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.

Health Activist Soapbox

Today I can hardly clamber on my soapbox. My bones are weary. I had a dream last night about being so tired I was dragging myself around and when I woke up I was indeed exhausted. I've been tired all day.  Wondering if it was something I ate yesterday. It seems I have some food intolerances, not yet fully understood, I've cut some stuff out of my diet and overall I feel much better, but I still have the odd day like this and my skin is a bit crap too and that makes me think it could be a food thing.

eggy breakfast with celery and peanut butter, #healthyyum

But I'm not writing about food. I'm writing about health activism. Where was I? Oh yes, I keep forgetting. Then I remember. And I carry on.  So I'm tired, forgetful and a bit spotty today, but I'm on a mission. I have a soapbox. Here I am, I'm on it. Are you listening?

Through becoming unwell and being one of life's natural campaigners I have become a health activist. What does that mean, what do I do apart from write this blog?

Mainly I set up and run meetings in London for thyroid patients.

When I got ill I wished there was a meeting I could go to, to get good quality information and support. There wasn't.

I spent quite a bit of time in the early days on an online support group but I kind of grew out of that. There was a lot of misinformation and bad feeling being bandied about, alongside some lovely warm support.  There were some great people there, some I'm still in touch with, but ultimately it wasn't enough and it wasn't quite right.

As soon as I was well enough I started putting wheels in motion to set up a group that would provide what I was looking for. I chose to work with the British Thyroid Foundation as they seemed to be the most credible thyroid patient charity in the UK. It's been brilliant. Along the way I've been supported by a fantastic team of fellow volunteers and we've done several events which have all been mostly extremely well received. We try and make each event better than the last and do our best to learn from all the feedback we've gotten so far.

I also provide telephone support for other thyroid patients. People call me and I talk to them and I find I have a lot of information I can pass on, stuff that their doctors seem not to have the time to tell them, or may not even know themselves sometimes. I share my experiences and it seems that the people who call really appreciate being able to speak to someone who can understand where they're coming from and I can sometimes shed some light on their situations by talking about how it was for me. I obviously don't give medical advice, I'm not a doctor and often people who call me might have all kinds of health stuff going on that's way beyond my limited knowledge. But it seems that making myself available in this way is helpful.

I try to raise awareness of thyroid disease, I talk to journalists, etc, regularly. I tweet my little socks off having been introduced to twitter by social media queen and dear friend @claireboyles.

(Warning if you're not on twitter yet, it is addictive, but it's also a great way to connect with like minded people so why not just go for it!)

I get involved in a bit of fundraising, not too much, I have to manage my energy levels, there's only so much I can do. I figure I'm giving a lot in terms of time, so fundraising feels like less of a personal priority.

I'm also always trying to gen up: on the illness, on related conditions, on our ever changing National Health Service and treatment guidelines. It is my aim to influence UK health policy and health professionals around how thyroid patients are treated. At the moment I just do that in a small way, via networking with doctors and policy makers via our events and other conferences I get to go to, as well as online platforms etc. In time I hope I can become more effective at this. I'll find a way. I'll make a plan. I'm getting there.

The only issue with all of this is that I'm knackered and I can't always keep on top of it all quite to the extent that I would like. (Maybe I need to eat more, or fewer, eggs!) Also that I have to balance doing what I do around thyroid stuff with earning a living.  It's a shame there isn't an organisation that would employ health activists to do what we do (part time, flexi hours, with excellent rates of pay to reflect our skills and experience, of course).

So I'm not doing a lot of ranting from my soapbox today, just not got the strength to be particularly rousing or oratorial. But hopefully I've given you a bit of a window into my world and what being a health activist means to me.

Any hints and tips from others doing similar stuff would be very gratefully received.

Meantime I'd just like to share a link to another #nhbpm post I read today - a fairy story about online support communities, everyone should read this before they get sick and go online! "Joy's story"  from Chris Dean - I loved this. Am discovering so many amazing health bloggers this month.

November is Health Blog Post Month, this is my 5th #nhbpm post - find out more on the Facebook site for the campaign

with love and light

Hope (Lorraine)