[copper07]

in reply to: 8 weeks post RAI – back hyper and not sleeping! #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
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!

[copper07]

in reply to: OMG! Graves’ Rage and it’s fury! #1178380

oh yes, vanillasky
when i was in my first 6 months after diagnoses – i could lose it at the drop of a hat!
it was awful, i would get so angry over stupid things and then in my researching the disease, it talked about irritability and i thought ok, there is a reason, now lets learn how to control it!

[copper07]

in reply to: Diagnosed this week, finding only negative info #1178416

Hi kkavich,
my dr tried me on tapazole for 8 months before doing RAI. it took 5 months for my levels to change and then it was up and down. at one point, i was taking 60 mg of tapazole/day which i believe is the max for this drug or very close to it. i was also taking beta blockers for the terrible tremours and heart palpitations. Talk about needing patience.
i finally said to my Dr in December that i was sick (literally) and tired of this. i had a scan on Dec 28/12 and they scheduled my RAI for Jan 3/13

i am now 14 weeks post RAI and as you can see by my last blood tests, i’m just going hyper again. i have to say i’m enjoying the weight loss but, the other symptoms are not worth it and i know at some point that weight is going to pile back on when if or rather when i go hypo.

Now i did say to my dr in december that i wanted surgery but she said lets try this first. i have a gut feeling after all this, i’m going to need surgery anyway.

i’m quite sure you’ll be able to do your schooling so keep your dreams about that!

Diagnosed March 2012, TSH <.01 / T4 84
RAI January 3, 2013
as of March 19/13, TSH <.01 / T4 46 / T3 23
still waiting to feel “normal”

[copper07]

in reply to: Hair loss and muscle stiffness #1177506

Hi Shelly,
i’ve definitely had hair loss, same thing brush is full and even when i run my hands through i get a bunch of hair!
also have a lot of joint stiffness, if i sit too long at work, oh my goodness, you would think i was 90 years old!
i find my muscles go very weak though, at my worst, i couldn’t bend down to pick something off floor or i wouldn’t be able to stand up again or couldn’t even stand on a chair to reach something.

i had rai Jan 3, 2013 and still waiting for thyroid to die. hoping my hair will start to grow back when normal range, very thin on top in the front.a

best wishes on getting better.
cheri

[copper07]

in reply to: 8 weeks post RAI – back hyper and not sleeping! #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!!

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