This blog is about my experiences with hypothyroidism and to swap notes with other people. I was diagnosed in 2009 and am still not entirely well, though I’m much better now than I was. I set up a thyroid patients' support group in London in 2010 and we continue to meet regularly and welcome new members. There's lots of info on the net aimed at thyroid patients, much of it contradictory and confusing. My aim is to provide a more balanced perspective and information from credible sources.
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.