Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 > Hey all, > > I am having the rest of my thyroid removed on 7/22 and know that 6-8 weeks later I will have to do RAI. But when (and how) is that scheduled? My endo told me he didn't want to see me again until 6 weeks after my surgery. That doesn't make much sense to me. Hi, beth - you're right on top of things. It ABSOLUTELY doesn't make sense. I would be calling the endo now and talking to him about this. Perhaps he is planning for you to deal directly with the nuc med docs to get the RAI done, but SOMEONE has to coordinate things medically. I had briefly met my endo just after having the FNA. The surgeon put me on a small dose of T4 postop. Before my surgery, I set up an appt with the endo for about a little less than a week post-op (I could have made it sooner, in hindsight). At that time, he went over the pathology report, talked to me about the RAI and future monitoring, and answered questions. Then, his nurse sat down with me and she called the hospital to set up the entire RAI schedule with them (they have a sheet with dates you fill in for every step..stopping T4, starting and stopping Cytomel, starting LID, blood tests, scan dose, scan, treatment. Not a bad thing to make up on your own if you don't get one). I actually got on the phone with them and made sure I understood the timing of things. I was completely turned over to the nuclear med dept at the hospital (making sure copies of everything went to my endo), until after my RAI. My endo called me just after I got home from isolation and talked to me about starting meds, then we met 6 weeks later after I had a blood test. I know that the endo coordinates things completely for some people..just depends on the doctors. Let us know what you find out. Cheers, Alisa Currently - TSH 0.09, 140mcg Levoxyl 2/15/2002: Nodule found 2/27/2002: FNA 3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!! 4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos 5/28/2002: 100 mCi RAI 12/16/02: WBS (5 mCi): clean scan - no thyroid tissue in body!!! Age: 49 -- Location: near Seattle WA --- Check out my posts: Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472 My LID - http://groups.yahoo.com/group/Thyca/message/15872 My RAI - http://groups.yahoo.com/group/Thyca/message/15873 LID stuff - http://groups.yahoo.com/group/Thyca/message/25430 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 > Hey all, > > I am having the rest of my thyroid removed on 7/22 and know that 6-8 weeks later I will have to do RAI. But when (and how) is that scheduled? My endo told me he didn't want to see me again until 6 weeks after my surgery. That doesn't make much sense to me. Hi, beth - you're right on top of things. It ABSOLUTELY doesn't make sense. I would be calling the endo now and talking to him about this. Perhaps he is planning for you to deal directly with the nuc med docs to get the RAI done, but SOMEONE has to coordinate things medically. I had briefly met my endo just after having the FNA. The surgeon put me on a small dose of T4 postop. Before my surgery, I set up an appt with the endo for about a little less than a week post-op (I could have made it sooner, in hindsight). At that time, he went over the pathology report, talked to me about the RAI and future monitoring, and answered questions. Then, his nurse sat down with me and she called the hospital to set up the entire RAI schedule with them (they have a sheet with dates you fill in for every step..stopping T4, starting and stopping Cytomel, starting LID, blood tests, scan dose, scan, treatment. Not a bad thing to make up on your own if you don't get one). I actually got on the phone with them and made sure I understood the timing of things. I was completely turned over to the nuclear med dept at the hospital (making sure copies of everything went to my endo), until after my RAI. My endo called me just after I got home from isolation and talked to me about starting meds, then we met 6 weeks later after I had a blood test. I know that the endo coordinates things completely for some people..just depends on the doctors. Let us know what you find out. Cheers, Alisa Currently - TSH 0.09, 140mcg Levoxyl 2/15/2002: Nodule found 2/27/2002: FNA 3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!! 4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos 5/28/2002: 100 mCi RAI 12/16/02: WBS (5 mCi): clean scan - no thyroid tissue in body!!! Age: 49 -- Location: near Seattle WA --- Check out my posts: Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472 My LID - http://groups.yahoo.com/group/Thyca/message/15872 My RAI - http://groups.yahoo.com/group/Thyca/message/15873 LID stuff - http://groups.yahoo.com/group/Thyca/message/25430 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 > Hey all, > > I am having the rest of my thyroid removed on 7/22 and know that 6-8 weeks later I will have to do RAI. But when (and how) is that scheduled? My endo told me he didn't want to see me again until 6 weeks after my surgery. That doesn't make much sense to me. Hi, beth - you're right on top of things. It ABSOLUTELY doesn't make sense. I would be calling the endo now and talking to him about this. Perhaps he is planning for you to deal directly with the nuc med docs to get the RAI done, but SOMEONE has to coordinate things medically. I had briefly met my endo just after having the FNA. The surgeon put me on a small dose of T4 postop. Before my surgery, I set up an appt with the endo for about a little less than a week post-op (I could have made it sooner, in hindsight). At that time, he went over the pathology report, talked to me about the RAI and future monitoring, and answered questions. Then, his nurse sat down with me and she called the hospital to set up the entire RAI schedule with them (they have a sheet with dates you fill in for every step..stopping T4, starting and stopping Cytomel, starting LID, blood tests, scan dose, scan, treatment. Not a bad thing to make up on your own if you don't get one). I actually got on the phone with them and made sure I understood the timing of things. I was completely turned over to the nuclear med dept at the hospital (making sure copies of everything went to my endo), until after my RAI. My endo called me just after I got home from isolation and talked to me about starting meds, then we met 6 weeks later after I had a blood test. I know that the endo coordinates things completely for some people..just depends on the doctors. Let us know what you find out. Cheers, Alisa Currently - TSH 0.09, 140mcg Levoxyl 2/15/2002: Nodule found 2/27/2002: FNA 3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!! 4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos 5/28/2002: 100 mCi RAI 12/16/02: WBS (5 mCi): clean scan - no thyroid tissue in body!!! Age: 49 -- Location: near Seattle WA --- Check out my posts: Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472 My LID - http://groups.yahoo.com/group/Thyca/message/15872 My RAI - http://groups.yahoo.com/group/Thyca/message/15873 LID stuff - http://groups.yahoo.com/group/Thyca/message/25430 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2003 Report Share Posted July 10, 2003 Hi, My RAI was also not scheduled untill I was way too hypo and depressed and feeling really bad. No one coordinated my treatment, but me! I was without meds for 9 weeks! Then when I finally got to that part(with the nuc. med dept. at the hospital) I was told my WBS was wrong and the ONLY person who could schedule my RAI was going out of town for 2 weeks. I thought I was going to die! I made some phone calls to my Radiologist Oncologist and my GP, and finally got some things moving, but I know now that EVERYTHING should be scheduled BEFORE I go off meds next time. Good Luck Eva Quote Link to comment Share on other sites More sharing options...
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