Thyroid UK wants to run a telephone helpline (t... - Thyroid UK

Thyroid UK

124,838 members146,107 posts

Thyroid UK wants to run a telephone helpline (trained by us). How often do you think you would use a Thyroid UK telephone helpline?

lynmynott profile imagelynmynottPartner525 Voters

Please select all that apply:

186 Replies

Never

Never

I’m not sure I would use it, for many of the reasons outlined under the previous vote.

Until the medical profession is better aware of the challenges we face and the ways our conditions are best managed and symptoms alleviated, I would not have faith in medical professionals answering this phone line.

And I can’t see how else it could be run.

Probably after I’d had a disagreement with my GP over my very low TSH.

Hi, I hope you don't mind me asking. However, I have also had a disagreement with my GP over my low TSH. I am having to lower my levothyroxine levels as a result of TSH being almost untraceable. However, my private consultant who has advised I revert back to metavive, says ignore TSH levels and focus more on T3 and T4 levels. Gosh, it's all so confusing! Are you told to lower your dose due to low TSH?

waveylines profile image
waveylines in reply to Angie33

Ure private consultant is correct....ure GP doesn't have the knowledge so has advised you badly. Stick to what ure consultant said.

I’m told to lower my dose every time I have a blood test. To date I’ve been able to argue my corner. I’m always told NHS don’t do T3 but I trot out the arguments I’ve learned from this ThyroidUK site. I’m 71 and have suffered from hypothyroidism for more than 40 years. At one point I was reduced from 200 Thyroxine to 150 in one fell swoop. At that time I knew very little about it. I had 4 teenagers then and my memory of events is very hazy. My, now grown up, children still talk to me though!

Slowly, over the years there has been more and more written about thyroid disease and there is a lot of information on the internet so I would advise you to read as much as you can and then you can argue your side well informed. Sometimes much better than the GPs! If they query what I’ve said, I tell them to look it up.

I’m so glad they still talk to you but sympathise that you went through that. I think we are similar and I feel my kids lives were so affected by my thyroid issues. Just wanted to say I’m sorry for you (and me! Lol) x.

surf8111 profile image
surf8111 in reply to Angie33

yes agree absolutely ...curious why would you listen to your dr when you are lucky enough to have a consultant

Angie33 profile image
Angie33 in reply to surf8111

My consultant isn't qualified as such. She is a GP who focuses on ME. She only advises me. I had try make sense of the conflicting advice from her and my GP. Neither I agreed with. Consultant 'ignore your TSH levels being 0.01' !! I finally got saw an endocrinologist! I was very cynical at first but she was awesome!! Finally!! Someone who agrees with me... so... keep with levothyroxine but lower my dose to 75mg and she will write to my GP so she can prescribe me T3 too. My body isn't converting T3 from T4. Supposedly GP's not always willing to do so, maybe due to cost, not sure. If my GP won't. My endocrinologist will prescribe T3 so I can combine it with levothyroxine. What a journey eh....

Angie33 profile image
Angie33 in reply to Angie33

apologies for bad english, I wrote this quickly whilst in a boring online meeting :-)

Basically it is dangerous to ignore your TSH levels. My first consultant said to ignore the levels as this will result in lowering your T3 and T4 - not great for energy levels.

So, new way forward, mixing levothyroxine with T3. T3 used to come from Germany but since we left the EU it is harder to get and more expensive - grrrrr hopefully this will all work out! I hope you are getting somewhere with your thyroid. It's a battle and a very confusing one at that.

I would tend not to use one at all Lyn, because I know how busy we all are and you would need staff to man the phones.

The Forum is very quick, practically a few minutes after I have posted a question someone comes along to answer it and you get lots of people involved in the thread. How did anyone cope without the Internet?

Never

Unlikely to use.

If they were as good as the people on here I would use them but if they are like most GPs then I would never use it.

Every now and again, when a new issue crops up.

Sorry, but I can’t see a time when I would use a helpline like that… I prefer to use the forum.

Perhaps some GPs may benefit from using it as some are poorly trained in thyroid issues

Angie33 profile image
Angie33 in reply to Warwickian

oh how true!

You are so right! I was talking to a lady diagnosed with Cfs today who has been gaslighted into thinking it has nothing to do with her underactive thyroid! Unbelievable! Apparently it's something completely unrelated even though there's nothing else wrong with her

never - you must be joking - tell 'doctors' to do their job please.

Probably never - whineould be on the other end? If its a health care professional it would be a waste of time. Experts on this group Are far more knowledgeable

Never, a pointless exercise

I agree with BrynGlas' answer😊

I did not even know there was a help line.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Soaping

There isn't. These polls are to garner members' opinions on whether or not they would like a telephone helpline to be made available.

Never, a pointless exercise.

Unlikely to use it

As others have commented, the staff on the line would need to be as knowledgeable as people on this forum, most GPs are simply not fully au fait with all of the nuances of this condition.

I would not use it..service so efficient as it is

I would probably only use the phone help option if I felt really confused and depressed about the state of my health: in other words, in an emergency.

If I was struggling to find information or needed some specific assistance.

When I was first diagnosed & trying different meds (T3 & ndt), I would have used a phone line weekly at least, it would have helped so much. Now I'm stable I probably wouldnt use it more than once a year.

Never, no point.

Can't possibly answer that without knowing the quality of the service on offer.

And there should be an option to say 'never'.

Geogeor profile image
Geogeor in reply to StitchFairy

Did you write “other” in the poll above?!

Never...system excellent as it is

Not needed. So far my gp has been great. This forum helps me with enough information. The forum also gives differing opinions, so many opinions and voices give me a better picture. Also other people’s questions help me.

Never .. how are you Lyn ? You helped me years ago and put me in touch with Ria xxxx

As long as proper advice like on here, not the crap that the GP etc tells you!

Never. I’d want to know that whoever I was speaking to was medically qualified.

DippyDame profile image
DippyDame in reply to Horsey07

Agree, but...

In thyroid disease terms " medically qualified" doesn't necessarily equate to " medically well informed". If it did, this amazing forum probably wouldn't exist and we would not now be discussing a telephone help line!

waveylines profile image
waveylines in reply to DippyDame

I definately wouldn't want a doctor on the other end of a helpline! Its because of their inability to diagnose and treat effectively we r on here! I would want well seasoned "travellers"on the line who can explain especially to newbies the intricacies of the thyroid, what the tests mean etc, and to be able to make suggestions of what steps to take next.....sometime people need a chat to talk things through & reassurance too. We don't need a medical.practioner to do that.....most couldnt in any case as they know so little! 🤣😂

Good morning and hope you are well.

It would depend on what quality of help was at the other end of that phone line! If it were managed by well informed & qualified excellent thyroid medical professionals then I would make use when I had issues of concern & help.

Never. My GP & endocrinologist have been great. My surgery didn't go quite so well and I had a few problem with the after care from surgeon, but other doctors were more than helpful in his place.

Never- or until they are better informed and educated about thyroid health

greygoose profile image
greygoose in reply to Nadine70

Who 'they'? We don't even know who would be on the other end of the line. I take it you're assuming it would be a doctor. But I think if it were, no-one would use it! At least, not twice. :)

Nadine70 profile image
Nadine70 in reply to greygoose

Absolutely, I had assumed it would be a doctor, and therefore definitely wouldn’t use it if it were. I’d be dead if I’d listened to my gp! Thank goodness for all the support I’ve had on this site 😊

greygoose profile image
greygoose in reply to Nadine70

Oh, I agree with you! I'd either be dead or a vegetable puree by now, if I'd just listened to my doctors. And I've seen quite a few of them!

I don't think it's likely, though, it would be a doctor because that would be very expensive. I can't imagine TUK employing several doctors to man a help-line, it would be far too expensive. But, who knows? We don't! lol

Nadine70 profile image
Nadine70 in reply to greygoose

If it was a fellow sufferer I’d be happy to use it but then they aren’t allowed to give medical advice so who knows?! Aargh lol 😂

Essexlil profile image
Essexlil in reply to greygoose

Hi, I’m also a member of British Sjogrens Association. They have a helpline, manned by women who are fellow sufferers and are very knowledgeable, they do it voluntarily from home and I’ve phoned them quite often. Still very comforting to be able to speak to someone who is able to give advice and help. I do appreciate the help you all give on the forum and find it very valuable but sometimes it’s helpful to have a discussion

greygoose profile image
greygoose in reply to Essexlil

Well, that is always a possibility. The point I'm making here is that we just don't know. We're being asked to vote on something we really have no information about, which is a bit of a nonsense, really. :)

Probably never.

Never, for reasons given in the first poll.

Unlikely

Probably never

It would depend on who was staffing the phone line. No faith in supposedly trained clinicians.

It would be really helpful to have advice r

unlikely to use it at all,. but very comforting knowing it would be there

When I wasn’t able to find the information I needed about my thyroid health and needed some advice. I’m surprised at the huge amount of totally negative feedback surely it is good to have some choice in accessing valuable information - what about those who aren’t internet savvy, thyroid disorder tends to affect older women perhaps some would like to talk to another human being about their situation. We could be asking the wrong people ie us internet savvy forum users who like typing! A telephone help line could reach people who are not accessing Thyroid U.K. because forums are not their thing or they are not computer literate. I wish people would be more open minded instead of having the I don’t want it so no one should have it attitude. But to be fair they are answering the question asked but comments like “useless” seem a tad judgemental to me and I still want to raise this point even if it is an aside.

DippyDame profile image
DippyDame in reply to TSH110

You make a fair point TSH110 , but we were asked direct personal questions and in my case my responses/comments reflected that. If someone did say "useless" then I guess that's how they see the value of a help line to them....not necessarily to everyone.

The result of the poll per se will determine the outcome....

In essence, it's a poll but we opened it up and started a discussion and there in, I guess, lies any misunderstanding

The option, "Other" may have been better replaced with " Don't know" and/or "Never".

in reply to TSH110

Typing causes me alot of pain so I rarely use the forum for that reason.

Being completely fobbed off by endo and GP's around my private test results showing hashimotos.

I would appreciate a phone line.

fatbum profile image
fatbum in reply to TSH110

Very good points made here. But I personally feel there's a huge amount of undiagnosed genetic hypothyroid babies, children, teenagers and its not mainly older people. I don't understand why the medical profession ask your family history and don't act on other members of your family having the exact same symptoms as yourself and leaving them undiagnosed. Especially when their blood results show abnormal and their told we are not going to treat you.

TSH110 profile image
TSH110 in reply to fatbum

Statistically hypothyroidism is most common in middle aged women. I don’t doubt it affects other groups, yet it goes undetected. I am sure my symptoms first started to appear in my 20’s but I was not diagnosed until my 50’s. Perhaps it does start up earlier in life but is not diagnosed until much later. I was close to dying before I got a diagnosis despite being in my 50’s with a strong family history of thyroid disorder and a plethora of symptoms. I hope one day decent research will shed more light on it.

Juleanna profile image
Juleanna in reply to TSH110

Yes good point TSH110 . Assuming the phone line is in addition to this amazing forum, talking to a human contact could be a life changer for anyone unable to access the forum/internet.(Maybe the phone line would be staffed by some of the brilliant contributers on this forum?) Then it could benefit so many more suffering folk who have been fobbed off by GPs, and don't know where to turn for help.

surf8111 profile image
surf8111 in reply to TSH110

I think what people are talking about is the fact that the person answering is an unknown. Re age thyroid is mostly started/ noted at puberty. If they are not comp literate they wouldn't be on here to get access. But..it is just being asked. not decided. I. personally, could see the value in talking to a human voice re feelings about an individual situation but would have trust issues re reliability of information. For expansion it could be extended 1. this forum 2. emotional 3. diet/nutrition web sites ?

Never

I'd use it whenever I couldn't find answers on the forum

So far most of my questions have been answered very satisfactorily so I don't envisage using it often but there have been occasions when although a question has been answered, clarification on details is required or the clearing up of a misunderstanding. In the latter instance, often, a few spoken words can be more informative than a lengthy written explanation where even then, further clarification is needed

It’s really hard to say. When I was first diagnosed I would have called a lot - weekly perhaps in the first few months. Then I would have called more sporadically but especially when my symptoms got worse and Docs didn’t seem to have answers or sometime even care.

Hi. I am really happy with how the system works now and would be unlikely to use a phone line. Thank you for giving us all a chance to comment

It’s difficult to answer this without knowing who would be answering the phone. If GPs then I don’t think I would ever use it. What would be the point? Any information I need is on the internet or helpful people on the forum can answer a question.

I wasn’t aware that I could phone a help line

greygoose profile image
greygoose in reply to purple64

You can't at the moment. This is just a survey to find out if it would be worth setting up. :)

Probably never as my GP is receptive to my ideas :)

Never, in a conversation you forget things on the website you can go back to the information and reread it and so get better understanding

My GP is very helpful with blood results and always sends a copy to me. I would use the Thyroid phone if I had urgent need, though.

Given the response from GPs and Endocrinologists, always stating that my bloods are fine/normal, no matter what my symptoms are or how rough I feel, I probably would not bother with a telephone helpline as it would likely be more of the same.

I would probably use in emergency but most likely would email otherwise.

As many others have already said I probably would not use a telephone service but it may be useful for others,

I think the forum excellent, allows for wide coverage and helpful to get various opinions on an issue. I think maybe a telephone line might be helpful to give general basic information to anyone newly diagnosed.

Never

never

Never

All the advice on here is so prompt and informative and can be referred back to if need be especially if you have brain fog.I think maybe we don’t need it. It would be different if replies took longer but they don’t. The only reason I can think it would be useful is if someone needs help from a recent diagnosis if they are struggling being visually impaired and find difficulty using the site. Though I guess they may receive help from others. Also as some have mentioned, the person on the phone would need to be as highly knowledgeable as the people on this forum, not just an ill educated gp.

There was a point, a few months after diagnosis, when it suddenly came to me that my endo had no idea what she was talking about, that I would have seen it as a life-raft to cling onto. As well as being new to hypothyroidism, I was new to the internet and didn't really know how to use it - I've told this story as part of my 'life story' on my profile. :)

But, thing is, how would I even have known it existed? And, once I got to grips with internet, I would quickly have out-grown any sort of help-line in favour of on-line forums, and the wealth of information to be found on internet.

It's true that not everyone has access to internet, or - like me in those days - knows how to use it to their best advantage - but... There are so very many buts, which I think should have been cleared up before ever embarking on these polls.

waveylines profile image
waveylines in reply to greygoose

But dont u think diversity is a good idea as there are people out there who cannot ot do not access the Internet? ....a free phone line would be a god send for them as well. We can research to our hearts contentment on the net.....but not all can. I know the poll referenced us personally and that is probably a failing of it cos we ARE online so it could be missing a whole cohort of people.

greygoose profile image
greygoose in reply to waveylines

Where did I say that diversity wasn't a good thing? I don't think I mentioned diversity.

As to whether or not a help-line would be a god-send to anyone, we come back to the same questions of:

Depends who's ansering the questions

and

How would they find out about it if they didn't have access to internet. Neither of which has been answered.

waveylines profile image
waveylines in reply to greygoose

You are right on both counts Greygoose. Apologies. 😊 And more to the point this is a poll with views sought so I should recognise & respect that. Thanks.

greygoose profile image
greygoose in reply to waveylines

You're welcome. :)

TSH110 profile image
TSH110 in reply to greygoose

I think such things as fliers and printed info sheet still exist. It would be a matter of producing one with the help line number clearly displayed and a targeted distribution - not so easy now GP telephone consultations are the norm not visiting the surgery. I was given a leaflet about BTA (wish it had been TUK! That could have saved me a lot of unnecessary suffering) at my final endocrinology appointment, so there must be some sort of NHS info distribution system for those with thyroid disorders under the care of an endocrinologist. And what about Radio or TV ads? And that really important one : word of mouth. The internet is not the only way to reach people.

greygoose profile image
greygoose in reply to TSH110

Certainly not the only way, I'm well aware of that. But it's the cheapest. Printing leaflets and distributing them, placing ads on radio and TV, it all costs money. Would TUK be able to afford that? And, if not...

TSH110 profile image
TSH110 in reply to greygoose

Yeah I am sure running a help line and publicising it as widely as possible will have quite a cost implication.

Is it worth it? It depends on who we might not be reaching (I suspect it could be a significant number given how rubbish all aspects of diagnosis and treatment seem to be, with much deterioration - in what was already poor - in recent years in U.K. I was very internet savvy but it took me nearly three years to find the Thyroid U.K. forum) and if it’s a considerable number, how effective a helpline would be in reaching them and providing them with support. So many unknowns but if other similar organisations run good helplines at least there are decent models out there to emulate, whose benefits must be evaluated / monitored in some way and whose cost must be known and covered by these charities. I presume it must be feasible for Thyroid U.K. to run one, if these other health support organisations manage to provide this service.

surf8111 profile image
surf8111 in reply to TSH110

You have such passionate energy why dont you use it to make the NHS teach and treat Thyroid Disease. That is my angst. If they don't, they will not survive. I stopped doing statistics about seven years ago, then over 400,000.00 people died every year due to untreated Thyroid Disease. ( Covid will force them)

TSH110 profile image
TSH110 in reply to surf8111

OMG that’s a lot of people. I bet it’s not even the full story either. I think three of us on here that I know of nearly didn’t pull through because of very late diagnosis and treatment, and that’s in the sixth (or whatever the U.K. ranking has dropped to now) richest nation in the world.

I do try my best - I told a newly qualified doctor about NDT why blood tests must be read differently when on it and all about DIO2 polymorphism for poor T4 to T3 conversion she listened intently. But how do we reach the brainwashed medics and provoke them into questioning the simplistic rubbish they have been taught about thyroid disease? I have written to my MP outlining all the problems I had even getting diagnosis, then the treatment leaving me poorly and lack of choice of medications which I need to be well, forcing me to rely on life saving drugs I need for life, via the internet, he was sympathetic.

If there was a vehicle to do this I would gladly hop on it and shake up NHS’s woeful service to those with thyroid disorder. I hope that the work of diogenes et al will eventually cause a complete rethink and sea change in the way it is diagnosed and treated, with us at the centre, not an ill conceived out of date practice that’s some pet project of an endocrinologist who rams it down everyone’s throat to the exclusion of any other based on modern research (and no so modern research)both metaphorically and physically, when it really ought to be binned. It is keeping us ill and killing us.

I would most definitely use.

Following my conversations with PAS they were quick to answer my calls. Sometimes I just need to ask questions inorder to clarify information. That's my learning style.

Also a post can be open to misinterpretation and misunderstanding. You become overwhelmed by all the new information when you are struggling to manage on a day to day basis. Having a friendly voice at the end of a telephone is so helpful and can alleviate some of your worries.

I wouldn’t use a telephone helpline now. I might have years ago.

Never

I think the benefit would be a one to one conversation which a helpline offers . Some people may need the reassurance and information from a peer on a more personal level.

These days probably not at all, but in the early days of my illness probably every few months or so. I'm quite happy finding any information I need online, but I'm sure many people would find talking to someone on the telephone very useful and reassuring.

Hi Lynn , having read the other post about this 2nd poll . i now understand more about what you're proposing , and why there is a need for it .

healthunlocked.com/thyroidu....

I think perhaps a lot of people haven't yet read that other post .. and therefore are still not clear who they would be talking to , or how they would be trained, or why you need a help line to help manage TUK's workload of phonecalls.

Perhaps it would help to add/link that information to this post so people see it before they answer this poll ... i voted 'no' to the other one .. but had i known more about what was proposed and why, i wouldn't have voted No .. i only saw your other post about it after i'd voted.

I personally wouldn't use a help line nowadays , but i may have done so earlier in my journey when i was recently diagnosed , and even now i found the internet/forum was a very daunting thing for me to join up to /write public questions on.

So i can see the need for a help line, and can see why using an established outside organisation and giving their call handlers additional thyroid training might be the most pragmatic way to do it .

never

Never, until UK doctors are educated in Thyroid Health.

When first diagnosed I'd have loved to be able to talk to someone several times to try to really understand the condition but probably not after that

I’d probably use it if I felt it was quite urgent and not getting anywhere through the NHS. People can get very down when trying to fight their corner with this underfunded disease. It might be good at times to chat with someone who understands.

TSH110 profile image
TSH110 in reply to McPammy

My biggest help when I was going through the horrors of being optimised was chatting with a lady in the park who had been diagnosed with Graves at just 23 - her story was utterly heart breaking - kids yelled abuse at her in the street because she was so thin and her eyes were bulging she had absolutely no idea what was wrong with her and anti thyroid drugs did nothing to quell it. She thought she was going to die of it, I think she had to have several RAI treatments before it was got under control but then she had the horrors of hypothyroidism to deal with and I presume it was awful for her eyes as she already had TED. I no longer felt so utterly alone struggling with it and no one understanding what I was going through. Talking with the right person can be a great solace and put a completely new perspective on things. I thank that lady for her compassion. I think a telephone helpline is a very good idea

On the forum it is easy to discern the mavens from the well meaning. Admins can correct or remove dodgy stuff or introduce a balancing view. I am concerned that with the best will in the world, and some training, you only really get one opinion on a helpline. It might work better for empathy and emotional support than factual stuff. It is all down to one person on one call. I have suffered on some helplines with self-publicists who are no help at all.

TSH110 profile image
TSH110 in reply to paradime

They should not have been employed in that capacity. It’s got to be properly designed and administered with well trained, empathetic staff, who have the facts at their fingertips. You can design it to give only one opinion but if it’s a true help line all available options should be covered.

I can’t imagine Thyroid U.K. would want to be associated with anything of poor quality, this is a highly trusted organisation with an excellent reputation to uphold.

paradime profile image
paradime in reply to TSH110

Hi TSH110, I went also hypo in my 20s and was treated at 50.

I absolutely agree that people should be properly selected and trained, but to "have the facts at their fingertips" is fine if they have once had a broad understanding of ALL aspects of hypothyroidism and just need to revise details or look up specific numbers. I have this illness for 40 yrs and was 'treated' for 10 yrs before I heard of poor converters and reactions to tablet fillers, etc, courtesy of this site.

I don't believe anyone should want to design a helpline to give only one opinion.

I don't believe the other helplines wanted their services to be poor, (and generally they were not). I think patient support groups have to rely largely on volunteers for this kind of work. Now, I prefer a knowledgeable amateur to a 'professional' any day, but where would one find enough knowledgeable amateurs?

Others make very good points about the usefulness for people who are not internet savvy, and the immediate interactivity of phone discussion.

TSH110 profile image
TSH110 in reply to paradime

I can’t believe in the whole of the U.K. there aren’t enough people to be found of a decent calibre to run a really good thyroid helpline. I would prefer the people running it to be paid rather than it being manned by volunteers. I don’t know the figures as to how common similar helplines are run by volunteers or paid staff. It would be interesting to know. I worked on a very good help line. We had a detailed library of information on subjects we were likely to get enquiries about which we could refer to to help the person out, using well designed crib sheets allowing easy extraction of pertinent information. We had amazing founders who had set up brilliant systems in the charity that really worked.

People generally want specific information or guidance and a good helpline should be able to provide it or point the person in the right direction. We were not a big charity with lots of funds but what we did have was maximised by clever and thorough design and good training. Most people were paid staff but we also had volunteers.

Why would thyroid U.K. risk their reputation by providing a sub standard telephone help line service?

paradime profile image
paradime in reply to TSH110

A curiously slanted question, obviously no one wants a sub-standard service, or to damage the reputation of Thyroid UK, I certainly don't.

I am glad to hear of your positive experience of working on a helpline, and pleasantly surprised that most of its workers were paid. I note that it needed some volunteers, presumably because of limited funding.

The poll is presumably based on some understanding that a good service could be afforded. I do not know what can be afforded, I was making an assumption based on what I know of other patient support helplines that it would need to be largely volunteers - again, pleasantly surprised that they aren't all.

The aim of the poll is presumably to assess potential demand from existing members. Other members make the very good point that more demand may come from those who can't, or have not yet, access(ed) the site.

TSH110 profile image
TSH110 in reply to paradime

Do we actually know that help lines are generally run by volunteers? I can’t be sure that’s the case. It may well be. The volunteers we had did great work for us, many were highly qualified too. So I don’t want to knock volunteering or anything. I just feel it should be properly funded.

I just find it odd that people have assumed it would be the awful kind of service many of us have had on our thyroid journey when Thyroid U.K. are suggesting it under their umbrella. It would have to be good quality, surely.

paradime profile image
paradime in reply to TSH110

So neither of us really knows the proportion of volunteers on helplines. That was not the point. No one is knocking volunteering, or things being properly funded.

I was amazed how many respondents thought the helpline would be staffed by medics of the usual know-next-to-nothing-about-thyroid variety, in view of the fact that Thyroid UK is an excellent patients supporting patients organisation, that is clearly rightly sceptical of most medics' knowledge of thyroid.

I really have no idea how a helpline would be funded, and of course I would like it to be good quality, if it goes ahead. My comments were that a forum gives a variety of views, and is cheap to moderate. Also, I have had some good, some bad experiences of helplines run by other very good organisations. We cannot assume that Thyroid UK's umbrella is necessarily totally impervious, or indestructible, just because Thyroid UK is brill.

TSH110 profile image
TSH110 in reply to paradime

But it should bode well… if it ever happens

I have stated whenever I have a query, which to be honest could be fairly regularly.

Probably never.

Occasionally - hopefully not too often, e.g. with medication problems or testing queries

To be able to speak to a representative from this great pool of knowledge would be fab. I manage my own blood labs and replacement, and I'm well on it. But there might always come a day when I can't and I have to fight my way through the system again, words failing me when faced with medical authority.

Only if they knew what they were talking about

20 /30 years ago, I would definitely have used a helpline, but not now. I think it would be really useful for undiagnosed and newly diagnosed patients along the way. Early on in the thyroid journey, we have so many questions and really need someone knowledgeable to speak to.

Wouldn't use

Hi, I've never used it! Since being diagnosed hypothyroid some 10 years ago, I had to research the condition and its care, my local medical practice being useless for anything except providing T4 tablets...Unfortunately, I find that I'm an outlier, needing a very high daily dosage of T3, but having established that, I'm now both highly active again and feeling healthy. Given that background, it's difficult to see how I might use a "hot line service", such as this.

It occurs to me that most of us answering the poll are probably comfortable with the internet. There is a different constituency out there who might well welcome a helpline - those who aren’t comfortable with online stuff, or who face accessibility issues, or who don’t process written information easily. I’m not sure quite how you gauge their need other than trialling a service.

TSH110 profile image
TSH110 in reply to Thalia56

Good point

Probably never. The forum has been a godsend for me. Through the information I was given I actually was able to educate the endocrinology nurse practitioner!

If it was to speak to some of the brilliant admins on here I’d use it but if it’s just a NHS GP then it would probably be a waste of time.

Never

Never. I have yet to find an "advisor" GP or endo that I trust.

I doubt I’d use it at all. I find the discussions on this regular email very helpful.

Probably not at all.

I think this would be of most value to the newly diagnosed. Unfortunately GP’s don’t always know much about thyroid issues. Endocrinologists may be specialists in diabetes rather than thyroid. So I think it’s a good idea.

Not sure how often. Maybe when I have a general query.

I feel I'm unlikely to use it. If I have to leave a message and wait for a call, the timing might not be convenient. With the forum, I don't have to wait for a response - I can check when convenient and the information is spot-on. Often the question has already been asked and answered. Result!

I'm many years into living with Hashimotos, including years when I was just 'Underactive thyroid' , and not told it was autoimmune. Much of that was pre-internet and a helpline would have mitigated the isolation and helped me understand. I was so lucky that Dr Peatfield was finally there to be found -thanks to advice from a local TUK group.But this is a new era and like many others replying I'm fairly educated in how to manage my health and bolstered by this group against most of the worst defensive/aggressive behaviour of doctors. I still need to ask advice sometimes, and probably would choose the online forum because there is then a range of responses.

Being on the helpline wouldn't be an easy job. You would need a broad understanding of the complexity and good basic counselling skills.

TSH110 profile image
TSH110 in reply to WildDeer

That’s a very good point, the forum and a helpline are completely different beasts and can’t really be seen as interchangeable. They really are quite different in essence.

No I wouldn't use it. Its one person's opinion without a medical training. I prefer the variety of input currently.

It would very much depend upon who is answering the phone? I trust the advice I trust have received via the forum which is also further balanced by the views of often several different people who reply. I cannot trust the advice of mainstream medicine which has at best been unhelpful and at worst downright dangerous. So my answer is maybe but unlikely.

Never, I hate talking on the phone. So that would be a major barrier in trying to help/heal myself. I prefer to read and absorb the excellent advice and information posted here. This platform is a game changer health wise thank you to everyone.

Never, for reasons stated in response to first poll.

Other organisations run health lines like this & frankly I've found them very useful. I think the problem is so many people in the thyroid (&b12 deficiency world) have received poor treatment so there is mistrust in the idea of a helpline. However please bare in mind Thyroid UK set up the site on Healthunlock & an so grateful to them for doing do so.....I am as well as I am because of this site. Therefore I see no reason why a helpline couldn't be of a great help too. Its not intended to replace this site.Thank you to Thyroid UK for proposing this idea. I and am sure others really appreciate all that you have and continue to do. 🤗🤗

Is this like the Ghostbusters help line? I'd be more likely to ring that than a "thyroid helpline". Unless the people on the helpline knew what they were talking about then - Never.

Never

Would not use as find online literature quicker to access.

I would contact if I am not able to get answers from medics or forum members on the Thyroid website

Impossible to answer how often I would use the service.

Always good, for others knowledge,& mine, as always learning about myself::

Never

Never

No, because I’m deaf. Since everything switched to phone appointments, I can’t even access my own GP service these days!

TSH110 profile image
TSH110 in reply to lemurtail

Can you use this service a called Relay? It mentions contacting GP’s using it: rnid.org.uk/information-and...

Wouldn't use as my thyroid readings/medication are unlike others and therefore would prefer to deal with person who knows me and has access to my medical records.

It would be an excellent service if manned by Thyroid UK staff who can pull together all the knowledge from this forum -it should be a premium line to recover costs sometimes it’s much nicer to speak with a sympathetic human than type stuff up and hope for the right replies -plus presumably wouldn’t be constrained by the rules on platform ?An example-My daughter had a serious and unresolved bladder problem for years and just one phone call to a bladder charity and I was given lots of fresh advice and name of specialist with very different approach and now she’s finally on the mend

TSH110 profile image
TSH110 in reply to Legoparis

Wouldn’t a premium line put people off calling? That seems a strange idea if you want to reach out and help people, it would make the service less accessible.

Probably never … it would of course depend on the knowledge of the person on the other end of the phone but would hate to think I’d phoned someone expecting help only to find I am left frustrated and disappointed by the answer given …. I can get that service from my doctor already .

As I voted when I have a problem it’s difficult to put a time limit on it

Extremely rarely. Plenty of good information here.

Never

I find the system administrator to be very quick with response to queries and extremely knowledgeable. I’m quite afraid of the telephone so I would prefer texts and the way things are done now

When needed.

Never. This forum is more helpful than a help line. There is so much info here and we can ask for blood test results etc. and get replies.

You would have to find very knowledgeable people to man a helpline.

Different accents can be confusing. I worked on a hot line for a few months a long time ago - the user systems were throughout the country. One of the others manning the helpline was a cockney and found it really difficult understanding northern accents such as Geordie and Scots.

TSH110 profile image
TSH110 in reply to Anthea55

I was told by some Glaswegian friends to used teletext when watching Rabb C Nesbitt - it was great advice, I never missed a word after that! No help for a helpline tho.

surf8111 profile image
surf8111 in reply to TSH110

lol haud it n daud it

Well done tattybogle before I read your post I would have agreed with greygoose however your link was useful and I do understand what sort of service would be provided.

I may well have used it at the start but I very much doubt it now.

I do think that the phone operators will need mental health training first and foremost as I know that there were times when I felt desperate and I sort of feel I won’t be alone there. The frustration in dealing with feeling so awful along with trying to function whilst getting no help from the medical profession took some getting used to. You only have to read some of the post we see on here to get some comprehension of that without the anxiety symptoms that some do feel.

No doubt the mental health aspect has been considered and so surely another way of communicating can only be a good thing?

Probably not, or once to try it, but not much confidence in it for all the same reasons others have stated here.

most likely when i have a disagreement with medics, but this forum gives best results, so probably wouldn't use

Doubtful that I ever would

I use the forum as my 'go to' place to find information that educates and helps me with my condition. I have learnt so much in the past year. Having a telephone help line would be really useful if my query involved discussing sensitive information that I might not feel comfortable posting to the whole community. Can I also add that I really appreciate this wonderful group of folk who support each other , especially the administrators who are so very helpful! Thank you.

Obviously we would need to know and be assured that the person on the end of the phone was reliable and competent before they were appointed.

Right now I think probably never but in the future who knows...

Never, for the same reason I gave in the first poll.

I would rely on my endocrinology doctor for any advice on thyroid medication.

Never

I wouldn't use a helpline. I prefer posting on this forum as you get different views and feedback from different people, not just one person's idea on what you should do

Think there needs to be a “not at all” option here, otherwise the findings won’t be accurate.

I am in agreement with other posts and the previous one I just read by Geogeor. I would not use or trust this for advice. The medical profession is failing miserably at helping people with autoimmune thyroid conditions. My most positive exoerience and help has come from Dr Isabella Wentz the "thyroid pharmacist" for integrating holistic ways to handle.

probably never system works as it is

I would say I probably never would use a phone helpline.

That being said I have gained so much information and support from using the forum with regard to my thyroid it’s giving me the confidence to look after myself much better than my health professionals did.

I wasn't aware we could.

As I have contact with my endocrinologist twice a year, I’d feel I’d hardly ever use a telephone service, I don’t even know what help they would be willing to offer me, as at one point I went to seek help from my GP who sent me straight to A&E only to be told that they didn’t want to touch my medication or give me advise and to wait for endocrinologist to contact me. I would prefer any money goes towards educating the population on how hard it can be to live with thyroid problems (and adrenal problems, which I also have). As my employer has no idea on how it affects my daily living and my work life.

Never

Prefer online

I responded other, meaning unlikely. This is because unless I was given the information about a helpline by a medical professional I might not find it. Even if I did find it I feel that the help available would be limited, perhaps just being given a little reassurance and directed to this forum, hopefully. I can't imagine anyone answering a phone would be of much use for anything else. :-)

probably never.

You've been very quick responding to my emails, and nothing I want answers to meds am immediate response, so I probably wouldn't use a thyroiduk phone number.

At my worst times, navigating a forum - like any social interaction - was hugely difficult both in conveying my thoughts, and engaging with responses. Live talk could cut through the nuances. My only reservation is the potential for overuse. I might be wrong, but once upon a time, I would have seen it as a lifeline.