# RIA Nov 9th



## nodakmom

Tomorrow I have my surgical checkup and pre-RIA TSH tests etc. I've got a list of questions ready, from the path results (cancer type etc. that I don't know the details of) to RIA prep and post procedures. I've done lots of research, read thru the posts here, and feel well informed except for the specific details of my own RIA proceedings lol.

But I gotta say... I FEEL CRUMMY!! :sick0002: lol I read how some said being hypo right before RIA sucks and now I believe them. I felt good, then ok, then tired, and the last two days crummy. It really is flu-like: achy, headache, nauseous, tired, brain fogged. Am I going to feel this bad for the next two weeks until the Synthroid starts working?


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## Octavia

You'll probably go up and down a bit, but overall, yes, you will likely feel crummy until your levels rise back up closer to where they should be.

Hang in there. Best wishes for no RAI side effects.


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## joplin1975

Ditto Octavia's post. Sorry!

But I was able to start Synthroid five days after my therapy dose. I started to feel better about 72 hours after I started my Synthroid.

Good luck!!


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## CLRRN

Hang in there....and I hope your "glow period" is uneventful. Unfortunately you may have ups/downs until your thyroid meds kick in. I didn't start meds until after WBS.

Good luck!!!!


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## nodakmom

Thanks all! The RIA is a go. My TSH level today was 36. She was surprised it was that low based on time and how crummy I feel. I am feeling better today thankfully, as long as I stay on top of the Tylenol so the headache doesn't get so bad.

Oh, and I got the details on my cancer. It was well-differentiated, encapsulated, follicular-variant papillary thyroid carcinoma. Tumor size was 3.8cm, but neither path report gave a stage so I'm guessing stage 2 based on that tumor size. They will be starting me on 112mcg of Synthroid once I can start it.


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## Octavia

Progress...information...plans! You are headed in the right direction!


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## nodakmom

I am back to feeling like 2 weeks ago. I think last week I felt soooo awful because even though I didn't get the stomach flu in all it's glory like the rest of the family, I did have a touch of it. The headache, nausea, etc is gone. Thankfully!! Now I'm just back to dingy and slow lol.

I confirmed today that I will be sent home for sure after taking my little glow . My family will be able to be gone thru Saturday but my boy has a birthday party to attend that afternoon and really its a bit too soon for them to return to the house so I'm trying to see if they can spend Saturday night at my sister in laws.


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## Andros

nodakmom said:


> I am back to feeling like 2 weeks ago. I think last week I felt soooo awful because even though I didn't get the stomach flu in all it's glory like the rest of the family, I did have a touch of it. The headache, nausea, etc is gone. Thankfully!! Now I'm just back to dingy and slow lol.
> 
> I confirmed today that I will be sent home for sure after taking my little glow . My family will be able to be gone thru Saturday but my boy has a birthday party to attend that afternoon and really its a bit too soon for them to return to the house so I'm trying to see if they can spend Saturday night at my sister in laws.


Thursday; right? You are in my thoughts and prayers. I hope this is the last of it except for timely check-ups!

Time to get on with your life! Yes?


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## nodakmom

Andros, on Wed, 3 pm to be exact arty0048: lol . I also found out my glow dosage will be 55.0 mci.


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## CLRRN

nodakmom said:


> Andros, on Wed, 3 pm to be exact arty0048: lol . I also found out my glow dosage will be 55.0 mci.


I wonder if there is some logic behind the 3pm time??? My RAI was scheduled for 3pm too. LOL


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## nodakmom

CLRRN said:


> I wonder if there is some logic behind the 3pm time??? My RAI was scheduled for 3pm too. LOL


That's funny! I will be glad to be done with the LID, one week of that is enough! On the upside I've lost 5 pounds already


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## nodakmom

Well, I'm home, underwhelmed. And confused and annoyed. I was in and out of there in about 30 min. He explained the radioactivity, gave me a tri-fold pamphlet, gave me the pill, measured my radioactivity, and sent me on my way. I asked if there was a follow up scan or anything, and he said there were no orders except this.

I've not heard a peep back about my appt with the endo in the future. I have no idea what to think and just feel like I'm lost in a crack. I thought there was a follow up WBS? I've found 1 document that talked about skipping the WBS and just relying on Tg levels, but everything else supports a scan 5-7 days after I-131.

I put a call in to my surgeon's office, since they are the only ones I know to deal with right now. Of course, no call back today, and I'm doubting tomorrow either even, knowing Thursdays are surgery day for them. I'm just frustrated at this point.


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## Octavia

For me, there was a follow-up whole body scan. I think my RAI was on a Friday (may have been Thursday), and my scan was Tuesday.


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## joplin1975

Octavia said:


> For me, there was a follow-up whole body scan. I think my RAI was on a Friday (may have been Thursday), and my scan was Tuesday.


Yes, same here. Therapy dose on Friday, scan on Monday. They said they needed to know it was working & that they saw a reduction in cells.


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## nodakmom

Wow, I'm almost flabbergasted, and annoyed. My surgeon's nurse called back. She found that the endo has a tentative appt for me Jan 4, 2012. She said every thyroid patient they've referred over has been treated this way-- the endo's office does not call the patient until closer to the appt date, and just leaves them in the dark, confused. She understood why I called and was very sympathetic, and encouraged me to call the endo to get answers.

So I call and sit in the phone queue for a few min when it gives me the option to continue holding or leave a vm. I chose to leave a vm. We'll see if I get a call back or if I'll have to call again. It sure does not comfort me in a cancer journey having your dr. ignore you and leave you in the dark until they have to deal with you.


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## joplin1975

I hope they get back to you soon!

(My husband was saying last night that this (this = my thyroid experience) has been eye opening for him, as a provider. He really never "saw" the experience from the patient's view point and has been totally shocked.)


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## Octavia

Nodakmom, I wish you had a scan scheduled...just to check for any spread of cancer cells. If that's something you want, can you push for it? (It needs to be done soon, while the cells are still "lit up" from the RAI.) I don't mean to stir the pot, but...


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## nodakmom

Octavia said:


> Nodakmom, I wish you had a scan scheduled...just to check for any spread of cancer cells. If that's something you want, can you push for it? (It needs to be done soon, while the cells are still "lit up" from the RAI.) I don't mean to stir the pot, but...


That's what I'm trying to find out. Was I supposed to be scheduled for one and the ball was dropped? If so, they need to squeeze me in either tomorrow or Monday I imagine. If not, what is their reasoning? They need to communicate with the patient better than this.


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## Octavia

Okay, good. I suspected that's what you were trying to accomplish...


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## nodakmom

The endo's office just called, there's no scan ordered, no plan to order one, and she won't see me until January 4th. The nurse said any follow up testing/scans will be ordered then. I explained I didn't want to be missing a step, but she was insistent there was nothing to do but wait.

I'm at a loss for words other than my only guess is my thyca is exactly as ONE other person's I've met over via the Thyroid Cancer Survivors' Association Support Community. Hers was almost identical to mine-- about same size, well encapsulated, no spread. She did not have a WBS until 6mo post RAI to confirm if there were any remaining cells. If there was she'd have to go through the RAI again, but I'm guessing there wasn't as she's 18mo post RAI now and is just monitored with Tg levels/bloodwork.

Edit: I just asked to have my surgeon's office call me again. They'd said from here out I was on to the Endo, the Endo's nurse made it sound like the surgeon should have ordered the scan.


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## Octavia

nodakmom said:


> The endo's office just called, there's no scan ordered, no plan to order one, and she won't see me until January 4th. The nurse said any follow up testing/scans will be ordered then. I explained I didn't want to be missing a step, but she was insistent there was nothing to do but wait.
> 
> I'm at a loss for words other than my only guess is my thyca is exactly as ONE other person's I've met over via the Thyroid Cancer Survivors' Association Support Community. Hers was almost identical to mine-- about same size, well encapsulated, no spread. She did not have a WBS until 6mo post RAI to confirm if there were any remaining cells. If there was she'd have to go through the RAI again, but I'm guessing there wasn't as she's 18mo post RAI now and is just monitored with Tg levels/bloodwork.
> 
> Edit: I just asked to have my surgeon's office call me again. They'd said from here out I was on to the Endo, the Endo's nurse made it sound like the surgeon should have ordered the scan.


Actually, that's not a bad plan. My post-RAI scan showed "yes there are still thyroid cells, but it's not a clean surgery, so they're probably just leftover thyroid cells" so that basically didn't tell us a whole lot, come to think of it. I THOUGHT I was supposed to have a 6-month scan (in a few weeks), but now my doctor's office is saying no, that's not the plan. Knowing what I know now, if I knew then that I could only get one scan, I probably would have chosen the 6 month scan, in all honesty. (I say this as if I would have had a choice...)

So just let the RAI do it's thang, and you'll get a much clearer picture in 6 months, when theoretically, nothing should be there!


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## joplin1975

I was going to say the same thing. I mean, it was nice to have a post-RAI scan and to know the amount of cells decreased significantly, etc etc etc...but there will still cells lighting up the scan...

...so the flip side was even if it wasn't "working," they wouldn't have been able to give me a follow up therapy dose. I had "maxed out" so we would have had to wait 6 months anyway.

It's hard when you see people on different schedules, etc, but I *think* in this case you aren't in any real danger.


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## nodakmom

Octavia said:


> Actually, that's not a bad plan. My post-RAI scan showed "yes there are still thyroid cells, but it's not a clean surgery, so they're probably just leftover thyroid cells" so that basically didn't tell us a whole lot, come to think of it. I THOUGHT I was supposed to have a 6-month scan (in a few weeks), but now my doctor's office is saying no, that's not the plan. Knowing what I know now, if I knew then that I could only get one scan, I probably would have chosen the 6 month scan, in all honesty. (I say this as if I would have had a choice...)
> 
> So just let the RAI do it's thang, and you'll get a much clearer picture in 6 months, when theoretically, nothing should be there!


Thank you for your opinion Octavia! :hugs:

I did just find a study that supports not doing a WBS if Tg levels are undetectable at the time of RAI, and have one base scan at 6mo-1yr. http://jcem.endojournals.org/content/87/4/1499.full

I still want to ask about it, and to find out just what my Tg level was (as I've forgotten to ask this whole time, I'll blame brain fog.) Hopefully the nurse can answer at least that for me.


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## Andros

nodakmom said:


> That's what I'm trying to find out. Was I supposed to be scheduled for one and the ball was dropped? If so, they need to squeeze me in either tomorrow or Monday I imagine. If not, what is their reasoning? They need to communicate with the patient better than this.


Oh, this is horrible. You know they should have scheduled for a scan! We all know this.

Sending prayers and good thoughts. You don't need anymore angst. This is so simple; why can't they do it right?

Hugs,


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## nodakmom

My surgeons PA called about noon. She confirmed there is no scan to be done, either by them or by the endo, at this time. So basically its just wait now until I meet with the endo on Jan 4.

Like joplin said, I too don't think I'm in any real danger. My thyca was encapsulated, no lymph node involvement noted. The only thing I don't like about waiting for a scan at 6 months is knowing I'll have to go thru this whole LID, hypo thing again. IDK what the chances of us getting thyrogen is here, we're not that large of a medical system.


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## I DClaire

I felt so unsettled reading this. It is beyond comprehension that healthcare professionals can be so thoughtless regarding patients they have to know need information and reassurance. Over the past 2 1/2 years, I can truly say I've crossed paths with some of the best medical practices..._and some of the worst. _

I have a dear friend (almost like a second mother to me) who is entering M. D. Anderson Medical Center in Houston next week for treatment of a rare breast cancer. She and her family say they have been treated royally, in every respect as though that huge facility was there for no one but them...with someone available 24/7 to answer any questions. If one hospital can do that, why can't they all?

Good luck, nodakmom. I'm glad there are members here who can share their own experiences - otherwise, I guess things would be even more unsettling.


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