Re: Thyroid forum is back online

[Guest guest]

Thanks for that Steve

I see that Dr Perros reckons the thyroid hormone 24 hour urine test is a load of

rubbish! Trouble is no one can now reply and refute this or, indeed, reply to

any of the " experts " replies!

The experts have very closed minds.

Jane

>

> The thyroid forum is back online

>

> http://talkhealthpartnership.com/forum/viewforum.php?f=123

>

> The " experts " have been adding replies over the last 10 days, so I don't know

if it's going to tell us anything useful, and it's locked so nobody can add

anything.

>

> I know that my last post (uncontentious) remains unanswered

>

[Guest guest]

Steve, it hasn't been off line. However, it has only been

accessible with a specific password and has been left open in order to give the

thyroid experts the opportunity to respond to the many questions that were

asked, that the nine of them were incapable of doing within the allotted time.

The administrators must have removed hundreds of questions because initially,

there were 5 pages, and this, by the end of the online clinic had been reduced

to only 3 pages of questions, and I believe the number of questions asked has

been reduced still further. The administrators promised me that they would send

me a note to let me know when they had answered all the questions and they

opened the clinic again so we could check their responses. I, like many others,

am not holding my breath and do not honestly expect they will respond to any of

my questions - if there are any left. Most of my questions have been removed

almost as quickly as they went on. The BTA are the BTA and we know what to

expect from this organisation.

Luv - Sheila

The thyroid forum is back online

http://talkhealthpartnership.com/forum/viewforum.php?f=123

The " experts " have been adding replies over the last 10 days, so I

don't know if it's going to tell us anything useful, and it's locked so nobody

can add anything.

I know that my last post (uncontentious) remains unanswered

No

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[Guest guest]

Hi Sheila

The Talkhealth forum IS available to view. The five pages have been reinstated but the 'experts' practically pounced on those which had not had any interference from other patients, and which were also easy to answer. There are many questions which have been answered in the biased BTA way.The links are http://talkhealthpartnership.com/forum/viewforum.php?f=123 and for 'Talking to doctors' http://talkhealthpartnership.com/forum/viewforum.php?f=194 The locked key signs are simply to show that it is archived and no one can respond. I am not surprised by the responses - I wished I hadn't read them!LoveJacquie xxx

[Guest guest]

….and haven't they shown themselves up for this? It's all out

there now for everybody to read. I think they have kicked themselves well and

truly in the butt!

Sheila

The experts have very closed minds.

Jane

>

> The thyroid forum is back online

>

> http://talkhealthpartnership.com/forum/viewforum.php?f=123

>

[Guest guest]

I remain horrified by the lack of understanding from the very people who ought

to understand this illness better than anyone else (by that I mean those doctors

who don't have a thyroid problem) the fact that with what they must see in their

clinics they still persist in thinking that it is okay to leave people to suffer

and persist with ruined lives is intolerable.

It would do them all a lot of good to have to live with the symptoms we struggle

with day in and day out.

Thank God for this forum and for the internet, at least we now have the option

to self treat but I remain horrified that this is the only option open for so

many of us, it should be the so called experts moving this whole thing forward

and offering hope. The reality is that there is more expertise on this forum

than in endocrinology in general.

The vast majority of people (in my opinion) probably do respond well to

conventional treatment BUT there is a very large percentage of people with a

host of symptoms in common that do not thrive and clearly have a thyroid problem

that remains unresolved. This group is not a small minority - it is a

significant number of people. This suggests to me that there is a part of the

thyroid illness spectrum that hasn't been properly identified - so where is the

research going into this group of people to identify the symptoms we all seem to

have in common and to look at what the causes might be? where is the pioneering

treatment other illnesses get? where is the hope? No - rather than accept that

something is going on here the conventional line is 'we can't find out what's

wrong with you - therefore there is nothing wrong with you so go away and die. I

for one do not intend to do that, I may well die - I certainly feel ill enough -

but I will not go quietly.

I am disgusted, horrified and distressed by that on line so called clinic. I

really hope that all of us involved with TPA can work together as a matter of

urgency and turn ourselves into a thriving group who the medical profession will

no longer be able to write off and pretend doesn't exist. We must not only force

them to listen - we must force them to act - we must become the biggest, loudest

and most professional voice out there and we must be loud.

Sorry (I had to rant a bit) but I would like to say thank you to the people

here, and to Sheila who have given me responses to my questions and helped me to

unravel my thoughts a bit. I have lived with this thyroid condition since I was

10 years old, it has always been badly treated by the medical profession and

recently they very nearly convinced me that it all has nothing to do with my

thyroid at all. Having been off my meds for so long I now know beyond doubt that

my symptoms are due to my thyroid and I will fight to have it properly

recognised and treated. You guys have helped me a lot with that here - thank

you.

Let's start a very big campaign that can no longer be ignored - I'm in!

>

> ..and haven't they shown themselves up for this? It's all out there now for

> everybody to read. I think they have kicked themselves well and truly in the

> butt!

>

[Guest guest]

I wonder if these experts would go in a plane designed and built by 'experts' with the same skill and knowledge in the field of aviation as they have in the field of thyroid conditions.

Lilian

RE: Re: Thyroid forum is back online

….and haven't they shown themselves up for this? It's all out there now for everybody to read. I think they have kicked themselves well and truly in the butt!

Sheila

[Guest guest]

Hi all the so called experts have got it all wrong again. why am i not surprised , their is most certainly a link of autism and the thyroid/auto-antibodies. i have the files to prove it. i don`t trust any of them to look after my health. they need to update their knowledgebase before they reply. keep on doing the research and don`t let them take charge, they will only let you down. angel.