Thyroid Patient Voices, Feb 2014, London event write up

Most of the attendees at the Feb 2014, BTF London Group meeting
thanks to Darren Holman for taking this picture

Thirty of us attended the British Thyroid Foundation Patients Voices meeting at the Royal Free in Hampstead this weekend.  It was amazing, as these meetings always are. Sadly it may be my last one. I told BTF in January that I will be standing down as London Coordinator after this meeting and since then I’ve been trying to arrange for another coordinator to carry it on. Though there are lots of other London volunteers now, who have got involved in the group since it was set up, no one else has thus far said they feel confident to take over running things.  And I’m not surprised, it’s a lot of work, which is why I’m standing down.  I’ve been doing it for three years now and it’s time to move on. I’ll continue with this blog and if the London Group continues I expect I’ll continue to have some involvement and I certainly anticipate staying in touch with the many wonderful friends I’ve made. I hope there may be other ways I can support BTF. But enough is enough.  Being a local coordinator, especially for our capital city, well it’s a big job. I can’t continue to justify the amount of my time it takes.

I’ll be meeting soon with the other London based volunteers to see what we can come up with in terms of a plan for the future.  Watch this space for updates. At the moment we have dates in the diary with the Royal Free for future meetings to take place in May, Sept and November (details on BTF website) so I do hope those meetings will go ahead. Time will tell.

On Saturday everyone had a chance to say a bit about themselves and their journey with thyroid disease to date. Some were newly diagnosed and slightly anxious, seeking information, what to expect and what could they do to help themselves. Some had been ill a long time and had some bad experiences but were now at a point when they were relatively well, a couple were very disillusioned with the medical profession but most, it seemed to me, had found doctors they could work with, who were supportive, even though they may also have had some previously who were not very good. Some people there were really struggling. I think we all found it helpful to be together and share our experiences.

Judith Taylor, chair of trustees for BTF and also the editor of the BTF newsletter and thyroid cancer booklet etc, so a very knowledgeable lady, who told her personal story at one of our previous meetings, came along, which was great. Although we didn’t have an expert speaker for this event it was good to be able to refer some questions to Judith who knows so much.  

We like the Patients Voices events as much as the Information Events, it’s good just to be able to talk to each other.

The key issues that came out of our first group discussion and were identified as subjects for further exploration, in smaller groups after the break, were:

1.     Managing symptoms (lifestyle and diet, etc)

2.     Getting the most out of our doctors

3.     Psychological Wellbeing

4.     Having a Career with Thyroid Disease 

Each group then fed back their key insights and issues to the group as a whole.

One interesting action point that came out was a suggestion to BTF to develop a leaflet for employers to help them understand thyroid disease and how they can support employees with a thyroid disorder. One of the attendees is an employment lawyer who deals with disability law and she and Judith are going to take this idea forward which I think is a great initiative and many members welcomed the idea enthusiastically.

It was also interesting to note that many attendees had quite high powered jobs, as I did too, once upon a time.  Hence the discussion group we created about having a career with thyroid disease – this was a major concern for many of us who felt our capacities to perform somewhat diminished and find ourselves sometimes struggling to manage our work lives. I worry often about the millions of thyroid patients who are perhaps less naturally dynamic than this self selected and very proactive group who have all sought and found help for ourselves – and yet are still often in difficulties. I do feel the NHS – or someone - should be doing more to provide these sorts of groups more proactively to a wider group.  I would love to be making this happen but I have to draw a line under how much of myself I am prepared to give.

The comment I kept hearing – and I could identify with, particularly harking back to when I was very unwell -  was “I’m so glad to hear I am not the only one having X or Y or Z experience/symptom and now I know I’m not going mad!”  Being able to meet and chat with other thyroid patients was just wonderful, as it always is.

Everyone really enjoyed the discussion groups. It would have been good to have had more time, but running an event like this is tiring so I have always limited them to half a day and I think that’s been the right thing to do, for my own and the other volunteers’ wellbeing.

Anyway. I’m happy that we had another good event. Thanks to all who came, particularly those who helped make it happen.   Who knows what will happen next with this group. Hopefully we can find a way for it to continue.

Home again and reflecting on another Information Event

What an interesting event.

left-right: Emma Thomas, Lorraine Williams, Mr Fausto Palazzo (and in background slide, Alaska Blue, Emma's gorgeous and beloved rescue sled dog, who featured in her talk, as a great source of support and inspiration through her illness)

Thanks to all who came along and to all who helped out and to our speakers and to the Royal Free for hosting us and the great catering team who did our refreshments and to those who have sent lovely feedback afterwards.

One person texted me yesterday to say:

“thank you for working so hard to organise such an enthralling lecture.”  

 I love these meetings. So much work goes into them but it is so worth it.

We learn such a lot and it is so good to meet and chat to other thyroid patients.

Thyroid surgery is not actually particularly relevant for me to know about. As someone with an underactive thyroid, as opposed to thyroid cancer, Graves disease (overactive thyroid disease) or a very enlarged goitre growing down into my chest, I won’t ever need thyroid surgery, unless something highly unexpected happens sometime down the line.

But I still enjoyed learning about it from eminent Consultant Endocrine Surgeon, Fausto Palazzo. And I enjoyed hearing from patient, Emma Thomas, who had her surgery more than 20 years ago, when she was just 21, even though she actually had a bad experience with complications, her story was inspiring as she has learned so much about how to manage the condition surgery left her with, hypoparathyroidism. And many of her lessons were relevant to anyone with a chronic health condition who wants to take responsibility for being as well as they can be.

We had been planning to have a third speaker, Louise Davies was going to give a talk on how yoga can be beneficial for people with thyroid disease, but I was concerned our programme was over full and our speaker was concerned about timings as she had to be somewhere else straight after our meeting, so we agreed to rearrange her for a future date (tbc) and we had a short relaxation session instead. That was lovely too. We’ve done relaxation sessions at previous Patient Voices events but this was the first time we’ve done it at an info event and it really worked beautifully. More of this in future I think. 

We also shared photos of our summer activities – the London 10K, Jill Liddington’s walk from Yorkshire to London and the London Group summer walk from Broadstairs to Ramsgate.  Some of our group had also been to a follow up session with the researchers at Imperial who wanted to canvas the views of thyroid patients on changes to how data is being used in the NHS.I hadn’t realised how busy we’d been till I stopped to pull all the information together.

In a couple of weeks BTF has 30 walkers taking  part in the Carrot Walk in London (as well as more walkers at events in Birmingham and Glasgow) organised by the charity Fight for Sight. And next year there’s going to be a special meeting in Leeds for parents, carers and children with thyroid disease. So we promoted both of those upcoming events too.

We finished with another epic Q&A session.

I’ve a lot to write up. And donations to bank. People as ever were very generous.

   

And I’m quite knackered, it’s a 150 mile round trip for me to get back to London these days and it’s a tiring day as you can imagine. But it’s all good. I’ll post again soon with write ups of the talks and some of the Q&As. 

If you came to the meeting and would like to share any comments on here please do, I seem to be very low on comments on these days though I know lots of you are reading the blog, please don't be shy - all comments are warmly welcomed! 

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

Tips for communicating with your doctor (Guest Post)

I have been sent a wonderful guest post for this blog, by someone with some great advice for anyone having a difficult time engaging with their GP - who kindly wrote it up following an earlier article I wrote on here - where, amongst other things, I mentioned that I sometimes find my GP's communication style a little challenging to deal with. You can read that original post here (it has a great soundtrack too!)

A lot of the suggestions were things I think I already know and believe I am already doing, but there are some extra little gems in there too, things I might not have thought of before. Here are the tips I have been sent which you may also find useful:

Tips for talking to your doctor:

Just as you have off days, or are more emotional at certain times, so too your GP may experience similar.  She's human like everyone else.  So if she seems hostile put it down to her having an 'off' day.  But make a note of the day of the week and time of your appointment for future reference.

On next appointment, try starting the appointment by briefly asking her how her day has been going.  You'll get a sense if she's stressed or not, before launching into your health issues.  Also she might appreciate you asking her how she's doing, and so she'll mirror your attitude possibly for the rest of the appointment. 

If hostility continues at that 2nd appointment, double check afterwards if appointment week day and time is similar to last appointment - if so, then something might go on with her on that day and time frame each week and so make a note to yourself never to make appointments around that time frame in future.  If timing is different, then just note the day and week again.

On third appointment definitely pick a totally different day and time - maybe morning appointment.  Might be a bit of an inconvenience for you, but she might be fresher and not so worn out.  Start again by asking how she is doing before getting in your health issues.  If hostility continues, then mirror her posture.   So if her hands are folder, then fold yours, etc.  Then once you are locked in similar position, slowly start to relax your body and position of hands, arms, etc.  She will mostly likely subconsciously mimic you, and that may get her to relax.

One other thing, don't talk to her with arms folded or slouched.  It's subconsciously picked up by the other person that you are close minded and stubborn.  May or may not be true, but brain interprets it as a hostile position.  I personally like to sit with my arms folded, because it warms up my hands, and didn't realise how this might be interpreted.

I'm aware of this stuff because I've been on negotiation training courses where they give body language tips on face to face negotiations.  You can read some info about this here.   

A couple of other tips:

if hostility continues on third visit, bring someone along with you next time as an advocate (e.g. your husband or close relative like sister/brother/mother/father).  Just by having another person in the room, it might make GP a little more objective and less subjective.  Also if you interpret hostility, you can ask the person with you afterwards if they interpreted similar or not from GP.  You might find out their interpretation is different to yours, and because you trust them, you can talk openly with them about perceptions and maybe there's something you can communicate or think differently when with your GP in future.  If they agree GP is hostile, then consider changing GPs - you are the consumer after all.

 you might want to buy a voice recorder to bring with you to GP visit - assuming GP is OK with you recording the visit, then just switch it on during the visit.  This is good for 2 reasons - (1) you can concentrate on the visit and asking questions without getting distracted about taking notes on her advice which you can listen to later on at your leisure, and (2) you can listen to the appointment at a later time to see if your impression of hostility holds or changes (after a cooling off period you might find she wasn't hostile but it was something you incorrectly latched onto during the appointment)

get comfortable with silence and use it to your advantage.  Don't think you have to keep talking.  Ask a question, and then just wait for the GP to answer.  Sometimes they need 30-60 seconds or so to think and answer properly.  Don't rush that, just sit quietly waiting.  30-60 seconds will seem like a long time but it is only a minute or less.  If they ask a question to you and you need time to think it through then delay talking back until you've thought out your answer thoroughly in your mind, even if that means a bit of a delay when you answer. 

Another I learned about only a few years ago, but it's extremely powerful and really simple.  It's a male/female thing.  Men tend to talk in 'you' statements.  Women tend to say 'I' - problem with that is women tend say things like I have a problem, or I need help, etc.  Subconsciously the other party interprets that as they don't own this issue or problem.  But if you subtley turn your sentences into using 'you' then the other party will then subconsciously take ownership of the issue or find a solution.  I read about this in a book about managing workload.  I thought it was a bit of mumbo jumbo, but I was in a really desperate work overload situation with my boss so I decided to try it.  We'd had several conversations before but nothing ever changed.  What I did after reading that tip was outlined on paper all my work tasks, how many hours it would take to get them finished vs my normal work time, and then I handed the paper to my boss and asked 'what will you be doing about this?'  The topic about my work and tasks was not new but the response was totally different just by tacking on that last 'you' question - the response I got from my boss was he would take away my information and come back to me with a solution.  Two days later, he reassigned 25% of my work projects to someone else.  Absolutely amazing!  A couple of months later, my husband was having a problem with an unreasonable client who wanted more work done than what was originally agreed and without paying extra fees.  I told him about this 'you' tip, and he did similar - he outlined the options which were basically to pay more for extra requests or stick to the original brief and original costs.  He finished by asking 'what choice do you prefer' - the customer totally backed off and was much more reasonable after that.  I now tell everyone if you have to complain, or you are in disagreement with someone, try not say statements with 'I' - flip it around to incorporate 'you'
Last tip - practice the conversation you plan to have with your GP ahead of time - think through possible couple of ways she might respond (both good and bad from your perspective), and then think through how you might respond to each of those responses.  Just by visualising the conversation ahead of time in all it's various ways it might go, you'll feel more comfortable to handle whatever happens during the real appointment. 

(With many thanks to the guest author of this article who wishes to remain anonymous) 

This was one of the topics discussed at our May meeting in London and I hope to have notes from that session to share soon too. Watch this space! 

Thyroid Hope

Patient Voices on Psychological Wellbeing, May 2013

"I could talk about psychological wellbeing all day on this lovely couch"

The previous post introduced the Patients Voices meeting we held in London on 11th May. This post shares the notes from the breakout discussion group which looked at Psychological Wellbeing with a thyroid condition. 

With many thanks to the participant who has kindly typed these up and included the links to the two articles which help illustrate some of the points the group explored.

Psychological Wellbeing, Discussion Group Notes:

We talked about coping strategies people have for helping manage their psychological wellbeing with thyroid conditions.  

One person has been on anti-depressants for just under 6 months and it has transformed her life.  She did have adverse effects the first couple of weeks but was warned about this by her doctor and stuck with the prescription.  One interesting note is the antidepressant has a warning note it should be not be given to thyroid patients but the doctor is still prescribing the medication. 

A couple of people talked about concerns if long term lack of treatment for thyroid conditions might affect brain function generally.  Some in the group had suffered untreated for years, they think in hindsight. 

Also when the doctor does realise there is an issue with the patient's thyroid, they don't say enough about coping with how people may FEEL with this condition. 

There was a bit of a discussion about the differences people are feeling between overactive and underactive thyroid conditions, but we didn't talk a lot about that, and I don't have any detailed notes about it.

One person talked about her issues with general physical weakness.  She talks a lot to herself to keep her spirits up.  Also she's learned to pace herself to bank her energy.  

Working and raising children is an added stress.  If people have the opportunity to not work, then they can rest more during the day.  Also if you work, you'll try to hide your symptoms from co-workers which is an added stress.

For many, there was a feeling of years wasted.  Too often people compared themselves to others and thought they hadn't accomplished as much.  One person keeps a journal listing anything she does and completes.  She refers to that to help her realise she is getting things done.

I mentioned research I've seen in the past where the human brain is wired to remember negative experiences much more prominantly than positive experiences. The theory is this goes back to caveman days where that memory trait helped people to survive.  One way to combat this bias is to keep a scrap book of positive things you did or experienced. That way you can read that to balance out your memory better.  I can't find the original article anymore, but here's 2 articles on the internet I found just now that indicate similar technique:

Article One - Journaling and sharing can enhance happiness 

Article Two - The memory bias

 Someone mentioned that coping techniques generally for any chronic illness can be useful, so don't just look for articles about thyroid conditions.

Relaxation and exercise are really helpful to people in the discussion group.  Also breathing and meditation were found to be helpful.  Trying to 'be in the moment' was good too.   I mentioned some research I've seen that walking and getting outside in nature is really good for health and mental wellbeing.  There's research indicating the effect of walking can be equivalent to taking antidepressants.  Also a friend of mine and I realised as part of losing weight that the biggest battle with exercise is getting out the door initially.  Once you pass that hurdle you do exercise like walking and you enjoy it - even 5 or 10 minutes is good.  So we thought you have to do whatever you can to facilitate getting out the door - like keep your walking shoes and exercise clothes handy/nearby the door.

Coming back to doctors, people said that doctors generally don't explain enough what could happen with regard to thyroid conditions.  They don't seem to pool knowledge.  Also advice is not holistic - you have to advocate for yourself.

It's also variable how people's conditions are picked up correctly by doctors.  With some patients the doctor figures things out quickly and with others they wait years for the condition to be recognised correctly.  It also makes a big difference if the doctor is supportive. 

There seem to be lots of different opinions amongst different doctors and also lack of follow through by doctors on other related health issues.

When doctors more clearly say what's happening or what to expect with the condition, then the patient feels more psychologically stable because they understand more what is happening to them. 

Sadly  some doctors  don't seem to be concerned about quality of life for patients with thyroid condition.  Also thyroid conditions are not viewed as a major illness. 

Lastly, it was noted that the group on Saturday is really rare and very treasured by attendees.

Patient led workshops, how we did it....

We held a meeting at the Royal Free in Hampstead on 11th May 2013. We called it Patients Voices and we had about 35 thyroid patients attending, with a range of thyroid conditions and varying levels of experience and knowledge about them. Most were London based but others travelled from as far afield as the Lake District and Liverpool.

some of the volunteers (patients and friends) who made this event happen:
clockwise from top left: Theresa, Lorraine, Claire and Karen

We now have an excellent format for these kinds of meetings which you are welcome to copy if you want to do something similar yourself. Here is the programme:

British Thyroid Foundation support meeting, 11^th May 2013 

10am – Registration and refreshments 

10:05 – Introductions – Who are we with thyroid disease?
·       Everyone is invited to sit together in a circle and share: our names, how we found out about this event and what we are hoping to talk about today, those who wish to can also share what thyroid condition we may have and how we are feeling today.    

11:15 – Relaxation session – those who wish to are invited to participate in a short guided meditation before the break. 

11:20 – Announcements 

11:25 – Break, refreshments will be served and you are invited to choose a breakout discussion group to join after the break 

11:50 – Discussion groups – we will break into smaller groups to explore those issues which have been identified as being of most interest. Eg: Psychological Wellbeing, Getting the most out of our doctors / Managing symptoms...Questions for future speaker topics etc.   

12:40– 1pm The groups will feed back on the key things they discussed and any actions they have agreed which they’d like to share with everyone, for inclusion in a report for the British Thyroid Foundation website and Lorraine’s blog.

1pm – close   

In the first session we identified several common themes that were of interest to most of us and so the discussion groups after the break were as follows:

• Diet and Lifestyle
• Psychological Wellbeing
• T3 - what's it all about? And how do we access reliable health information?
• How to get the most out of our doctors
• Spotting and managing Symptoms

We used volunteer facilitators from within the group who had appropriate skills and had agreed in advance to lead the break out discussions.

Each discussion was lively and fruitful. I will be sharing the notes from each of them in posts to follow.

Patients Voices on Psychological Wellbeing discussion notes are now here.

Patients Voices on Managing Symptoms due to go live shortly:

Comments welcome and please share these posts with anyone you think might find them helpful, whether they are a patient or a healthcare professional.