Access to a telephone helpline for information ... - Thyroid UK
Access to a telephone helpline for information and advice would help me manage my thyroid condition better
lynmynottPartnerThyroid UK680 VotersPlease select one:
Excellent idea!
There are so many experienced and knowledgeable voices on the forum, whereas there might only be one voice on the phone...
Hi I’m new to this forum and yes I agree sharing experiences is a good thing. And a telephone line would be great as it’s not easy to ask your gp and have to wait for an endocrinologist appointment!.This community is very interesting and a telephone helpline where you could chat to someone would be helpful
I totally agree and in addition by reading this forum gives you a better understanding and knowledge of the condition and sometimes you come across something you’ve never considered before and that widens the understanding and knowledge.
Self experience is great for the individual so they know what is normal for them, but their info should not be in place of a medical professional.
Sadly, most of us come here because the “medical professionals” have let us down…
In 9 years I've not found an NHS doctor who has a clue about what's wrong with me. If Levo works then fine. But if it doesn't they brush us under the carpet.
That must be very frustrating but my GP has been fantastic - retesting every time I ask. I think one of the problems is that the people on here have had problems and may be most of those who are not on here haven’t.
We hear about every swimmer attacked by a shark but it doesn’t mean every swimmer gets attacked.
If a survey were done of all people with thyroid problems to find out if they were satisfied with their treatment I think you would find the majority are. This website is the minority.
I work for a research institute and do health studies and frankly, the treatment of the majority of people that have thyroid disease is woeful.I don't think I've met anyone content, or well, with the disease. The problem is that the majority of us are diagnosed late and end up with conversion issues as a result.
Have to say, I love your Name tag.
in germany i needed private insurance & was informed irrespective of my situation the slow diagnosis & mismanagement of thyroid issues meant most patients health was ruined & inclusion in insurance cover was not possible. having it confirmed was a shock.
Possibly. But my impression is that many do seem OK for quite a long time, then go downhill.
So for ten or twenty years they would say they were satisfied but thereafter they are not.
I have never been formally diagnosed by an NHS GP. I was diagnosed and started on thyroid by Dr Peatfield and then later by a menopause private doctor as Dr Peatfield had stopped practicing and for a time I'd been off medication as I couldn't deal with it without him. I came to him too late sadly. He was well into his 80's when I saw him. Lovely man.
Anyway, I'm Reading Tears Behind Closed Doors at the moment and some of the things that woman says in her book make me thing I could have been mildly hypo for decades. I've always struggled with weight, but with odd times when I suddenly slimmed down and felt good for a year or so and then it was a problem again. But the things that she made me question is much less obvious such as she couldn't keep awake as a passenger in a car. That's been me since my 20's (right after a bad bout of glandular fever). I would get in the car and fall asleep before we'd gone 5 miles. She said she used to love speed but suddenly couldn't bear it and was terrified of the fast lane. Me too. I was really scared of my husband's driving, but he was quite skilful, just fast and I couldn't cope with it. There are many other little things too. Keeping fit has been hard for me but I was really good in my senior school years.
I think my thyroid was affected by glandular fever but was really dragged down when menopause hit. And that's when I picked up a diagnosis. So I guess if I had been on a low dose of Levo from my 20's onwards, life might have been easier and I may not have hit the deck so hard now.
You say :
"Self experience is great for the individual so they know what is normal for them, but their info should not be in place of a medical professional."
and also :
"but my GP has been fantastic - retesting every time I ask."
However , you have previously said :
" I started having my TSH checked in 2014 and was finally put on Levothyroxin in 2019. During this time my results were all over the place - TSH being as high as 27.63 and T4 8.6 when I was finally diagnosed with hypothyroidism. During those years my TSH had been between to 5.88 and 27.63, my FT4 between 8.6 and 31.2 and my FT3 between 3.5 and 5.2."
A GP who is willing to retest every time they are asked is not enough .. we need GP's to act appropriately on the results, not leave people with untreated subclinical hypothyroidism for 5 yrs. Many here would think your GP's lack of action on your over range TSH between 2014 and 2019 was far from 'fantastic'
unless of course , you felt fine between 2014 and 2019 ... but if that was the case one wonders why you were having TSH retested.
You are lucky to have such a GP. "If a survey were done of all people with thyroid problems to find out if they were satisfied with their treatment I think you would find the majority are. This website is the minority" your'e kidding!!!!
Well, that would be fine if the 'medical professionals' knew more about thyroid problems. I really think I would be dead by now if I'd trusted my GP - this forum saved my life. I would be dismayed to find myself on a phoneline talking to my GP or the practice nurse... yikes!
My thoughts exactly. The range of experience on the forum is what I appreciate so much
That would be amazing . Anyone doing this would not be able to give personal medical advice as they don’t know your medical information. It would be good though to give advice on foods that can affect your thyroid and thyroid meds absorption. As I didn’t realise this until I found an awesome endocrinologist who has helped me he has had a q and a on his social media account on twitter and gave out some interesting things and links . He is a clinician and knows his stuff
I’m not on Twitter, do they have any other accounts ? My gp has told me nothing at all !
Not sure I only know their on twitter .
Any chance you could direct me to it, also, please?
Ooh can you PM me a link to their Twitter feed pls? And their name and hospital pls?
I’ve DM’s you.
Would you mind sending me the info too please 🙏
Can I have the information also, please.
Info please too
Thank you! 
Hi Thyroid2020. Can you please PM me their name and a link to their twitter feed? Thanks!
And please pm me too! Thanks
Could you pm who your Endo is please. He sounds great x
Please would you DM me with the Twitter name as well? Thanks x
Can you DM me also please - i'd be very interested. Thanks
Can you send me details of their Twitter account too please? Thanks
Please could you p/m his details to me too?!
Can you PM me their twitter link please? My GP and Endo are both useless when it comes to listening to me and treating my symptoms and not my reference range
please also PM me details if you don’t mind. Thanks
I am not on twitter. Is there anywhere else I can get this information from him please.
Hello Thyroid 2020. Could you please send me the Twitter details about your helpful endo too, please? He sounds like genuine soul. Kind regards, Thyrigia
oh please dm me his twitter link! Is he UK based or US as so much advice comes from the US which isnt always a benefit.
Could you DM me a link to this please, thanks in advance.
Could you please DM me too. Thank you!
Hi If possible please could you send me a PM with the info. Thanks
Hi could you please give me the details of this endo . Thank you.
Could you please e mail me the name of your endocrinologist
Ýes, such an excellent idea.
How can you possibly answer yes or no to a question like that, when you have no idea who would be at the other end of the line, nor how much they know about thyroid. It's something one would have to try out to know the answer to that question.
Agree to a point grey goose but the principal of having a helpline staffed by suitable people sounds very appealing to me. I have another very serious autoimmune condition and the charity dealing with it has a helpline staffed by some of their team. They offer support and advice and it's invaluable to anyone who doesn't have the knowledge or access to the right help.
In theory it would be a great idea, but... I still don't think you can answer yes or no to that question without having tried it first, in a vacuum, so to speak. There's no guarantee that the advise given would be as good as the advise given on here. We have no idea what sort of person would be at the other end of the line. Would it be a doctor, towing the NHS line? Would it be someone who is a thyroid sufferer or someone who isn't? How much time would one be allowed to talk things over.
I agree with Ziggy17, she makes a very good point, there.
I think there's space for a forum like this AND a helpline? And it goes without saying that whoever worked on it would have to be trained to do so. Loads of health charities have helplines staffed by knowledgeable and trained staff. Your quote "There's no guarantee that the advise given would be as good as the advise given on here." could also apply to many endocrinologists in my opinion too! 
I've learnt a lot by reading online and sometimes endo's can't answer pretty basic questions (backed by scientific papers). I have found support from other patients invaluable but am sure there are some circumstances when a helpline could also be extremely helpful.
Well, personally, I don't think I'd trust a helpline. And, who would do the training?
I'm sure lots of health charities do have good helplines, but thyroid problems are so complicated, I don't think you can make a comparision with other health problems.
Totally agree about the endos! lol I'm not standing up for them in any way. I definitely would not use a helpline if I thought there was an endo at the other end!
I so agree with you about the complex nature of thyroid conditions making it difficult to provide a comprehensive thyroid support helpline. We all experience different symptoms and differing medical histories, in addition to which the thyroid levels at which we each feel our best vary greatly, so that a single set of solutions would not only be impossible to provide, but might be actually less than helpful. Who would approve and moderate the links provided, too, as even some of those recommended on HU are sometimes debatable and/or controversial! Ultimately I prefer to trust my own judgement and research before committing to any course of treatment action.
I agree with you , and greygoose , and Ziggy17 . I think it would be difficult for one voice .( however well trained and trusted) to be as good as multiple minds and viewpoints can be , in a subject where everyone is SO different in their symptoms and response to treatment.
And there's there is the issue of the amount of detail we need from the 'caller' to answer them safely.
I'm thinking of how long it can take to get to the bottom of somebody's question on here. It is often half way down a post, when the the poster reveals something very pertinent about their blood results in response to a question from the 6th person who came along to help. and we then realise that they took the last dose of T3 36Hrs before test, so the bloods are incorrect. or they didn't think to mention they took lithium etc .
The great benefit of the written forum is it that people can comeback and continue the same conversation having got hold of results , or ref ranges asked for. and they are written down accurately for everyone to think about. This sort of continuity would be hard to improve on with a help-line setup, and how good could the advice be without the full information required. ?
So i cant tick "yes " or " no " to the question .. my answer would be . "a help line might be very useful for some simple queries , but for problem solving and emotional support i think it would be hard to improve on the forum,
You are so right in all you say!
I agree. And that is the trouble. We are all relying on our GP's (or most of us are) and that is only one voice. Thinking back I think mine may have started after hysterectomy in 1989, but way back then I didn't make the link and obviously GP at the time didn't either. Was put on levothyroxine and tested annually. For years it barely changed. In the meantime I was having all these other problems, (none of which were ever mentioned as being due to thyroid) , which were eventually - and I mean eventually, which I won't go into now- put down to fibromyalgia (2009). Since then I have got gradually and everything seems to be down to fibro. I can't take the medications offered, and they didn't help[ anyway, only made things worse. I have never seen an endocrinologist during this time and from what I have heard on here, it probably won't make a difference either. (I have asked but told it wasn't necessary). Paid for private blood tests which showed some anomalies, which needed attention, but GP would not acknowledge them. As far as they are concerned tghey will only use NHS tests. Between a rock and a hard place. Unfortunately I did start getting help on here, but caring for DH, also with multiple problems including dementia and limited mobility; plus lockdown and inaccessible doctors, add a nasty scalp cancer I had to have taken out and it has been a nightmare year. Which looks to be carrying on. Can't access health centre for Flu jabs or info re top up for covid jabs even though DH is 82 an I am 79 . He is overdue a review but we have heard nothing which is worrying as I think his medication needs upping. It takes forever to get through on the phone eg. 39 in the queue, and then you get cut off. I tried a phone number today and was told the line was switched off. It really is a nightmare. My anxiety and stress levels are through the roof and I don't know where to turn next. Don't think social services will help as they only seem to deal with practical issues , which we are managing at the moment, and they were at pains to point out that I would have to pay. Surprise surprise. Maybe I will contact Age UK again as they at least have been very helpful . Thanks for listening. Take care.
Thanks for cleary stating what I was thinking. I confess to looking for a Not sure option but no just the yes or no.
bit grumpy for you! i was assuming - perhaps stupidly - it would be staffed by competent professionals. ever the optimist or my brain damage talking?
Have you ever met a 'competent professional'? I haven't. Not where thyroid is concerned.
yes, true. but before t3 epiphany i was facing doing it all over phone via usa specialist. it still may happen - lets see next week with gp & blood results/ scrip for t3.
I don't think they're much better in the US, either, from what I've read on here. Talking to some American hypos, their so-called specialists seem even worse than in the UK.
We definitely need something to address the gap between primary care and actual health, given thyroid conditions are auto immune conditions / long term / for life.Perhaps an app and series of online worship/ presentations like the Peppy App. The service provided by experts is SO helpful for maintaining health and well being at key life stages (& takes pressure off NHS)!
Not all thyroid conditions are auto immune. Hashimoto's is the auto immune thyroid condition.
So true. It’s bad trying to get a diagnosis from the NHS if you have Hashi’s. Try having Central hypothyroidism. No chance. This forum has been in valuable although the majority of members (and advice) are Hashi sufferers.
I was diagnosed with hashis 11 yrs ago & still have issues in nhs. Its mind blowing.
Great ideas!!
Thank you very much for the opportunity to vote.
I think a telephone support line would complement the forum. The forum is invaluable, and I would never want to lose it. The open nature of it means we can all contribute and learn from each other en masse, something you cannot do on a one-to-one phone call. A phone call is more personal.
It would be good to have a telephone helpline and its success hinges upon the expertise and interpersonal skills of the person taking the call. The more ways to access information that we can offer to help people with a thyroid condition, the better.
At one time, I was concerned I might have Sjogren's Syndrome (fortunately I did not) and I was able to access a telephone support line and speak to someone with the condition. It was hugely helpful and I really appreciated it.
Who would we be talking to? Would they be medically qualified? An acknowledged expert on thyroid things? Would they be able to prescribe or influence a GP regarding what tests, medications and doses you should be given?
Not sure this is an easy yes or no question. If this was run by the NHS: No.If it was a way of paying and giving proper credit to the admins who run this forum and know a lot about how to manage your condition: Yes, but they’d need training in doing so, and would need to have very good insurance as they are not all medically trained.
The Asthma U.K. Nurse Hotline is brilliant.
Ditto Macmillan Nurse Hotline.
A thyroid Hotline, though - I can’t yet see it.
None of the admins are medically trained. No-one on here is medically trained, as far as we know. And non-adim also give excellent answers - admin are not chosen for their knowledge of thyroid.
Agree with you re: calibre of advice. Am guessing that admins spend more time than everyone else here giving out advice, but could be wrong.
Does the Thyroid U.K. website contain much useful info of the type given out here? I feel it would be worth getting that right first before setting up an advice line.
The advice lines I mention above are both staffed by nurses. Is there such a thing as a thyroid nurse?
Am guessing that admins spend more time than everyone else here giving out advice, but could be wrong.
Well, that's easily checked just by reading on the forum and seeing the names that crop up the most. But, I'm pretty sure you're wrong on that point. And, that's not what they're there for, anyway. Their job is more administration - i.e. making sure the forum runs smoothly - rather than answering questions.
I can't comment on the Thyroid UK website, I haven't read it all.
There is such a thing as a thyroid nurse, but from what I've read on here, they're about as much use as doctors! The truth is, the medical community knows next to nothing about thyroid. They just don't learn about it in med school. Neither nurses, nor doctors. Which is why I spend so much time on this forum, and self treat. I will no-longer trust my life, health and well-being to a medical professional.
We don’t disagree, fundamentally.
I think we agree that the kind of advice people can rely on getting here is a precious resource. And that a telephone advice line might not be a good way of replacing that.
What kind of written information does Thyroid U.K. already produce? I have worked on a consumer / legal problems type phone line, answering phones, and from this and other experience of giving professional advice out you need to have all of your materials and guidelines written down as a manual first, rigorous procedures in place - not just for training and development but for complaints and calls you didn’t get right - and so on.
You then have to log all your calls, while being mindful of Data Protection, and train all the people on the advice line how to log these calls.
I am much more in favour of Thyroid U.K. changing the medical perception of what a thyroid condition looks like and how to treat it, than a helpline that promises to use up much more resource and still potentially not be as good as this forum.
Yes, I think we do agree, pretty much. But, the thing that makes thyroid difficult is that symptoms and reactions to, and effectiveness of treatments vary so much from person to person. There is no one-size-fits-all, so a manuel wouldn't be a lot of help. It's such a personal disease, if you see what I mean.
I think one can write these things down. The range of options isn’t endless.Which things do you think can’t be catalogued?
I can't answer that question, either, without a substantial amount of time to think about it. Perhaps none of it.
It’s telling that neither of us uses the Thyroid U.K. website. I’ve never seen it recommended here as a resource.
Oh, I've seen it recommended lots of time. But, it's pretty basic, and I passed that level of learning about thyroid a long time ago.
I refer members to it regularly!
I doubt it's about what can or cannot be catalogued....it would be about the extensive volume of detail that would need to be recorded to (even) attempt to cover every thyroid issue. Imagine flicking through that lot in order to answers a caller's question.We are all different with different needs and therein lies the challenge of treating thyroid disease.
As I said earlier I think it's tantamount to opening a can of (very expensive) worms!
I totally agree with your comment, "I am much more in favour of Thyroid U.K. changing the medical perception of what a thyroid condition looks like and how to treat it, than a helpline that promises to use up much more resource and still potentially not be as good as this forum."
Yes, you've summed that up very well, DD. Exactly what I was thinking but had trouble putting into words.
Some days the words come, others there is a void!
Agree
" I think it's tantamount to opening a can of (very expensive) worms!" I agree DippyDame I also agree with HowNowWhatNow 's comment "I am much more in favour of Thyroid U.K. changing the medical perception of what a thyroid condition looks like and how to treat it, than a helpline that promises to use up much more resource and still potentially not be as good as this forum."
There is a conflict between the admin/moderator role and directly answering questions/having a dialogue with individual members.
For example, if we get spammers or trolls, it can can a lot of time to go round their posts and generally handling the issues they create.
And if we get problem posts, even if everyone involved is acting with good intent, it can similarly divert from individual answers.
I am absolutely delighted when other members answer posts and take my hat off to the effort so many put in. As well as to fellow admins.
You all do a fantastic job. It can’t be stated enough. I don’t think that this work can be replicated in a helpline without a huge amount of resource being committed, indefinitely.
Fantastic idea. I love this forum, the advice is well monitored. I would think a telephone consultation could be very helpful for some people who are desperate to get some information but have such brain fog they can’t get the right words down to ask a question. Just being given guidance would be a big help I’m sure.
As for people saying “would they be medically qualified?” Well, many doctors don’t give any/the correct advice……….
I trust the advice from the admin on here more when I need to make an informed decision.
Wonderful … really needed !
It is a brilliant service as it is!!
Sounds great but I can speak to Doctors who know less about the thyroid conditions than members on this site any day of the week.
Great idea
Great idea
Good idea in principle. In my own experience I’ve had conflicting advice from endocrinologists (NHS vs private) leaving me bewildered, poorly medicated and angry.
Great idea, but only if it was staffed by well trained thyroid experts.
Agree. This forum is very well run and contributions from a range of people, so promptly given, are a huge support. Being able to talk to someone knowledgable, especially when the condition changes or when newly diagnosed and worried, would be of value but the priority is to keep this site doing what it does. Thank you to all of you.
In principal yes. It’s a starting point and like anything would evolve over time. Certainly worth a go, I’ve often felt like I would appreciate actually speaking to someone with knowledge over the years, sometimes you can say and get across when speaking to a person.
I’m going to say a qualified yes. I think sometimes the written word can be misinterpreted. Also, sometimes it’s easy to forget to mention that yes, you’ve already done/tried x,y or z, and it can lead to people replying to you in good faith but telling you stuff you’re already aware of, or are doing. Not everyone is great with the written word, and can get bogged down trying to explain themselves. Conversely, explaining something when you are conversant with it may be easy for some, but understanding what’s been written may often be confusing for the reader. At least in a spoken 1:1 conversation, it’s a bit easier to ask for something to be repeated, or to be able to say “Yes, done that”
I certainly wouldn’t see it as a replacement for this forum, but it could well be a useful adjunct.
However, I also fully understand the concerns raised regarding bearding wh would staff it, and how they would be indemnified. That said, anyone who has phoned NHS 111 will realise it’s not exactly the encyclopaedia Britannica of medical knowledge…..
Think cost would outweigh usefulness. Forum is brill, if only I could work it better, perhaps I need a helpline, Doh!
Would we have both? A voice can help so much on occasions, however the good sense/info from so many as on here is a Godsend?
Yes definitely. But not instead of the forum on Health Unlocked.
Fab idea! 😊
My immediate thoughts were: this would've been great when I was first searching for a diagnosis and I didn't really understand most of what was spoken about on here. I would have would it immensely helpful to have someone to talk it over with.
I also would've found it really helpful to go back to my GP with 'I've spoken to a nurse at thyroid UK who says...' rather than 'my research suggests...'
However; I only voted yes if it were run as the forum is. With well trained, well researched, curious, empathetic staff as the admins are here.
The admins here really advocate for us and empower us and I would expect that to translate to a phone line!
With well trained, well researched, curious, empathetic staff as the admins are here.
But they're not trained. Nor is it just admins that answer questions. All those that answer questions - often brilliantly! - are not necessarily admins. Not that I'm putting admins down, they do a great job managing the forum. But I think it's unfair to all the non-admins that give great answers to questions. It sounds as if you're ignoring/playing down all those answers.
I rarely bother answering questions now as Admins always jump in first with frequently copy and pasted replies, so what's the point, us mere mortals can feel redundant !
Absolutely. I use the term loosely I suppose because I can't think of a better word to include all the 'frequent posters' there are loads of you who are not admin but who I consider 'admins' because you're all giving wonderful advice!
Sorry, but that's very confusing. Not all admin give good advice, and giving good advise doesn't make you an admin. How about the word 'people'?
I was just trying to compliment all the 'people' who willingly give up their time and share their knowledge on a consistent and regular basis who deserve more recognition for the support they offer.
I don't know why you're nitpicking me on it. 🤷🏻♀️
Because it's not a compliment. And I think it's misleading to the new people on here to promote the idea that admin are trained experts in thyroid, and only they can give good advice. Because that's the way your comments come across. It's not 'nitpicking, it's just stating plain facts.
No, you're not. You're stating opinion.
That's how you interpreted what I said which isn't the same as how everybody else has or will interpret it.
I have since clarified what I meant by 'admin' and you're still trying to correct me. 🤷🏻♀️
The telephone line would be an excellent addition to this already fantastic forum, as long as it is run along with the forum and not instead of.
Oh yes. Without the forum…. doesn’t bear thinking about.
Sometimes just being able to air your troubles or concerns is enough. You don't always need medical advice; straightforward encourement from someone else who's been through the mill goes a long way.
Great idea. Sometimes you can just become so overwhelmed by all the information and need to speak to an actual person. The person I spoke to on the Pernicious Anaemia Society helpline was very knowledgeable and a great support to me. This together with Health Unlocked Forums has allowed me to take control of my own health.
If it is run by a medical professional, not just someone who thinks they know, due to their experience.
Interesting. Which level / qualification / type of medical professionals do you suggest?
In principle, this seems a good idea. But it depends who we would be calling and their knowledge i.e. I wouldn't want to call my levo loving endo! Ever!
The beauty about this forum is that most responses are carefully considered, and the details of such replies can be scrutinised by other members who may have better experiences (peer reviewed albeit non-medical). Therefore, together we're stronger.
That said, it could give some people a valuable point of contact and support.
To answer fully, yes or no, we need an example of what service you're proposing and with whom. Then, it may still be down to individuals whether they like the service. Well done for attempting to provide another alternative 😁
Very good idea !!!
I think it is a brilliant idea but only as an adjunct to the forum.
I feel that it could be a good idea but it also presents a myriad of issues. If it was a helpline that could signpost you in the right direction for more detailed advice that could be useful for some.
But if people are expecting to get specific medical advice particular to their own thyroid/endocrine issues it would possibly be much more difficult and surely would need qualified individuals, nurses? to work on it.
I know this is slightly off topic but from personal experience of previous volunteering on a bereavement support service, we were listening ears and sometimes callers wanted us to advise and often provide counselling but we couldn't do that and their is a fine line between the two. This often lead to frustration from those that called.
Also training could take some time to complete and again there isn't always a consistency between those on the helpline and the advice that they offer to callers (though there should be!)
I’ve spoken to several people with thyroid conditions who do not wish to access on line support/ forums. I think an advice line is a good idea for passing on basic information and supporting people to access information (eg is there a TUK support network in their area, how to find a list of recommended endocrinologists, how to join TUK and receive newsletters by post if required).
That does sound very basic. Do you think people need a helpline for this level of info? Couldn’t that go on the website? Or would that best be delivered by phone?
Not sure! Depends who is on the end of the phone as everyone has a different take on ‘the right thing to do’.
Are we talking in general terms, or about a dedicated TUK helpline.
Crucially it depends on who is offering the information and advice.
It is a responsible position to accept.
How would the call handlers be selected?
Thyroid disease is a very complex condition ...
A telephone call only gives access to one person's understanding.
It may be opening a can of worms for TUK
On the forum there is a chance that ( rare) misinformation will be corrected by other members, this cannot happen during a telephone call
We have a truly excellent forum, and website, offering information ranging from scientific research to patient's experiences, no telephone call(s) can do this.
But, on the other hand, I guess we must remember that not everyone has internet access.
Is this a gap that is envisaged might be filled by such calls?
Sorry, I would not like to be on either end of such a telephone call....but I accept others feel differently
If they don't have internet access, how would they know about the help-line?
The media. Newspaper adverts etc
Hmmm... Sounds a bit hit and miss. Probably wouldn't attract a lot of people that don't have access to internet. Would also increase costs if one has to pay for advertising. Not that I'm arguing with you. I just think you'd get so few people who didn't have internet access that that isn't really a very strong argument for needing a help-line, which is what Lyn is looking for.
I agree...
Just playing devil's advocate!The whole idea of a help line sounds expensive. I'm afraid I can't sum up a very strong/ any arguement in favour, but I'm just one grumpy, outspoken old woman among many others.
For me the forum rules!
I can second all that and also that of the forum being preferable.
Absolutely. I can't think of any arguements in favour, either, unless it's something like a Samaritan help-line, just there to listen to those who want to talk about it. I'm a second grumpy, outspoken, old woman, and I think that, forced to chose between yes and no, in the way that 'poll' does, I'd have to go for a resounding NO.
And I'm the third :
Make that 4.. i just hopped off the fence and voted 'No'
Fifth
I’m also a member of British Sjogrens Association and they have three volunteers who man phones at home. It’s very comforting when you’re worried to talk to a fellow sufferer who has knowledge to help you. I’ve phoned them on several occasions and been given excellent advice
I really like the idea of a helpline. Sometimes its really helpful to talk things through and sometimes verbal explanations are better than written ones because conversations evolve far more quickly so you can seek clarity when you dont understand. How would such a helpline be managed and who would the people be? What would their brief be & experience? Most of us are very ignorant about the thyroid when we first start out on this journey. Books & this forum has really helped me over the years. I would see a helpline as another option but never instead of the forum. Its reassuring to hear from others experiencing simular issues, as well as hearing their ways of managing their condition. There are some extremely knowledgeable people on here & therefore the diversity they offer is highly valued.
There are a lot of co factors that I did not pick up from thyroid books & certainly not from doctors but from forum members who enlightened me and as a result my thyroid replacement meds worked much better. I write this because whoever volunteers would need a wide knowledge/experience or the scope of the helpline would need to be limited and clear to the caller.
Definitely. I'm all for that. What a fantastic idea.
If you intend to operate a phone service, you need to look carefully at the data protection issues and get professional advice on what is required.
Would it be necessary to record all calls?
How long would it be necessary to retain recordings?
How can you ensure security of recordings?
Can you ensure anonymity? Given presentation numbers on incoming calls, and that it might be necessary to call people back, doing so might present some difficulties. Callers might also say who they are and where they live without even meaning to and this might be recorded.
Obviously, many organisations have already addressed these issues. Maybe worth contacting some of them?
I think you got my horse lol
I’m yes and no. It would defenitely help, but I think when you have things in writing, you understand them better, as sometimes in conversation you may forget or nay misinterpreted information. I think group is the only positive thing about my illness!
I don't think it's that simply and it depends on who is answering the question.
I don't think it's rarely just a 10 minute conversation anyway.
We have ongoing posts here and the knowledge base wide and various as we learn from each other, as the pool of people and knowledge here is considerable.
I'll pass on this one, thank you.
In theory, it seems like a good idea, but not everyone knows everything - having just one lone person on the phone giving out what could be quite complicated advice might not work?
If it was someone dealing with the basics about thyroid disease, that's fine. But the intricacies of multiple auto-immune diseases, intolerances/allergies, other health issues - it could be quite heavy-duty information needed.
The beauty of having an anonymous forum like this is that there may be several opinions given, and it might all be the right advice in different circumstances.
I think I'd want to know how it would work and what kind of advice would actually being given - and would it include support for mental health too - I honestly don't know how to vote.
The more help the better. Doctors do not appear to have the time that is necessary to treat their patients holistically these days.
I want a 'Don't know' option. In theory a helpline is very much needed. However, as so many of us know, advice from the medical profession is often poor. If HU admins could interview the candidates to man the helpline, I'd go for it!
All opinion polls should have a 'don't know' option, I agree with you there. Or else a 'not applicable' option. That is the problem with the vast majority of polls, they are written by people who don't understand how to get the right information out of them. Forcing people into a 'yes/no' answer skews the validity of the information gathered.
Being an Admin doesn't mean they are qualified to interview helpline candidates. I think everyone needs to understand the role of Admins and that they don't have any formal training making them any better than Jo Blogs on the forum.
A telephone helpline would be of great benefit, especially to newcomers to thyroid conditions.
Can’t see why anyone would vote against this 🤷♂️
Have you read through all the replies? They will tell you why.
Richardhall1 I have voted No for a myriad of reasons. Do you think you could take in and remember everything that is said on a phone? If answers are written as they are here, then a foggy brain can read it over & over. As greygoose suggests, you could read all the answers here to see why others have voted against. I have learnt an immense amount from reading other members' posts, with the amazing replies particularly from the many highly knowledgeable members.
Brilliant !
Well GP service isn't geared up to assist as they know nothing about condition apart from giving tablets
Oh this is great news!
Sounds like a wonderful option. There are always so many complex aspects to discuss so a voice call would make that so much easier.
Just another thought :
Do we know the number of people who read and learn from posts, but haven't written anything themselves.
I know I spent the best part of a year reading and learning from posts on here, whilst I built up my vitamins and minerals before I even felt well enough to be able to write anything.
If suffering with that obligatory brain fog we at least we can look back and reread replies.
I think a telephone conversation would be much harder to recall especially if any detail were offered - whereas posts on here can be written, reread, slept on and discussed further if the O/P chooses.
Very good point!
I personally don't think this would help at all as most of the NHS Doctors in England know less about Thyroid conditions than people on this site, I would even say I know more than every GP I have spoke to and do not consider my knowledge to be fantastic.
Unless I am misunderstanding and you meant a helpline linked to this site? If so I would probably still say the forum would personally be better for me as I prefer to have the information in writing so I can refer back to it, but that is just personal preference.
No sure it’s realistic idea, but it might be a helpful initial point of contact
A) thyroid disease is so complex
B) brain fog is extremely common and trying to understand results etc verbally would be difficult
It would entirely depend upon where this info came from .. if it was from a GP or an endocrinologist my answer is no!
im not sure as who would be running it? So cant say yes or no.
Yes indeed - so necessary. I’ve always found GPS not interested or educated in this matter. The latest thing at my surgery is - chemists are now employed as ‘doctors’. They decided to drop my thyroxine from 100 to 50.Has anyone else been passed over to the new chemist/doctor?
ANYTHING would be better than managing ourselves 100% of the time!
I voted yes even though I don’t think it would be for me but it might be right for others.
I think we need to know if this access to a telephone help line is instead of or as an adjunct to this forum,
I think this forum offers so much more than what it may seem on face value.
There is a feeling of acceptance and inclusion.
There is mutual respect from so many people that when, inevitable, one is in isolation dealing with one's own health issues, there are those on here able to offer that hug and support and suddenly, you feel validated and can carry on, carrying on.
Not forgetting the humour that tends to come and go, as does our T3 .
Great idea
Like the range of actual experience that forum members are very willing to share…’one size’ doesn’t fit all, so not sure a phone advisor would give me this range of answers to act on. I tend to use the forum out of hours, so again phone might not serve my needs.
Given the unfathomable attitude of many endocrinologists who deny symptoms and appear to consider patients as purely a test tube rather than a person, I feel a telephone helpline would be an incredible help.
There is no way I can answer yes or no to this question.I suspect it might require a number of helplines. After all there are so many aspects to thyroid health.
Personally I have never met another person with my history. I have had hypothyroidism since I had radiation therapy for a birthmark in the early 1950s. I was diagnosed at about eleven. Now 71 and worn out by being told by ‘experts’ and those relatively recently diagnosed that only autoimmune thyroiditis or those who have had a thyroid removed require any sympathy this century.
I have never met anyone who has even been on thyroid replacement hormones for sixty years. I suspect I am not the only odd one.
I know from this and other forums that there are very many different experiences for those with Hashimotos/ autoimmune thyroiditis I doubt one person could deal with all the issues these poor souls raise far less those of us with a multitude of different experiences.
I am sure lots of people would benefit from being able to have a good moan about bad days to a sympathetic listener.
I have lots of help and support from members here, not least with advice re vitamins etc.
Great idea thank you d x
I voted no because I interpreted the question to mean an NHS helpline. No doubt this would either be staffed by nurses or as the physio’s have, clerical staff with scripts to read off. If an expert was on the other end of the line, then my vote would have been yes instead of no
Great idea, many times that would help me.
I love that idea. That is in addition to the forum, right?
I answered ‘no’ in lieu of a ‘maybe’ or ‘it depends’.
When I think about the best advice I’ve received here, or the advice that’s given most frequently, it’s usually about dose increases, DIY testing and medicating, or something along the lines of defying conventional/institutional wisdom. I would worry that a helpline run by any organisation would need to be seen to be giving advice in line with ‘best medical practice’ for risk of being deemed irresponsible/dangerous.
It makes me wonder what advice could be given, even by sympathetic medical professionals without it becoming a consultation. Maybe advice about full thyroid panels, getting private testing, a steer towards finding a better more sympathetic doctor? Those things are a good start but where next? I would doubt results interpretation could be given over the phone, or names of doctors, or even suggestions of medication.
I think the short answer, for me at least, is that I’d like to know what advice could be given and what the limitations are. It’s really hard to answer without that.
" I would worry that a helpline run by any organisation would need to be seen to be giving advice in line with ‘best medical practice’ for risk of being deemed irresponsible/dangerous."
i agree , that's my concern about this idea too. But you found the right words when i couldn't
It’s a big concern.
A curiosity on my part is what the expectations are of the folks answering ‘yes’. I can’t see how it would be permissible to give advice over the phone like that that’s found on this forum. So what’s left? And is it enough be useful and meaningful to the people who call?
Well i suppose i CAN see some things that could be 'safely' explained, and some people would appreciate a human to explain it to them verbally , to help with the lack of clarity about 'what to expect ' due to GP's not explaining the 'slow' nature of thyroid hormones, and how many body systems they affect. And when you've got porridge for brains it is hard to read and understand stuff... These sort of functions could be done easily enough i suppose:
How long it can take to start to feel any improvement once started on levo ?
Why we have to wait 6 weeks for bloods ?
How soon it can be increased ?
Reassurance to wait longer before thinking 'it doesn't work'.
Also NICE guidelines could be quoted where GP's are clearly not following NICE guidelines about when to retest TSH for diagnosis or when to consider a trial of Levothyroxine.
Quotes to clarify the NHS route for asking for a trial of T3, and under what circumstances it can be withdrawn. but that could get tricky ? due to postcode differences.
But it would all have to be pretty General stuff, it would be very difficult to go into detail on any one's blood results, or actual 'advice' or opinion.
So it could be useful as a kind of "friendly reassuring voice, with general info on what to expect on Levothyroxine , and info on your rights/expectations of action from your GP".... and the info given that there are alternative forms of Thyroid Hormone that are very occasionally prescribed by NHS /Private Endocrinologists under certain circumstances.
( But i still voted 'No' .. i think the money, and hours required to run it, and complications and potential ethical /legal/ data pitfalls could be huge ... and a "factsheet for people diagnosed with thyroid disease" to be given out by GP's at diagnosis , with this sort of stuff explained on it, would be 'safer' )
A curiosity on my part is what the expectations are of the folks answering ‘yes’.
Yes, I wonder that, too. Perhaps some of them could tell us what they expect to get our of a help-line? I'd be very interested to know. But, I'm afraid they'd probably be somewhat disappointed by what they actually got.
This would be wonderful - a real Godsend !
Great idea!
Good idea as long as they know and understand thyroid disorders unlike a good majority of Gp's and endocrinologists.
I voted No. If it's run by the NHS I would expect the same robotic mantra and downright wrong information that I have always experienced over the past 20+ years from them.
I voted No.
For various reasons.
For a start, I would be worried about who is answering the phone.
If it was a doctor or nurse, private or NHS, then they would have to offer the same advice that GPs give. Giving advice which contradicted the NHS guidelines would mean they didn't stay a doctor or nurse for very long if the NHS got wind of what they were saying.
Many of us already choose not to receive doctor's comments on our private test results precisely because it echoes what the NHS would say.
If the person doing the talking was not medically qualified I would be worried how they had been taught about the thyroid, and who by. If they just end up parroting what the NHS would say then there is less point to that than having a doctor or nurse doing the parroting.
If the people on the phone are therapists of the type used by the IAPT system who offer or suggest CBT, rather than people intending to improve physical functioning, then I would be absolutely furious if that wasn't made clear at the start, rather than getting it sprung on me during a phone call. I simply don't believe that CBT or any other psychological treatment fixes a lack of thyroid hormones or nutrients.
Presumably whoever is doing the talking will be gathering personal information, including medical history, and once that info has escaped into cyberspace there is no getting it back. I am not trusting of much in the medical world, and the idea of my personal health info becoming part of some organisation's money-making schemes just makes me shudder.
I would much rather stick with the forum as it stands. And whoever it was who said extra funding should be used to disseminate better information to doctors on thyroid diagnosis and treatment - well, I absolutely agree!
If the helpline is staffed by patients with broad knowledge, perhaps that would work. However a helpline staffed by narrow-minded endos, probably would not help.
excellent idea
so. t3 experience.
started taking it after ordering everything else under the sun & nothing working. latest gp in scotland actually laughed when he discovered my heart rate was 'a little high' & my weight insane (242 instead of previously top 150 as an athlete). when i said i was sleeping 18 hours/ day - normal 5-6 - he wrote me a note to go on universal credit! he refused to do anything beyond levo which always made me feel ill. in desperation & with ideas gained here i stayed with random thai t3 i never used - in 2 months i have dropped 45lb while mostly sleeping & while i am nowhere near feeling GREAT i attest to feeling that is again a possibility. have lowered dose & split into 2 which seems to work better. am also anaemic again but new doc in cornwall has done a bunch of tests & we discuss monday. will need iron supplementation but version that is bio available as self & daughter cant take normal iron (bound to be fun).
so. almost 5 years of my life lost to uk gp's & farcical endocrinologists. during isolation forced thought (18 months now no end in sight) i came to realise all my joking about brain damage is actually serious & what happened 18 years ago has now been built on by last 5. my short term memory is gone, thanks to ptsd i remember crappy stuff as traumatic so it hid reality a bit - horrendous way to live. on top of that i now have a heart condition - was telling doctors this 4 years ago & they ignored me - i quit hiking group 4 yrs ago as simple inclines put my breathing/ heart rate into stratosphere & it was terrifying.
in short in the uk, as a lot of us can agree, healthcare needs a complete overhaul to focus on health over medical. NHS flipped me from top 5% fitness in germany WITH hashis & post BC treatment to whatever lies ahead. believe i now qualify as permanently disabled. quite an achievement. even at my worst i didn't think it possible.
7 years ago a german doc put me on synthetic t4 & t3 but it didn't work. now i guess that with body not converting t4 the t3 component was lower than in desiccated thus then crisis. credit due when it became clear there was a problem doc moved me back onto extrakt (german name) & i recovered quickly.
3 years ago i was prepping for legal fight but became to ill. now i'm no longer waiting - there will be no better time. i cant believe this has happened, used to joke if i ever came back here the NHS would kill me/ 3rd time unlucky and here we are, its foot soldiers have brought me to the edge. i'm still in disbelief but it is what it is. the amount of excuses people make for gp's & incompetent specialists needs to stop - zero tolerance the only option forward. no clapping.
the telephone hotline is an inspired idea long overdue. the NHS needs to fund it, not patients. am so glad i found this site, i think without it & short reprieve i had before thai govt shut its supplies down i may not have survived this long.
Personally, I think it would only help Newbies. To give them the basic information whilst they are getting used to the idea of having Hypo
It’s a great idea and could point folk to ask the right things of their doctors but I am not sure how it will help us to get doctors to change how they treat hypothyroidism. I would like to be able to try NDT or have some T3 added but doctors I have seen are fixated on TSH. I even had a thyroid endo say she wouldn’t have given levo until tsh was above 10 Thankfully my gp did start me on levo with a tsh of 4.7. (Bottom of range T4 with t3 not tested)
I was very symptomatic at that point suspect my t3 was below range, thanks to the great folks here I have gained so much knowledge on helping myself, but there are some things that can’t be done without a doctor or enough money to have private tests, doctor or private prescription.
