Thyroid UK has been approached by a radio show for a case study. The presenter is hoping to do a programme about the problems we are having getting T3 prescribed and also about people having their T3 taken away from them.
If anyone is interested in supporting us in this please send me an email to enquiries@thyroiduk.org along with your name and age and a little bit about what has happened to you.
He is particularly interested in someone who has struggled to get T3 prescribed or who has just had their T3 taken away from them even though it has really helped them.
It would be fantastic if this were to go ahead so please do think about being a case study if it's relevant to you.
Written by
lynmynott
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I would love to help you if I could but it is NDT that I need. It would be great if you could get the presenter to get a follow-up programme on the various difficulties associated with getting NDT.
This is fantastic, we need more of this. I was just looking at the number of members on this forum, nearly 50,500. That is only the ones who have been lucky enough and found this forum. How many more are out there - flaying about on the internet looking for help that their own GP will not supply. Perhaps this is something else that needs to be addressed -the attitude of GP's not listening or taking their patients seriously. Reading posts on here I am appalled at the rudeness so may of us are having to put up with, from so called 'professionals'. They know HypoT can be potentially fatal - isn't that why it still comes under the 'Free prescription' remit. Yet they treat people presenting with symptoms, and even the ones who have been diagnosed, as hypochondriacs and depressives. It does not make sense.
Returning to my own surgery, of 20+yrs, after a year absence, looking after my mother, I found the surgery questioning my having t3. (the GP I saw admitted she did not know of t3 - scary. My previous GP had retired whilst I was away) I then had to chase the surgery to agree to put it on repeat.
Even the chemist was struggling with getting the t3 for me, because of costs - moaning to me about it. I felt 'guilty' for giving him the prescription to fill! I felt like saying I did not choose to have this condition, it is not as if it is self inflicted!
I would love to help too, if I could, but I have been on t3 only for approx 6yrs now. I'm one of the lucky ones, who is still getting it. But worried about the possibility of that changing.
I do hope this goes ahead. The number of people on this site should be testament to the poor treatment thyroid sufferers are enduring and the negligence of the GP system. Perhaps, if he hasn't already, this presenter should spend some time reading the posts on here. It would give him a good idea of the real, and very sad issues regards this subject.
I do hope so. My story goes back to my teens, and suspect all my life. I'm 55 now, and it took me till seeing Dr P 7 years ago, to get any sort of 'normal'. Turned out T4 was doing me more harm than good. So on T3 only, as I said, one of the lucky ones still getting it. But is there a possibility they can stop it at some point...I don't know, and a worry. I think the way so many people are being treated is unprofessional and in many cases 'negligent'. The more this journalist can do to help us all the better. Let me know if I can be of assistance. And best of luck for all our sakes. Regards
Never been able to get T3, been on Levothyroxine for 21 years, was never offered an antibodies test until I got wrongly diagnosed with bi-polar disorder, still can't understand why, I keep going for a thyroid function test, when my thyroid doesn't function, why don't they just ask us to go for a test to see how much synthetic T4 is floating around in our bloodstream. ?
I suspect your chances of getting t3 now are diminishing. I had t4, for years, never felt any better, lots of times felt a lot worse, and gradually worsened over 20+ yrs too. Fought to get to see and Endo - put on a small amount of t3 - helped but not optimal. Eventually had to go see Dr P - t4 toxic in bloodstream, body not converting/processing. Ended up on just t3. (For how long left on it with GP - who knows) Works so much better - for me. GP's forget we are all different and some of us might be 'wired' differently. I think Dr think that if you have a thyroid problem they can just give you t4 and it makes it better, so, if you are still presenting with symptoms, it is either in your head, depression or something else. Even when nothing else presents, they will not consider, for a moment, that this 'be all and end all' t4 might not be everything we need. Lack of training and interest on their part might just end up it being 'end all' for some of us!!
Hard as it is, when you are feeling like no one is listening and you are becoming more and more ill, try to keep you head up and hold onto some fight...don't give in to it and the poor treatment. There is still some help out there, particularly on here. Good luck
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