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Thread: Graves' disease update

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  1. #1

    Join Date
    Sep 28, 2011
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    London, UK
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    Default Graves' disease update

    Diagnosed with Graves' 2 years ago, although I suspect I'd had it for at least 12 years. Did 18 months on carbimazole. Came off it in November and Graves' came right back after a couple of months, with a vengeance. Had radioactive iodine I-131 ablation yesterday in the hope that it will either make my thyroid normal or slightly underactive, in which case I'll go on replacement thyroxine. Had a moderately generous dose of the I-131, so it may kill off my thyroid completely - I'd rather be underactive than overactive because apparently it's easier to manage, and the flare-ups really knock me for six. Currently on steroids to manage the thyroid eye disease flare-up while my dying thyroid pumps out all its stored excess hormone, so expecting it to get worse before it gets better - could take 3-6 months before it's all done. Back on carbimazole next week. Fortnightly bloodtests to come to monitor the demise of my thyroid
    231/221/140
    Exercise in the morning before your brain figures out what you're doing!

  2. #2

    Join Date
    May 09, 2009
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    Default Re: Graves' disease update

    Wow, you have a lot on your mind with all this. Thanks for taking the time to update us. I hope things improve quickly for you. Take care of yourself and let us know how you are doing with everything.

    5'6", 45/F, Mom of 3 boys Army wife Highest weight:198lbs/Lowest:125lbs/Current:144lbs

  3. #3

    Join Date
    Sep 28, 2011
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    Default Re: Graves' disease update

    Hanging in there - my eyes haven't been affected, thankfully. The past 2 weeks have not been pleasant, but I suspect most of that was the side-effects of the steroids; I'm weaning myself off them now and should be done in a week. I get the results of my first post-treatment bloodtest tomorrow to see what's happening.
    231/221/140
    Exercise in the morning before your brain figures out what you're doing!

  4. #4

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    Default Re: Graves' disease update

    Hope you see improvement as you wean off the steriods. How did the blood tests turn out? I have learned to get my own copies of blood tests, ultrasounds, etc. Its not enough just to hear the dr say "it's ok". Take care.

    5'6", 45/F, Mom of 3 boys Army wife Highest weight:198lbs/Lowest:125lbs/Current:144lbs

  5. #5

    Join Date
    Sep 28, 2011
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    Default Re: Graves' disease update

    My thyroid levels have started to return to normal; FT3 and FT4 have started to come down, and TSH has shown a tiny increase (0.003 instead of <0.001). Turns out the steroids were too high a dose for too long (prescribed by another consultant), so I'm stopping them as of today on the usual consultant's instruction; I'd done most of the weaning-off by now anyway so I don't think I'll get withdrawal symptoms. Coming off the anti-thyroid meds completely at the end of June so we get a clear picture of what my thyroid's really doing. Bloodtests monthly until I hopefully go underactive, then onto thyroxine for life, but I should get free prescriptions for that. Feeling pretty good The Graves' flare-up caused by the radio-iodine is calming right down.
    231/221/140
    Exercise in the morning before your brain figures out what you're doing!

  6. #6

    Join Date
    Apr 06, 2008
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    Default Re: Graves' disease update

    Sending positive thoughts your way, Kil
    Jill
    I DID HAVE 100 pounds gone and WAS setting up residence in One-derland.
    I was No longer OBESE. Just Overweight. I want to be back there again and am on my way.

    Don't trade what you want MOST for what you want right now.






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  7. #7

    Default Re: Graves' disease update

    I was diagnosed with it 20 years ago. Did radio active iodine uptake and am now hypothyroid. Doing ok except for dry mouth, dry skin, etc.....

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