Light, air, space, time, breath

I haven't blogged on here for ages. I've been mostly quite well, that's why! So there is light at the end of the tunnel for anyone feeling rotten with hypothyroidism. I've got various projects on the go these days so very little time for thyroid stuff but I still intend to post on here from time to time and in particular I want to get closer to the hypothyroid care strategy project which BTF are undertaking and where I see lots of opportunities to make things better for thyroid patients. I feel I've learned a lot on my journey and believe those lessons can be put to some use to help others - as and when I have time around the edges of the rest of my life.

There was a point when my work with the London Group and handling telephone support calls for BTF was taking up a huge amount of my life. My husband was alternately proud of what I was doing and horrified that I was doing so much and not getting paid for it! As I slowly got back to a degree of reasonable  health it was a bit like having the structure of a job and I really appreciated having the responsibility for something that felt important and where I felt I could be of some use. But it got to the stage where it was taking up more hours than I could justify so I had to take a big step back.

I am so delighted and thankful that the group is ongoing and so thankful to the Team for continuing with it. And much as I very much enjoyed talking to other thyroid patients on the phone, as a support contact for the charity, I'm very relieved not to be constantly having those kinds of conversations any more as they are emotionally quite draining, especially when I was effectively on call all the time and listed as the main contact for the whole of London, the most densely populated part of the country!

I'm very happy to be able to flag up to you that the group have now announced a whole series of dates for meetings in London this year, which is brilliant. You can get details on the link at the top right of the side navigation, or here. Precious space and time for thyroid patients to come together, support each other, learn about our conditions and what we can do to help ourselves-and just have a nice time with good people who have some insight into what we're all going through.

I can't make the Feb meeting but will be at the one in March. I hope to see some of you there.

Signing off for now with gratitude to you for reading and being with me on my thyroid journey. It has meant the world to be able to connect with so many other people going through similar experiences and I intend to stay connected and continue to share both my own experiences and anything else I think might be of use to others with hypothyroidism. Because it's a tough old game and we all need all the support and reliable info we can get - right!

One thing I will do this year is write up the notes from the various talks we've had that I haven't had a chance to report back on fully yet.  If there's one in particular you'd like me to do first let  me know.

Sending smiles to you and yours.

And a nice beach photo taken this chilly February morning here in Broadstairs. I won't say anything about how cold it was but doesn't it look pretty!

Viking  Bay, just 1 hour 22 mins from St Pancras on HS1 

BTF info for 13th sept 2014 meetiing

This article wasn't originally publishing properly, for some reason all the spacing was lost when it went live. I've now sorted this out so hopefully it will be easier to read:

I was on the panel at the 13th September BTF London Group meeting and am sharing my notes on BTF Activity for those unable to attend the meeting, below. It was a really good meeting. We followed a different format from anything we'd done before and I was quite anxious in advance about how it might go, but it was really a big success, as all the group's previous events have been. Well done to the group for creating this new Question Time format and for putting together a really good panel.

Even with three hours for the meeting we didn't quite manage to get through all the pre-submitted questions but we did most of them and as well as sharing what I know I learned a few new things as well and really enjoyed the day.

The event was filmed so the footage should be available on youtube soon. I'll post a link when I have it.

Meantime, the following may be of interest to anyone wondering what BTF does for thyroid patients. This info was sent to me from BTF HQ ahead of the meeting.  Much more info, of course, is on the charity's website .

 "Contents

1.  General info from BTF
2.  More info on the Hypthyroid Care Strategy Project 
3.  General info from BTF

 1/ In response to concern about lack of knowledge of GPs (and other health professionals) about diagnosis and treatment of thyroid disorders, we are working at improving awareness about all thyroid disorders amongst health professionals at all levels, including GPs. Below is a brief update about what the BTF is doing to raise awareness and improve understanding of thyroid disorders, including informing health professionals about the patient’s perspective:

Children

•  The BTF conference for children with congenital hypothyroidism (CHT) and their parents: we are working with doctors/nurses from the Leeds General Infirmary (who have already changed their practices as a result) and together are producing information on CHT and parent experiences at diagnosis which will be presented at a specialist nurses' session at the British Society of Paediatric Endocrinology and Diabetes (BSPED) meeting in November. See also BTF News 86, p 1. 

Thyroid Eye Disease

•  See executive report www.btf-thyroid.org/images/stories/pdf/TEAMeD_First_Report_Executive_Summary_4_page.pdf which describes the work being done to raise awareness amongst health professionals. 
•  Two-day meeting in Newcastle, May 2014: Thyroid Eye Disease in the 21st century (attended by the public, patients, pupils and international experts on thyroid eye disease), see: http://www.btf-thyroid.org/index.php/campaigns/thyroid-eye-disease/newcastle-thyroid-eye-disease-meeting

Pregnancy/Fertility

•  During International Thyroid Awareness Week (http://thyroidweek.org/en/) we issued a press release about fertility. 
• Working with a GP on a potential article on hypothyroidism and pregnancy

Thyroid Cancer

•  Short film on patient experiences of thyroid cancer – due for release in September 
• Thyroid Cancer booklet to be updated 

Hyperthyroidism

• Short film on patient experiences of hyperthyroidism – due for release in September 
• Invited to provide patient representation on working groups – Apitope (see BTF News 85, p 11) 

Hypothyroidism

• Short film on patient experiences of hypothyroidism – due for release in September.
• Worked with a GP who approached us to update a GP training module that appeared in Pulse on line – the most widely used training module amongst GPs; see: http://pulse-learning.co.uk/clinical-modules/diabetes-and-endocrinology/hypothyroidism-case-base-module 
• Investigating research opportunities 
• Produced a poster and leaflet with a list of hypothyroid symptoms which were displayed in GP surgeries in various parts of the country earlier in the year. This was done on a pro-bono basis by the company involved, and resulted in an increase in calls to BTF HQ and an increase in membership from the parts of the country where the poster/leaflets were displayed, plus requests from GP practices for further information from BTF. There has also been a 250% increase in hits to the BTF website in this period compared with the same period last year. The company has recently informed us that they have continued our campaign and increased the number of surgery sites; the information will be available until at least the end of November. 
• Endorsed the Thyroid Federation International (TFI) statement: http://www.thyroid-fed.org/tfi-wp/news/alternative-substitution-tfi-statement-2014/ 
• The 2015 BTF Research Award will be specifically for a study into hypothyroidism 
• We are in the process of drafting information for GPs and other professionals for the BTF website

General

•  Patients kept informed via our website of changes in supplies in medication 
• BTF Patient literature is being revised, taking into account updated information 
• There is an increase in medical queries; and this raises awareness amongst the medics of matters that concern patients and gaps in diagnosis/treatment 
• We set up a survey via our website to find out how patients have accessed the BTF and what services they would like from the BTF; we have 300 responses to date. The survey is on-going.
• BTF News 78, pp 8-10 featured an article on ‘Challenges of Hypothyroidism’ which you may find useful – interviews with endocrinologists conducted by Judith. 

 I hope all the above information helps with the meeting. There are many strands to our hypo project and we are still in the planning stage, which involves discussion with a wide range of people. As far as GP awareness is concerned we want to raise awareness of all thyroid disorders.

Re the Hashimoto’s search issue on the BTF site, I can see there is a problem with the apostrophe (a ‘\’ appears in the search box) and thus the word cannot be found as the word ‘Hashimoto\’s’ does not exist on the website; similarly ‘Hashimotos’ does not exist. But if you type in ‘Hashimoto’ or ‘hashimoto’ you will get results. I have passed on the apostrophe issue to our webmaster. Thanks for letting me know. "

Here is some Further info on key activities related to the hypothyroid care strategy with approximate dates. a number of them are already mentioned above but the below information came from a different person at BTF head office:

"Hypothyroid Care Strategy activities summary

•  2013 May Meeting with commercial firm about free distribution of targeted info in GP surgeries across UK Poster and simple leaflet design initiated 
• July Meeting with mid-career GPs to gauge their interest in and knowledge of hypothyroidism. They wanted a simple summary preferably issued by NICE and a CPD module. 
• Sep-> Investigation of CPD options for GPs – RCGP too expensive, PULSE already had module reviewed by M Vanderpump. 
• Dec Presentation by VR, JH and JT to BTA annual meeting about proposed hypo strategy – they endorsed targeting of GPs via CPD 2014 
• Jan-> Involvement in writing proposal for large scale clinical research project focused on hypo patients with persistent symptoms – awaiting outcome 
• Feb Lead article in BTF News about hypo strategy Piloting of enquiry forms to capture data about hypo patients 
• April Attendance at BSA seminar in Newcastle on qualitative non-clinical health research 
• May Leaflets finally distributed to GP surgeries initially until end Aug Analysis shows clustering of firm’s boards in W Midlands and Wales – subsequent monitoring show rise in enquiries, especially from these regions. Now extended to Nov. Simon Pearce and Scott Wilkes advising on strategy. 
• Jun-> Commissioning of Dr Tran article for PULSE – M Vanderpump updated module currently now available free 
• Aug Feedback to pharmaceutical company about patient experiences with levothyroxine."

Thyroid Controversial Topics

Just heard the news - Mr John Lynn, leading Endocrine Surgeon, has chosen the theme for his talk to our group this month - and it's a scorcher:

Thyroid Controversial Topics.

I'ts time for Auntie Margaret's disco ball, isn't it.....

click to play 
Auntie Margaret's disco ball 

Well I couldn't be more pleased. Looking forward to welcoming Mr Lynn to our group and to hearing his talk.

I've said it endlessly on here and it makes my blood boil, frankly that there is so much dodgy information out there on t'net, about thyroid disease (yes and about other illnesses and stuff in general too, I know).  So many people who are either misguided or seeking to profit from people who are unwell. Of course, also so many unanswered questions, so many grey areas, so much that is simply not known because sufficient research hasn't been done, or 100% proven and the whole thing is so complicated. The more I learn, the more I realise I don't know, even though I know quite a bit now. 

It will be refreshing to hear a clinician tackle this issue head on and give us the low down, as he sees it, on some of the controversies that do the rounds and that can be so confusing for patients, as well as sometimes dangerous and expensive for us. 

Oh I can't wait! 

Are you coming? You can book your place and learn more about our speaker: here 

Onwards, upwards, sideways....???

So great news, we had a brilliant meeting at the House of Lords last month and the British Thyroid Foundation London Group will continue! I am no longer the coordinator.  Phewweww, a relief. The vast majority of the stuff I've been doing has been divvied up and shared and my only residual responsibility is to chair the group and support those fabulous individuals who have taken stuff on. Call me a chair.

this artwork, gifted to me in 2008/9 at a Landmark Education event
is about how we relate to reality.

One day I'll explain the artwork above. For now, it just tickles me to include it.

Our next London thyroid patient information event meeting is 10th May 2014. Our speaker is Mr John Lynn, a very eminent endocrine surgeon.  He sounds great. Details including how to book a place are on this link.

I'm beyond grateful to all those who have stepped up to take on different aspects of keeping the group going. You know who you are. Let me know if I can add a public acknowledgement here - perhaps a link to your blogs and / or twitter pages....?

I think you'll be hearing a lot more from us in months to come.

What next? What can I do that will be most powerful?

Thinking about some of the thyroid related things I would like to do once I've stopped running the BTF London Group.

While I need to move on with my life and don't want to be forever harping on about all things thyroid, I still feel passionately that it's important to raise awareness of thyroid disease and things that people can do to help themselves, also to raise standards of care for thyroid patients who are currently not always being treated consistently or well.  And while I salute BTF for all that they do, I feel there is scope for a great deal more to be done and as they are so under resourced and seemingly so slow to get themselves resourced up to do more, well it just seems like there's a glaring gap that needs to be addressed, so maybe I will give myself a project....

Will I:

• Write a book? 
• Pitch articles to magazines and periodicals?
• Pitch talks to groups of medical professionals?
• develop this blog as more of a resource?
• collaborate with a science writer to provide more articles on latest scientific research?
• Seek to influence Mind (the UK's leading mental health charity) to start to provide more information and support for thyroid patients, because they currently don't think it falls within their remit?

Ouch, so many possibilities, I could in fact quite easily spend my entire life on this stuff. And that's not going to happen. So I have some thinking to do and some decisions to make, what to do, what not to do, where to focus.

In the shorter term I am off to the House of Lords next week, to meet with my fellow BTF London Team of volunteers, kindly hosted by our wonderful patron, Lord Borwick of Hawkshead, who is also taking us on a tour of the House which will be exciting.

We will be seeking to find a way to keep the London Group going with me not running it any more. I am excited that nine enthusiastic and wonderful people are coming to that meeting, between them I'm sure they'll find a way to prevent the group from folding. The challenge is that everyone is either not very well, or super busy, or both. But the plan is to try and split the tasks so the load is shared, and perhaps to do things differently in future so that the whole thing can maybe be simplified and become less onerous to do.  

The House of Lords, Westminster

It's a little  ironic, to be going to such a seat of established power as the House of Lords and at the same time trying to decide what subsequent action I can take that will be most powerful in the face of what seems like an overwhelming challenge - how to make things better for hard to treat thyroid patients in this country.  I hope that this meeting can be a catalyst for meaningful change, somehow, someway. It signifies me moving forward powerfully into the world. Giving up the admin headache of running the group and freeing myself up to do something bigger.

Of course I may decide to leave thyroid things alone for a bit. I have a lot of other things going on in my life. Very many competing priorities. I may decide to focus on something else entirely. Perhaps my letting go of the group is also time to let go of the wider challenge and trust that other people are going to be able to bring about the changes that need to happen.  The BTF Hypothyroid Care Strategy Project is underway now after all, and I was one of the people who pushed for that to begin.

One of the many wonderful friends that I have connected with on this journey now seems to have entirely moved on and is pioneering an important campaign for muslim feminists. Her example inspires me. I feel I need some space to think and breath and the answer, to the question of what I want to do next, will come to me.

Hope

Thyroid Patient Voices, Feb 2014, London event write up

Most of the attendees at the Feb 2014, BTF London Group meeting
thanks to Darren Holman for taking this picture

Thirty of us attended the British Thyroid Foundation Patients Voices meeting at the Royal Free in Hampstead this weekend.  It was amazing, as these meetings always are. Sadly it may be my last one. I told BTF in January that I will be standing down as London Coordinator after this meeting and since then I’ve been trying to arrange for another coordinator to carry it on. Though there are lots of other London volunteers now, who have got involved in the group since it was set up, no one else has thus far said they feel confident to take over running things.  And I’m not surprised, it’s a lot of work, which is why I’m standing down.  I’ve been doing it for three years now and it’s time to move on. I’ll continue with this blog and if the London Group continues I expect I’ll continue to have some involvement and I certainly anticipate staying in touch with the many wonderful friends I’ve made. I hope there may be other ways I can support BTF. But enough is enough.  Being a local coordinator, especially for our capital city, well it’s a big job. I can’t continue to justify the amount of my time it takes.

I’ll be meeting soon with the other London based volunteers to see what we can come up with in terms of a plan for the future.  Watch this space for updates. At the moment we have dates in the diary with the Royal Free for future meetings to take place in May, Sept and November (details on BTF website) so I do hope those meetings will go ahead. Time will tell.

On Saturday everyone had a chance to say a bit about themselves and their journey with thyroid disease to date. Some were newly diagnosed and slightly anxious, seeking information, what to expect and what could they do to help themselves. Some had been ill a long time and had some bad experiences but were now at a point when they were relatively well, a couple were very disillusioned with the medical profession but most, it seemed to me, had found doctors they could work with, who were supportive, even though they may also have had some previously who were not very good. Some people there were really struggling. I think we all found it helpful to be together and share our experiences.

Judith Taylor, chair of trustees for BTF and also the editor of the BTF newsletter and thyroid cancer booklet etc, so a very knowledgeable lady, who told her personal story at one of our previous meetings, came along, which was great. Although we didn’t have an expert speaker for this event it was good to be able to refer some questions to Judith who knows so much.  

We like the Patients Voices events as much as the Information Events, it’s good just to be able to talk to each other.

The key issues that came out of our first group discussion and were identified as subjects for further exploration, in smaller groups after the break, were:

1.     Managing symptoms (lifestyle and diet, etc)

2.     Getting the most out of our doctors

3.     Psychological Wellbeing

4.     Having a Career with Thyroid Disease 

Each group then fed back their key insights and issues to the group as a whole.

One interesting action point that came out was a suggestion to BTF to develop a leaflet for employers to help them understand thyroid disease and how they can support employees with a thyroid disorder. One of the attendees is an employment lawyer who deals with disability law and she and Judith are going to take this idea forward which I think is a great initiative and many members welcomed the idea enthusiastically.

It was also interesting to note that many attendees had quite high powered jobs, as I did too, once upon a time.  Hence the discussion group we created about having a career with thyroid disease – this was a major concern for many of us who felt our capacities to perform somewhat diminished and find ourselves sometimes struggling to manage our work lives. I worry often about the millions of thyroid patients who are perhaps less naturally dynamic than this self selected and very proactive group who have all sought and found help for ourselves – and yet are still often in difficulties. I do feel the NHS – or someone - should be doing more to provide these sorts of groups more proactively to a wider group.  I would love to be making this happen but I have to draw a line under how much of myself I am prepared to give.

The comment I kept hearing – and I could identify with, particularly harking back to when I was very unwell -  was “I’m so glad to hear I am not the only one having X or Y or Z experience/symptom and now I know I’m not going mad!”  Being able to meet and chat with other thyroid patients was just wonderful, as it always is.

Everyone really enjoyed the discussion groups. It would have been good to have had more time, but running an event like this is tiring so I have always limited them to half a day and I think that’s been the right thing to do, for my own and the other volunteers’ wellbeing.

Anyway. I’m happy that we had another good event. Thanks to all who came, particularly those who helped make it happen.   Who knows what will happen next with this group. Hopefully we can find a way for it to continue.

two steps forward, one step back...

I'm starting to feel like I'm doing a little dance. Two steps forward, one step back, you know the one.

I put on my (ancient) dancing shoes and.....

I saw my new doctor on Friday. He seems very nice. What a relief.

He thinks I might be anemic again.  Blood test done, awaiting results of that, full blood panel and thyroid function test, which is due again around now.  I'm  hoping that somewhere in these test results will be some clue as to what to do next... Less thyroxine? More? Iron tablets? Something else?

Because I'm tired, so tired, again. And it feels like I've felt like this a lot of this year which is passing me by in a bit of a blur. It's now October 2013. I was diagnosed August 2009.

My old doctor said that quite often people with hypothyroidism do not find their symptoms go away after diagnosis. She apologised that I had been told I could expect to feel well once treatment is optimised, she said the sad truth is that may not happen.

Well she's in the blummin bin as far as I'm concerned.  I won't be seeing her again, not because she said that but for all the other reasons already shared in previous posts. But I can't help but wonder if perhaps she was speaking the truth there. Is there perhaps not going to be a return to "full health". Do I just have to accept that my energy levels and cognitive function will be for ever a bit under par now?  Or was her saying that, just one more sign that she is in fact an uncaring and unsympathetic GP who does not take enough care of patients with chronic health challenges and I am better off not having her as my doctor anymore, because she is clearly not going to be much use to me with an attitude like that?

I have no idea.

I got an email from one of my fellow BTF London Group volunteers today. She said "the more I know the more I realise I don't know". Her and me both.

The Scottish Thyroid Petition ladies seem to be making some progress getting the Scottish Parliament to take some notice of the plight of those thyroid patients who are not easily returned to good health.  I'm impressed with their energy and tenacity, still have not got my head round all the science they are putting forward. I find it complicated. Still I feel their efforts are helping raise awareness amongst policy makers and health professionals and I think that's a good thing.

BTF also appear to be making progress with their hypothyroid care strategy project and I must speak to the lady leading that soon, to see  how/if I can help. Their approach sounds thorough and promising.

Our next London Group event is in a couple of weeks. There's a load of stuff to do to prepare for it. We haven't yet planned any events for 2014. I'm wondering if I really want to continue after the November meeting. I value the group but there's so much involved in making it happen. I wonder if I should be shifting my focus.

I was invited to speak on a panel at an event for Doctors developing their use of information technology. I had to decline. It was the Saturday after the above event. I will likely be tired. I need to take care of me. A shame though. I'd have liked to have participated. But I can't do everything.  I have to accept that.

I've had two long calls with people this week with tricky thyroid related health challenges and while I was able to help a bit by chatting to them and sharing my experiences I felt a bit overwhelmed with the responsibility and in both cases they sounded like  they really needed specialist help from an endocrinologist which they are struggling to get on the NHS. I feel a bit like Canute in the face of the ocean. So many people who need help and support and seemingly so little structure in our healthcare system to provide it things do not go as they perhaps should at GP level.

Hey ho.

I did manage to go dancing this week, that was fun. I was invited to a lovely charity do for Children in Need, because I'm managing a fundraising partnership that will hopefully raise a lot of money for them and some other good causes next year. It was inspiring to hear about some of the work they are doing, there were lots of great acts, a lovely dinner and thanks to a coffee and two chocolate truffles at the end of the meal I had energy to dance to Billy Ocean who sounded as fresh and upbeat as ever at the end of the night! A thoroughly uplifting evening.

So I guess I'm pondering my options at the moment.  Wondering what my next steps will be on this fascinating journey I'm on.  Lots to think about, meanwhile I keep dancing.

Billy Ocean, Pudsey Bear, Children in Need, Evening with the Stars, 2013

Home again and reflecting on another Information Event

What an interesting event.

left-right: Emma Thomas, Lorraine Williams, Mr Fausto Palazzo (and in background slide, Alaska Blue, Emma's gorgeous and beloved rescue sled dog, who featured in her talk, as a great source of support and inspiration through her illness)

Thanks to all who came along and to all who helped out and to our speakers and to the Royal Free for hosting us and the great catering team who did our refreshments and to those who have sent lovely feedback afterwards.

One person texted me yesterday to say:

“thank you for working so hard to organise such an enthralling lecture.”  

 I love these meetings. So much work goes into them but it is so worth it.

We learn such a lot and it is so good to meet and chat to other thyroid patients.

Thyroid surgery is not actually particularly relevant for me to know about. As someone with an underactive thyroid, as opposed to thyroid cancer, Graves disease (overactive thyroid disease) or a very enlarged goitre growing down into my chest, I won’t ever need thyroid surgery, unless something highly unexpected happens sometime down the line.

But I still enjoyed learning about it from eminent Consultant Endocrine Surgeon, Fausto Palazzo. And I enjoyed hearing from patient, Emma Thomas, who had her surgery more than 20 years ago, when she was just 21, even though she actually had a bad experience with complications, her story was inspiring as she has learned so much about how to manage the condition surgery left her with, hypoparathyroidism. And many of her lessons were relevant to anyone with a chronic health condition who wants to take responsibility for being as well as they can be.

We had been planning to have a third speaker, Louise Davies was going to give a talk on how yoga can be beneficial for people with thyroid disease, but I was concerned our programme was over full and our speaker was concerned about timings as she had to be somewhere else straight after our meeting, so we agreed to rearrange her for a future date (tbc) and we had a short relaxation session instead. That was lovely too. We’ve done relaxation sessions at previous Patient Voices events but this was the first time we’ve done it at an info event and it really worked beautifully. More of this in future I think. 

We also shared photos of our summer activities – the London 10K, Jill Liddington’s walk from Yorkshire to London and the London Group summer walk from Broadstairs to Ramsgate.  Some of our group had also been to a follow up session with the researchers at Imperial who wanted to canvas the views of thyroid patients on changes to how data is being used in the NHS.I hadn’t realised how busy we’d been till I stopped to pull all the information together.

In a couple of weeks BTF has 30 walkers taking  part in the Carrot Walk in London (as well as more walkers at events in Birmingham and Glasgow) organised by the charity Fight for Sight. And next year there’s going to be a special meeting in Leeds for parents, carers and children with thyroid disease. So we promoted both of those upcoming events too.

We finished with another epic Q&A session.

I’ve a lot to write up. And donations to bank. People as ever were very generous.

   

And I’m quite knackered, it’s a 150 mile round trip for me to get back to London these days and it’s a tiring day as you can imagine. But it’s all good. I’ll post again soon with write ups of the talks and some of the Q&As. 

If you came to the meeting and would like to share any comments on here please do, I seem to be very low on comments on these days though I know lots of you are reading the blog, please don't be shy - all comments are warmly welcomed! 

Thyroid surgery, London patient event 7th Sept 2013 - info

The London group of the British Thyroid Foundation (BTF), a national patient charity, is organising an event for thyroid patients and people with an interest in thyroid disorders at the Royal Free Hospital, London on Saturday, 7^th September.

Leading Consultant Endocrine Surgeon, Mr Fausto Palazzo, he will be talking about thyroid surgery and answering questions on all aspects of thyroid health.  

Mr Fausto Palazzo, Consultant Endocrine Surgeon, see bio below

The event will also be an opportunity for patients to share their experiences and connect with each other.

Thyroid disease is very common and usually easily treated - one in 20 people in the UK have a thyroid disorder - yet it is largely a hidden disease and some cases can have a devastating impact on people’s lives. 

Thyroid surgery is used in managing several disorders of the thyroid gland and there are several different kinds of surgery. Complications are rare and usually treatable but can be significant. To avoid complications, thyroid surgery should always be performed by an experienced surgeon who regularly performs thyroid operations.

Thyroid disease will be relevant to many of your readers and a real problem for some of them, we would be thrilled if you could write about our event to help reach out to those who could benefit from it.

Where and when

The event will take place on Saturday, 7 September, from 10am to 1pm, in the Sir William Wells Atrium, Royal Free Hospital.

For more information or to book a place, email lorrainewilliams@btf-thyroid.org.

Refreshments will be provided. Donations will be welcomed, with a suggested minimum of £3 per person, to help cover the costs of the event.

 Notes:

Mr Fausto Palazzo is a Consultant Endocrine Surgeon at Hammersmith Hospital and Honorary Senior Lecturer at Imperial College London where he is Clinical Lead for Endocrine Surgery. He trained in general surgery in London and in endocrine surgery in Oxford, Sydney and Marseille. He has one of the UK's largest practices in thyroid, parathyroid and adrenal surgery and in 2012 performed over 350 procedures including 160 parathyroidectomies and 40 laparoscopic or retroperitoneoscopic adrenalectomies. His specialist interest is thyroid cancer, re-operative parathyroid surgery and minimally invasive endocrine surgery. He teaches on national and international courses and has published extensively on all aspects of endocrine disease and surgery. 

The British Thyroid Foundation (BTF) is a national patient support charity dedicated to supporting people with thyroid disorders and helping their families and people around them to understand the condition. It has been established for 21 years and works with medical professionals from the British Thyroid Association and the British Association of Endocrine and Thyroid Surgeons. Website www.btf-thyroid.org

The BTF London group was launched in 2011 and meets around five times a year. We usually get around 40 attendees and feedback on all events so far has been mostly very enthusiastic.

The Royal Free Hospital is six minutes walk from Belsize Park underground station, 14 minutes from Hampstead underground station, and just four minutes walk from Hampstead Heath railway station. The meeting will be held in The Atrium which will be clearly signposted from the main entrance. Parking space is extremely limited in the local area so attendees are encouraged to use public transport.

You are warmly invited to attend this event, just be sure to email me to book your place in advance. 

The next event after this one is 2nd November, on nutritional medicine and thyroid disorders, with speakers from the University of Surrey MSc in Nutritional Medicine. 

Our walk, in pictures, with a folkie flavour...

This year's BTF London Group Big Summer Walk for British Thyroid Foundation coincided with Broadstairs Folk Week.... 

The hooden horse, emblem of Broadstairs Folk Week 

Since I moved to Broadstairs in 2011 the group have initiated a tradition that each summer a few members come to see me and we do a walk to raise money for the charity, from Broadstairs to Ramsgate and back, along with anyone else who wants to join us. Let me know if you'd like to take part next year.

It's a beautiful stroll. Not too taxing and mostly flat, we feel it's  important to have an event that people who may not be feeling very well can still take part in. In total the distance is about 8km and the route allows for a pleasant break in Ramsgate Royal Marina, where we treated ourselves to fish and chips, coffee and ice cream, to fuel our walk back!

With huge thanks to Anna, Linda and Giovanni who took part with me. Here is our story in pictures:

setting of from Pierremont Park, l-r: Anna, Giovanni, Linda, Lorraine

on the promenade in Broadstairs 

Broadstairs folk week performers

above Viking Bay, the main beach in Broadstairs

Linda and Giovanni with Viking Bay in the background

arriving at Ramsgate Royal Marina

Linda and Anna with Ramsgate Royal Marina in the background

Linda with Ramsgate main beach in the background

Anna enjoying a coffee on the Royal Harbour Brasserie Terrace

Linda and Anna on the clifftops

posing with the friendly  Invicta Morris Dancers,
with many thanks to them for this picture!

Finally - here is a fun video of the start of the Broadstairs Folk Week parade, which began shortly after we arrived back in the town. A wonderful finale to our day! 

We had a wonderful day, made all the more special by the celebratory atmosphere in the town for the Folk Week Festival.

Our aim was to raise £300 for British Thyroid Foundation and we have almost achieved that already. It's not too late to sponsor us if you'd like to. Our Just Giving fundraising page is here.

Or you can click the "sponsor me" button at the top of this page.

We are very grateful for all donations and all  money goes straight to the British Thyroid Foundation to enable them to do more to help people with thyroid disorders.

Thanks for sharing our walk by reading this post. Maybe next year you'd like to join us.

Waving and smiling to you. :)

A somewhat smaller Big Summer Walk

After meeting Jill Liddington the other day, at the end of her epic trek from Yorkshire to London in aid of the British Thyroid Foundation, I almost hesitate to mention the rather littler Big Summer Walk I am organising and taking part in this weekend, from Broadstairs to Ramsgate.  But mention it I must, how else would you know about it, or be able to get involved?

view of Viking Bay at Broadstairs, our start point

Members of the London Group did this walk with me last year and we raised over £900 which astonished all of us and we were so grateful for that wonderful support. It's amazing how generous people can be when they see you doing something that matters to you.

This year we are doing the same walk on 10th August, setting off around 1pm from Viking Bay, we want to make this a regular annual thing.

If you're in the area and you'd like to join us, please feel free to get in touch, it should be another lovely day out and this year coincides with Broadstairs Folk week - an amazing festival with Morris Dancers, Hooden Horses and all sorts cavorting around the town!

I'll post a write up and some pictures afterwards.

In the meantime here's a link to our fundraising page, just incase you feel inspired to make a small donation or leave a cheering message. http://www.justgiving.com/BTFLondonTeamWalk.

All donations will be received with massive gratitude and every penny raised will go straight to BTF to support their work for thyroid patients.

Ramsgate Royal Marina, our end point

The Big Summer Walk campaign is something anyone can get involved with, why not organise your own walk, it's a wonderful way to spend time with friends, get some exercise and raise money for this little charity that does so much and needs all our help to be able to do even more for thyroid patients. See the BTF website for more info.

200 miles later...

This weekend I met an inspirational lady.

Jill Liddington has just walked over 200 miles to raise awareness of thyroid disorders and fundraise for the British Thyroid Foundation.

Yes, you heard right, 200 miles. From Yorkshire to London.  How amazing is that?!

Along with some of her friends and family and members of the British Thyroid Foundation London Support Group, I met her at Granary Square, St Pancras, this Sunday, on completion of her epic challenge.

Though footsore, Jill was in great spirits, every step of the way she had been accompanied by friends, family and supporters who popped up along the route to walk with her at different stages. I think the whole thing has been quite an incredible experience for her, she spoke very movingly about how touched she has been by everyone's support and she has already raised over £2000 for the charity, with donations still coming in.

The photo above shows her at the finish line, along with those who had walked the last leg with her, including Karen George of the London Group and her partner, Rich -  and some young relatives who brought a special home made banner.  Well done Jill!

It's not too late to make a donation and leave a cheering message on Jill's fundraising page. Every penny raised will go to British Thyroid Foundation to help them do more for thyroid patients.

Click to visit Jill Liddington's Just Giving Page

Let's talk about thyroid patient petitions....

Update to this post: 
The below post talks about two petitions. I've since discovered that the first of the two petitions mentioned is actually completely different from the one I thought I was writing about. I am very embarrassed.  I'll have to go looking for the original petition and add a link to it when I can track it down. 
Since this post was written the authors of the first petition have been in touch and we have been exchanging views. I am very grateful to them for being in communication.
I'm going to have to do another post now I think, with my thoughts on this particular petition - or maybe it will be better to add a long comment to this post. I'll think it through and do one of those two things as soon as I can.

For now I felt it was important to flag up my error and apologise profusely to the Lorraine Cleaver, Sandra Whyte and Marian Dyer, authors of the petition to the Scottish Parliament, for getting them confused with a petition it seems they actually have no involvement with.  

Here is the rest of this post:

Recently I've seen two thyroid patient petitions in the UK, there may be more circulating. These petitions indicate to me that there are a significant number of thyroid patients here who are terribly unhappy with the treatment they are getting from their doctors. I knew that was the case before seeing these petitions. It's a crying shame. Something needs to be done. I believe that quality and consistency of care for hard to treat hypothyroid patients needs to be addressed urgently. However I don't think these petitions take the right approach and so I deliberately haven't got involved with either of them.

I promised the authors that I would share some thoughts on this blog. It has taken me a while but I'm doing it now. I believe the authors are well meaning and open to other people's points of view. I hope this post might be helpful for them and for anyone else who is interested in thyroid patient care and campaigning.

Some people are unhappy with their doctors, sadly that's a fact. However, I know that there are also lots of great doctors out there - and many patients (thyroid and other) who are very happy with the care they get. That's important to remember. Our precious NHS is under attack, good doctors need our support.

(When I was first diagnosed with hypothyroidism I went on a thyroid chat board seeking support and was instantly told "you will have to battle your doctors, they are idiots" - neither of these things turned out to be true and it was very unhelpful, when I was feeling unwell and vulnerable, to have those negative expectations dumped on me.)

The first of these petitions  is here (this link has been added to this post along with the update note above, to which it relates) - and a whole load of information on how it is progressing  is on a Facebook group here

The latest petition I am aware of  is here (since the update note above was added, the rest of this blog post now only relates to this latest petition and not to the petition to the Scottish Parliament)

Let me state my position:

1. I am a "hard to treat" autoimmune hypothyroid patient myself and I have had (sometimes continue to have) a very difficult time with my condition.
2. Through this blog and my volunteering work I talk to a lot of other thyroid patients (hypothyroid and other) and the ones I talk to are often having a difficult time and frustrated with the healthcare they are receiving.  That said, I believe it to be true that, statistically, we are not the majority of thyroid patients - because most are easily treated, don't have any problems and so don't have any need to talk about their condition. 
3. I have also spoken to quite a few endocrinologists, both for  my own treatment and because I organise regular meetings in London, where top class endocrinologists come and give talks to groups of patients and answer questions. Without exception I have been impressed with the knowledge and commitment of these doctors and I learn something new from every one of them. Clearly thyroid hormone function  is a vast subject - and the human body as a whole is vaster still. Medical science is amazing. 
4. I believe strongly that for those of us who do not respond quickly and easily to standard treatment for our hypothyroidism, there needs to be a review - and improved quality and consistency - of care, because too many people are getting a raw deal from their GPs who sometimes refuse to refer patients for specialist help - and sadly sometimes specialist help means an endocrinologist who knows a lot about diabetes but is not as knowledgeable as they need to be about difficult thyroid cases - so a referral doesn't always lead to a solution for the patient.  If your blood tests are "normal"yet you still feel ill and your GP cannot help you should be referred to an endocrinologist, if your endocrinologist can't help you I think they should seek the view of another specialist. 
5. I have lobbied the UK's leading charity for thyroid patients (British Thyroid Foundation) about this issue and they have told me they are now undertaking a strategic project to look specifically at Hypothyroid Care. I have high hopes for this project because I am confident in the professionalism of this charity which has been established for over 20 years. I believe they will go about talking with the medical profession in a way that will enable meaningful dialogue and I am certain that change for patients can be achieved via their methods.I hope to have the opportunity to contribute to that project in some way. 

As I understand it, the majority of thyroid patients are easy to treat. A minority are not. We are not talking about an insigificant minority - it may be as many as 20% according to more than one endocrinologist I have spoken to. 

I think that both of these petitions start from the premise that the standard treatment for hypothyroidism is no good, full stop. When it works for so many people, taking this stance just undermines the credibility of the petitioners. 

Both petitions also appear to blame "endocrinology" for poor treatment of hypothyroid patients. This makes no sense. Endocrinology is the discipline which studies and treats the endocrine system, while some endocrinologists are doubtless be better or more knowledgeable than others, and clearly there is a need for more research so that more can be known about our condition, to criticise the profession as a whole is desperately  unhelpful.

There are some private practitioners who appear to target hard to treat hypothyroid patients and promise to treat them differently from mainstream medicine and thereby make them well. I have not personally consulted any of these practitioners, because I do not see them as credible and I have spoken to several people who have consulted them and who have not had good experiences. Having said that I know that some people do have good experiences with these practitioners and that's great for them, I'm not against trying unproven treatments when evidence based medicine has no answers, providing the patient is informed and knows the situation. But when a practitioner puts themselves forward as a guru, claims to have all the answers and says that other doctors are ignorant fools -  I get very suspicious.

I know that much more research is needed in order for the medical profession to know more about hard to treat hypothyroidism and all the specialist doctors I have spoken to freely admit they do not have all the answers. And, perhaps because the science is not conclusive, it seems there is not a consensus within the medical profession about what treatment protocol makes most sense for these patients. Some endocrinologists will trial treatment with T3, combined T3/T4 or indeed Armour (porcine dessicated thyroid gland pills - thanks to the reader who corrected my earlier mistake saying they were bovine), others won't and their reasons, when I've discussed this with them, have actually been compelling. As a patient, my own experience tells me that there is perhaps more to many people's symptoms than just thyroid hormone levels and I'd like to see a more holistic approach being taken. 

I took T3/T4 combined for a while, it seemed to help me at the outset but after a while I went back to thyroxine only and actually felt better. As I've written previously, I now think the key to me feeling well was more about getting the right balance of thyroxine and also addressing other health issues (in my case a Vitamin D deficiency and gluten intolerance). The whole T3 thing now feels like it was a massive diversion and waste of time for me. And I've spoken to many others who have also tried T3 and not got on with it. Granted I know that for some people it does seem to be the only thing that will help them. The doctors I have met who are open to using T3 tend to say that research has not proven it is an effective treatment and there are concerns about it's safety, but with hard to treat patients you often have to go with trial and error to find the best treatment regime for them as individuals - and that's the fact of the matter, life is not perfect, medical science does not know everything.  Good doctors will listen to patients and do their best for them.

As patients we need to work in collaboration with our doctors, with respect for each other and open minds. That is what I'm committed to and I firmly believe that is the only way that makes any sense.  So I didn't sign the first petition and I won't be signing the second and these are my reasons.

Let's discuss.....

Patient Voices on Psychological Wellbeing, May 2013

"I could talk about psychological wellbeing all day on this lovely couch"

The previous post introduced the Patients Voices meeting we held in London on 11th May. This post shares the notes from the breakout discussion group which looked at Psychological Wellbeing with a thyroid condition. 

With many thanks to the participant who has kindly typed these up and included the links to the two articles which help illustrate some of the points the group explored.

Psychological Wellbeing, Discussion Group Notes:

We talked about coping strategies people have for helping manage their psychological wellbeing with thyroid conditions.  

One person has been on anti-depressants for just under 6 months and it has transformed her life.  She did have adverse effects the first couple of weeks but was warned about this by her doctor and stuck with the prescription.  One interesting note is the antidepressant has a warning note it should be not be given to thyroid patients but the doctor is still prescribing the medication. 

A couple of people talked about concerns if long term lack of treatment for thyroid conditions might affect brain function generally.  Some in the group had suffered untreated for years, they think in hindsight. 

Also when the doctor does realise there is an issue with the patient's thyroid, they don't say enough about coping with how people may FEEL with this condition. 

There was a bit of a discussion about the differences people are feeling between overactive and underactive thyroid conditions, but we didn't talk a lot about that, and I don't have any detailed notes about it.

One person talked about her issues with general physical weakness.  She talks a lot to herself to keep her spirits up.  Also she's learned to pace herself to bank her energy.  

Working and raising children is an added stress.  If people have the opportunity to not work, then they can rest more during the day.  Also if you work, you'll try to hide your symptoms from co-workers which is an added stress.

For many, there was a feeling of years wasted.  Too often people compared themselves to others and thought they hadn't accomplished as much.  One person keeps a journal listing anything she does and completes.  She refers to that to help her realise she is getting things done.

I mentioned research I've seen in the past where the human brain is wired to remember negative experiences much more prominantly than positive experiences. The theory is this goes back to caveman days where that memory trait helped people to survive.  One way to combat this bias is to keep a scrap book of positive things you did or experienced. That way you can read that to balance out your memory better.  I can't find the original article anymore, but here's 2 articles on the internet I found just now that indicate similar technique:

Article One - Journaling and sharing can enhance happiness 

Article Two - The memory bias

 Someone mentioned that coping techniques generally for any chronic illness can be useful, so don't just look for articles about thyroid conditions.

Relaxation and exercise are really helpful to people in the discussion group.  Also breathing and meditation were found to be helpful.  Trying to 'be in the moment' was good too.   I mentioned some research I've seen that walking and getting outside in nature is really good for health and mental wellbeing.  There's research indicating the effect of walking can be equivalent to taking antidepressants.  Also a friend of mine and I realised as part of losing weight that the biggest battle with exercise is getting out the door initially.  Once you pass that hurdle you do exercise like walking and you enjoy it - even 5 or 10 minutes is good.  So we thought you have to do whatever you can to facilitate getting out the door - like keep your walking shoes and exercise clothes handy/nearby the door.

Coming back to doctors, people said that doctors generally don't explain enough what could happen with regard to thyroid conditions.  They don't seem to pool knowledge.  Also advice is not holistic - you have to advocate for yourself.

It's also variable how people's conditions are picked up correctly by doctors.  With some patients the doctor figures things out quickly and with others they wait years for the condition to be recognised correctly.  It also makes a big difference if the doctor is supportive. 

There seem to be lots of different opinions amongst different doctors and also lack of follow through by doctors on other related health issues.

When doctors more clearly say what's happening or what to expect with the condition, then the patient feels more psychologically stable because they understand more what is happening to them. 

Sadly  some doctors  don't seem to be concerned about quality of life for patients with thyroid condition.  Also thyroid conditions are not viewed as a major illness. 

Lastly, it was noted that the group on Saturday is really rare and very treasured by attendees.