Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 Christy, Yes I completed RAI without the benefit of LID. In fact the first I've even heard to do LID before scanning waS ON this sight. You can bet my next scan will be done after I've done the low iodine diet for 2 weeks. I am putting a call into my Dr. today to ask her about it. She went to a conference on Thyrogen not too long ago and I am anxious to hear what she thinks. Kathi pap dx 1998 lymph node positive 1.5 cm nodule size RAI 2/00 1 clean scan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 Well Christy, Aren't you lucky you got hypo so quick. It's real unusual for a dr to check the TSH so soon and so often, that's a real plus, too. Next yr you'll know better and be better prepared regarding LID. Just to let you know, I had 3 RAIs with no LID. That was pre-puter, I had asked the drs if I should be on a special diet and they just said cut out iodized salt and seafood. Chances are you will still have positive results from the RAI, remember, they have done them for years, and in many cases are still doing them, without benefit of LID. Good Luck in the future. lindalee@... dx 12-96 follicular w/ bone mets 4 RAI= 840mCi 300mcg Synthroid HPTH Pgh., Pa ChristyW wrote: > Hi everyone... > > I'm fairly new to thyca (TT 3/10/01 and 145 mCi RAI > 3/28/01)and have kept myself fairly well informed > during the entire process. I do, however, have some > concerns regarding my RAI. > > My TT was done in two stages: LL 2/26/01 and TT > 3/10/01. I believe I began going hypo after the LL. > My doctor gave me 6 weeks worth of lab slips for TSH > checks following my TT and instructed me to start my > low iodine diet on the third week. Well, I reached > TSH RAI levels during the first week (TSH=92) and she > immediately admitted me to the hospital for my > treatment. I never did the low iodine diet! > > After reading all the literature about the reasons for > the low iodine diet, I am a bit concerned about the > success of my RAI. She never pulled a Tg, either, so > I have no baseline to go by. > > Did any of you complete RAI WITHOUT completing a low > iodine diet?? Thanks for listening! > > Christy > > --- Alan Goodman wrote: > > Ian said: > > > > >What could be more useful is a simple testing strip > > for iodine, like the ones > > >that diabetics use. It wouldn't have to be terribly > > sophisticated - 3 colour > > >bands would do: > > ><5ug/100g = 'OK', > > >5-10ug/100g = 'caution/reduce intake', > > >>10ug/100g = 'avoid'. > > > > > >Anyone got any contacts? > > > > I tried to do this years ago - with negative > > results. > > > > The standard test for Iodine is Starch - it turns it > > a nice dark blue. > > > > Unfortunately it is just not sensitive enough for > > the microgram > > quantities that we need to test for. > > > > I attach my post of October '97 that details the > > test that we did. > > > > You may take this as a challenge to do better !! > > > > Alan > > ==== > > Date: Wed, 22 Oct 1997 00:49:12 +0100 > > To: thyca@... > > > > Subject: No easy test for Iodine :-( > > Sender: thyca-approval@... > > Reply-To: thyca@... > > > > On the basis that even a negative contribution is > > still a contribution. > > > > With all this iodine diet stuff going on and with me > > preparing to go on my > > first iodine free diet I thought:- > > > > Wouldn't it be nice if there was a simple test > > for Iodine in food > > > > So I contacted my industrial chemist friend and we > > played at laboratories > > in my kitchen over the weekend. > > > > I am sorry to report that there is a nice simple > > starch test for Iodine but > > it does not seem sensitive enough to detect the > > trace amounts present in > > food. > > > > Details below for the curious and for for anybody > > who wants to take > > research further. This is a challenge to do better > > than we did. > > > > Now does anybody have access to a mass spectrograph > > - maybe that would be > > more sesntive! > > > > Alan > > > > P.S. By Industrial chemist friend works for a > > distillery company that makes > > spirits. He does bring some work home occasionally > > which I help him test > > <g> So we are still on good terms even after this > > failure! > > > > Details. > > The test for Iodine is starch. Iodine in starch > > turns a nice dark shade of > > blue which is easy to see. Iodine is normaly a part > > of an Iodide group so > > you have first seperate it out into free Iodine by > > oxidiseing it. > > > > What we did: > > > > 1) take your test sample (food or whatever) and > > oxidise it. We used sodium > > hypochlorate - but household bleach should work as > > this is the main > > ingredient. > > > > 2) Add some starch. We used liquid starch - but you > > can make starch in the > > kitchen by heating plain flour and water. > > > > 3) Look for the dark blue color. If present it shows > > that there is Iodine > > there. > > > > Our results: > > > > a) On a test sample of potassium iodide - even at > > the most extreme > > dilutions - this test was effective. > > > > On any food sample - no matter what we tried - we > > could not detect the > > iodine. > > We tested iodized salt solution, a piece of fish, > > some milk. > > > > All our food results were negative. > > > > Our conclusion: > > Iodine is such a small trace element in food that > > this test is not > > sensitive enough for our purposes. > > -- > > London, England > > dx 9/97, tt 10/97; pap/fol with spine and rib mets; > > RAI(100 mCi > > 12/97, 244mCi 10/98); 150ug T4; -ve scan, +ve Tg; > > bilateral neck > > dissection 7/99; EBR (60 Gray) to neck 10-11/99; > > 5AZA trial 9/2000; > > Retinol trial 2/2001; Tg 238 > > ICQ# 67445221 > > > > ===== > Christy > > 01/18/01 suspicious FNA; 2/26/01 LL; 3/10/01 TT (2.5 cm follicular and .9 cm papillary); 3/28/01 145 mCi RAI; 4/7/01 first scan no mets w/uptake found > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 Many of us did not do the LID in the beginning. I didn't. There was no Thyca list then (1994....we had never even heard of the Internet 'way back then') and I had no idea of the importance of LID. I didn't know about the LID until later and I have strictly followed it for all my scans/treatment since then. My Endo now gives out a copy of the LID from the thyca website to his patients. Hard to say how much this may have effected your treatment. Did you have good uptake? Too bad about the Tg.....it is a good reference point. Make sure they send blood off for a Tg each time you are hypo and plan to follow the LID for your next scan/ablative dose! Marilyn (dx '94-pap w/lung metastases - 5 pos scans/435mCi's - scans 6 & 7 clean) ChristyW wrote: > Hi everyone... > > I'm fairly new to thyca (TT 3/10/01 and 145 mCi RAI > 3/28/01)and have kept myself fairly well informed > during the entire process. I do, however, have some > concerns regarding my RAI. > > My TT was done in two stages: LL 2/26/01 and TT > 3/10/01. I believe I began going hypo after the LL. > My doctor gave me 6 weeks worth of lab slips for TSH > checks following my TT and instructed me to start my > low iodine diet on the third week. Well, I reached > TSH RAI levels during the first week (TSH=92) and she > immediately admitted me to the hospital for my > treatment. I never did the low iodine diet! > > After reading all the literature about the reasons for > the low iodine diet, I am a bit concerned about the > success of my RAI. She never pulled a Tg, either, so > I have no baseline to go by. > > Did any of you complete RAI WITHOUT completing a low > iodine diet?? Thanks for listening! > > Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 Many of us did not do the LID in the beginning. I didn't. There was no Thyca list then (1994....we had never even heard of the Internet 'way back then') and I had no idea of the importance of LID. I didn't know about the LID until later and I have strictly followed it for all my scans/treatment since then. My Endo now gives out a copy of the LID from the thyca website to his patients. Hard to say how much this may have effected your treatment. Did you have good uptake? Too bad about the Tg.....it is a good reference point. Make sure they send blood off for a Tg each time you are hypo and plan to follow the LID for your next scan/ablative dose! Marilyn (dx '94-pap w/lung metastases - 5 pos scans/435mCi's - scans 6 & 7 clean) ChristyW wrote: > Hi everyone... > > I'm fairly new to thyca (TT 3/10/01 and 145 mCi RAI > 3/28/01)and have kept myself fairly well informed > during the entire process. I do, however, have some > concerns regarding my RAI. > > My TT was done in two stages: LL 2/26/01 and TT > 3/10/01. I believe I began going hypo after the LL. > My doctor gave me 6 weeks worth of lab slips for TSH > checks following my TT and instructed me to start my > low iodine diet on the third week. Well, I reached > TSH RAI levels during the first week (TSH=92) and she > immediately admitted me to the hospital for my > treatment. I never did the low iodine diet! > > After reading all the literature about the reasons for > the low iodine diet, I am a bit concerned about the > success of my RAI. She never pulled a Tg, either, so > I have no baseline to go by. > > Did any of you complete RAI WITHOUT completing a low > iodine diet?? Thanks for listening! > > Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 Nope, I never did do a " no iodine diet " because my endo didn't encourage me to, and I didn't know about it anyway. He only suggested I stay away from seafood while hypo, etc... Did the RAI, did the scan right after, and then a year later had a clean scan while hypo and staying away from seafood, and so I guess it worked for me! Sandy pap thyca dx 9/99, TT 10/99, scan 11/99, clean scan 11/00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 I reached TSH RAI levels during the first week (TSH=92) and she immediately admitted me to the hospital for my treatment. I never did the low iodine diet! After reading all the literature about the reasons for the low iodine diet, I am a bit concerned about the success of my RAI. She never pulled a Tg, either, so I have no baseline to go by. Did any of you complete RAI WITHOUT completing a low iodine diet?? Thanks for listening! ===== Christy 01/18/01 suspicious FNA; 2/26/01 LL; 3/10/01 TT (2.5 cm follicular and .9 cm papillary); 3/28/01 145 mCi RAI; 4/7/01 first scan no mets w/uptake found Hi Christy, Yes, I did RAI without LID, 19 years ago. Recently, I was going hypo for a scan, but after having reached a TSH of 38.2, with a Tg of <.9, and antibodies of < 2.0, I was permitted to go back on my Synthroid. from NE Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 I had my first RAI of 100 mCi's on 5/26/00. I did not do the LID since my Nuc Med Dr said it wasn't necessary - stupid me. I didn't know any better then. I was taking thyroid vitamins - high in iodine too! I had another ablation RAI of 150 mCi's on 1/19/01 because my Tg was 8.8 while suppressed and then 357 when hypo. My first ENT never did a baseline Tg test either so my first one wasn't until 6 weeks after my first RAI when I got a new Dr who was an Endo. That's my experience. Hope yours turns out better. Papillary Thyroid Cancer w/ Lymph Node involvement pt 3/1/00, tt 4/12/00 RAI 100 mCi's 5/26/00 Tg 8.8 while suppressed - Tg 357 with TSH of 96 on 12/27/00 2nd RAI 150 mCi's 1/19/01, Synthroid .150 mg threegolfers@... No easy test for Iodine :-( > > Sender: thyca-approval@... > > Reply-To: thyca@... > > > > On the basis that even a negative contribution is > > still a contribution. > > > > With all this iodine diet stuff going on and with me > > preparing to go on my > > first iodine free diet I thought:- > > > > Wouldn't it be nice if there was a simple test > > for Iodine in food > > > > So I contacted my industrial chemist friend and we > > played at laboratories > > in my kitchen over the weekend. > > > > I am sorry to report that there is a nice simple > > starch test for Iodine but > > it does not seem sensitive enough to detect the > > trace amounts present in > > food. > > > > Details below for the curious and for for anybody > > who wants to take > > research further. This is a challenge to do better > > than we did. > > > > Now does anybody have access to a mass spectrograph > > - maybe that would be > > more sesntive! > > > > Alan > > > > P.S. By Industrial chemist friend works for a > > distillery company that makes > > spirits. He does bring some work home occasionally > > which I help him test > > <g> So we are still on good terms even after this > > failure! > > > > Details. > > The test for Iodine is starch. Iodine in starch > > turns a nice dark shade of > > blue which is easy to see. Iodine is normaly a part > > of an Iodide group so > > you have first seperate it out into free Iodine by > > oxidiseing it. > > > > What we did: > > > > 1) take your test sample (food or whatever) and > > oxidise it. We used sodium > > hypochlorate - but household bleach should work as > > this is the main > > ingredient. > > > > 2) Add some starch. We used liquid starch - but you > > can make starch in the > > kitchen by heating plain flour and water. > > > > 3) Look for the dark blue color. If present it shows > > that there is Iodine > > there. > > > > Our results: > > > > a) On a test sample of potassium iodide - even at > > the most extreme > > dilutions - this test was effective. > > > > On any food sample - no matter what we tried - we > > could not detect the > > iodine. > > We tested iodized salt solution, a piece of fish, > > some milk. > > > > All our food results were negative. > > > > Our conclusion: > > Iodine is such a small trace element in food that > > this test is not > > sensitive enough for our purposes. > > -- > > London, England > > dx 9/97, tt 10/97; pap/fol with spine and rib mets; > > RAI(100 mCi > > 12/97, 244mCi 10/98); 150ug T4; -ve scan, +ve Tg; > > bilateral neck > > dissection 7/99; EBR (60 Gray) to neck 10-11/99; > > 5AZA trial 9/2000; > > Retinol trial 2/2001; Tg 238 > > ICQ# 67445221 > > > > > ===== > Christy > > 01/18/01 suspicious FNA; 2/26/01 LL; 3/10/01 TT (2.5 cm follicular and .9 cm papillary); 3/28/01 145 mCi RAI; 4/7/01 first scan no mets w/uptake found > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 >She never pulled a Tg, either, so I have no baseline to go by. Christy, Don't worry about not having a " baseline " Tg from before your RAI ablation. All RAI treatments are supposed to bring your Tg down near zero (actually, usually below 2.0). So whatever your Tg was before doesn't matter. Best wishes, --Carmen in Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.