The long awaited Nutritional Science event - press release

MEDIA RELEASE Weds 23 October 2013 for immediate release

Nutritional Science and Thyroid Function event for thyroid patients at the Royal Free Hospital, London, Saturday 2nd November

London thyroid patients to learn about nutritional science and thyroid function 

dried apricots and sunflower seeds - a healthy snack?

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, 2nd November 2013.

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, where treatment is not straightforward, can have a devastating impact on people’s lives.

Leading Nutritional Scientists, Professor Margaret Rayman, and Dr Sarah Bath, from the University of Surrey MSc in Nutritional Science will be giving talks on nutritional science and thyroid function. This is expected to be a very popular subject with so many patients with chronic health conditions, as well as the public in general nowadays, extremely interested in knowing how nutrition might help them achieve better heath – yet often bewildered by the conflicting and confusing advice given from different sources.

Professor Rayman and Dr Bath are at the leading edge of nutritional science in this country and will be talking about the latest research findings as they relate to some specific nutrients and how they can affect thyroid function.

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

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, 2nd November, from 10am to 1pm, in the Sir William Wells Atrium, Royal Free Hospital, Hampstead.

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

For more information or to book a place, go to: http://btflondongroup.eventbrite.co.uk

Notes for editors

Professor Margaret Rayman has a doctorate in Inorganic Biochemistry from Somerville College, Oxford and has held post-doctoral fellowships at the Institute of Cancer Research and Imperial College. She is now Professor of Nutritional Medicine at the University of Surrey where she directs the highly respected MSc Programme in Nutritional Medicine. For the last nine years her work has focused on the important of trace elements to health, her research includes investigating the relationship between selenium, iodine and thyroid function and she has published widely, including in The Lancet. She is a registered public health nutritionist, an active member of the Nutrition Society and has been a Member of Council of the Nutrition Society since 2007.

Dr Sarah Bath is a post doctoral research fellow at the University of Surrey, Nutritional Medicine Programme. Amongst other affiliations she is a registered dietician with the Health and Care Professions Council and a full member of the Nutrition Society.

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

Thyroid Disease has been in the national press recently, see Ian Probert’s story in the Guardian (it was also featured in the Daily Mail):

http://www.theguardian.com/lifeandstyle/2013/sep/08/underactive-thyroid-was-slowly-killing-me

The BTF London group was launched in 2011 and meets around five times a year.

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 pu

Book your place: http://btflondongroup.eventbrite.co.uk

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

A few days later... decision made

A few days on from my last post, the dust (in my mind) has settled and I have reached a decision.

I'm changing doctors.

I've taken extensive advice from various local sources and I've chosen a practice with an excellent reputation which I hope will be better than the one I'm leaving. I've filled out all my forms and I dropped them off at my new surgery today. They've said they'll take me. Actually it was easy.

it's a new dawn.....

Why did I put up with all the problems with my old doctor? Why did I spend all that time writing letters back and forth trying to sort things out? Why on earth did I not do this months ago, or even last year? Heaven knows I've thought about it enough.

To be clear, my doctors's treatment of my hypothyroidism has been by the book and perfectly acceptable.  I don't have any complaints regarding her level of knowledge or competency. She also promptly referred me to an endocrinologist when asked, as she ought to have done according to the treatment guidelines from the British Thyroid Association for hypothyroidism.  So that's all fine.

My issue with her has been that I've often found her difficult to talk to (she interrupts, pulls faces and gets agitated) and also that she bizarrely sent me for an HIV Test when I didn't need one and she didn't bother to tell me she was doing it, which upset me. The whole HIV Test thing has brought things to a head. This is what I've been holding back sharing.

A June 2013 hospital blood test  showed that I had become anemic (due to my heavy periods) and it also showed a low white blood cell count. Due to a mix up with communications at my GPs surgery, my GP got the impression I was very worried about this white blood cell result.  In fact I wasn't at all - because no-one had indicated to me that there was any need to be worried, so why would I be?  But I called the surgery several times because I was expecting some advice, or an iron prescription, regarding the anemia, our messages to each other got lost in translation as the surgery message handling system is not very robust, so she decided I was worried. 

She therefore decided it was appropriate to send me for an HIV test - but she didn't tell me. I wouldn't even have known I was having the test if I hadn't asked the nurse what tests she was doing when she was about to draw my blood.  When she answered my question "full blood count [fine] and HIV Combo" [whaaaat? not fine!!!], I nearly fell off my chair. I had never considered HIV infection could be a possibility  it seemed that my doctor did think it could be, this was a total bombshell. Subsequent discussions revealed the test was not in any way appropriate or needed and I declined to have it.  There's nothing in my symptoms or lifestyle to indicate HIV could be an issue.  When I spoke to the doctor she said that the white blood cell count will probably right itself but that if it didn't it could be worth doing an HIV test as "that is the only viral cause of an ongoing low white blood cell count" (which indicates to me there may be other non viral causes but we didn't talk about this in more detail, who knows!) Funnily enough follow up tests of the white blood cells have been fine. She was just so bloody insensitive about the whole thing. Like I wouldn't want to have something like that explained to  me before just being given a test like that. 

I asked the Terence Higgins Trust if they thought it was reasonable for me to be referred for an HIV Test with no prior discussion. they said it was not reasonable, in fact my doctor, in their opinion,  had acted in a way which was unethical, insensitive and cavalier. I spoke to someone at NHS England for further advice, they said they agreed with THT.   Both organisations commented that it sounded like a waste of NHS resources as well, to run such an uncalled for test. 

So I complained. About the test, the communications mix ups and about the fact that she is often very difficult to talk to, making consultations more stressful than they ought to be. I'm glad I raised the issues. However it was stressful to do and I have not got the outcome I wanted - an improved relationship with her and an apology for the HIV test referral. 

I have at least achieved clarity,  I know now that I want another doctor. I tried everything to resolve things  and it became clear that my doctor is not going to change her behaviour or her attitude and that the way she behaves and her attitude are not what I want. 

I'm fairly appalled by how convoluted the NHS complaints procedure appears to be.  

First of all when I spoke to my doctor about my concerns she got in a total flap and insisted I put them in writing. When I did so I was promptly told the relationship had broken down (which I ddn't agree with) and told that the only way to have a discussion about it was through a formal mediation process which I reluctantly agreed to as I wanted to have the conversation. It then took ten weeks for that mediation meeting to happen and when it did happen it was just really stressful. The local complaints manager at NHS England basically told me that because my complaint had progressed to mediation with the surgery the only way to escalate it was to go all the way to the Parliamentary and Health Service Ombudsman. The mediation man told me that would likely be a tortuous experience which is unlikely to yield anything very useful and that I might want to put my own wellbeing first rather than going down that route. Indeed I do. I've been exhausted since the mediation meeting. It was stressful. Stress is not good for me. In the scheme of things this is a small matter and not something I want to waste a lot of energy pursuing. Frankly I just want my complaint noted and to move on.  But there's no point it only being noted at my GPs surgery because they've made it clear they just don't agree with me. Who is my GP accountable to?

Since the big restructure of the NHS earlier this year it's hard to work that out. PCTs don't exist anymore. PALs (Patient Advice and Liaison) Teams don't exist anymore. the Clinical Commissioning Groups who I thought were running the whole thing now are not involved in primary care, which instead comes under NHS England (a separate organisation). But... after  many enquiries, It turns out that there is a team of people within the Medical Directorate of each region at NHS England who are responsible for GP performance management. And I have now got the details to write to them. In fact I have the name and address of the Medical Director himself. It seems that, under this convoluted new structure, this team never get to see a lot of information relating to patient complaints but I'm told they'll be interested to see this and it might get as far as being included in my GPs next performance appraisal.  That's all I want. Someone who has some authority over her, telling her what I'm telling her, so that she has to take it seriously.  When the NICE Guidelines say that a patient has a right to give informed consent or decline an HIV test, that means you can't just organise that test and say nothing to them about it. 

I've also discovered that there is a facility on NHS Choices website where patients can post and read reviews of GP surgeries. Check it out (click the link above), if your doctor is good why not leave them a nice review, you never know when someone else might be seeking some reassurance about a surgery before registering with them. You could help. Likewise, it's worth sharing negative experiences to help people make their minds up about whether or not to give a particular surgery a go.  I've just posted a review on there about the doctor I'm leaving. It's interesting to read both reviews from patients and responses from practice managers. I think if I'd seen this before I registered with that doctor I would have gone elsewhere.  So hurrah for increased transparency.

I've also done a write up of the issues I've had for Patient Opinion.  This website aims to share feedback with the people responsible in the relevant bits of the NHS. 

I realise I'm in danger of looking a little bit obsessed and like I have too much time on my hands.  Ah well. I do probably have too much time on my hands at the moment and good patient care is something I am very passionate about. Having reached what has been a massive decision to move doctors I am determined that by hook or by crook my feedback will be heard and I hope that it can do some good. Perhaps at some stage my doctor will actually reflect on her behaviour and consider how she could do things differently. At the very least perhaps someone else will avoid going through what I went through because they will read my story and avoid that surgery.. 

According to the GMC guidance on good medical practice doctors must be polite and considerate and treat patients with dignity, allowing them to be partners in their care, they must listen to patients and take account of their views, they must be considerate sensitive and responsive. As I don't accept that referring me for this test without so much as a by your leave - and telling me that the relationship has broken down as soon as I protest -  is in line with these requirements, I'm just really cross. 

So that's that. The new surgery seem great. Let's see how I get on. It's so important to have a good relationship with a doctor when dealing with chronic health issues. Wish me luck. 

"Thursday, Thursday, Thursday...."

I had a meeting with my GP this morning, also the practice manager and a professional mediator. I found it quite harrowing but I'm hoping good things will come of it. Get me, ever the optimist....

I'm not dead yet!*

The background is that we had a mix up a couple of months back, I won't bore you with the details now, I may follow up with them in a later post. As well as the mix up I was getting fed up that I often find it really difficult to talk to my GP. She often interrupts me and doesn't let me finish what I'm saying and she often appears impatient. It's frustrating.

As a patient with a chronic health condition I need to be able to talk to my doctor. I need to feel she is listening and I need to have confidence I am receiving a good standard of care. When I don't feel listened to I become concerned that any treatment recommendations being made may be ill considered and that important factors may be being overlooked. I am mindful that as an autoimmune hypothyroid patient I will typically have multiple symptoms which may be linked to my thyroxine dose, or something else needing to be addressed - and I am liable to pick up other conditions too. Symptoms can be caused by the thyroid condition and also by other things which may be wrong.

I am fiercely determined to be as well as I can be and to advocate for myself to receive the best possible healthcare. I also feel passionately that many other patients with chronic health conditions also deserve the best of care and may not be in a position to advocate for themselves as strongly as I, with my years of experience as a professional communicator, can. So I am committed to holding medical professionals to account to provide a good standard of care for everyone.  Oh and of course, when I am not as well as I am now, my own communication abilities are debilitated and I simply can't be doing with every conversation I have with my doctor being a struggle.

Today's meeting came about following a series of letters exchanged between myself and the practice. Each letter I sent was hard work for me to write and was only done because I felt I had no option. I had kind of reached the end of  my tether with them. To their credit the practice have been totally on the ball and responsive with each communication. I have faith in their good intentions. I recognise they work with systemic difficulties which are not their fault.  I have faith that my doctor is a good, knowledgeable and committed doctor. But she unfortunately is working under extreme pressure so is constantly having to prioritise and work as swiftly as she can and that means the service she can provide may always be somewhat compromised.  In addition, I think that after today the penny has dropped for me that her sometimes unfortunate communication style is nothing to do with me but comes of being someone who is intellectually super bright but doesn't have strong interpersonal skills.  I had been worried that her behaviour towards me meant she thought I was a waste of space. I'm reassured after today that I don't think that's the case.

While I would love to have a doctor who is warm and empathetic I feel it is more important that I have one who is efficient and on the ball. Ideally I would naturally like to have both but at the moment, with the NHS in the mess it's in, I fear that might not be possible. I just don't know. Are my expectations too low? Certainly changing doctors, while an option, is no guarantee that I will end up with anything better than I've got now. *sad face*. Actually I'm being unfair, she is genuinely empathetic, she just isn't always great at expressing that empathy.

We had a big chat. I reached the conclusion that she will probably always be quite hard work but that she knows her stuff, medically and that she does have my best interests at heart.  We agreed to work at the relationship and hopefully over time it will improve. As this is what both sides want I am hopeful we can make it work.

The mediator and practice manager were both helpful and also seemed committed to achieving the best possible outcome.  I made it clear I will change doctors if I decide I need to and she said she hoped I wouldn't, as she'd see it as a professional failure and she cares about providing a good standard of care.

The whole thing was bloody hard work. A bit like life I hear you cry! Well yes, maybe. Maybe that's just how things are. It could certainly have been worse.

The "Thursday Thursday Thursday...." thing is the sticking point. I said - "I need to know you hear what I'm saying, it doesn't work for me when you interrupt me", she said "I need to filter all the different things that patients say to me, identify what's important and respond to that, if you were to sit in front of me and just say Thursday, Thursday, Thursday I wouldn't respond to that because I would know that it wasn't important". Hmmm, if I'm saying something important and she's hearing it as "Thursday, Thursday Thursday", that's no good is it? That's no good at all. And I don't go to the surgery to say things that don't matter, my time is worth more than that.

Do I trust her judgement on what is "Thursday" and what is important? That, for me, is perhaps the crux of the matter. I recognise that she knows a lot more than me about mecicine and she acknowledged that I will know more about my condition than anyone else.  She said that she values my input in decision making, which is a good thing. Hmmm. The theory is that after clearing the air today we have built some mutual understanding and she will listen to me more in future, mind you she didn't actually say she would. The "Thursday" comment was possibly quite telling.

After the meeting I felt quite frazzled. My lovely husband gave me a big hug and a bar of chocolate and my Twitter friends rallied round, one tweeted me a beautiful oil  painting of a tranquil sea he'd just finished, another took me out for coffee and a flapjack - and brought me home made honey and freshly laid eggs too! People are amazing. I feel supported. I'm grateful for that.

I have some more thinking to do and will post again about next steps, when I've had more chance to reflect on what they're going to be....

How about you, ever complained? Ever switched doctor? Ever wanted to? Ever used the NHS Mediation Service, or posted your experience on Patient Opinion, or pursued any other avenues to make things better between you and your doc? I'd love to know. You can comment below if you'd like to, I'd love it if you did.


*My friend from twitter who kindly took me out for coffee today suggested we meet by the Halloween display in The Range, Westwood Cross, there's actually quite a nice coffee bar there and she had some business to attend to nearby. I thought the gruesome display was hilarious - and kind of apt for today's post - at least I'm not dead yet and I've got lovely friends and I can still have a laugh! 

RIP blue man

I just saw this terribly sad story and was reminded of an alternative doc I saw in the nineties who wanted me to take colloidal silver. I'm so glad I didn't.

Click here for Daily Mail article  and the full story.

So sorry for this poor blue man who is now dead.

Paul Karason, RIP.

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 Managing Symptoms, May 2013

An earlier post introduced the Patients Voices meeting we held in London on 11th May 2013. This post shares the notes from the breakout discussion group which looked at managing symptoms. 

With many thanks to Group member, Hannah Elbourne, who has kindly typed these up and who also kindly took several lovely photos of this event.

NB: These notes must not be interpreted as medical advice, they are simply things that individuals have tried and found helpful to them if you are experiencing any symptoms which cause you concern - speak to your doctor. 

BTF London volunteer, Theresa, with the Expert Patient Programme course book:
 Self  Management of Long Term Health Conditions

Managing Symptoms, Discussion Group Notes:

Everyone in the group explained a bit about who they are and why they have chosen this particular group to participate in. We went on to talk in general about coping with having a chronic illness as well as discussing our perspectives and questions we had on how to spot and manage the emotional, mental, and physical symptoms related to thyroid disease.

Everyone in the group was hypo rather than hyper, so this is what we focused on, although it was acknowledged that hyper and hypo symptoms can be quite similar and difficult to detangle - and also that symptoms can vary from person to person and may not always be down to our thyroid condition as we may also have other things wrong with us. 

There were some approaches that came up which people felt help them in general, and also techniques for coping with specific symptoms.

  

Common symptoms and things people in the group said help them:

Muscle pain/ swelling: especially lack of upper limb strength makes it difficult even doing simple exercises that use arms or puts pressure on shoulders:

•         Magnesium spray on the muscles
•         Not eating salty foods
•         Seeing an osteopath
•         Massage therapy (human contact) – one person goes for a massage and talks through it so it’s like a two in one therapy session!

 Difficulty sleeping/ insomnia: really need sleep to be able to function (more than before having thyroid issues) but find it much harder to get off to sleep, plus wake up a lot more during the night:

•         Don’t exercise too late as the body should be winding down, not up
•         Switch off computer/ electronics
•         Don’t eat too late
•         Try to be in bed early and at the same time each evening

 Immune system issues: we all seem to catch more colds and viruses and they seem worse and take a long time to recover from making life difficult:

•         Olive leaf tea
•         Echinacea drops
•         Vitamin C as it helps to strengthen the immune system
•         We discussed supplementing separately instead of all in one multivitamins and researching to find the right products
•         Flu jab – this helps one participant but made another feel very unwell
•         Avoid people with colds like the plague!

 Body temperature: not being able to regulate our temperature, either too cold or hot, and not being able to cope with being in the sun:

•         Exercise helps to regulate temps
•         Wearing layers

 Hair thinning/ falling out: this can be very upsetting for people:

•         Coconut oil to help dryness
•         Trichologist, but expensive
•         Not to get upset about changes in appearance, there is more to you

 Fatigue: both physical and mental fatigue can make us feel isolated, disconnected and depressed and stops people from being able to live their lives:

•         Learning to say no and not take too much on is difficult but important
•         75% rule – trying not to use all your energy each day, even on good days when you might want to do lots – factor in rest each day
•         Being gentle on yourself and not beating yourself up when you can’t do so much
•         Coming to terms with the changes and understanding your new boundaries

 Anxiety: as with fatigue this can make us feel isolated and inhibit our lives and affect our self-esteem.

•         Deep breathing and yoga breathing techniques
•         Gentle yoga practice and other gentle exercise such as Thai Chi and walking  
•         Meditation
•         Being around nice, genuine, caring people helps!

 The above coping techniques for fatigue and anxiety crossed over a lot and came up a lot with helping to manage thyroid symptoms and a chronic illness in general.

Nutrition is also big factor in taking control and managing ourselves but although there are some general points that seem to work for a lot of people, such as going gluten free sometimes helping with brain fog and fatigue, or vitamin D and Iron levels needing to be optimal for thyroid to function well, it is all very confusing. We touched on this briefly but there is a lot of conflicting information especially as what works for a person with underactive thyroid doesn’t necessarily work for someone with an overactive thyroid, or autoimmune thyroid, or for people who do not have a thyroid! [note from Lorraine - we are continuing to seek more information on this subject for group members and will have speakers from the University of Surrey Msc in Nutritional Medicine giving talks in November 2013]

We have all had to make life changes and have to keep adjusting. The changes in ourselves, our personalities and our constantly changing boundaries are a struggle to understand and to cope with, not only for ourselves but also for the people around us.

Support from others is a very important factor for our wellbeing but it is very difficult for others to understand how debilitating this illness can be because:

•         Symptoms can be so variable
•         It is seen as an easily treated illness
•         So many symptoms are similar to what people think they can relate to when they are actually very different i.e. thyroid fatigue is very different from just being tired, or brain fog is not the same as having a lack of focus.

It would be useful to build a template for how to explain our symptoms and the things we go through that others don’t see (‘walk in our shoes’)

We also talked about how it can be difficult to spot thyroid symptoms as they can be similar/ confused with many other things, for example problems such as fatigue, depression, and anxiety may or may not necessarily be because of the thyroid and could be an indicator for something else. So being around other people with a similar illness can really help with recognition and understanding of what is happening to us, and although each person is different there is still a lot of common ground.

I’d like to add and I think others agree that the events at the Royal Free are very emotional (in a good way!) and informative, it makes such a huge difference to be around fellow thyroid patients as it can be such an isolating illness and being able to chat with people in a supportive environment is a great relief and really helps me to feel less disconnected from people in general. Thank you!

Other things that were mentioned in breakout group:

• Heart palpitations – we did talk about this with anxiety but I think although they can be connected, palpitations are also a separate issue on their own.
• Not a cure but how to cope for now
• Variability of symptoms limits you
• Alcohol seems to disagree with us
• Blood tests don’t necessarily show how you feel

 Other things that were mentioned, but maybe in wider group

• Time of day for taking thyroid medication vis-à-vis other pills 
• Reducing carbs, esp sugar
• Keep book of successes
• Not the same person as pre-illness