The Thyroid Trust

Hmmm tis time for another from me. Apologies for somewhat neglecting this little blog recently but I have been busy busy as will become apparent.   I thought it was important to update you my dear blog readers so here goes:

Our group of thyroid patients in London has been offered funding to set up a new charity for thyroid patients. We are delighted and very grateful to our benefactor for the support since our meetings  are so important to us and we can see additional opportunities to do things for people affected by thyroid disorders which we are keen to be able to pursue.

Setting up a new charity is quite a lot of work however. We probably under estimated just how much when we started. But we're getting there!  The last few months have been intense.

We now have a name - The Thyroid Trust - a logo which we all really like - and a new website

Thyroidtrust.org 

And we are on Facebook and Twitter @thyroidtrust

We have been putting together our constitution, board of trustees, policies and registries etc. Mountains of paperwork but very exciting. Good governance is vital. 

We have registered to be stakeholders in the development of new NICE guidelines for managing thyroid disease and have been participating in that process.  Attending the initial scoping meeting and responding to the draft scope document, so far.

I also sent a personal response, about liothyronine, to the NHS consultation on items which should not be routinely prescribed in primary care and I know several of our other members did too, though we didn't manage to compile an organisational response as we  had too many other things going on and it didn't feel necessary as we are at such an early stage in our development. I was thrilled to see how many others connected with this process and particularly delighted with the Patients Association response which you can read here.

Our number one priority is keeping the London meetings going and getting good speakers, since so many people rely on being able to come to these sessions and we feel they are so important.

Our next meeting is this Saturday, details all on the website. If you're in the area, please feel free to come along. If you can't attend perhaps you'd like to spread the word. That would be amazing.

Yesterday the news broke about Concordia and liothyronine and was on all the main media outlets. Read here on the BBC. I am so grateful to all who campaigned determinedly to get this story in to the public domain.  I wasn't able to do much at all except send my own response in to the NHS consultation and speak to a few people about it. But here's the proof that patients have a voice and will not be ignored.  Over 24,000 people signed a petition on this issue and that is incredible. a testament to how the internet empowers us by providing information, connections and a platform to shout loudly about things that matter. I feel optimistic about the future.

Please keep in touch via Thyroid Trust, I'm not sure when I'll next blog on here but I will keep this blog going with posts from time to time of course.

Hope and love to all.

Future meetings

You can find out about our upcoming meetings on the group's website here.

All welcome.

ch ch ch change change

Ah dear friends, today there is some news to impart.

We have a new website for our thyroid patients' peer support group in London - please share far and wide with anyone you know who may wish to come to one of our upcoming meetings - or indeed may like to join us on a lovely seaside walk we are planning in East Kent in the summer. Full details are on the site. The next meeting is 13th May 2017.

Here's the link:

thyroidfriends.weebly.com/

With thanks to the lovely folk at I Heart Guts for allowing me to share the above illustration of one of their cuddly plush thyroid toys - you can buy one of these cute little thyroids directly from their website - they make a great gift for anyone with thyroid issues. 

Our group was established in 2010 and we know it is a lifeline for our members, certainly it is for me. We are excited about our next meeting which will take place on May 13 at Crown Court Church in Covent Garden. We really value the chance to come together and support each other and hear each other's stories. 13 May will also be a chance to plan ahead as we will be discussing how we work together as a Team, what topics to cover in future meetings and what speakers we would like to book for our sessions from July onwards.

There is also another thyroid related event taking place in London on the same day. The British Thyroid Foundation are holding a Children's Conference at the Abbey Centre in Westminster. Anyone who has a child with a thyroid condition may find this event extremely helpful. Find out more on the BTF site - I believe it is free but places must be booked in advance with a refundable deposit payable.  While I'm mentioning that - my friend's daughter, Danielle, was born with congenital hypothyroidism and shared her story on my blog some time back, you may like to read it here, it's very reassuring for anyone concerned about childhood thyroid issues, she is now a healthy young mother herself.

Our group is currently independent, since BTF have brought out some new guidelines for group coordinators which we haven't wanted to sign up to - they required one of us to agree to have our phone number published on their website and in their newsletter and since regular blog readers may recall this was something I agreed to doing some time back and ended up quite overwhelmed with callers from all over London and indeed further afield, none of us was up for doing that.  We are hoping that the charity may reconsider their position in time but for now we will just continue meeting regularly, doing our best to support each other and sharing reliable information (which we will continue to source from BTF) under the new group name, Thyroid Friends.

We are super grateful to all the lovely folks who have encouraged and supported us thus far, including: Thyroid MK,  Voluntary Action Camden, I Heart Guts and World Health Innovation Summit.

Thank you for sharing this news with any friends, family or professionals who may be interested. We look forward to welcoming regular members and newcomers to the May meeting.

And now I'm going to skip off to my jazz singing group followed by a blissful grounding meditation in a wonderful community garden just up the road from me before I do some work this afternoon. Counting all my blessings! Sayonara for now.

With HOPE and LOVE.

Just another Saturday in London town

On Saturday I'll be up in London again.

Bright lights, big city

It will be the first time for ages that I've been to a BTF London Group event.

Looking forward to seeing all who can make it. The group needs more help to keep running and when I heard that, I couldn't help but offer to do what I can to keep it going.

So it will be an early start and a Saturday away from my lovely husband and our beach life and a great chance to see some lovely thyroid friends I haven't seen for an age - and no doubt also to meet some new people.  Already, chatting to some group members and friends in advance of the meeting, I'm being reminded that it is so good to talk to other thyroid patients, to compare notes and just be there for each other.

Do come along if you would like to and can get there. All welcome.

This Saturday, 26th November. 10am - 1pm.

At Crown Court Church, Russell Street, Covent Garden, London WC2B 5EZ 

Click here for directions. 

This will be a support group meeting and a chance to discuss the future of the group.

If anyone else is interested in helping run this group please come along and join in the discussion.

As ever I feel it is vital that there should be a support group for thyroid patients in our capital city. People have travelled from all over to attend past meetings and for many members I know this group is a lifeline - because they have told us so. But it's a lot of work to make it happen and I for one am well past the point where I can take that on for no remuneration. My working capacity is reduced by my condition anyway and I have other voluntary commitments as well as paying clients that all require my attention and I have to be mindful of a sensible balance between paid and unpaid work. So we have to come up with a solution, ideally a way of working together as a Team, that will ensure the sustainability of these support meetings.

If you're coming I look forward to seeing you. If not - wish us luck please!  We need it.

*waving ever hopefully*

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."

The group goes on.... and why TSH is like the Richter Scale

Our meeting on 10th May went really well. When I get the time I will write up of some of the controversies discussed in Mr Lynne's talk and the Q&A session.  He talked for over an hour, was very open and shared a vast amount of information with us, we all learned a lot and it was a very enjoyable event.  He was a lovely man and brought along his equally lovely practice nurse, Patsy, we all really enjoyed meeting them both and are very grateful to them for giving up their Saturdays to support thyroid patients in London.

One of the biggest "wow" moments for me was learning that the TSH scale is logarithmic, like the richter scale, which would seem to explain why, for me, a seemingly tiny shift in TSH value = a massive difference in how I feel.

TSH log scale slide from Mr John Lynne's talk at the Royal Free, May 2014

I have now stood down as London Group Coordinator and would like to thank the remaining Team members who are commited to continuing.

What a relief that London will still have a support group for thyroid patients.

Upcoming events include a teddy bears picnic in Central London on the day of the London 10K run, on 13th July, which several group members, are running and the next Information Event is scheduled for 13th September.  Onwards!