My experiences with t3 treatment.... part one

To anyone who's noticed how quiet I've been on here since moving house, okay, I'll come clean, it's because I've not been brilliantly well.

This post will only make sense if you know what TSH, T4( FT4) and T3 (FT3) are. So if you don't but are curious, all that is explained here.

I had my thyroxine dose reduced in September, by a tiny amount, didn't notice much difference, then moved house, started to feel a bit rough, put it down to the move, had my thyroxine reduced again and slowly started to sink into a bit of a muddle of unwell-ness, hello again bad hypothyroid symptoms.

Why was it reduced? Well, since I started taking T3 (liothyronine) alongside thyroxine my TSH reading  has been around 0.03 which is very low. My doctors in London seemed pretty relaxed about this but I'm aware that there are long term risks to my bones and heart of having a suppressed TSH, especially after Professor Graham Williams' talk to the BTF London Group last October so I was slightly uncomfortable about it. And although I felt better than I had before starting to take the T3 meds, I still didn't feel 100% well so was hoping that some sort of a tweak might make a positive difference.

So it turned out that reducing the thyroxine did not make me feel better, it made me feel worse. In fact, I ended up feeling quite lost in space. Brain fog descended, I seemed to be in a muddle a lot of the time,  constantly tired and short of time, occassionaly a bit tearful and low in mood, which is not the normal me.

Reporting all of this to my new endocrinologist and looking at my blood test results when I first saw him, which showed my FT4 had become very low in the range, he promptly put me back on my original dose and also suggested reducing the T3 medicine instead - but I protested!!

"No please!", in fact I cried a little bit, I was very, very scared that if my T3 was reduced my cognitive function would go completely down the tubes again, because before I took T3 I simply couldn't think straight, I was really in a mess back then. I didn't want to end up like that again, it's too scary to contemplate. Seeing my distress the doctor agreed just to change one thing at a time and we just upped the thyroxine.

That was back in February. Last week was time for another check up. My TSH is still too low. I still don't feel properly well. I've been ruminating on the stuff I learned at Graham Williams' talk (I am overdue to write more about this event and I will soon, promise) I really don't want my bones to crumble away or to have a heart attack so I was kind of open to the possiblity of reducing the T3, but also still very anxious about the idea.

Clever doctor pointed out to me that when I felt like a cabbage I had an undiagnosed vitamin D deficiency. This has since been picked up on and addressed. My vitamin D is now replete (nice word :) ) When I started taking Vitamin D supplements I noticed a profound improvement in my wellbeing and particularly my mental function. Perhaps that was the problem all along and it may be that T3 medicine is not actually required after all.....

Hmmmm, well perhaps, but I am scared, I am really scared. I am scared of being taken off this medicine that I believe is helping me and I am scared that if I stop taking it but then want to go back on it I won't be allowed to.

So I tell him my fears and he listens and he says, "T3 medicine seems to help some people but we don't really like giving it because it's not physiologically right - your body should be converting the right amount of T3 from the thyroxine you are taking - and because of the problems it can cause, particularly as your TSH is so low. Let's try reducing it, if that goes okay let's try stopping it altogether, let's take things slowly and if you feel unwell again you can go back on it."

Which I thought seemed very fair. So I agreed. He also told me to increase my thyroxine a little, to make up the difference.....

It's now day 5 of no T3 medicine. Guess what, I feel pretty good, possibly better than before in fact....... hmmmm, watch this space.

I'd love to hear from other people who have or are taking T3. It's great to be able to compare notes. Comments on here are always welcome.

Learning all the time. Ever hopeful. Sending smiles.

x

New thyroid research techniques and future treatment....

My loves, it has been too long, I won't bore you with excuses as I have something much more interesting to share..... new news from the cutting edge of thyroid research!! Read on....

On 3^rd March 2012 the London Group held our third Information Event at the Royal Free in Hampstead. The meeting was well attended once again, with two great speakers.

Dr Peter Taylor, BSc MBChB MRCP SCE, based at the Centre for Endocrine and Diabetes and Sciences, University Hospital Wales and recipient of the 2011 BTF Research Award gave a fascinating talk about new thyroid research techniques and future treatment.

Peter explained that treatments for thyroid disorders have not changed for around 40 years and doctors tend to think that this is fine as they are easy to treat, however a significant number of patients are not seeing good results from the standard approach and the focus on TSH levels alone may not always be sufficient.

Dr Peter Taylor addressing the London Group of the British Thyroid Foundation

In some respects, by not addressing this issue, the mainstream medical profession could be seen to have lost control of the situation and there are now a lot of alternative practitioners who are not qualified endocrinologists, particularly on the internet, who may just be out to exploit patients, by offering dubious treatments to those who feel let down by their normal doctors. In some cases these alternative treatments can do more harm than good, particularly in the long term.  

Equally misdiagnosis of thyroid illness as depression or vice versa leads to inadequate treatment and dissatisfied patients. Given thyroid function tests are relatively inexpensive, it is important to make sure the diagnosis is correct, by repeating tests if necessary; as many working hours will be lost to undiagnosed or poorly treated thyroid conditions.

The UK leads the world in the field of public health research, yet there has been a lack of good research in this field. It is clear that more steps are likely to be needed in diagnosis and treatment of some thyroid disorders. The reference range for “normal” TSH is based on population ranges and may not be be an optimal range. Studies have shown that variation within the reference range influencing pregnancy outcomes, lipid levels, blood pressure and risk of cardiovascular disease.  Factors other than thyroid disease can affect TSH readings, such as smoking, or being unwell.

The good news is that some exciting new research, made possible by recent advances in genetics, may mean that patients who are currently difficult to treat could be helped in the future by new treatments that could be available in the next ten years. It is likely that thyroid disease could be one of the first non cancer illnesses to benefit from personalised medicine, where treatments are tailored to the individual’s genetic profile. Already studies have identified new genetic variants that may impact thyroid function, beyond hormone levels.  These may enable us to predict if people may feel better if treated with a combination of T4 and T3. Some patients find that Thyroxine treatment can cause them to feel worse initially. It is possible that in some rare instances thyroid hormones aren’t reaching the brain properly so that blood test results can be misleading.

As an area of research, the thyroid is starting to gain more interest, particularly as public health professionals are realising that both high blood pressure and heart disease risk can be improved by treating borderline thyroid function. Recent successes in optimal use of Thyroxine to improve fetal development and pregnancy outcomes are also helping to generate interest in the research community.

Inevitably medical research is slow and new treatments will take time to filter through but it was heartening to all of us in the room to know that there are researchers taking our conditions seriously and working hard to make things better for us and other patients.

Peter also answered questions for more than an hour, on almost every aspect of thyroid disease and everyone found him to be most sympathetic and knowledgeable.

Our second speaker, Sheila Sturgeon of the Expert Patient Programme CIC gave an excellent talk on self management of chronic illnesses and getting the most out of health professionals. Several of the London Group have now signed up to do Expert Patient Programme courses.  

Our next London event is on 5^th May, 10am – 1pm at the Royal Free once again. I'm hoping to confirm our speaker(s) in the next couple of weeks.  Visit the British Thyroid Foundation website for details of the programme nearer the time and to find out if there's a group near you if you're not in London. As always if you want to come to our next meeting, just let me know. Everyone is welcome.


Sending smiles.

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.

:)

Shifting sands

I’m now in my new house by the sea and loving it. We moved at the end of October. I’m so excited to be here and everything appears to have gone pretty smoothly. But I must admit the move has taken it out of me a bit; that and the fact that I am now working, on a freelance basis, for two different clients, so work has gotten a whole lot busier. I’m pretty tired at the moment.

Mindful that it’s winter again and the last two winters my health went rapidly downhill. Wondering if there’s something up with my Vitamin D levels again, I went to my new GP to ask her to test it which she was happy to do but the results may take up to a month to come back!! That’s living outside London for you. So I’m unsure whether to just up my Vit D dose by myself in the meantime, in the hope it might do me some good, after all it’s just a supplement from the health food store I don’t think I’m likely to do myself any harm, or hang on and find out what the test says.  I want to do things properly and wait for a steer from my doc...

Also torn between changing to an endocrinologist close to home, which is an option, or to stick with the one(s) I see in London. The clinic in London is pretty shambolic, (patients waiting to be seen sitting on the floor / blood test and follow up letter mix-ups, not good really) and I generally see a different registrar each time I go there. But I know them now and they know me. I have a lot of anxiety about moving doctors in case the new ones don’t agree with the regime I’m on and I end up worse off. I’m also totally unsure about whether what I’m on is actually the right thing for me. It’s tricky, there seems so much controversy around thyroid treatment and here I am, over two years after diagnosis and still not wholly well, not knowing if there’s something else that could be tried that might make a big difference for me, I really don’t know what to do for the best...

Oh and my blog is under attack from spammers promoting desiccated thyroid supplements and like most thyroid patient who ever go digging around online for help for their condition and end up bombarded with people pushing this stuff, I do wonder a tiny bit whether that might be something worth trying.  If you see a two line comment with a link to an online shop in any of the comments on here, before I spot it and delete it, please be aware that this is the standard format for these spammers and is just someone trying to sell us all something. Bah, bad spammers, go away!

I spent yesterday talking to some endocrinologists as I was volunteering at the British Thyroid Association’s annual meeting, manning an information stand for the British Thyroid Foundation. 

Happy smiling volunteers on the information table at the BTA Meeting 2011, l-r: Judith Taylor - BTF Editor and Trustee, me - for BTF London Team and Lin Welch - from Thyroid Eye Disease Charitable Trust

They are a friendly bunch, the BTA people and no-one was trying to push anything on me but a couple of them were questioning my treatment to date and they have really got me thinking.

I mentioned in my last post that Professor Graham Williams’ talk at our last London meeting had challenged some of what I thought I knew about thyroid hormones.

I haven’t posted in detail about his talk because with the house move and work stuff I just haven’t had the chance to write it up, yet.

The key thing that he was saying that really got my mind working was that he would NEVER prescribe T3 for hypothyroidism. I am one of those people who takes T3 as well as T4 (click here for more info if you have no idea what T3 or T4 are). The official UK guidelines on treating people state that T3 can only be prescribed by an endocrinologist. I thought that was just because it’s a volatile substance and needs to be managed by a specialist, some GPs apparently were over prescribing it and this can cause bone and heart problems, hence the guidelines.

But Graham’s position, as I understood it, (and he is a world class expert) is that most T3 used by the body is converted in the organs, rather than in the blood stream, and those organs can only use T3 that they have converted themselves, from T4 in the blood, as they only have specific T4 receptors, so having extra T3 in the bloodstream (via meds) is probably not going to have a positive impact on wellbeing.  This despite my experience and belief that it has made a difference for me. 

Plus which, he made a very compelling case for the danger to the skeleton of thyroid hormones being out of kilter. He showed us photographs of healthy bones and bones that are weakened by both hyper and hypo thyroid states.  It wasn’t pretty.

So I said to him, back in October, how would you have treated me then? I was topped up to the max with thyroxine (T4), TSH as low as you’d want it, T4 right at the top of the scale, but I still felt rotten. He said he would have looked for other causes, such as vitamin D deficiency. Well lo and behold, about 8 months after I was started on T3 meds I was also diagnosed with that and lo and behold again, starting Vit D supplements appeared to have as profound an effect on me as the T3, perhaps more!

So now I’m wondering if the Vit D on its own might have sorted me out, with just the thyroxine. But I’m scared to consider coming off the T3 incase my brain goes back to being fuzzy mash it was before I was put on it and I then can’t get a doctor to agree to put me back on it!!

What to do??

Anyway, lots more discussion at the meeting yesterday has got me thinking even more. I will have to post again to share the rest. Sorry this post has got very medical. Let me know if you’ve been in a similar quandary and if you have any insights to share....

Ever hopeful, sending smiles.

Lorraine J

Thyroid and Bones Event Pictures

I'm so happy I can't tell you. We did our second information event today. Professor Graham Williams gave a fascinating talk about thyroid and bones and spent over an hour answering questions on all aspects of thyroid disease.  Broadcaster, Gay Search, of BBC Gardeners World, shared her personal experiences of having a large goitre and full thyroidectomy.

I'm just happy because it went so well. 100% of the feedback forms said that people strongly agreed that the event was helpful and they learned something new. Everyone was really nice. We did really well with donations for the charity aswell and several people have offered to get involved with helping in the future.

Poor Gay had been bitten on the face by something in her garden and had to wear sunglasses as her eye was terribly swollen but she was cheerful, charming and highly engaging - despite her injury.

Graham was so knowledgeable and patient and thorough and lovely and friendly, explaining everything so clearly and going into so much detail and background to really bring his subject to life for us. I will write a post summarising his presentation once I've had a chance to go back through my notes.  I feel like I learned more today than I have in the last year. And some of what I learned has really challenged what I previously thought I knew....

It was so interesting!! And I was so much clearer headed and energetic this time than I was when we did the event back in April. It really brought home to me how much better I am now. Hurrah!

For now I'm just going to share some of the photos from the event. But I promise to write more about today soon.....watch this space....

Professor Graham Williams

Gay Search

Professor Graham Williams and Lorraine Williams (no relation), going through the pre-submitted questions

The Q and A session

Awake!

When did you last go to the theatre? When did you last paint a picture? When did you last read or write a poem? When did you last listen to music? Music at least is all around us and free for the taking, do you really listen, do you dance? Do you love it? Are you paying attention your life which is such a gift, or are you focussing on what’s missing, what you wish you had, things that you might have lost or might have done? I’m not trying to challenge you, I’m just asking the questions. I’m so curious about the people that come and read my blog. I’ll always wonder about you. And last night I went to the theatre for the first time in ages, it kind of awakened something in me and I want to share....

Art in all it’s forms can be transformational and rejuvenating. My father was a musician, he lived to make music and I’m so proud and happy that he had that gift and shared it with the world. He was due to play a gig the night he died. I was so pleased that even though he was unwell and generally pissed off with the world, he still had that wonderful thing in his life and he loved it. He was doing his thing right up to the end and that makes me happy, even though it’s sad that he’s gone. I digress...

So I saw this show last night. It was called Awake – billed as “an epic visual spectacle about one man’s journey to survive. Max is a man in a hurry. Places to be, tasks to achieve, but his life seems to be slipping more and more out of kilter. He can’t be ill, because illness is for wimps.... A story about health, harmony and the hunger to succeed, told in words, acrobatics, music and dance....”

You can see how it would appeal to me. These last two years or so I’ve been on my own journey with illness and that attitude to it resonates a fair bit. I’ve had to learn acceptance, to be vulnerable and to be able to show it, I’ve had to curtail my ambitions and the scope of my activities, I’ve experienced frustration and even desperation at times. And I love a bit of visual spectacle.

This show was produced by a cool woman I met around the time my health started to crumble. I hadn’t kept in touch with her, I haven’t kept in touch with lots of people as I just haven’t had the energy. But another dear friend knows her too and had been invited to the show. We went together.

It was on at Jacksons Lane theatre in Highgate till this Saturday 8^th October. You can check the Awake website for other dates and venues. Jacksons Lane is a cool space, they do lots of good stuff there, Id’ never been before and if you haven’t either I recommend you check it out soon, it’s a real gem. I’m going to miss being able to just hop on a bus to a different part of town and see fabulous innovative art at the drop of a hat (did I tell you I’m leaving London, more on this in another post soon. I digress again... sorry).

We chatted afterwards with the producer, Hege and the creative director, Christopher. I enjoyed the conversations as much as the show itself.

Christopher was inspired to stage a show about illness from his own experience of diabetes, which before he was diagnosed and effectively treated really tore him apart and left him confused, distressed and feeling washed up (I’m paraphrasing here, hopefully he will not feel misrepresented). To hear him say that, as we talked in the bar, a beautiful, healthy looking man, looking so full of vitality and creative energy, it gave me renewed hope that there is indeed life after illness and that we can sometimes emerge stronger and more powerful in the world, with more gifts to share with others, as a result of difficult experiences.  

Hege talked to me about a realisation she had had about vulnerability and language. Apparently the Patagonian word for “depression” is the same as the word they have that describes when a crab sheds is shell and is temporarily vulnerable and exposed without it, during that period of transformation before it takes on its new bigger shell. I loved that! Clinical depression, thank goodness, is something I have never experienced, I’ve had low moods and even dark thoughts but they have always passed quite quickly and I’ve felt comfortable that they have either clearly related to the hormonal imbalances of hypothyroidism or just been reasonable responses to being in the tricky situation of living with a chronic illness. My general disposition is upbeat and cheery about life.

I’ve been taken aback by discussions with medical professionals that often seem to collapse concepts of deep depression with fleeting low feelings which everyone gets. While recognising the benefits of positive thinking and I actively cultivate a positive attitude and calm acceptance to my situation, I’ve been struck by how uncomfortable our culture is with sadness and how much shame is attached to being vulnerable or low. Yet life is meant to be made up of light and shade, we can’t be up all the time. I feel there is an exploration of language and attitudes to vulnerability and illness and the flow of life that our society can have, that will benefit us all by raising our consciousness and helping us be more accepting of those times when we are out of control and going through transformations. Hege is going to be doing more work in this area and I said I’d love to be involved in some capacity. So how bloody exciting is that!

The show was exhilarating. The cast incredibly versatile, the staging sparse but using every inch of the space with spectacular use of a harness where cast members spun above our heads and flew across the stage with wild abandon, throwing  gorgeous shapes in the air, coming together and leaping apart as the high emotions and raw experience of coming face to face with Max’s illness were fully explored. My favourite bit was a totally surreal sequence where Anna-Helena McLean took to the microphone and delivered a virtuouso incoherent genius gabble/near-rap, just off stage and accompanied a tumbling / dance performance led by Max (Oliviero Papi) and Christopher (in a bear suit), joined by Pelle Holst in a devil romper suit, set around a giant multi compartmented wardrobe. Wah! I nearly jumped out of my seat it was so brilliant!

But there were also many more poignant and solemn elements to the performance too - beautiful singing and great dialogue, exposing the brittleness, insecurities, jockeying for position and petty jealousies that overlay the day to day ordinary life of most “successful” urban professionals. Amplified sharp breathing echoed across the stage highlighting Max’s pain and fear  - struggling and powerless in the face of illness while his beautiful wife is unaware and carrying their first child and his friends and colleagues continue to fete him as they always have, as the man who has it all.

Christopher told me afterwards that he felt he needed to use an illness in the show that people could readily comprehend as dramatic and serious, so Max has terminal pancreatic cancer. I think this is a bit of shame and believe that the audience could perhaps relate their own lives to the main theme more readily if the illness was not so specific. I would have preferred more ambiguity around whether Max will live or die and quite what is wrong with him and I think it would be a braver production to choose not to lean on the inherent drama of a terminal cancer diagnosis but to explore the impact of chronic illness more broadly.  

But my overall impression is that this is a great, thought provoking, exciting piece of art and I loved it. I had a wonderful night. I applaud the Awake Project for their vision ambition, talent and most of all for actually making this show happen. How many of us are involved in creating art? I paint a few pictures, I write a little bit. To stage something on this scale, with so many elements and requiring so many resources to make it happen. I can only take my hat off and wish the company every future success in continuing to refine their show and going from strength to strength. Respect.

Awake

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