I have just listened to the Debate in Parliament regarding Liothyronine (T3) and it is thanks to the few staff (3) - probably their family members too - who have worked so hard to get to this point.
Without TUK we would be nowhere nearer to getting proper diagnosis and proper prescriptions that suit us, be it levothyroxine or T3 (or maybe with a bit of luck NDT). Neither would we have been aware of where to source hormones elsewhere (from members or this forum).
Those members of HU TUK who are not members of Thyroiduk.org.uk could, in some way, thank TUK by becoming a member. The more members the stronger the voice of TUK.
It doesn't cost much but TUK does have expenses, ie phone - research - travel etc etc and without them we would be nowhere at all.
I, for one, would not be well and energetic. Many on the forum too have found the members' information invaluable.
Yesterday's Parliamentary Debate about liothyrone T3 would have been unbelievable a couple of years ago. It also showed up the pharmaceutical companies pricing as astronomical, which we've known for a long time.
I agree Shaws, Lyn has been incredible and she has helped me so much. Nothing is ever too much to ask her and she always replies promptly, I would definitely suggest everybody become a member to support TUK and the valuable work they do!😊
Very well said. I joined TUK because of the great job they do. This forum alone has been more help to me than anything else. I cannot work because of my health and do not have a lot of money, but I felt it was important to support this wonderful organisation.
Debate was excellent. Let's hope it translates into action, not just words.
Well done to lynmynott and the Thyroid UK office team for tirelessly pushing this
Lord O'Shaughnessy invited everyone who had their T3 removed by NHS, or refused a trial of T3, to write to him with their case. I suggest people take him up on his offer. Perhaps a copy to Lord Hunt too
I shall be sending a Thank You card to Lord Hunt for bringing the matter to the House too
Lord O'Shaughnessy especially mentioned DNA gene aspect. So anyone who has tested positive with heterozygous or homozygous DIO2, but still been refused T3 is especially relevant.
But also anyone with gluten or dairy intolerance or gastris or malabsorption issues are likely to need T3 as well.....that's a very large percentage of Hashimoto's patients
I totally agree! Well done, what an achievement!!!
Yes, I'm joining too. I agree with everything. I've been helped more here than with my old, or current GP!
Thyroid 'care' is a real disgrace!
Patients returning, again, and again, to GPS, who begin the on going, derogatory, insulting, shared communication, with any other medic we are deemed to meet on our journey of trying to get heard and understood, and well!!
Drs Notes DO NOT ALWAYS TELL THE TRUTH - often times, they are Drs perceptions of (mostly women), returning patients who are viewed as hypochondriac or hysterical neurotics!
Let's hope that last night's achievement really does bring real change in how thyroid patients are treated.
Just to clarify my response. What I meant was....... Will the debate help towards the making of the new guidelines in November 2019?
I wonder if they are already set in stone and will not reflect any more input?? I am struggling to get an increase in levo (back down to 25mcg officially but increased myself to 37.5mcg 8 weeks ago). I have been Ill for 12-15 years, maybe longer.
Maybe you are forced to do your own thing. Many source their own medications and self-medicate. I was nervous at first but not any more. I think our families are even more nervous for us but when they see us getting much better it proves we were right and doctors wrong.
No good ones in my area unfortunately. Nothing in my area on TU when I looked and the ptivate one I was going to see has been removed. I asked for another nhs referral for second opinion just to see if any good.
I know I saw him in Birmingham in 2010, he told my gp dose and when to increase, but when bloods came back she told me I was at risk of heart failure and to go back down to 25mcg then eventually stopped it. I never saw him again, so wasted a lot of money getting nowhere. Recently re-started but again same thing. Problem for me is when I get to 50 mcg tests come back with TSH down to zero, unlike lots of others one here who can get up to high doses before this happens. Also I have adrenaline rushes at night, so my case is not that straight forward unfortunately. Need someone to look at the whole picture ideally.
We are dealing with ignorant doctors. It is just like us telling our children to turn the oven on at 10 so that a cake will rise. It wont - not until the oven is at a proper temperature. That's the same with us, our temp usually goes lower, and heart rate slows as well. As dose increases so does heart and temp.
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Thank you to all here
A huge thank you to everyone
Thank you and ending the battle
