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