Viewing 9 posts - 1 through 9 (of 9 total)
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  • copper07
    Participant
    March 1, 2013 at 7:32 pm
    Post count: 7
    #1059732

    Hi Everyone,
    my history:
    something terribly wrong one year ago, shaking, severe muscle weakness in legs, SOB, heart palpitations, always hot – went to dr and test results were TSH <0.01, T4 84, T3 32.7. Dx with Graves 2 weeks later. Put on Tapazole and it took til August for TSH to to get to normal state, didn't last long though. By December, i was tired of the up and down and my thryoid had grown at least 5x the normal size - difficulty swallowing. I had RAI on Jan 3, 2013 and last blood test showed i'm def hyper again but not as bad as last year. Endocrinologist told me it could take 18 weeks for thyroid cells to die off.
    Anyone have RAI – how long did it take for you? also suffering terrible insomnia – any ideas to help with that?
    thanks!

    AzGravesGuy
    Participant
    March 2, 2013 at 11:40 am
    Post count: 160
    #1177140

    Hi Copper!

    Yes, it can take a full 18 weeks, in some people longer to get the full effect of RAI. You are at week 8 and the tissue is probably still in the die back stage. This can give you hyper symptoms like insomnia.

    I used meditation and when needed Valium to handle the insomnia.

    Rest assured you are still in a transitional stage and what it is now will not be what it is in a few more weeks. If the insomnia gets worse contact your doctor and have some bloodwork done. You may need some Tapazole to ride out this phase of treatment.

    Whatever happens, I wish you the best of luck and hope you get the sleep you need.

    adenure
    Participant
    March 2, 2013 at 8:08 pm
    Post count: 491
    #1177141

    Just want to say hang in there. I had surgery instead of RAI, but I know how bad the insomnia is when we’re hyperthyroid. I had months and months of insomnia- 2-3 hours a night of sleep and waking up constantly. Not being able to get back to sleep. It sucks. No doubt. All I can say is that once your hormone levels get normalized, you will sleep again. For me, it was literally one night, all of a sudden I could sleep again. It’ll happen. I drank camomile tea (and still do) before bedtime to help with sleep. I tried Benadryl, but found that it made my heart rate go up, so that wasn’t too helpful. Each day you’re closer to being well again- hang in there.

    Kimberly
    Keymaster
    March 4, 2013 at 11:31 am
    Post count: 4294
    #1177142

    Hello and welcome! As AZGravesGuy noted, RAI can take up to 18 weeks to do its work. If the insomnia and other hyperthyroid symptoms continue to affect your quality of life, one option is to go back on the Tapazole until things start to level out again. If you aren’t feeling well, *don’t* be afraid to be the “squeaky wheel” with your doctor. Hopefully, though, you can get some relief soon!

    gatorgirly
    Participant
    March 4, 2013 at 2:21 pm
    Post count: 326
    #1177143

    It took my thyroid 22 weeks to die. I felt hypER the entire time, until maybe week 21. I felt OK, and then suddenly felt awful and sure enough, I was hypO. I am one of those people who feels better hypER, but fortunately I never had insomnia, so I can’t imagine being as uncomfortable as you sound. Hope you start to feel normal again soon!

    copper07
    Participant
    March 27, 2013 at 9:49 pm
    Post count: 7
    #1177144

    Thanks for the replies everyone. I did have about 2 weeks of sleeping ok, then back to insomnia :(
    just had another blood test and tsh <0.01 and t4 46, sigh, i thought it would at least start to go down? but i guess that won't happens till it dies completely?

    AzGravesGuy wrote:
    I used meditation and when needed Valium to handle the insomnia.

    My endo dr did give me option of going back on tapazole or beta blockers to help with heart palpitations and shakiness, i chose the beta blockers but thinking of going to family dr to try a sleeping pill.

    gatorgirly wrote:
    It took my thyroid 22 weeks to die

    oh i can’t imagine 22 weeks!!
    i went hypo in december and it was awful, way worse than hyper!

    thanks again for well wishes, its so nice to talk to people who understand!!

    Kimberly
    Keymaster
    March 28, 2013 at 11:16 am
    Post count: 4294
    #1177145

    Ugh, sorry that the insomnia is back after a couple of restful weeks!

    If the beta blocker alone doesn’t give you some relief, it is worth talking to your doc about the risks and benefits of going back on the Tapazole.

    Hope that you can get through this rough patch and enjoy a decent night’s sleep!

    copper07
    Participant
    May 5, 2014 at 4:58 pm
    Post count: 7
    #1177146

    well – its been a long time since i posted on here….over a year! to update since my last post, i did go back on tapazole. i am now 15 months post rai and no change. in fact my muscle weakness has increased and find it hard to blow dry my hair without having to stop and rest my arms several times. and the general fatigue is awful.
    i fought with my endo last summer to get referred to a surgeon – she wanted to send me for another rai – i said no way. 😡
    i saw a surgeon october 9, 2013 and i finally got called last week with a surgery date for a total thyroidectomy on May 16, 2014 :D
    i am very excited, i know i still have a rocky road of finding the right level for the new meds but at least i have hope that i’ll start to feel normal again.
    for those interested in the surgery route – i’ll keep you posted!

    Kimberly
    Keymaster
    May 6, 2014 at 3:09 pm
    Post count: 4294
    #1177147

    Thanks for the update! We have quite a few regular posters here who have chosen thyroidectomy, and they are great about sharing their experiences.

    You can also use the “Search posts” feature for “thyroidectomy”, “thyroid surgery”, etc. to read their stories. (You have to be logged in to use the search feature).

    Take care!

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