Guest guest Posted January 16, 1998 Report Share Posted January 16, 1998 Hi, the uptake showed that I still have 15% of my thyroid, which probably explains why I'm not feeling completely exhausted. The down side is that it's not worthwhile doing a whole body scan, with so much tissue there. So the endo wants to give me 29mCi to kill the rest of the tissue, won't need to be in hosp. Has anyone else experienced this? Hanna TT 06/30/02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 1998 Report Share Posted January 16, 1998 Hi Christy, I'm going thru it slightly differently, cos they first gave me a very small dose and checked my neck area which showed on the computer a 15% remnant. Now the endo is going to give me 29mCi which he anticipates will kill off the remnant, he said anymore would make it a problem to be at home, I live with my 20 year old daughter, and he asked me how many bathrooms I have. Thankfully two. He also said that as soon as I take the dosage I can then begin to take the synthroid, I am 5 weeks post TT. It would be really interesting to know what % of your thyroid is left, and your taking 50mCi, did you have some isolation issues with that? I went to a surgeon with an excellent reputation here in Israel. I'm wondering if he left some behind because he was being careful at all costs not to damage my voice (I'm a professional singer). I guess I should speak to him, Let me know what happens, and good luck. Hanna Re: too much thyroid remnant > Hanna, > > I'm experiencing it right now! Unfortunately, that means I don't > have much in the way of an answer. I had my WBS last Thursday and > they found a " large remnant " but they didn't tell me just how big (I > will try to remember to ask for % uptake tomorrow). The radiologist > tried to palpate it when I asked him to show me where it was and > told me where he felt it. I think he was bluffing though...I can't > feel it and my surgeon can't feel it, think the radiologist was just > afraid to admit that. LOL! I had a recheck with my surgeon on > Monday and told him how the WBS went and about the remnant. He's > admittedly baffled by what " remnant " means because he took every bit > of grossly obvious thyroid tissue out. As he said, he " stripped it > bare " . His feeling on it is that it's either microscopic remnants > that have grown, I had some ectopic tissue (i.e. normal thyroid > tissue in an abnormal place), or it's a lymph node with mets. > > They did tell me that my WBS likely was adversely affected in its > sensitivity to pick up mets due to the thyroid remnant, although > they went ahead and did it. Absolutely nothing lit up besides the > remnant. They gave me 50 mCi instead of the anticipated 100-150 > because they were afraid that killing off that much thyroid tissue > at once might make me ill. I go back for my post-treatment scan > tomorrow. They did say that the larger dose might light up mets if > they are there but they still want to do my follow-up > hypo/scan/ablation in 6 months. > > Feel free to email me if you like. It sounds like we are walking > this path at the same time and it's always nice to have someone to > share it with. > > ChristyV > 2/02 TT for follicular thyca > 7/02 " large remnant " on scan/50mCi I-131/post-treatment scan > tomorrow! > > > > Hi, the uptake showed that I still have 15% of my thyroid, which > probably explains why I'm not feeling completely exhausted. The > down side is that it's not worthwhile doing a whole body scan, with > so much tissue there. So the endo wants to give me 29mCi to kill the > rest of the tissue, won't need to be in hosp. Has anyone else > experienced this? > > Hanna > > TT 06/30/02 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Hanna, I'm experiencing it right now! Unfortunately, that means I don't have much in the way of an answer. I had my WBS last Thursday and they found a " large remnant " but they didn't tell me just how big (I will try to remember to ask for % uptake tomorrow). The radiologist tried to palpate it when I asked him to show me where it was and told me where he felt it. I think he was bluffing though...I can't feel it and my surgeon can't feel it, think the radiologist was just afraid to admit that. LOL! I had a recheck with my surgeon on Monday and told him how the WBS went and about the remnant. He's admittedly baffled by what " remnant " means because he took every bit of grossly obvious thyroid tissue out. As he said, he " stripped it bare " . His feeling on it is that it's either microscopic remnants that have grown, I had some ectopic tissue (i.e. normal thyroid tissue in an abnormal place), or it's a lymph node with mets. They did tell me that my WBS likely was adversely affected in its sensitivity to pick up mets due to the thyroid remnant, although they went ahead and did it. Absolutely nothing lit up besides the remnant. They gave me 50 mCi instead of the anticipated 100-150 because they were afraid that killing off that much thyroid tissue at once might make me ill. I go back for my post-treatment scan tomorrow. They did say that the larger dose might light up mets if they are there but they still want to do my follow-up hypo/scan/ablation in 6 months. Feel free to email me if you like. It sounds like we are walking this path at the same time and it's always nice to have someone to share it with. ChristyV 2/02 TT for follicular thyca 7/02 " large remnant " on scan/50mCi I-131/post-treatment scan tomorrow! > Hi, the uptake showed that I still have 15% of my thyroid, which probably explains why I'm not feeling completely exhausted. The down side is that it's not worthwhile doing a whole body scan, with so much tissue there. So the endo wants to give me 29mCi to kill the rest of the tissue, won't need to be in hosp. Has anyone else experienced this? > Hanna > TT 06/30/02 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Yes I have had exactly the same thing. I had surgery done jan.16th total removal result papillary with 1 lymph node affected. Went for scan showed large remaining tissue had the 29mci came home to wait it out. Went on synthroid felt good but not normal now off of meds going hypo for 2nd scan. My doctor wants me to do larger dose at least 100mci no matter what the scan shows due to the size of my tumor and the lymph node involvement. If you want to talk I'm here. RENEE too much thyroid remnant Hi, the uptake showed that I still have 15% of my thyroid, which probably explains why I'm not feeling completely exhausted. The down side is that it's not worthwhile doing a whole body scan, with so much tissue there. So the endo wants to give me 29mCi to kill the rest of the tissue, won't need to be in hosp. Has anyone else experienced this? Hanna TT 06/30/02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 > I'm wondering if he left some behind > because he was being careful at all costs not to damage my voice > (I'm a professional singer). I guess I should speak to him, Let me > know what happens, and good luck. > Hanna > ----- Original Message ----- Hi, Hanna - From what I was told, they always leave some thyroid tissue behind, because there are so many things like vocal cords, nerves, parathyroids, etc in the area, and they don't want to damage those things. Though we refer to it as a total thyroidectomy, that's not really accurate, since it's not really total. It certainly could be that your surgeon was being particularly careful not to damage your vocal cords. Cheers, Alisa 2/15/2002: Nodule found during bad sore throat 2/27/2002: FNA - suspicious for pap 3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!! 4/9/2002: TT - Stage 2 pap encapsuled in 2.5 x 2 x 1.6 cm nodule, Hashimotos discovered 5/28/2002: TBS (2 mCi dose on 5/24) and 100 mCi RAI 6/6/2002: TBS - No sign of mets Currently - 140mcg Levoxyl Age: 48 Location: near Seattle WA Please feel free to email me privately anytime Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 15 % sounds high to me, but there are all sorts of possible explanations for it, and asking the surgeon is probably a good way to find out. To add to Alisa's comments, what we call a total thyroidectomy is often called a subtotal thyroidectomy for just the reason she mentions. Ian once referred to my watermelon analogy: removing all of the thyroid without risking vital surrounding body parts is like trying to remove all the red part of a watermelon without touching the white part. It's much safer to remove as much as possible, then ablate the rest. - NYC Hanna wrote: > > I'm wondering if he left some behind > > because he was being careful at all costs not to damage my voice > > (I'm a professional singer). I guess I should speak to him ... Alisa responded: > From what I was told, they always leave some thyroid tissue behind, > because there are so many things like vocal cords, nerves, > parathyroids, etc in the area, and they don't want to damage those > things. Though we refer to it as a total thyroidectomy, that's not > really accurate, since it's not really total. It certainly could be > that your surgeon was being particularly careful not to damage your > vocal cords. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2002 Report Share Posted August 1, 2002 Just a reminder ... You should be staying on the LID for at least 24 hours after you take the RAI. Same goes for the levothyroxine - it's generally recommended you wait 24 hours before beginning to take it. The reasons for both are the same - you want to give your thyroid remnant time to take up all the RAI before taking anything that might compete for space in it. I assume you've seen the letters about how to take levothyroxine, and also the precautions for after the RAI (yes, you need to be careful, even after a low dose). 11763 ..... Levothyroxine (T4) - HOW TO TAKE IT, HOW TO STORE IT (recommendations from Dr. Ain) 13768 ..... post-RAI precautions (links to previous posts) good luck - NYC hainsof wrote: > Hi Christy, > I'm going thru it slightly differently, cos they first gave me a very > small > dose and checked my neck area which showed on the computer a 15% remnant. > > Now the endo is going to give me 29mCi which he anticipates will kill off > > the remnant, he said anymore would make it a problem to be at home, I > live > with my 20 year old daughter, and he asked me how many bathrooms I have. > Thankfully two. He also said that as soon as I take the dosage I can then > > begin to take the synthroid, I am 5 weeks post TT. It would be really > interesting to know what % of your thyroid is left, and your taking > 50mCi, > did you have some isolation issues with that? I went to a surgeon with an > > excellent reputation here in Israel. I'm wondering if he left some behind > > because he was being careful at all costs not to damage my voice (I'm a > professional singer). I guess I should speak to him, Let me know what > happens, and good luck. > Hanna Quote Link to comment Share on other sites More sharing options...
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