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.

A Tale of Two Fountains

We are different now. Some of us will regain our pre-illness selves, some of us have an unknown prognosis, some of us know we will never go back. For the moment, all of us are changed from our old selves.

I think of the fountain above as my old self. I think of the fountain below as my new self. Or visa versa, it really doesn’t matter.

Fountain

Just as these are both beautiful and different fountains, in both incarnations I am a useful, valuable person. I just do things a little differently these days. Well, yes OK, some things I might do a LOT differently. So might you.

It is easy to feel hopeless, useless, incompetent and a whole host of other negative words when we face chronic pain or fatigue/lethargy. When we have to set aside time to self-manage our health we may feel guilty because we are not doing other things friends or family may think we should be doing.

Look at the fountains more closely. One shoots water into the sky using, I imagine, quite a lot of pressure to achieve the height. The second fountain does the complete opposite: water gently falls from many small outlets. In both fountains the water is successfully circulating through the system. Both fountains bring pleasure to visitors. Birds stop and drink. Grass grows around them. So it can be with all of us.

Yes, we are different now. With the right support and guidance we can live a meaningful life, despite the pain and/or the fatigue.

Most of the normal people around you will not understand, especially if you have no visible evidence of illness. No-one can see my friend’s cancer tumor. No-one can see my fatigue. No-one can see the pain another friend suffers from fibromyalgia, This was brought home to me personally this week, when I was diligently recording the calories in a mini muffin at a work birthday afternoon-tea. “Oh”, my colleague said, “you can work that off in five minutes, don’t worry about it!” No, I can’t work it off in five minutes because I can no longer do that level of exercise. Yes, I do a lot of exercise, but gone are the days when I could eat anything I liked. Because I don’t look sick, people don’t comprehend the self-management we need to adhere to in order to live the lives we want. We cannot expect people to “get it”, but we can set appropriate limits.

We are still beautiful fountains. We just function a little differently these days.

Environment

Why Do Our Bodies Attack Us?

Why our bodies attack us in the form of autoimmune (AI) diseases is still unknown. There has been much research and there are correlations, links, hypotheses……but no definitive cause has been found.

Some of the studies I have read over the years have looked at:

  • gut bacteria
  • smoking
  • stress
  • genetic predispositions
  • pollution
  • diet
  • processed foods
  • links to medications we may have been on for other conditions
  • lack of exercise
  • B lymphocytes
  • environment

Some AI diseases are local (i.e. single organ involvement), others are systemic. Co-morbidity (patient has more than one condition) is reasonably common, about 25% of patients. The rate of co-morbidity is increasing, as is the number of conditions a patient may develop.

Although it does me absolutely no good to ponder about WHY I have the conditions I do, I ponder anyway. Most patients probably do!

I can tick off several items on that list: I’ve had a reasonable amount of stress in my life, I used to smoke (quite heavily by today’s standards), I may have a genetic predisposition but am unable to confirm that, I live in a major city so am certainly exposed to pollution. Like everyone else, I am exposed to our rapidly changing environment.

“Our gene sequences aren’t changing fast enough to account for the increases,” Miller says. “Yet our environment is—we’ve got 80,000 chemicals approved for use in commerce, but we know very little about their immune effects. Our lifestyles are also different than they were a few decades ago, and we’re eating more processed food.” Should prevalence rates for heart disease and cancer continue their decline, Miller says, autoimmune diseases could become some of the costliest and most burdensome illnesses in the United States.

Source: Questions Persist: Environmental Factors in Autoimmune Disease

It isn’t just the chemicals. We are destroying our soil and our water. Both vital aspects of our food chain. Pop across to my book review earlier this year of Julian Cribb’s Surviving the 21st Century for more details. The Adani mine proposal in Queensland is most likely a health disaster waiting to happen. I look at the photo above: which environment might be healthier?

Yet many people do not develop AI diseases. Do they have a natural resistance?

Are all the different diseases really just different expressions of one disease?

So many unanswered questions.

I do think we have changed our natural world so much and so fast. We live entirely different lives than we did a hundred years ago: faster paced, less exercise, exposure to many things that didn’t exist a hundred years ago.

We also died younger: perhaps these diseases did exist, we just didn’t recognise them or live long enough for them to bother us. Yet many of these diseases do not worry about age: young or old, so many succumb to an out of control immune system irrespective of age. Consequently I’m not a fan of that theory.

It is estimated a hundred years ago humans got five times more exercise that they do today, just from living their lives. Office jobs were a rarity, not the norm. Movement was a natural part of life, not something we were encouraged to do for thirty minutes a day.

“Sitting is the new smoking” has been a mantra for a while, but now studies show standing is not the solution either. Movement is the key to good health, but we have developed a civilisation in which movement is not happening enough. We sit or stand without movement in so many jobs.

Sleep is another lifestyle concern. Most of us don’t get nearly enough. We watch too much TV, have the iPad or our phone on our bedside table so go to sleep way after sundown, yet get up at 5:30am to get that 30 minutes of mandated movement in the gym before 8 hours sitting (or standing). Rinse and repeat.

For those of us already managing AI conditions, (the pain, the financial impost, the lifestyle restrictions) finding the cause may be too late for us personally. For those coming after us, I do hope science finds a solution. Soon.

I do recommend counteracting as much as we possibly can. Eat healthily, sleep well, MOVE, avoid processed foods, give up smoking, minimise stress. Science has given us ways to manage many of these conditions reasonably well, however we can help. There is no point in my taking my prescribed medications every morning if I undermine the efficacy by my lifestyle choices.

While the scientific jury is still out, I’m looking at AI diseases as having a multi-factorial cause. I don’t believe I can rid myself of my conditions, but I can sure as hell give my body the best help I can.

Resources:

Multiple autoimmune syndrome

Autoimmune diseases (a good intro from the Australian Society of Immunology and Allergy)

Recent insights in the epidemiology of autoimmune diseases: Improved prevalence estimates and understanding of clustering of diseases

 

 

How tough is it to get moving?

You may be asking yourself “How tough is it really, to get moving?” This may be moving again or starting from scratch. I’ll be honest, it may be tough-ish. How tough (or easy) will depend on many aspects: your specific condition, were you diagnosed early and therefore received appropriate medical care early, your pre-diagnosis level of activity, the medications you are on, the symptoms you specifically experience, do you have a chronic condition or are you in recovery from treatments such as chemotherapy.

The aim  of moving is to prevent de-conditioning, which I spoke about in Launching Limberation. Specifically here I am referring to pain management, but the benefits extend beyond this.

My Journey

I’ll share some of my own journey but as you read please be aware your situation may be entirely different. I do use time, distance and weight in this article to provide a sense of progress. Different people, different situations, different numbers, different timelines. What applies to me may not apply to anyone else at all.

Thankfully, I wasn’t completely starting from scratch – while I’d had an activity hiatus for roughly four years, I did have a gym junkie background to leverage. Or so I thought. In the beginning it certainly didn’t feel like I was leveraging anything!

Because I was diagnosed with two different autoimmune conditions at once, my medical team advised we stabilise one condition (hyperthyroid) before attempting to treat the other (autoimmune arthritis). Fatigue was a major problem for me in the beginning. Coping with getting to and from work, work itself and home life was draining what energy I did have. There was basically nothing left in the tank in the early days.

At the Starting Line

When I did start, I started very slowly. I did five minute walks four times a day. It didn’t take me long to realise I felt better when I moved. Pain and stiffness receded very quickly once I was actually MOVING. I increased to ten minute walks, three times a day. Finally I got to twenty minute walks, twice a day. I also moved as much as I could during the working day: sitting was hell. Even now, writing this in my home office where I do not have a sit-stand desk, I will not sit for long. No amount of activity is too small to start.

I didn’t do any strength (resistance) work at all in the beginning. I added some swimming: gone were my 2.5 km sessions: my physio was advising I swim 250 metres. I mumbled and grumbled that 10 laps wasn’t worth getting in the pool for, but I did stick to her advice the first time. The inflammation was also in my shoulders, meaning I had to strengthen my shoulders: be able to do 20 prone shoulder rotations (each side) daily with a 2 kg weight before I was allowed back in the pool.

Resistance Work

I wasn’t until late 2015/early 2016 I got back on the weights. I’d always liked the leg press, but had no idea what I should try to start with. Prior to the autoimmune arthritis and the hyperthyroid diagnosis, I’d been diagnosed (by MRI) with meniscus tears in my left knee, not a lot of cartilage to speak of and I’d had a Synvisc shot. I was understandably cautious, but knew I was continuing to lose muscle strength which wasn’t going to help me long term at all. I needed strength to support my joints, especially the damaged ones.

I loaded 10 kg weights on either side of the leg press and felt SO frail. I was in my school gym – most (not all) fellow fitness students were athletic and I felt like I didn’t deserve to be there. 20 kg was perhaps overly cautious. I upped the weight to a total of 60 kg quite quickly. From 60 kg to 100 kg took quite a bit longer. If I recall correctly, I got stuck around the 80/90 kg mark for quite some time. One of the issues was not actually physical by then – it was not knowing what was safe for me to aim for and no-one I asked was quite sure either. Will I ever get back to 200 kg? Right now, I doubt it – and you what? I’m OK with that. I know I have achieved what I set out to do – stay off pain medication. I’ll let the healthy people worry about 200 kg leg presses.

Climbing back up

Ultimately I asked my rheumatologist, who is very supportive of what I am doing, “How far is it safe for me to go? I don’t want to damage anything”. He is well aware I am using my own body as a research subject. He smiled and said “You’ll be fine. You’re sensible. Back off if it hurts.” After that I was more confident to push myself. I am careful. I don’t subscribe to the “no pain, no gain” philosophy – after all, pain is what I am working to manage, I don’t need to have more of it. Pace, incremental gains, no lifting to failure. My definition of “push myself” is not the general fitness industry definition – for very good reason.

I have just, this month, August 2017, managed to do a dumbbell bench press with 12.5 kg dumbbells (25 kg). I started back at 5 kg (10 kg total): it has taken me over 12 months to get to this far.

Other Considerations

Sometimes progress stalls. I find I lose gains very quickly if I miss a strength workout. Whether this is due to medications, the conditions themselves, my age (yes, I do have to consider that these days) or a combination of all three, I’m not sure. I’ve searched for research around such questions but have yet to find anything specific.

In late July 2016 I had a change of medication. I found this helped dramatically with the fatigue and therefore it has helped all the other aspects of my re-conditioning.

I don’t run. My knees are pain free and I want to keep them that way so I just don’t risk putting them through jogging or running. I walk a lot. I walk to my Pilates classes, I walk to or home from the gym, I walk to the next tram stop. While I’d love to get back to 10,000 steps a day, I’ll settle for 8,000 plus my other activities. I do indoor rowing, great whole body exercise.

In 2014 I could swim a 2.5 km session. In 2016 I was finally allowed by the physiotherapist to swim 250 metres. Now I’m back to 1.2 km sessions. Sometimes I only swim 800 – it depends on how I feel and how my shoulders feel. The message here is listen to your body at all times. Don’t use that as excuse to not do anything – but listen to your body. On Saturday I did my usual strength workout: I had every intention of increasing that leg press again, hopefully by 10 kg – I was aiming for 140 kg. As soon as I did my warm-up set I knew for whatever reason today was not the day. My strength was just not there. I suspect it was lack of dietary protein the day before – I’m currently monitoring how I feel against my dietary protein levels as mentioned on the Science Stuff page. So I simply did not try any increase. Next week will do, there is no rush, I’m not competing with anyone. I didn’t go backwards and that is my focus.

I’ve added Pilates to the mix at the suggestion of my physiotherapist. While this may look easy (looks like I’m doing absolutely nothing, doesn’t it?), trust me, after ten of these retracting the scapulae and opening the chest, I don’t want to do any more until the next day!

Objective Achieved!

As you can see, it isn’t achieved overnight. I’ve worked at it. Slowly, but surely, I’ve achieved my original goal: to stay off pain medications. Now on to the next goal, which is to help others in similar situations.

Will you give movement a try? Contact me for a preliminary chat. Limber Up to Live Life.

Disclaimer: This article is based in part on personal experience and is of a general nature, not tailored for any individual circumstances. Where appropriate, readers should seek medical clearance before embarking on an exercise program. 

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.