# My untriumphant return



## JPGreco (Mar 2, 2012)

Hey folks,

Its been a looooooong time since I popped in to the boards, my apologies. Between working and coaching all fall and then holiday craziness I got sidetracked.

Anyways, my RAI didn't take. I had it in June '12, and my symptoms starting returning late November.

I'm going in for another round soon, but i have obligations that are forcing me to push it back due to the precautions. I have to share a hotel room with some people and I don't want to have the procedure done prior to that. Doc won't like it... hehe

Hopefully I'll be around more to help anyone in anyway I can.

~James


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## Octavia (Aug 1, 2011)

Oh, that's too bad. When do you think you'll be able to have Round 2? Will they use a higher dose?


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## Andros (Aug 26, 2009)

JPGreco said:


> Hey folks,
> 
> Its been a looooooong time since I popped in to the boards, my apologies. Between working and coaching all fall and then holiday craziness I got sidetracked.
> 
> ...


Good to hear from you and I personally am not at all surprised. I had to have RAI 3 times. It is not at all uncommon in advanced cases.

Let us know when you are scheduled. Are you back on anti-thyroid med?


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## miltomeal (May 17, 2011)

JP~
Sorry to hear that you are in need of another dose. I remember your case pretty well. What do you mean that the symptoms have come back? have your test results gone back to hyper without meds?

I'm still trying to feel if i am there as well...

thanks 
milto


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## JPGreco (Mar 2, 2012)

First off, its good to hear from all of you again. I'll be catching up on threads hopefully.

Milto, what happened was I never technically went euthyroid or hypo. I actually stayed hyper as far as I can tell. Because I was SOOOO hyper, my blood tests were spaced out until I came down far enough that I would start doing tests closer and closer together.

So What happened was I had a test in september or october, and I was still a really hyper, but all my symptoms had subsided (ie, no tremors, putting on weight, etc.). The only symptom that I can't be sure that it subsided or not was my heart rate. It was still higher than I thought it should be, but I felt a lot better for about 3 months (Aug, Sept, and Oct.).

Because I've been hyper for SOOOOO long too, I'm very very tuned into the symptoms. So I recognize them as soon as they started creeping back.

As for when I'm supposed to have the second round of RAI, well, my doc probably is gonna be mad that I didn't do it yet. My last apt. was december 18th. Well I have so much going on, that I can't really have the RAI done due to the precautions and such. Like Jan. 25th, I'm sharing a hotel room with some people and I'm gonna be sitting within 2' of people for hours on end (have a conference to attend). So I can't do the RAI and feel comfortable attending. So I'm pushing it off till afterwards. Probably early February since I'll need a little time to go on the LID. My last dose was 14.9 mci, and I'm expecting around 20 this time.

My doc is really pushing for surgery though because she does not like doing RAI more than once, so we'll see where that goes.

Andros, I'm allergic to anti thyroid meds, so the only one i'm on is a beta blocker. My doc Rxed something else, which she said is better for the tremors, but the beta blocker works for me, it works fast, and I can freely adjust the amount I take if I feel like my heart is racing. My tremors aren't too bad and are worse when I don't eat for a while, so I'm not even bothering filling that Rx. I've been on the beta blocker for almost a year now, and it works. I stick with what works.

I wasn't expecting the RAI to work first time either, so a second and third dose was in my plan. I just didn't realize my doc was so anti multiple RAI doses.

So yeah, that my story in a nutshell for the last few months and upcoming RAI. Nothing I'm worried about since its all old hat right now. Symptoms aren't that bad. And of course, I still play soccer 4 times a week, so that don't exercise thing, yeah, never really followed that one... lol

Good news though is the RAI seems to act relatively fast for me. My levels dropped several hundred units in 2 months (I think my FT4). So I'm hoping for another quick affect. We'll see.


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## Andros (Aug 26, 2009)

JPGreco said:


> First off, its good to hear from all of you again. I'll be catching up on threads hopefully.
> 
> Milto, what happened was I never technically went euthyroid or hypo. I actually stayed hyper as far as I can tell. Because I was SOOOO hyper, my blood tests were spaced out until I came down far enough that I would start doing tests closer and closer together.
> 
> ...


When are you scheduled for the RAI? Yes; I am a huge proponent of sticking with what works! Good for you!

Don't despair; if I made it, you will also. You sound strong of mind and body. That's what it takes!!


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## jenny v (May 6, 2012)

JPGreco, I'm just nosy, but is there a reason you aren't considering surgery instead of another round of RAI?


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## JPGreco (Mar 2, 2012)

Jenny, the answer is simple; $, $, and $.

I don't have any insurance. RAI is less than 200 bucks. Surgery is a couple of grand at least. Right now its just not in the cards. Though it only being a second dose, I'm willing to give it a go again.

In order to qualify for medicaid, I have to stretch the truth a bit. I actually been meaning to go talk to a rep, but life gets in the way of that often.


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## jenny v (May 6, 2012)

That stinks! I hope this second round of RAI works out for you and you can get on with things. I've been without insurance before and I wouldn't wish it on anyone, it's a frustrating and scary place.


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## JPGreco (Mar 2, 2012)

Ok, so a bit of an update;

Gotta go in for an uptake scan again, which is this thurs/friday. After that, we'll schedule the therapy dose.

Also, my doc is switching me from 100mg of atenolol a day to 60mg of proponolol. Anyone have any experience with that? I mean, the atenolol i took 2x a day. The proponolol the doc wants me taking every 8hrs. I assume that means 3 times a day (morning, noon, night).

The atenolol was working fine for me, so I'm not sure why the switch, but i'm gonna humor her for now.


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## Andros (Aug 26, 2009)

JPGreco said:


> Ok, so a bit of an update;
> 
> Gotta go in for an uptake scan again, which is this thurs/friday. After that, we'll schedule the therapy dose.
> 
> ...


Yes, that would mean3 times in a 24 hour period. And look what I found!!

http://www.medicine.nevada.edu/wps/Proceedings/46/127-Vol46P127.pdf

Hey....................good luck on the uptake scan.


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## webster2 (May 19, 2011)

I've taken both atenolol and proponolol. They both worked well. One I took atenolol once a day and the other 3 x day. My heart was much calmer taking it 3 x day. Good Luck to you!


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## JPGreco (Mar 2, 2012)

Great, thanks webster. My opinion was if its not broke, why fix it? The atenolol was working, at least to some degree. I guess I won't make any noise right now about the switch over to another medication. Seems to be just about the same price too, so that's good.

Also, at some point I'll go through and post all my labwork for the last year for everyone. The nuclear tech seemed surprised that I was coming in for a second round though.

EDIT:
Just picked up the propranolol and took my first pill, yay... lol


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## JPGreco (Mar 2, 2012)

so far the propanolol doesn't seem as effective as the atenolol.

Also went in for another uptake scan to prep for another round or RAI. The place i went said since its been 8 month, i need another scan, so whatever.


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## JPGreco (Mar 2, 2012)

Going in for consult tomorrow for RAI 131. Not that I need it, but its required. The recent uptake was 40%, but I think I screwed it up. However, they're giving me 20mci this time instead of 15, which I was hoping to have a slightly stronger nuking this time, so it works out. Gonna really try to maximize the LID, even avoid things that are listed as "Limited". Hard as hell to avoid sodium though it seems (due to not knowing if its iodized or not).

I hope that saturday is acceptable, late in the day (last app.). That or tuesday would be best cause I would play soccer approx 12hrs after taking the RAI and sweat out some of the excess.

As I said, I'll catalog everything into a new thread for the benefit of the forum.


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## HotGrandma (Sep 21, 2012)

James, not sure how old you are? Just finished reading Dr. Rubin's book "thyroid for dummies". Not to alarm you, but he suggests banking sperm for men having RAI if they still want children. Just a thought. Hope everything comes into balance with you treatment this round.


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## Andros (Aug 26, 2009)

JPGreco said:


> Going in for consult tomorrow for RAI 131. Not that I need it, but its required. The recent uptake was 40%, but I think I screwed it up. However, they're giving me 20mci this time instead of 15, which I was hoping to have a slightly stronger nuking this time, so it works out. Gonna really try to maximize the LID, even avoid things that are listed as "Limited". Hard as hell to avoid sodium though it seems (due to not knowing if its iodized or not).
> 
> I hope that saturday is acceptable, late in the day (last app.). That or tuesday would be best cause I would play soccer approx 12hrs after taking the RAI and sweat out some of the excess.
> 
> As I said, I'll catalog everything into a new thread for the benefit of the forum.


Good luck on the second round!!! Will be waiting to hear!


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## JPGreco (Mar 2, 2012)

HotGrandma, I'm almost 32, but what I read is that low dose RAI has no long lasting affects. It may temporarily affect things down there, but supposedly returns to normal. So hopefully that is true since children aren't in my immediate future and won't be in my long term future until I find someone to be my kids mom... lol


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## Octavia (Aug 1, 2011)

JPGreco said:


> ... and won't be in my long term future until I find someone to be my kids mom... lol


Minor technicality. 

Makes sense, since sperm cells are produced on an ongoing basis, as opposed to our eggs, which we are born with (if I remember sex ed correctly).


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## JPGreco (Mar 2, 2012)

Octavia said:


> *Minor technicality. *


Maybe it's my dance moves....
arty0049:

This time around, as I said though I'm really focusing on the LID and LSD. I didn't ask what amount of sodium I should be limiting too, but I know that since I can't tell if its iodized, to cut as much as possible out. So far today, I've had maybe 500mg of sodium.

Gotta go buy some shredded wheat and oatmeal. That and some popcorn for snacking on.


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## JPGreco (Mar 2, 2012)

And I am officially glow

On the low Iodine/sodium diet for another 24 hrs or so, but I have kosher salt, so its not really low sodium and I can salt my popcorn without worry.

Drinking plenty of fluids would be easier if I could drink beer right now....:sad0047:


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