.] They do all P in that [stinking, sloshing] Pot of The Boys' Club. Oh, they certainly do get away it! xox

birkie profile image
birkie in reply to Gingernut44

that's so correct, because when I was rushed in to hospital in thyroid storm because the anti thyroid drugs were not working.. I'd inform that gp who couldn't diagnose me about throwing the anti thyroid drugs bk, he insisted I just kept persisting with them.. Ended up in A&E in thyroid crisis, went in to a semi coma.. My T4 was 100 my T3 was 39.5 TSH suppressed,

When I eventually came to I spoke to the hospital doctor he was quite annoyed I'd not taken my thyroid meds, I explained I had been taking them but I was vomiting them bk.. He immediately gave me 6 tablets and told me to take them... I did not asking what they were 🤦‍♀️I spent the next 2 hours throwing up as he'd given me ptu anti thyroid drugs.. The nurses were busy that nite😂 but at least he now believed me.. He asked who the hell my gp was so I told him, nothing was ever done 😠 and the hospital doc couldn't believe I'd not been given an appointment with a endo or had an uptake scan... He arranged both, I thanked him for that saying "your far better than my general practitioner" 👍

LindaC profile image
LindaC in reply to birkie

Wahhhhhhhhh! That is so scary and, it seems, it's because they have no clue about much of this. So pleased you finally - life seriously at risk - got something done. There must be many other 'Thyroid Tales' - anyone willing to collate then - to put out there?

birkie - thank you - look after yourself xox

marigold22 profile image
marigold22 in reply to LindaC

Ten years of TSH 8 to 10 whilst on T4 only. Lost my job and my home. Joined this fabulous forum, requested my medical notes, discovered what my TSH was. All these TSH results marked as OK. Two consultant psychiatrists had no clue either, despite me telling them that I had hypothyroid.

birkie profile image
birkie in reply to marigold22

it's shocking 😱.. I want to see my gp who looked at my thyroid bloods in early May and abruptly said "your over medicated that's why you have symptoms (symptoms were actually of primary hyperparathiyroidism as my PTH and calcium had gone over range) my T3 was 5.3..tsh 0.05..I said no my T3 is in range, yes but Yr TSH is 0.05..so she decreased my T3 making me hypo😔.. And Now I'm hypo at 7.4..she couldn't give a 💩.. Doesn't even want to see me just sent me to the endo who prescribed liquid levoroxine which I'm still waiting to get... 😔 Doing ANOTHER letter of complaint that will no doubt be ignored, just finished a e mail to PAL'S that will be getting fired off today.. 💪

LindaC profile image
LindaC in reply to birkie

Vets treat dogs with thyroid issues better than this. This must be stopped... taking an NHS pay cheque - via the Public Purse - to do this to so many of us! Best of xox

arTistapple profile image
arTistapple in reply to birkie

The something that might have been done, pretty much on the quiet as I have been led to believe, is the GP might have been given a very embarrassing private verbal bollocking. Everybody in the system knows BUT patients don’t. It amounts to the same thing as closing ranks. Off course further perpetuating our dreadful treatment.

buddy99 profile image
buddy99 in reply to Gingernut44

I was shocked when I saw my records for the first time. Initially I thought that maybe there were quite a few misunderstandings and I needed to communicate more efficiently. Then I came to read about the pap test the doctor had been unable to perform and had, instead, suggested I take estrogen "to soften things out". None of that was in my record; all it said was that I had declined the test, which could have not been further from the truth. I felt like I had been kicked in the stomach and then I cried because I knew that that was the beginning of a new era in my relationship to doctors. On top of everything the doctor forgot about the lie and rammed me into the ground the next time for declining the test. Trusting doctors does not come easy to me these days. I'm not sure this can ever be remedied.

LindaC profile image
LindaC in reply to buddy99

So sorry and saddened to hear that - accountability must surely be on equal par with knowledge!? Horrific when you even considered the misunderstanding could be yours - many of us do - seems they don't do much of that!? Take care, be as well as you can xox

Oops, forgot to add - I was stunned when I read mine - even wrote a bound booklet on the errors, clinical and including gross discriminatory aspects.

buddy99 profile image
buddy99 in reply to LindaC

I now know they were not misunderstandings at all. The doctor had one goal; support the actions taken and the false diagnosis made. So, things were put in my record I never said or did. As far as I'm concerned it was just one big coverup of incompetence on the back of the patient. I was lied to and lied about so that the doctor could cover their rear end. Full stop.

Thank you for your compassion, LindaC. :)

LindaC profile image
LindaC in reply to buddy99

Exactly - experienced this!

Gingernut44 profile image
Gingernut44 in reply to buddy99

I’ve had “refused blood pressure test” on my records?? I’ve never refused to have my blood pressure taken. The fact was, the Nurse couldn’t get her ‘machine’ to work so went off to find another one which also didn’t work! Also, the date my GP decided to experiment by stopping my Levo for six weeks was a month later than the actual date. Now everything on my records is “coded entry” all apart from my vaccine dates and blood test results which I can now see in the test results page anyway. What are they trying to hide??

Suvi8901 profile image
Suvi8901 in reply to Gingernut44

Even the wording is incorrect, “refused blood pressure test”??

It’s NOT a test.👆

It’s actually a measurement!

Either by a doc/ healthcare provider who can use a sphygmomanometer plus stethoscope OR digitally as is the case now.

This is a blatant lie written by the nurse.

Bring this nurse to account one to one.

Unacceptable.

Regards

Gingernut44 profile image
Gingernut44 in reply to Suvi8901

I know, that’s not the only lie but everything has disappeared from my records now - “coded entry” is all I get. No record of the fact that I’m on T3 prescribed by my private Endo and only my Levo prescribed by the surgery 😱 none of his letters to my GP are listed.

LindaC profile image
LindaC in reply to Gingernut44

'Coded Entry' is not open access - ask to have this changed. Shocking...

LindaC profile image
LindaC in reply to Gingernut44

WoW! All of these 'mishaps' aka ???? could be easily solved. Where deliberate, if such people were FINED for such errors; that would soon put a stop to it.

Yes, I've had referrals to consultants [not Endos] with DNA [Did Not Attend to appointments that didn't even exist. On ensuring that was removed, yet another referral had the same garbage stated... under 'Diagnoses'! These seem to be the 'cantankerous' - clearly frustrated at their position - seeking to exercise 'power'!? NO THESE ARE NOT ERRORS and effort is taken to make their 'little point'.

buddy99 profile image
buddy99 in reply to LindaC

One of the problems with these "little points", as I found out, is that all other docs are warned off that they are looking at a difficult, non-compliant patient. And without ever having met them before, believing their colleague(s), doctors make up their mind, before anything else is said and done, that this patient needs a hard hand. Unless the patient moves to where the records cannot follow, they will continue to be treated as an unpleasant delinquent or a child with a tantrum.

LindaC profile image
LindaC in reply to buddy99

Absolutely! I'm in that boat... one tale passed on several times and, before you know it, you're 'cattled'. I've challenged so much in my Medical Records that, this in itself makes me look suspect... i.e 'they' couldn't have done so much 'wrong'. Whichever way... I know, I feel for you - wish we'd moved earlier - spend tooo long now dealing with them. Scoundrels.

JaneChapple profile image
JaneChapple in reply to birkie

Wow how appalling but you are not alone sadly. I see many patients on thyroid sites as well as this one so I am not surprised sadly.

I asked for a review of my T3 situation and after a call to the surgery about getting full on line access instead of one liners and was sent a patient contract to sign and told to find a more knowledgeable GP. Dont they think Id have done that if there was one?! Aldo told that I could not keep asking/discussing my long term chronic condition. I have hypothyroidism Hashimotos and atrophic thyroiditis. An private ultrasound last year showed 1cm lobes. I never did sogn it and they didn't chase further?!

My MP Ben Bradshaw wrote to the surgery 3 times and phed but no response.

I have my own Devon FB with 184 unhappy members, some of whom are rx extremely unwell, but their drs and endos dont care either. Every time I see another story like yours I get very cross and ask myself what can we do to stop these catrostophies from happening in the first place and when will things start to get better for thyroid patients both here and abroad. Sadly I dont have the answer but something needs to change somehow.

Best wishes

Janexxx😒🤓❤

LindaC profile image
LindaC in reply to JaneChapple

THAT is their level of contempt! Foul! Shockingly, APPALLINGLY Foul! Yes, I see it also on sites and frequently recall our Dr Skinner and Dr P who did so much - gave their all - for patients - with Dr S and his World Thyroid Register.

Nothing will get better until WE do something - relying on them!! and it's about to get worse. Take care, stay safe and as well as you can be. xox

birkie profile image
birkie in reply to JaneChapple

I've wrote and sent emails to my surgery complaining about my treatment, I've received no response to either, how can they justify not responding to patients concernes? Not only is it unprofessional but its downright rude 😠😠😠

LindaC profile image
LindaC in reply to birkie

Shocking! I take it you've asked for their Compaints Procedure? I collated a veritable bound booklet titled 'Request For In-House Resolution' to address several issues [most stemming from long neglected 2003 hypothyroidism] - it's rather interesting and funny! Check their procedures out and ask why!? xox

birkie profile image
birkie in reply to LindaC

actually one email was about complaints procedure, i asked at reception she told me to put it in writing to the practice manager to which I did 3 times with no response form anyone and that was over 4 months ago.. Receptionist said last time I asked.. Ho I think she's working from home due to covid.. Ok I said but does that prevent her from answering her e mails?.. No reply from reception... 🤯

Geogeor profile image
Geogeor in reply to JaneChapple

Has Ben Bradshaw ever spoken about it in Parliament?

That’s the piece of the jigsaw I don’t understand - how so much is known and yet also brushed under the carpet before it is assembled in the form of a report or guidelines or a must do better notice to GPs.

If Ofsted reviewed GP practices, they would say they are failing thyroid patients.

LindaC profile image
LindaC in reply to Geogeor

For sure!

LindaC profile image
LindaC in reply to birkie

WoW - I've got a few horror stories but NOTHING like that. It's the casual way in which they seek to dismiss us that's a huge problem! Like the school prefect - NO - Head Boy, who knows no one will do anything to him. These people have to be called to account - that was not just [the usual] sloppiness but bordering on/or negligence... then, go higher up that limited food chain to find a huge whitewash. I am so sad that you experienced such an appalling sh*t-show via someone treating patients as if they were swatting a fly!

Yes, WHO is to protect us? I'm hoping one of the fine people on here will have a few suggestions? Can't go on like this in 21st C, where most of us saw 'The Jetsons', 'Star Trek', and thinking better was to come! NO, in this field it can be just as bad or way worse.

Take care, stay safe [Covid still out there!] and be as well as you can. xox

birkie profile image
birkie in reply to LindaC

love the star trek analogy 😂 but Yr right.. I remember seeing bones using some gadget to cure a crew member thinking wow!! I wonder when that will be actual technology.

In fact in my opinion we have gone backwards,🤦‍♀️ even one endo telling me "we are good at our Job when you've been diagnosed, but we are awful at actually diagnosing patients 🤷‍♀️ yeah that fills me with loads of confidence 🤦‍♀️

Dizzy444 profile image
Dizzy444

I lost my lovely mother due to negligence, she was 62, I lost all my fight due to grief and holding up my father. My mother was a senior nurse and often said to me, we lose patients when we shouldn’t, but relatives are often ignorant of the fact or too grief stricken to do anything. I should have listened to her and fought the medical establishment, but they all stick together. I would willingly join any group who wish to improve the treatment of those who are struggling

LindaC profile image
LindaC in reply to Dizzy444

So sad to hear that Dizzy444 - tragically sad is any death, BUT when things could have turned out differently... I do hope you [and your father] did/are doing OK? :-(

Yes, many on these sites semi-survive, unfulfilled lives in comparison to their former selves... for the sake of shoddy, sometimes contemptuous treatment, Thank you for this. take care and be well. xox

birkie profile image
birkie in reply to Dizzy444

so sorry about you loosing your mother, 😞 I have total sympathy for you and your family ❤️

A similar thing happened to me firstly my father who never really bothered his gp lost his voice, because of his job talking on the phone a lot his boss told him to go to see his gp.. So he did gp said its laryngitis OK gave him lozenges for a month, didn't do much, he went bk gp prescribed lozenges again this went on for another 3 months until my mother went to his appointment with him because he could no longer talk, my mother insisted he be seen by a specialist, the gp was miffed but sending him saying "what do u think is wrong with you, do u think you have cancer" (laughing)... my mother said no we hope not.. Anyway it was cancer throat/lung he died 5 years later😠 you'd think that surgery wouldn't make that mistake again.. But they did with my mother.. She presented with a droped foot couldn't put any weight on it she had obvious symptoms which to me I thought was MS, the surgery for a year said ho it's her arthritis, turns out it was moto neuron she died the next year 😠.. Iost both parents to miss diagnoses by awful gps.. And I myself are under the same rotten system it stinks.. 😠😠😠😠

LindaC profile image
LindaC in reply to birkie

Oh my - so sorry - my father died of MND - all illness is dreadful, but that one... :-(

Yes, I've a Family Health Horror Tree reading like some sick joke book. Yes, it does stink, with my circumstances [not only thyroid] now worse than that of some family members IN THIS 21sr C! Take care, be as well as you can... I guess this is IT for so many. xox

birkie profile image
birkie in reply to LindaC

I'm so sorry you lost your father to this illness 😞 it is an awful illness, I saw my mother go from a slight arthritis suffer to a practical vegetable, she was diagnosed at Newcastle and when I was told it shook me, as my dad's sister died of mnd to, I explained to the specialist who diagnosed my mother, he was very nice but urged myself and my siblings to mention this to our respective gps, as it was on both parents genes, I can remember telling this to my gp ( not been diagnosed yet with graves) he just looked at me and said "it's not hereditary" 😠 so when I started with the tremors I became very worried as that was a symptom my mother had, she could no longer draw a circle, neither could I.. But gp never linked it to anything but the menupause,... That menupause as a lot to answer for🙄

1tuppence profile image
1tuppence in reply to Dizzy444

So sorry to hear this, Dizzy444. It's hard enough to lose those we love, without negligence being involved. Hugs

Regenallotment profile image
Regenallotment

I listened to a podcast from the US this morning, called the Thyroid Debacle. (Thyroid Healthy bites episode 32) Drs Eric Balclavage and Dr Kerry Halderman put it all very well. The current medical model is keeping people unwell. She says “We are living in times not of healthcare system, but a sick care system.” The focus is on acute symptoms not chronic. Looks like the US has similar issues, single symptom 15 minute slots, lab number based diagnoses, ignoring patient wellness. It’s not just a UK thing.

Been mulling over this all day, could Thyroid UK (with the necessary resources) get into all those GP surgeries with mail drop posters/flyers, and free training that is CPD accredited, medical school training sessions for undergraduates and deliver an update and upgrade your Thyroid knowledge programme? Into all those hospital labs that interpret blood tests and say ‘normal’. To host thyroid health workshops in GP surgeries in the same way there are pain management workshops etc for patients to come discuss and learn more about their conditions. Maybe a small pilot somewhere with a willing surgery could be used to try out what works?

🦋💚🦋

LindaC profile image
LindaC in reply to Regenallotment

Thank you so much for this - sounds really helpful and well thought out. IF someone could get the ball rolling on this, as you suggest, then a great leap forward will have been taken. Excellent - this sounds amazing - your efforts are much appreciated. Looking forward to any proposals you/Thyroid UK are considering - please keep us informed here. :-)

Sadly, the US used to be preferable to here but... guess those international collaborations have led to some 'shared views' on, ostensibly, nonsense. The biggest problem will most likely come from those dyed-in-the-wool power-trippers - operating without evidence, simply little notions that seem to fit with their needs - but nothing ventured... :-)

Up until 2013/14+ there was little no issue for any GP to diagnose [without strict adherence to silly ranges] and also prescribe ANY thyroid hormone [imported also] to help a patient to 'wellness'. Many seem not to know about this, but it certainly existed until horribly stopped by the aforesaid.... The growing tendency towards what we have now, stems from a hard-line stance ... long story.

Have you looked through the work of Dr John Lowe? Mark Starr, M.D. [Hypothyroidism Type 2]? Many more good doctors - including some of our own - were out there doing their best but it seems they have now been stifled. You certainly seem au fait with the clear idea that changes are really necessary.

Thank you, once more. 🦋💚🦋

arTistapple profile image
arTistapple in reply to Regenallotment

Regenallotment, yesterday I listened to the British Thyroid Association President talk on YouTube to GPs. I had to stop listening to his drivel at “Don’t send patients who just want to question what they have read on the internet”. (my own bold emphasis here) “The NHS is for people who are unwell”. Sorry I could not listen any further. I am shaking with anger just writing this.

humanbean profile image
humanbean in reply to arTistapple

Do you have the link? When I'm feeling masochistic I'd like to listen.

arTistapple profile image
arTistapple in reply to humanbean

I apologise to the community Humanbean; my computer skills are not good. I have just mastered referring to individuals on here when I want to mention posts when someone else has made related posts! The talk is very easy to find on YouTube. Dr. Simon Pearce talking to GPs. The talk was proving to be similar to the talk given to The Thyroid Trust but he was having a go at the GPs. I wonder what the GPs reactions were, or maybe they sensibly ignore him. Not a good sales pitch for specialising in Endocrinology. I was actually looking for the second part of Dr Pearces’ talk to the Thyroid Trust which, if as controversial as the first part, will be interesting for all the wrong reasons. If you are having a need to address your masochism - fill your boots.

humanbean profile image
humanbean in reply to arTistapple

If you want to refer to any video without a link the best info to give is the Youtube channel name and the video title - or at least the first few words of it. :)

But I think this is the video you are referring to:

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

arTistapple profile image
arTistapple in reply to humanbean

Yup that’s it. I will note your previous reply and see if I can manage that in future. Snapping your reply now!

humanbean profile image
humanbean in reply to arTistapple

There was a second video uploaded by the BTF given by SP on the same day as the one already discussed. It's about thyroid nodules.

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

arTistapple profile image
arTistapple in reply to humanbean

Thank you.

LindaC profile image
LindaC in reply to arTistapple

Oh my! Check out this one re Weetman - in a debate with Colin Dayan - nice bit of history in there too!

youtube.com/watch?v=y4J3ItM...

humanbean profile image
humanbean in reply to LindaC

I remember watching that one. It made me absolutely furious. And the attitudes to patients were also malicious and sadistic.

LindaC profile image
LindaC in reply to humanbean

Yes, husband [hearing it in the background years ago] still refers to him as *&^%. Not sure if he's still top of the food chain... ? Monty Python time?

humanbean profile image
humanbean in reply to LindaC

I think he's retired from the NHS and might not see patients any more. He's described as an Emeritus Professor in one link I found just now and as an Honorary Professor in another.

LindaC profile image
LindaC in reply to humanbean

🦕🔍 Oh well, perhaps some younger ones MIGHT...

arTistapple profile image
arTistapple in reply to LindaC

What was bad enough about this debate (in my opinion) was not the trotting out of all the old notions. However I was shocked by the lack of response from the audience. Only a couple asked anything. It was like scene from The Stepford Wives. Or sheep.

LindaC profile image
LindaC in reply to arTistapple

And on it goes... like a scene from Monty Python!? That is NOT down to respect but to fear and ignorance. The Late Sheila Turner [TPA] gave them what for. Unless people are informed [many of 'them' aren't and certainly not evidentially], they will be trapped into sitting there and saying nothing. :-(

Gnasher Against The World ;-)
LindaC profile image
LindaC in reply to arTistapple

Yes - this is how they seem to operate - and I share your anger. Never been into 'what they're paid' but we do anticipate a service reflective of such remuneration.

Good old 'Dr Google' - I've seen younger GPs use it themselves - is often a great source of information IF you can decipher 'Sh*t from Clay' [which I gather some of 'them' can't]. In this 21st! Often attributed to HG Wells: “Statistical literacy for efficient citizenship” comes from Samuel Wilks: “Statistical thinking will one day be as necessary for efficient citizenship as the ability to read and write!” Wonder why schools don't adequately equip their students!?

Not only do training doctors seem to need to understand Attitudes, also psychology [not the therapy type!] and philosophy/formal logic. Guess Hell will freeze over...

Geogeor profile image
Geogeor in reply to arTistapple

Good research to show that patients’ own Google / computer research improves the accuracy of their own diagnoses.

amp.theguardian.com/society...

He may not have noticed but every book in history has either been digitised or quoted from or summarised on the Internet. Am sure he wouldn’t tell people not to read about their conditions in a library or tell people living in a remote place not to seek out better info only available if they look online / speak to a friend. So why try to isolate already isolated patients further?

LindaC profile image
LindaC in reply to Geogeor

Absolutely - providing we can tell 'sh*t from clay' - we have something to go on OR at very least we have something... often better than nothing. Hypochondria is used to deter. Never considered 'isolating' - gas lighters do that. Thank you for this, Geogeor xox

Geogeor profile image
Geogeor in reply to LindaC

I feel sorry for his wife / partner - so much arrogance in one person is always used to project shortcomings and accusations onto other people, while they never perceive their own or have the humility to listen

Geogeor profile image
Geogeor in reply to Geogeor

Imagine being the chief specialist in a branch of medicine and also hating the people who need the medicine you choose to withhold from them this much that you then generalise them all as being people who look too much up on the Internet. You might as well say you have gone into medicine to make people unwell.

Geogeor profile image
Geogeor in reply to Geogeor

And imagine being a GP on the receiving end of so much hatred for and generalisation / speculation about the patients who suffer from a condition you see in practice all the time.

LindaC profile image
LindaC in reply to Geogeor

Oh, I'm not sure it's that contrived re GPs. Frankly, many are by now jaded; others seem to have little interest and - more significantly - many aren't so bright.

LindaC profile image
LindaC in reply to Geogeor

Indeed! Yet unless people/women are prepared to 'stand up' to bullying... this is what we have and get.

birkie profile image
birkie in reply to Regenallotment

Well put👍

But the training that's needed is over the range from GPS to nurses, if a gp or nurse can't see a patient is ill as is my case, I'd presented to my surgery numerous times with what were clearly hyper symptoms, I'd lost a great amount of weight, had a tremor, were sweating profusely, were jittery, had palpitations fast heartbeat ect, I'd been seen by my gp and several nurse practitioners and neither could diagnose me... Hell I even told my gp I definitely thought it was my thyroid but no he insisted it was menupausal, it turned out to be hyperthyroidism (graves) all the symptoms were their but no gp or nurse could see it.. Until I saw a completely different gp who'd just started at my surgery she diagnosed me on the spot and was in shock I'd been coming to the surgery for over a year with these symptoms and no body could diagnose me!! I hate conflict but it seems the only way you will be heard is to shout until the gp gets it... But it shouldn't have to be that way, also I feel because we are already ill and having to fight your corner we just go away, hoping we will become well on our own, when we know that will never happen 😠 gps fail many patients today and that's a fact 😠😠

arTistapple profile image
arTistapple in reply to birkie

That scenario makes you wonder if they would rather you ended up directly going to A&E rather than using their own time and alledged skills. Pass go. Do not collect your £200. It is truly terrifying that they can’t recognise something so life threatening - especially when one of the reasons for not prescribing T3 is one such imagined scenario. I had a particularly “bad turn” recently. A Saturday night. The dread of reporting to A&E on such a night and 111 not available. No GP like in the ‘old days’. Folks may be too young to remember such a service! A realisation that I must resurrect my GTN prescription, so I do not have a repeat episode. My first episode since starting levo. I will add here that GTN never works but it would clear my mind about bothering with A&E. So ……..

birkie profile image
birkie in reply to arTistapple

like yourself I've been feeling unwell for around 7 days I've been checking my urine as I have loin pain, feeling very sick, vomited bad headache, on Wednesday my urine showed protein and a small trace of blood, I managed to pop a urine sample into the surgery yesterday (I have CKD also) I got a call later on from the nurse who told me I'd put the urine in the wrong coloured tube, I asked if she could still dip it, she refused again saying it was the wrong colour tube, I told her I'd diped my urine that morning and it showed protein and a trace of blood, she still refused to do a dip test and told to come to the surgery to collect the right coloured bottles, I told her their was no way I could come as I was in bed with a hot water bottle on my back, I feel awful, she just said ho I'm sorry, just get down when you can, well if I still feel the same and don't improve today I'll need to go to A&E, putting more burden on them because she would not dip my urine!! Jobs worth comes to mind here.. 😠😠 Who are these professionals working for? And trying to get a gp to come out to see you is virtually impossible 🙄

LindaC profile image
LindaC in reply to birkie

EEK! What on earth... repeated across the land. 'Attitudes' [I used to lecture on - not telling people ;-) but the psychology of!] are everything. xox

arTistapple profile image
arTistapple in reply to birkie

There are just not the words in our world. We must be speaking an entirely different language!

LindaC profile image
LindaC in reply to arTistapple

Oh 'They' are - and don't we know it.

LindaC profile image
LindaC in reply to birkie

WoW! No, it shouldn't have to be this way - I'm thinking as much re tackling their blinkered B/W mindset. Then, when you do say stuff... they come after you.

Whole system needs re-evaluating from top to bottom. xox

MaggieSylvie profile image
MaggieSylvie

That's HUGE! But I agree that it needs to be put in place. I'm not diagnosed yet, so don't feel I can contribute much.

LindaC profile image
LindaC in reply to MaggieSylvie

It certainly is MaggieSylvie - AND loonnngggg overdue. Training is critical - also protection via representation. Thank you for your interest - best of luck - take care and be well. xox

arTistapple profile image
arTistapple

LindaC I have thought a lot about your post since I saw it yesterday. I so want to reply. I find that I so agree with everything you have outlined. Sadly I have nothing new to add, right down to the not feeling well enough to tackle it. I appreciate very very much the help I get on this forum. Thanks are not enough. However I know we need to do something to break this true deadlock of the patient being the least important component in the NHS system. Regenallotment has mentioned today that in this country too, that we moved distinctly into ‘acute’ rather than chronic illness management. This is something I have attempted to articulate myself but have never been able to do. Outspoken GPs have pretty much the same view!! Maybe there is a crack there?

LindaC profile image
LindaC in reply to arTistapple

Thank you Tistapple - me also - this forum is a gem with some highly knowledgeable people :-) Yes, acute medicine is still great - chronic, why don't they just quit the pretence?

Yes, something, somewhere, somehow has to give - this is beyond... Need to find that crack!

snow22 profile image
snow22 in reply to LindaC

was article in Sunday times about a month ago about NHS how although seen as sacred by some thus can’t critise, it is beyond mending or fixing and so we should be looking at a new system like that in Germany that works. Was a research paper by prof Nora Coton ?at U C L.

Also in Germany one can get l thyroxine etc - medicines that actually work and they have a better much lower TSH range than UK. Could we start by insisting on this?

I have seen others call our system one akin to the mafia/murderous. My experience too. Put in a complaint and they can refuse to treat regardless of what deadly complaint you have. Watch panorama hospital secrets uncovered.

LindaC profile image
LindaC in reply to snow22

Thank you - sorry and sad to hear that - great information, thanks for that also. xox

arTistapple profile image
arTistapple in reply to snow22

Thank you for that info snow22. I tried the Sunday Times article but was unable to get to that yet. The Panorama programme was so depressing/dark. Doctors are the lousiest administrators at the best of times; they do not seem to understand the importance of it. It’s beneath them. They are doctors, they are above all that. However it’s clearly worse than that in many situations, it’s more about their reputations, nothing about treating correctly or protecting patients. The NHS and it’s patients are clearly not safe in their hands and yet they rule.

snow22 profile image
snow22 in reply to arTistapple

even then they are warned lives are being put at risk and babies in the case of panorama investigation they don’t listen and ignore the dangers even when they are told! If they are this cavalier with babies lives as in the Bristol scandal too what chance do we have? The whistleblower in Bristol tried for two years to make them listen and he was a cardiologist like them. But many more babies had to die and then he was never offered a job again inU K so is in Australia. That is what we are up against!

arTistapple profile image
arTistapple in reply to snow22

Yes! I was amazed too at the ‘nerve’ of the consultant? who was sorting out the children who had been wrongly diagnosed. That takes steel. Good on her.

turquoisea7 profile image
turquoisea7

I don't know if this is of any help to you or not - tpauk.com/main/

LindaC profile image
LindaC in reply to turquoisea7

Thank you - knew Sheila quite well - great info and what a 'fighter' - is there anything specific about representation there? I've fished out a couple of routes... fingers crossed. xox

turquoisea7 profile image
turquoisea7 in reply to LindaC

honestly I don't know, maybe you have to get in touch? As I say I stumbled across it when I was looking for help. Wish you all the best and agree with the whole, it's a shambles, line, it truly is. What we really need is a living qualified doctor to advocate and/or a lawyer with a thyroid disease.

LindaC profile image
LindaC in reply to turquoisea7

Thank you - oh, couldn't agree more - love it with the proviso a 'well-treated lawyer with...'! xox

Regenallotment profile image
Regenallotment in reply to turquoisea7

I’ve used that site a lot, it’s so helpful. Do we need to ask our organisations to convene a thyroid charities/groups conference to bring all this together and sort strategies? I think we need to continue Sheila’s great work because from what I can tell (although we are all benefitting from changes to NICE guidelines) many of us still aren’t benefiting to the point of wellness. 🦋💚🦋

turquoisea7 profile image
turquoisea7 in reply to Regenallotment

The difficult is always bringing the issue to the attention of someone with the interest, clout and time to want to champion it all. I mean look at the huge effort the admins here take just answering us all. We need an Erin Brockovich (pref with hashis)! Probably not the right person, but I wonder about that hypermobile doctor, fog's-gotten her name, was it Jessica someone? Maybe her interest could be piqued. She has done a cross-study with hypermobility & fibromyalgia, as the (I think retired or died) thyroid dr's expert views on fibro were that some huge percentage of it is undiagnosed hypo, maybe there's an in - or maybe it's too many leaps away from hypermobility. I may not be making much sense, it's that time of day - was it Dr Lowe who said he had found that with Fibro? research needed.

LindaC profile image
LindaC in reply to turquoisea7

Oh, you're making lots of sense! Likely John Lowe - amazing man - totally disregarded out of hand by the UK 'authorities' when seeking to present his findings. Sadly, needs to be someone capable and willing - with NOTHING to lose - to take them on. One day...

Regenallotment profile image
Regenallotment

I finished that podcast today and at the end…. guess what….. they are starting Thyroid debacle training for practitioners and for ‘laymen’ (their words not mine). Here is the link, last 5 minutes podcasts.apple.com/gb/podca... the same pair have also been on the Aussie ‘let’s talk thyroid podcast too. I haven’t had time to look but they said the training info is on their website.

LindaC profile image
LindaC in reply to Regenallotment

Thank you so much for this! Good to know. Not before time but Great stuff!

Yes, couldn't agree more re need more done. Still time for patient representation.

arTistapple profile image
arTistapple in reply to Regenallotment

That was an excellent podcast. I was particularly interested in one of the last questions put to the woman who had been a doctor. Sorry can’t remember her name or quote the actual question but it was about medication and did she still take it. The answer was an unashamed “Yes”. I have to say I thought that was brilliant. Why? Because many of the books and other written material gives patients the idea that they will be able to ditch their meds and they will be ‘well’. They were brave enough to say that it’s likely that by the time of diagnosis, your thyroid is pretty well shot and there is no reviving it. So much guilt shed! Something I certainly don’t have to worry about having had it for at least 25 years (more likely longer). It might not be important to some but it’s a load off my mind. I don’t have to feel (as these books etc often make me feel) that it was something I had done to myself and that it was my fault I could not eat clean enough, exercise enough, ignore my mortgage, control my stress. Some things I could learn to enhance but not actually cure. Off course this scenario could for a younger person could preserve their thyroid - maybe.

LindaC profile image
LindaC in reply to arTistapple

I had EBV at 27/28 yrs old. Felt like 'G Measles', so I just stayed home - away from college - until it went. Dr Skinner saw this in the A4 sheet of Health History I gave to him and immediately asked why I'd thought 'measles', assuring me that this will most likely have been EBV. Hypothyroidism didn't begin until 2003... so stuff certainly does linger.

Yes, excellent podcast.

Regenallotment profile image
Regenallotment in reply to arTistapple

Totally agree, I was banging the steering wheel at that bit! Yes! there is no remission when your thyroid is destroyed.

helvella profile image
helvellaAdministrator in reply to Regenallotment

I so wish that they'd make podcasts that are easier to listen to!

Have just listened to the podcast and my ears feel assaulted!

First, I know it isn't easy to do a good podcast. I know that our verbal skills and fluency vary hugely. And I'm not claiming I'd achieve any better! But...

The speech is so full of "you know", "umm", "sure so". And the padding we are all prone to - "I would like to say that..." - when they have a microphone and are speaking! Obviously they want to say something - just get on and say whatever it is!

Sound quality far too echo-ey, boomy, with microphone clunks.

Most of the dialogue is spoken too fast.

Cut the unnecessary half of the words and you have plenty of time to say everything at a more gentle pace. (Some of this seems to be because they are either not fully prepared or are anxious. Anxiety also tends to raise the pitch.)

Adding music in background of speech is a trend that has got worse and worse.

Net result is that concentration wanders. The messages are missed.

(Note that I am happy to accept the variations of accents and pronunciations. I can put them down as just being quaint!)

I do agree that there are multiple causes/triggers of Hashimoto's. Some might be certain their illness was due to Epstein-Barr Virus. But in many ways that part of the cause is in the past and you can't do much about it. It is interesting and might well have implications for the future - such as what we do with people suffering EBV.

Regenallotment profile image
Regenallotment in reply to helvella

Podcasting is definitely variable in quality! Some of the Regen Agrictulture ones sound (because they probably are) like they are recorded in a busy farmhouse kitchen with the speaker sitting miles from the microphone. Its dire! Not a patch on Gardeners Corner with David Maxwell by Radio Ulster (which is my all time favourite podcast) 🦋💚🦋

klr31 profile image
klr31

I definitely agree.

LindaC profile image
LindaC in reply to klr31

If 'they' won't self-regulate [adequately], then knowing someone - independently OUTSIDE - could challenge them - could, ultimately, help everyone.

Regenallotment profile image
Regenallotment

I agree with this, being held to account, accountable for decisions made. (But would that create even greater caution amongst practitioners? Hopefully not). We know more now than ever before and the advances will continue. Out dated beliefs and complacency/arrogance are our enemy. LindaC I'm new to all this but happy to support with the limited time/energy I have available. Are you in contact with people at TUK? I don't know anyone. Seems to me we need to find out the status of others of like mind. Could be something already underway we could lend our energies to supporting. 🦋💚🦋

LindaC profile image
LindaC in reply to Regenallotment

That sounds excellent - as stated way above - so much of my life has been 'taken and wasted' that I fear I'm almost running out of it! ;-) Hopefully not! I would love someone to pick up the baton to see this move forward. Any/all doctors would surely? welcome such accountability? Yes, would be great to find out who's up to what and where. Please, if you find out anything 'on your travels', bring it back to us or let us know if you have plans... I'd love to yet I'm already up to my neck with this kind of garbage. Thanks for your consideration and kindness. Best to you! 🦋💚🦋

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