Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Hi Amy J! That was an uplifting post! Thanks for sharing that. Of course it is important to ME (not trying to sound selfish) that there is light at the end of the RAI tunnel. Like I said, I DO believe Joe is going to be " fine " (he's been hypnotizing me with his famous saying I think) because he is who he is and will conquer this or ... well, die. That's his M.O. not mine! I hope you are able to get pregnant soon! I wish you all the happiness in the world and much success with your post RAI treatments. It is a big challenge, but you sound up for it. All of my very, very best, Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 >Is there anyone here who has good results from RAI? Yes. I had RAI in January. I am 28 years old and had RAI because I had an allergic reaction to PTU. Towards the middle to end of April I began to experience some hypo symptoms (most specifically muscle spasms). I called my doctor and we did some more blood work. (I had blood drawn every 4-6 weeks or so after the RAI) He put me on Synthroid the beginning of May. Towards the beginning of June I started to feel a little fluttery again so we lowered my Synthroid dose. I feel great. I haven't felt this good in over a year (since before I started experiencing Graves symptoms). A few weeks ago my doctor gave us the go ahead to start trying to get pregnant again (I miscarried about a month after I was diagnosed with Graves). RAI does not equal doom. Amy J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 Hang in there, Chie. For some of us, taking Armour has meant all the difference. It did for me. Hopefully, you'll notice a difference, soon! B Re: RAI > thought rai would make me feel better and that's what > my 4 doctors told me. After RaI, there is the > possibility you would turn HYPO, doctors said, and > hypo is easy to manage than hyper.....aRGhh,,,these > are all LIE....SO HOW COME one year after RAI, I FEEL > WORSE than I was hyper? (3 FORMER ENDOS FIRED SO far > and a cousin doctor who highly recommended RAI 4 me). > > I have switched to a NEW ENDO recently (Aug 19)and he > prescribed ARMOUR (1 GRAIN=TO BE taken 2x/day) > Everyday is a struggle for me. How can I function if > everyday I am always experiencing muscle aches, > fatigue, always sleeping, headache, weight gain (a > year after RAI on 4/01) I never experienced these > symptoms before when I was hyper. The only problem I > had then was my eye(dry/blurry vision),that was it and > i can eat whatever I wanted w/o worrying about the > weight gain. Like Jody and most members of these > group, I OPPOSED RAI TREATMENT FOR GD, (now that i > know what it's like to be in hypohell!)...so SAd, I > can't have my thyroid gland back to life > now....Trusting these doctors was a big big mistake. > > CHIE > > > > > --- josyd_2 wrote: > > It seems to me that most of you don't like the RAI > > treatment. Why?? I > > have talked with several graves patients that have > > had it and are now > > absolutely fine. Why the negativity with it?? > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 hey pam b how are you. tommarrow i go in for RAI. i am starting to think i am rushing it. i hear that i can fell worse than i feel now. hope to here your thoughts. thanks george and peggy Pam B wrote:Hi Josy, I hope I didn't make you feel bad about your choice to do RAI, you asked why some of us were against RAI and I just let it pour out Since you have already done RAI, I really hope that you are one of those " lucky " people and that all goes well for you. Let us know how it goes! Pam B. My story: http://www.webmosaics.com/thyroid/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 Pam B, I have celiac disease, and already have a risk 70- 100 TIMES the normal rate of small bowel cancer. I would very much like to know which study you are referring to when you mention in your " Why I will never do RAI " list. Woo hoo...I am almost jumping for joy, this would be a huge deterrent for trying to give me RAI, I imagine! Kit --- Pam B wrote: > First of all, why kill the thyroid when it is > not the thyroid that is the > problem? The immune system is what is sick and > killing the thyroid does > nothing to solve that problem. Once the > thyroid is gone, the antibodies may > try to find another organ to attack - like the > eyes for example. > > Second of all, this stuff is toxic to the whole > person and the people who > come in contact with them. I don't want someone > who just had RAI sitting > next to me at the movies or standing in the > checkout line next to my son for > example. Or the unsuspecting pregnant woman > for that matter... yes they > tell you to stay away from pregnant women, but > what about the newly pregnant > woman who isn't showing and it's the most > critical time in organ development > for the baby? No one would know to stay away > from her. > > 3rd, Doctors do not fully understand the long > term effects of RAI. Most > don't warn people that RAI puts them at a > higher risk for thyroid cancer and > bowel cancer down the road. Nor do they always > tell people about the chance > of Thyroid Eye Disease developing after RAI. Or > any of the other problems > that can arise. > > 4th, RAI can make having children difficult or > impossible. Studies have not > been published on the effects of RAI on future > children. > > 5th, Why not try to do everything else first > and have a chance at remission? > Why do doctors push RAI first thing? Because A. > It's easier for them, and B. > it is the most cost effective option according > to insurance companies. > > And finally, with RAI you are trading one > disease for another. > Hyperthyroidism for Hypothyroidism. Your > friends are lucky they were able to > get regulated on the right does after RAI so > that they aren't dealing with > this, but many people are not that lucky. If a > person did not do RAI, but > tried the antithyroid med thing first, there is > a good chance they could > have reached remission and been free of either > hyper- or hypothyroidism. > With RAI, they are committed to taking that one > pill (or many pills) every > day for the rest of their life, and possibly > struggling with the dosage > amounts, etc. > > For about 14 other reasons, go here: > http://groups.yahoo.com/group/graves_support/files/Top20ReasonsRAI.txt > > > Yes, our opinions may be skewed due to the > nature of a support board. If > someone has had a good experience with RAI, > chances are they won't be > looking for support online. However, based on > the experiences of the members > on this board and other boards, I'm not going > to take my chances that I > might be one of the " lucky " ones who had RAI > and were fine. Rather, I'm > going to do everything I can to be one of the > other " lucky " ones who reaches > remission. And I'm going to keep posting my > experiences and findings so > that other people might be inspired to try to > reach remission too. > > Pam B. > > My story: http://www.webmosaics.com/thyroid/ > > Open Letter to the newly diagnosed: > http://www.webmosaics.com/thyroid/letter.htm > > RAI > > > It seems to me that most of you don't like the > RAI treatment. Why?? I > have talked with several graves patients that > have had it and are now > absolutely fine. Why the negativity with it?? > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 Hi and Peggy, If you guys are having ANY doubts, or feeling at all like maybe you are rushing into this, then I think you really should call them and tell them you aren't coming in tomorrow. It doesn't mean you won't decide to do it another day, but maybe you need some more time to understand what your options and risks truly are? Don't let them bully you into keeping the appointment either - it's your choice - ALL YOUR CHOICE! , how are you feeling now? Is the PTU working for you? I remember you couldn't stand the taste... have you thought of switching to the other one (Methimazole or Tapazole I think they are called)? I hear they don't have that taste at all. By now your doctor should have been able to get your levels pretty close to normal I think... if he hasn't then maybe you aren't on the right dose yet? And if he hasn't then he really really shouldn't be letting you do RAI yet, because RAI can make things worse right at first when the thyroid is dying and releaseing the hormones as it dies. People have gone into thyroid storm after RAI. I'm not saying that will happen, just that it could. I know you've already been through that and know how bad it is. Maybe you can get a second opinion from another endo? Really, it's a miracle you are alive, if I remember correctly. Take a little more time to make sure you are doing the right thing, or maybe even to give yourself a chance to go into remission and get off thyroid drugs alltogether. Wouldn't that be great?! Hugs to you both, I know you are going to have a tough night making a decsion! Pam B. My story: http://www.webmosaics.com/thyroid/ Open Letter to the newly diagnosed: http://www.webmosaics.com/thyroid/letter.htm Re: RAI hey pam b how are you. tommarrow i go in for RAI. i am starting to think i am rushing it. i hear that i can fell worse than i feel now. hope to here your thoughts. thanks george and peggy Pam B wrote:Hi Josy, I hope I didn't make you feel bad about your choice to do RAI, you asked why some of us were against RAI and I just let it pour out Since you have already done RAI, I really hope that you are one of those " lucky " people and that all goes well for you. Let us know how it goes! Pam B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 Hi Kit, that information comes from the " 20 reasons I will never do RAI " file in the files section of the site - I have it right here, I don't think anyone will mind If I copy and paste it one more time The sources are listed at the bottom, maybe someone else can elaborate if needed, since I am not the one who wrote it or researched it. Elaine may be able to give you some sources as well. Yes, any reason you can throw back at your doctor why you shouldn't have RAI is a good thing IMO! Whatever it takes to get them to stop suggesting it! Top 20 Reasons Why I¹ll Never Have RAI 1. It¹s permanent; if you don¹t like the results, too bad 2. Since the science is inexact and dosage a guess at best, it may take years to be fully effective, or it may have to be repeated (1) 3. Can bring on thyroid storm as the dying gland " dumps " a lot of hormone (2) 4. Graves disease is an auto-immune disease, not a disease of the thyroid, so killing the thyroid doesn¹t stop the disease 5. Results in hypothyroidism 3. Who ever said hypothyroidism is easy to treat, lied 6. Being hypothyroid is neither less debilitating nor less dangerous than hyperthyroid 7. Increased antibody titers after RAI skew lab test results, adding to treatment difficulties 8. RAI, aka spent nuclear fuel ( " nuclear waste " , in other words) is absorbed by other organs and can cause cell death or DNA mutations 9. For up to 4 weeks after dosage, we¹re exposing those around us to radioiodine 10. Studies show an increase in cancers, especially of the thyroid gland and small bowel, after RAI. (4) 11. Possibility of damaging the parathyroid, causing hypoparathyroidism. 12. RAI can cause difficulty with future attempts to become pregnant and carry pregnancies to term 13. Chance of thyroid eye disease developing increases dramatically, as RAI doesn¹t stop antibody production (5) 14. Chance of significant, unhealthy weight gain is increased 15. Replacement hormone products currently on the market, both synthetic and pig, are not comparable to our own hormone, and in some people, never feel " right " . 16. Ongoing problems as the gland gradually dies, necessitating close medical surveillance and replacement hormone dosage adjustments 17. Increased risk of developing fibromyalgia 18. For most GD patients, medication with ATD¹s creates a euthyroid state similar to " normal life " , and can lead to long-term remission as well 19. As modern science explores the human genome, a cure for GD could be found, but after RAI kills the thyroid, it wouldn¹t work 20. I131 is so dangerous it¹s transported in a lead container and kept at the hospital only for the briefest time before being dispensed by a doctor shielded in lead from head to toe. References: Radioiodine Therapy of Graves Disease; Milton D. Gross, E. Freitas, C. Sisson and B. Shapiro, Chapter 11, Page 160 " Despite a clinical experience now amounting to many hundreds of thousands of patients treated with 131 I for GD, there is still no unanimity as to the selection of the appropriate dose of 131 I. " Graves Disease, Pathogenesis and Treatment, edited by Basil Rappoport and M. McLachlan, published by Kluwer Academic Publishers. ISBN 0-7923-7790-7. Chapter 11, RAI Therapy of GD, Complications and Risks of RAI, pg. 162 (Acute radiation thyroiditis; Exacerbations of thyrotoxicosis (transient)); pg. 164 (thyroid storm) Werner and Ingbar¹s The Thyroid A Fundamental and Clinical Text, Eighth Edition, page 703: " Hypothyroidism may be considered an inevitable consequence of RAI therapy, rather than a side effect " This section goes on to state that Hypothyroidism may develop in as many as 90% of patients within the first year after therapy (Ref 243 Cunnien AJ, Hay ID, Gorman CA et al. Radioiodine induced hypothyroidism in Graves' disease: factors associated with the increasing incidence. J Nucl Med 1982; 23:978), with a continuing rate of 2% to 3% per year thereafter. Also: Graves Disease, Pathogenesis and Treatment, edited by Basil Rappoport and M. McLachlan, published by Kluwer Academic Publishers. ISBN 0-7923-7790-7. Chapter 11, RAI Therapy of GD, Complications and Risks of RAI, pg. 164, " Eventual hypothyroidism is an expected consequence of 131I treatment for many patients with Graves' disease and can occur within a few weeks, months, or years after treatment. Since permenant hypothyroidism eventually occurrs in 5-20% of patients with ATDs, 131 I appears to exaggerate the natural history of GD " . " (REF DS. 1998 Antithyroid drugs for treatment of hyperthyroidism. Endocrinal Metab Clin North Amer. 27: 225-248). Werner and Ingbar¹s The Thyroid A Fundamental and Clinical Text, Eighth Edition, page 703: " One report from the Co-operative Thyrotoxicosis follow up study, with a mean length of 21 years, did find an excess risk of death from thyroid carcinoma in patients receiving RAI for hyperthyroidism due to toxic multinodular goiter (262 Ron E, Doody MM, Becker DV, et al. Cancer mortality following treatment for adult hyperthyroidism. JAMA 1998: 280; 347)., Page 704, Exposure of the rest of the body to RAI 131-I: " The whole body is exposed to radiation after RAI therapy with gonadal radiation of particular concern because of gamma irradiation from RAI in urinary bladder " Werner and Ingbar¹s The Thyroid A Fundamental and Clinical Text, Eighth Edition. Page 704 -705. " Based on these results, patients with Graves' thyrotoxicosis should be counseled that eye disease is more likely to occur after radioiodine therapy than antithyroid drug (or surgical) therapy. They should also be counseled about the risks and benefits of adjunctive glucocorticoid therapy. " And Therapy of Graves Ophthalmopathy By Leonard Wartofsky, D.Ringel, and D. Burman, Chapter 19, page 272: " Since our ability to predict which patient will get worsening ophthalmopathy is poor at best, we would urge clinicians to be sensitive to a possible worsening of ophthalmopathy after Radioiodine, and to counsel their patients on the risk and to document that counselling had been given. Based upon many reports of rising TSH receptor antibody titers after 131 I as important to underlying pathophysiology, and upon the weight of randomised prospective studies (REF 110, 120, 121) there exists some basis to believe that Graves' Ophthalmopathy may be worsened by RAI until proven otherwise " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 I'm trying to (hang in there)......it's been a week now that I'v been taking ARMOUR (1 grain 2x/day), ....AND for this whole week, nothing seems to be working right...in fact today, 'm having MUSCLE ACHES/BRAIN FOG BIG TIME!! URGH...that bottle of my old levoxyl 112 mcg is so tempting, i feel like taking it now....at least muscle aches weren't that severe when I was taking the levoxyl.....I don't think i can stand feeling awful like this for one more week. I got a job interview tomorrow, i don't know how m gonna handle it...oh well, wish me luck! hope things will change by tomorrow. Did you instantly feel better on ARmoUr or it also took you weeks before you noticed the difference. How much ARMOUR are you taking?....sorry for asking so many questions. I am just so confused right now plus my brain I think is out of order, can't thiNK straight! Thanks for telling me that ARMOUR works!..maybe if i reach my right dose on ARMOUR, things will get better. BTw: does anyone here taKES MAca. i JUST TOOK ONE A WHIle ago and it helps my muscle aches a little, but stiffness is still there. CHIE --- wrote: > Hang in there, Chie. For some of us, taking Armour > has meant all the > difference. It did for me. Hopefully, you'll > notice a difference, soon! > > B > > > Re: RAI > > > > thought rai would make me feel better and that's > what > > my 4 doctors told me. After RaI, there is the > > possibility you would turn HYPO, doctors said, and > > hypo is easy to manage than > hyper.....aRGhh,,,these > > are all LIE....SO HOW COME one year after RAI, I > FEEL > > WORSE than I was hyper? (3 FORMER ENDOS FIRED SO > far > > and a cousin doctor who highly recommended RAI 4 > me). > > > > I have switched to a NEW ENDO recently (Aug 19)and > he > > prescribed ARMOUR (1 GRAIN=TO BE taken 2x/day) > > Everyday is a struggle for me. How can I function > if > > everyday I am always experiencing muscle aches, > > fatigue, always sleeping, headache, weight gain (a > > year after RAI on 4/01) I never experienced these > > symptoms before when I was hyper. The only > problem I > > had then was my eye(dry/blurry vision),that was it > and > > i can eat whatever I wanted w/o worrying about the > > weight gain. Like Jody and most members of these > > group, I OPPOSED RAI TREATMENT FOR GD, (now that i > > know what it's like to be in hypohell!)...so SAd, > I > > can't have my thyroid gland back to life > > now....Trusting these doctors was a big big > mistake. > > > > CHIE > > > > > > > > > > --- josyd_2 wrote: > > > It seems to me that most of you don't like the > RAI > > > treatment. Why?? I > > > have talked with several graves patients that > have > > > had it and are now > > > absolutely fine. Why the negativity with it?? > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 Chie, If I remember, it took me a about two to three weeks to feel the full difference. Could the doctors be starting you too slowly? I think they're so afraid of making people hyper that physicians often move too cautiously when we're on a new medication! I'm so sorry you're going through this: when I am UNDER medicated, I have the symptoms you describe. B Re: RAI > > > > > > > thought rai would make me feel better and that's > > what > > > my 4 doctors told me. After RaI, there is the > > > possibility you would turn HYPO, doctors said, and > > > hypo is easy to manage than > > hyper.....aRGhh,,,these > > > are all LIE....SO HOW COME one year after RAI, I > > FEEL > > > WORSE than I was hyper? (3 FORMER ENDOS FIRED SO > > far > > > and a cousin doctor who highly recommended RAI 4 > > me). > > > > > > I have switched to a NEW ENDO recently (Aug 19)and > > he > > > prescribed ARMOUR (1 GRAIN=TO BE taken 2x/day) > > > Everyday is a struggle for me. How can I function > > if > > > everyday I am always experiencing muscle aches, > > > fatigue, always sleeping, headache, weight gain (a > > > year after RAI on 4/01) I never experienced these > > > symptoms before when I was hyper. The only > > problem I > > > had then was my eye(dry/blurry vision),that was it > > and > > > i can eat whatever I wanted w/o worrying about the > > > weight gain. Like Jody and most members of these > > > group, I OPPOSED RAI TREATMENT FOR GD, (now that i > > > know what it's like to be in hypohell!)...so SAd, > > I > > > can't have my thyroid gland back to life > > > now....Trusting these doctors was a big big > > mistake. > > > > > > CHIE > > > > > > > > > > > > > > > --- josyd_2 wrote: > > > > It seems to me that most of you don't like the > > RAI > > > > treatment. Why?? I > > > > have talked with several graves patients that > > have > > > > had it and are now > > > > absolutely fine. Why the negativity with it?? > > > > > > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
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