Monday, 23 May 2011

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

Friday, 6 May 2011

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 25th 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