Following on from Rapunzel's post about TUK mission statement and how we could do with a campaign or high profile celebrity to raise awareness, I just spotted this article in the Guardian today.
I wish them every success in trying to find better treatments and diagnosis for a truly awful disease. I also wish Thyroid could have a similar set up, with more investment, research and clinical trials.
I don’t have endometriosis BUT am I right in thinking it can be linked to thyroid issues? If so maybe this could be brought up within this research. It’s an awful lot more scientific than anything going on in hypothyroidism. A wide look at many issues. Are these people interested in patients? Yes! Compare this to Professor Pearce’s pathetic attempt at research.
This could be the sort of thing TUK could ‘speak’ to.
If Paul Robinson can't manage it healthunlocked.com/thyroidu... (look at how many years have passed...)
Perhaps we're doomed ☠️ to just being a group of 'old wives' sharing personal testimony. We've tried being stakeholders in government investigations, lobbied medical journalists, signing petitions, reposting Malcolm Kendrick.
Nothing freaking happens. Be the change you want? I'm too tired 🥱
Yes. Don’t actually disagree but this is how change happens. A bit at a time. You remember that old joke “How do you eat an elephant?” “One bite at a time.”
I think you might have been a bit of a battler in your time. Me too, which makes all this all the more horrendously frustrating (I think). We are used to getting things done. Moving things along. This illness takes all that away from us. For me it just might be my worst symptom. No zest for life. But it’s all in the memory banks.
PaulRobinson and Malcolm Kendrick have achieved wonderful things. However disappointing it is that major changes on the main stage have as yet not happened. The building blocks they have created are amazing. And they are directly helpful for us right now and for others in the future.
I keep looking for that time when I won’t be too tired. It’s a job that really needs doing. I am not suggesting I can do it but to be a part of the necessary change is enormously important. Pearce, whilst clearly not fit for his job and who appears not to be very clever, has climbed his way up the greasy pole. Where I come from he would be described as ‘fly’. Enough brains to care only for himself whilst managing to all intents and purposes to look like he is doing the job. Well we know for sure he is very bad at his job. It’s an art and hopefully it’s not just us who see through it.
I am happy to read your honest remarks. I struggle with this Sh1t 24 hours a day too. Off course it’s extremely bloody wearing. But your light definitely shines through. Too tired or not!
I for one enjoy your posts, your outlook, your foresight, your humour. Too tired or not!
Thanks, bae. That was soothing. 🤗 I wish I could say that my earlier reply ( no harm meant to you, Sparklingsunshine )was my period talking, but those days are long gone. I wish I could say that something happens. There's the forum. That's about it, so far as I can see. I'm jolly grateful for its existence and the wise people who work so hard {admins of the decade!} to keep it going.
Well, I'm happening. We're happening. Head down and forge on, I suppose. Just so ticked off atm...so many suffering and so little movement forward.😔
Well said.
Yes. Older people are particularly at a disadvantage,even more so if one has Thyroid disease. My Doctor’s surgery seem fixated on age. Most symptoms are explained by my age. Eventually I said to one of them that just because two factors appear together, it doesn’t mean that one causes the other!
This comment is usually followed by a patronising smile from them but the truth is that I have had most of these symptoms for most of my life. Then, they were explained by, ‘you will grow out of it/because you are pregnant/ post pregnant/peri menopausal/post menopausal…..all blithely offered as a cause. I find it infuriating, lazy medicine and in most instances, just plain wrong!
I've seen members on here patronisingly dismissed with " its your age" when they were under 40! Unbelieveable. I get everything blamed on Fibro.
I've ranted at length about the myopic doctors I've consulted over the years, I'm not going to do it today lol. I agree 100%, its lazy, cba ( cant be arsed) medicine. They do the very bare minimum but are very keen to get us taking antidepressants.
Very odd how they can diagnose low mood just from symptoms, but thyroid problems its always a blood test, and if in range then it couldn't possibly be that.
Sparklingsunshine if they never test FT3, then they will never know, will they! My mood lifted within 3 days when I started NDT.
Great idea but not sure who could do this. In the news at the moment, Liam Gallagher has Hashimotos and over in the USA, Oprah Winfrey and Kelly Clarkson both have thyroid disease. They cannot be the only high profile people out there. There must be more and in the UK too but many "celebrities" won't want to highlight any sign of being less than perfect.
In the US Hillary Clinton is also hypothyroid and she takes NDT. Here in the UK another famous hypo was Mick Hucknall of Simply Red but he claimed to have been ‘cured’ by thyroxine… 🙄
Sarah Vine from the Mail takes NDT I think, not sure I'd see her as an advocate for the rest of us though.
Lynne McGranger, long cast member of Home and Away Australian soap has just had a total thyroidectomy. Davina McCall is also hypo. There must be a way to get someone famous involved, but we've tried with no success yet.
Keep plugging away at them all @everyone ! Try Instagram, Twitter, Facebook, email, whatever. Give them the contact details for Thyroid UK. ITT Improve Thyroid Treatment Group (on Facebook) has been trying for ages too.
Carol Voderman is hypo, maybe we could get her on board, she's pretty forthright. My issue is though that these high profile celebrities, if they dont get on with just Levo, can afford private healthcare, can access alternatives like NDT, T3. They are considerably better paid than the rest of us.
So they dont really understand being at the mercy of the NHS and left on the cheapest treatment. I dont blame them, looking good is their bread and butter, so its in their best interests to try alternatives. Also admitting they feel like crap could damage their image and career prospects. So how helpful they would be is debatable.
helvella Has compiled a long list of well known/famous people with thyroid issues in his downloadable document (called Vade Mecum for Thyroid). Click on this link to download the pdf then scroll through to page 48 dropbox.com/s/vp5ct1cwc03bl...
I've said this before. It's a shame Davina McCall doesn't do for the thyroid world what she has done for the menopause world. She's obviously doing well just on thyroxine, if she hadn't and had the battle herself to get T3 prescribed then she might have took up the fight
I’ve always thought she might actually be the type to be secretly taking T3.
But she’s hitched her brand to menopause because of the wider reach, I suspect. Her private income does come into this—and there’s more demand for her pitching content about how to manage the menopause, with it also being far less controversial.
What is the best selling point for asking for NDT please ?
WHAT CAN WE DO need T3 
I am still all for my coconut oil, ghee, and olive oil, only cold on salads, but this article is very interesting.
What foods are bad for the thyroid?
What test is this?
