Guest guest Posted October 27, 2003 Report Share Posted October 27, 2003 Hi ...I am thankful too that this list is here and posted periodically. I am offended that someone here finds it " amuzing " and laughable...Insulted that my own issues about not feeling AT ALL comfortable radiating ANY part of my body for HEAVEN SAKE, are being demeaned. I am one who will stay on my TAP for life if need be. It brought me to euthyroid state easily, and when I relapsed in May, it has been more effective now due to my following my own symptoms and monitoring how I feel. I am armed with my articles from JAMA and from Werner and Ingbar's the Thyroid which state that long term use is safe, " Very long term use of an antithyroid drug is safe, and some patients may prefer to take a low daily dose of either MMI or PTU for decades rather than receive destructive therapy " . My Endo seems to never have heard of this, but she is willing to work with me and wants her own copies of the articles. Thank you Elaine for these reports. My main point for posting...which I rarely do, is to say Thank God and this group that I still have my thyroid gland!!!!!!!! I would have surgery in a heartbeat over RAI if I should have any future problem with my tiny maintenance dose of TAP. Ruthie Re: top 22 reasons list > My latest doctor just gave me the run down on why he thinks should start > considering RAI to treat my Hyperthyroidism. I've been hyper for about 6 > years now. My PTU has just been increased from 100 miligrams a day to 200. > He says my hyperthyroid is like a " fire under a lid " -that you can't cover it > forever and it wont burn out. > Thanks for this list reminder. > - > > > > I thought, myself being the lazy sort who rarely goes to the home page, that > > many of you might not yet have seen this list. So here it is. This group > > wrote the list and found the citations. I only started the work. I find it a > > good reminder to read it once in a while. > > > > Terry > > > > > > > > Top 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 (induce or cause) thyroid storm as the dying gland " dumps " > > (releases) excess thyroid hormone and thyroid antibodies into the body; > > RAI also stimulates immune cells within the thyroid gland to produce more > > thyroid antibodies. (2) > > > > > > 4. Graves disease is an auto-immune disease, not a disease of the thyroid, > > so killing the thyroid doesn1t stop the disease process; without adequate > > thyroid tissue, the antibodies that cause hyperthyroidism may go on to > > affect orbital or dermal tissue, causing Graves1 ophthalmopathy and > > pretibial myxedema. > > > > > > 5. Results in hypothyroidism (3) > > Whoever said hypothyroidism is easy to treat, was mistaken. Because of the > > effects of thyroid antibodies, radiation-induced hypothyroidism is more > > difficult to treat than naturally occurring hypothyroidism. Hypothyroidism > > caused by treatment for *hyperthyroidism*** is known to cause depression > and > > anxiety. In one large Dutch study, " over one third of patients with a > > full-time job were unable to resume the same work after treatment. It > > appears that many of these patients are in need of psychological support. > > > > ***this is a correction of an error on the original. Needs to be fixed in > > files, if anyone can do that! > > > > > > 6. Being hypothyroid is neither less debilitating nor less dangerous than > > hyperthyroid. With hypothyroidism one is at risk of myxedema coma which > > can be more deadly than thyroid storm. This results from improper > monitoring > > and labs tests, keeping us in a hypO state. After radiation-induced > > hypothyroidism develops, it takes only 6 weeks without thyroid replacement > > hormone for patients to fall into myxedema coma. > > > > > > 7. Increased antibody titers after RAI skew lab test results, adding to > > treatment difficulties. In particular, the widely-used TSH test is > > influenced by TSH receptor antibodies, causing falsely decreased levels. > > > > > > 8. RAI, aka spent nuclear fuel ( " nuclear waste " , in other words) is absorbed > > by other organs and can cause cell death or DNA mutations. RAI is > absorbed, > > in smaller amounts, by other organs besides the thyroid, including breast > > tissue, the genitals, pancreas, and the gastric mucosa. > > > > > > 9. For up to 4-8 weeks after dosage, we1re exposing those around us to > > radioiodine. This is demonstrated by patients registering measurable > > radioidine in airport and other screening devices. (7) > > > > > > 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. RAI is known to affect the ovaries, which is why > > patients are recommended to avoid becoming pregnant for at least 6 > months > > after RAI. The 6 months recommendation was increased to at least one year > in > > early 2002 > > > > > > 13. Chance of thyroid eye disease developing increases dramatically, as > RAI > > doesn1t stop antibody production (6) > > > > > > 14. Chance of significant, unhealthy weight gain is increased Studies show > > that weight gain is inevitable after radioiodine-induced hypothyroidism (7) > > > > > > 15. Replacement hormone products currently on the market, both synthetic > and > > glandular, 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 which > > usually does not happen unless a patient is educated and proactive in their > > disease and treatment. Within one year after RAI, most patients are on a > > dose of replacement hormone equivalent to 0.1mg levothyroxine; 5-6 years > > post RAI, most patients are on 0.175 mg levothyroxine because of the > > progression to autoimmune thyroid failure. > > > > 17. Increased risk of developing fibromyalgia like symptoms > > > > > > 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. (8) > > > > 19. As modern science explores the human genome, a cure for GD could be > > found, but after RAI kills the thyroid, it wouldn1t work. Current research > > is directed at modulating the cytokines, immune system chemicals released > > during the immune response and necessary for autoantibody production. > > Treatments of this nature are already being used successfully in Crohn1s > > disease. > > > > 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. > > > > 21. When cats are given I-131, they must be kept in a contained facility for > > up to 6 weeks until they no longer set off warnings on a geiger counter, yet > > people, especially in the U.S.A. are released with in minutes of treatment > > on an unsuspecting population. Germany keeps I-131 patients for several > days > > in a contained radiation facility until their radioactive numbers are in a > > *safe* level. Is there REALLY anything *safe* about ingesting I-131? (9) > > > > 22. Salivary and tear duct damage from I-131 (10) > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > ~~~~~~ > > > > 1 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. " > > > > 2 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) > > > > 3. 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 Graves1 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 Graves1 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). > > > > 4 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 " > > > > > > > > Also: > > > > Women with Thyroid Cancer at Risk for Breast Carcinoma > > > > > http://thyroid.about.com/gi/dynamic/offsite.htm?site=http://www.newswise.com > > /articles/2000/9/CANCER2.AAO.html > > > > (5) Am J Surg 1984 Oct;148(4):441-5 Related Articles, Links Induction of > > hyperparathyroidism by radioactive iodine. Rosen IB, Palmer JA, Rowen J, > Luk > > SC. > > > > PMID: 6486309 [PubMed - indexed for MEDLINE] > > > > > > (6) Werner and Ingbar?s The Thyroid A Fundamental and Clinical Text, > > Eighth Edition. Page 704 -705. > > > > " Based on these results, patients with Graves1 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 Graves1 Ophthalmopathy may be worsened by > RAI > > until proven otherwise " > > > > (7). Is excessive weight gain after ablative treatment of hyperthyroidism > > due to > > inadequate thyroid hormone therapy? > > > > > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list > _ui > > ds=11201857 & dopt=Abstract > > > > (8) According to P. Larsen, writing in 1 Clinical Textbook of > > Endocrinology, > > most patients can achieve remission with anti-thyroid drugs. The drugs are > > used to both > > lower thyroid hormone levels and mildly suppress the immune system until > > remission is > > achieved. Most side effects of these drugs are related to inappropriately > > high doses. > > > > (9). Radioiodine therapy of Graves' disease--quality assurance and > radiation > > protection] > > > > > http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list > _ui > > ds=10355053 & dopt=Abstract > > > > > > > > (10). Salivary and lacrimal gland dysfunction (sicca syndrome) after > > radioiodine therapy. > > > > > http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=11337569 & form=6 & > db=m > > & Dopt=r > > > > ------------------------------------- > 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. 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