# Friday 10am is my RAI Appt- I gained 5lbs in a week!



## bosox10 (Jun 9, 2011)

So I have struggled with my weight for the last 17 years since the birth of my youngest child and I was just recently in May, diagnosed with Graves after an ER stay with tremors so bad I couldn't hold a glass of water without it sloshing out of the cup. I can easily stand to lose 40-50lbs.

My doctor said I'm so Hyper I should have lost 50 lbs easily. WHAT??! all was normal till last week when my hunger got out of control and no matter what I ate, I could not get a feeling of fullness. I was at the Endo last Tues then had a follow up yesterday to set the RAI appt and I GAINED 5LBS FROM LAST WEEKS VISIT!! I don't even know what to say. I'm terrified that I'm gonna get this RAI on Friday and things are just going to go downhill from there weight wise.

So to all the RAI survivors out there that weren't thin to begin with (and how common is that? Like should I play the lottery? ), how long before things "normal out?)

The Endo said there was a 50% chance of becoming Hypo within 10 years- that's not what I'm reading though. 12 Millicures is the dose he ordered and these are the labs from last week as opposed to the ones in my signature that were run at the end of May. I had a horrible reaction to the Tapazole so I've been off that since July 4th but I AM on a Beta-Blocker.

Thank you all! Freaking out just a bit here.


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## bosox10 (Jun 9, 2011)

Oops... Forgot the labs...

TSH, 3rd Generation <0.01 L range 0.40-4.50
T4, Free 1.1 range 0.8-1.8
T3, total 114 (this number is way diff from my orig #??)
TSI 173 range <140 baseline
White Blood Cell count 14.9 range 3.8 - 10.8
Red Blood Cell count 5.16 range 3.80 - 5.10
MCV 77.3 range 80.00-100.00
MCH 25.2 range 27.0 - 33.0
Platelet count 491 range 140-400
Absolute Neutrophils 10,639 range 1500-7800


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## melissa_24141 (Jun 29, 2011)

I went to the doctor thinking I was hypo. Turned out that I was actually hyper (0.015) Graves. I was also gaining weight. That was 3 years ago that I had the radiation. Now severe hypo (TSH 40) my weight has stabled out. I didn't gain much more after that. I was hypo within months. So, head up and think positive. And yeah, may want to go get that lotto ticket  lol


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## desrtbloom (May 23, 2010)

When I was very hyper I gained 20 pds in two weeks and then another ten pounds over the next three months. I thought I was the only one not losing weight when they were hyper. I'm hypo now, but I still have that feeling of not feeling full. I am always hungry. Since my thryoidectomy and multiple Synthroid changes, I gained another 30 pds. I am hoping I am on my way to stabilizing and then I am PRAYING that I can drop this weight. Believe me, I know how frustrating and depressing it all can be.

:hugs:


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## webster2 (May 19, 2011)

Twenty years ago, I was diagnosed as being hyper. I had been losing weight like crazy, 8 pounds in one week, without trying. I've been diagnosed as hyper again, and I am gaining weight. I have even said goodbye to my li'l buddies, the M&M's & friends to no avail...oh well..


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## Andros (Aug 26, 2009)

bosox10 said:


> So I have struggled with my weight for the last 17 years since the birth of my youngest child and I was just recently in May, diagnosed with Graves after an ER stay with tremors so bad I couldn't hold a glass of water without it sloshing out of the cup. I can easily stand to lose 40-50lbs.
> 
> My doctor said I'm so Hyper I should have lost 50 lbs easily. WHAT??! all was normal till last week when my hunger got out of control and no matter what I ate, I could not get a feeling of fullness. I was at the Endo last Tues then had a follow up yesterday to set the RAI appt and I GAINED 5LBS FROM LAST WEEKS VISIT!! I don't even know what to say. I'm terrified that I'm gonna get this RAI on Friday and things are just going to go downhill from there weight wise.
> 
> ...


I am not sure what your doctor has in mind. Are they not going to completely zap out your thyroid?

Also, I and many others were extremely hyper and gained tons of weight. Nothing is carved in stone. I lost all the weight in the aftermath.


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## bosox10 (Jun 9, 2011)

Thanks everyone for the replies. He did say everyone reacts differently so I guess we'll just have to wait and see.

And yes Andros, he said that their intention is not to "kill" it, but to calm it down or deaden it a bit to make it stop producing so much of the hormone..

I thought I was nuts thinking my tremors were starting back up yesterday but alas, the are back  They started slowly but now my upper arms on the inside feel like I've got the chills and holding out my hands in front of me, which I did at the Endo yesterday with NO movement, is a hot mess! This is nuts! I went on the Tapazole on 6/8, stopped the tremors about a week later completely, and have been off the meds since 7/4..so in 9 days they've come back???

And my current BP/Pulse is 133/87 91 pulse- ON beta-blocker- What in the world!

After the RAI, do they stop? Will the Synthroid when I go on that stop them? Ugg!


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## Andros (Aug 26, 2009)

bosox10 said:


> Thanks everyone for the replies. He did say everyone reacts differently so I guess we'll just have to wait and see.
> 
> And yes Andros, he said that their intention is not to "kill" it, but to calm it down or deaden it a bit to make it stop producing so much of the hormone..
> 
> ...


I am not sure that is such a good idea. You will eventually go hyper again as the thyroid tissue does replicate. Also, it will be hard to titrate any thyroxine replacement because the remaining thyroid may not be stable.

Now, look..........................the above is humble opinion. I am not into negativity as you well know. Just thought I would toss this out there.

Especially if you are in the throes of advanced hyper...............you could still remain hyper at the outset.

Let me know what you think.


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## bosox10 (Jun 9, 2011)

I'm in the throes of a nervous breakdown right now!!!! I have a slight fever of 99.6.

I called the Endo and they said to go thru with the treatment tomorrow and if I feel "bad" over the weekend to call them back and they might put me on Prednisone?? What would that do? I was only prescribed that because I blew up like a blowfish on the Tapezole and broke out in hives...Ok really, I'm starting to lose my mind with these doctors..

Are there stats out there of people that did the RAI and then ultimately had to have surgery? Deep breathes, Deep breathes...ommmmm, HR now 103...grrrr


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## miltomeal (May 17, 2011)

I would like to chime in about this.

And yes Andros, he said that their intention is not to "kill" it, but to calm it down or deaden it a bit to make it stop producing so much of the hormone..

This is what the radiologist told right before my RAI. That was May 6th. today i am more hyper than i was before the treatment, on meth and still not sure what the future holds regarding my graves, another RAI or surgery? I agree with Andros that this may not be such a good idea.

Best of luck with the treatment! this shall pass


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## Andros (Aug 26, 2009)

bosox10 said:


> I'm in the throes of a nervous breakdown right now!!!! I have a slight fever of 99.6.
> 
> I called the Endo and they said to go thru with the treatment tomorrow and if I feel "bad" over the weekend to call them back and they might put me on Prednisone?? What would that do? I was only prescribed that because I blew up like a blowfish on the Tapezole and broke out in hives...Ok really, I'm starting to lose my mind with these doctors..
> 
> Are there stats out there of people that did the RAI and then ultimately had to have surgery? Deep breathes, Deep breathes...ommmmm, HR now 103...grrrr


You are not on any anti-thyroid med right now, are you? Are you on a betablocker?

Prednisone would calm things down.

You are in my thoughts and prayers for tomorrow. You are in advanced stages so I "am" worried about you.


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## bosox10 (Jun 9, 2011)

That's what I'm afraid of Miltomeal- can I cannot take that Tapazol for nothing so I'm afraid this will all be for naught and I'll end up with the surgery anyway.

Correct Andros, I am not on any med's except for Propranolol ER 120 MG which is generic for Inderal LA. It's an extended release pill so I didn't have to take 3 pills a day.

I went to go pick up my films to bring with me tomorrow, got in the car, Matchbox 20's song "Unwell" was on and I got in just in time for the line, "I'm not crazy, I'm just a little unwell.." and I BALLED my eyes out all the way to the hospital to get the films! I have lost my mind! I don't know what "snapped" in me today. It's like the tremors came back, the BP went nuts and now this low grade fever is just making me weepy.

I may just drive to the ER in Tampa this time, where the real doc's are, as opposed to the rural area ER that I live in, late tonight and see if they can figure out the fever issue. Every part of my gut is saying NOT to do the RAI if my immune system is already compromised and I know from my labs and my WBC count from last week, I'm all out of whack


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## miltomeal (May 17, 2011)

What i learned from this board and my doctor is that i might not find a surgeon that will remove my thyroid because i had the RAI treatment. RAI changes the consistency of your thyroid and makes it more difficult to remove, or something like that (my memory is pretty bad these days)LOL

You are going thru so much right now. 
Please remember that the next step in this process is YOUR decision.

I hope for nothing less than the best for you...you are in my thoughts and prayers


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## bosox10 (Jun 9, 2011)

I did it! What a ridiculous morning to get to that pill LOL.

I was rushing out of the house since I was driving myself and it's about a 45 min ride, and I ran to take my betablocker and a prevacid, when I realized as I threw them both in my mouth that one JUST DIDN'T LOOK RIGHT! I panicked running back to the bottle and realized I had just swallowed my Ambien- OMG. Complete panic set in. Normally it could take up to 3-4 hours for that pill to do it's job but I had just taken one at Midnight and didn't go to sleep till 3am and up at 7am so I was beat. I quickly made a pb&j sandwhich hoping that would block the effects and off I zoomed. I DO NOT ADVOCATE DRIVING ON THAT CRAP. But my the grace of God, I mad it into Tampa and back and only rubbed up along one curb along the way. Hubby says sounds no diff then my regular driving 

So for the pill...very easy, very nice lady in the Nuclear Med department, very quick and efficient...got to shoot it down like a shot and off I went- I was on a mission to get home as fast as I could!

I feel nothing as far as symptoms in my throat, no horseness, no soreness, burning, bad taste anything. I took a 3 1/2 hr nap and I'm still a bit groggy and my tremors are a lot better then yesterday (I forgot to mention I had some Ice Coffee yesterday and a cortisone shot in my toe so not sure if that set things off for me yesterday)

Soooo. So far so good. I REALLY wish I hadn't have taken that stupid pill this morning cause then I would know for sure if I'm feeling "weird" in anyway but I guess I got to make things interesting for myself!!

I'll give further updates as things progress. Thanks so much for the words of encouragement and advise!


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## Andros (Aug 26, 2009)

bosox10 said:


> I did it! What a ridiculous morning to get to that pill LOL.
> 
> I was rushing out of the house since I was driving myself and it's about a 45 min ride, and I ran to take my betablocker and a prevacid, when I realized as I threw them both in my mouth that one JUST DIDN'T LOOK RIGHT! I panicked running back to the bottle and realized I had just swallowed my Ambien- OMG. Complete panic set in. Normally it could take up to 3-4 hours for that pill to do it's job but I had just taken one at Midnight and didn't go to sleep till 3am and up at 7am so I was beat. I quickly made a pb&j sandwhich hoping that would block the effects and off I zoomed. I DO NOT ADVOCATE DRIVING ON THAT CRAP. But my the grace of God, I mad it into Tampa and back and only rubbed up along one curb along the way. Hubby says sounds no diff then my regular driving
> 
> ...


Hope you are feeling just as good today!!! I had to laugh but only in hindsight. I know all this was not too funny if at all yesterday.

God bless! Glad you have done the deed!


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## AZgirl (Nov 11, 2010)

How are you doing Bosox10 after RAI,, hope your doing good


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## bosox10 (Jun 9, 2011)

Hi all, so it's been a little over a week and I gotta say I didn't have any real throat issues or anything other than being tired for all of this past week. I still cannot walk around for extended amounts of time, like grocery shopping, without feeling cold and clammy, but my BP is fine. I'm still on Beta-blockers. yesterday and today though I noticed my nausea feeling is back- all day long  Not happy about this. And I have had this weird almost "tunnel" like feeling almost like when things get black and your gonna pass out, in my head. Not quite lightheadedness but it just makes me want to close my eyes and lay down. Not that I'm sleeping still of course! 
So I'm just taking it slow. I have a follow up appt in a couple weeks with bloodwork so hopefully we'll see where I'm at.


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## AZgirl (Nov 11, 2010)

From what i understand, after RAI, your hormones are going crazy for a while... till things settle down. I sure hope everything gets easier for you soon. Nothing is simple with this crazy disease!


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