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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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.
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!
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.
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
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!!!
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.
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.
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.
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!
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
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!
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
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