Re: Another one in the public eye...

[Guest guest]

That's the problem, ... they NEVER seem to get reported. I don't know

whether it's their managers or publicists or what, but you rarely hear anything

more.

I honestly wish at least ONE of them would speak out unless they ALL get on with

Thyroxine only which I doubt is true.

Love

Jacquie

-

> Here's a link to a BBC story about sailing Hopeful Nic Asher who feels

dreadful as he has just realised he has a thyroid problem....

>

> http://news.bbc.co.uk/sport1/hi/sailing/13809908.stm

>

>

[Guest guest]

Because if they do not get on with thyroxine alone they are told it is not their thyroid it is something else. So there cannot be a follow up to a thyroid story because the powers that be say the thyroid is OK.

Lilian

That's the problem, ... they NEVER seem to get reported. I don't know whether it's their managers or publicists or what, but you rarely hear anything more.

[Guest guest]

Actually, Lilian, I just remembered Holmes... and even though she

campaigns and has written a book, it doesn't seem to have made much difference.

Even Zeta- and her husband, , got duped by doctors

because they didn't diagnose his throat cancer even though he was so ill and

kept complaining of symptoms. But what has happened to these doctors... I've

heard no report of her suing them.

It leaves it to us 'little' people to fight for justice - there is strength in

numbers. I think sometimes, that these 'stars' don't have it in them to take on

the establishment single-handedly.

I am also aware that they go on forums like ours to find answers... this was in

one of Shoman's articles where she listed some famous thyroid patients and

others who have used her site because they felt as if they were going crazy.

So, yes, you have a point, Lillian... they are duped, just like the rest of us

were!

Love

Jacquie

________________

Because if they do not get on with thyroxine alone they are told it is not

their thyroid it is something else. So there cannot be a follow up to a

thyroid story because the powers that be say the thyroid is OK.

>

[Guest guest]

Oprah?

Here's a link to a BBC story about sailing Hopeful Nic Asher who feels dreadful as he has just realised he has a thyroid problem....http://news.bbc.co.uk/sport1/hi/sailing/13809908.stmSo, that's Shaun Ryder, Nic Asher, and was there was someone else recently?be interesting to see how their stories are reported if they don't do well on Levothyroxine.....

[Guest guest]

And then treat them with drugs and surgery and invasive proceedures for the other symptoms....and make lots of money out of them while they live a life of misery and their career and family are also affected too....

Subject: Re: Re: Another one in the public eye...

Because if they do not get on with thyroxine alone they are told it is not their thyroid it is something else. So there cannot be a follow up to a thyroid story because the powers that be say the thyroid is OK.

Lilian

That's the problem, ... they NEVER seem to get reported. I don't know whether it's their managers or publicists or what, but you rarely hear anything more.

[Guest guest]

Could we Thyroid groups across the globe get together and arrange a rally and march on our streets and give a list of signatures to our governments to do something....The docs are killing us and not with kindness...We could organise it to happen on International thyroid awareness day.....and whilst we march then our 'leaders' such as Sheila and Diane Holmes, etc could be speaking on radio and TV.....we HAVE to get them to listen to us somehow.

Sally xx

Actually, Lilian, I just remembered Holmes... and even though she campaigns and has written a book, it doesn't seem to have made much difference. Even Zeta- and her husband, , got duped by doctors because they didn't diagnose his throat cancer even though he was so ill and kept complaining of symptoms. But what has happened to these doctors... I've heard no report of her suing them.It leaves it to us 'little' people to fight for justice - there is strength in numbers. I think sometimes, that these 'stars' don't have it in them to take on the establishment single-handedly.I am also aware that they go on forums like ours to find answers... this was in one of Shoman's articles where she listed some famous thyroid patients and others who have used her site because they felt as if they were going crazy. So, yes, you have a point, Lillian... they are duped, just like the rest of us

were!LoveJacquie________________Because if they do not get on with thyroxine alone they are told it is not their thyroid it is something else. So there cannot be a follow up to a thyroid story because the powers that be say the thyroid is OK.>

[Guest guest]

Sally, if you feel you can 'muster the troops' you are very

welcome to take this on. It does appear that we all want this to happen, but

when it comes to Hey Lad Hey - everybody vanishes into the woodwork. I did open

an forum especially so that all of those interested could join forces and carry

on discussions and make arrangements through that. Believe it or not, I

actually managed to get EIGHT interested enough to join the Forum, but it

appears to have fallen flat on its bottom. However, if you are serious about

this, and I believe Angie (another very new member who attended our TPA

conference) is also extremely interested in getting this off the ground too, so

perhaps between you, you might be able to whip some life into this. Here is the

link if you wish to join this Campaign Forum ThyroidDem-Committee

and anybody else who wishes to join - just sign up and let's get something moving.

We have an on-going  Petition 'PATIENTS'

PETITION FOR BETTER DIAGNOSIS AND TREATMENT CHOICE FOR HYPOTHYROID PATIENTS' http://www.tpa-uk.org.uk/international_patientpetition.php

hosted by Dr Thierry Hertoghe's web site where we have, to date, 2563

signatures, with some heart-breaking comments. If you have not signed this,

please do so and pass it on to any other Internet Thyroid Support forums or web

sites asking them to sign it too.

Not sure what Holmes is doing these days as I hear very

little of her, and Shomon is in the US and would be doing her own thing on

her own Thyroid Awareness Day. One thing I have come to learn, and that is

thyroid group leaders seem very reluctant to join with others, so I have given

up trying, and know that if we want something done, rely on nobody and Do-It-Yourself.

Tomorrow, hopefully, just might be the start, because to date, I

am not aware that any other newspaper has actually even got near to telling the

TRUTH and given the FACTS of what those suffering the symptoms of

hypothyroidism are actually being put through by organisations such as the BTA/RCP. 

Everybody, buy The Mail on Sunday and when you have read the article, write a

'Letter to the Editor' or go to the Online version and make your comment

telling YOUR own experience.

Luv - Sheila

Could

we Thyroid groups across the globe get together and arrange a rally and march

on our streets and give a list of signatures to our governments to do

something....The docs are killing us and not with kindness...We could organise

it to happen on International thyroid awareness day.....and whilst we march

then our 'leaders' such as Sheila and Diane Holmes, etc could be

speaking on radio and TV.....we HAVE to get them to listen to us somehow.

[Guest guest]

My own view is that it would be more effective to invoice the NHS for all the medication costs that individuals have had to cover themselves whilst self-medicating. If the NHS/government/local health authority had to think about paying, they might take it a bit more seriously. A demonstration is easier to ignore and it's important to focus activities, especially with limited resources. When I do eventually get better, I shall certainly be looking into charging the NHS for all the costs I've incurred.Having said that, I would also be happy to support any demo - body willing - but I know it's a lot of organisation. A demonstration would be more effective outside GP surgeries or hospitals - it would need to be focussed. That's my rather rambling thoughts for now.All best, Alison>> Sally, if you feel you can 'muster the troops' you are very welcome to take this on. It does appear that we all want this >

[Guest guest]

Alison, it is best then that you also join the Demonstration

Forum where you can discuss such matters. Help will be needed however small

that would be, even being there as one willing to stand up and be counted.

Check

ThyroidDem-Committee/

Luv - sheila

My

own view is that it would be more effective to invoice the NHS for all the

medication costs that individuals have had to cover themselves whilst

self-medicating. If the NHS/government/local health authority had to think

about paying, they might take it a bit more seriously. A demonstration is

easier to ignore and it's important to focus activities, especially with

limited resources. When I do eventually get better, I shall certainly be

looking into charging the NHS for all the costs I've incurred.

Having

said that, I would also be happy to support any demo - body willing - but I

know it's a lot of organisation. A demonstration would be more effective

outside GP surgeries or hospitals - it would need to be focussed. That's my

rather rambling thoughts for now.

All

best, Alison

__

[Guest guest]

Hi Sheila,

Just got back and opening a few of the many emails in my tray....

Yes, I am aware of this kind of thing. Years ago as a Midwife, I worked in a midwifery unit and the system left us dangerously short of midwives, especially at night. One midwife in the unit to look after labouring women AND 26post natal mothers and babies PLUS the whole area of telford newtown and newport and north shropshire!!!!!!! Honestly. I had a situation one night which was quite extraordinary, but had previously had close calls.....other midwives felt angry too......so they said come on Sally get out there and we will follow you....Ha!

Yes they did until I opened the door to the office and suddenly I was completely alone!!!!! you could see the whites of their eyes in the dark......

So looks like its you and me marching then! tehe.

Well just at the moment I am busy with work and moving my daughter....BUT.....if no-one else does it when I get time.......that is the big hurdle......

Surely we all feel strongly enough about our own health?......I certainly feel frustrated and angered by what happened to me and others and to my daughter who is in the same situation. My mum died as a result of poor care, etc.

Thank you for the links and I will head to both tomorrow now... Have been to London and back today so feeling tired, and I have to work on the building site tomorrow.....so now I'm off to bed...sorry about the newpaper..I did buy one...argh. Just wanted to answer so you didnt think I was avoiding you Sheila.

Much love...and well done for your efforts, will try to help where I can.

Sally xx

Sally, if you feel you can 'muster the troops' you are very welcome to take this on.

moderated to remove old messages...... (sigh!!)