shapeofthings: (Diva)
Graves


This morning I went to see my endocrinologist for my 18 month check-up. Yes, it's been that long since I had my second hit of radiation: 6 months of awful followed by 12 months of feeling better than I have in years, slowly re-building my health and my life. The verdict: frankengland is stable, my immune system has stopped producing thyroid antibody and all is fantastically well.

There's still a chance of future wobbles since I still have 50% thyroid function. I may lose function over time and need to take more Thyroxin; my immune system may kick off and send me hyperthyric again, but both these outcomes are considered unlikely right now and I am a picture of endocrine health. Dr. B's conclusion: I don't need to see him again. We're done.

Grave's Disease Journey


It's been a long journey: 6 years now or there-abouts, but it's finally over (at least for a good while). I'm healthy, I'm happy and I have re-claimed my life. Thank you, those who've journeyed with me, sent me love when I was struggling to get through each and every day, held out a hand when I fell down. May those dark days now be nothing more than memories to look back on just to see how far I have come.

Here's to health, radiation, and replacing my thyroid with little white pills - a far more reliable option!

Daily
shapeofthings: (bloop!)
...to hypothyric town!

Tired. Epically tired, and permanently cold. Body feels like somebody doubled my density then replaced all my ligaments with old rubber bands. Back hurts. Feeling sooky and whiney.

I want to curl up in bed for a week, preferably with someone providing tea and cuddles on a regular basis.

*makes small, pathetic noises*

So, it looks like the radiation might actually be working. Hooray. Quickly too, by the feel of it. Only 2 weeks ago my thyroid levels were peaking, now they've plummeted.

Have made the executive decision to go off my meds - doesn't seem to be much point in suppressing thyroid function any more. Hopefully this will give me a short reprieve from the tired and acheys. It will at least remove one complicating factor from the equation: now what I am feeling should directly relate to what my body is doing. Will let the doctor tell me off for it tomorrow (he doesn't like it when I make his job redundant. I only go because I can't get the blood test results directly).

So here's to nuclear power, doing it's job and making me feel ick.

Go you little isotopes, go!
shapeofthings: (bloop!)
Last Friday went something like this:

Radiation1

For me? You shouldn't have!

You may notice that the vial says the dose was 450 MBq, rather than 600 MBq, but you should also note that the vial says i'll be 450 MBq on May 3rd, but on April 30 when I actually swallowed it (the day of manufacture), the dose would have been ~580 MBq. This is how they allow for radio-active decay of isotopes requiring transport. Fascinating stuff!

Radiation2

Aww, it's so pretty!



All right then, down the hatch!

Radiation3

Ahhh, I'm radioactive!


So far, so good. I'm a little hyper-thyric, but nowhere near as much as predicted. Now let's just hope it works!
shapeofthings: (bloop!)
Part 1 is HERE

It's been an interesting few months. I've been to talk to the doctors at the nuclear clinic, my potential surgeon and my endocrinologist about my options for further treatment. And in the mean time, my thyroid levels have finally come down into the normal range, and even slightly low, for the first time in almost a year. It's been lovely to have a few weeks of feeling like my old self and I have relished every minute of it. But it's over now; I'm on my way up again, but at least time it's intentional.


To your left is Dr. Hummer. Well, that's not really his name (it's Dr. Wilkinson), but it is his obsession. He drives a Hummer (yes, you guessed that much, I know). He gets articles in the newspaper about why he drives a Hummer (click here!). He has model Hummers in his office (it's true!). He even has Hummers on his official office stationary (evidence provided on request). He is also the man who will be cutting me open should I opt for thyroid removal in Tasmania. His main speciality/earner is gastric banding and he does his consultations in full scrubs. I'm told he's a very good surgeon. He's removed thousands of thyroids. But he's not removing mine, not yet.

We had a good chat though, Dr. Hummer, Alex and myself. I learnt that the parathyroid glands are four little pea-sized spots on the back of the thyroid. I learned that these little glands are very easy to damage as you pull them off the thyroid and try to preserve their neural connections and blood supply. I learned that you really don't want to mess with parathyroid function - that's your calcium, phosphorus and magnesium regulatory system - and I learnt that even if they're successfully preserved in surgery there will be some disruption to function that will likely require monitoring and treatment for the next three months. On the plus side, no more thyroid. On the minus side, three months of feeling crappy, and still a small chance of permanent damage to the parathyroids or the vocal nerves.


To your right is Dr. Keady. She's the nuclear doc. Alex and I had a long and detailed discussion with her about why the last lot of radio-iodine didn't really do much and what our options were. Dr. Keady listened and was thoughtful and took my perspective on board and came to the conclusion that the first dose had at least done something (my goiter is smaller and I had an initial reduction in T3 and T4 levels before spiking again then remaining high), so a much higher second dose should really do the trick. We're talking 600 MBq, the maximum outpatient dose (as opposed to the 250 MBq they gave me last time), and approximately three months to complete thyroid ablation. Provided, of course, that there are no surprises and complications, and even then we're talking perhaps 90 % confidence. And we'll have to do another technetium scan ($270), to make sure there are no more surprises. But there's no cutting, no hospital stay, no anaesthesia, no two weeks off work to heal, no risks to the parathyroids and no $4 000 hospital bill.

So, we have:

Guaranteed thyroid death + risks of surgery + risks of anaesthetic + risks to parathyroids + risks to vocal nerves + hospitalisation +time off work + whopping great bill + 3 months of feeling crappy
VS
90% likely thyroid death + a few hours in clinic + 0.01 % increase in risk of throat cancer + no time off work + affordable bill + 3 months of feeling crappy (technetium scan pending)


So yes, I chose the nuclear option again. It seemed so much more straightforward and if I'm going to feel crappy for three months either way, I'll take the non-bleedy option, thank you.

But of course it's never clear-cut or straightfoward, is it?

Surprises, complications & pretty pictures )

At 2 o'clock today I head back to the hospital to take my radio-active pill.

There's no turning back now, but neither is there any guarantee it's going to work. In three months' time I might be giving Dr. Hummer another call.


My thanks to the staff at Regional Imaging Tasmania - Calvary Hospital for letting us take photos of all the goings on.
shapeofthings: (bloop!)
Yesterday’s endocrinologist’s appointment was, shall we say, not good. The appointment itself was fine, with my counsellor coming along for support and to ensure all my questions got answered (the boy had classes). The answers, on the other hand, were depressing.

I’m mildly hyper-thyric again. Nearly eight months after radio-iodine treatment, some thyroid tissue has been destroyed, but any reduction in gland mass is being countered by an increase in anti-body production. My immune system is currently producing the most anti-body it ever has.

Nearly eight months after radio-iodine treatment, I’m on a higher dose of thyroid inhibiter than I was before they nuked me. I have had no net improvement.

At least that explains why I’m feeling so ridiculously tired and run down.

Clearly, further treatment is needed. So now it comes down to a decision between proceeding with the nuclear option, or getting all knifey on the damn gland. I’m arranging to talk to a surgeon next week to find out more about the bleedy option.

In the mean time, this is where things stand:

Option 1 - additional radio-iodine treatment
Note: may require 2 further doses (3 in total)
Pros:
• does not involve hospital stays, anaesthetics or being cut open
• non-invasive, an go straight back to life-as-usual
• largely covered by Medicare
• quick to organise – can happen a week after decision
• chance of being medication-free for several years before needing thyroxin
Cons:
• will take 6 to 18 months to fully resolve: will continue to feel like crap for this time, with associated problems with work
• thyroid levels will still fluctuate and be difficult to manage in the interim
• will require ongoing close monitoring and management
• cannot get pregnant until 12 months after final treatment (not that I’m trying)
• slight increase in risk of some cancers (minor)
• may not actually work at all (I may be radio-iodine resistant)

Option 2 – thyroidectomy
Pros:
• instant resolution of hyper-thyroidism
• no influence on pregnancy
• certain to work
• quick return to something approximating “normal” life
Cons:
• involves a hospital stay, anaesthesia and being cut open
• long waiting time if done through public system, expensive if done through private (I don’t have insurance)
• ~1 % chance of damage to the vocal nerves
• ~ 5 % risk of permanent damage to the parathyroid glands, leading to complicated, life-long problems
• ~ 30 % risk of temporary damage to the parathyroid glands

…and this is why I drink.
shapeofthings: (bloop!)
Officially Not A Good Day today.

Not only did I fail at sleep last night, I totally failed at today.

I did actually make it into work, where I proceeded to burst into tears in front of my colleagues.

Then a couple of hours later I managed to crash and burn whilst still at work. I had to be helped to the sick bay for a lie down as my body decided to shut down and hit me with a massive hit of adrenaline at the same time. There's nothing like being too weak to stand unassisted whilst trembling uncontrollably for an hour to really make your day.

Alex had to be called to take a taxi out to the office so he could drive me home. =o(

Evidently somebody's still a bit thyrotoxic.

***

Dear thyroid, I have had quite enough. Please be getting on with the death by radiation business.

Dear immune system, please learn to differentiate self and non-self correctly, and play well with others.

Feather-fluff
shapeofthings: (Hug?)
Working Week


Last week wasn’t a very good week.

In fact, it was an awful week, and there are yet more to come, as it take a long time to get off-the scale thyroid hormones under control again.

I’m a long way from control at present. A sudden sharp spike has hit seemingly related to this virus that still won’t go away. But what does that really mean?

http://farm4.static.flickr.com/3536/4017877773_3fbebd35dd_o.jpg


This is what Grave’s disease is. Auto-immune over-stimulation of the thyroid gland causing the excess release of thyroid hormones (T3 and T4). This causes a cascade of effects in the body including raised heart rate and blood pressure, raised adrenalin levels, racing metabolism and tremor. I can’t sleep, can’t think, am utterly exhausted and worst of all, have little control over my emotions. When you’re hyperthyric (thyrotoxic) you’re instantaneously thrown into a state of anxiety and depression.

It’s been 4 years now since I first got sick. I don’t talk about it much because I don’t like thinking of myself as sick, and because I don’t want it to be an excuse for apathy and lethargy. I don’t talk about it because people often don’t understand – I don’t look sick – and I’m worried people think I’m a hypochondriac, or that I’m being dramatic.

I take my little pink pills twice a day, and generally that’s it.



Three months ago I had radio-iodine treatment. I went to the nuclear medicine centre and was given a capsule full of radioactive material to swallow, and I thought that was that. Done, dusted, thyroid no more.

It worked so well. A few weeks afterwards I was feeling the best I’d felt in years. I had energy, stamina and focus, and I finally felt like I was getting my life back. The next blood test was perfect: T3 and T4 levels smack- bang within the normal range, and for the first time in years my body was producing Thyroid Stimulating Hormone. I was getting well!

I think that’s mostly why I missed the warning signs that I was getting sick again. I thought my thyroid couldn’t produce enough hormone to make me sick anymore, so when a little bit of depression crept in and I started having trouble sleeping I found other things to blame. After all, things weren’t going well at work and I was feeling pretty lonely.

Then everything escalated and I found myself having panic attacks in the middle of the night, feeling like a spring so tightly wound that the metal starts to crack.

Meds


So now I’m more heavily medicated. As well as the iodine uptake inhibitors (the pretty pink pills) I’m taking calcium blockers (the bright orange ones) to soothe the effects of too much adrenaline. Sleeping tablets mean I get at least a few hours of solid sleep a night, and now I’m feeling somewhat better; like I’m not about to crack. It’s just that I’m so very tired…

If I’d have noticed sooner, it wouldn’t have got so bad. Last week’s blood test shows levels in the red again, and not a trace of TSH. I don’t know why; no-one really understands what causes Grave’s disease or why the immune system suddenly ramps up its attacks. My specialist says to give it another 4 to 6 months for the radio-iodine to do all it’s going to, and then we see if I need another dose.

More blood tests, more medication, more missed work and more wondering if it’s ever going to end.

September 2017

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