Clunky system for this forum - thoughts? - Thyroid UK

Thyroid UK

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Clunky system for this forum - thoughts?

Heyhop profile image
65 Replies

Hi there, what would everyone think if this forum moved on to a different platform, a private Facebook group or a WhatsApp group?

I find this system clunky and not very easy to use.

This forum is a great group but personally, I find it’s format off putting - any thoughts?


65 Replies
Buddy195 profile image

As we have over 130,000 members Heyhop, I don’t think that this would be possible. What issues are you having with posts/ replies that we could help you with?

Heyhop profile image
Heyhop in reply to Buddy195

Hello and thanks for getting back!

It’s just not a very easy system to use and get a full overview with. I get an email alert with the latest message then I have to click on a link that only takes me to that very message.

Compared to a private Facebook group / WhatsApp group I can’t just go onto an app or a page and just scroll down the latest posts / discussions at an easy glance.

I’m part of many forums on both of Facebook and WhatsApp and this is the only group I’m part of that remains on this type of platform.

On Facebook in particular, groups can hold many members, often over 1 million etc, so I don’t see why a private Facebook group would be a problem (even do I appreciate some people might not have Facebook).

I personally find this system dated and not very user friendly.

SlowDragon profile image
SlowDragonAdministrator in reply to Heyhop

If you go to the webpage you get all posts ….and can choose from date order

Or by most recently active

This forum is far, far more user friendly than Facebook

tattybogle profile image
tattybogle in reply to SlowDragon

l usually have it on My Feed / My Hub/ Chat / Alerts

set to

"News Feed"


"Saved Posts"

i like that it shows the first few words of the latest reply to each post , who it is from, and how many minutes ago it was made.

This saves scrolling down posts to find who just added the new reply... have you tried using this setting Heyhop ?

Charlie-Farley profile image
Charlie-FarleyAdministrator in reply to SlowDragon

totally agree it just doesn’t work like Facebook 😉👍 I can say without hesitation, this is a safe platform for the purpose of advocacy I’ve made comments below.

tattybogle profile image

if it went on face book, it would be going there without me. (and i believe quite a few other regular contributors really don't want to play with face book either) .

as for other apps ...personally i'm a luddite .. i still don't have more than a basic understanding of what an app is.

I quite like this format, it works well enough once you've figured it out ( to be fair i use a laptop , so no idea how it is to use on a smaller device)

I don't like the search facility being so naff ,or the fact that i can't go back through my own replies by date , but would have to scroll back through thousands of them to try to find an old reply .. so i'd like if is someone could improve those , but other than that it works for me ..maybe because my IT skills are also a bit 'clunky' lol.

i also suspect that the fact that the forum is currently housed in such large public health data collecting platform as HealthUnlocked , is part of the reason the that the NHS is prepared to link directly to the ThyroidUK forum in some of in their "information for patients" ... that benefit/ credibility would probably be lost if it went somewhere more 'social' based like facebook.

Eeyore100 profile image
Eeyore100 in reply to tattybogle

I'm with you Tatty clunky suits and is quite an apt description of us as a group 🙃

If you contact the Tech team with your improvement requests they do try to make improvements if they possibly can

tattybogle profile image
tattybogle in reply to Eeyore100

No way ..i'm not asking , i'm an Old Testment Luddite ~ i believe that if some I.T. boffin tries to fix/ improve something ...... they'll accidentally F***UP 6 other things that currently work just fine in the process :)

Eeyore100 profile image
Eeyore100 in reply to tattybogle

I thought F***UP was the combined technical word for upgraded and improved? 😂

tattybogle profile image
tattybogle in reply to Eeyore100

oh .... i thought that was "FUBAR" ?

Eeyore100 profile image
Eeyore100 in reply to tattybogle

Am I going to regret asking?.... 😬(grimace)

tattybogle profile image
tattybogle in reply to Eeyore100

Starts with 'f'd up' and ends in 'beyond all recognition'

Eeyore100 profile image
Eeyore100 in reply to tattybogle


Lalatoot profile image
Lalatoot in reply to tattybogle

Oh tatty you won't believe it but there is also a group on facebook called Fubar News!!! It is a public group for sharing news about roads, incidents, weather, events in Aberdeenshire.

Hennerton profile image

Oh no, not for me, thanks. I love the formality of this forum and would hate to see it become an extension of any kind of social network that can become spiteful/unkind. Sad to say, this thyroid business is a serious matter and I like it that way.

Lalatoot profile image

There are already plenty of thyroid forums on facebook. In my opinion they are not as knowledgeable or as wise as this forum. This is the go to forum just here.

Heyhop profile image
Heyhop in reply to Lalatoot

I know there are, unfortunately I agree they’re not as knowledgeable but at lot smoother to follow while sitting scrolling on the sofa on your mobile or on your mobile while on the go

To have this group working smoother would be wonderful! So you can easily get an overview, quickly see old posts, search for old post quickly etc.

Brightness14 profile image

Yes I have a thought. I have been using this forum for over seven years and have regained my health with the help on this site, it's great for information. I am 76 years old and pretty useless with any type of technology but I manage very well.

arTistapple profile image

For me there is something terribly soulless about Facebook et al. I think there might be a true difference (affinity) between using Facebook as a younger person and older people. Facebook I find is not user friendly. It’s bitty and jumps about losing connection and plot. And it has a superficiality about it. No I think we get to the depths right here. As someone said there are Thyroid groups on Facebook already, where perhaps it turns out for some people it’s more effective. Like tattybogle it would go without me and I’d be bereft.

FancyPants54 profile image
FancyPants54 in reply to arTistapple

Facebook is no longer for the young. It hasn't been for a while. People under 35 aren't anywhere near it. They are on Instagram and Tic Tok. So we would loose the broader appeal of this site by going onto FB.

helvella profile image

In my view, there are many reasons to remain here. Here's a list of some:

🔺 I will NOT use facebook. Nor any other Meta platform. There are going to be many others who would also not go there.

🔺 And do you realise that a major factor behind this forum being so well-used is precisely because it is OPEN? Not closed. Not hidden. Not private. Thus much of its content can be found by use of search engines. And you can post links to content here on other platforms - Mastodon, Twitter, etc., knowing the non-members can follow the links.

(You can choose to make your posts private - in which case they are not visible to non-members.)

🔺 And this forum is pretty much advert-free.

🔺 And it makes it easy for people to have an identity entirely separate to their real lives and their existence on other platforms. No-one in the forum knows your email address, your real name, your location - except inasmuch as you choose to reveal them. (And we try to remove email addresses, etc., as quickly as we can.)

🔺 And, to a very large extent, moderation here is in the hands of the Moderation Team. Not some far-flung people who might not even know how to spell "thyroid". I can't remember a time that HealthUnlocked have removed something other than spam, abuse, or in response to issues raised.

🔺 WhatsApp seems to be limited to four devices. I have five that I use - and others might have more.

🔺 Using WhatsApp without a phone is awkward. (Not everyone has a phone. Some don't even have landlines.)

🔺 Many members find that having the other forums available on the same platform is hugely helpful. For example, we see a lot of interchange between Pernicious Anaemia Society and Thyroid UK.

Of course, it's not perfect. Moderators do not have some of the tools other systems offer - like the ability to merge threads, or re-order posts within threads.

But I don't know of a platform I'd prefer to use.

SarahJane1471 profile image
SarahJane1471 in reply to helvella


1tuppence profile image
1tuppence in reply to helvella

Spot on. Thank you.

SeasideSusie profile image

What about those of us who don't use, and have no inclination to use, Facebook or What's App? Many of the members over a certain age don't use those facilities and they are the ones with many many years of experience of thyroid disease from whom much can be learned. Are you happy for them to be excluded?

This platform is provided by HealthUnlocked free of charge to charities. It may not be as slick as some others but it does the job at no cost to ThyroidUK.

You have been a member for 4 months, some of us have been members since the forum started well over 10 years ago. It's just a case of getting used to how this platform works.

Compared to a private Facebook group / WhatsApp group I can’t just go onto an app or a page and just scroll down the latest posts / discussions at an easy glance.

Yes you can, SlowDragon has pointed out how to do this in her reply.

If you have a problem with the technical side of the forum then contact HealthUnlocked for help or to make suggestions for improvement:

helvella profile image

To pick an example outside the thyroid world - on purpose as I am not trying to discuss the issue itself but the integrity.

In Pernicious Anaemia Society, there is a steady stream of members who have been told that if they are on B12 injections, they MUST take 5 milligrams of folic acid every day.

This appears to be a stock answer on a closed/private facebook forum.

Unfortunately, that much folic acid can make people very unwell - if they don't need it. And there is no evidence that extra folic acid (nor even folates) is needed solely because someone is having B12 injections.

(Sufficient folate/folic acid is needed - just as it is for all of us.)

Those who challenge this dogma report that they are then blocked from the forum. There is no way of correcting this.

At least here, we can have a discussion. Even if the parties involved never actually agree!

Charlie-Farley profile image

I couldn’t disagree more Heyhop 😱

I actually raised serious concerns about advocacy on Facebook the other day with a group. A young woman had posted that she ‘had symptoms and could anyone else tell her what their symptoms were like…read more’

Was pretty clear from all of the previous comments. Nobody had bothered to click on the ‘read more’ bit.

I did

If the others hadn’t been languidly scrolling, they might have bothered to notice that this girl was pregnant, Had T3 removed and no increase in T4. She was in desperate need of medical attention.

I was horrified, but I understand this is a shortcoming of Facebook and the mentality that we fall into when we use it. Skim reading seems to be a particularly bad outcome of Facebook interactions and you can frequently see people arguing because they haven’t read each other’s comments properly.

It has some benefits for campaigning and sharing information, but not for advocacy. I also think these groups if they reach a certain capacity will not be able to function effectively.

This platform provides many safeguards above and beyond that which the admins bring to the site.

I replied to the girl and also requested people actually read the post before commenting, but I doubt it will make even the slightest impact. Suffice to say I have withdrawn from the group as I do not feel I want to contribute to something so potentially dangerous.

Had this young lady fallen upon healthunlocked the help would’ve been far superior.

Lalatoot profile image
Lalatoot in reply to Charlie-Farley

Exactly! Point well made. Here we discuss openly and can usually back up our suggestions with evidence. From what I have seen of the facebook sites they are generally neither well informed nor rigorous.

humanbean profile image

The one thing that I dislike - and I think it is a bug - is that I get an alert to someone's response or like to one of my posts but the system doesn't go to the response or liked message when I click on the alert. It just stays at the top of the thread.

I have found that if I refresh the page I will be shown the response I was alerted to. But that shouldn't be necessary, and in fact there was a time when I didn't have to do that.

But other than that quibble, I wouldn't want to move to Facebook or any other social media. I did have a Facebook account until about 10 or more years ago, but found it so depressing that I decided to delete it completely.

helvella profile image
helvellaAdministrator in reply to humanbean

Most certainly is a bug.

Have you reported it?

I did - ages ago. Would probably help to send a few more reports in - folks! That is, everyone affected, not just humanbean!

Email HealthUnlocked support here:

Trying not to make assumptions, that is, if you have access to email!

tattybogle profile image
tattybogle in reply to humanbean

i get that issue too ,it used to go straight there, now i have to 'refresh'.

I've just done as helvella suggested and let them know via Email. ( having just about overcome my aversion to writing emails )

Eeyore100 profile image
Eeyore100 in reply to tattybogle

Oh... You've change!... you're feeling braver... did you go put your BIG Brave Pants on 🤣🤣 (OTFL)

Eeyore100 profile image
Eeyore100 in reply to tattybogle

I didn't know the refresh thing took you to the reply... Result!

Eeyore100 profile image
Eeyore100 in reply to humanbean

I reported this issue a couple of months ago and it was resolved for a time but seems to have reverted to top of the thread 😕

SlowDragon profile image


If you mention possibility of fibro being undiagnosed hypothyroid on fibromyalgia forum…’s virtually instant ban by admin

They seem paranoid we might pinch their members

pennyannie profile image

Hello Heyhop

I joined of Improve Thyroid Treatment - ITT Facebook group as originally I thought it was to mainly campaign for the reinstatement of T3 - Liothyronine country wide and try and to try and get the Nice Guidelines acknowledged and implemented by the CCGs/ICBs/ or whoever it is now controlling the finances and playing Russian Roulette with our health and well being.

I find it is not geared for detailed explanations as on here we look at the whole patient thyroid journey and offer constructive thoughts throughout that journey, including optimising vitamins and minerals and share information on all the treatment options whether that be Big Pharma's T3 and T4 or that of taking Natural Desiccated Thyroid.

My replies on here, as are many others quite long and detailed with links to official research papers and I can't see that sitting well in these bubbles of comments that are rarely more than a couple of sentences and with some ITT members suggesting people arrange the necessary blood tests and then go to HU / Thyroid Uk for an explanation and suggestions as to a way forward to better health.

Thyroid hormones are not a quick fix and believe the pace of here matches most peoples recovery.

You can always look back at everything you have ever written or replied to by pressing the " More " button top right on this screen and go to your profile page and similarly if you want to read another persons profile simply press on the icon alongside their name in any post and at least know and understand where they are coming from.

The Tortoise and the hare story comes to mind - they are both in the same race - wanting the same end goal - and just going about it slightly differently.

helvella profile image
helvellaAdministrator in reply to pennyannie

ITT do lots of good things.

I'd be so happy if they had a website or some other presence than facebook. They are aware but, of course, these things all depend on volunteers and some source of income.

wellness1 profile image
wellness1 in reply to helvella

Agree. I also wish Thyroid Patients Canada discussion didn't take place on Facebook. At least Tania Smith has a website and her blog posts are easy to access independent of social media.

helvella profile image
helvellaAdministrator in reply to wellness1

My view completely.

Star13 profile image

Facebook - Oh please Nooo!! 😩

Eeyore100 profile image

Hey, Heyhop

We still love you but I think it's a big fat NO 🤗

Perhaps think 'Retro' and then clunky becomes cool 😀

FancyPants54 profile image

I am not a technology Luddite. I make my living from the Internet, I have worked in software firms before that and I'm married to an Internet genius.

This forum is a little clunky in places, the search facility is rubbish and needs improving. Sometimes I click on an alert and it takes me to the actual reply and others just drops me at the top of the thread which is not helpful. But apart from those things I think this is a good all round platform that won't alienate anyone whatever their age.

I use it on my laptop, phone and iPad. All fine. The idea that FB or WhatsApp could improve on this is not a sound one in my opinion. FB is flaky and only now appeals to middle aged and older demographics. WhatsApp isn't really built for such large group numbers. There are years and years worth of data on this web site. That's valuable for all of us.

Heyhop I understand where you are coming from. However, having lived in many different health/thyroid forums for the past 6 years the benefit of this forum is that you are (largely) allowed to have your own thoughts and opinions. Censorship doesn’t happen too much here, which I believe allows for much more and much quicker learning. For instance, on the Stop The Thyroid Madness Fb group “thyroid and adrenals” that has about 70,000 members you are instantly banned for saying anything positive about endocrinologists. In Paul Robinson’s group people clamour for his opinion and treat it as gospel, when it isn’t. In this open setting there isn’t a strict hierarchy, or a dogma which I think benefits everyone a lot. Admins exist to help, but no one bats an eye if you have a difference of opinion with an admin on B12 shots or what have you. I think if we moved into a FB forum etc., this democratic, mutually respectful vibe might get lost.

On the other hand the search function on this platform is appalling 😂🤭

geordiemiss profile image

Hiya. Just to say that if that happens then I would have to leave, which would be a shame as I have only just joined. I have no social media accounts and do not wish to open one. I am finding out lots of information, which is fantastic, and I would rather it came from a secure site like this than maybe pick up misinformation from the internet!

Imaaan profile image

My thoughts are:

1. Search engine needs a revamp

2. Sherlock needs to answer why my saved posts disappear ???

tattybogle profile image
tattybogle in reply to Imaaan

2) me too ... can't find sherlock .... but have asked Mrs Hudson instead ..she's wondering if there is a limit to how many saved posts it can hold .. and perhaps beyond that limit, if you add a new one it dumps the one from the bottom of the list ..( and sometimes put's it back later if you remove one .)

i've got 30 saved ,, but some of the first one's i ever saved have now gone from the bottom of my saved list even though those posts still exist on the forum ..(i think) many have you got saved Imaaan ?.... i'm just wonderin if there is a limit of 30.

Imaaan profile image
Imaaan in reply to tattybogle

I've come to the conclusion that I must like you enough to have gone counting ;)

Drum roll....and the results are 30 posts saved. Why are only 30 allowed to be saved? There must be a method the madness .

I suppose we must go down the Alice n Wonderland rabbit hole and ask the mad hatter.

Jokes aside, its annoying as heck since there is a reason why I saved the posts in the first place.

You're on to something when you say that its dumps the old to make room for the new but I dont think it ever brings back the old. I spent a day searching for an old post months ago and couldn't find it 😡 What a waste my time

tattybogle profile image
tattybogle in reply to Imaaan

right .. ok now we know it's 30 ...i've been contemplating trying this for some time ....... im gonna dump some recent ones and see if i can make an earlier one that remember ***re-appear***

I may be some time.......

Imaaan profile image
Imaaan in reply to tattybogle

Oooo I look forward to your experiment and thank you in advance for signing up to do it.

tattybogle profile image
tattybogle in reply to Imaaan

success !

if you have the maximum 30 saved posts showing on you list , and are wondering where the previous saved posts disappeared to CAN make them re-appear :

Go onto any post showing on the saved list , and 'unsave' it .

.. and as if by magic ..

Voila ...

when you go back to saved posts, your list will still have 30 posts showing , but number 30 will now be one that you had saved previously that had curiously disappeared.

( BEFORE doing this , find one of those stick shaped things with graphite in the middle , and a bit of that flat white stuff made from recycled trees .. and write down the title of any ones you choose to 'unsave', ( along with who posted it ) , so you can find them again easily by looking down posts on that persons profile page/ or using the crappy search function to look for the title if they have left and are now called 'hidden' ).

Based on this fantabulous discovery~ i'm going to re-instate the ancient skill of "keeping a list in a notebook" to 'save' any interesting posts in future ... as i don't quite trust HU not to hide them from me .

Imaaan profile image
Imaaan in reply to tattybogle

Excellent! I cried. "Elementary," said Sherlock. Thanks for swooping in like superwoman and saving the day.

helvella profile image
helvellaAdministrator in reply to Imaaan

Quite often you get better results from standard search engines rather than the built-in HealthUnlocked one.

But that is a more difficult to use approach.

Imaaan profile image
Imaaan in reply to helvella

Why would it be difficult to use?

helvella profile image
helvellaAdministrator in reply to Imaaan

For example:

You need to specify the site - so you add

You need to add the forum - so you add "thyroiduk" (including the quotes).

You also need whatever you are searching for - so you might add hypothyroidism.

You search using Google. And get told you probably mean "thyroid uk".

You actually search using: "thyroiduk" hypothyroidism

And still you have to choose further options such as a date/time window and what order to display them in.

Now, for whatever reason, instead of Google you decide to use DuckDuckGo, or Bing, or Ecosia or some other search engine. And find that the way of formatting your search query is different...

You might be lucky with a much simpler search but to get the best results you need to refine your search terms.

Imaaan profile image
Imaaan in reply to helvella

Complicated indeed and difficult to navigate with a brain fog brain. Thanks for the explanation

crabapple profile image

Sorry you are having trouble with the format. The search facility is pants.

I don't want to be on Facebook and and cannot imagine how this would work on WhatsApp.

When I first started looking for information this site was (and still is) amazing. You don't need to join to see lots of information (and opinions.) It may pee off some people but we expect stuff backed up by science. Nobody tells you we've got all the answers and everyone else is wrong and yes there are places with that outlook. The mods (and others) collate answers and papers and have turned this into a fount of knowledge.

It's a very safe place and when you can't think straight that's really important.

jrbarnes profile image

This is the best thyroid forum out there and I don't want to use social media platforms. The ones on Facebook are terrible. Lots of misinformation, poorly moderated, and little traffic.

Sleepman profile image


I have a car and it had a great forum with repair and loads of other info.

Forum moved to facebook and they lost all the archive !!

The archive on here savee peoples lives and is much more important than mending a car...

I agree search on here is poor, I search with "healthunlocked" "thyroid" and then what I want to look for in google instead of inside the site search.

Keep up the good work.

Regenallotment profile image

oh no…. As forums go this is outstanding.

The only similar platform ive come across is Discord, allows for channel discussions and has and admins etc. we use it for a local charity to coordinate volunteers, but it wouldn’t be searchable via Google like Healthunlocked is, the beauty of this forum is how easy it is to find when you need it. 🌱

Zephyrbear profile image

I use this forum across all my devices (iMac, iPad, and iPhone) and have no problems at all navigating it. If it were to move to Facebook it would do so without me as the endless bloody adverts drive me insane and I don’t even want to go anywhere near What’s App!

Clunky is as clunky does, but this forum has been my mainstay for information about my thyroid condition since I first found it in the early 2000s (when there were only around 5000 members) and it has helped me enormously in that time and I’d like to think my occasional contributions have helped others too.

Ellie-Louise profile image

I have tried more than once to get a friend to join us here, she won’t because she prefers her fb thyroid group…and that is the reason she still knows nothing about her condition!

tattybogle profile image
tattybogle in reply to Ellie-Louise

There's a classic example of some of the dodgy advice out there , in a recent post here : scared-with-my-lab-levels-i-m-told-i-m-in-danger-but-i-don-t-feel-horrible-looking-for-advice-i-m-confused-and-anxious

Very quickly corrected by coming here ... clunky or not . this forum is definitely safer than a lot of 'other' online thyroid spaces, and we quite often have to clean up the mess they made of people doses.

There was an even worse one recently too , with some properly dangerous advice given as gospel/ fact .... "but i was told by everyone on FB Thyroid forum that everyone needs.... " , but can't find it now.

Ellie-Louise profile image
Ellie-Louise in reply to tattybogle


CherryLiqueurs profile image

This forum is a breath of fresh air compared to FB. The news feed here shows me what's going on in real time, unlike FB which frequently offers me old posts interspersed with irrelevant adverts.

milkwoman profile image

No system is perfect that’s for sure but I find the people, information and discussions here to be head & shoulders above anything FB or WhatsApp could ever provide.

The moderators are amazing (thank you for all the work you do!) I have learned so much and have tried my best to offer as much help as I can in return.

No ads, no trolls (or if there are, they are typically reported and removed quickly), a sense of true community with sharing of ideas, facts and solutions.

So I guess what I’m saying is, nope. No need to fix or change what is working just fine imho.

thyroidquest profile image

I'm happy with things as they are 👍

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