Radioactive Iodine Treatment Done!

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!

Waiting

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.

Container

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 milk 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.

CatProtection

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.

Hyperactive Thyroid Won’t Behave

I have rearranged this page to place the latest updates at the top.

November 13, 2017

The last few weeks have been a whirlwind.

  • Oct 26: completed my Pain Management Program
  • Oct 30: had double dip endoscopies and a second iron infusion
  • Nov 3: flew to Perth to visit my cancer patient friend (4 hour flight)
  • Nov 5: stopped my thyroid medication
  • Nov 7: back to Melbourne (4 hour flight)
  • Nov 8: dinner with brother visiting from NZ, organised by my wonderful daughter
  • Nov 11: another thyroid function test
  • Nov 13: nuclear scan of thyroid in prep for radioactive iodine (RAI) treatment on Friday.

Tomorrow I have a post-procedure appointment re the endoscopies and on Friday I have my radioactive iodine (RAI) treatment. But that is not all! Reading all that back to myself, I wonder how I am still standing!

The bouts of nausea have been increasing in frequency. I am tentatively blaming this on the whole thyroid treatment changes (stopping meds in prep for scan, thyroid slightly but not dramatically whacky, etc) but really, the jury is still out. I did learn today blood test results can lag behind a little, so the patient can feel a greater degree of “unwellness” than is reflected in the blood tests initially.

I had to leave work at 1:30 pm on Friday, much to my disgust. Yes, I am worried about the next few weeks, but although I could take medication while waiting for the RAI to work, the meds could inhibit the uptake of the RAI – not something I want, really.

My BIG shock for the day was this. Initially, three years ago, my hyperactive thyroid was diagnosed as a multi-nodular goitre with no cold nodules. Today I am diagnosed with Grave’s Disease with one cold nodule that will need a biopsy – before Friday. I want to stress this DOES NOT mean I was misdiagnosed: depending on what is going on with the thyroid at any given time, one condition can mask the other condition. Plus I’ve been on treatment for three years. I’m a layperson, I don’t understand the finer technical points of reading the scans (although I will certainly quiz the radiologist when I see him, just out of curiosity), but I mention it to show these things aren’t always a static situation. Treatment of both is essentially the same, apart from that cold nodule needing a biopsy.

Hyperactive thyroid could explain my arm and quad weakness that I was blaming on my low iron levels. Is it any wonder today I am finding my usual sense of humour around all this medical stuff in short supply?

I have just dashed around to my GP to get the forms ordering a “USS guided FNA” – in layman’s terms an ultrasound guided fine needle aspiration biopsy. I’m hoping I can sneak in to Radiology at lunch time – I’m assured it is a very fine needle!

One person I find absolutely invaluable in all of this is my stellar general practitioner, Dr Rebecca Watt of the Airlie Women’s Clinic. I cannot speak highly enough of her care.  For a patient, battling multiple conditions is very different to simply getting the odd work certificate for a virus. Dr Watt’s approach has been such a comfort to me, I highly recommend her and the practice.

My plan is still, at this point, to be back to normal operations by December 1.

Stay tuned.

October 26, 2017

Had a blood test yesterday to check my iron levels after my iron infusion and before I have my endoscopies on Monday (and by the sounds of it, probably another iron infusion). My iron is still too low.

I have read (on nps.org.au) that this is not completely unknown in patients with inflammatory conditions, which includes little ‘ol me. Even so, the “elimination of other causes” process will continue.

I look forward to a thrilling weekend of endoscopy preparation. As I won’t be able to do much, readers may be subjected to more of my writing!

October 19, 2017

More news. Now adding a Radiofrequency Facet Joint Denervation to my list of upcoming interventions. The professional assessment of my lumbar spine MRI is the pain in my glutes is likely to be the result of the unhealthy looking facet joints. Not a permanent solution, but should last twelve months, if I’m lucky up to two years. Can be done more than once, if it works. Scheduled for February. Can’t say I know a lot about it at this point, I only found out on Tuesday this week.

This will not prevent my return to normal operations scheduled for then end of November.

October 12, 2017

Did my first post-infusion strength workout on Tuesday. Was very happy with the results. Definitely have more energy and strength. Did discover getting up off the bench after a bench press is not something my herniated disc likes too much, so after discussions with my physiotherapist (to confirm my suspicions), I have decided my chest press will have to be in the weight machine from now on, at least for a while. I much prefer free weights, but my back is telling me to change, so change I will.

Other than that, the waiting continues for the next step. Slowly creeping towards the end of November, but I am impatient!

October 5, 2017

The infusion went well (Monday) and I am feeling more energetic already (Thursday). Will be resistance training on Saturday and swimming on Sunday. Clocked up over 8,500 steps today without an issue.

Feeling positive!

October 1, 2017

socialising is important

At the risk of over-sharing, to explain my reduced availability for a few weeks here is a short account of medical complications I am currently dealing with. This also demonstrates that even us “poster girl” patients can’t control everything!

The first complication is my hyperactive thyroid doesn’t want to behave nicely. My current medication is no longer appropriate, due to the risks associated with being on the dose my thyroid seems to crave for long periods of time. So radioactive iodine it is, requiring me to stay away from people for ten days after I take the radioactive dose. I also have to be off my current medication for some days prior: as a result I expect to be a little off colour for a week or two as my thyroid will effectively be running riot.

The second complication, which may or may not be related to the first, is my iron levels have taken a dive. A rather deep dive. I was wondering why I wasn’t getting my usual improvements with my strength training and was feeling tired at the 800 metre mark of my swims: now I know. Investigations are underway to determine if my iron is vanishing into thin air and if so, why. Procedures are scheduled for the end of this month. Iron infusion to tide me over is happening tomorrow! Very excited about that!

As you can see, my autoimmune arthritis is the least of my issues at the moment. One condition can be challenging enough: with co-morbidity, the chances are higher that clear sailing can be disturbed at any time, completely unexpectedly.

I’m still working, but reducing my availability until after these little glitches are resolved. I expect to be back to normal by the end of November. I will update this article periodically during October and November to advise of any changes. If my responses to enquiries during this time are not prompt, those are the reasons.

Wish me luck!

October 5, 2017

The infusion went well (Monday) and I am feeling more energetic already (Thursday). Will be resistance training on Saturday and swimming on Sunday. Clocked up over 8,500 steps today without an issue.

Feeling positive!

 

 

 

Launching Limberation!

Welcome! Limberation is now live!

Stay tuned for weekly articles of interest to people trying to manage the competing demands of a job, family, pets, medical conditions and their own physical maintenance.

Managing the demands of life is difficult enough for most people. Then one day you come out of a doctor’s consultant with a diagnosis and referrals to specialists. Your life just got a bit more complicated – or a whole lot more complicated.  Now you have to fit in taking care of yourself.

You know how sometimes you used to skip breakfast because the mornings were just so hectic and you have to catch THAT particular train or you’ll be late for work? Not so fast. NOW you have to find time for breakfast because you have to take medication and that medication must be taken with food. No scoffing down those pills on an empty stomach – that’s just asking for more trouble.

You’ve been busy the last few years and your exercise regime has fallen by the wayside. Suddenly finding time for exercise is mandatory. But you feel tired all the time now, hitting the gym or even just walking around the block is more challenging that you thought it would be.

I’ve experienced days where just getting off the bed was so painful I didn’t know how I’d actually get on my feet. I also knew once I did get on my feet, once I got moving, my pain improved dramatically. This will NOT be the case for every person immediately: those suffering chronic pain, for example, may need to work slowly to desenitise their nervous system. Just because something works for one person does not mean it work for another. We are all different.

Years ago I spent a lot of time working out – then I got too busy and I let it go. After all, I rationalised, I can get back to it when things settle down. This can be a psychological challenge post-diagnosis: for a competitive person, finding I could only leg press about 30% of what I used to be able to do was demoralising and demotivating. I had to fight that feeling of uselessness. I felt completely incompetent in a gym setting, yet I knew strength training was important for me.

The challenges those of us with chronic conditions face are not just medical. There are social, family, financial and psychological challenges. We have to examine our values and goals and reset some if not all of them.

Learning to pace ourselves can be the biggest challenge. Maybe working full-time is no longer the best thing for us, despite the financial ramifications. Maybe our current career is not helpful to us physically. In my case, sitting for long periods, being stationary, is not pleasant (and that is putting it mildly). A sit-stand desk helps greatly: changing careers to one with greater movement helps much more.

We need to prevent the de-conditioning of our bodies.

Deconditioning

None of this is likely to help us manage our conditions long term.

If your doctor hasn’t already told you to “get exercise” (as mine did), ask if exercise will be beneficial for you.

Then let’s Limber Up to Live Life.