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

Never Give Up - Thyroid patients London meeting, Feb 9th 2013

So I woke up late, precisely 20 minutes after I was supposed to be on my train on the way to London for our event. And there’s only one train an hour. Yikes.  Fortunately I’d been aiming to be there very early, so I still got there before kick-off, just.

the pretty Kent countryside, seen from my train, 9th Feb 2013

My wonderful fellow volunteers had everything under control when I arrived. I am so lucky to have found such an amazing bunch of people to help run the BTF London Team. I always get a bit worried beforehand because I’m never sure how many other volunteers I’ll have but so far it has always worked out perfectly, we don’t always have the same people on the Team, as some have to reduce their involvement due to health or other commitments from time to time, which is totally fair enough, but other people always seem to come forward and lend a hand. I love the Team. They are all amazing.  I do worry though that the group is such a fragile thing, held together purely by our collective good will.

We had 76 attendees confirmed so there was quite a bit to do, setting out the literature,  putting up signs, registering everyone who arrived, manning the information table, testing the A/V set up, etc. Fortunately the Royal Free catering team were taking care of our refreshments. Doing drinks for so many people at these events would just be too much for us to handle ourselves so we bite the bullet each time and pay for catering on arrival and in the break, counting on donations to cover the cost. 

 

Professor Colin Dayan arrived just after me, as did our other patient speaker. Phewwew. We started more or less on time and the next 3 hours flew by, seeming all to go very well.

I did a talk about my own experiences of psychological symptoms and managing my psychological wellbeing with thyroid disease then our other patient speaker did the same. Our stories were very different but both had similar themes of having been very unwell, struggling with it, feeling out of control and very unnerved/frightened by the whole experience, ultimately finding that a combination of mainstream treatment (which we had both spent a lot of time being suspicious of) and mindful self management have led us back to being able to function and feel pretty well, though in both our cases it has taken quite a while.

Then Colin Dayan gave his talk which was excellent and well received, though it had a lot of graphs and data in it which were sometimes a little challenging to follow. Colin took an unexpected but very interesting approach to the subject. He basically asked us to put ourselves in his shoes and pretend we were doctors, for the duration of his presentation. Then when we had the Q&A session, he said, we could go back to being patients and he hoped a fruitful dialogue could be had, to help work out some of the conundrums around thyroid disease and psychological wellbeing.

He then set about presenting the facts as far as they are known according to current research, including that of his own team in Cardiff. He shared that research in this area is a global effort, with teams around the world looking at different aspects and sharing information over a period of years, slowly building up knowledge and seeking answers that will help thyroid patients.

It seemed that his team have a particular interest in a subgroup of patients which initially I felt I belonged – hard to treat hypothyroid patients.

As far as I understood the data that was being presented, it seemed that there is, potentially, a significant proportion of hypothyroid patients who are being treated with thyroxine yet are more likely to be depressed than either the general population or hypothyroid patients in general.  Some of the questions researchers are asking are:

• Is this coincidental or somehow linked to thyroxine treatment?
• Could combination treatment (with T3 and T4 meds) be better for these patients?
•  Is there a genetic marker that could help identify these patients and get them on optimum treatment sooner rather than later in the future?

The BTF London group were fascinated to learn about this work and so grateful that the scientific community is taking some of our issues seriously and investing time, money and effort in trying to come up with some answers that will ultimately help thyroid patients.  The applause his talk received was heartfelt.

Colin is seeking funding for more research. I don’t know how much he needs, it’s probably lots. As some of you know, in a previous life (oh, it seems so long ago now), I did some significant fundraising for cancer research. Maybe one of these days helping thyroid researchers get the funds they need to do more work in this area might be something I could do. To be honest though it seems like a daunting and not particularly appealing task. I know from my past experience just how expensive serious medical research can be. And fundraising really doesn't float my boat as much as doing other things does. Still, food for thought.

The other thing is, while I recognise the value and importance of work like this and I applaud those who do it, it seems to be just scratching the surface and I know how long it takes for medical research to deliver changes for patients. There are so many issues, beyond how much and what kind of thyroid hormone to give a patient, that affect our psychological wellbeing.

For myself, I know that treatment with Vitamin D and subsequently changing my diet have been highly significant in my recovery. Everyone is different of course, what worked for me is not necessarily going to be helpful for someone else. But so few patients are steered to consider dietary changes or even tested for Vitamin D deficiency by their healthcare professionals. And so few are offered counselling or CBT, or if they’re offered it the potential benefits may not be explained properly and it can come across as if they’re being told their illness is all in their heads which is the last thing we need to hear when we are doing the best we can to take care of ourselves and stay sane. It seems there remains a vast gap in proper medical knowledge around psychological wellbeing, gut health, vitamin D and other potential autoimmune connections.

Equally, perhaps mainly because of stretched resources and cultural issues, the experience that so many patients seem to have of not being listened to and not having their experiences properly acknowledged, never mind effectively addressed, by their doctors,  was reported by attendees yesterday as being a huge factor affecting their psychological wellbeing while ill.

As another thyroid blogger (@hypo_man) put it to me on twitter the other day: 

“being denied treatment has impacted my psychological wellbeing. Self-doubt this has caused is unforgivable”

I know the new NHS Constitution is supposedly working towards a massive culture change in healthcare delivery in this country which sounds great and I believe needs to happen, but I have many misgivings about whether that whole agenda is actually just a smokescreen for government cuts. And anyway, the issue here is not just about the paternalistic and dismissive attitude that some doctors exhibit towards some patients, thereby making their situations worse not better in some cases - it’s actually about knowledge standards and consistency of care for patients who’s lives are being impacted to a ridiculous extent, in some cases over a very prolonged period of time.

It was interesting that Colin’s research measured only depression. Brain fog, which is entirely distinct and seems to be a major concern for almost every thyroid patient I talk to, didn't appear to have been considered at all.  I had very foggy brains for at least a year, but did not score on any measure of depression, because - amazingly - I was never actually depressed. 

So I feel a little sad after yesterday. Although thrilled the event went so well and feedback was so generally positive. And although I’m incredibly grateful for Colin’s work and to him for giving up his Saturday to come and talk to us and for being such a total super star, sharing so generously and answering so many questions so thoroughly and charmingly. He really was a great guy.

It just seems medical science is a long way from being able to make a very meaningful difference for thyroid patients who struggle and we simply have to continue fumbling in the dark, doing the best that we can, trying different things, thinking positively, keeping an open mind and being patient, for the foreseeable future. At least I can happily report that, for now at least, by doing all those things I seem to have recovered a good degree of physical and mental wellbeing. I can think clearly, I have lost weight, I can exercise, I feel good overall.  I celebrate that.

At least the good doctors will acknowledge that they don’t have all the answers and are prepared to work collaboratively with their patients to try and find the best solution or combination of factors that will make the most difference for each of us.

With thanks and good wishes to those good doctors I’m referring to and very special thanks to Professor Colin Dayan for yesterday.  Let’s never give up. 

A brave new world, giving feedback to my doctor

Today I did something I've never had the confidence to do before.

Let's start by reminding ourselves who I am. A fairly assertive woman on the whole. Some might say more assertive than most. I'm Scottish for a start and after more than twenty years living in England I've come to realise that culturally the Scots are generally more upfront than the English tend to expect. If I've got something to say I think of myself as someone who will generally say it. Occasionally friends will thump me on the back and say how impressed they were that I spoke out about something other people had been keeping quiet about and that needed to be said. Naturally outspoken, that's me. And I believe passionately in the power of giving and receiving feedback as a fantastic way of bringing about positive change. 

Yet, I have held back on giving a great deal of feedback to my various doctors over the last three years because I have been too afraid. 

I've been afraid that if I gave feedback or complained about things I was not happy about, that my treatment will be compromised, that I will be viewed as a complainer rather than as a vulnerable patient with valid care needs. That the professionals I perhaps should complain about will resent me, that they may even spitefully discharge me and refuse me treatment. I've been afraid that the precious and very limited time I get with my health care professionals could end up becoming an adversarial discussion, focused on their insecurities and need to defend themselves rather than working to find solutions for my debilitating symptoms.

This may seem silly, but I have spoken to so many thyroid patients who sadly have had very bad experiences when they have tried to raise concerns about their care. I have treated all the healthcare professionals I have dealt with with the softest of kid gloves. As I've said before, I find my self using "every inch of my professional communications skills" in each appointment, to try and keep them on side and not allow them to feel threatened by my stubbornly hard to treat condition. Call me a scaredy cat, I don't care, I've been ill, I needed to take care of myself. 

I think on the whole most doctors are good and do their best by patients. I am vehemently against the scaremongering and doctor bashing that goes on on many so called thyroid patient advocacy sites. We need to have good relationships with our healthcare professionals and to respect their expertise. However, I acknowledge that there are too many cases (one case would be too many) where patients who desperately need help are treated, frankly, appallingly, for whatever reason. In some cases it seems that some GPs are not as knowledgeable as they should be about the treatment guidelines for hypothyroidism, in many other cases it seems that doctors are highly stressed and short of time and not giving the attention to the individual patient's care that is needed. Often patients feel fobbed off and frustrated and in some cases years can go by with their activities of daily life severely affected as they languish under ineffective treatment and lack of support. This needs to stop. 

I've had a few unfortunate experiences since my diagnosis. Some I've shared on here (remember the outrageous letter I got from UCH that couldn't go unchallenged as they'd put in writing that I was so tired and forgetful I'd stopped taking my medication entirely, which was nonsense!), many I haven't. Like I said, I don't want to be seen as a complainer and if I complained about everything that has not been right this blog would perhaps have rather a different flavour to it.  I know the effect that reading endless complaints from other people (usually on those other negative sites referred to earlier) has on me, it makes me feel anxious and comes across as counter productive. Negativity is not the way to improve anything. People have a tendency to stop up their ears to criticism, if given it has to be given carefully and selectively, if you want the other person to take it on board. 

So now, ta daaa! I feel much better. And I have my new endocrinologist in part to thank for this (new since the start of this year). He is the one who persuaded me to trial a reduction in my T3 medicine and then to stop it entirely. He did this very gently, taking into consideration my fears of becoming unwell again as I believed the T3 was helping me. He explicitly told me I can go back on it if my health deteriorated without it and he gained my trust. So far so good. I am glad I listened to him. Coming off T3 meds has been a revelation.  I realise that I have less joint pain and I my energy levels and temperature both feel more normal without it. I hope being on it for so long has not set me up for long term bone problems. 

I say I only thank the endo in part because I also believe that changing my diet has had a very significant impact on my health overall and it is coincidence that the two major changes happened around the same time. When I was on thyroxine only before (aug'09 - July'10) I was not well at all. Now I am on thyroxine only and also gluten free, low carb and eating very little sugar I feel pretty good, so I think the extrapolation that the dietary change is significant makes sense (though I accept it's not proven and I may be wrong).  And I'm none too impressed that this course of action was never seriously suggested to me by any of my doctors, I had to discover it for myself. But that's not what I complained about today!

The reason I complained today is because I recently read the new NHS Constitution and also had a couple of very interesting conversations with the newly appointed Director for Public and Patient Voices at the new NHS Commissioning Board.  You may scoff but I found both totally inspiring. I am very concerned about resource levels in the NHS but I believe that the new constitution outlines a vision and determination  to transform it in a way that has a chance of turning out to be very positive for all of us. And one of the things that this transformation is dependent on is a culture of feedback.  Patient voices need to be heard and can make a real difference.  Doctors and patients should work in respectful partnership and both sides need to take responsibility for what they can change and make better. 

I'm not even going to bother telling you what I complained about. Not in detail anyway, it's not that interesting. I'll just say that I had an experience of trying to contact my doctor which was frustrating because he basically didn't respond and I ended up being given medical advice by his secretary which I believe was perfectly good advice and was in line with what I believed was the right thing to do, so I'm doing it, but I felt that as a level of care from the clinic the whole thing was not what it should have been. And while I'm an assertive and relatively knowledgeable patient and so was able to navigate the situation and come away with a solution which I believe will be fine, I dread to think how someone less confident or knowledgeable may have fared, or felt. So I told his secretary to give him the feedback that I was not impressed (which I doubt she'll bother to do) and I also told PALs, to be sure he got the message.

I did it because I felt well enough to do so, whereas in the past, when I was a little soggy brained poorly thing, complaining was just beyond my capabilities, and because the NHS Constitution tells me it is my duty as a patient to give feedback so that doctors can reflect on the care they are giving and perhaps change how they operate in the future. It's all about trying to make things better for everyone. 

I'll let you know if he discharges me, or gives me a hard time about it when I see him next! (in January.)  I do have a teeny bit of residual fear but hope that I'm just being silly. Hopefully it won't be an issue and perhaps the next patient may have a better experience if they have a concern and contact the clinic about it as a result of me speaking out. 

What do you think? Have you ever complained to your doctor? What was your motivation? What response did you get? Was it worthwhile? Have you seen the Patient Opinion site and considered using that as a way of giving feedback? Have you read the NHS Constitution or otherwise tried to get your head round the massive new structural changes taking place in our NHS? Please feel free to comment or leave any other feedback below. 

*waving and smiling*

Getting better all the time. :) 

Hope

Learning about radioactive iodine treatment - Updated with links

My thyroid is underactive: hypothyroid. The other side of the coin is being overactive: hyperthyroid. From what I’ve heard being hyperthyroid is even less fun than being hypo and it can be more difficult to treat. I’m pleased to say I’ve not experienced it and I hope I never do.  

But in the interests of learning more about thyroid disorders in general and to support the Royal Free Nuclear Medicine Department, who supported our British Thyroid Foundation London patient information event last month... I went along to the launch of two new films about radioactive iodine treatment for hyperthyroidism today, along with a few fellow BTF supporters who were also interested.  We sat together and had the chance to chat to each other as well, which was lovely.

The Nuclear Medicine Department have created these films in order to provide patients with all the information they need to be able to make informed choices about this treatment option and to ensure that they know what to expect and how to take care of themselves and those they come into contact with after the treatment, if they have it.

The films were very well made, I was impressed. I know that a lot of people find the idea of radioactive iodine treatment very scary and I think the idea of providing information as a video that can be watched over and over again and shared with friends and family is a great idea.

There’s so much to take in and my own experience of thyroid disease  has been that sometimes it can be difficult to process and hold on to even quite simple information. (I get muddled sometimes just making an appointment with the dentist or hairdresser - oh the shame of it!) It’s infuriating, but there’s no getting away from it, for some of us at least, this illness appears to sometimes impair cognitive function. And being faced with something as potentially scary sounding as “radioactive iodine treatment” might well be pretty stressful for some people. Being stressed and feeling unwell is not the ideal situation for absorbing complex information. So being able to go back and revisit the information in short film form, as many times as you need to, until you feel you properly understand it, sounds like a good idea to me.

I think if I was facing radioactive iodine treatment I’d be very reassured by having access to this film and I think it would also be helpful for those close to me to understand what it’s all about.

The camerawork was excellent, showing the hospital environments and particulars of the treatment very clearly so that patients can feel well prepared for what they are going to experience. And the voiceover was very clear and informative with a reassuring tone of voice that avoided coming across as in any way patronising.

I learned lots today. Here are some of the things I picked up:

Radioactive iodine treatment has been used safely for effectively treating hyperthyroidism since 1942.  It’s an established mainstream treatment, tried and tested.

The best possible outcome is that your overactive thyroid will slowly become less active until it functions normally. Sometimes it will become underactive and you have to take thyroxine but this is seen as being less problematic than continuing to be hyper. Sometimes the treatment has to be repeated. It is usually successful.  

After treatment you will be given instructions about managing the risk of the radiation for other people around you. It sounds like this is not difficult to do and the risks are not high, but you do need to be careful. For example you can’t sleep in the same bed as your partner straight after treatment and although you can have sex you wouldn’t want to be at it for too long, say more than an hour! Restrictions around proximity to other people and pets can apply for several weeks but don’t sound too onerous. Each patient gets their own tailored guidelines based on their particular situation.

I’d be interested in seeing some stats and was talking to the lead physicist,Danny McCool, about this, we agreed to follow up with each other to see if there is a good source of statistics on the treatment that patients who want more information could look up.  Not everyone wants to know everything but for those of us who do, accessing quality information we know we can have confidence in is really important! Especially when there is so much on the internet that is sometimes of dubious provenance!

He told me he had only come across one patient in twenty years who had a bad adverse reaction to the treatment but I don’t think this would include patients who end up hypo and are not happy. There’s a question mark over follow up and what data is collected after treatment. I’m hoping to find out more about this. It’s all interesting stuff even though the treatment is not relevant to me personally, right now, and most likely never will be.  

You can view the films here and for double measure here is a link to the BTF Quick Guide to Radioactive Iodine Treatment for Hyperthyroidism.

Learning all the time.

I’d love to hear from you if you have any experience of radioactive iodine treatment, or any thoughts you’d like to share.  I promise to reply to all comments. Thanks for reading. It means the world. J