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#1 Sept. 13, 2012 11:15:58

AmyG
Registered: 2012-06-28
Posts: 16
Profile  

RAI - my journey

Today is Day 1. I was given I-131 (dose of 12 mCi) in the Nuclear Medicine department at the hospital. Vitals & bloodwork are “normal” but Endo tells me I will go back hyper before it gets better. He gave me a prescription for beta blockers. I signed a bunch of forms and then given a small pill to swallow - the nurse told me that sometimes it could be a large horsepill but I lucked out with a small one. Sometimes I psych myself out when I have to take pills! I didn't sleep well last night thinking about today and how my life will once again have to be adjusted to work through the roller coaster of Grave's. I made a fortress of solitude in my room and bought lots of trashy magazines to pass the time away as I sequester myself away from the family and my precious dog We're all kind of hypochondriacs so psychologically, it's best to keep my distance.

I feel OK. My throat was scratchy beforehand so I can't attribute that to RAI. Overall, the treatment was simple - take a pill and leave the hospital. We'll see in the coming days how it goes.


Amy
Diagnosed June 27, 2012
Tried methimazole…allergic
Tried PTU…allergic
RAI treament September 13, 2012

“There is a crack in everything, that's how the light gets in.”

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#2 Sept. 13, 2012 12:52:52

adenure
Registered: 2012-03-22
Posts: 447
Profile  

RAI - my journey

Hi!

You did the 1st major step to getting better! Awesome! I know it's nerve wracking leading up to whatever treatment we choose, but once we do it, we're doing something to help us be well again. Keep us posted on how everything goes!


Alexis

Homeschooling mom to 4 wonderful boys!
Diagnosed with Graves Disease after my 4th baby- March 2012
Started on 5 mg. of methimazole daily for 7 weeks
Euthyroid at the end of those 7 weeks, but had to stop methimazole as liver enzymes were 8 times normal range.
Total Thyroidectomy- 6/15/12
Started Synthroid (brand name) 100 mcg. 2nd day after surgery for 6 weeks (TSH: 6.35 & free T4 in upper range and T3 just under mid- range).
Upped Synthroid to 112 mcg. 7/27/12
Euthyroid as of 8/10/12 on 112 mcg. Synthroid (TSH .79 and free T4 in upper range).

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#3 Sept. 13, 2012 16:30:22

AzGravesGuy
From: Peoria, AZ
Registered: 2012-08-07
Posts: 95
Profile  

RAI - my journey

Hi Amy!

Congratulations on taking a step toward getting your life back!

It sounds like you are pretty well prepared for what lies ahead. It may be scary at times but you will get through it. Everyone on this board is here for you.

The first few days may catch you off guard, but it gets so much better. Today is my day 9 and I feel 100%.

Please keep us posted.



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#4 Sept. 15, 2012 16:57:14

AmyG
Registered: 2012-06-28
Posts: 16
Profile  

RAI - my journey

Day 3 Update:
My parents came for moral support on day of. It was nice having them around to help make me some meals and do a little grocery shopping for me It's now Day 3 and my throat is really killing me - but we just went from high humidity to NO humidity so maybe the weather change is playing some part in my throat's dryness. I went shopping for a bit with my mom; she stood in line for me and I stood out of line. My back and legs are aching - gotta remember I'm not Wonder Woman (just yet!). I'll be taking it easy from here on out as I'll be flying across the country this coming Friday (poor timing but my trip was already booked before the allergic reactions hit and the sudden RAI treatment scheduled).

Side note: Thanks everyone for encouragement and words of support. It's extremely comforting to be able to come on this site, vent, and see that others have felt exactly like you have - people w/o Grave's just don't get it.


Amy
Diagnosed June 27, 2012
Tried methimazole…allergic
Tried PTU…allergic
RAI treament September 13, 2012

“There is a crack in everything, that's how the light gets in.”

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#5 Sept. 16, 2012 07:04:13

gatorgirly
Registered: 2010-02-23
Posts: 260
Profile  

RAI - my journey

My sore throat was worst on Day 3 after RAI, too. I do know that humidity levels can wreak havoc on my throat even now, 18 months after RAI, so I use a warm air humidifier in my old New England colonial when I sleep at night.

Make sure you have a letter from your doctor or the hospital because radiation detectors at airports are very sensitive.

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#6 Sept. 18, 2012 08:01:38

AmyG
Registered: 2012-06-28
Posts: 16
Profile  

RAI - my journey

Hey Gatorgirly - yes, I have a little card that shows what I had done and I'm giving myself plenty of time at the airport (I'm one of those people who likes to be there 2 hours before so I don't miss my flight - never missed a flight once!).

Today is now Day 6. Yesterday I had the worst body aches and a generalized anxious feeling. I took a Beta blocker and that seemed to help a bit. Other than being somewhat tired, eating nonstop, not working out and sounding hoarse, I feel eh.

One day at a time I suppose


Amy
Diagnosed June 27, 2012
Tried methimazole…allergic
Tried PTU…allergic
RAI treament September 13, 2012

“There is a crack in everything, that's how the light gets in.”

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#7 Sept. 18, 2012 13:36:49

gatorgirly
Registered: 2010-02-23
Posts: 260
Profile  

RAI - my journey

I know I had go to back on PTU for a few weeks after my RAI. Since you're allergic to both ATDs you've tried, did you endocrinologist tell you what would happen if you remain hyper for a while? The beta blockers can help the jitters and heart rate and whatnot, but the hunger is probably because you're slightly hyper.

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#8 Sept. 19, 2012 07:29:54

AmyG
Registered: 2012-06-28
Posts: 16
Profile  

RAI - my journey

He said I'd have to weather the storm (no pun intended). I totally didn't correlate hunger with being hyper but it makes sense - though I'm gaining weight not like before when I was losing it all. Hmph. What a roller coaster this is!


Amy
Diagnosed June 27, 2012
Tried methimazole…allergic
Tried PTU…allergic
RAI treament September 13, 2012

“There is a crack in everything, that's how the light gets in.”

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#9 Sept. 27, 2012 16:03:16

va814
Registered: 2012-09-27
Posts: 1
Profile  

RAI - my journey

Hello! New member here. My wife was diagnosed with Graves last year. Prescribed w/ metamazole and metoprolol. was fine for 6 mos, endo stopped the medications.But it came back. She had RAI last 8/31/12. Her anxiety worsen, fidgety, nervousness and stiffness. She's taking xanax before sleep. Her 2 weeks post RAI lab was done 9/14/12.

TSH 0.016 (0.450-4.500)
FT4 2.30 (0.82- 1.77)

FT4 is still quite high. We'll a follow up on 10/8. We've seen a Psychotherapist 2xs. I'm not sure if its helping her. Its easy to suggest activities for them to do to keep them busy and divert their worries, but we cant really grasp how their mental/mind works. I told her to empower herself with her condition, learn everything, it's your body. But she doesn't have the initiative. I'm constantly assuring her that everything will be alright. We just need to wait and watch. I've been calling off work just to be with her, specially in the morning when her anxiety is the worst.
This morning she said she feels space out, cant focus, worries about kids grades in school, what to cook for dinner,etc.
I know she needs my patience and support at this time. Sorry! for the rant! I know you guys/gal somehow have the same experience.

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#10 Sept. 28, 2012 10:01:45

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 2793
Profile  

RAI - my journey

va814 - Hello, welcome, and THANK YOU for being such a great advocate for your wife! Do you think your wife might be interested in joining us here? We actually have quite a few active members who have recently gone through RAI treatment, and could provide a great support system for her.

Wishing you and your family all the best!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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