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

My guilty secret...

If you want to think I've got OCD after you read this you can think what you like, as it happens - I don't!

However, and I'm a little shy to reveal this, since I first realised that this illness was going to take a bit of time to sort out I have been faithfully completing a symptoms chart on a daily basis so I can keep track of whether I'm getting less fatigued, more energetic, more clearer headed, etc, over time....

Sometimes when I see my doctor I take along a copy of this chart to try and give my doctor more information about what is going on with me. Usually they quite like that. Of course different doctors can respond in different ways. I had one once who didn't like it at all and was actually quite rude to me. I didn't see her again!

After I got over the worst of the brain fog my chart became a spreadsheet, but originally, when I was first very ill and truly a small sorry fuzzy little thing with hardly no braincells at all that functioned terribly well, it was a very scribbledy hand drawn affair, because that was all I could manage to assemble.

product of my slow coach little brain cells back in 2010!

It was one of the things that made me realise my head was starting to clear when I was able to concentrate well enough to put all my precious symptom data (yes I am truly that sad!) onto a spreadsheet and make it a graph. The guy I see at the fatigue clinic tells me my graph is a work of art! All I want is for it to show some answers.

But the problem with the damn thing is that it never shows a nice clear positive upward curve to recovery. It always comes out as a jagged line, I get a bit better, I do a bit more, I get a bit more tired again, it goes up and down. Slowly over the long term I'm convinced I'm better. Those around me tell me I unquestionably am. But I look at the chart and it's kiind of difficult to read.

Excdel but my jaggedy graph - is still hard to read after the initial definite drop in fatigue!

I guess so much of how I'm feeling is subjective and what I might have scored as a '6' or a '3' six months ago is maybe not the same as what I'd come up with nowadays. Still it's frustrating. I wish it was all simpler.

I've just spent an hour updating my spreadsheet for the last 8 weeks since I saw my endocrinologist last. I've got an appointment tomorrow. I say "my endocrinologist" but actually I have no idea who I'll see because so far I haven't seen the same doctor more than once at the clinic I go to! That's how the NHS works. Weird and annoying. I would like to be able to see the same doctor and for them to get to know me a bit so they can see changes for themselves and for me to understand how they like to be communicated with and for the two of us to be able to collaborate a bit on me getting better.

I don't think I'm even going to take my graph tomorrow. I don't want whoever I see to think "we've got a right one here, crazy graph lady." I'm just going to tell them the facts as I see them about how I feel a bit better but I'm still not right and listen to what they have to say and hear what my latest blood tests results are and HOPE that the appointment will be useful and that there might be some kind of positive action that can be taken towards me continuing to feel better than I do now.  Could my meds be adjusted any more? Are there any other tests it could be worth doing? Is this as good as it's going to get? Do I just have to be patient for a while longer?

OOOghhch it's a slow old process.

I'll let you know how I get on. Sigh.

Defining and redefining moments

Today I had to write a profile for myself to go on the British Thyroid Foundation website. I'd been putting it off for some reason. I realised I just didn't know what to say about myself. It's not that I find it hard to write about myself, partly it was that my brains have been a bit foggy of late, so sitting down to any task has felt like a challenge, but it was more that I just didn't know what to write.

Obviously I've written a profile for on here and that didn't feel difficult. I think somehow, because this was going on an organisation's site and it was about me in my specific capacity as co-ordinator for London activity for the charity, it felt like almost a work thing. And when I've written about myself in a work capacity before it's been very different to this. It's been all, Lorraine has 20 years experience working with top brands blah blah, specialist this, professional that, media, pound signs, business babble.

I said to someone on twitter that it was difficult because since the illness I'm unsure how to define myself. And someone else piped in that it is about REDEFINING. Ah yes. And I've got my head round the fact that I need to redefine who I am and who I'm going to be in the future. It's a work in progress. But today just felt difficult because I had to define who I am right now, in relation to what I'm doing for BTF and why.

I started by reading the other profiles of the other local co-ordinators and they were very inspiring. What a fantastic group of women, all of whom have been doing this longer than me.

This is what I wrote in the end:

"I was diagnosed with an underactive thyroid in August 2009 and soon after it was confirmed that I had thyroid antibodies, meaning the cause of my hypothyroidism is autoimmune disease – Hashimotos.

At the time I was pleased. I expected that the diagnosis and resulting medication would mean that the fatigue issues which had plagued me for years would now be resolved.  That’s what my doctor hoped too. 

However I soon felt worse, not better and I had to take time off from the job I loved, as a corporate fundraiser for a leading cancer charity. I was off for almost 4 months, my health completely collapsed. After over 20 years working in a fast paced career, I had always managed to be successful and overcome any difficulties in my path. It was a massive shock to the system to find myself so debilitated.  I couldn’t think straight, I was tearful and exhausted. It wasn’t like me at all,  I have always been dynamic and upbeat in every aspect of my life and for years I had done my best to ignore the creeping feelings of fatigue which turned out to be the early stages of thyroid disease. Frankly, when I got very ill it was frightening.

Before I’d been diagnosed I didn’t even know what a thyroid was. I set about trying to educate myself, trying to understand what was happening to me and what to do for the best to get better. I soon came to realise that I couldn’t believe everything I read, particularly on the internet. I needed a source of RELIABLE information. I also longed for somewhere I could meet other people with thyroid disease, to learn from them and for mutual support.

The British Thyroid Foundation telephone support volunteers helped me a lot and I was pleased to also discover the recommended reading list from the charity but I was astonished that there wasn’t a BTF support group in London. I vowed that as soon as I was well enough I would start one, because I think it’s so valuable to be able for thyroid patients to be able to meet and connect with each other and to be able to have talks and Q&A sessions with leading endocrinologists.

Medication adjustments and referral to an endocrinologist for specialist treatment have slowly improved my situation considerably but it has taken a long time and I am still not as well as I hope I can be. I also now attend a specialist fatigue clinic and I continue to do my best to feel as good as I can with a healthy diet, gentle exercise, meditation and a positive mental attitude.

As well as volunteering with the BTF I help run a meditation group in Camden Town, it’s free to attend and everyone is welcome so if you’re in the area, do feel free to come along to that: www.openmeditationcamden.com. I will also be starting an Expert Patient Programme course at the end of June 2011, these courses are free too and teach how to manage a chronic health condition.

My career experience, in marketing, communications and fundraising, has been useful in getting the new London group set up but I know I need to be careful not to take too much on. At the end of last year I decided to leave my job to focus on getting my health back on track.

I’m lucky to have the support of a fantastic and enthusiastic group of fellow volunteers, we call ourselves the London Team and we are keen to support further BTF activity in the capital so if you would like to get involved to support what we’re doing, or if you have ideas of your own you need some help to make happen, please get in touch!"

I've submitted it now so hopefully it's acceptable to the charity and will go live on their site soon. Have you found it challenging to redefine yourself with a chronic health condition. Have you had an experience like this where you've had to state clearly who you are and you've felt a bit lost for words! It seems like a changing sense of self is something of a common theme for some of us with thyroid disease, if the conversation on twitter is anything to go by! I'd love to hear what you think.

And do you think the profile works? What else would you want to know, or have I said too much? Let me know!

Thanks for reading, it means the world!

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

Expert Patient Programme

Ahem, it has been some time since my last post. I guess I needed a break after our big meeting. I still have so much to say about that and will come back to it. I’ll share some photos that I now have, in a separate post. The video footage is with a friend of mine being prepared to be put online: I am pretty confident this is going to happen now, each step is slowly falling into place, bit by little bit. Hopefully it will be worth waiting for. J

I’ve had a couple of emails about the event as well which I haven’t yet responded to – if you are one of the people who’s been in touch and not heard back from me, please accept my apologies, I will get on the case in the next few days.

One of the things that was really interesting about our meeting was learning about the Expert Patients Programme (EPP)

EPP offer courses for people with chronic health conditions, to help them manage their conditions and get the most out of their doctors. At our event it was very clear that having a productive relationship with their doctor is one of the things many of us find most difficult and that most of us are keen to be proactive and positive about our situations.

 I had a follow up meeting the other day with Nurcan Cahill from the Programme, along with one of my fellow BTF London Team members who had invited them along to our event in the first place. Lots of us were really keen to do an EPP course together. But it turns out availability is extremely limited.

These courses are free but only available in areas where the Primary Care Trust (PCT) has commissioned EPP to deliver them. Hmmm, I am super lucky because I live in Camden and courses are available here I’m doing one starting on 25^th May, contact EPP if you are local and would also like to take part. But can you believe, Camden is the ONLY London PCT that has commissioned EPP!! I was so shocked and disappointed for people living outside the area who will not be able to participate.

These courses have been proven to improve quality of life for people with chronic health issues - and reduce demands on primary healthcare resources. Why on earth isn’t every PCT in the country using them? Seriously, it’s a scandal. And that’s not a word I use lightly.

However anyone can buy the course book, it looks like you can pick it up very cheaply on Amazon, so that’s an option if you’re interested in knowing more about the EPP approach and you don’t live near me. I am reading it now and am impressed with it so far. Reading the first 3 chapters today I have created a little action plan to achieve my goal of losing a little weight, which I would dearly like to do. I am going to go out every other day and run for 5 minutes (all I’m fit for at the moment), then stretch for ten minutes afterwards and I am going to avoid sugar every other day too (I haven’t got the strength of will to avoid it completely right now though I hope that will change, I am so hooked on chocolate it’s not funny).

I did a little run earlier. Five minutes seems a ridiculously short amount of time to exercise but honestly I felt like I’d done an hour long workout! Stretching out afterwards on my yoga mat and doing some very gentle yoga-ish/pilates-like exercises, I felt very virtuous and could feel I’d got my heart pumping nicely. It’s enough for me right now and definitely did me some good. My challenge is not to do too much because I am ridiculously driven. But hopefully I can regain some fitness and maybe even drop a dress size in time for my cousin’s wedding next month, by adhering to my plan.

I’ll let you know how I get on when I do the actual course too. Or maybe I’ll see you there!

I’d love to hear from anyone who’s done anything like this before, or to know what you think of the idea. Please leave me a comment  if you’d like to, it’s great to know people are reading - and to connect. J

Click here for Contact details for Expert Patient Programme

Initial reflections on our first meeting....

Woooh, my brain's swimming, just been up on the roof doing some pseudo yoga/pilates stuff to stretch out my muscles (can’t do any proper yoga/pilates stuff right now as I haven’t quite got the energy for it, but I’m getting there). It’s a beautiful sunny day. Lovely.

We had our event this morning, so I’m pooped!  Not sure how many people turned up as I think we slightly lost count. That doesn’t mean there were millions, we think about 40 or 50 maybe. But generous souls that they are they gave us some lovely donations and we raised £145.29, including two new memberships for the BTF. And there were some great comments, lots of people saying how much it meant to them to be able to connect with other people with thyroid disorders, to access reliable information and particularly to hear Mark’s talk.

Mark was brilliant, his talk on the UK’s iodine status was fascinating and he answered a huge number of questions. Unfortunately there were so many written questions submitted and he answered them so thoroughly that we didn’t have a lot of time for further questions from the floor so there wasn’t as much two way dialogue or time for attendees themselves to speak as I would have liked to have seen.

Our programme was quite packed in the end, I’ll say more about what else went on in my next post.

We got everyone to fill out evaluation forms and I can’t wait to see what they said on them. Another Team member is typing them up this week so she took them home with her. My husband saw a few though and thought they looked broadly positive.

For my part I couldn’t focus brilliantly on the talks because my brain was a bit fluffy! Which is a shame but I can watch them on video at a later stage, because the wonderful Lindsay and Scott from Refinery Productions captured the whole thing for us on camera. Thank you guys for your incredible generosity in doing this for us! Assuming I can work out how to upload film files you too will be able to see the whole thing in due course!  

Stand by for a video stream, but don’t hold your breath, it may take me some time to do (apparently there will be a few things I need to do with files before the youtube stage so you might need to bear with me).

Once the dust has settled I know there will be lots we can learn from today about how to do an even better event next time.

Several of us were very taken with the idea of doing an Expert Patient course together so we will be looking into that as a possible group activity.

We also gave people the opportunity to vote for what topics they would like to see covered in future meetings. By far the most popular was “how to get the most out of your doctor”.  Many of us, sadly, have experienced communication difficulties at one time or another with the medical profession.

And it was noted that sometimes people with thyroid problems can seem difficult for professionals to communicate with, because we can suffer from impaired cognitive function which might cause us to appear super sensitive, depressed or not very clear about what we want to say.  So this feels like a very hot topic and something I hope we can address to help our group members develop productive partnerships with their doctors and access the best possible care.  It is a shame that the onus seems to be on us as patients to improve OUR communication skills! But we are nothing if not tenacious and resourceful, so we soldier on!

I think an Expert Patient course, entirely for people with thyroid disease, could be a brilliant step towards this! Something exciting to think about!

We already have a date in the diary for our next Endocrinologists talk. Graham Williams from Imperial will be discussing his speciality, thyroid and bones on 15^th October, which I think will be fascinating.

But perhaps we can do more between now and then. A few new people today indicated they might be interested in getting involved with the Team so it will be great to consider our next steps together with possibly some fresh input, at the same time as reviewing today properly.

I will post again when I’ve had a chance to think about it all a bit more, I feel I’m going to have quite a bit to say about this event, but just wanted to  get this up today and say – hurrah! We did it!!

The London Team have got our first event under our belts!

Thanks for reading and for your support and if you were there today – why not comment below on your impressions – I’d love your feedback (especially as I’m still to see those evaluation forms!)

Hope J

Lorraine

Radioactive Iodine Film preview at our event!

Well how exciting!!

Only a few days to go to our event and today we have agreed with the Nuclear Medicine Department at the Royal Free that they are going to preview a new Patient Information Film they're making for

patients considering having Radioactive Iodine Therapy treatment.

Our attendees will be invited to give feedback in advance of the final edit! The completed film will not be available for at least another six weeks.

• The aims of the film are:-
• To help patients understand the information that they are given before considering the treatment
• To inform patients about how safe the treatment is and how easy it is to take.
• To help patients understand the simple precautions which protect their friends and family for the first few weeks after treatment.
• To provide a resource that patients can refer to if they want to review their precautions or any other information they have been given.

This is a short post because I've been doing quite a lot of preparation stuff for Saturday already today and I'm a bit tired :) but I thought it would be good to put a note of this most recent development.

We will also have literature and a representative from Expert Patient attending. It's all coming together. Are you coming along? You will need to email me to book a place.

I'll add some  links to this tomorrow. Now I'm off to cook some pasta for my tea. :)

A new group for London - all set for our first event

A few months ago I vowed to set up a support group for thyroid patients in London. When I was first ill I really wished there was somewhere I could go to connect with other people who might have some inkling of what I was experiencing. But there was nothing. I spoke to one of the telephone support contacts at the British Thyroid Foundation and she was really nice and helpful but I still felt very isolated and confused by what was going on.

I spent quite a bit of time on thyroid discussion boards and I certainly found a community there but I got fed up with it over time, some of the people on there were very forceful about their opinions around the correct treatment for my hypothyroid and as it happened their views didn’t always tally with what my doctors were telling me.  So ultimately that became quite unsatisfactory. The more I learned for myself the more I came to realise that I couldn’t just accept what these self appointed amateur experts were telling me. I found myself wading through a real hotchpotch of different and sometimes opposing positions.

And I noticed that a lot of them just seemed to be total gloom merchants and scare mongers. I remember one telling me when I first logged on, that I must expect that my doctors would be unsympathetic and that I would have to fight them every step of the way. Well I’m glad to say that hasn’t been the case although I know that some people do have a very rough ride with their doctors and I have actually had one or two hiccups with mine along the way (see previous post about the crazy letter one sent me the other month for example!). On the whole, my doctors have been good and I am more inclined to value professional medical training and experience over someone who just happens to have the time to dominate an online discussion board.  

I’d pick and choose what was helpful for me on those boards and some of it was but I ultimately I realised that the original advice from my doctor made a lot of sense – reading random medical opinions on the net is not advisable!

I reached the conclusion only to trust information from accredited sources. Not to say I won’t listen to anyone other my doctor, I’m always open, always interested in what people have to say. But my b*s**t detector is pretty finely tuned these days.

Once I started to feel a lot better I started this blog and I also started to put the wheels in motion to set up a support group, working with the British Thyroid Foundation whose links with the medical profession and impeccable professionalism made them the obvious choice.

I’ve been lucky enough to find some fantastic people who are now working alongside me to make this happen. We have been holding planning meetings in the wonderful Royal Festival Hall foyer since December (top tip if you need an informal meeting space for small groups in London and don’t mind being in an open plan space, it’s super central and very nice).

London BTF volunteers at our third planning meeting

Our first information event is now less than 2 weeks away, 9^th April, 10am – 1pm at the Royal Free in Hampstead. We’re expecting a good turn out, there’s been lots of interest already. Eminent endocrinologist, Mark Vanderpump, is speaking, unveiling the results of the recent UK Iodine status study which he chaired. Judith Taylor, thyroid cancer survivor, BTF Trustee and editor of the BTF Newsletter is also speaking. A wonderfully generous filmmaker has offered to come and film the talks so that we can hopefully to put them up online afterwards.

We’re excited to be working towards creating a space for a mutually respectful and positive dialogue between thyroid patients and medical professionals in London, and a space where thyroid patients can connect and share their experiences as well as access good quality information.

If you want to come along please drop me a line to book a place. It would be wonderful to meet you there.  

I’d also love to hear about any experiences you might have had with other support groups, of any flavour, what are the key elements for success, are there any potential pitfalls you’d advise us to look out for? I’d love to hear from you.

Thanks for reading. J

Shhhhhh, don’t say the STRESS word...!

I had a thought provoking session at the fatigue clinic yesterday, discussing stress. Have I told you that as well as seeing an endocrinologist I am now also attending this specialist clinic for fatigue?

It’s interesting. At the moment I spend an hour there each week doing cognitive behavioural therapy, that’s looking at how I think and behave with a view to improving my fatigue levels. I am highly resistant to the potential implication that my illness could be “all in the mind” but that’s not what they’re saying, just that everything is connected and there may be some mental patterns locked in my subconscious somewhere that might be perpetuating some of my symptoms. My thyroid blood tests are all now optimised and perhaps my health issues are not just down to my thyroid.  

Well I’m an open kind of a girl and up for discussing stuff....it’s good to have the chance to talk to a professional about what’s going on with me on a week to week basis.

We identified today that I am very resistant to the idea that I may be stressed.

I am fine with recognising that I have stress in my life and even that I have had very considerable stress in my life in the past. I accept that stress is normal and everyone has stress. If I am honest with myself I can even admit I’ve rather worn the stress from my childhood almost as a little badge of honour, “...look at me I had all that to deal with but haven’t I done well.”

But I know that I have quite a deep rooted emotional need to believe that everything is okay and under control in my world. It’s really difficult to accept that I am affected by stress or that I am stressed. I resist the idea of being stressed (as opposed to having stress, yet dealing with it admirably) as though it is a shameful label I don’t want anyone to put on me.

Of course there are times in my life when I know I have been stressed and I would admit that I was, but for the most part this is only the case when the stress I am under is very extreme.  For example; when I was waiting for my results of my finals at university I insisted I wasn’t stressed but I developed a rash over my entire torso. The results came in, the rash disappeared same day, go figure!

For the last four weeks, for my “homework” from the clinic, I have been tracking my stress levels. I have not as yet recognised that I have been more than very slightly stressed at any time.  Most of the time I believe I am not stressed because I am having a nice time, relaxing or doing fun things, which I am fortunate to be able to do because I am not working at the moment.

And yet, I have noticed that my muscles are tense most of the time and I have to accept that feeling tension in my muscles is most likely a manifestation of stress. So maybe I’m more stressed than I appreciate. ..

I would say that my life is not stressful at the moment, my life is delightful, I’m not working, I can do pretty much what I like with my days (obviously limited by my energy levels), I am not short of money (for which I feel exceptionally lucky), I am not short of social opportunities, I am loved and I know it.

However, I am in a kind of limbo land in relation to my health. I don’t have the energy to pursue many of the things I would like to do right now and I don’t know to what extent I may regain the energy levels and clarity of mind that I used to have, so I can’t really make plans for the future.

Perhaps I am more anxious about that I have admitted to myself. It doesn’t seem unreasonable to suppose this could be the case, when I stop and think about the situation I am in.

Hmmmmmmh. I’m not going to berate myself for the fact I may have been denying my true stress levels and the possible impact they may be having on my fatigue levels. Whatever I’ve been doing or thinking is neither good nor bad, right nor wrong, it’s just how things have been/how things are.

However, I believe that the more I can recognise and respond to reality, rather than my beliefs about how things ought to be, the more powerfully I am likely to be able to deal with it. And that includes the reality about my state of mind, as opposed to what I might like to tell myself about how I’m feeling.

Today I have realised that my level of stress may not just reveal itself in the thoughts I have, it can also surface in physical ways. And being someone who is mentally exceptionally “strong” it makes sense to me that if I am stressed my body might signal the fact before my mind picks up on it. So I’m going to be paying more attention to what my body may be trying to tell me in the next week.

Do you listen to your body? What does it tell you? What is your relationship with stress, do you pay attention to it and how do you know if the levels in your life are healthy or not?

I know this post is a departure from what I promised but I wanted to put these thoughts out there for discussion....as always I will be thrilled to get any comments...

The truth comes calling at 3am

Wide awake and wondering why I can’t sleep and then it comes to me, I’m seething! I’m outraged. I’m pissed off. I’m seriously upset.

Ah. That’ll be why I was thinking earlier that I absolutely and urgently had to have some new jeans and why I’ve been trying to work out where I can get £2,500, to pay for cosmetic dentistry (when I have absolutely no money coming in at the moment so it’s a ridiculous and impossible idea,  beyond frivolous and self indulgent).

It’s displacement thinking isn’t it. My brain has been trying to resist the fact that I am unhappy by distracting me with thoughts of “things” that it’s trying to convince me will make me happy. Lucky I don’t have squillions of pounds to squander, this is the same distorted thought process that ultimately leads some unhappy rich people down a path where they end up becoming totally demented and going overboard on plastic surgery (don’t worry, I like my nose!).

(If the above logic isn’t working for you check out this great blog post, on recognising our deepest needs and not trying to fulfil them through consumption.  I read it earlier and it was like someone had put the lights on for me! )

I got some wonderful news earlier today. An appeal I’d set up when I was working has now ended and an ex colleague kindly emailed me the results. I was thrilled, it has been a big success and it wouldn’t have happened if it wasn’t for me.  Hurrah!

So that was a revelation, realising how pleased I was. Honestly I was totally delighted.  And I was quite surprised that I was so enthusiastic. I’ve been telling myself how happy I am not to be doing that job any more (which I truly am) and I’ve been hinting to myself and others that when I am finally well enough to start pursuing paid employment again that I quite like the idea of doing something completely different, maybe something more creative and “softer.”  So I feel that perhaps I learned something about myself, by recognising what a serious buzz I get when something big that I’ve visualised and created comes to fruition.  

Then, I couldn’t help it, I started to feel pissed off that this wonderful career of mine, as was, is now off the table, as it were. That I can’t do that kind of thing right now, that perhaps I won’t be able to again. And that people who were my peers are over taking me at a rate of noughts in terms of career progression. I feel like I’m on the hard shoulder, being left behind!

And I’m blooming well SEETHING. It’s not fair. And I know life isn’t fair and no one ever said it was and why should it be and plenty of people are worse off than me and I have lots to be thankful for and ALL OF THAT. But really I’m just cross and that’s why I can’t sleep.

I just can’t believe that there isn’t a way to get my brain working properly again. I refuse to accept that I won’t be able to think clearly and coherently in any kind of consistent fashion again, this can’t be right!!! I can’t imagine not being taken seriously in a work context ever again. How interesting, that all of this is going on at a subconscious level and it’s taken 3 hours of insomnia for it to surface and make itself clear!

One thing about brain fog is that I think when I become more aware of it, that may be a sign it is starting to clear a bit...Well you know me, I am always a looking-on-the-bright-side kind of a girl, now I’ve had my little internal rant, normal service can be resumed!

....When I finally did get to sleep last night (you don't think I'd post my insomniac thoughts in real time do you? This bit is being written in the morning), I had another one of these vivid dreams I’ve been getting for the past week or so. This time I decided to test drive a juggernaut and drove it all round the streets where I grew up in Glasgow before deciding that it was a bit tricky to handle and probably too large for my needs! So there you go – analyse that! I’m still laughing. Also I feel more energetic today but I will follow doctor’s orders and keep resting for now. Could this all be good...?

Thanks for reading. I’ve been asked to do a post about when I was first diagnosed so that’s next on my list but I just wanted to squeeze this one in. Do leave a comment if you’d like to, as long as you’re not trying to sell anything I’ll be thrilled to hear what you think of this latest post, or if it brings anything up for you.

Love and light

Lorraine

Sweet dreams are (not) made of this....

Well, get me, posting again already, keep up people!

I woke up this morning expecting to be super tired as we had a four hour BTF London Network Team meeting yesterday and I got home fit to drop. We’d planned two hours but ended up going off on a few tangents. It was a good meeting but by the end I was finding it difficult to stay focussed. Poor little tired foggy brain cells.

But no, I feel okay. I’m delighted, but now at rather a loose end as I’d expected to spend the day feeling shabby and having to rest.  The sun is shining!! I can’t believe it!! What shall I do??

I can’t go skating because all the outdoor rinks are now closed and I don’t want to be indoors.  Oh I know, I’ll photograph all my shoes so I can stick the pictures on the shoe boxes in my cupboard and be able to find whatever pair I want to wear more easily in the future – yes, really. I think I might...

Oh what joy to have the energy to be able to consider these options!

I wonder if things are finally starting to shift on the old fatigue front...I feel I’ve been a bit more active generally this week and I I have been having some very vivid dreams which might mean my brain is also getting a bit more active! (well that’s one theory, alternatively it could be descending psychosis, see below and let me know what you think...)

Last night I dreamt I went dancing with my adorable husband and it was lots of fun. If I can’t go dancing for real any more (or at least not very often) I am happy to be able to go in my sleep at least!

But earlier in the week I had such a scary nightmare I woke up squealing with fear! I don’t think I’ve done that since I was about six! Fortunately I wasn’t scared any more as soon as I woke up because the object of fear in my nightmare was so truly ridiculous, I have to share it: I dreamt that I and a friend were being terrorised by an evil occult coat hanger called “The Commander”. It was really scary, I guess you had to be there! I told someone else about this dream and she asked “so how did this coat hanger get about?”  I love that other people’s minds are equally as bonkers as mine sometimes J. The answer is that it was attached to my hand and yet seemed to have an evil energy all of it’s own!  What do you think, has my brain gone into meltdown?

See, if I was clever I’d dream about something with more commercial appeal that could be turned into a series of best-selling children’s books and I’d never have to work again.  Sadly I feel “The Commander” is not going to bring me fame or fortune any time soon.

Anyway, I’m in good spirits, if I do the photographing shoes thing I may share a link so you can all share and marvel at my collection, or advise me which ones I could actually live without and ought to go in the bin. I could probably do with some advice.

Update on the British Thyroid Foundation London Network Team, we are now six, the meeting yesterday was great. We now have two wonderful new volunteers as well as the four of us who were at the January meeting. We are all systems go for our Information Event on 9^th April and have some great ideas for a follow up in September. The Team are now committed to meeting monthly to plan activities for the BTF in London. Let me know if you’d like to help out, or if you are interested in attending the main event. lorrainewilliams@btf-thyroid.org

Thanks so much for reading, it’s great to be able to connect with you on here. J