Thyroid UK Invited to Round-Table Discussion at... - Thyroid UK

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Thyroid UK Invited to Round-Table Discussion at Scottish Parliament

lynmynott profile image
lynmynottPartnerThyroid UK
22 Replies

Lyn Mynott has now received Thyroid UK’s invitation to the round-table discussion at Scottish Parliament where the Scottish Parliament Public Petition PE1463 on effective thyroid and adrenal testing, diagnosis and treatment will be discussed.

For more information go to: Lyn Mynott has now received Thyroid UK’s invitation to the round-table discussion at Scottish Parliament - tinyurl.com/me476z9

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22 Replies
Totoro profile image
Totoro

This is good to hear.

I hope that the "establishment medical bodies" who are invited will listen to what patients are saying (through Thyroid UK). I always read that they say there isn't proof that T3 works or is any better for some people. But there is so much patient proof that it works. That kind of evidence is ignored by them. I'm on T3 only and they don't even mention it as a treatment possibility. I really hope they start listening to patients.

Totoro x

lynmynott profile image
lynmynottPartnerThyroid UK in reply to Totoro

The DIO2 faulty gene study is one thing I will be bringing up. This shows that some patients do better with the addition of T3. More research needs to be done and I will be pushing for this especially research that includes patients being involved other than as subjects!

Totoro profile image
Totoro in reply to lynmynott

Will they take as "evidence" that thousands of patients are already taking T3, in combination with T4 or on it's own? They wouldn't be taking it if it didn't help.

I think of all the patients who are told they are "normal" after they've been given some T4 and are never told T3 exists. The first two endos I saw didn't even tell me about it. They are hiding a treatment from people.

Totoro x

lynmynott profile image
lynmynottPartnerThyroid UK in reply to Totoro

Since there are now European Guidelines on the use of adding T3 to T4, endos should be open to using it. I will be pushing this point too! :-)

in reply to lynmynott

I have it in writing from my endo that some patients 'do better with additional T3'-at least that's one that agrees! Good luck, Lyn, this is great news. x

Zephyrbear profile image
Zephyrbear in reply to Totoro

Thankfully I have one of these 'far-sighted' endos who was prepared to treat me with a T3/T4 combo just over 2 years ago, and since virtually reducing the T4 to nothing and replacing it with the T3 I haven't looked back. I still have a few issues such as the 3 stone weight-gain around my middle and boobs that just won't shift and a degree of muscle weakness, but my mind has cleared of fog and I am now in my last year at University doing a BA (Hons) History and Creative Writing course! I have my enthusiasm for life back, even with the restrictions this bloody awful disease has wreaked on my body, and my sense of humour is keeping the depression at bay! If they want proof that T3 works... I am it!!!

PinkNinja profile image
PinkNinja

Brilliant! I'm sure if anyone can make them listen it will be you, Lyn :)

lynmynott profile image
lynmynottPartnerThyroid UK in reply to PinkNinja

Hi CarolynB, All I can do is my best! I just hope the other invitees do attend!

roslin profile image
roslin

could you let us know when it is as I would like to attend

Roslin

lynmynott profile image
lynmynottPartnerThyroid UK in reply to roslin

Hi Rosyn, I'm afraid it's by invite only. They invited TUK so that we can put forward the patient perspective.

shaws profile image
shawsAdministrator

Lyn, well done. We have so much to be thankful to you and your assistants for working so hard and setting up Thyroiduk.org and helping us recover our health (when GP's/Endos are willing to prescribe.

Look forward to the next Scottish Parliament session.

LouiseRoberts profile image
LouiseRoberts

1st October. :)

in reply to LouiseRoberts

Thank you Louise Warvill :))

Natalie_Edinburgh profile image
Natalie_Edinburgh

Is a representative from the BTA going to be there? They should be as these are the people that have huge influence in the treatment of thyroid disease and they need to be made to listen.

lynmynott profile image
lynmynottPartnerThyroid UK in reply to Natalie_Edinburgh

Hi Natalie, We hope they are going to send a representative but who knows if they will? I expect the RCP will be invited too but they didn't even respond to the Scottish Parliament when asked for a submission so I doubt if they will turn up.

in reply to lynmynott

Hi Lyn i spoke with the petitions clerk today and apparently the parliament can compel attendance at this session whereas they had no powers to compel a response to written questions. It's rarely used as most organisations do turn up so we shall see. I was concerned there would be wasted seats if the RCP didn't show up but looks like that won't be allowed to happen!

Totoro profile image
Totoro in reply to

Do you know which groups have been invited?

in reply to Totoro

Hi Tortoro, good to see you again! ;-) Among others, the RCP, GMC, BTA, Professor Toft, Someone from soc for Endocrinologists, Micheal Matheson,, Minister for public health and officials, Alex Neil Health Minister and officials plus of course Thyroid uK

tegz profile image
tegz in reply to

Looking good.. RCP can't refuse to attend!

Totoro profile image
Totoro in reply to

Good to see you too :-)

And good luck in the meeting. I worry that the invited groups are mostly doctor focused groups and not patient focused. I hope they don't gang up on you and bully the patients/patient representatives!

Totoro x

in reply to Totoro

It's important to see this meeting in the right light. These people are being asked to come and account for themselves to the Petitions committee really, to explain their dogged adherence to the status quo, in spite of the wealth of disquiet and contradictory evidence. We are only at the start of the process and there is more to come, when we will proffer our own specialist supporters to say their piece. The old 'them and us' adversarial approach others have advocated did not get them far and we have method in our supposed madness so fear not my lovely xx

in reply to lynmynott

This shows them in their true light , very rude

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