Please note I don’t have any medical training and you should not use the information provided here as a substitute for medical care. I want to share my personal story because I feel it may help others that have been diagnosed. I wrote this post a while ago, so it’s actually been longer than seven months since the RAI treatment. I will write about how I’m feeling two years on at a later date.
In my last post about my experience of graves disease I explained that I had decided to undergo the radioactive iodine (RAI) treatment. This post will discuss my experience of the treatment. It’s a long post so it appears across several pages that you can navigate using the links in the following list or the page numbers at the bottom of the page. In particular I’ll talk about:
- Basic RAI Information (including a little about the restriction periods for avoiding contact with others).
- My reasons for undergoing RAI treatment.
- What actually happened on the day of RAI treatment.
- How we handled the logistics of the restriction period. Including child care.
- The months following the treatment.
- How I feel about 7 months later (much better).
1. Basic RAI Information
There are good explanations of how RAI works available on the internet, but the best one is probably available from your endocrinologist or the treating nuclear medicine specialist. I urge you to ask as many questions of the people treating you as you want to and also to ask them for reputable sources of information. Here is a brief explanation I found on an Australian state government run site:
“The iodine is taken up by the active cells in the thyroid, which are then killed. Other cells do not absorb the iodine. The radioactive iodine is then excreted in the urine with no reported side effects. One dose is usually sufficient to control hyperthyroidism, but one or two subsequent treatments may be required. Patients should avoid contact with adults for a few days and with children and pregnant women for a longer period.”
My understanding is that the dose of radiation you are given is decided by the endocrinologist and then administered by the nuclear medicine specialist. The size of your dose determines how long you need to avoid contact with other people. It should also be noted that I was told that I should avoid falling pregnant for 12 months. Guidelines about what is appropriate seem to differ in different locations.
(However, from my research for very high doses you may have to minimise contact with young children for up to 20 days and those over 5 years for 14 days. I think it is very rare for someone with Graves Disease to have such high doses, but it’s something you need to discuss with those treating you.)
For the dose that I received I was told to minimise close contact with people over 5 years for eight days, with the exception of my carer or partner with whom I could have closer contact after one day. I think the exception is made with the carer or partner because to be apart from them can be considerably more difficult and therefore it is worth the risk of exposure to that person. Of course, if it is possible for you to organise then you may chose to stay apart for a longer time.
The more difficult restriction for me was the restriction for children under 5 years, because I was the primary carer for a child in that age range and also another child who was barely out of that age range. Minimising close contact means avoiding spending more than 15 minutes within 1 metre (about 3 feet) of another person and maintaining distances greater than 2 metres (about 6 feet) whenever possible. In particular it is recommended that patients sleep alone for the restriction period and that a family member other than the patient be the primary carer for any children under 3 years of age for at least the first 5 days after treatment, preferably at separate accommodation. In my case, that was 14 days of restricted contact with my children. I’ll go into details about how we actually decided to deal with these restrictions a bit later, first I’d like to speak a little about why I decided to undergo RAI treatment.