CancerCompass message board discussion started by Jenn1 on 5/9/2008 http://www.cancercompass.com/message-board/message/all,23876,0.htm Sun, 06 Jul 2008 00:00:00 GMT Sun, 06 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I had a TT 4.3.08.  I am scheduled for RAI in the next couple of weeks.  My doctor is not recommending the low iodine diet before RAI.  I have asked several times why I don’t need to do the LID and was told that they just didn’t see that it was necessary and that the RAI is effective when the LID is not done.  I feel pretty confident that this is ok as he is a leader in the industry in my city, but I just wanted to know if anyone else is in the same situation or has any information on this.  Thanks! Jenn1 Fri, 09 May 2008 00:00:00 GMT I am finding that there is no longer agreement on this topic among doctors.  Within my enodo practice there are four drs.  There is no agreement within.  I am told that if you take Thyrogen, the LID isn't necessary.  LID just makes your body hungry for the iodine and aids in the hypo state.  My endo let me use thyrogen but insisted I stay on the LID until my WBS.  I'm on my last day od isolation now.  Are you taking thyrogen? dinparadise Fri, 09 May 2008 00:00:00 GMT Thank you for your quick response.  Yes, I am going to take Thyrogen.  Also, I am currently on Cytomel, but will stop taking it on Monday.  They said that if my levels were right, I could do the RAI the following week, but it is more likely that it will take 2 weeks to get started. Jenn1 Fri, 09 May 2008 00:00:00 GMT If you are doing thyrogen you should proably just switch now to synthroid.  They had me on cytomel also ubtil they decided i was a candidate for thyrogen.  You said they were taking you off of your cytomel to prepare for RAI.  You don't go hypo if you are taking thyrogen.  That is a little confusing to me dinparadise Fri, 09 May 2008 00:00:00 GMT I had TT Feb 2007, had bodyscan and RAI in early March of 2007 and had bodyscan on anniversary Feb 2008.  I  have never been told to go on a low idiodine diet, when I brought it up - they said it was not necessary.  I did  have the thyrogen shots before the scan this year, etc............all went well, no cancer.  So, I think there is a lot of disagreement regarding this low iodine diet thing and in general with how thyroid cancer patients are handled with follow-up, etc.... elley Fri, 09 May 2008 00:00:00 GMT  On 5/9/2008 dinparadise wrote:If you are doing thyrogen you should proably just switch now to synthroid.  They had me on cytomel also ubtil they decided i was a candidate for thyrogen.  You said they were taking you off of your cytomel to prepare for RAI.  You don't go hypo if you are taking thyrogen.  That is a little confusing to meI am a bit confused myself as I thought the Tyrogen was supposed to take the place of having to come off the meds.  I talk to the nurse on Monday so I guess I will need to get some clarification then... Jenn1 Fri, 09 May 2008 00:00:00 GMT I had TT on 4/23/08 and am waiting to hear back about the wbs and the rai.  My surgeon said that he didn't think I would be on the lid, but I kind of thought that I would need to hear that from the nuclear meds doctor as well?  This is so confusing and so many "cooks" are involved.  I'm feeling like I'm the last to know anything.  It helps to hear that others are doing well without the lid.... as of yet, I have no meds and am starting to feel tired (and maybe a little cranky???).... tink2002 Fri, 09 May 2008 00:00:00 GMT  On 5/9/2008 Jenn1 wrote: On 5/9/2008 dinparadise wrote:If you are doing thyrogen you should proably just switch now to synthroid.  They had me on cytomel also ubtil they decided i was a candidate for thyrogen.  You said they were taking you off of your cytomel to prepare for RAI.  You don't go hypo if you are taking thyrogen.  That is a little confusing to meI am a bit confused myself as I thought the Tyrogen was supposed to take the place of having to come off the meds.  I talk to the nurse on Monday so I guess I will need to get some clarification then... I know that the question of LID with thyrogen is up in the air.  But the need for hypo hell is not.  Thyrogen is definitely a replacement for the need to go off your meds and go hypo.  That is what everyone is so excited about.  Hypo hell is named that for a reason.  I'm told it's horrible.  If you are lucky enough to find a dr well versed in thyrogen, you will pass up hypo hell.  Thyrogen gives the rai a push or boost into your system that you used to have to go hypo to achieve;you don't do both.  You definitely need to talk to you dr before they take you off of meds. dinparadise Fri, 09 May 2008 00:00:00 GMT As I read this post, I wonder how so many docs can minimize the LID when it's clearly studied and is proven to uptake the radio iodine substantially better at the site of tumor/thyroid then without it. I just think if this extra step is in any way helpful, then you must consider it. It's short and not as painful as one might think IF you are prepared. The suffering for Hypo is the hypo moreso then the LID. I know from my daugthers strange uptake after her treatment. First question doc asked was what did she eat. Did she eat seafood..... Etc. We followed the diet religiously so I know the peculiar scan uptake was not food. This helped them rule out that possibility at least.  denmurpar Sat, 10 May 2008 00:00:00 GMT Please see the below link for more information on LID before Scan.http://www.thyroidcancerdoctor.com/ thycaseattle Sun, 11 May 2008 00:00:00 GMT  On 5/11/2008 thycaseattle wrote:Please see the below link for more information on LID before Scan.http://www.thyroidcancerdoctor.com/  Went to the website.  It backs up everything I've been told too.  I'm not sure why some doctors are not doing it anymore; especially with the use of Thyrogen.  I agree it is probably a great combination with Thyrogen. dinparadise Mon, 12 May 2008 00:00:00 GMT Curious to know how you are doing on Synthroid -  have you noticed any of the side effects that go along with taking this drug? KathyMMM Mon, 12 May 2008 00:00:00 GMT  On 5/12/2008 KathyMMM wrote:Curious to know how you are doing on Synthroid -  have you noticed any of the side effects that go along with taking this drug? So far I'm feeling good.  I get a little tired late in the day.  But I've been able to work everyday except while I was in isolation.  No side effects to Cytomel, Synthroid (which I have been on for 4 weeks), Thyrogen or RAI.  I guess I'm one of the lucky ones.  I'll see how lucky I am after my WBS tomorrow! dinparadise Tue, 13 May 2008 00:00:00 GMT