Thursday, 17 March 2011

Graves Disease update

It's still hard for me to link "incurable disease" and "Kat". I realise there are so, so many people suffering worse things than me, but that really doesn't make me feel better!

I'm reminded of my disease every time:
  • I hop on the scales (don't ask);
  • I take my daily medication;
  • I feel depressed (and have to reconsider medication for that too);
  • My necklaces feel tighter;
  • I'm inexplicably exhausted;
  • I get the shakes;
  • My personal thermostat fails and I'm sweating in the air-conditioned office;
  • I have to go to the bathroom immediately after eating (TMI, but important, sorry);
  • The phlebotomist takes at least two goes to find a vein, on a monthly basis... etc.

    Initially, I was extremely unexcited by the idea of a radioactive iodine (RAI) treatment. Who would WANT to ingest something radioactive?? But after reviewing lots of scientific studies on Pubmed, I'm feeling a little more confident. I dunno though. Lifelong medication vs major surgery vs radiation. It's not exactly a buffet of palatable options.

    It doesn't cure the disease - it just destroys my thyroid. I would still need to have regular blood tests, except that it would be to determine the amount of thyroid hormone that I need (instead of the amount of anti-thyroid meds). Apparently this is more convenient and safe...

    Mind you, the only side effect of my current drugs is that occasionally my mouth tastes of metal. It's revolting, but far from deadly! The radioactivity has relatively short-term side effects (well, aside from thyroid destruction). Different countries disagree on how to give the RAI - generally, you are an outpatient, but when you come home you have to sleep separately, wash everything you touch immediately afterwards, and *ahem* avoid intimacy for a month - argh!!

    I don't know. There is no cure. There is no hope of a cure in the near future. I'm continuing on the drugs in a kind of holding pattern while I consider a more long-term solution. I think I'll ask the doctor what will make me less fat. Seems like the best way to decide :-D

    P.S. I'm open to questions about Grave's Disease, if there is something you'd like to know!

    5 comments:

    1. Jeebus. It sounds like the RAI would be easier if they just put you in hospital for a month! Although that would be an epic suckfest...

      Still, if it means less depression and weight gain and...other issues...maybe it's worth it?

      xxxx

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    2. Crazily, it's no guarantee of either! What it would do is make me permanently hypOthyroid - meaning no metabolism at all, except for by artificial means (meds). Soooo... I could/would still be fat!

      What RAI/surgery would do is mean that I would not be in danger of thyrotoxicosis, where my heart/brain/metabolism suddenly speed up and I die O.o

      A series of fabulous options, really. Regardless, I won't have the RAI before our trip to the States - it can set off radiation detectors!

      Meh, I'll survive. I just thought I'd write the post because you'd be surprised how many people have found my blog by Googling "Grave's Disease".

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    3. Well that's an epic kind of stupid... :S Although the lack of sudden death probably goes in the plus column!

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    4. The daily reminders aren't much chop, are they. Although, whilst my issues are statistically more life-threatening, at least I do have a Plan B (that's Zappy, by the way), and the only times I really get jack of it is when I'm doing something physical or I get emotional and it plays up. I hate to think what it'd be like to feel like you do **all the time**.

      I do like your thoughts on "tell them to do whatever makes me less fat", though :)

      There is a permanent option for me - the ablation (sp?? = burning) of one of the nerves in my heart - but they only do it for extreme cases. I was initially frustrated by this when I was going through hell, but now I'm just grateful that I don't go through hell all the time as some apparently do.

      If the RAI basically knocks your thyroid out, then wouldn't the medication make up for it, if taken in the correct dosage? It'd probably take a while to get the balance right, but once you had it sorted then surely it'd be okay? <-- hopeful and uneducated guess. And also, YAY to no sudden death!

      If you have to choose between permanent medication either way, then maybe go for whatever will make you feel more normal on a day-to-day basis?

      Good luck! xoxo

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    5. To your 'hopeful and uneducated guess' - correct, that is the theory. I hope it works like they say! I'll probably make a decision by the end of this year, but RAI looks likely.

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