Nadine Dorries says women should stand up to do... - Thyroid UK

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Nadine Dorries says women should stand up to doctors

helvella profile image
helvellaAdministrator

Related to my post the other day:

‘It’s infuriating and shocking’: how medicine has failed women over time

healthunlocked.com/thyroidu...

Now we have a politician telling you what you must do.

Nadine Dorries says women should stand up to doctors

Health minister Nadine Dorries wants women to feel they can demand different treatment, if they are unhappy with how medical staff are looking after them.

Ms Dorries, who deals with patient safety, suicide prevention and mental health, said she was "very aware" women faced inequalities in healthcare.

She said unconscious biases against women had "always been an issue".

It comes as the government calls for public views to inform England's first women's health strategy.

Ms Dorries said: "I want women to be more confident and not to take no for an answer.

"And if you are still in pain and if you are not being taken seriously and if your GP is not referring you on for consultant treatment then ask for it - demand it - because it is your right to do so."

Rest of item accessible (at least within the UK) here:

bbc.co.uk/news/health-57416989

It is all very well talking the talk. But if a hypothyroid patient is told that the only treatment is levothyroxine and that the endocrinologists in the area refuse appointments for patients who are "just" hypothyroid, or that their TSH isn't high enough so go home, what are they supposed to do? Turn round and say "The Health Minister says it's OK"? If liothyronine and desiccated thyroid are off the menu, what are they supposed to do? Take on the clinical commissioning group (CCG), the RMOCs, the endocrinologists, the NHS people who agree crazy prices, the CMA who are supposed to be investigating?

All while ill, in pain, trying to manage all other aspects of life.

Remember, even this talk only applies to England.

Please note: This is not meant to be party political - I think the issue of politicians telling YOU what YOU must do to sort YOUR issue out without regard to reality is a problem across the spectrum.

Also, if anyone has any experiences from using the "Health Minister Nadine Dorries said ..." line, please let us all know. (Not a recommendation to try it!)

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148 Replies

Just listened to the fearless Emma Barnet interview Nadine Dorries on yesterday's Woman's Hour.Its available on BBC Sounds(radio catch up)which I listen to on my phone or laptop.Big feature on auto-immune.No mention of thyroid auto-immune except right at the end when listener messages are flooding in!

helvella profile image
helvellaAdministrator in reply to Naomi8

Thanks for that. This links to BBC Sounds (probably only accessible within the UK):

Women's Health Special - Nadine Dorries, Unwell Women, Mesh removal centres, Autoimmunity

Woman's Hour

Women's health has been neglected throughout history. Will a new Women's Health Strategy help turn things around?

bbc.co.uk/programmes/m000wsf4

Dorries said:

"over 100,000 responses from women across the UK"

The request for responses was only available to those in England. So why does she say "UK"?

"sexual and reproductive health isn't in my portfolio"

Emma Barnett says it is "Patient shaming".

tattybogle profile image
tattybogle in reply to Naomi8

No mention of thyroid auto-immune except right at the end when listener messages are flooding in!

Ah .. i was listening , but left in a Huff when they went back to the 'mesh ' interview without even mentioning Thyroid in the Autoimmune interview.

Glad it got a mention at the end, but was still quite astonished that the Autoimmune research was not looking at what is presumably ? the most common autoimmune disease.

TSH110 profile image
TSH110 in reply to tattybogle

tattybogle send them a rocket! I have done we need to text bomb them given all the rubbish we have had to take over the years and nothing has really got better - no choice of medication, dosing by TSH ONLY , supposedly overt levels in order to get any treatment are an upwardly moving high jump set at a ridiculous height, the i

Sea tgat o

Me wonen don’t need treatment is gaining traction., insistence that persistent symptoms are in our minds and need antidepressants - it’s unbelievable we are getting such a lousy service in this day and age. We need yell about it from the hill tops to any channel that might actually listen. I bet she’s got hypothyroidism having that endometriosis and I’ve told her so.

crabapple profile image
crabapple in reply to tattybogle

Link to tweet from Lucy Walker about talking about autoimmunity on Woman's Hour. She gives a shout out to Versus Arthritis, MS Society, Alopecia UK and JDRF UK [Type one diabetes] which are the only autoimmune diseases raised in the interview. My question when I listened yesterday was why just those? It looks like the BBC followed her lead on this.

edited to include link - silly me.

twitter.com/LucyWalkerlab/s...

tattybogle profile image
tattybogle in reply to crabapple

Yes i was curious why the research UCL /Royal Free ? team are running on connections in autoimmunity chose not include Autoimmune Thyroid Disease in the collection they are looking at .....maybe we're too complicated.. or controversial... or maybe the Endocrinologists told them it's just a simple little problem solved by taking a cheap pill. I swear some people don't even realise most Hypothyroidism IS an Autoimmune ..they just think it goes 'underactive all by itself cos it got lazy'

helvella profile image
helvellaAdministrator in reply to tattybogle

Anyone on Twitter - can you ask Lucy Walker why that is the case?

crabapple profile image
crabapple in reply to helvella

I would have expected the reporter to have done that. Can you confirm how many of the 4 million are thyroid cases - is it 2 million as Rita-D stestes. I would like to include it in my e-mail to the BBC.

helvella profile image
helvellaAdministrator in reply to crabapple

Not to hand - well over ten years ago, many surgeries in England showed about 2.1% of patients (possibly just adult - not sure) were hypothyroid/prescribed levothyroxine. But that did rise over the years. So around two million seems feasible.

I'll try to remember to check later.

crabapple profile image
crabapple in reply to helvella

Thank you.

tattybogle profile image
tattybogle in reply to crabapple

I put '2 Million' in mine . based solely on Slowdragons response to me here healthunlocked.com/thyroidu... she didn't give a reference ., but i decided she's not one to write rubbish without having some basis to back it.

crabapple profile image
crabapple in reply to tattybogle

I'll go with that then.

crabapple profile image
crabapple in reply to tattybogle

Maybe there are just too many of us to study...

Naomi8 profile image
Naomi8 in reply to tattybogle

me ditto

282523 profile image
282523 in reply to tattybogle

Rare is so so hard though. Please don’t sulk or begrudge that we finally get a mention. We shouldn’t always focus on common stuff or we will continue to have a society that only looks out for its majorities.

Instead try being glad thatWoman’s Hour has focussed for once on the rarest autoimmune diseases - since many of us with these will have autoimmune thyroid diseases as well.

I hope you never have to but try living with some of the rarest as well the commonest AI disease and then see if you still want to switch off in a huff.

We comprise the tiniest and sickest diasporas - we need the publicity far more because we are too few to take to the streets, nor do we have large charities representing our interests, nor time, nor energy to learn the science behind just one overlapping autoimmune disease of many.

Common is common - but rare needs the flag waving more because we have no one researching our diseases nor any treatments on or off the NHS.

Here take a look - it’s world scleroderma day soon. So try looking at this heterogeneous condition and think hard about how lonely these rare autoimmune diseases are to live with compared to yours.

You who are huge in number and have only one common autoimmune disease to deal with and who have time to focus only on this - please use your power as a very large group to lobby for awareness for ALL with autoimmune immune diseases including the rarest and most disabling and incurable - because you and Thyroid UK can.

sruk.co.uk/get-involved/awa...

Rita-D profile image
Rita-D in reply to Naomi8

I heard this too. I was astonished that no mention of thyroid issues given that out of 4 million people with auto immune conditions, 2 million have thyroid disease, (and we all know that 80% of those people will be women), that there was no mention of it until the very end as an after thought!

It’s shocking that she is calling on women to stand up for ourselves. What the heck does she think we’ve been doing for years? Onus yet again on the patient instead of on the medical profession to listen carefully and to be skilled enough to treat us effectively.

helvella profile image
helvellaAdministrator in reply to Rita-D

BBC Women's Hour does invite contacts from listeners. Details available here:

bbc.co.uk/programmes/articl...

If even the currently active members here ALL contacted them, it would have an impact of some sort.

TSH110 profile image
TSH110 in reply to helvella

I quite agree helvella - we need to pipe up about it en máss

tattybogle profile image
tattybogle in reply to helvella

Am considering hitting 'Send' on this ..

To:- womanshour.yourviews@bbc.co.uk

Subject :- * Edited out.. it was good but you missed it *

Yours sincerely.. "

Will this do ?

Excellent, Tatty xx

Zazbag profile image
Zazbag in reply to tattybogle

Pllllleeeeaase send it

tattybogle profile image
tattybogle in reply to Zazbag

Ok .... i'm hitting 'send' now .. (before the cat jumps on the keyboard and i loose it)

Zazbag profile image
Zazbag in reply to tattybogle

Thanks so much for taking the time to write it 😊

TSH110 profile image
TSH110 in reply to Rita-D

tell them and moan like hell about it. I have whilst up a ladder pruning a Tinus viburnum! I thought I was rubbish at multitasking too 🤣🤣🤣

TSH110 profile image
TSH110 in reply to Naomi8

I sent them a bombshell about that you should do too - we need to flood them with complaints - it’s the most common autoimmune a disorder but was given mere lip service. I’d say woman’s hour is also not listening to women if they can simply ignore thyroid disorder like that. I bet her endometriosis is a symptom of underlying thyroid disorder too. I sent her a scholarly article linking them and told her to get a full thyroid panel if she can but that the NHS rarely, if ever do them.

KnittyGritty profile image
KnittyGritty in reply to TSH110

Apologies for the off topic butting in, but I didn't know endo and thyroid were linked? As someone with both, is there anywhere youd suggest for reading about this as would love to learn more.

TSH110 profile image
TSH110 in reply to KnittyGritty

This was the paper I sent to Woman’s hour that links the two:

pnas.org/content/116/24/11894

This paper only finds a link with hyperthyroidism not hypothyroidism

ncbi.nlm.nih.gov/pmc/articl...

KnittyGritty profile image
KnittyGritty in reply to TSH110

Thank you! Very interesting, though a bit beyond me on the technical front... It's good to see research happening on this :)

TSH110 profile image
TSH110 in reply to KnittyGritty

There’s a lot out there claiming there is no link, but I don’t believe it. They seem to be these meta studies of meta studies, nothing from primary source research.

Nadine Dorries is, according to Wiki, Minister for Mental Health, Suicide Prevention and Patient Safety since 2019 and MP for Mid Bedfordshire.

We must surely have members here within her constituency???

Seems to me that we (as a forum) can legitimately email her (easily done - dorriesn@parliament.uk) whenever

(a) we are in her constituency and get fobbed off or

(b) we are told our rubbish thyroid results are due to "anxiety" or "depression" - as that's within her mental health remit. Or indeed if we feel "patient safety" is being compromised [perhaps cc your own MP at the same time]

I'm not saying she will actually DO anything, but she might feel better informed about the issues so many of us put up with if there's a deluge of emails! People without thyroid issues are blissfully ignorant of the reality of patient care and as a relevant MP it's arguably OUR job to help her understand

helvella profile image
helvellaAdministrator in reply to fuchsia-pink

Despite her claiming to understand, I got precious little feeling that she really does.

So a bit of education education education is in order? :)

LindaC profile image
LindaC in reply to helvella

Seems understanding and feeling... are lacking!

TSH110 profile image
TSH110 in reply to fuchsia-pink

You’re optimistic!

She said unconscious biases against women had "always been an issue".

In my experience the biases are not unconscious. I think they are entirely front and centre and are intended exactly as they appear. Doctors really do think that women are hysterical, anxious, depressed, unable to understand their own bodies, imagine their own symptoms, are intolerant of pain and need to "man up", are mentally ill, are illogical, and everything they say for themselves has to be minimised and dismissed.

The big problem of course is that gynae symptoms and thyroid symptoms (and MS symptoms, and lupus symptoms, and most cancer symptoms and so on and so on) are largely invisible, so we are on shaky ground in terms of proof of anything. And of course, doctors write patients' medical records, so they can minimise, omit, and lie in those as much as they like.

I read one recent anecdote (can't remember where) about a doctor who was so incensed that patients could read his notes about a consultation (and he thought they were none of the patients' business) that all he wrote in all of them was "had a chat with patient".

helvella profile image
helvellaAdministrator in reply to humanbean

I do wish that patients could write up their own account and have them recorded alongside the doctors' accounts in their records.

Even if the patients' versions were somehow hidden from most viewers, it would allow the patient to compare and contrast the two versions of appointments.

Even better if there were a significantly scaled research project to see how opinions differed. And then actually investigate how they came about and what could be done to avoid future issues. It could help to identify why there is such a lot of miscommunication.

On the television programs where patients see their GPs, we quite often can see what is going wrong. (And these, I suspect, are among the more open doctors who allowed the filming in the first place.)

TVOReason profile image
TVOReason in reply to helvella

Last week I received an overview of a consultation I had with a breast specialist I was furious to read ‘ has a history of depressive illness and chronic kidney disease’ , at first I thought they written to the wrong patient on taking it up with the specialist he told me this had come from my own GP’s from 2006 and 2019 respectively. I have asked the practice to get back to me as to where this has all come from.., surprise... they haven’t as yet. I am going to make a subject access request and find out just exactly what’s on my record. I was a data protection specialist in my career and I know the law on access to records.....

TSH110 profile image
TSH110 in reply to TVOReason

Good for you - it’s outrageous

I wrote to my GP after my endo finally gave me lio - a starter dose of 2 x 20 mcg! - and the follow-up appointment, at less than 30 seconds during which the dose was halved and I was kicked out, indicated that this had been a mistake. Hopefully it's with my records. I noted that I had felt obliged to resort to Dr Google to see if the over-dosing was likely to have caused me any health problems ... [it has, in fact, resulted in permanent vitiligo - white patches on my face and fingers, which are noticeable in summer when the rest of me gets tanned - but happily nothing worse]

JGBH profile image
JGBH in reply to humanbean

Indeed! When I first requested copies of my blood tests and of letters from gp to consultant and viz versa and access to my medical notes, my gp said these belong to the NHS! To which I replied yes but they mostly belong to the patients according to the law. Without patients there wouldn’t be an NHS... It’s incredible how superior they feel. When I got my notes many pages appear to have been removed....many notes out of order and missing.... They don’t like to be found out for the useless arrogant people that they are. I have always had to push for everything, so nothing new to me. It’s simply shocking and not acceptable. This applies equally to female gps, not just males.

tattybogle profile image
tattybogle in reply to humanbean

all he wrote in all of them was "had a chat with patient".

Now you mention it that little phase appears VERY often on my notes from appointments with one particular GP.... i had thought 'how friendly'.... not so sure now.

But to be fair he was OK and checked my ankle reflex return speed and when he didn't like what he saw, he ordered TPOab which led to diagnosis/treatment, so with hindsight he was one of the better ones.

JGBH profile image
JGBH in reply to tattybogle

Although the NHS is a wonderful institution in many ways it also forms part of the problem: anyone working under the umbrella of the NHS is totally protected, in that they are safe in getting a regular salary (much too much for GPs, not enough for junior doctors though), a great pension WHETHER they are doing a good job or not! That’s the big issue. They should be rewarded accordingly to they records of applying good medical practice. Not the case. Must say I have come across a few excellent consultants, just a few mind. As for GPs... no just luck.

TSH110 profile image
TSH110 in reply to tattybogle

Do you think HACWP is an acronym for something not quite so innocuous as a chat?

tattybogle profile image
tattybogle in reply to TSH110

i usually talk too much, so i had thought it meant 'patient waffled on for so long, i now have no idea what to write in this little box'

Have also wondered what 'this pleasant lady' and 'this very pleasant lady' mean in 'consultant letter speak' .... me and scrumbler had a bet on, to see who could get described as 'delightful' first .. I have long suspected 'pleasant' to be code for 'nuisance', so on that basis 'delightful ' would mean 'bloody nuisance'.... and i have standards to keep up , as i come from a long line of nuisances :)

TSH110 profile image
TSH110 in reply to tattybogle

I don’t know - I just assumed it was some quaint old protocol they use - I must be a menace then!!

I've been standing up to doctors since I was not much more than a child, but it's never got me very far!

Besides having the force of character, etc., to stand up to them, you also have to know a bit about what you're saying. Just saying 'I'm sure there has to be another treatment for this...' sounds, and is, a bit lame and really won't get you very far! Doctors lie with impunity, and if you don't know much about it either, what are you supposed to say? All those years I was hypo and being fobbed off, I didn't even know what a thyroid was, so I could hardly ask for it to be tested! Maybe a bit of medical training in schools is the answer. I think that would scare the life out of most doctors, and put them on their guard! lol

helvella profile image
helvellaAdministrator in reply to greygoose

Now you can add "Nadine Dorries said ..." :-)

(Not that anyone in France would know or care who she is.)

Each time patients are told to stand up (or whatever) it effectively blames patients who cannot do so - through illness, through ignorance, through poor communication skills, etc.

And these issues apply to all of us at one time or another. I mean, seeing a doctor who speaks another language is a challenge.

greygoose profile image
greygoose in reply to helvella

Or trying to communicate with a doctor who doesn't speak your language very well. Or with a doctor that mumbles into his keyboard when you are getting increasingly hard of hearing. I've noticed that when I tell doctors I'm deaf, could they speak up a bit, please, they tend to speak even more quietly. Is that some sort of test, or what?

There are so many factors that form a barrier between us and our doctors, and they don't seem to do anything to try and over-come them. They hide behind these barriers because it makes life so much easier for them! And I've found this to be true both in France and the UK.

JGBH profile image
JGBH in reply to helvella

Well said. I have never had problems in expressing myself in English although I am French but I accept it is not always easy for other people to do so and most stressful. I always do my research and walk in with a notebook full of questions, suggestions etc. And I make notes of what the doctors/ consultants say... keep them on their toes!

TSH110 profile image
TSH110 in reply to JGBH

I like that taking down notesof what they say I bet that puts the wind up them 🤣🤣🤣

JGBH profile image
JGBH in reply to TSH110

I don’t do this to be antagonistic but I have had more than enough of their utter incompetence! At least they can see I am honest and that I intend to get results (but not always unfortunately)... My questions are written down and I write their answers..Out of despair I took a friend with me, on a few occasions, as a witness. I can assure you it makes a difference! I also write letters, explaining my problems, add copies of research... that’s how I eventually was prescribed B12 injections... I had quite a fight on my hands. The B12 made such a difference. They’re not prepared to help patients getting better, especially if over 65 and having complex health issues. Of course I always aim at being polite and courteous.

TSH110 profile image
TSH110 in reply to JGBH

Sorry I didn’t mean to poke fun or anything. I am impressed with your approach, which is very pragmatic. I shudder to think of how I will fare at 65 and beyond when the latest fashion seems to be removing any thyroid replacement hormone treatment for older women with the lie that we don’t really need it. It is frightening.

JGBH profile image
JGBH in reply to TSH110

It’s not just hypothyroidism that is neglected, there’s much more than that. Anyway, this is the end of the conversation for me because we can talk till we’re blue in the face and nothing is really changing. We need to only talk the talk but most important we must walk the walk... demanding to be listened to and helped. Take care.

TSH110 profile image
TSH110 in reply to helvella

Especially Icelandic ones in my experience….sorry I still have a real downer on that fool I saw! I hope it was a one off.

LindaC profile image
LindaC in reply to greygoose

Me also - from 6 y/o, having the regular bout of tonsilitis, a different GP to my lovely one, kept lifting my clothes up to examine my chest... (even sounding chest, was accessible without lifting all clothing up!) and I kept pulling the top down and insisting "It's my throat"... Clearly, with the fiestiest G'mother [not mother] that was sufficient to set me off on my path - already doing it with parents - to stand my ground.

Sadly, with doctors and the like... one way or another, they make you pay [or think they have!]. Ah well, please people - do challenge them!

Women laughing ;-)
greygoose profile image
greygoose in reply to LindaC

Were those women laughing at the foot of the Guillotine? Looks rather like it. :)

Yes, I have a story rather like yours, but I cannot bear to tell it, even all these years later...

LindaC profile image
LindaC in reply to greygoose

Rich history... Tricoteuse - yes, galling today! 🦋

TSH110 profile image
TSH110 in reply to LindaC

What a perv - poor you. I had one who seemed to be jacking off as he spoke to me - it was disgusting I never went back to him.

LindaC profile image
LindaC in reply to TSH110

Sorry to hear that - sadly it seems quite commonplace. I never really thought of it that way at 6 y/o, just needing to assert myself when someone was lifting up clothes... double message being given to children, eh? Err, like my mother telling me to "Do what the doctor tells you...". No!

I had two amazing G'mothers, one of the sweetest, died days before I was 5 :-( , the other 'took no sh*t from anyone' - certainly 'no man' 😅 so I've never had an issue around them. Fortunately, pre-birth to 18 y/o GP was the loveliest man... so there was no angst in that respect re doctors, just that one creep, who I'm pretty sure was up to nothing other than 'power and control'.

A couple of adult incidents, yet this seems not uncommon for women. One, in my early 20's... I still can't believe the audactity of him! An 'internal' for a sore throat... when pulling my winter tights up, he asked me to leave them at my knees, for him to feel each 'notch of my spine'; even I was so stunned at that one, I just left the office!! The second mid-30's was a private dermatologist consult, GP waste of time... so, stress spots - seemingly becoming 'infected', something I'd never had before - ONLY at back of my neck, He asked me to remove my bra... without thinking I did, only to have him gently 'flick a breast'! Unbelievable... invoice arrived and I just refused to pay - saying, "I'm certainly not that way inclined, yet still of an age and firmness that I could be charging you, so I'm def. not paying you for that"! Tee hee, that was it [or have I missed off a t!]. Couple of 'debt collectors letters'... I wrote back and said why. 😂 The older I get, the more total appreciation I have for my G'mothers, of another era! 💚❤️💛

TSH110 profile image
TSH110 in reply to greygoose

Ah but you have my respect! I suppose if they have never really been trained in thyroid disorder it might be a mystery to them as well, but I told them repeatedly that there were thyroid problems in my family and were my problems anything to do with my thyroid. Absolutely not it was the menopause - no blood tests no exam nothing…. so I accepted it and concluded I was a hypochondriac, until the menopause came and went but my problems did not go away, they got a lot worse. One day I just went to the doctors and decided I was not leaving until he took my blood for a thyroid panel it was sheer desperation by that juncture.

Absolutely brilliant response helvella. In a nutshell, it also tells us who to complain to, for what. Please write this comment against the BBC article on the website.

Someone mentioned they were listening to the interview on the radio and the interviewer was raising similar points to those you've said above. Maybe we can listen to it on catch up?

helvella profile image
helvellaAdministrator in reply to BB001

Yes - that is how I listened - the link is:

bbc.co.uk/programmes/m000wsf4

Well, of course it helps. But, if you're suffering from something you know nothing about, how are you supposed to diagnose yourself! As I said, for years and years - from the age of about 8 - I suffered hypo symptoms, but had no idea what a thyroid was. No internet in those days, to google symptoms. And, even these days, not everybody has a computer, so how are they supposed to diagnose themselves? It's not reasonable to think that everyone can.

JGBH profile image
JGBH in reply to greygoose

If one chooses to study Biology at GCSE level then one gets a basic grasp of what various parts of the body are... makes it a little easier. However more research needs to be done and some people don’t have access to a computer, so difficult indeed. It should not be such a challenge and battle!

greygoose profile image
greygoose in reply to JGBH

Also, not everybody choses to study biology...

No, it should not be such a battle! Doctors should do what they're paid for: make patients well.

JGBH profile image
JGBH in reply to greygoose

Agree doctors should do the job they are very well paid for, especially here in the UK, but they “appear “ reluctant to help.... Many can’t be bothered in the knowledge they will still get paid and get a great pension! Also they get bonuses for their surgeries when prescribing specific drugs.... regardless of the good/harm they may do to patients. They’re not doctors really.... just have the title.... status and pay. Agree that not everyone chooses biology at school but it should be part of the curriculum because at least most people would then have a basic idea about their bodies’ function. It would empower them to deal with doctors. That would be a start. Knowledge = Power.

greygoose profile image
greygoose in reply to JGBH

I did biology at school. And I remember my mother asking how I could bear to do it! I replied, how can you live without knowing what goes on inside you? She said: I have absolutely no desire to know (she could be a bit Queen Victoria at times! lol). But, then, she never went to the doctors, either. She hated them, too.

Unfortunately, I really don't recall any mention of the endocrine system during our biology lessons, so they didn't help me much, either.

TSH110 profile image
TSH110 in reply to greygoose

I think it was regarded as a bit of a mystery - too complex to fathom and hard to draw not like a kidney or a heart! I used to love biology especially the diagrams, many of which remain clear in my mind to this day. I always think what we don’t know is huge compared to what we do and that applies to every person in this planet

TSH110 profile image
TSH110 in reply to greygoose

It’s so simple once you cut through all the 💩

I have no sense of humour.

helvella profile image
helvellaAdministrator in reply to greygoose

Which has been reported as a symptom of hypothyroidism.

(Though have not seen mention of it in a long time.)

greygoose profile image
greygoose in reply to helvella

Oh, really? I didn't know that. I must be very hypo at the moment then.

Another thing I've noticed from talking to people, is that being hypo affects your appreciation of music. Not in everyone, of course, but a lot of people who loved music before they became hypo, can no-longer bear it afterwards. It's certainly happened to me. I want to scream when someone turns on the car radio - which all my family do!

Hillwoman profile image
Hillwoman in reply to greygoose

Wow! I had no idea. Explains a lot ...

greygoose profile image
greygoose in reply to Hillwoman

Indeed!

TSH110 profile image
TSH110 in reply to greygoose

I used to listen to music all the time but rarely do now.I still enjoy it but I don’t seek it out much. I did go to the odd. concert pre covid always minimalist stuff - perhaps it’s easier to process?

TSH110 profile image
TSH110 in reply to helvella

It most certainly is. I began to take things very literally as nd found no humour in anything. I suppose it needs a lot of mental coordination to find things amusing, just getting from moment to moment took all my energy. I am still not quick witted like I once was can take a mo fue the penny to drop. But my sense of humour gradually reappeared, if a tad scathed.

Yes, I knew that. And, something that no-one else seems to know, but I'm pretty certain it's true: poor spelling - which is closely related to dyslexia. I've never been able to learn to spell - although it's better now I'm bilingual, funnily enough. I thank god for spell-check! (Although that doesn't work on here.)

TSH110 profile image
TSH110 in reply to greygoose

Deffo poor handwriting - that one is accepted. Mine became atrocious - I could give a doctor a good run for their money! I once had a very attractive and clear hand it’s never fully recovered it’s an effort to write neatly like I once did automatically. Perhaps it explains my poor spelling too.

Why did you change this? Before, you mentioned dyslexia.

It's both. Also paranoia, claustrophobia, agoraphobia, depression, anxiety, etc. etc. etc. Just about anything to do with the brain.

TSH110 profile image
TSH110 in reply to greygoose

Oh boy all my worse ones there, NDT banished the depression but not the others.

Gaslighting at its finest. It’s our fault for ‘taking no for an answer’.

JGBH profile image
JGBH in reply to NWA6

Absolutely! Should never take no for an answer and should always challenge them. Of course it would be better if challenging them wasn’t necessary... Never be intimidated by a doctor...

Thank you, I listened to radio 4 programme, it was great. Dorries’s response is a copt out... She’s didn’t suggest anything we didn’t already know and experience and certainly no real support or tip in improving the situation!

That's not specifically to do with the brain, but yes, it can cause neuropathy. In fact, just about everything and anything can be a hypo symptom. Just a pity doctors know nothing about symptoms!

😅☘️😎☘️😅 Yes, AND! Then you have the lot of them 'coming after you'

How about those with sufficient expertise and ability to be consise - put together < an A4 sheet of agreed KEY pointers on TSH, T4 + T3... so that anyone can print this off and take it to their GP, to point to when the inevitable 👺💩 comes their way?

Women in 21st C
helvella profile image
helvellaAdministrator in reply to LindaC

I am not sure what you are expecting to see on the A4 sheet!

It would probably have to include magic spells to get a GP to accept and act.

LindaC profile image
LindaC in reply to helvella

There are key aspects that GPs AND Endos simply deny - bare-faced as they are - so a few, pretty indisputable 'facts' may well be of help to someone not up to taking them on.

Also, leave the sheet with them, have it added to your Medical R, to reference at another time.

Of course, accepted magic spells or even mushrooms ;-) BUT rolling over is not the answer in this 21st C - they simply must be challenged, one way or another!? 👽👀💪

helvella profile image
helvellaAdministrator in reply to LindaC

This flowchart has always seemed quite useful - despite it imperfections.

Flowchart of strange test results
LindaC profile image
LindaC in reply to helvella

That is good... wondering whether they'd grasp it ;-) Thank you for this.

helvella profile image
helvellaAdministrator in reply to LindaC

It is from Thyroid Disease Manager - linked (along with many other sources) here:

helvella - Other Sources of Information

Lists various sources of information available around the internet. This is primarily from a UK perspective though several non-UK sites have been included.

dropbox.com/s/cmwjpd6dobgnq...

LindaC profile image
LindaC in reply to helvella

Thank you again, helvella. Yes, post 2015 the UK seems to have become all the more precious and territorial. Fancy that!

greygoose profile image
greygoose in reply to LindaC

But, then, doctors would want to know where you got your information, and completely dismiss it when you say you got it on internet! One doctor told me I 'shouldn't believe everything I read on internet'. I replied that as I didn't have multiple personality disorder, that would be a physical impossibility. He just looked perplexed.

LindaC profile image
LindaC in reply to greygoose

So, once more, nothing gets done - that is what has brought us to this point. Those frequently shouting about 'saving the NHS'... (sure, the emergency + some excellent disciplines) often have no clue as to what goes on where there are chronic health issues... until it happens to them, then it's too late.

greygoose profile image
greygoose in reply to LindaC

Oh, they have no idea at all. But, it's not just the NHS. It's pretty much the same here in France.

LindaC profile image
LindaC in reply to greygoose

People sit back at their own peril when PUBLIC FUNDING is being misused for some of them to be 'laughing all the way to the bank'! I get the hypothyroid/adrenal issues not being listened to but once things go beyond that... I'm more than shocked at medics - didn't think it was possible for me to be stunned any longer.

Yppah profile image
Yppah in reply to LindaC

That’s a big part of the problem - we can’t even talk sensibly about the state of the NHS without people getting all defensive and NHS-loving at all costs. Exactly as you say, there are some brilliant things. But loads of totally rubbish things, and it’s OK for medical professionals to not be up-to-speed, and utterly dismissive. If I didn’t keep on top of emerging practice and research in my job I could get sacked. If I didn’t treat a customer fairly I could get sacked. 🤷🏻‍♀️

LindaC profile image
LindaC in reply to Yppah

Exactly, yet the only safety net that many of us are seeing is the huge [weighted] blanket thrown over them... the balance has to change. So many people are being short changed, not only with rubbish health care but we're being sneered at to boot.

JGBH profile image
JGBH in reply to greygoose

To say “from internet “ opens the door to their “superior “ knowledge and gives them free range in ridiculing you. I also quote my source. I mentioned earlier on, I take notes with me.... You should see the gp’s face when I retrieve my notebook from my bag!! Then she can’t deny my research is click bait and nonsense!

greygoose profile image
greygoose in reply to JGBH

Oh, yes, you're quite right, you do need the sources. But, LindaC was suggesting, some sort of crib, I think, and I don't know if she meant it to include sources, or just the general stuff we talk about on here.

LindaC profile image
LindaC in reply to greygoose

I was kind of hinting at - something pulled together from diog, helv et al, where their over-reliance on ranges, on stupid TSH assertions, the supposed huge 'value' of T4 treatment and the awful 'dangers' of T3 and NDT are quashed + INDIVIDUAL differences are highlighted so that statements are almost indisputable. Tough one!? I don't think so.

Yppah profile image
Yppah in reply to greygoose

I mean we should definitely never call it “An Idiot’s Guide To Thyroid”...

greygoose profile image
greygoose in reply to Yppah

I wouldn't suggest we did!

TSH110 profile image
TSH110 in reply to Yppah

They’ve got that already isn’t it called NICE?

LindaC profile image
LindaC in reply to JGBH

Absolutely - I do the references, quotes... that is then turned into... 'xyz behavior' - you name it, they'll disregard. Need help, many of them. 😅👀 They don't get to ridicule me BUT it winds up as a 'stand off', then they loathe you, gossip about you and...

JGBH profile image
JGBH in reply to LindaC

I have past caring when they “gossip about me, loathe me” etc. as long as I eventually get what is required eventually.... not winning every time. I know my name is written in red somewhere! Plus being French I have to be labelled as a “pushy foreigner “... no doubt. But as I have already said, I don’t care. I will carry on pushing... exhausting as it is.

LindaC profile image
LindaC in reply to JGBH

That's great news to hear! Me also - and that goes for anyone behaving in this way towards me - but it's THAT they do it... highlightiing [or gaslighting] just how small-minded and 'unprofessional' these people can be.

As for pushing... indeed, simply can't be permitted to get away with it. 🦋🎶💚💛

JGBH profile image
JGBH in reply to LindaC

Agree, they certainly don’t behave in a professional manner, far from it. It’s high time they were brought down from the pedestal they believe they should be held on. It would be a joke if so many patients’s wellbeing and lives didn’t depend on them.

LindaC profile image
LindaC in reply to JGBH

Totally! Something really needs to change - lives are on the line - many seem not to give a damn... in some surreal way! Worst of all, other 'professionals' LISTEN to their colleagues... bad attitudes get passed on - so not worried about 'what they say', more how people can end up being viewed by others.

JGBH profile image
JGBH in reply to LindaC

This change won’t happen UNTIL all patients stand up to doctors and request to be given the correct investigations and treatments.... Don’t think it will happen soon... too many people behave like sheep... say nothing to their doctors but moan afterwards, which is useless. Only by becoming proactive will change occurs slowly... so...

helvella profile image
helvellaAdministrator in reply to JGBH

Sorry, but that appears to blame the patients.

Patients shouldn't NEED to stand up and request whatever investigations and treatments.

And not all patients CAN stand up, etc.

JGBH profile image
JGBH in reply to helvella

I totally agree that patients should not have to stand up etc. BUT nothing or very little happens if we’re not prepared to fight our ground. Because many doctors don’t do their jobs as they should and as expected, people don’t get what they need. So, please tell me how do we get this situation to change? I totally understand it is not easy for everyone to make themselves heard by doctors but surely it’s worth changing one’s habit, even if one feels out of one’s comfort zone, in order to get the necessary investigations and treatments ? Unfortunately I don’t see how we can change this shameful situation.

TSH110 profile image
TSH110 in reply to JGBH

It’s very hard to fight against the status quo and the establishment - I don’t have any answers bar the science eventually putting a new perspective on it all and causing a sea change in those delivering medicine. I don’t expect to see it in my lifetime and I might make another 30 years. In the meantime I will not be silenced.

JGBH profile image
JGBH in reply to TSH110

Yes very hard to fight against the establishment but people need to show they won’t accept being fobbed off and their health neglected by incompetent doctors. I won’t see a chance if it happens, at 75... But I hope it will change (a dream). Good on you for refusing to be silenced. The more people doing this the greater the chance of succeeding in being treated as we should as patients and doctors doing their jobs properly.

LindaC profile image
LindaC in reply to helvella

So much patient blaming goes on at the hand of doctors, I'm not sure JGBH - given everything else said - is going down that line, but caution is prudent. Yes, whilst having somewhere to 'tell our own tale(s)' is great - and thank all of you here - unless WE THE PATIENTS do stand up, nothing will ever change. Things have gone way too far.

NO, no one should have to stand up and request investigations and treatments - BUT THEY DO and amidst sneering etc. It is horrific 'What's Going On' out there and I'm surely not alone in these thoughts.

Of course not all patients CAN stand up... and where 'Advocacy' roles are ultimately tied to funding, where 'charitable recipients' can't really step TOO far out of line... (I've worked in that role and did not shirk... 'they' always get you in the end 😅 - not paranoid, either 💚 - just been around that block too many times!)

JGBH profile image
JGBH in reply to LindaC

Yes, Linda, you have explained the impossible situation very well. True there is much sneering and belittling even when the patient who stood up to them gets the investigation and treatment required. And, NO, you’re not on your own thinking the way you do... How else SO MANY people complain about such a situation? As long as people accept this incompetent, arrogant and neglectful behaviour from medics nothing will change, and why should it if only a minority of people stand up to them, labelled “awkward patients”? It’s most important people realise they have a duty to at least themselves if not to others to fight for what their health, wellbeing need because doctors aren’t going to change just like that. They assume they’re doing a great job if people just accept their horrific neglect... but I think deeply they know they’re not doing what they should but are left to get away with it. I despair it will ever change. Had the Suffragettes not got out of their comfort zones (and took so many risks) women would probably not be allowed to vote still! What a thought... Changes just don’t happen by simple chance, they have to be made to happen, be it social, political, educational or medical...

LindaC profile image
LindaC in reply to JGBH

Yes, I say this too - albeit many people have no idea what happens BECAUSE they don't have chronic illness(es), but those who do, could help everyone if people stood up to them. Some people 'culturally' [cap-doff] and just don't feel able or think it inappopriate to challenge those in authority.

Education system is unlikely to encourage independence/autonomy... is it!? 😂

JGBH profile image
JGBH in reply to LindaC

Again you have many good points. I totally agree with this cultural cap-doff situation.... it’s so so out of date yet still so present. It is not only important but also healthy to encourage changes in an evolving society. True that unless people experience debilitating health issues they do not have a clue although they believe they do. That’s a fairly normal reaction I suppose.

LindaC profile image
LindaC in reply to JGBH

Seems some have been lulled into a false 'sense' ;-) of something... unbelievable that people appear not to be sufficiently concerned. Tragic, really.

JGBH profile image
JGBH in reply to LindaC

So true. It’s a kind of defeated apathy which I find rather difficult to understand.

LindaC profile image
LindaC in reply to JGBH

Me also, it's not only about the individual.

TSH110 profile image
TSH110 in reply to JGBH

But it is the doctors that need to reflect and change to meet their patients needs that’s what they signed up for….or was it just the £100k a year salary and the status…

JGBH profile image
JGBH in reply to TSH110

In a perfect world that should be the case. However, let’s not delude ourselves.... The doctors are paid way too much for what they actually do. The NHS hand them a great salary on a silver tray, whether they are good or useless! If they were paid according to their ability many would fare badly.Of course they want to be doctors for the money and the status, and don’t they abuse the status! Yes, there are a few exceptions... rare.

TSH110 profile image
TSH110 in reply to JGBH

Well they are stupid. The internet for all it’s faults, which are manifold, also has some excellent information. Lots of books and papers are full of rubbish, it is up to us to filter it down to the quality stuff, that’s part of being human and making informed decisions - we’re doing it every second of our lives. I’m not stupid and have had curt words for any supercilious medic that tries to get one like that over on me. It’s so disrespectful and an abuse of power. They are pathetic.

JGBH profile image
JGBH in reply to TSH110

I agree. Always look for great scientific papers, as you know.

TSH110 profile image
TSH110 in reply to greygoose

🤣🤣🤣

Hi Helvella ... well said. I trust you've echoed this in the DoH Womens Health Strategy survey!

I urge as many women thyroid patients to try and complete the survey with their stories. A nod was given to women's thyroid health in the closing moments of Radio4's Woman's Hour the other day following their report on The Women's Health Strategy Survey. I mean, it literally was a nod ... but at least women's thyroid health was publicly acknowledged.

Thank you, Helvella. Thank you forum. We owe it to ourselves and loved ones to be heard.

humanbean profile image
humanbean in reply to sy28

I just wanted to point out that Helvella is a male thyroid patient. :)

sy28 profile image
sy28 in reply to humanbean

Brilliant observation!

helvella profile image
helvellaAdministrator in reply to sy28

Just to note that the survey is by England's Department of Health and Social Care.

And it is only open to those in England. Regardless that quite a number in the three other nations have a vested interest in the English NHS whether from past experience, present connections or in the future. And, of course, vice versa.

Me too except I've hit a brick wall lately with GP

What a brilliant post. I'm in this situation again right now at my practice. My niece suggested i say to my GP " why do you insist on keeping me ill"!!

LindaC profile image
LindaC in reply to Sallybones

It would surely be perverse to suggest that 'they're insisting on keeping us ill', BUT this is exactly how it seems. For ex. requesting tests be done [not thyroid], scans etc...'Borderline' and even 'Abnormal' comes back [patient checking it out online], nothing being said by GP and STILL they don't tell you, even where the issue is something where you could, if motivated and versed in, help yourself. This is now becoming too disgusting to be...

Sallybones profile image
Sallybones in reply to LindaC

So true! I used to get 'well its probably normal for you'! There I am hardly able to hold a conversation or hold myself up plus all the other underactive symptoms and not able to function as a human being. I'm so glad this post is on here. Wish I could get my GP to see it.

LindaC profile image
LindaC in reply to Sallybones

That is dreadful, to say that to you!! Not so sure that some of them don't take a peek! ;-)

Just the other day I had a doctor say to a student about me "this patient does like to bully us" because I had questioned a treatment, I told her what I wanted done and she did it. I told the student that there is nothing wrong with being assertive.

I now like to begin with "I read in the Lancet"...

LindaC profile image
LindaC in reply to serenfach

There certainly isn't and in this 21st C, perhaps they need to become accustomed to it!? Some patients are as qualified as they are, not in medicine but... they too can think! 😅

Yes it’s a good approach. My endo seemed quite impressed when I got my crumpled paper out and went through the list . I was still very poorly and my memory was so bad it was the only way to make sure I got my situation over. Sometimes I would just sit there and cry he never commented but just carried on quietly. I believe he was a man of some compassion, he certainly knew what he was doing following a Toft approach to optimisation. Pity he did not suggest T3 when I still felt ill but I didn’t see him once I was headed for better numbers.

Yeah they are not keeping me ill if I can help it!

Ah individuals asked to correct for systemic failings. Tale as old as time!

Wonderful thread of responses.

I do wonder if hypothyroidism has been pushed to one side as thyroid tests are useful in other diseases and conditions, and clinicians have lost sight of the fact that thyroid tests are useful in thyroid disease.

And there are so many people affected and the number increasing that it would bring down the referral to Endocrinology 'system' if we all got referred at once.

We've always been told there's safety in numbers, not sure in our case that's correct.

I'm waiting to hear who is to be the new Patient Safety Commissioner.. a position devoid of any governmental oversight, but now enshrined in law since April.

helvella profile image
helvellaAdministrator in reply to linda96

The government amendment delivers on the second recommendation of the Independent Medicines and Medical Devices Safety Review, to establish a Patient Safety Commissioner (PSC) for England.

gov.uk/government/publicati...

Note for information: England - not Northern Ireland, Scotland nor Wales.

There have been several replies/threads on Twitter to this subject on the Women's Hour Twitter account :

10th June : twitter.com/BBCWomansHour/s...

10th June : twitter.com/BBCWomansHour/s...

12th June : twitter.com/BBCWomansHour/s...

I just listened to the Woman’s Hour edition on sound-cloud and finished up feeling it was an excellent programme covering everything it should have covered. Walking the walk should be done by the larger charities representing common and less multisystemic autoimmune diseases such as Thyroid UK.

So I’m truly dismayed with some of the responses here. If a patient community as large as this one can’t just be 100% behind Emma Barnet’s excellent challenging of Nadine Dorries on this programme and look at the bigger picture she covered - then frankly I’m very disappointed in this HU community.

Multiple autoimmune disease syndrome got a proper mention for once and that was a massive win. Almost everyone I know with a rare autoimmune disease also has a common one like Hashis so you are all covered by default. Medical gaslighting needs to be challenged and this won’t happen if people here obsess on everything being about the thyroid. Not everything autoimmune is about the thyroid - it’s just one piece of many pieces in the bigger picture

The fact that they are saying now that the emphasis of research is going to be on the whole autoimmune spectrum rather than any single autoimmune disease - was profoundly cheering to me.

I was diagnosed with Hashis 20 years ago and since then have been landed with RA, Sjögren’s and systemic sclerosis plus others with question marks hanging over them. My disease is one disease and it has my name on it. I don’t expect them to mention any of its components - common or rare.

I can’t even get a GP to see or speak properly to me now because I’m under so many specialists, some of whom are the wrong ones while the right ones such as gastroenterology and colorectal have discharged me as too complicated with untreatable conditions such as intestinal failure including GERD, severe gastroparesis and bowel dysmotility.

Which forum to I turn to for these? None actually because the causes of mine are autoimmune and particular only to me. I don’t want people asking what I eat when I’m now on a liquid diet. There’s way too much food shaming on here for starters.

So frankly I don’t give a stuff about disease labels or which ones are worse, common or rare.

If I try to raise awareness personally then it’s for rare diseases - particularly autoimmune ones which no ones ever heard of - especially not GPs.

So in my book it’s just so mealy mouthed to say “I got angry that hypothyrodism didn’t get a mention”.

If I had my way all autoimmune diseases would be represented under one large autoimmune charity which could be on a par with Versus or Cancer Research. That would be the community for me. I haven’t got the time or energy to worry about which meds I take, which fillers they contain - what my TSH or FT3 or FT4 ranges are. I don’t want to live out my life trying to work this stuff out myself or endlessly fight battles with often useless doctors for this or that.

In an ideal scenario I’d have access to an immunology consultant as my lead and they would make all decisions with me about how to monitor all my autoimmune shades given they are all part of one and are unique to me, my genomic profile, my life experiences etc etc.

And I was SO reassured to learn from the consultant at Royal Free that this might actually become a reality - multiple autoimmune syndrome at last being understood as one huge heterogeneous disease in its own right rather than a whole ton of far flung diasporas.

So shame on anyone here or elsewhere who turned off or wrote to woman’s hour just because their one common, non systemic autoimmune disease didn’t get specific mention.

I know as sure as 💩 that it will only be when ALL of us with autoimmune diseases choose to stand together in solidarity with the full spectrum and beyond that we will actually walk the walk rather than just talking the talk on single health issue communities such as this one.

Sallybones profile image
Sallybones in reply to 282523

Can't argue with much of your sentiments but think you're being slightly harsh. People feel how they feel and most are doing their best to do the best they can in their circumstances. That would be my ideal scenario too btw.

282523 profile image
282523 in reply to Sallybones

Well yes maybe but perspective is all and I’m so glad you have perspective on this bigger aspiration too.

I admit I’m feeling extra cross about these comments now that I’ve listened to the programme in full. Many with my rare, disabling and isolating multisystemic autoimmune diseases as well as Hashis would feel similarly hurt if they read these comments I think.

I’m not complaining that, when they said rare Autoimmunes they didn’t actually mention the names of any, including mine. RA, MS and Lupus are relatively common too and most have heard of them but I’m not resenting that they focussed a bit on these rather than raising awareness for scleroderma or Sjögren’s or Myositis. That would be so petty!

So the idea of all these people here writing to the bbc to complain just because thyroid diseases weren’t specifically mentioned depresses me greatly when this programme was so hard hitting and timely. It actually makes me want to weep that people can be so small minded about such a massive issue when some of these really terrible autoimmune diseases such as Systemic Sclerosis still have no treatments at all.

helvella profile image
helvellaAdministrator

This post has had a thorough airing, thank you contributors, and is now getting out of date and likely to meander.

I shall now close it to replying.

The ability to reply to this post has been turned off.

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