thyroiduk.org: Does anyone actually read pinned... - Thyroid UK

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Rapunzel profile image
44 Replies

Does anyone actually read pinned posts ? Does anyone search in the Search Thyroid UK box before posting ? There is a wealth of information on the Thyroid UK site and via perusing existing threads on the forum or is that too difficult?

This is not aimed at anyone in particular and no, I do not have the painters in. Ready for my holiday, maybe.

[ Edited by admin to add this link. The normal page only shows some of the Pinned Posts. You can see them all listed by following this link:

healthunlocked.com/thyroidu... ]

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Rapunzel profile image
Rapunzel
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44 Replies
Rosepetal60 profile image
Rosepetal60

I do, and on other HU sites too

Clarrisa profile image
Clarrisa

Hi Rapunzel, I did not at first. It took me a while to discover & figure out how to look past posts up. I have figured it out finally & do so now.

I remember a Respiratory Therapist walking into a patient's room & saying upon seeing his Foley catheter "That sends shivers down my spine" (he abruptly left the room). I think many people have differing parts of the body that send shivers down their spines when they see or think about them. Many people would have difficulty doing the type of work Respiratory Therapists do. Other's generous input on their postings may help them overcome such fears: on labs, symptoms, medical reports, blood pressure, white coats, asking for help, understanding doctor speak, reading about others experiences with a similar disease, etc.

I am sorry if my ignorance/fear has sent any shivers down your spine!

Greybeard profile image
Greybeard

It took me a while to find my way around the site, not sure I could be describe as competent now. Some of us arent particularly computer literate to start with and there is of course brain fog/fade.

Marz profile image
Marz

When I point members to the Search Box - Related Posts or Topics - I rarely hear from them again :-) There are of course exceptions ! Lets hope some of the 79,000 members will read your post - thank you for posting x

Taminaone profile image
Taminaone

Appreciate tips like that. I am a wrinklie and not computer literate and would have to even check again how to post a question I want to pose and also a private message! Be patient with such like me!

Marz profile image
Marz in reply to Taminaone

Do you use a phone/tablet or PC ? Easier to find on a PC !

helvella profile image
helvellaAdministratorThyroid UK

Is this worse than unexplained use of abbreviations and acronyms? :-)

Or txt-spk?

As in "u shd try ndt".

u - You; shd - should; ndt - Natural Desiccated Thyroid

Most especially to a new person who is unlikely to know what Natural Desiccated Thyroid is, even when typed out in full!

(I know I sometimes put an unexplained abbreviation or acronym, but I do try to avoid doing so.)

Valarian profile image
Valarian in reply to helvella

I have a personal prejudice against txt-spk - rarely necessary now that we have smartphones, predictive text etc. If someone clearly needs help, I do my best to ignore it, but on a really hyper day, I will probably just skip on to the next post. Apologies to all those who prefer txt-spk, and get irritated by my typos etc ! :)

In terms of etiquette, I do wish people asking questions wouldn’t assume that readers will either remember their last posts, or wade back through them (not always easy on a tablet or phone). Either include all relevant information in the post, or better still, summarise it (thyroid condition, when diagnosed, current medication, most recent test results...) in the profile.

TSH110 profile image
TSH110 in reply to helvella

Of course not - what is wrong in asking a question of relevance to your situation to living breathing people on here for a tailored response? Techno speak is not inclusive and we really ought to desist from it wherever possible but I am as bad as the next person....

djb200 profile image
djb200

I think people visiting here are needing answers quickly and have little time or patience to wade through what may appear to be a heap of insurmountable formation that may not even be relevant to their needs.

I'm admin of a support group and the same questions are asked time and time again. But no-one seems to get upset about it. Whomever is about are happy to offer the information required. Usually the last new members are happy to impart the information and support they have learned. It's invariably an organic teaching and learning process. Pointing someone straight to the 'library' can be quite a lonely affair for those wanting human warmth and support after feeling so lost in even getting a thyroid diagnosis in the first place without then trying to learn about it from endless threads. Just saying.

TSH110 profile image
TSH110 in reply to djb200

I totally agree

janey1234 profile image
janey1234

I do, but I wish in the Search option there was the option to see more recent posts first e.g. in date order. That way we can read the most up-to-date advice & tips.

I wonder if people post because it feels more personalised and like having human contact. Being ill and alone in your quest for medical help must be awful. If GPs are hopeless and family don't understand, this site is a lifeline, like having someone to 'talk to who completely understands.

Also, I have a friend who is about to receive her thyroid results which she would like me to post on here. I could probably tell her the answers based on all of the advice on this site but I would prefer her to 'hear' the answers from the experts here rather than from me.

I guess we all come here to be listened to because nobody else is hearing our cries for help.

Long live this awesome group ☺

helvella profile image
helvellaAdministratorThyroid UK in reply to janey1234

There is!

For example, go here:

healthunlocked.com/search/t...

At the top of the list of results, you should be able to see ALL POSTS QUESTIONS - to the right, you should see a dropdown box initially showing Sort by and with the options Newest and Most Relevant when you click on the down arrow.

However, the search facility is woefully inadequate. There has long been a dialogue between admins and HU asking for improvements. HU do seem to realise they are needed - but it is taking a long time to arrive... :-(

janey1234 profile image
janey1234 in reply to helvella

I will have another look helvella to see how I missed that 'sort by' bit. Thank you ☺

helvella profile image
helvellaAdministratorThyroid UK in reply to janey1234

It didn't used to be there. :-) Very easily missed.

janey1234 profile image
janey1234 in reply to helvella

Found it! ☺

cwill profile image
cwill in reply to helvella

It is needed I get really frustrated with the search option.

TSH110 profile image
TSH110 in reply to cwill

It’s utterly tedious, illogical and a huge waste of time

SeasideSusie profile image
SeasideSusieRemembering in reply to helvella

I never knew that helvella I have often been frustrated by the search facility but never noticed that! It will make it a lot easier looking for more recent posts. Thanks for mentioning it.

humanbean profile image
humanbean in reply to janey1234

I had noticed that we could now sort Search results by date, which is a huge improvement over how it used to be.

When they updated the Search I wish they had included the facility to search a particular person's posts and replies.

I have very limited physical and mental energy. Sometimes I can answer a post, but the answer might be complicated. I would like to be able to search my own posts to find something I've written before, so I can copy it. But often I can't find what I want, so I've decided against answering.

Similarly, I might know that a certain member of the forum has posted something I want to look up - say, one of helvella 's research paper posts. But my only option is to look through every post he's written and hope I recognise it when I see it.

I find this restriction ludicrous. HealthUnlocked is for the use of people who are often very ill. Why make life hard for them?

LouiseRoberts profile image
LouiseRoberts in reply to humanbean

We recently asked for that at a meeting with HU, I can't remember the response - will ask again... x

Rapunzel, have you ever considered that new members are not aware of this and the more experienced members should be more empathetic?. Just a thought 🤐

Shelley1954 profile image
Shelley1954

I think, often members especially new ones, just want to communicate with someone who is more experienced with their issues and sometimes they want to just communicate. Searching for an answer online does not do this.

TSH110 profile image
TSH110 in reply to Shelley1954

Exactly

Rockingdog54 profile image
Rockingdog54

How horrid ,i can barely keep my eyes open never mind oh dear

Valarian profile image
Valarian

I can’t see how to get to pinned posts from the (iPad/iPhone) apps, and whether you use an app or a browser, if you enter the site from a daily email, it seems to bypass the screen that shows pinned posts.

I use search myself, but new people especially are often worried, even frightened, and I know from my own experience that hypers tend to be short on patience, so I’m happy to cut them a bit of slack when they are desperate for information. However, I see nothing wrong, with regular posters especially, gently suggesting something like “if you search on......you will find my previous post on this subject’”.

Om289 profile image
Om289

As a new member I have read around the site. However I have probably asked those obvious questions as well. I can only speak for myself but it also helps making contact with this community just to feel like you're not alone. Otherwise i would just have read a whole load of research and ended up feeling just as bad and alone as I did to start with. When your doc isn't the greatest I needed to just say things probably said a million times on here , just to know it's not all in my head. We're all different. Adding links to previous posts is a very kind helpful thing to do for a new and bewildered foggy head like me. Thanks 💜

Treepie profile image
Treepie

Sort of agree,puts a load of repetition on the experts . But some folk first reaction is to panic.

SilverAvocado profile image
SilverAvocado

This just makes me wish we had a proper, bulletin style forum, where the most relevant posts stay at the top for a long time, and its worth going back and posting on an old thread, because then new people will see it. And a decent search facility to go with it.

Its the nature of Health unlocked that within a day or two posts disappear into the ether :( I don't feel as if we are building up a store of knowledge at all, unless you count inside the heads of the people who happen to be here on that day to read it.

TSH110 profile image
TSH110

Why even bother have a forum - it will have all been said before, somewhere...if you can find it...

Surely to demand people spend ages researching using a pretty poor search tool that is almost impossible to locate buried in ones own settings, for something that might have related information that may be of assistance to them, totally defeats the object of a forum, the purpose of which is permitting immediate response to any question a person might have to help them in their journey to good health. A lot of people are very sick with impaired mental ability - I could not even read anymore when I was poorly - and just want a bit of personal support ...not to undertake a research project.

No one is forced to answer a post so what’s the issue?

DippyDame profile image
DippyDame in reply to TSH110

Hear, hear!

Trixie64 profile image
Trixie64 in reply to TSH110

Exactly!

jgelliss profile image
jgelliss in reply to TSH110

TSH110

Your very sensible . Patients in DIRE need , need to have their questions answered with other forum members about their problems right away . We ought to RESECT it . We are all navigating the same journey . Every question is important as is answers . For some of us we have been there once too . We are not ALONE in this JOURNEY.

Search boxes are very helpful and valuable at leisure times .

silverfox7 profile image
silverfox7

I don't mind repeat questions at all. New people are sadly arriving on a regular basis but it gets a bit irksome when several people put same thing on the same post. I prefer just to put a like on things I would have said myself if had read it earlier and I think it also helps newbies to think they should read it carefully as must be important. Sometimes when we feel low or out of sorts repetition can be too much to sort out the important info.

DippyDame profile image
DippyDame

I'm not sure that this is an appropriate message, though I do concede that we are all entitled to our own opinion.

If I had seen this when I joined the forum and when I felt really very ill then I would have beaten a hasty retreat, never to return! What a massive loss that would have been. Only as I became more familiar with the forum did I start to use the search box and read pinned posts - and found them very helpful.

Worried and unwell people join to connect with other people...not with yet another search box! It has nothing to do with that process being, "too difficult" rather, I would suggest, it is their first steps towards gaining valuable information that they can build on as they themselves become better informed....and better able to cope with a lengthy journey to recovery.

Sorry if this is blunt but those words "Incoherent Rage" have (in my opinion) no place on a support forum...and to see them here really upset me!

Rage is a waste of energy and few of us here have that to spare!

I hope you are keeping well

Best...

DD

Cooper27 profile image
Cooper27

Pinned posts don't show if people are browsing on their phones, so I guess that could be something to do with it?

HypoF3XXY profile image
HypoF3XXY

Sometimes people just want another persons answer, so they know someone knows what they are going through. If you go on a post and read only you know you have been there, that does not give the feeling of support and we all know a little support on this journey goes a long way xxx.

Rockingdog54 profile image
Rockingdog54 in reply to HypoF3XXY

I totally agree, I am desperate and tired and need support from another human being in the same boat , had I seen the post on day one I would have legged it,

Xxx

hypercat54 profile image
hypercat54

Many don't know where to look so someone helpful enough to post info sometimes is a very good thing!

Lor7 profile image
Lor7

No I didn’t when I was a newbie, I was in a panick and just rashly asked my questions. Why would anyone search when a diagnosis had just been thrust at them?

Eddie83 profile image
Eddie83

An alternative to remembering the URL for pinned posts, is to type "pinned posts" into the search box. I think I am more likely to remember that.

When they introduce a proper boolean search I'll use it more often.

Sadyspring profile image
Sadyspring

So, this is something I go through, too. It's because of the Hashimoto's, I suspect. I get incredibly irritated by something just like this, or by bad grammar, and then a day or two later, I'm laughing at myself or just wondering why I got so riled up. Hoping you let it go, because it's just not worth the stress on our adrenals -- especially when our thyroids are out of whack. Hardly anything is, which I realize more the older I get.

cwill profile image
cwill

It looks as if people have different expectations of the forum. I really appreciated the fact based nature of this site and it’s clear layout that I found foggy friendly. I did take note of popular posts, and the number of likes a comment had. But I mainly wanted info from people who had experience. A bit of hand holding but I didn’t see this forum as purely support when I joined. Concise info in a clear layout was what I needed. Other sites I had joined were great at support but the information provided was very variable. I really appreciate the scientific underpinning of TUK.

I think that the search facility would be greatly enhanced by the ability to attach more specific labels to our posts, such as adding a label re expectation: looking for support, patient experience, information, science. And a greater number of topics to tag as I am usually only offered a choice of about 5. I have certainly read posts were people have been offered advice that they didn’t want, having expected simply support.

And whilst we are at it let’s revamp TUK website and/or ensure we have clear summary documents edited by admin (a files section) to have detailed documents re diagnosis, treatment, drug and hormone choice, cofactors, how to handle medical professionals etc. We would then have set documents to link to and would not have to add all the info to every post.

I am one of the many that this site has quite literally saved in that I am still here and no longer foggy.

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