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

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

One zillion questions related to nutritional science and thyroid function....

Good news, I’m happy to announce that we now have a wonderful programme confirmed for our November British Thyroid Foundation patient information event in London:

2^nd November 2013: Nutritional science and thyroid function - We will have two speakers from the Department of Nutritional Sciences, University of Surrey: 

• Dr Sarah Bath will give a talk on: Thyroid function, iodine and goitrogens
• Professor Margaret Rayman will give a talk on: Selenium and thyroid autoimmune disease.

Full details are on the BTF website.

I am very happy indeed to have managed to get these speakers. The topic is one that comes up time and again at our meetings – many thyroid patients, me included, are really crying out for reliable information on how nutritional factors might influence our wellbeing.

my supplement drawer, sigh

My own experience has been that making dietary changes has been exceptionally helpful in relieving symptoms which I had assumed were thyroid related. And I take various supplements, but I’m never entirely sure which, if any, are really helping me. I'm quite embarrassed about my monthly expenditure on supplements actually. But what's a girl to do??

While there are lots of opinions and many people who can talk from personal experience about what may have worked well for them, or for other people they may know, I never know who to believe or what it’s sensible to act on. Often, just a little bit of probing will uncover that nutritional advice being merrily doled out may not have a scientific basis. Mind you that doesn’t necessarily mean it definitely won’t work.  

My experience with going gluten free proves, to my mind, that just because science doesn’t understand everything, that doesn’t mean that trying something leftfield may not sometimes be effective. I’ve spoken to enough people who have had experiences of being very unwell who seem now to be radiantly healthy, and attribute their recoveries largely to dietary changes, to know that those people are doing something right!

Oh but the thyroid is a funny old thing and so interlinked with so many other things. I want hard facts. I want to hear from proven experts. I won’t just believe what I’m told just because someone else is sufficiently confident about their own opinion or personal experience that they will tell me it’s the truth for me too. I know that if I do the wrong thing it can have profound and sometimes very slow to materialise unfortunate outcomes. I have a zillion burning questions and I want a proper scientist to answer them. I know we won’t have time to cover everything that I and the rest of the London Group want to know. But I am looking forward to learning as much as I can from our two very eminent and generous speakers, who are kindly giving up their Saturdays to come and talk to us about what they know.

Here are some of the questions I'm hoping we may get answers to:

•  Do we need to be careful not to eat too many goitregens? Are some worse than others?
•  I became more hypothyroid after I replaced dairy with soya for a period of months, might that have been a factor?
• Although I tested negative for celiac (while eating gluten) I feel much better since mainly cutting gluten and other fast burning carbs from my diet –  can you explain why that might be?
• I take 200 iu selenium every day, is that a good idea? what is a sensible dose and should my levels be monitored?
• Many individuals with borderline thyroid blood results, who are not prescribed thyroxine, consider taking iodine but we are told this could make them unwell, what advice would you give?
• I seem very sensitive to sugar but I’m not diabetic, is there an autoimmune connection?
• What moves are there to integrate nutritional science into the NHS  treatment of hard to treat thyroid patients?
• How big an issue might food intolerances be in relation to autoimmune conditions in general?
• How can we as patients help ourselves?

What questions would you add to the list?  We’ve got plenty of time before the meeting. This is a good opportunity to build a comprehensive list of what we’re all longing to know..... The likelihood is we will have at least one follow up talk nutrition after this initial one as it's such a big topic, although I've no idea who will be the best person to get, it's taken over a year to find Professor Rayman and Dr Bath. But by hook or by crook we will learn as much as we can, so that we can help ourselves to feel as well as possible!

Please post your thoughts below.

I'm also fascinated to hear from you if you have had an interesting (good or bad) nutrition related experience...

With love and light.