Thursday, 19 January 2012

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.



  1. Hi,I've been diagnosed for just over 10years. I used to think I was moody and hormonal and have only in the last year realised how much of an impact my thyroid levels have on my behaviour/temper. I love my job and I think the challenge helps keep me going. I do get frustrated though that work colleagues refuse to under stand the condition. I've even had to make sure I've registered as disabled with my employer so no idiots can treat me unfairly. My go is really good but I think it's because he is person centred and listens to me about how I feel and how I want to be feeling. I did suffer nearly 6 months on to low a dose of thyroxine which really did,I feel, wreck my chance of decent living.

    1. Hi, thanks for sharing, it's scary isn't it, how much of an effect thyroid hormones can have and how next to impossible it can be for others to understand. I'm so pleased you have a good GP and job you enjoy, it makes a world of difference being listened to and taken seriously doesn't it.

  2. Hi there
    I recognise a lot of your symptoms and experiences too. I was diagnosed with an overactive thyroid 5 years ago, was given RAI almost immediately as I had a bad reaction to the antithyroid drugs.This made me very underactive. I was off work for 9 months and really struggled with the NHS. Now I have found an excellent GP in my practice and my thyroxine dose is beginning to stabilise.But all the while I feel that I've been re-inventing the wheel and can't understand why the illness isn't treated holistically as all the body functions and the mind are affected by the thyroid hormones. I think it would be great to learn more about the doctor -patient relationship and more about CBT which has been useful to me

    1. Hi, thanks for posting, so sorry you have had such a difficult time and it's taken so long to get you even close to having your dose stabilised,.I totally agree a holistic approach would be so much useful for us patients. Good news is we have two fantastic speakers confirmed for our London event on 3rd March, one will be talking about future approaches to thyroid treatment and the other will be talking about howe we can get the most out of our health care professionals. should be good. are you in London? Feel free to come along and/or check out the Expert Patient Programme which is really useful.

  3. It seems that the only success measure in terms of treatment effectiveness is the T3, T4 etc. levels obtained from your latest blood test. I had to really push back with the Endo clinic to get my thyroxine dose in order and working for me because my bloods said that I was "well within normal range". Truth is, who knows what the normal range is for any of us when we hadn't previously measured it? It's tough if you need 110mcg of levothyroxine since the drug companies only make it in 25mcg denominations. I have to say I was put in the hands of the Hospital clinic rather than my GP - I don't think my GP had sufficient knowledge to confidently advise.

    1. hi!

      thanks so much for sharing!!

      it seems that different doctors will often take a slightly different tack. I've been lucky, in one respect, in that all the doctors I've seen have been totally relaxed about adjusting my doses while I've been within the normal range. I know some people encounter docs who are much more rigid and I'm just apalled by some of the sad stories I hear. It's bizarre and outrageous frankly that some people get such a raw deal. I've been less lucky that none of the changes have yet returned me to full health but, a little bit at a time, with a few setbacks along the way, I do seem to be getting slowly better. At the moment I am cutting pills in half and varying my dose on alternate days to try and get it right (all on my doctor's instructions) so I really agree it seems strange they don't make a better range of denominations of thyroxine, it would make life a lot easier.

  4. Quick update to the above post, I managed to confirm two wonderful speakers for the event on 3rd March 2012. The full programme is now on the BTF website, hurrah! Let me know if you want to come along.


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    1. Hi Simone, thanks for stopping by and for the support.

      I love your blog, the way you write and the recipes, though I don't agree that we shouldn't take medicine, when we have an underactive thyroid, we need our medicine to stay alive!

      But having gone gluten free and low carb myself recently I now recognise what a big difference it is making to how I feel. I wish I'd realised this sooner.

      Looking forward to making some of your recipes. they all look yum. :) You might like to check out the #healthyyum hashtag and facebook group started by @claireboyles as another way of spreading the word.

      *waving and smiling*