Thyroid talks

I've spent the last few days looking for a speaker for our next British Thyroid Foundation information event in London (3rd March). Last year we asked attendees what topics they would like us to cover in the future.

Here are the results of our poll:

What topics would you like to see covered in future events?

How get the most out of your doctor when you have a thyroid disorder – including power questions you can use, 19 votes

Nutrition and thyroid disorders – listening to and knowing your body, 16 votes

Mental health and thyroid disorders, 13 votes

Thyroid disease and bones (confirmed topic for 15th October event), 9 votes

Patients sharing their stories, 6 votes

Thyroid facts and fables, 6 votes

NDT (natural dessicated thyroid) research, facts, fiction, why do the USA use it and not us?, 5 votes

Thyroid disease and pregnancy, 3 votes

Thyroid Surgery, 3 votes

Thyroid Cancer, 2 votes

Radiology, imaging and the thyroid – radiology and imaging innovations are at the cutting edge of medical research, 1 vote

So, in response to this poll, we were looking for a speaker to cover the most voted for subject: how to get the most out of your doctor.

We also wanted to get someone to talk about cognitive behavioural therapies and techniques  (CBT) that thyroid patients can use to help us manage our conditions. We felt the two topics could potentially sit well together.

Suprisingly, while there are specialists who use CBT to support patients with chronic illnesses there doesn't seem to be anyone who is a thyroid specialist doing work in this area or focusing on thyroid and mental health issues. Not that I've been able to find so far anyway.

I speak to quite a lot of thyroid patients these days and so many of us share the experience of struggling with our memory, sometimes our emotions and often our ability to think clearly. A lot of people are very concerned about these symptoms and often they don't know that they are not alone in experiencing them. Just knowing that other people have similar experiences is in itself enormously reassuring for many people.

I've heard an endocrinologist say that he and his colleagues see thyroid patients as a "difficult bunch" because they can be over emotional and snappy in consutations.

Frankly I'm surprised that there isn't more medial support for this aspect of the illness. 

I left my last job because my brain just wasn't working the way I needed any more, to be able to continue to function in a demanding work environment. More than twenty years of building a career that was important to me has kind of gone down the drain. I'm lucky, my adorable husband is able to support me and I've regained sufficient mental capacity to be able to now do some  interesting paid work again on a freelance basis. I don't have children so when I'm tired or feeling foggy I can just rest.

I'm incredibly lucky. But there are people out there who are not so lucky, who are seriously impoverished and in many cases desperately unhappy as a result of not being able to work because they can't think straight and / or don't have the required stamina.

Personally, as well as being in good circumstances (which I'd just like to point out I have created for myself I wasn't born with any silver spoon in my mouth, far from it), I've found that I have been able to help myself a lot by practising cognitive behavioural techniques. Being aware of how my mind works and the impact of what I'm thinking and doing on my wellbeing, thinking and acting mindfully. Eating well, exercising, getting fresh air, not dwelling on anything that upsets me too much (because I've learned how exhausting that is!).

Like anyone else with a health condition I'm highly sensitised to the suggestion that my symptoms, particularly fatigue, could be caused by my mind. It's an outrageous and offensive suggestion and doctors need to learn to be super careful about how they broach the subject of the mind body connection. However I recognise that I am both a mind and a body and I've seen powerful demonstrations of how the two elements are bound together and can have extraordinary impacts on each other. I like the idea that I can help myself in some ways and I understand that my body is a complicated entity with potentially more than one cause and more than one possible solution when problems arise. So I'm open to this stuff.

Lots of people aren't though. Mental health issues and labels are scary. People are afraid of talking, doubt that it can help them, see it as a diversionary tactic by the  medical profession. Understandably in many cases, following years of misdiagnosis and mistreatment, some thyroid patients are highly suspicious of the medical establishment. This is so wrong!

We need doctors to be able to help us.  We need acknowledgement that our illness can affect our mental capacity and we need advice on how to handle this and what we can expect with optimal treatment. And we deserve the best possible treatment to return us to the best possible state of health so we can be contributing members of society and not have to live our lives on the sidelines.

We don't want much!

It seems that research and specialist treatment in this area is very limited.

I'd love to hear from doctors who treat patients with thyroid disease. Do you find thyroid patients difficult sometimes? Do you consider that their illness could be making it difficult for them to communicate effectively with you? What do you think patients could be doing to help themselves get more out of their consultations with you and your colleagues. What are the best questions you've ever been asked by a patient and why was it so effective? What do you think is the best way to address the mental health and cognitive function aspects of thyroid disease, or is it something you basically ignore and don't see as relevant?

And I'd love to hear from patients, what do you think of this topic and what else would you be interested in learning more about, in relation to your thyroid disorder? If you're in London you can come to our information events and help shape the programme by saying what interests you, shall I set up a poll?

Thanks for reading, I'll let you know next time who I've booked as a speaker for Marchy. As long as we have breath we have hope.

:)

Get up, get down, keep moving...

For the last few weeks I’ve been spending my Wednesday afternoons with a group of other women with chronic illnesses.  Lucky old me eh? My life is just like one big disco party...

(photo of disco ball c/o my Auntie Margaret's sheltered housing common room,

 music from the depths of my disco memory, click to play.)

I signed up to do an Expert Patient Programme course because it promised to help me learn how to manage my chronic health condition and get the most out of the medical profession.

On the whole I have to say it has been quite useful though not entirely what I expected.

The course leaders are volunteers who also have long term health problems. They are lovely ladies and extremely well prepared for every session with flipcharts and notes so they know exactly what they’re doing and it’s all very clear for everyone.

EPP trains them and in fact during our course they were assessed and have become accredited, which means that the next course they deliver they will get paid which I think is pretty good.  I’m all for patient power and turning your experience of illness into an earning opportunity seems like a positive step. It also removes that sometimes uncomfortable professional:patient relationship that us sick people can have sometimes with our doctors.

At the end of the day, we’re all people, while I recognise that experts will (hopefully!!) have more knowledge than me about my illness and I need their help, there’s also a lot of value in getting advice and support from other people who have gone through similar stuff to me and are not going to see me as somehow less than them.

(Anyone else ever felt that their doctors don’t always seem to take them entirely seriously? I find that so tedious and BAD for my self esteem!)

Great value too for the NHS – mobilising patients to help each other has got to be a sensible long term strategy for sustainable health service – no??? Come on!! On that note I’d just like to share this excellent Ted Talks video from Dave deBronkart also known as @epatientdave.

So what have I learned so far? Different things to what I expected.

We did some stuff on communications skills and I’m super keen on this stuff because communication is one of my passions and I’ve studied it as well as being employed as a professional communicator for most of my adult life. But surprise, surprise, there wasn’t anything new there for me, basic stuff I know already and I felt that it was skipped over too quickly so that if people didn’t know it already (and not everyone would) they wouldn’t necessarily “get it” in the short session we did. Still there’s more of that to come, I may yet have a communications eureka moment!  I have to try not to be so judgemental and the content we did cover was good stuff, just not new for me.

Then we have done quite a lot on exercise and I didn’t think I was going to learn anything new there. Exercise is exercise, right, we all know it’s good for us and we should do it. When we’re ill of course it’s difficult, sometimes impossible. I learned at the Fatigue Clinic that while I’m not well enough to go running or to a yoga class for an hour, I can do 5 mins of exercise every couple of days and over time will be able to build up to doing a few more minutes, then more and more till I find I am as well as I ever was....

While I can only hope that the end bit of that will turn out as promised! And if it happens I have to expect it will take a long time, I have been doing little 5 min runs and finding that I enjoy them and feel better for them – yay me!  That was one of the useful things I took away from my sessions there (more on the Fatigue Clinic another time)

In the EPP group there are people who are not fit enough to do the little runs I am managing – but they are setting different goals, like walking up a flight of stairs a couple of times a day, or doing a few gentle upper body exercises in a chair. So I have been reminded again how lucky I am not to be much more ill than I am. And I am inspired by these women’s determination and commitment to take on their situations and take the daily steps towards being as mobile and as well as they can.

The group dynamic has encouraged me to set specific exercise goals and to achieve them. We also  had a great group discussion about why exercise is so important. It affects our bone density, our blood pressure, our muscle tone, our levels of pain, our heart health, our state of mind, our stamina and breathing, so many things beyond just the wanting to be trim and strong that I was focussed on. I really “got” how important exercise is, more than I had previously fully appreciated. So that’s been quite surprising and an unexpected lesson!

I’d love to hear from anyone else who’s done an EPP course, or anything like it, or anyone who’s read the great course book which is available on Amazon for not very much money and I’m super impressed with.

What do you think of the idea of patients helping themselves and the weird power dynamic that I feel exists between people who happen to be patients and people who have chosen to be doctors? Do you agree with Dave's video?

How do you get on with exercise? Or communicating with your doctors for that matter?

I will blog more about this course another time. Thanks so much for reading, it means the world. Comments as ever are very warmly welcomed.

Hope