Don’t stop moving! Yes, swallowing a little radioactive capsule can be a bit scary, but my advice is not to catastrophise the event and lock yourself away. A very few patients have reactions, which you will be warned about, but my experience has been as smooth as silk. How well it actually works is yet to be discovered, but I’m hopeful of a good outcome.
As I have eleven days off work now I am going to catch up on my exercise! (Edit Nov 28 – see update at end of this article). The last week or so has been quite challenging with my thyroid doing whatever it felt like. To quickly recap, the process is:
- Go off the hyperthyroid medication
- 5 – 7 days later have a nuclear scan
- Capsule ordered from supplier
- A few days after nuclear scan, capsule is administered
Readers who have kept track to date on Hyperactive Thyroid Won’t Behave will be aware I was trying to fit in a biopsy between my Monday nuclear scan and my Friday radioactive iodine consumption.
As it turns out, once on the table for the biopsy, it was determined I didn’t met the criteria. A nuclear scan is a functional test, while the ultrasound is the structural test. The two need to be read in conjunction – once they took a look at my thyroid with the ultrasound, they were unable to confirm the nuclear scan suggestions, so I escaped. No cold nodule confirmed, therefore no biopsy.
Mind you, while the clinicians (of various disciplines) were busy making phone calls all over town to confer, I was sitting in trepidation, robed in yet more very attractive medical attire as you can see below. If I look like I’m thinking “what next?”, it is because I was!
That was Wednesday! Thursday I really wasn’t well and left work early (again). This was the most difficult part for me, the not feeling well and therefore taking time off work (as I mentioned in my last update). I slept very badly on Thursday night. Was this because I was a little worried about the treatment, or was it typical hyperthyroid sleep disturbance? I certainly didn’t feel worried, so I’m going with the latter. By then I had been off my thyroid medication for eleven days.
When I got to work Friday, I was told to go home. I had originally scheduled the capsule taking for 5:00 pm, the end of the work day. Given I was told to go home (they were right, I’d had very little sleep!) I called Nuclear Medicine to see if they could do me earlier.
Well, usually they could – but not on this particular Friday as the capsules had not yet arrived. But were on their way. So I trotted over and waited.
The capsule arrives in a little green bottle with a radioactive material warning sticker.
A couple of weeks before I had received an information pack outlining the food restrictions for the week prior and the isolation restrictions for specified periods after treatment. The isolation periods depend on the dosage. As I had 15.7 mCi, I am stuck with the longest isolation times.
I talk about the information below, but not in totality – if you are having this treatment, MAKE SURE YOU READ YOUR PATIENT INFORMATION BOOKLET! I’m talking in general terms to give readers a feel for the process.
The food restrictions are around ensuring a low iodine diet for the week preceding the treatment. I am assuming, in my innocent patient mind, this is to ensure when we do take the capsule, our thyroid says something along the lines of “OMG, gimme, gimme that iodine, I’m STARVING“. The formal documentation says, “In order to ensure that the radioiodine is properly taken up by your thyroid tissue…”, but I like my description better.
Not allowed were: bread or other baked goods, milk or other dairy products, fish, egg yolks, soy products, green beans, iodised salt or stuff with bright red food colourings. Meat alternatives such as vegetarian sausages were also not allowed.
I was allowed meat (beef, pork, lamb, chicken) egg whites, homemade bread (made without iodised salt), breakfast cereals, fresh fruit, vegetables and unsalted nuts.
Beer and wine were OK, but coffee and tea had to be black.
I was eating bananas and cashews for breakfast because bacon and eggs on toast wasn’t allowed (plus I don’t bake bread) and how was I supposed to eat cereal without milk or yoghurt?
Fast for at least two hours prior to treatment and at least two hours after treatment. It was recommended to me I fast for four hours after treatment. I was STARVING (after a banana and cashews for breakfast and the rescheduling meant no lunch) so I didn’t make it to exactly four hours.
I have to stay away from children under five years of age and pregnant women for 20 days. Stay away means:
- avoid spending more than 15 minutes per day within one metre of another person and maintain a distance of greater than two metres whenever possible
- Sleep alone, abstain from physical relations
- Avoid kissing.
The restrictions apply for 14 days for non-pregnant women and others over five years of age. Work restrictions depend on what sort of work you do, how close you work with other people and so on.
I have to do things like double flush the toilet (men should sit to avoid splashing – that made me giggle).
There are rules around washing bed linen and food preparation, most of which is not a concern as I live alone. The pamphlet includes twenty FAQs covering such questions as going to the movies, receiving visitors at home, catching taxis and using public transport.
The person administering the capsule spends quite some time with you to make sure you understand everything. Mine also understood my concern for my cat’s welfare and suggested I buy gloves to handle her. So I did. You also need these to pick fresh fruit and vegetables at the supermarket, although I had done a supply trip on Thursday night.
Plus she is not allowed in my room at night. She has a special snuggly bed I bought a while ago in preparation for this event.
I have been worried about the fact this treatment can take three months or more to really work and I have also been feeling so bad without any medication at all. I can’t take three months off work! However, the latest advice I have received is that after four days it is OK to start back on my old meds temporarily – all I have to do is call my endocrinologist if I feel I am not well enough to work without some form of treatment. That is comforting. It also means I will hit my target of resuming Limberation work at the end of November!
So how am I now? Pretty darn good really. See for yourself!
If overseas readers have trouble with my accent, that was about midday, just over 48 hours after my consumption of the radioactive material. I had already walked 7,000 steps going to the supermarket (yes, I kept two metres away from people). I feel perfectly fine, no adverse affects at all. I did not vomit, I’ve had no swelling to speak of and no pain. It occurred to me today I haven’t had a nausea attack either, but that may be merely because up until today I did not do too much. Yesterday it poured with rain here, so walking wasn’t an option and I didn’t want to try going to the gym in case I contaminated gym equipment. I did feel a little weak on Friday afternoon.
I’m monitoring my skin as it seems to be improving now I am off the medication I’d been on for the last three years. If that continues to improve I will share the details another day.
So! Onwards and upwards! May the little capsule beat my thyroid into shape and may I again be full of energy!
Edit November 20: Yippee! I can go swimming today! All the FAQs didn’t cover swimming without contaminating the pool, or returning to the gym. First thing this morning I called Nuclear Med. I can swim today, gym in two more days. Capsule day is Day 0, today is Day 3, gym will be Day 5.
Edit November 28: I may perhaps have been a little exuberant! Then again, that IS me. This week has been challenging – a lot of the time I feel fine, then the lightheadedness/nausea will overcome me. Some days have been worse than others. Yes, I have anti-nausea medication. Yesterday I gave in and rang my endocrinologist who has recommended I go back on my thyroid medication at half the dose I was previously on. My blood test yesterday showed my TSH was very low.
If I am not improved by next week, we will start looking for other causes. I still feel fine most of the time, it is just this darn lightheadedness/nausea that is a problem. I am also heat intolerant, probably due to the Grave’s Disease, and this last week has been around 33 degrees Celsius. We had a cooler day yesterday and then back up to 29 today. I think this has complicated the whole thing!
How I am feeling may well be unrelated to having stopped the thyroid medication in preparation for this treatment, but given it is the one thing that has changed, we have to go through the process of elimination.
Again I stress everyone’s experience will be different. I certainly can’t complain too much, I’ve been walking and swimming, just not as much as usual. I think that’s OK given the circumstances! By yesterday I had been off medication for 22 days and the radioiodine just doesn’t work that fast (unfortunately).
I am back to work tomorrow and hope to manage a full day. Fingers crossed.
This article is written specifically from the patient perspective and should not be interpreted as any form of medical advice.