Top 20 Reasons Why I'll Never Have RAI

1. It's permanent; if you don't 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 doesn't 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, we're 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 doesn't 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 ATD's 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 wouldn't work

20. I-131 is so dangerous it's 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, John E. Freitas, James 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 Sandra 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 Ingbar's 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 Sandra 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 permanent hypothyroidism eventually occurs in 5-20% of patients with ATDs, 131 I appears to exaggerate the natural history of GD".

-(REF Cooper DS. 1998 Antithyroid drugs for treatment of hyperthyroidism. Endocrinal Metab Clin North Amer. 27: 225-248).

-Werner and Ingbar's 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 Ingbar's 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, Matthew D.Ringel, and Kenneth 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"

(Gathered by 'Graves_support Group', in a collective effort).