Guest guest Posted June 23, 2003 Report Share Posted June 23, 2003 In a message dated 6/23/03 8:04:09 PM Central Daylight Time, bcured@... writes: << This may be a silly basic question nbut here it goes. If Thyrogen is available why do so many of us keep going hypo? >> My endo wouldn't let me do Thyrogen on my 6th year, which was to be my " graduation " (missed the 5-year scan), because he didn't want to take the chance of getting a false negative. As it turned out, I had a recurrence and that put me back to sq #1. I'm now 2 years into this second round (originally dxd 1994), and he thinks it will be all right for this interim scan. He said there is a 10% chance of getting a false neg wtih Thyrogen and a 2% chance with hypo. I was going to do hypo, rather than take that chance, but my brother became critically ill and I had to be out of town a couple of times, and may have go out of town again. Soooo, with that, I decided maybe this is the year to do the Thyrogen. So far, I'm not impressed with it, and this is just my first day on the diet. I think it's easier to be hypo. I've learned over 9 years how to pace myself and deal with that, and I'm struggling with this diet and fear I'll eat something I shouldn't and mess up the scans. That brings up another thing. I hate the scans. I'm sure the machine is going to crush me. Now, I find out with the Thyrogen, I have to have 2 scans! LOL! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2003 Report Share Posted June 23, 2003 In a message dated 6/23/03 8:04:09 PM Central Daylight Time, bcured@... writes: << This may be a silly basic question nbut here it goes. If Thyrogen is available why do so many of us keep going hypo? >> My endo wouldn't let me do Thyrogen on my 6th year, which was to be my " graduation " (missed the 5-year scan), because he didn't want to take the chance of getting a false negative. As it turned out, I had a recurrence and that put me back to sq #1. I'm now 2 years into this second round (originally dxd 1994), and he thinks it will be all right for this interim scan. He said there is a 10% chance of getting a false neg wtih Thyrogen and a 2% chance with hypo. I was going to do hypo, rather than take that chance, but my brother became critically ill and I had to be out of town a couple of times, and may have go out of town again. Soooo, with that, I decided maybe this is the year to do the Thyrogen. So far, I'm not impressed with it, and this is just my first day on the diet. I think it's easier to be hypo. I've learned over 9 years how to pace myself and deal with that, and I'm struggling with this diet and fear I'll eat something I shouldn't and mess up the scans. That brings up another thing. I hate the scans. I'm sure the machine is going to crush me. Now, I find out with the Thyrogen, I have to have 2 scans! LOL! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2003 Report Share Posted June 23, 2003 > This may be a silly basic question nbut here it goes. If Thyrogen is > available why do so many of us keep going hypo? It seems like more > doctors are suggesting Thyrogen. Personally I know that my endo, and > the head of the endo dept at the University Of Arizona and I Mayo > all suggest Thyrogen. However as I read our postings I see all of us > going into " Hypo Hell " all the time. What's the deal? > KIM Hi, Kim I asked a similar question a couple of days ago. I've seen on this website that thyrogen is relatively new and has a history of giving false negatives. My own endocrinologist has said that my next scan can be done using thyrogen but I am having doubts. I had my PT and TT in July 2002. My first post-surgery scan showed three spots of thyroid remnant in the neck. At my six month scan in April, those spots were gone and my scan was " clean " but my hypo Tg was 3.8. My endocrinologist feels that I am a candidate for thyrogen but, like I said I am having doubts. I want the most full-proof scanning procedure possible. If there is a chance of a false negative when there really is something going on, I don't want to risk that. OTOH, I don't relish the thought of going hypo again. It really only amounts to three bad weeks, but with three kids to keep up with, it's difficult to be hypo. But again, going hypo is a small price to pay for a more definitive picture of what's going on. Can you tell I'm ambivalent? LOL!! Any advice would be much appreciated. (Thank you, Keira) n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2003 Report Share Posted June 23, 2003 > This may be a silly basic question nbut here it goes. If Thyrogen is > available why do so many of us keep going hypo? It seems like more > doctors are suggesting Thyrogen. Personally I know that my endo, and > the head of the endo dept at the University Of Arizona and I Mayo > all suggest Thyrogen. However as I read our postings I see all of us > going into " Hypo Hell " all the time. What's the deal? > KIM Hi, Kim I asked a similar question a couple of days ago. I've seen on this website that thyrogen is relatively new and has a history of giving false negatives. My own endocrinologist has said that my next scan can be done using thyrogen but I am having doubts. I had my PT and TT in July 2002. My first post-surgery scan showed three spots of thyroid remnant in the neck. At my six month scan in April, those spots were gone and my scan was " clean " but my hypo Tg was 3.8. My endocrinologist feels that I am a candidate for thyrogen but, like I said I am having doubts. I want the most full-proof scanning procedure possible. If there is a chance of a false negative when there really is something going on, I don't want to risk that. OTOH, I don't relish the thought of going hypo again. It really only amounts to three bad weeks, but with three kids to keep up with, it's difficult to be hypo. But again, going hypo is a small price to pay for a more definitive picture of what's going on. Can you tell I'm ambivalent? LOL!! Any advice would be much appreciated. (Thank you, Keira) n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2003 Report Share Posted June 23, 2003 > This may be a silly basic question nbut here it goes. If Thyrogen is > available why do so many of us keep going hypo? It seems like more > doctors are suggesting Thyrogen. Personally I know that my endo, and > the head of the endo dept at the University Of Arizona and I Mayo > all suggest Thyrogen. However as I read our postings I see all of us > going into " Hypo Hell " all the time. What's the deal? > KIM Hi, Kim I asked a similar question a couple of days ago. I've seen on this website that thyrogen is relatively new and has a history of giving false negatives. My own endocrinologist has said that my next scan can be done using thyrogen but I am having doubts. I had my PT and TT in July 2002. My first post-surgery scan showed three spots of thyroid remnant in the neck. At my six month scan in April, those spots were gone and my scan was " clean " but my hypo Tg was 3.8. My endocrinologist feels that I am a candidate for thyrogen but, like I said I am having doubts. I want the most full-proof scanning procedure possible. If there is a chance of a false negative when there really is something going on, I don't want to risk that. OTOH, I don't relish the thought of going hypo again. It really only amounts to three bad weeks, but with three kids to keep up with, it's difficult to be hypo. But again, going hypo is a small price to pay for a more definitive picture of what's going on. Can you tell I'm ambivalent? LOL!! Any advice would be much appreciated. (Thank you, Keira) n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2003 Report Share Posted June 23, 2003 > This may be a silly basic question nbut here it goes. > If Thyrogen is available why do so many of us keep going hypo? This listserv has an abundance of newly diagnosed folks on it. Many have just gone thru a TT and are preping for their first scan while others were perhaps diagnosed a year ago and are just about to have a follow-up scan. Thyrogen is recommended for use after the patient has had at least one clean scan since the accuracy is not as good as a hypo scan. The demographics of the group just don't fit the recommended usage for Thyrogen. Also keep in mind that Thyrogen was only approved by the FDA in 1999, so all Drs. are not yet comfortable with it. I have been hypo 7 times for scanning (1st 5 were positive due to lung mets), but since scans 6 & 7 were clean, I used Thyrogen for the first time last summer and will do so again next month for scan #9. Marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2003 Report Share Posted June 23, 2003 > This may be a silly basic question nbut here it goes. > If Thyrogen is available why do so many of us keep going hypo? This listserv has an abundance of newly diagnosed folks on it. Many have just gone thru a TT and are preping for their first scan while others were perhaps diagnosed a year ago and are just about to have a follow-up scan. Thyrogen is recommended for use after the patient has had at least one clean scan since the accuracy is not as good as a hypo scan. The demographics of the group just don't fit the recommended usage for Thyrogen. Also keep in mind that Thyrogen was only approved by the FDA in 1999, so all Drs. are not yet comfortable with it. I have been hypo 7 times for scanning (1st 5 were positive due to lung mets), but since scans 6 & 7 were clean, I used Thyrogen for the first time last summer and will do so again next month for scan #9. Marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2003 Report Share Posted June 23, 2003 > This may be a silly basic question nbut here it goes. > If Thyrogen is available why do so many of us keep going hypo? This listserv has an abundance of newly diagnosed folks on it. Many have just gone thru a TT and are preping for their first scan while others were perhaps diagnosed a year ago and are just about to have a follow-up scan. Thyrogen is recommended for use after the patient has had at least one clean scan since the accuracy is not as good as a hypo scan. The demographics of the group just don't fit the recommended usage for Thyrogen. Also keep in mind that Thyrogen was only approved by the FDA in 1999, so all Drs. are not yet comfortable with it. I have been hypo 7 times for scanning (1st 5 were positive due to lung mets), but since scans 6 & 7 were clean, I used Thyrogen for the first time last summer and will do so again next month for scan #9. Marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2003 Report Share Posted June 23, 2003 > > > This may be a silly basic question nbut here it > > goes. > > > If Thyrogen is available why do so many of us keep > > going hypo? > > Hi All, Just wanted to add my 2 cents. I live in London Ontario Canada where we have a nuclear medicine physician participating in multi-center trials of Thyrogen. He was working with Thyrogen years before it was approved by the FDA and long before Health Canada approved it in May 2002. Anyway, when I was diagnosed in the summer of 2000, my endo told me that he would refer me to this doctor to discuss RAI. I was in a low risk category, age 32, female, papillary thyca follicular variant, tumour size 1.5 cm, no spread, not found in lymph nodes, etc. Conceivably, I could have opted not to have RAI. I had heard some horror stories about hypo-hell and was very busy at a new job at the time, so going hypo really didn't appeal to me. Since RAI was only suggested as an ablation (preventive measure), and my doctor had a lot of experience using Thyrogen, I decided to go that route. I had 100 mCi RAI with Thyrogen in Feb/01. When I went back to my endo afterwards, he told me privately that he would have done the same thing in my position. Other than a remnant in my neck, nothing else was detected on my WBS. I am unable to rely on Tg testing because of antibodies. In Nov/01, I had a Thyrogen scan and was disappointed that there was still a small remnant in my neck. I underwent a second treatment dose of 100 mCi RAI with Thyrogen in Sep/02. One of the things I asked my nuclear medicine specialist is whether my original ablation with Thyrogen failed. He said no, that approximately 15% of ablations need a second treatment dose when the patient goes hypo, and he has no reason to believe that the rate would be any different with Thyrogen. When I saw him in Sep/02, he had finished collecting data for his share of the multi-center trial of Thyrogen for treatment doses of RAI. He told me that out of about 100 patients, there has only been one time when he felt that Thyrogen was a complete failure. Overall, he said he was " pleased " with the results and will continue offering Thyrogen to patients for Tg tests, WBS and treatment/ablative doses. I had another long talk with my endo last Feb/03, and he still supports the Thyrogen-RAI treatment combos I have received. He'd do the same thing he tells me privately. Of course with any new procedure, it takes time to get the protocol just right, but he is convinced that this is a great development for thyca patients. Another positive to Thyrogen - I have a friend who had thyca in 1995 while pregnant (she does not participate in any support groups). Her lump was only 1.5 cm, and she opted not to have any RAI because of her fear of hypo-hell. After watching me have symptom-free experiences with Thyrogen, she was open minded enough to try it. In Sep/01, 6 years after her surgery, she had her very first scan. Over the last 6 years, her TSH-suppressed Tg was undetectable. With Thyrogen, her Tg went up to about 26 and spots were discovered in her lymph nodes on the scan. She will forever be grateful for the invention of Thyrogen and uses it for RAI treatment as well as scanning. If hypo-hell had been her only option, she may never have been willing to go for a scan or elevated-TSH Tg reading. She was under the mistaken impression that an undetectable TSH-suppressed Tg level meant she was " in the clear " . Anyway, sorry this is long, but both my friend and I consider ourselves fortunate to have access to Thyrogen. Each person has to make decisions based on the unique circumstances of their own situation, but we both feel it was the right choice for us. Theresa, London ON, Canada Hashimoto's autoimmune thyroiditis, multinodular goiter Ultrasound guided FNA Biopsy #1–inconclusive, Biopsy #2–suspicious TT, Papillary Thyca – 1.5 cm, follicular variant (Age 32, Sep/00) LID, Thyrogen scan [2 mCi] & Thyrogen Ablation [100 mCi] (Feb/01) LID, Thyrogen scan [6 or 7 mCi] (Nov/01), small remnant remaining Tg tests invalid due to antibodies, TgAB receding, TSH 0.043 (Jun/02) LID, Thyrogen Ablation [100 mCi] (Sep/02), TgAB continues to recede Meds: 200 mcg Eltroxin, 175 mcg Synthroid, alternating Permanent HPTH: 900 mg Calcium Citrate (twice/day) with Rocaltrol (0.5 mcg morning, 0.25 mcg night) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2003 Report Share Posted June 24, 2003 Ok Guys Help: Had my body scan the end of May using the Thyrogen first instead of Hypo Hell. Everything came back OK but I still think there is a lump in my throat. All this talk about false negatives has me really scared that I went the wrong way. Is there a time period that one should wait before asking for another scan. I know it sounds crazy to want to go through it again but I am really getting scared. Not that I want them to find anything I just don't want to live in false euphoria if there is really something there. Not just my imagination as the doctors seem to think it is. My sore throat just will not go away. The other thing I need help with, bread what is the best to eat on LID. Having an awful time finding one, and since the thyroid and having my gall bladder out bread seems to be the one thing I want all the time. Since my weight is also a real problem I'm at a loss. Re: Thyrogen vs Hypo > This may be a silly basic question nbut here it goes. If Thyrogen is > available why do so many of us keep going hypo? It seems like more > doctors are suggesting Thyrogen. Personally I know that my endo, and > the head of the endo dept at the University Of Arizona and I Mayo > all suggest Thyrogen. However as I read our postings I see all of us > going into " Hypo Hell " all the time. What's the deal? > KIM Hi, Kim I asked a similar question a couple of days ago. I've seen on this website that thyrogen is relatively new and has a history of giving false negatives. My own endocrinologist has said that my next scan can be done using thyrogen but I am having doubts. I had my PT and TT in July 2002. My first post-surgery scan showed three spots of thyroid remnant in the neck. At my six month scan in April, those spots were gone and my scan was " clean " but my hypo Tg was 3.8. My endocrinologist feels that I am a candidate for thyrogen but, like I said I am having doubts. I want the most full-proof scanning procedure possible. If there is a chance of a false negative when there really is something going on, I don't want to risk that. OTOH, I don't relish the thought of going hypo again. It really only amounts to three bad weeks, but with three kids to keep up with, it's difficult to be hypo. But again, going hypo is a small price to pay for a more definitive picture of what's going on. Can you tell I'm ambivalent? LOL!! Any advice would be much appreciated. (Thank you, Keira) n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2003 Report Share Posted June 24, 2003 > So far, I'm not impressed with it, and this > is just my first day on the diet. I think it's > easier to be hypo. I've learned over 9 years how to pace > myself and deal with that, and I'm struggling with this > diet and fear I'll eat something I shouldn't and > mess up the scans. The diet done in conjunction with using Thyrogen is exactly the same as the LID done while being hypo. 2 weeks of LID prior to receiving your RAI dose. > That brings up another thing. I hate the scans. > I'm sure the machine is going to crush me. > Now, I find out with the Thyrogen, I have to have 2 scans! This is not typical....only one scan is usually done with Thyrogen. The typical protocol for RAI is to have a Thyrogen injection on Mon., Thyrogen injection on Tues., take the 4mCi RAI dose on Wed., Tg blood draw and scan on Friday. If you go to www.Genzyme.com and download the patient information kit, a printed schedule is included. Marilyn Dx in 1994, papillary w/follicular variant and lung metastases. Positive scans in '94,'95,'96,'97,'98. 435mCi's RAI. Clean scans '99,'00,'02...the last one using Thyrogen. Upcoming scan #9 in July will be using Thyrogen again. Quote Link to comment Share on other sites More sharing options...
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