A few questions about RAI, LID, WBS PLEASE!

[rellyrooly]

Hi all-

I guess I have been more depressed than I thought and haven't been here in a while.  Here is where I am...

I was scheduled for my RAI for Monday, Jan. 19th.  Got to DR office and found out my TSH which was a 24 was now down to 7!!!!  He said I must have had enough thyroid tissue that it kicked in.  I must admit, I started to feel better, not worse, like I should have been getting.  So, I had to have emergency Thyrogen injections to bring my numbers back up.  Did that for a couple days, then blood, and had my RAI on Thursday morning.  For those who had Thyrogen, do you feel like your elbows were going to break?  Man, mine are so sore; I can't fully straighten or fully bend.  I hate this.

So, I have been on my LID for well over 2 weeks by the time I had my RAI and I was very, very good...never cheated!  How long did you all stay on yours after your dose?  They told me 2-3 days after but didn't give me exact time so I want to make sure that I don't mess up and be on the safe side.  Plus, they told me that I need my WBS (whole body scan) 7-10 after my dose.  I have seen others do it earlier like 3 days but my doc says 7ish.  If I start eating normally, will this mess with my results?  I hate this, again.

I thought I was doing ok emotionally but now I see, as I write this, I am not.  I am so ready to been done with all of this.  I guess I am super hypo and feeling it but it doesn't make it any easier.  I can start my syntheroid on Sunday, thank heavens to that!  I will take 4 pills (125 each) the first day and then one a day after.  He also told me I could add a half a cytomel for the first 4 days.  Please let me know of all your course of actions so I have a sense of what I am doing is right.

Thanks all!
Cindy

[amela321]

I'm sorry this has been so hard for you.

The general recommendation is to start eating normally anywhere between 48-72 hours after RAI.  Any time within this span should be fine.

There are different schools of thought on when the post-RAI WBS should be done.  I've heard of them being done anywhere from 4 days to 8 days after RAI.  I wouldn't go any more than 7 days if your doctor has said 7-10 days.  Your scan might be a little more difficult to read, however, with as much healthy thyroid tissue as appears to have been left behind in your case.

I, personally, never had any side effects at all with Thyrogen.  I've heard of effects like typical hypothyroid symptoms and headaches, but hadn't heard anything about the problems you describe.  Have you been to the Genzyme website (makers of Thyrogen) to see what side effects they list?

Good luck to you, I hope you begin feeling better soon.  

Take care,

Amy
Papillary Thyroid Cancer
First diagnosed 1985--TT 1985
RAI 1985 and 1986
Recurrence 2008
Partial Central compartment dissection April 2008
RAI 175mCi July 2008
WBS January 2009-scan negative, but Tg is 8.3

[huncher]

Hi lady,
Gosh, you sure are a complicated case!! Why did your TSH go down instead of up???
stopped the cytomel and started the LID on Christmas and had the rai on 1-14 (102 mcu). I was told that I could eat normally right after the treatment and that I could start my synthroid after my body scan. Had body scan on 1-21 and restarted my meds at 125  (one a day).
Thankfully, I never got any of the hypo-hell or side effects from the treatment.

So I would say you can start eating normally (but that's just my opinion).
Hang in there, soon this will all a bad memory.

By the way, how did you make out with your vocal cords? I have an appointment with the Ear, Nose, Throat clinic in Pittsburgh on 2-5....can't wait. Hopefully they will be able to help me...short of breath and feel like there is always a big, giant glob in my throat that I just can't get out.
~Hugs and prayers
Lorraine

[rellyrooly]

BTW, I had 150 millicures