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