Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 Hello, Graves disease is an autoimmune disorder. RAI can get rid of the hyperthyroidism, but replaces it with hypothyroidism. It does not address the autoimmune disorder. In fact, it can exacerbate the production of antibodies. Antithyroid drugs lessen the symptoms of hyperthyroidism while reducing antibody production, thus healing the immune system. You can go into remission on ATDs or take a maintenance dose for a lifetime if necessary. My personal experience has been that it was the worst choice I have made in life. You can see pictures of me before and after RAI and read about my experience at the link below. 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 May 3, 2003 Report Share Posted May 3, 2003 What do you mean by " allergic reaction " ? A lot of patients are told by their doctors that they are having an allergic reaction, when actually they are being overdosed. What dose of Tapazole were you taking and for how long? What exactly was your reaction to the Tap? Like others have said, PTU is a totally different drug than Tapazole, and rarely does a patient have reactions to both. I would certainly try that before a permanent treatment option. If your doctor didn't suggest this to you, I would think about an endoectomy before a thyroidectomy or RAI. God bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 Hi, Like , I had RAI and consider it the worst decision I ever made. I personally think a partial thyroidectomy is a better option. But most people who are allergic to one ATD are able to safely tolerate the other. Tapazole and PTU are not chemically similar although they have the same actions. In Graves' disease, the immune system is at fault. The immune system produces antibodies that order thyroid cells to produce excess thyroid hormone. With RAI, you're destroying a perfectly good organ because of an immune system defect. The overactive immune system is stimulated by RAI making the original underlying disorder worse. In my case, I've developed other autoimmune disorders. Keep learning all that you can so that you will feel right about whatever decision you make. I allowed myself to be rushed into treatment and this I regret. Best to you, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 Hi, I can't help much. I am new here. I just had RAI last Tuesday. My Edno gave me 2 choices. RAI or surgery. I am confused and scared about what I did, but it is too late, I did it. My blood test showed TSH 0.01 My True Free T4 is 1.1.....My left side isn't working at all and my right side has 2 nodules that are working overtime. I don't really know what it all means. Like I said I had the test Tuesday. For three days, I wasn't to have any close contact with anyone. I was ok until yesterday. Yesterday, my ears were popping. Today, I had trouble with my eyesight for a short period of time. It was as though I was out in the sun too long and couldn't see good. My eyes were very much dialated. Then when that cleared up, my tongue felt strange. That didn't last long at all. Then my right hand felt numb for about 5 minutes. Right now, I have nothing happening. I don't know if these things are from the iodine or not, but I think it is. Has anyone else had this happen? Thanks Betty PS If your are expecting an answer from me, and you don't get it, please email me back with a friendly reminder. " To err is human; to forgive, divine. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 I am going to be taking radioactive iodine. I can not live with the symptoms of hyperthyroidism any longer. What have been people's experiences with the treatment? Are there still some Grave's symptoms afterwards? Is this a disease of hyperthryoidism or is much more than that? Any responses will be greatly appreciated. --------------------------------- Post your free ad now! Yahoo! Canada Personals Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 Have you tried PTU? Just because you had a reaction to one doesn't mean you will have a reaction to another. Also, people have worked through reactions and ended up being able to successfully take those meds after all IMO surgery is a much better option than RAI. People seem to do better right away with surgery where RAI can take months or years to feel better - if ever. -- Re: Radioactive Iodine I tried Tapazole and had a severe allergic reaction. So ATDs are not a possibility. My endo is very blase about the RAI treatment and seems to believe it is not big deal. I though am quite apprehensive. Is surgery a safer option? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 I tried Tapazole and had a severe allergic reaction. So ATDs are not a possibility. My endo is very blase about the RAI treatment and seems to believe it is not big deal. I though am quite apprehensive. Is surgery a safer option? LISAREYNOLDS64@... wrote:Hello, Graves disease is an autoimmune disorder. RAI can get rid of the hyperthyroidism, but replaces it with hypothyroidism. It does not address the autoimmune disorder. In fact, it can exacerbate the production of antibodies. Antithyroid drugs lessen the symptoms of hyperthyroidism while reducing antibody production, thus healing the immune system. You can go into remission on ATDs or take a maintenance dose for a lifetime if necessary. My personal experience has been that it was the worst choice I have made in life. You can see pictures of me before and after RAI and read about my experience at the link below. 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 May 3, 2003 Report Share Posted May 3, 2003 Hi , I had an allergic reaction to Tapazole also. I have been on PTU for about 3 months now and am doing fine w/ it. If I were you I would go ahead and try PTU if you haven't. My doc told me I couldn't be on PTU w/ out an allergic reaction, but obviously that wasn't true for me. The RAI works for some ppl well, but use that as a very last choice. ~Amber~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 My endo told me that I would not be able to take PTU because of my reaction to Tapazole. By allergic reaction I mean anyphylaxis, for weeks. Excrutiating joint pain and inflamtion, hives all over my body and swelling in face, lips and throat. I was on Prednisone for three weeks due to the fact that antihistamines were no longer working. My endo said that PTU and Tap were similiar in chemistry and that if I had an allergic reaction to Tap I am would than likely have an allergic reaction from PTU. But I am going to request to try PTU due to the fact I do have some eye irritation and do not believe from what I have read that RAI is neccesarilly the right choice. I understand that the thyroid is being assaulted independently and that it is not at fault per se. It is the immune system gone awry, but in light of any treatment to deal with the antibodies, I have to do something because living as I am now is no longer a realistic solution if there is treatment. So I will pursue PTU and continue my Propranolol. Thanks - LISAREYNOLDS64@... wrote:What do you mean by " allergic reaction " ? A lot of patients are told by their doctors that they are having an allergic reaction, when actually they are being overdosed. What dose of Tapazole were you taking and for how long? What exactly was your reaction to the Tap? Like others have said, PTU is a totally different drug than Tapazole, and rarely does a patient have reactions to both. I would certainly try that before a permanent treatment option. If your doctor didn't suggest this to you, I would think about an endoectomy before a thyroidectomy or RAI. God bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 -----BEGIN PGP SIGNED MESSAGE----- Hash: SHA1 andrew seagram wrote: > > My endo said that PTU and Tap were similiar in chemistry and > that if I had an allergic reaction to Tap I am would than likely have > an allergic reaction from PTU. But I am going to request to try PTU > due to the fact I do have some eye irritation and do not believe from > what I have read that RAI is neccesarilly the right choice. The figure of 50% cross sensitivity is bandied around in the literature between PTU and Methimazole based drugs, but I think if you dig into the medical literature you'll find this refers to agranulocytosis and NOT to allergic reaction. Certainly the Merck manual suggests it is okay to try switching if the side effect is allergic in nature but NOT if it agranulocytosis. Obviously if your allergic reaction was very severe the endo may be exercising some judgement, but worth asking him to double check I think. How quickly did your allergic reaction come on, and on what dose? As we get a lot of people with mild rashes on methimazole based drugs, often after a few weeks on the drug, when their dose hasn't been appropriately reduced. And any descriptions of a genuine allergic reaction will help people assess their own experiences better. Somewhere, earlier on, you asked if surgery is safer than RAI, well from what I've read it is, although the risks are different. It doesn't have the significant elevation of eye disease risk, and surgery usually leads to a rapid decrease in TBII (one of the TSH receptor antibodies responsible for the hyperthyroidism). Surgery does carry a slightly higher risk of damage to the parathyroids, and vocal cords, although the risk to the parathyroids isn't much higher than in RAI. It is normal to stabilise people on antithyroid drugs before surgery, and if they aren't available Lugol's solution (or other method based on saturating the thyroid with Iodine), is used. -----BEGIN PGP SIGNATURE----- Comment: Using GnuPG with Mozilla - http://enigmail.mozdev.org iD8DBQE+tC3CGFXfHI9FVgYRAk87AJwKT6klCruRQyYvZL0HIxxO5U7ACACcDmwt KZi1IyvsuyVdZLwPNk2WGJw= =TGC2 -----END PGP SIGNATURE----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 Hi , Tapazole made me break out in hives. Was switched to PTU and on some pretty hefty doses too without any problems! in MA, USA Diagnosed w/Graves, March 1997 Glad I refused RAI Treatment and Surgery!!! On lose dose of PTU Borderline normal thyroid levels Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2003 Report Share Posted May 4, 2003 Hi , and all- Yeah the " allergic reaction " sounds so familiar. . . only it was " really " an overdose. Only difference is my eyes stopped dialating. Yes, yes yes, of course the ego endo told me I could " never take an atd or ptu or the same thing would happen " . (He lied.) Of course that wasn't the case and I started taking small doses of tap in January with no bad side effects - now I feel great. I started on 5mgs a day then slowly ramped up dose to the 20mgs in a month. Looks like T4s/T3s are in normal range. I no longer need propranolol but am keeping a few incase my ramping back down on tap doesn't go as planned. If you are going to do RAI - do it with full knowledge that you will most likely become hypoT, it is more invasive than the atd or ptu and permenent. Keep in mind you will be increasing your risk of hypothyroid disorders and increasing your risk of cancer and blindness. Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 I did RAI last August and so far have had no complaints. I am neither hper nor hypo at this time. My " numbers " have continued to go down very slowly since RAI and I am taking only 25 mg of beta blocker which I will probably discontinue within a month or so. I understand that I may be an exception to the so called rule and that I may not be singing these phrases on down the road but for now I have no regrets as much as folks in this group promised me I would. But I felt that with the choices I had I made the choice that was right for me at the time I made it. For the most part I feel " normal " or in other words I occasionally feel somewhat hyper (usually when I get quite stressed) and sometimes I occasionally hypo - but neither to the degree that I was feeling hyper prior to the RAI. I was so hyper then I could barely function even on 150 mil of PTU and 50 m of beta blocker. I was on PTU for over 3 years and never felt " normal " - just a little less hyper. I do not let anyone let me feel like I made a bad choice for going RAI - even tho I did reject the idea to my drs. for the entire 3 years before having had enough. I can't say that the support groups really assisted me since they are for the most part extremely anti RAI. I generally delete most the messages anymore except the ones like yours and I would like for you to see that someone did go with RAI and is not full of anger that they did. Even if I was not feeling as good as I am I would not advise against it as I do not feel I can tell anyone else what they can expect in the way of success or failure cuz it appears that no 2 people have exactly the same reaction to RAI. I am by no means an expert on this disease - only on my own symptoms am I an expert and even then I sometimes have changed my mind on what I may have at one time thought was definitely not a positive course of treatment. At any rate I cannot at this time say anything negative about RAI except that it is, of course, Radioactive - but I do have much more peace within my raging body and believe me I needed it! Sign me " been there, done that " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 you don't say!? Re: Radioactive Iodine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 I don't see your message---want to know what you have to say. It's blank below. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 I was on PTU for over 3 years and > never felt > " normal " - just a little less hyper. Could be that all that PTU did help in bringing down the antibodies which has helped you have an easier time of it post RAI. Statistically, more people manage well after RAI than don't. The question is, are they settling for less than optimal health and thyroid hormone replacement? Anyone who's looked into the support groups will be better informed than they would have been otherwise, IMHO. > I can't say that the support groups really assisted me Everyone here wishes you the best. Your positive experience is encouraging for anyone who's had RAI, whether they were as well-informed as you were or not. Most people however are not well-informed as to their choices before they make a permanent decision such as RAI. I know I wouldn't have been had I had RAI administered by any of my first 3 endos. I think that we all just want to share the best information we have, which tends to be anti-RAI, or at least pro giving ATDs the best shot possible. (Many people have spent years on ATDs only to find out how poorly they were being monitored and their doses prescribed.) We, or at least I'll speak for myself, I, have also seen people make very well-formed decisions to have RAI only to have difficulty getting their drs. to agree to run appropriate tests or think outside the T4-or-bust box. All this is enough to give anyone pause. Take care and sincerely hoping you stay euthyroid (did you have one of those old-fashioned endos who attempts to callibrate?), 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 May 25, 2003 Report Share Posted May 25, 2003 I don't know if I have an Old Fashioned Dr. or not (he's my 3rd one though) but he is known for ATD;s over a quik RAI diagnosis. I was incorrect in my past dosage which was 300 mil a day not 150. And yes I still disagree with my current dr. on occasion but I live a much more peaceful (inner) life than in the past. When I refer to the group not being of great assistance to me I am refering to the vast majority of negative referrals to RAI and very few if any positive comments about it. I have come to realize that those, myself included, do not feel the need to get on the computer and go on and on about it. Instead I am busy living the life that I have been looking forward to and I really don't spend much if any time looking back on my past med. history. I have always felt that by saying something to this effect on this support group will be met with negativity by those who have had less than rewarding effects from RAI and I don't feel the need to debate it. But when I see someone get on and have questions on RAI and its effects I think they should also hear from the other side of the fence - prior to my doing RAI when I got on this group I only heard negative , negative, negative on RAI. I felt that the best way to deal with my decision was to stop reading the comments on RAI from here.. Since almost a year has passed since I did my RAI and I don't get on very frequently , the few occasions I do it does seem like the negativity has somewhat lessened but it is very infrequest that I see an encouraging word that there is a possibility of life after RAI. I do realize that everyone has a different reaction to RAI - some do great and some do terribly. You cannot possibly know prior how you will come out . As you say you just have to read lots, get on group support lines, and ask anyone and everyone who may have a similar diagnosis what they did and how they did with their decision - but know that you may not have the same reaction as them. If I had made my decision just from what I had read from support grouip reactions I never would have done it as I never heard an encouraging word from anyone about it. Again I think this is because those who did RAI and are doing OK don't feel a need to " crow " about it - instead they are busy getting on with life, etc. Even as I took ATD's they did indeed reduce the symptoms - just didn't reduce them enough for me to feel " normal " whatever that is, but I know from being hyper all those years what it isn't! To finally get me to feel fairly normal took more of a dosage of ATD's than my body could deal with as I started having alleragic reactions to the meds. and by reducing the meds my allergic reactions subsided but my hyperness increased. and yes, I did try different ATD's to see if the allergic reactions would not develop with other meds.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 Point taken. Just want to say though, that I think the responses have been fair and open minded. For me, RAI is so final that I just want to encourage people to slow down and really think it through. Although many RAI patients are ok with their decision, the price if it goes wrong is very high and should be weighed seriously. I believe that's why people on this board try to share information and counsel about RAI, because the consequences can be so serious. My sister chose RAI, and I chose ATDs. I am now in remission, and she has to work at keeping her levels balanced, sometimes it is hellish. I also saw the consequences of my mother's thyroidectomy. My caution is from personal experience. Also, I feel that some people come on this board to find information and support with Graves, and some others make a special effort to stay on the boards to provide that support. It is not because they are not going about their lives, it is because they want to be of service, and I really appreciate that, it was invaluable help for me. Regards, I have come to realize that those, myself included, do not feel the need to get on the computer and go on and on about it. Instead I am busy living the life that I have been looking forward to and I really don't spend much if any time looking back on my past med. history. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 Hi Catfish- What alarms me is that the doctors told me that since my TSH was normal and I was fine (it has since been proven that a TSH like I had is hypothyroid). I knew I wasn't fine. So, I was diagnosed with depression, chronic fatigue syndrome and fibromyalgia. It took 11 years to figure out what was wrong. So, frankly, I don't trust it when anyone says they're fine post-RAI unless they don't have any other problems and haven't had any for many years. Many RAI patients are young as I was. In all the years I've been doing this, I haven't seen one person say that. And you'd think there'd be one person that tries to help others considering how life-altering this disease can be. As a biologist, I think that we can be treated post-RAI better than we were before. But it's not as good as having a functioning thyroid gland. There is no way that exogenous thyroid hormone can make up for the daily stresses and energy we need that an intact thyroid can. My 2 cents as one that has been there and done that. Take care, dx & RAI 1987 (at age 24) > I don't know if I have an Old Fashioned Dr. or not (he's my 3rd one though) > but he is known for ATD;s over a quik RAI diagnosis. > I was incorrect in my past dosage which was 300 mil a day not 150. > And yes I still disagree with my current dr. on occasion but I live a much > more peaceful (inner) life than in the past. > When I refer to the group not being of great assistance to me I am refering > to the vast majority of negative referrals to RAI and very few if any positive > comments about it. I have come to realize that those, myself included, do not > feel the need to get on the computer and go on and on about it. Instead I am > busy living the life that I have been looking forward to and I really don't > spend much if any time looking back on my past med. history. I have always > felt that by saying something to this effect on this support group will be met > with negativity by those who have had less than rewarding effects from RAI and I > don't feel the need to debate it. But when I see someone get on and have > questions on RAI and its effects I think they should also hear from the other > side of the fence - > prior to my doing RAI when I got on this group I only heard negative , > negative, > negative on RAI. I felt that the best way to deal with my decision was to > stop > reading the comments on RAI from here.. Since almost a year has passed since > I > did my RAI and I don't get on very frequently , the few occasions I do it > does seem like the negativity has somewhat lessened but it is very infrequest > that I see an encouraging word that there is a possibility of life after RAI. > I do realize that everyone has a different reaction to RAI - some do great > and some do terribly. You cannot possibly know prior how you will come out . > As you say you just have to read lots, get on group support lines, and ask > anyone and everyone who may have a similar diagnosis what they did and how they > did with their decision - but know that you may not have the same reaction as > them. > If I had made my decision just from what I had read from support grouip > reactions I never would have done it as I never heard an encouraging word from > anyone about it. Again I think this is because those who did RAI and are doing > OK don't feel a need to " crow " about it - instead they are busy getting on > with life, etc. > > Even as I took ATD's they did indeed reduce the symptoms - just didn't reduce > them enough for me to feel " normal " whatever that is, but I know from being > hyper all those years what it isn't! To finally get me to feel fairly normal > took more of a dosage of ATD's than my body could deal with as I started having > alleragic reactions to the meds. and by reducing the meds my allergic > reactions subsided but my hyperness increased. and yes, I did try different ATD's > to see if the allergic reactions would not develop with other meds.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2003 Report Share Posted May 26, 2003 In a message dated 5/25/2003 3:59:25 PM Eastern Daylight Time, shen@... writes: > Also, I feel that some people come on this board to find information > and support with Graves, and some others make a special effort to stay > on the boards to provide that support. It is not because they are not > going about their lives, it is because they want to be of service, and > I really appreciate that, it was invaluable help for me. > , Thank you for making that observation! God bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Hello Rose, Radioactive iodine was the worst mistake of my life. You can read my story and see the pics of me before and after RAI at the link below. (While you are at Mediboard reading my story, please check out the thread called THYROID AWARENESS 101...lots of good info for the newly diagnosed.) 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 October 9, 2003 Report Share Posted October 9, 2003 Rose, Here is a hypothetical RAI scenario that I wrote at Mediboard recently: Betty, and have all been diagnosed with Graves Disease. They are at the hospital in the Radiology Department waiting room. The Nuclear Medicine doctor takes them all into his office and says: " Here's the good news. Two of you will have no problems after taking RAI, except for permanent hypothyroidism and a lifetime of thyroid hormone replacement. However, one of you will have a serious decrease in quality of life. The problems could include, but are not limited to: -thyroid storm -thyroid eye disease -pretibial myxedema -T4 to T3 conversion problems -obesity -heart disease -fertility problems -damage to salivary, gastric, parathyroid and pituitary glands -cancer of the thyroid or small bowel -calcium deficiency which will result in ostoeporosis and/or broken bones -malabsorption of nutrients -gluten intolerance The biggest problem may be finding a doctor who will properly treat your hypothyroidism and not leave you floundering in a hypothyroid state for years to come. The list goes on, but we have to get moving as the shipment of RAI just arrived and we need to get it out of here. But first, the bad news. At this time, we have no solid criteria to predetermine which one of you will be the one who will have these problems. Ok, ladies, who would like to go first? " Read all you can........ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 On Thu, 09 Oct 2003 21:38:46 -0000 " ROSE " writes: > > Hi, could someone help me my Dr. just called me after about > > 4 weeks and told me my blood work was high I think he said. Never good enough to base a decision - you need hard numbers. > > And he said about acouple of things to do but the one he highly > recamends is Radiactive iodne, > > I asked him if he could send a memo to my Family Dr. > > so he is going to do so. > > but what do you lady thin about Radiactive iodne. Not much ;-) Take a look at the Top 20+ reasons not to have RAI on the homepage. Besides that is something that you may not know your dr. well enough to assess - how he manages patients who are hypOthyroid, which is what RAI causes. If you think using anti-thyroid drugs is complicated, that's nothing compared to life-time use of thyroid replacement hormone. 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...
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