Dear all. On the 25th of may 2020 is world thyroid day. What we would like to do on that day is to coordinate as many people as possible in any way we can to make our collective voices heard for all those that are still suffering with thyroid issues for as we know, many reasons. We would like to use this day to coordinate a March plus radio and press releases and also emails. The aim is to give maximum coverage to our plight in one day and to bring it to the full attention of the media and general public. If you have any ideas or would like to be involved please comment, we would love to hear from you.
Your thyroid community needs you. We can make a difference together. X
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jan61
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Not sure yet. We need some suggestions. London would seem the most logical high profile or maybe we can coordinate more than one in different parts of the country x
This is why we need more suggestions helvella. This is a feeler post at the moment to see the level of people that might want to get involved. Thyroid issues affect us all no matter where we are. There must be away of coordinating all of us everywhere x
All thyroid patients red apple. I've been helping with itt action campaign in my own small way researching for papers and info that may help. Mine was one of the cases that also went to the house of lords and parliament. My t3 also got stopped by the NHS x
So this post by you is on behalf of ITT? Are ITT going to organise/co-ordinate this? Who can members that wish to support this make contact with to offer their support?
Yes reply on here or the itt action group please. This is a feeler post to see what the response might be so we can then get organisation put in place with contacts x
We could all march on Westminster carrying banners and demanding better treatment! I am just joking btw because most of us would be too exhausted to march.
I know a March would be difficult for so many but maybe some sort of protest or delegation at the nice head quarters as helvella suggested and others could be involved emailing from home or interviews? X
I was having a “chat” with MichelleHarris on a thread 7 days ago “Putting people with hypothyroidism through hell” on this forum. Sorry, I don’t know how to link it here. We sort of decided that every UK Member of this forum should write the same letter to our MP. If you can find that thread and see what you think
Hi Jan, have you looked at the thread from 7 days ago and my “chat” with MichelleHarris where we thought about a letter (e mail) to our respective MPs. If we could organise something like that as well as a delegation to NICE HQ someone might take notice
Great idea will need something big so as many people are more aware and start taking notice we need better treatment Drs need educating. Some sort of March with a very large thyroid lol around the street of London then up to downing street ,we all need a snooze by then lol I'll would love to be involved in some way will get my serious thinking cap on inbetween brain fog
Could do with a celebrity being on our side. Someone like Dr Rangan Chattergee (might have spelt incorrectly), or one of the doctors off “Trust me I’m a Doctor”? Some of them are always trying to lobby big companies or the government for health reasons........
A little March on a Saturday will be great. I have no thyroid gland and very asthmatic. So cannot walk too long. Also because having my thyroid taken out body bloating from face to toes. Sometimes cannot walk in that condition.
Social media is a really powerful tool. If someone can design a simple logo/ribbon/image for Thyroid disease (think pink/red ribbons) Then ask everyone you know to post said image to their twitter/Fb/Instagram etc on May 25th get a hashtag to go with it etc. Tag people wth plc profles and ask them to retweet/post. It is a lot easier to organise global input that way then something like a march (especially with the majority of us having issues with potentially taking part in said march.
Perhaps, a good way to get attention, would be if we could get some posters designed, that draw attention to the terrible way Thyroid conditions are treated. Everyone could print them off and put them up around their local area, including outside medical centres, bus stops, shops etc, then hopefully we can publicly humiliate them into doing something about it.
Great thank you so much Darty. Maybe if we could get a template made up withs space for people to add a bit of their own story we could all send out emails to them as well. X
Does anyone know a coach operator who might donate a day in their area where people could be picked up then go to local venues and all get out and demonstrate eg Endo departments at hospitals ?
That's a good idea Lidoplace. I'm sure someone on one of the sites must have contacts. X
I love the idea, but I'm in Ireland. Have some ideas for posters, like, "they said it's all in your head", "here are some anti-depressants", "get up from couch lazy, what's wrong with you", "stop complaining, everyone has some anxiety", "you could lose some weight", "just get up and get some fresh air". You know what I mean. And all of them with "thyroid issues are more common than you think. No, we are not crazy".
I am happy to help with ideas, designs etc!
Also, about the march, it's still a good idea, our families could go or others who could make it, I mean I would go on a wheelchair to make a statement on how poorly we can feel at times and how housebound we can be. Might be extreme, but we need to raise awareness.
I would love to see a documentary on Netflix abour thyroid problems and poor treatment we get.
Imagine getting Liam Gallagher from Oasis speaking about his Hashimotos and t3 treatment he's getting . Maybe I'm just day dreaming...
I have been offered counselling and antidepressants by a couple of Doctors for my Graves' disease which I refused and quite frankly I found insulting. One Doctor actually wrote "delusional, contact mental health team" on my records when I had been suffering from untreated Graves' disease for over 2 years. I sometimes wish the Doctors who dismissed me would get something like this horrible disease and be ignored and left to rot like I was .....
Ah that's dreadful. I'm so sorry. I'm in a very similar situation be side I fought so hard to keep my T3 the lead endo wrote to my GP stating twice in a letter that I needed psychological help because I have very fixed ideas about my health! This is why we need to fight back on a large scale so they realise the actual scale of this isn't just the odd one or two. X
No I don't think it's a daydream ritatita. We need to start thinking big to raise awareness properly to show the full scale of how many are still suffering. Interesting about Liam Gallagher, I didn't know that.
Once we have a central point of contact we will put up a post x
I think that's a brill idea, get it noticed, too many people do not relate how bad it is. You explain to people what is wrong with you, and they reply "it's only your glands", they do not realise the distress and anxiety it causes and other health issues we have got to endure. Go for it!
Yes exactly hunni it needs to be put in such a way that people will understand more and be better educated how this terrible disease affects us all and on top of that the fight to get treated properly by Gps and endos that still have very little knowledge and could learn so much if only they'd listen to the patients xx
What about contacting Sarah Vine who is married to Michael Gove? She is prescribed NDT for her hypothyroid and has probably been suffering from thyroid disease for years. I believe that is one of the reasons she lost her hair and had to wear hair replacement by Lucinda Ellery.
Dame Maggie Smith has Graves Disease, believe she was treated with RAI :
I think Clare Balding had thyroid surgery ( cancer ) a couple of years ago :
P.S.
There should be a list already of all the people we came up with for the T3 campaign a few years ago : It might save time, to just focus on those who lent support last time around.
Fantastic thank you helvella. I think we are going to get a Facebook page set up just for this campaign with info hopefully attached and maybe a go fund me page to raise money for the campaign. Let me know if you have any further ideas xx
I think you need a petition signed by as many as possible [sorry, no idea how to co-ordinate] publicly handed in to No 10 with pics outside the black door, alongside patient interviews on a daytime TV sofa [this morning/Lorraine] describing the thyroid suffering and listing the problems with accessing diagnosis and proper treatment and maybe a piece on the ITV lunchtime news where you get a sympathetic Q+A from the news reader and some sort of online thing to go viral. Sorry I can't provide outlines or details for these - these are off the top of my head, but these are the things that grab my attention as I watch other causes [like the medical cannabis issue] get airtime and attention and think to myself "why can't we [thyroid illness] get that kind of publicity and concern?" You could call it "lost lives" - because that is what happens to you if you get these problems and they aren't treated or diagnosed - you lose any kind of a half decent quality of life.
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