It is estimated that over 200 million people in the world suffer from a thyroid condition. Yet this debilitating disease is cloaked in mystery. On 13 September 2013 the London Thyroid Group is hosting Thyroid Question Time, an event that will attempt to answer some of the many questions that can leave sufferers feeling confused and isolated.
Attendees are invited to provide their own questions which will be answered and debated by a specially selected panel. Want to know what causes the disease? Your recommended diet for staying healthy? The best medicines and vitamins available to combat the disease? These are just some of the questions that will be discussed during this unique one-off event.
Held at London’s Royal Free Hospital, this is your chance to get the answers to the questions that could make a difference to the way you live your life as a thyroid disease sufferer.
Written by
Truth42
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We're a team of completely unpaid volunteers, all suffering from this awful disease and trying to find a way to get better. We're ordinary people just like you. We all have other jobs, kids, lives, etc.. We're trying our hardest to spread awareness, establish a community and – believe it or not – help.
So don't come. Nobody's forcing you to. Spend HOURS and HOURS of your own time working for nothing and organise your own event that isn't a 'fiasco'. Then you might understand what a totally thankless task this can be when people immediately start complaining from the safety of their computers.
One more thing – the questions will not be vetted. What a ridiculous thing to say. This isn't Big Brother, it's ordinary people trying to make a difference.
Well the questions in the big online event of 2012, which was arranged in conjunction with BTF, were ignored or the experts gave answers later, which could not be queried.
It was a real mess and left many of us who work hours and hours for free every week, year after year, seething with frustration at the incompetence of a group who could neither organise an event which could run for a week , nor offer any proper evidence for thir answers.
Look, I'm new to all this. I was diagnosed just over a year ago and I'm finding out about things as I go along. I was ill for years and years and made a decision when I was diagnosed to try and make a positive contribution.
This is the first event I've helped to organise. Prior to this I've been to two events which were helpful, in my opinion, but could do with improvement. I noticed that things generally got a lot more interesting when the speeches were over and people were able to ask questions.
This is why we thought of running a dedicated Question Time event. Although the BTF logo is on the leaflet they have zero involvement with this. Their logo is there because they generously pay for certain admin costs. I've spoken to no BTF members about this event.
We're doing this because we generally believe that it will be a chance for people to get answers to genuine questions. I'm sorry if I appear aggressive but it really pisses me off when people immediately start getting negative. There's no need for it. If you feel that what we are doing is wrong then come along and voice your concerns in person. I know that I would if I felt so strongly about it.
Well, good luck with the event, unfortunately the BTF involvement isn't a good one for many of us..... And as you see, its the first thing we picked up on.
Lesson learned : Be careful who you affiliate your group with.
I have no affiliation with the BTF. Seriously. The have had zero input into this. I'm just as keen as everyone else to talk about this disease. And it's not my group.
I have no opinion myself, either way, about this particular event. However my take on it is that people should be free to hold and express their own view about it here. Those with experience of similar events going wrong, or of BTF's involvement, might reasonably be expected to have a somewhat jaundiced or negative view about the likely success of upcoming events, and I believe that they are entitled to hold that view and not be criticised for it. After years of having to attend conferences professionally, I don't think it's the most effective or productive way of imparting information, so it's not something I would attend, especially with access to a world wide web of information, but others might find it enjoyable and useful. Each to his own. When we are involved in organising something we normally want it to be successful and can be sensitive to criticism about it, real or perceived; but nevertheless those expressing a view should not be criticised for holding it.
What you describe as negativity was purely an experience. if you are a regular follower here you would know that galathea and RFU are both respected posters and have been doing so for quite a time. I always find their posts honest and helpful.
I truly admire your efforts in bringing this meeting to our notice. I live in Crete so won't be there. I too want to take the world on and sort the Thyroid problem out - but am sometimes a little disillusioned when you can write a long post with suggestions - and then - no answer was the stern reply. ( don't know where that quote came from :-)... )
Many people are looking for a quick fix. Over 90% of thyroid illness stems from Auto-immune issues - do you have an expert answering the questions who have experience in that particular field ? It seems that Endos and GP's have little or no knowledge how to treat such a condition....which is really an Auto-immune condition rather than thyroid. It's also a long haul to wellness.
I was diagnosed at 59 after a lifetime of illness ( see edited profile ! ) but have decided that working through things yourself is the only route to take. We are so individual.
Hope the day is a good one and you come away with some answers You could always try asking here
Here is a vote for being positive about this event.
Yes,masses of us have reasons to be negative because of none diagnosis and bad treatment over many years.My first request for a thyroid test goes back twenty years which came back normal ....no treatment needed which left me in tears.My treatment didn't start for another ten years and even then I was under treated. I have plenty to be negative about.
However,we have to move on.
We need as many events as we can get all over the country( it isn't easy for a lot of Thyroid sufferers to travel long distance because of their symptoms)
This debilitating disease needs as much publicity as it can get and I do sense that the tide is gradually turning.
Good luck with the event and I shall do my best to get along there.
Just one question ......Is there parking or is it best to go by train ? I am in Brentwood Essex.
It's good that there's going to be an Open Meeting and you yourself want answers particularly if you are still having symptoms and on levothyroxine.
As I am not in UK at present I cannot attend but I would like to be a 'fly on the wall'. I await your blog re how the evening goes. I particularly would like to know why the BTA rely only on the TSH initially for confirmation of hypo and ignore clinical symptoms and don't test the T3 in particular. The TSH varies throughout the day. They will also not allow a trial of an alternative hormone which might make the patient very well. For your information this is a link and despite two yearly reminders to the BTA they never ever responded:-
Marfit I believe it's the train to Liverpool Street and then tube to Belsize Park, from where it is a 5 min walk to the Royal Free. There are parking spaces on the forecourt and there is a car park under the hospital building but I don't know how many spaces there are in total.
Thanks belwom for the trouble you have taken to give us some info.
It is not an area that we know , but the train route seems straight forward for us as our local station has fast non stop trains to Liverpool street.
We have a patient here who is trying to do something for our benefit and deserves support.I tried to put myself in his position after the onslaught of replies he received .........I would have been very discouraged!
My husband is keen that we go and fortunately we can get there.
It will be the first time I have attended anything like this for Thyroid issues,so can go with an open mind.
You're welcome Marfit. I am a half an hour's bus ride away and will try and attend so may see you there. Another transport option is to take a Capital Connect train to Hampstead Heath station from where it is also just a few minutes' walk up the road to the Royal Free.
For the record: my take on all this is that Levo obviously isn't the answer. It's blindingly, painfully apparent. I'm yet to meet anybody who is happy with the results. I've tried combined T3 and T4, didn't do it for me. I'm just about to begin NDT. I'm keeping an open mind but I suspect that this is going too be the best way forward. That's what everyone assures me.
Levo is the cheap synthetic alternative that is here to keep the masses as quiet as possible. We all know that. It's no great revelation to anyone with a modicum of sense. I'm a newcomer to all this but I'm prepared to take it as far as neccessary. If I have to go to the government about it I will. And if the BTF isn't supportive I will do it without them.
Have you read Tired Thyroid by Barbara Lougheed? I think you would be very interested in her very detailed account of the different treatment options/combinations she has tried.
Thanks for the info...we will go by train too.Good luck with the NDT .I too am giving it a try and my Endo will continue to monitor me if it suits me.I still have a question mark over fillers in T 3 Liothyronine causing joint pain.
I look forward to meeting you and what looks like a lively and interesting 3 hour meeting. Let's hope the trains behave !!
You have my sympathies but let me repeat: I am NOT affiliated with the BTF. Their logo is on the leaflet because they have paid some admin costs towards the event. I did not arrange this, other members of the team did. I have not received a penny personally from them. I have not received a penny from anyone. I am doing this because I want to make a difference. I don't think I've ever met anyone from the BTF.
Everyone seems to be painting the BTF as the devil.
We had another brilliant doctor, who sadly died last year, who treated patients upon symptoms being priority not the TSH and he was hounded over ten years because he didn't follow the 'guidelines' He wasn't an Endocrinologist but was so stubborn too that he wouldn't give up and started the World Thyroid Register. I believe he calculated that the many time he appeared before the GMC was 10million to 1 against any other doctor.
Considering he was referred patients by Endocrinologists and doctors who couldn't diagnose patients with 'mysterious symptoms' and Dr Skinner being a Virologist did as he was taught as a medical student (no blood tests then or levo) and just by taking a history and symptoms he found many were actually hypo and treated them. By word of mouth patients began to see him and the 'BTA etc got annoyed. These illnesses were named ME, CFS, and Fibromyalgia. Not hypothyroidism but whatever was in the NDT used before levo must have had some good effect as it was only after the introduction of blood tests and levo that 'mysterious symptoms gradually appeared'.
So, Dr Skinner invited every Endocrinologist in the UK to a Meeting to discuss the problem of untreated/undertreated patients and also too low a dose of medication. I think around two or three accepted - no-one else - but all withdrew about the day before.
We were devasted by his loss even if we had to travel the length and breadth of the country for a consultation it was worth it.
At one appearance before the GMC there were beautiful red folders containing around 2,500 testimonials from thankful patients. How many doctor/endos would have had a fraction of these?
I'm back again. Dr S wrote to the British Medical Council several times and the statement from the BMJ is the reason he wanted to meet to discuss with the Endocrinologists as I stated above and you will probably find at your Meeting they are still stuck in the past and their views are not scientific at all. They could have arranged a far bigger percentage of patients but NO.:-
Part of a statement in the British Medical Journey - BMJ Volume 315: 29 November 1997.
"Since they complained of a considerable reduction in their quality in their life, which had not been helped with other measures, we decided that it was justifiable to try treating two of them with 100mcg of levothyroxine.
Much to our surprise they reported considerable improvement in conditions, while the result of the thyroid function tests remained within the reference range...
It should be noted that such patients are often given anti-depressants (at worse an expense and a dangerous placebo) without apparent affect.
While the present study suggests there is no scientific justification for this treatment, it is intellectually arrogant to assume that we know everything about the physiology of thyroid secretion and its controlling hormones or the pharmacological effects of exogenous thyroxine. In view of the lack of effective treatment for this group of patients, we believe that further investigation of the effects of thyroxine is justified as Skinner et al proposed."
I'm sure everyone would be interested in hearing how the meeting goes.
Perhaps you could tell everyone who will be on the panel?
I think the other reason (apart from the logo and the link to their website) that people think that this is a BTF organised event, is that you have to email them to book to attend... Just a thought.
No one thinks that the BTF are the devil, this doesn't change the fact that many people have had less than positive experiences when contacting them.
Perhaps you could explain who you and your group are - since the London Thyroid Group seem to still just be the BTF?
I think it's great that you've organised this and do hope you get a good turnout.
It's rather worrying though that questions need to be written in advance and would certainly set off alarm bells in my head.
It would be a good idea to divulge beforehand who the 'specially selected panel' are.
Please don't take offence at some of the posts here, cynicism comes from the nonsense that many of us have endured from the medical profession whilst leaving us ill.
I hope the event goes well. Unfortunately, I can't make it (it is a bit short notice and I don't live in London).
You may be aware of the E Petition (link below) recommending research into Natural Desiccated Thyroid and T3 treatment for thyroid disease. You may want to raise / publicise this during the event?
I was on T4 for many years and unfortunately the last 15 yrs have been v difficult. Thankfully, through my own research I changed to NDT and T3. I had zero help from the NHS I'm now on the road to recovery (I still have to import my meds as my GP refuses to prescribe them, even though my Prof Endo has recommended them).
Unfortunately, I'm not the only one. There are approx. 300,00 people in the UK who are suffering unnecessarily as they have either been misdiagnosed, poorly treated and/or not provided with the appropriate meds. In my case it was all 3.
Well all I can say is that it would be great if you could all come along. I'm asking you to have a little faith. I'm not here to side with anybody for political reasons. I just want people like myself – and you – to have a chance of feeling better. Although the way I feel now is that this may be the first and last time I ever get involved with organising an event such as this. You are not the only source of negativity that I have encountered. Frankly I'm amazed.
Truth42......... You're amazed.....I'm appalled.
Yes I can understand how bitter some can feel for what they and their families have suffered over decades,including my own mother who nearly died the night she gave birth to me in the middle of the London blitz and suffered until she was 60 years old before being diagnosed and treated and then only because her new GP had studied and recognised her condition.We who are here searching on this site have also suffered or else we wouldn't be here.
I too have encountered negativity when I tried to promote the E-gov petition by getting leaflets printed to hand out to people to hopefully support and sign........first comment I got when a friend saw the symptoms was ....we all get aches and pains and feel tired .....that's "NORMAL"........I tell you,every time my husband and I hear that word we just smile at each other! Remind me if we meet to give you a copy of my thyroid poem.
Anyway,negativity withstanding,we're still hoping the future can be made brighter for hypothyroid patients and we are looking forward to next Saturday.
your question will probably have been missed as you have tagged it onto the end of another post. It would be better to start a new Question/post yourself as you will get a lot more replies.
Your T4 should be high in the range to feel well, you can ask for a print out of your results from your doctors surgery which should have the ranges as well as where you fall with in them.
You can also find a lot of information at Thyroid UKs website (below)
Very quickly: the event went well. Questions were asked and answered. The BTF panelists spoke very objectively about NDT and did not advocate levothyroxine as the be all and end all. Everyone went home happy.
Except me.
The negativity I encountered on this board was merely the tip of the iceberg. In the run up to the event I received personal abuse on the FB group I run, I got negative emails from BTF members as well as non-BTF members. It really got on my tits. As a result of this I'm packing it in. In the year or so since I was diagnosed I've spent far too much of my time working to raise awareness and – believe it or not – trying to help fellow sufferers. I'm not doing it anymore. I'm going to concentrate on looking after my own health.
Truth42, the negativity was directed at the BTF, not at you personally. I'm sorry it has put you off raising awareness in the future and I'm glad the event you put so mch effort into went well
I'm so sorry that it didn't go well, and that you have had negativity from some.
I admire that you tried, I do feel that a lot of the negativity you encountered was due to years of frustration and feeling unwell for so long with no one taking us/them seriously, and it just so happened that the mere mention of BFT was like a red rag to a bull. I don't think it was aimed at you personally
I know it can take an awful lot out of one, fighting to get the right help and treatment especially when your not feeling 100 percent. I hope you improve in your health, and that you will still pop in to visit from time to time, as there is so much help and information we can all give each other.
I am posting a link to you and Rod about the meeting, ( just for info), I don't know how this compares to your interpretation
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