Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 Hi Laurie, Your post really disturbs me. From your questions you have NOT researched well before deciding on RAI. You need to do a lot more homework before you allow your thyroid to be killed by radiation. Of course you can't be around the baby afterwards! I'm simply too wiped out tired this evening to address this other than to suggest you read the 'top 20 reasons not to have RAI' on the home page, but I know there are plenty of other people here who will chime in. There have been a lot of recent newbies of the " my doctor rushed me into RAI and now I'm miserable, my eyes are bulging, I'm gaining weight like mad, have no energy, feel TERRIBLE, when will it get better " variety. So you might want to check the archives as well. Terry > > Reply-To: graves_support > Date: Fri, 01 Aug 2003 02:37:54 -0000 > To: graves_support > Subject: thyroid uptake test > > Hello all, > Just wondering what to expect in the next couple of weeks. I have > to go for a thyroid uptake test next week and after the results of > that I am going for RAI. I didn't think I could have the RAI > treatment but the Endo assures me that my allergy to iodine will not > effect me in any way. My Endo is wonderful by the way. So down to > earth and he explained Graves Disease wonderfully. He said my > thyroid was like the gas pedal of my body and it is stuck on wide > open, and he needs to make it hit a tree just like a car would do if > it's gas pedal were stuck open. He's a great guy. > I do have one more Question. Should I be around my baby after I > have the RAI treatment? He told me to ask the opinion of others and > he leaves it up to me. I wouldn't think that radiation in that > amount would be good for him. Any help and thoughts would be > appreciated. > Thanks to you all!! > Laurie > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not > intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > ------------------------------------------------------------------------------ > -------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 Laurie, WHOA!!!! Before you do ANYTHING, you absolutely must do your homework. I'm sure your endo is a nice guy (so is my GP, who also advised me to go for RAI), but will that really matter if you regret making one of the most important decisions in your life?? It is YOUR body, and YOU will have to live with the results. RAI is permanent, and no turning back. It may not be your first option after you do your reading. Thanks to the information I have found on the Web, and in particular from good folks at Atomic Women, Graves' Support, and Mediboard, I have decided that I will never do RAI; I am on medication (PTU), and if I ever need to do anything permanent, I will opt for surgery (which will only be a last resort). Please go to Mediboard.com for the Graves Discussion group. There is a thread called Thyroid Awareness 101; I think you can get to it here: http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=004549 There are many more threads to read at Mediboard, and you can post there as well. If you go to Atomic Women Yahoo Group (please do), you may want to read what the members told me about a month and a half ago, when I was first diagnosed. That may save everyone from having to repeat themselves ;-) My posts start at number 926, dated 6/16/03. I thank G-d (and those who helped get me up to speed) that I only had the uptake scan (RAIU) done, and narrowly escaped RAI; I would not even have the scan done if I knew then what I know now. At 10:37 PM 7/31/2003, you wrote: >Hello all, > Just wondering what to expect in the next couple of weeks. I have >to go for a thyroid uptake test next week and after the results of >that I am going for RAI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 Laurie, Me again. Thinking about your doctor's analogy... Rather than slamming into a tree, wouldn't it be more prudent to apply the brake and turn the ignition off? Slamming into a tree would not be my first choice -- ouch. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 Hi Laurie, I'm sorry, I am pooped too. It is hot and icky here. I am between jobs right now, so I shall try to at least get you started learning a little more. We all know how confusing this is right now, and it is really hard to learn as much as you need to right now, because the hyper makes our brain HYPER. We were all like that in the beginning and confused. Heck, before Graves' , I did not even know where my thyroid was. The reason we are worried about you is that there are three choices of treatment, and it seems you are being given the bums rush here. RAI is the cheapest treatment. Before you make a choice that will affect every cell in your body, for the rest of your life.... it is very sensible to take anti thyroid drugs at least in the beginning. That way your body and mind can return to normal faster, AND you have time to learn everything you really NEED to know. First of all... it bothers me that you do NOT have a definite diagnosis yet. There are several reasons your thyroid numbers can be high. And Graves' is only one of them. IF it is post partum thyroiditis that goes away in time. If it is cancer you would have a stump in your neck full of cancer and treatment would be delayed for who knows how long? IF & it is multi nodular goiter the RAI can then cause Graves', which is an auto immune disease. IF it is Graves' , the antibodies are the problem and your thyroid is the innocent victim. RAI increases the antibodies which could go on to cause other problems. RAI has a 30% chance of causing obesity...which then causes MANY other problems. RAI increases the chances and severity of the eye disease. The anti thyroid drugs are the only treatment that gets rid of the antibodies. With a doctor that is accustomed to using the drugs, we then are properly monitored, and in time enter remission. This IS slightly more expensive in the FIRST year. If you are planning on more children, RAI is never used in any other country than ours. THEY understand the danger to the future children and also the possibility of fertility problems . Now... I really AM late. Gosh... I just hate to see young gals like you treated like you are not capable of learning and understanding ALL of this. That story about the car and the gas petal is fit for a small child to understand. :-( I know that is why Terry was so offended. As will be many more of us. Here is a good accurate site with information for a grownup. http://www.suite101.com/articles.cfm/9630/1-20 Oh... and please take care out here on the Web. Be sure you can SEE links and information, not just opinions only. Any other questions, please do ask. It is slow right now during the summer, but there are always at least a few of us around sooner or later. -Pam L - 3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU (despite an incompetent endo ! ), improved lifestyle, excellent nutrition, herbs, and looking at the big picture. Pills alone only help the symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 Hey , I nominate you as our official meeter and greeter. I'm afraid some of us old timers get more upset after the damage we have watched done to these young women over the years, and I know your post was much nicer than my 'cancer stump'. It's just a fact, and they are never told The obesity percentages alone would scare me. Much less eye problems. Yes... lots of people may be just fine after RAI. My real life friends are not... but the happy ones must be out there. It is the huge risk that just does not make sense anymore. Back in the old days, they did not know about the fact that this is autoimmune, or about the antibodies. The antibody tests have only been around for 15 years. But this is 2003! We know better now, and the doctors are still set in their old ways. I LOVED this: *** Thinking about your doctor's analogy... Rather than slamming into a tree, wouldn't it be more prudent to apply the brake and turn the ignition off? Slamming into a tree would not be my first choice -- ouch. *** A much better greeting. :-) -Pam L- 3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU (despite an incompetent endo ! ), improved lifestyle, excellent nutrition, herbs, and looking at the big picture. Pills alone only help the symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 Hey , I nominate you as our official meeter and greeter. I'm afraid some of us old timers get more upset after the damage we have watched done to these young women over the years, and I know your post was much nicer than my 'cancer stump'. It's just a fact, and they are never told The obesity percentages alone would scare me. Much less eye problems. Yes... lots of people may be just fine after RAI. My real life friends are not... but the happy ones must be out there. It is the huge risk that just does not make sense anymore. Back in the old days, they did not know about the fact that this is autoimmune, or about the antibodies. The antibody tests have only been around for 15 years. But this is 2003! We know better now, and the doctors are still set in their old ways. I LOVED this: *** Thinking about your doctor's analogy... Rather than slamming into a tree, wouldn't it be more prudent to apply the brake and turn the ignition off? Slamming into a tree would not be my first choice -- ouch. *** A much better greeting. :-) -Pam L- 3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU (despite an incompetent endo ! ), improved lifestyle, excellent nutrition, herbs, and looking at the big picture. Pills alone only help the symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 Pam, Your post was just fine. The truth must be told. Teamwork, as you say. It's late (almost 2am), so I'll be turning in now. At 01:04 AM 8/1/2003, you wrote: >Hey , > >I nominate you as our official meeter and greeter. > >I'm afraid some of us old timers get more upset after the damage we have >watched done to these young women over the years, and I know your post was >much nicer than my 'cancer stump'. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2003 Report Share Posted July 31, 2003 Pam, Your post was just fine. The truth must be told. Teamwork, as you say. It's late (almost 2am), so I'll be turning in now. At 01:04 AM 8/1/2003, you wrote: >Hey , > >I nominate you as our official meeter and greeter. > >I'm afraid some of us old timers get more upset after the damage we have >watched done to these young women over the years, and I know your post was >much nicer than my 'cancer stump'. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 Hi lauri, Did your indo do blood test before recommending the uptake scan. I was diagnosed last september. My indo and I didn't discuss treatment options until she was absolutely sure. This was gathered from a variety of lab tests, and the uptake scan. I think that was a good approach. I agree, be sure to research your options. My indo told me that ri kill my thyroid, but that wasn't all that caused graves, and that I would be on thyroid replacement hormones for the rest of my life. She also explained, and so did some other friends, that I would have to be away from people for a short time. A friend also told me that protective gear is worn when they give this treatment too you. The ri treatment is stronger than the uptake test. I'm glad that my indo made sure that her diagnosis was correct, because it had been missed for years. Hope that this helps you. Its a good thing that you found this list. Finally, I chose the medication route. I have been off meds for nearly two months now. My indo is very happy. She told me that the approach that I chose would have been her recommendation. But that it had to be my choice. Good luck too you. Keep us posted on things. Graves can be overwelming at first. But you are in the right place. You may write me privately if you like. Take care. R. Green ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 Hi lauri, Did your indo do blood test before recommending the uptake scan. I was diagnosed last september. My indo and I didn't discuss treatment options until she was absolutely sure. This was gathered from a variety of lab tests, and the uptake scan. I think that was a good approach. I agree, be sure to research your options. My indo told me that ri kill my thyroid, but that wasn't all that caused graves, and that I would be on thyroid replacement hormones for the rest of my life. She also explained, and so did some other friends, that I would have to be away from people for a short time. A friend also told me that protective gear is worn when they give this treatment too you. The ri treatment is stronger than the uptake test. I'm glad that my indo made sure that her diagnosis was correct, because it had been missed for years. Hope that this helps you. Its a good thing that you found this list. Finally, I chose the medication route. I have been off meds for nearly two months now. My indo is very happy. She told me that the approach that I chose would have been her recommendation. But that it had to be my choice. Good luck too you. Keep us posted on things. Graves can be overwelming at first. But you are in the right place. You may write me privately if you like. Take care. R. Green ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 Hi Laurie- I would question any doctor that asks the opinions of others before prescribing you a course of treatment. You shouldn't be close to your baby for a while because you don't want to jeopardize his thyroid because of your treatment. I've regretted RAI every day of my life since I've had it. I've had nothing but multiple problems and infertility since. Some people choose RAI willingly. I would not have as a young woman. I was under the impression that I had no other choice. I also like my endo. But he thinks that RAI is OK in young women if ATDs don't work. However, he doesn't ever have to live with this choice. And he hasn't seen his own personality change because he's too tired to do anything anymore. And he hasn't had to deal with infertility and then the consequences of fertility treatments. And now that the fertility treatments did work, he doesn't have to deal with the fallout and the fact that we're older parents after years of trying (I'm the culprit). You have to think this out carefully. Take care, dx & RAI 1987 (at age 24) > Hello all, > Just wondering what to expect in the next couple of weeks. I have > to go for a thyroid uptake test next week and after the results of > that I am going for RAI. I didn't think I could have the RAI > treatment but the Endo assures me that my allergy to iodine will not > effect me in any way. My Endo is wonderful by the way. So down to > earth and he explained Graves Disease wonderfully. He said my > thyroid was like the gas pedal of my body and it is stuck on wide > open, and he needs to make it hit a tree just like a car would do if > it's gas pedal were stuck open. He's a great guy. > I do have one more Question. Should I be around my baby after I > have the RAI treatment? He told me to ask the opinion of others and > he leaves it up to me. I wouldn't think that radiation in that > amount would be good for him. Any help and thoughts would be > appreciated. > Thanks to you all!! > Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 I guess this guy isn't so bad since he did suggest you to consult others. What's he going to do when you don't take his advice? Take care, dx & RAI 1987 (at age 24) > Hi Laurie- > > I would question any doctor that asks the opinions of others before > prescribing you a course of treatment. You shouldn't be close to your baby > for a while because you don't want to jeopardize his thyroid because of your > treatment. > > I've regretted RAI every day of my life since I've had it. I've had nothing > but multiple problems and infertility since. > > Some people choose RAI willingly. I would not have as a young woman. I was > under the impression that I had no other choice. > > I also like my endo. But he thinks that RAI is OK in young women if ATDs > don't work. However, he doesn't ever have to live with this choice. And he > hasn't seen his own personality change because he's too tired to do anything > anymore. And he hasn't had to deal with infertility and then the > consequences of fertility treatments. And now that the fertility treatments > did work, he doesn't have to deal with the fallout and the fact that we're > older parents after years of trying (I'm the culprit). > > You have to think this out carefully. > > Take care, > > > dx & RAI 1987 (at age 24) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 Welcome to our group, Laurie: Please try not to be overwhelmed by all of the good information and advice that has already been written to you. And you haven't even had many people who have undergone RAI write to you yet, and those are the people who suffered the most by the *old fashioned protocol to slow down the thyroid by Zapping the thyroid with radiation " . (It is never necessary...other options should be explored first. When I was diagnosed, it was because I went to my doctor due to my eyes bulging, one eye cross eyed and my heart was racing. My doc told me " the same story you heard...about the racing thyroid that MUST be calmed down with RAI and the sooner the better. He also told me that " you take just one RAI pill and then a few weeks later we give you just one little thyroid replacemtn pill and you end up being fine and probably only have to get blood tests once a year " . Thank God and everyone I met that I told him " no...no radiation " . My doctor only then told me that there are other options, and that " some people are given an anti- thyroid medication and eventually over a year to five years they are just fine and they don't need the medication anymore. I asked him why he didn't tell me about the other option first...and his response was " the medical profession finds that it is faster and 'easier' to just give the patient RAI " . Eaiser? Yes, easier for the doctor. But NOT easier for the patient. I have been taking PTU (one of the anti- thyroid drugs) for 27 months. I started at a quite high dosage. I'm now down to a small dosage. My heart racing feeling went away within a month of starting the PTU, the eye bulging is about 80% gone and I have just a little double vision at times but it is totally manageable. **The best approach (in my opinion) is to NEVER allow any doctor (great guy or specialist who whoever) to eradiate your body as the first choice.** You can go back to your Endo and say you want to take anti-thyroid medicatioin & then give that some time before even considering RAI. ((Besides, having part of the thyroid surgically removed is safer than taking RAI.)) If you take the RAI, you won't be able to touch your baby or anyone for a number of days. Not sure...between 3 to 10 days, I think. If you *wait* and not do anything drastic, you will be given anti-thyroid drugs (either PTU or Tepazole). Take the medication every 8 hours as instruced...and you will very soon begin to feel calmed down. As for the 'allergic to iodine', that refers to all of us...meaning anyone with Graves disease needs to " reduce their consumption of iodine " . That's all it means. (And RAI will not take care of that anyone.) And one more thing...I have gone to a number of doctors...including one EXPERT who has written a lot of books on thyroid, and he didn't even know that Graves is a disease that is (a) an autoimmune disease, and ( that the thyroid is secondary, in that the auto immune activity directs the pituitary gland to signal the thyroid to produce lots and lots more thyroid stimulating hormone than the body needs. Wow...I wrote a lot. My advice, (a) you have to do what is right for you, ( know that you can stand up to any doctor and say that you don't want RAI at least right now, and © take your time...many, many months before you even consider anything as DRASTIC as having your thyroid Eradiated or having it surgically removed. The anti-thyroid drugs work. Sometimes you'll also need a beta blocker (just to help slow the body down or keep the blood pressure down). Please feel free and encouraged to write back to the entire list or to anyone who has responded to your posting. And know that you were given the same phony reasoning that most of us heard from doctors. (And, some docs really don't know anything other than RAI....but an Endo should be VERY familiar with treating a patient with PTU or Tepazole, the 2 most widely used anti-thyroid drugs. All the best & please take care. Ron > Hello all, > Just wondering what to expect in the next couple of weeks. I have > to go for a thyroid uptake test next week and after the results of > that I am going for RAI. I didn't think I could have the RAI > treatment but the Endo assures me that my allergy to iodine will not > effect me in any way. My Endo is wonderful by the way. So down to > earth and he explained Graves Disease wonderfully. He said my > thyroid was like the gas pedal of my body and it is stuck on wide > open, and he needs to make it hit a tree just like a car would do if > it's gas pedal were stuck open. He's a great guy. > I do have one more Question. Should I be around my baby after I > have the RAI treatment? He told me to ask the opinion of others and > he leaves it up to me. I wouldn't think that radiation in that > amount would be good for him. Any help and thoughts would be > appreciated. > Thanks to you all!! > Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 Welcome to our group, Laurie: Please try not to be overwhelmed by all of the good information and advice that has already been written to you. And you haven't even had many people who have undergone RAI write to you yet, and those are the people who suffered the most by the *old fashioned protocol to slow down the thyroid by Zapping the thyroid with radiation " . (It is never necessary...other options should be explored first. When I was diagnosed, it was because I went to my doctor due to my eyes bulging, one eye cross eyed and my heart was racing. My doc told me " the same story you heard...about the racing thyroid that MUST be calmed down with RAI and the sooner the better. He also told me that " you take just one RAI pill and then a few weeks later we give you just one little thyroid replacemtn pill and you end up being fine and probably only have to get blood tests once a year " . Thank God and everyone I met that I told him " no...no radiation " . My doctor only then told me that there are other options, and that " some people are given an anti- thyroid medication and eventually over a year to five years they are just fine and they don't need the medication anymore. I asked him why he didn't tell me about the other option first...and his response was " the medical profession finds that it is faster and 'easier' to just give the patient RAI " . Eaiser? Yes, easier for the doctor. But NOT easier for the patient. I have been taking PTU (one of the anti- thyroid drugs) for 27 months. I started at a quite high dosage. I'm now down to a small dosage. My heart racing feeling went away within a month of starting the PTU, the eye bulging is about 80% gone and I have just a little double vision at times but it is totally manageable. **The best approach (in my opinion) is to NEVER allow any doctor (great guy or specialist who whoever) to eradiate your body as the first choice.** You can go back to your Endo and say you want to take anti-thyroid medicatioin & then give that some time before even considering RAI. ((Besides, having part of the thyroid surgically removed is safer than taking RAI.)) If you take the RAI, you won't be able to touch your baby or anyone for a number of days. Not sure...between 3 to 10 days, I think. If you *wait* and not do anything drastic, you will be given anti-thyroid drugs (either PTU or Tepazole). Take the medication every 8 hours as instruced...and you will very soon begin to feel calmed down. As for the 'allergic to iodine', that refers to all of us...meaning anyone with Graves disease needs to " reduce their consumption of iodine " . That's all it means. (And RAI will not take care of that anyone.) And one more thing...I have gone to a number of doctors...including one EXPERT who has written a lot of books on thyroid, and he didn't even know that Graves is a disease that is (a) an autoimmune disease, and ( that the thyroid is secondary, in that the auto immune activity directs the pituitary gland to signal the thyroid to produce lots and lots more thyroid stimulating hormone than the body needs. Wow...I wrote a lot. My advice, (a) you have to do what is right for you, ( know that you can stand up to any doctor and say that you don't want RAI at least right now, and © take your time...many, many months before you even consider anything as DRASTIC as having your thyroid Eradiated or having it surgically removed. The anti-thyroid drugs work. Sometimes you'll also need a beta blocker (just to help slow the body down or keep the blood pressure down). Please feel free and encouraged to write back to the entire list or to anyone who has responded to your posting. And know that you were given the same phony reasoning that most of us heard from doctors. (And, some docs really don't know anything other than RAI....but an Endo should be VERY familiar with treating a patient with PTU or Tepazole, the 2 most widely used anti-thyroid drugs. All the best & please take care. Ron > Hello all, > Just wondering what to expect in the next couple of weeks. I have > to go for a thyroid uptake test next week and after the results of > that I am going for RAI. I didn't think I could have the RAI > treatment but the Endo assures me that my allergy to iodine will not > effect me in any way. My Endo is wonderful by the way. So down to > earth and he explained Graves Disease wonderfully. He said my > thyroid was like the gas pedal of my body and it is stuck on wide > open, and he needs to make it hit a tree just like a car would do if > it's gas pedal were stuck open. He's a great guy. > I do have one more Question. Should I be around my baby after I > have the RAI treatment? He told me to ask the opinion of others and > he leaves it up to me. I wouldn't think that radiation in that > amount would be good for him. Any help and thoughts would be > appreciated. > Thanks to you all!! > Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 In a message dated 8/1/2003 10:35:24 AM Eastern Daylight Time, dolphinsaremylove@... writes: > I forgot to tell everyone that I was on meds and they didn't work. My TSH > is still undetectable. The Endo took me off of the meds because they aren't > working. Whoa! Time for an endo who knows how to treat someone on ATD's. You shoud be monitored on you FreeT3 and FreeT4, not the TSH. The TSI antibodies found in GD will mimic TSH, causing the pituitary to produce less TSH for weeks or months, giving you a low TSH test result! Please read this article on the subject by author Elaine ...actually you will want to read all of these articles! <A HREF= " http://www.suite101.com/article.cfm/graves_disease/100906 " >http://www.suit\ e101.com/article.cfm/graves_disease/100906</A> God bless, <A HREF= " http://hometown.aol.com/lisareynolds64/myhomepage/personal.html " >http://ho\ metown.aol.com/lisareynolds64/myhomepage/personal.html</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 Hi Laurie, You will be emitting radioiodine for at least 8 weeks. It's generally recommended that you not hold or touch babies for 1-3 weeks, but 8 weeks is ideal. It's too bad that your doctor didn't explain why your thryoid is overactive. Graves' disease is an autoimmune disorder that often occurs in the postpartum period. It can be safely treated with medicines that reduce your thryoid hormone levels and help your immune system heal. With this approach you achieve remission. RAI is by far the cheapest treatment for Graves' disease, and it is often recommended first. I had RAI and have regretted it since. Please study your options carefully before rushing into anything. Please visit my web site at http://daisyelaine_co.tripod.com/gravesdisease/ Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 Hey Ron (or anyone else who has an opinion on this), All this talk of the RAIU scan kicked up my concern again about having gotten that damn scan!! I am still angry about it. They said " just drink this, it's completely harmless. " Later, when Dr. Nuclear was itching to nuke me, he said " your thyroid will not survive this disease. " That had me wondering if the RAIU scan did any damage. From the report, it looks like 131 was given, though I'm sure it wasn't the full RAI blast. He was actually expecting to see a low uptake (suspected " silent thyroiditis " ), and I don't think he was intending to give the RAI at the time he administered the scan (he thought my thyroiditis would resolve by itself, if the uptake was low -- but it was normal. The other doc did the TSI test, which was positive). The scan was done on May 12th. I have heard that the radioactive material passes through quickly, and does not cause damage (of course best not to have it at all, but since I already did...), but wanted to check in and see what you think. Do you think the scan does damage, and for how long? I hear people can take up to 10 years to go hypO from RAI, and wondered about the same with the damn scan :-( Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 Laurie, How long were you on the meds, and at what dosage? Were your FT3 and FT4 showing a response? TSH can lag behind for weeks, months or years, and maybe you haven't been given a fair chance. You wouldn't be the first one... At 10:30 AM 8/1/2003, you wrote: >I forgot to tell everyone that I was on meds and they didn't work. My TSH >is still undetectable. The Endo took me off of the meds because they >aren't working. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 On Fri, 1 Aug 2003 07:30:51 -0700 (PDT) Laurie Cornelius writes: > I forgot to tell everyone that I was on meds and they didn't work. > My TSH is still undetectable. The Endo took me off of the meds > because they aren't working. i don't want the RAI, I would rather > go with the surgery. I have done my research on surgery because > that is what I would prefer. I have a friend who has graves, and > who had the RAI. I guess she is one of the lucky ones and had no > side effects. I'm just not sure what to do here. Laurie, could you give us more details? Again, please look up my post on ATDs or let me know off list and I'll send it to you directly. So many times people are told they didn't work when they weren't given a fair trial on them. That your TSH is undetectable is NOT conclusive. Have your free T4 and T3 moved at all? Did he set an arbitrary date to take you off ATDs? Were your doses changed gradually or drastically? What did you start at and on what ATD? And, last (for now) what dose were you on when you stopped? Sorry to give you the third degree but sometimes I feel like a detective ;-) Take care, Fay ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 Hi Laurie, There are tons of reasons why I would never choose RAI as my treatment option - most of them have been listed by others already - and I'm glad I didn't since I'm in remission now after a year of alt med treatments - but one thing that concerns me the most about your post is that you have a little one at home that needs lots of love and hugs and close contact. There was no way I could even consider staying away from my 2 year old for 2-4 weeks while radiation leached out of my cells. You know (or probably you don't yet) that when a cat has hyperthyroidism and they nuke it's thyroid they keep the cat quarantined at the vets for 2-6 weeks until the cat's radiation is measured to be safe to be around it's family again. And a cat gets much less RAI than humans do. It's too bad they don't measure people to see when it's safe for them to be around people again, but I suspect they are in a hurry to get them out of the hospital before they become a risk to the people there. I'm really surprised at your doc for even suggesting that it might be safe to be around your child after RAI. And I'm really suspect that he couldn't give you the guidelines posted by others here about what to do and not to do after RAI. He may be a nice guy, but that doesn't make him a great doc by any means. Good luck with your decision, and I hope you do a bit more research before agreeing to such a permanent one. Pam B. diagnosed Dec. 2001, began alt med treatment April 2002, off all herbs/meds March 2003, feeling really great. http://www.webmosaics.com/thyroid/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 Hi Laurie- Sorry we're bombarding you but we tend to do that with people that haven't made a permanent choice yet but have been counseled by their doctors to do it. Too many doctors don't try all that hard to get their patients euthyroid before they push them into RAI. Fully 33% of patients don't do well after RAI and most endos know that. However, if the patient's thyroid levels and TSH falls into the normal range the doctor tells them that something else is the problem. There is a big normal range for thyroid hormone though (and what's normal for one person isn't normal for another) and thyroid hormone is required for metabolism by every cell in the body (humans and other mammals). As a biologist, I don't understand why they think that it wouldn't be a problem if it's not exactly right. We no longer can regulate what we need once our thyroid is gone. We have to rely on a once/year thyroid test and a physician to tell us we're OK. Well! I was never OK and found out many years later that I had a problem despite being told that everything was fine. One other thing. Replacement thyroid hormone is inherently unstable. It's affected by heat, light, air and humidity. It's made in huge batches where it's difficult to control consistency. And there's some question that the FDA cannot pickup some clinically relevant changes in manufacturing conditions or in the physiochemical aspects of the drug. Considering this, I don't understand why doctors are so willing to irradiate the thyroid. If your endo wants to look this up, he can. It's in The Medical Letter, Vol. 43, July 9, 2001. That article was a spin-off from other work. He can research it further if he's interested. Take care, > I forgot to tell everyone that I was on meds and they didn't work. My TSH is still undetectable. The Endo took me off of the meds because they aren't working. i don't want the RAI, I would rather go with the surgery. I have done my research on surgery because that is what I would prefer. I have a friend who has graves, and who had the RAI. I guess she is one of the lucky ones and had no side effects. I'm just not sure what to do here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2003 Report Share Posted August 1, 2003 Hi Laurie- Sorry we're bombarding you but we tend to do that with people that haven't made a permanent choice yet but have been counseled by their doctors to do it. Too many doctors don't try all that hard to get their patients euthyroid before they push them into RAI. Fully 33% of patients don't do well after RAI and most endos know that. However, if the patient's thyroid levels and TSH falls into the normal range the doctor tells them that something else is the problem. There is a big normal range for thyroid hormone though (and what's normal for one person isn't normal for another) and thyroid hormone is required for metabolism by every cell in the body (humans and other mammals). As a biologist, I don't understand why they think that it wouldn't be a problem if it's not exactly right. We no longer can regulate what we need once our thyroid is gone. We have to rely on a once/year thyroid test and a physician to tell us we're OK. Well! I was never OK and found out many years later that I had a problem despite being told that everything was fine. One other thing. Replacement thyroid hormone is inherently unstable. It's affected by heat, light, air and humidity. It's made in huge batches where it's difficult to control consistency. And there's some question that the FDA cannot pickup some clinically relevant changes in manufacturing conditions or in the physiochemical aspects of the drug. Considering this, I don't understand why doctors are so willing to irradiate the thyroid. If your endo wants to look this up, he can. It's in The Medical Letter, Vol. 43, July 9, 2001. That article was a spin-off from other work. He can research it further if he's interested. Take care, > I forgot to tell everyone that I was on meds and they didn't work. My TSH is still undetectable. The Endo took me off of the meds because they aren't working. i don't want the RAI, I would rather go with the surgery. I have done my research on surgery because that is what I would prefer. I have a friend who has graves, and who had the RAI. I guess she is one of the lucky ones and had no side effects. I'm just not sure what to do here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2003 Report Share Posted August 3, 2003 Hi, My indo is located in fort collins colorado. I'm pretty pleased with her. She comes across cold. Bbut then a caring side comes out, which she tries very hard to contain. R. Green ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
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