Thyroid UK Support

Thyroid friends

ssarahstella
Posted by ssarahstella
23 Feb 2013
54 comments

Hi, I've started a small page on Facebook called thyroid friends. Feel free to join. It's closed group to keep it private. I just thought it would be nice to have place to go for any person that has a thyroid condition that wanted to link up with others. It isn't an advice page. I may have to edit the name of the page slightly as I've found a page with the same name which seems inactive. Ease feel free to join.

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54 comments

fletch27
fletch27
23 Feb 2013
Not sounding thick but how do you join?

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ssarahstella
ssarahstella
23 Feb 2013
Are you on Facebook Fletch? Sarah

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fletch27
fletch27
23 Feb 2013
Yes.

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ssarahstella
ssarahstella
23 Feb 2013
Just type thyroid friends on the search it at the top of the screen, 2 groups will come up with the same name, select the one with the picture if the bird and the page will come up and then press join group message me if you have any problems joining. Sarah

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LizaSahara
LizaSahara
23 Feb 2013
Can you copy and paste the link?

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ssarahstella
ssarahstella
23 Feb 2013
Hello I have replied further down xx

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LizaSahara
LizaSahara
23 Feb 2013
thank you x

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Kezzerb
Kezzerb
23 Feb 2013
Can we have a link please

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ssarahstella
ssarahstella
23 Feb 2013
Hello I have replied further down xx

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fletch27
fletch27
23 Feb 2013
Ok thanks we have a go at it abit later will have to get 1 of my kids to help as not got the patients to do anything these days but will definitely do it thank you.

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ssarahstella
ssarahstella
23 Feb 2013
Will be great to see you on there, really hope we can make it a real friendly page xx

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ssarahstella
ssarahstella
23 Feb 2013
Fletch27 seems its not a visable page, I'll contact you tonight once I've rectified xx

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ssarahstella
ssarahstella
23 Feb 2013
Fletch can you try thyroid friends 1 xx

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ssarahstella
ssarahstella
23 Feb 2013
I'm afraid I can't attach a link due to is being a closed group. If you are a Facebook user then type thyroid friend on the search section at the top of the screen select the one with the picture of the bird and join Sarah. If anyone has a problem joining I will look at the page tonight and see how Ivan improve things. I'm hoping it is simple to join for everyone. Sarah xx

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LizaSahara
LizaSahara
23 Feb 2013
I can't find you - you're not showing up in my search and I'm quite good with Facebook! x

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ssarahstella
ssarahstella
23 Feb 2013
I am at work at the moment. When I am home tonight I will update the page so it is more accessible. I will post on here later. I'm determined for this page to work. xx

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LizaSahara
LizaSahara
23 Feb 2013
Ok - thanx. The page is a great idea! x

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ssarahstella
ssarahstella
23 Feb 2013
Hi try thyroid friends 1. Sorry I couldn't find you via email I did try xx

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TTLady
TTLady
23 Feb 2013
Excellent idea, can't wait to join as soon as it becomes visible lol

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ssarahstella
ssarahstella
23 Feb 2013
Try thyroid friends 1 xx

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Kezzerb
Kezzerb
23 Feb 2013
I have searched thyroid friend all that comes up is a site called thyroid friends that was created 2011 also all that is on there are 19 likes nothing else. Also clicking on the website link it says it has expired I can only take it that this isn't your site. I can't find yours.

I personally believe it would be better to have a site other than Facebook to meet up on. It is not secure not to alarm you but with all the public interest for sure there will be trolls monitoring Facebook on behalf of big pharma. This site is secure. Facebook is good for sharing articles and petitions the such like but it is monitored this site will be secure.

My opinion is use the page to add every persons story through life event blog and post it on Facebook. I saw an article yesterday stating there were 300+ symptoms I think would be good to see an article with a title of how many sufferers there are in the world.

With everyone having a page with their story that would give a clear indication of how many there are and how many people are standing up for the cause.

As it is I see on all the thyroid sites on Facebook the numbers don't amount to that many.

Perhaps that's because they are using the main secure sites.

People need to read our stories there is not enough awareness we need support from not only the sufferers but the public.

People think because they don't have a thyroid problem it doesn't effect them. But they don't see the bigger picture.



Anyway these are my thoughts we all need to stick together and to bring about change this site is such an inspiration thank goodness I found it.

Love and peace to all .

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ssarahstella
ssarahstella
23 Feb 2013
Hi I'm having a few technical errors please try thyroid friends 1. xx

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parafluie
parafluie
24 Feb 2013
Seems if that's what you want, it would be a great idea for you to set this up! We all go to more than one site. Options are great.

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RedApple
RedApple Admin
23 Feb 2013
People need to read our stories there is not enough awareness we need support from not only the sufferers but the public.

Kezzerb, Maybe you're not aware that we have a place on the main Thyroid UK website for people's stories. Anyone here is welcome, and indeed urged, to submit their story for the website. The website is visible to all, so a really excellent way to make your story visible to the public.

We have headings to cover Hyperthyroidism, Hypothyroidism, Thyroid Related Mental Illness, Pregnancy & Fertility, Children, Mis-diagnosis, Adverse reaction to thyroid medication and Dangers of untreated autoimmune disease. If your story needs to be under a different heading, we will create one as appropriate.

So, everyone reading here, please consider submitting your story for the Thyroid UK website.

Here's the link to submit your story
www.thyroiduk.org.uk/tuk/ge...

You can also (if you are brave enough), make a video of your story to put on Thyroid UK's Web of Stories channel.
www.thyroiduk.org.uk/tuk/ge...

To see the stories, go to www.thyroiduk.org, then 'Get Involved > Case Studies' from the top purple menu bar.

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Kezzerb
Kezzerb
23 Feb 2013
I am fully aware thank you Red Apple and I encourage this site and the users. I think you may of misunderstood what I was saying. I have placed my story on here through the blog. However I was only giving my opinion to the title blog above and saying to use Facebook with caution. I have followed many protests on facebook and through my husbands security back ground i have been made aware of the insecurities through facebook. But I still believe there is a great need where our stories can be read Globally not just the sufferers. Non sufferers that are not being effected do not see the bigger picture it is in their interests too.

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RedApple
RedApple Admin
23 Feb 2013
Hi Kezzerb,

I don't use facebook myself, and hear what you say about security etc.

The main Thyroid UK website (not here on the support forum) is where the thyroid stories are. This link takes you there www.thyroiduk.org

These stories are visible all the time and can be read by anyone, at any time, anywhere on the planet. Anyone that has internet access and can read English can read them. There is no need to sign up to anything or be a member, or even suffer with a thyroid problem to read all the information on the main website. It's not hidden from view to anyone. It is there for everyone!

Just click the links I posted above and you will hopefully understand what I mean. It is a totally separate place to this forum where we are communicating with eachother. The main website is run by the same people as this forum, but it is a static website for information, not interaction :)

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Kezzerb
Kezzerb
23 Feb 2013
Hi Red Apple I am fully aware of everything you are saying. I was only commenting to the fact that sarahstella has set up a facebook page and I could not find it.

I and many sufferers are taking this very seriously the more people that are aware the nearer there will change.

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greygoose
greygoose
23 Feb 2013
But I don't think ssarahstella's suggesting that we should share our stories on facebook, just have a friendly page where people can say hi, something light-hearted to raise the spirits a bit and have a laugh.

At least, that's the way I understood it. There's enough heavy stuff around, we want something brighter, lighter but with a sense of comradship. There's enough room on internet for everything and everyone. Let's have some freedom of choice.

Hugs, Grey

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CarolynB
CarolynB Admin
23 Feb 2013
That's what I understood too. If it's a private group only members of that group will be able to see anything posted in it. I suppose it's a bit like the old-fashioned chat rooms. (I say "old-fashioned" - I still clearly remember the days before the internet!)

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greygoose
greygoose
23 Feb 2013
Yeah, whatever happened to chat rooms? I used to quite enjoy chatting with people in them. Did something replace them, or do people just not chat anymore?

Sorry, off subject again! lol

Grey

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ssarahstella
ssarahstella
23 Feb 2013
Hello grey goose the Facebook page I've set up is thyroid friends 1. X

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greygoose
greygoose
23 Feb 2013
Ye-es. I still can't find it.

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Kezzerb
Kezzerb
23 Feb 2013
I do agree with you greygoose facebook can be very helpful to picking your spirits up and sharing with amusement and closer contact. I was just raising awareness of the security caution.

Freedom of choice and freedom of speech. With you all the way.

Love and Peace Kerry

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Kezzerb
Kezzerb
23 Feb 2013
Thank you for that links I will submit my story.

I thought the stories were the blogs or profiles.

Anyway you learn something everyday on this site.

I support this site wholeheartedly.

Love and Peace Kerry

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ssarahstella
ssarahstella
23 Feb 2013
Hello everyone the group I'm hoping will be easy to find is called thyroid friends 1 please have a look on Facebook and join any problems get in touch x

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Kezzerb
Kezzerb
23 Feb 2013
I have found a thyroid freinds i not 1 is that the one? Thyroid sexy is on there and hypoman.

Remember there can be fake trolls that may want to join so be prepared.

See you on there.

Love and peace Kerry

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Kezzerb
Kezzerb
23 Feb 2013
Confused now it says it is a brisbane gold coast group

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Kezzerb
Kezzerb
23 Feb 2013
Blimmin eck I can't find it HELP LOL

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CarolynB
CarolynB Admin
23 Feb 2013
It's not appearing. It's not you, it isn't there at the moment ;)

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ssarahstella
ssarahstella
23 Feb 2013
It should work now x

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Kezzerb
Kezzerb
24 Feb 2013
Looks good to see how so many have joined already.

Just for your info I was advised on this site not to mention doctors names so as not to get any of them in trouble. It would be a good thing to mention to Facebook friends.

I hope people on your Facebook page keep up the support on this site and all the other thyroid sites.

Love and Peace

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parafluie
parafluie
24 Feb 2013
Instead of our finding wrong results, how about posting the link to the page here? Thanks for taking the time to do this!

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ssarahstella
ssarahstella
23 Feb 2013
I am determined to do this site but my Internet connection is down now, can you all bare with me, when I'm all set up I'll do another blog. Really sorry guys. One way I know I can add you is if you find me on Facebook. Sarah Evans there's a picture of me and my little boy xx

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spareribs
spareribs Admin
23 Feb 2013
possibly quite a few sarah evanses 'tho? - will go looksie - what about Thyroid UK friends? just a thought to be different & anyone searching for Thyroid probs can have all the benefits? again, just a thought - feel free to ignore the suggestion, Jane :D

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ssarahstella
ssarahstella
23 Feb 2013
It should work now x

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fletch27
fletch27
23 Feb 2013
Sorry cant even find you on face but even if I did im using a different name perhaps you can find me my names is sonia wallace dont worry if you cant I will leave it.

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ssarahstella
ssarahstella
23 Feb 2013
It's a little frustrating fletch I have set it as an open group but know one can find it, please bare with me I will get back to you. I've just tried to find you but there are a few people with your name. What is your picture, don't worry though when group is properly functioning I will message you. Sorry that I'm having a problem but I will try my best to get it up and going x

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fletch27
fletch27
23 Feb 2013
Dont worry not your fault my my pic is just off me longish brown hair wearing a yellow top not to worry if you cant find me will leave it till you sort it out.

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ssarahstella
ssarahstella
23 Feb 2013
THIS PAGE IS NOW ACCESSIBLE PLEASE FEEL FREE TO JOIN X

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parafluie
parafluie
24 Feb 2013
Not to nag, but, in case you haven't seen my other requests, could you be so kind as to post a link to your page?

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ssarahstella
ssarahstella
24 Feb 2013
I can't I'm sorry. I'm not sure it's because I'm doing this from my phone. My Internet connection is rather frustratingly down, so I can't used laptop. If your on Facebook it easy to find, I think you probably do need a Facebook page to join x sorry I can't be more helpful right now. When I'm back online if I can post a link I will x

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Kas65
Kas65
25 Feb 2013
Hi Sarah,
Request sent...I'm Kathy S...thanks for giving us another way to connect :)

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GuardianAngel
GuardianAngel
24 Feb 2013
request sent on fb as Karen Benson aka guardian angel

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ssarahstella
ssarahstella
24 Feb 2013
Hi Karen hope you find the page useful x

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