RAI - Radioactive Iodine
Posted 25 November 2008 - 07:50 PM
1. It's permanent; once you swallow this there is no changing your mind and starting over.
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 doesn't stop the disease process; without adequate thyroid tissue, the antibodies that cause hyperthyroidism may go on to affect orbital or dermal tissue, causing Graves' ophthalmopathy and pretibial myxedema.
5. Results in hypothyroidism.
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 (3)
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, we're exposing those around us to radioiodine. This is demonstrated by patients registering measurable radioidine in airport and other screening devices.
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. (5)
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 pregnany 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 doesn't 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 ATD's 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 wouldn't 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 Crohn's disease.
20. I131 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.
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, 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."
(2) 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)
(3) 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.
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 permenant hypothyroidism eventually occurrs 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).
(4) 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"
(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 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."
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"
(7) According to P.Reed Larsen, writing in Williams' 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.
(8) Salivary and lacrimal gland dysfunction (sicca syndrome) after radioiodine therapy.
View Member Profile Jul 8 2006, 07:21 PM Post #2
Joined: 20-September 99
From: NE Georgia
Member No.: 460
FROM THE RAI AND ME THREAD...accurate info on radiation.
Some of the comments in this post are totally and completely FALSE. They are either being made up or are being obtained from very unreliable sources of information. So here are some facts about radiation.
First of all, to compare RAI to spending a day in the sun is like comparing apples to oranges. When a person spends a day at the beach, one is exposed to ULTRAVIOLET light,and that exposure may result in a sunburn. During a radiographic examination the pateint is exposed to x-rays, or, as some would say, the patient is irradiated. Matter that intercepts radiation and absorbs part or all of it is said to be exposed or irradiated. Ultraviolet light is located in the electromagnetic spectrum between visible light and ionizing radiation. It is responsible for molecular interactions that can result in sunburn. Ionizing radiation is a special type of radiation that includes x-rays. Ionizing radiation is any kind of radiation capable of removing an orbital electron from an atom with which it interacts. So while ultraviolet falls with in the spectrum of electromagnetic radiation it cannot be compared to any form of radiation that is used in a medical sense.
There are several units used to measure radiation. The ® or roentgen is the unit of radiation intensity. The (Rad) is the unit of radiation absorbed dose. Biologic effects usually are related to the radiation absorbed dose,and therefore the rad is the unit most ofen used when describing the radiation quantity received by a patient. The (Ci) curie is a unit of radioactivity. The millicurie (mCi) and the mircrocurie are common quantities of radioactive material. (Personally I am not familiar with which unit that most doctors use in describing the dose of RAI that was given)
Radioactive material is not here one day and gone the next. (This is something we all agree all, this is why the thyroid is slowly ablated) Rather radioisotopes (which is what I131 is) disintegrate into stable isotopes of different elements at an ever-decreasing rate, but the rate and consequently the quantity of radioactive material never quite reach ZERO. To describe the decay of radiation we use a quantity called half-life. The half-life of a radioisotope is the period of time required for a quantity of radioactivity to be reduced to one half its original value. Each radioisotope has a unique,c characteristic half-life. The half life of (131)I is 8 days. If 100mCi of(131)I were present on Jan 1 at noon, then at noon on Jan 9 only to mCi would remain; on Jan 17, 25 mCi would remain,and on Jan 25, 12.5 mCi would be left. This type of curve allows one to determine the amount of radioactiviy remaining after any given time. After about 25 days it becomes difficult to graph the decay. Theoretically, all the radiactiviy of a radiosotope NEVER disappears. After each period of time equivalent to one half-life, one half the activity present at the beginning of that time will remain. Therefore, although the quantity of radioisotope progressively decreases, it never quite reaches zero, regardless of how long a period is observed.
The following list gives some of the human population groups in which radiation responses have been detected.
1. American radiologist
2. Atomic bomb survivors
3. Radiation accident victims
4. Marshall islanders
5. Residents of areas of high environmental radiation.
7.Radium watch-dial painters
8.********* (131) I PATIENTS***********
9. Children treated for enlarged thymus
10. Ankylosing spondylitis patients
11. thorotrast Patients
12. fetuses irradiated in utero
13. Volunteer convicts
14. Cyclotron workers
By "human responses" I mean the following
A. Early effects of radiation on humans
1. Acute radiation syndrome
a. Hematologic syndrome
b. Gastrointestinal syndrome
c. Central Nervous System syndrome
2. Local Tissue damage
3. Hematologic depression
4. Cytogenetic damage
B. Late effects of radiation on humans
2. Other malignant disease
a. Bone cancer
b. Lung cancer
c. Thyroid cancer
d. Breast cancer
3. Local Tissue damage
4. Life Span shortening
5. Genetic damage
a. cytogenentic damage
b. doubling dose
c. Genetically significant dose
C. Effects of fetal irradiation
1. Prenatal death
2. Neonatal death
3. congenital malformation
4. Childhood malignancy
5. Diminished growth and development.
All of the above radiation information was obtained from "Radiologic Science for Technologists" Fifth Edition, Stewart C. Bushong, Copyright 1993 by Mosby-Year Book, Inc.
If anyone has any questions I will try to find an answer for you. I am in NO WAY an expert about radiation, but I do have about 15 textbooks that are filled with information. Most of it applies to diagnostic x-rays and not nuclear medicine but I will try and find an answer for you.
Some people remind me of politicians and they will say anything if it makes their side of the road seem more appealing. I feel like every person has a right to the truth. The truth never needs sugar coated.
View Member Profile Jul 8 2006, 07:21 PM Post #3
Joined: 20-September 99
From: NE Georgia
Member No.: 460
From Granny Chris on radiation.
Granny Chris posted this in another thread a while back, I'm repeating it here. I know that we are told that they try to calculate the dose of RAI based on the weight of the thyroid gland itself and volume measurements that they get from the uptake and scan....but more and more medical journal articles that I'm reading are leaning towards giving up even attempting to calculate a dose and choose instead to go for a full ablative dose of 10,000 rads (per thyroidmanager.org site). A chest x-ray, per Rugratsmom, who is an x-ray technician is less than 1 rad .
-- I-131 thyroid ablation: Thyroid 10,000 rad
-- I-123 thyroid scan and uptake: Total body: 0.0065 to 0.013 rad Thyroid: 2.6 to 5.1 rad
-- CT of head & body: 1.1 rad
-- Upper GI: 0.245 rad
-- Lower GI: 0.405 rad
-- Chest x-ray: 0.005 to 0.020 rad
-- Lumbar spine x-ray: 0.130 rad
-- Dental x-ray: 0.010 rad
-- Round-trip airplane flight from NY to CA & back: 0.005 rad (I've read higher figures for this; I'm giving you the lowest)
-- Naturally occurring background (ground, air, other people, etc): 0.015 to 0.140 rad/year
-- Cosmic radiation (outer space, stars, sun, etc): 0.026 to 0.050/year
-- Natural gas in home: 0.009 rad/year
-- Building materials: 0.003 rad/year
-- Drinking water: 0.005 rad/year
-- Radionuclides in your body (absorbed from food, water & air): 0.039 rad/year
View Member Profile Jul 8 2006, 07:26 PM Post #4
Joined: 20-September 99
From: NE Georgia
Member No.: 460
RAI and ME.... (from Hiroshima)
*NOTE* THIS POST WAS ORIGINALLY MADE IN MAY 2002, BUT IS PERIODICALLY EDITED TO KEEP IT CURRENT.
I was diagnosed in the summer of 99 with Hashimotos. I was pretty sick at the time, but contributed all to the stress of having had constant company that summer. At diagnosis, my TSH was 200 (limits .5-5.5)! I don't know why I wasn't comatose! Going down a list of hypo symptoms, I had em all! I had no insurance at the time, so I chose an endo I could afford. Unfortunately, I got my money's worth!
About four months after diagnosis, my Hashis became what I thought was Hashitoxicosis. <Hashitoxicosis is transient periods of hyperthyroidism seen in Hashimotos. As the thyroid cells are destroyed by the TPO antibodies, excess thyroid hormone floods the bloodstream and causes hyperthyroidism. Now I believe that GD and Hashi's are the same disorder, opposite ends of the spectrum depending on which antibodies are predominant.> After nearly a year of hyper labs, Synthroid reduction and eventually coming off of Synthroid altogether, the endo told me what my 3 options were (neglecting to tell me the pros and cons of each) and said I needed RAI. I couldn't afford it, so I "settled" for Tapazole, much to my Doctor's dismay.
After 6 months of hyper labs, I was showing signs of thyroid eye disease. Each time I complained to my endo about my watery eyes and sensitivity to light along with the deer in the headlights look, the only thing he said was "Can you close them?" And since the answer was always yes, that was the end of the discussion.
By June of 2001, one of my eyes had swelling under it and was beginning to protrude. My doc never addressed it or explained anything to me about what was going on with my eyes. So when my insurance kicked in and would pay for it, I went to the endo and told him I wanted the RAI, thinking it would help my eyes. I specifically asked him if it would make my eyes better and he said, "Maybe, maybe not." He certainly never told me there was a possibility that it would make them worse!
I asked if I needed a scan to determine what amount of RAI I needed and he said I didn't need that. It had been about 5 weeks since he had done bloodwork. The last time I had it done, I was euthyroid on 10 mg Tapazole, so the Tapazole was working. Why he didn't advise me to stay on it longer I will probably never know. No bloodwork was taken right before RAI.
He gave me a list of precautions to take for a week after RAI. He did not tell me if I should continue my beta blocker or Tap after I had it done. I trusted him. Silly me. He scheduled RAI for me and I made an appointment to see him again 2 months later.
I took RadioActive Iodine (12 mCi) in Sept. 2001.Two weeks after I took the little pill, my thyroid eye disease had worsened to the point that I could not close one eye and I had double vision! Both eyes were just completely swollen and watering like a faucet. My husband made me call my GP to get a referral for an eye doc.
My GP checked my blood levels when I was there and I was already hypo. I was referred to and made an appointment to see a neuro ophthalmologist. After I got that appointment, I went home and got on the internet to see what I could find out about my TED treatment options. I found a neuro ophth that gave his email, so I wrote to him. When he wrote back to me, his first sentence was, "It is well known that RAI can worsen TED!" I ran to the bathroom and threw up! And my life has not been the same since I read that sentence.
I THOUGHT I had thoroughly researched RAI before I swallowed it. All of the websites that I found talked about RAI being the treatment of choice and safe and a cure! After I threw up, I dug deeper and found out differently. Oh how I wish I had found the websites that told the truth before I ablated my thyroid!!!
So now I am in the care of a great endo <after firing #1, #2and #3, and an excellent ophth/surgeon. I was on Synthroid .150 from March 2002 until Oct 2002. I became hypo again and my Synthroid was raised to .175. In August 2002, my TSI ab's were still elevated <325, normal <130>, which means my eye disease is still active. Since my vision is still 20/20 <even tho I have double vision> and my optic nerves are not in danger, I have postponed the decompression surgery that fired doctors have urged me to have <for cosmetic reasons>. Too many times, patients are rushed into surgery while the eye disease is still active, causing scar tissue and more damage as the disease progresses. My current doctors agree that it is my call and that since I have active eye disease, I should wait it out with no treatment. I was advised not to take steroids because of the side effects and I refused radiotherapy because of a flawed study done by the Mayo clinic. In hindsight, I may have opted for radiotherapy when my eye disease was hot.
I have had to quit working and driving. This has caused such a strain on my family financially and emotionally. I have become a self imposed prisoner in my home as I hate going out in public because of the stares and double takes I get from people. The eyes are the "window to the soul", and I battle with depression because I feel so ugly, like I have lost the girl I used to see in the mirror. <The 20 pounds I put on since RAI has not helped either!> This eye disease is worse than the thyroid disorder ever was for me. I wouldn't wish it on anyone...
However, I have come to look upon my situation as a blessing rather than a curse. I have learned patience (something I always prayed for) and I am able to reach out to others so they can be aware of what can happen with RAI, while sharing my faith at the same time. God doesn't make mistakes, and this is His will for me and I've got to trust that He is in control and GO WITH IT!
Update April 2003: I am hyperthyroid again and my dose of thyroid hormone replacement has been lowered from .175 to .150. My TSI antibodies are higher than they were 8 months ago...428%.
Update Aug. 2003...my TSI in June went down to 270%! Whoo Hoo! Opth appointment in July went well...he says there is SLIGHT improvement since I saw him in March. So, it is getting better, but the wait continues. I am hypo on .150 and hyper on .175, so I am alternating doses to see if this will get me on an even keel. I recently had a rough bout of depression and am taking Celexa for that...it helped me get out of the hole I was in!
Update March 2004...hanging in there <by a thread some days> and have not had surgery yet. My last TSI in Sept. 2003 was 245%. Still alternating doses of Synthroid and taking Celexa for depression. I am also in therapy with a Christian counselor and that has helped a lot! I was denied SSA Disability at two levels and just had an appeals hearing last week. Will update again when I find out the judge's decision.
Update Aug. 2004...TSI is down to 200. SSA Disability was denied after hearing. I will not appeal.
Aug. 2005. No more Celexa (ever) or therapy. My proptosis went from 34mm to 30mm with no treatment. However, after a year with no more improvement (nor worsening) I decided to proceed with bilateral transnasal decompression surgery. It was performed (a brilliant performance BTW) March 21, 2005 by Dr. Bill Berry, JR, an ENT in VA Beach. When I saw my ophth in August, he didn't recognize me and said he has never seen such dramatic results from decompression! Stoked! Next, I have a consultation with a pediatric eye muscle surgeon coming up, since my double vision got tons worse after decompression.
Here is the moral to my story...
First, don't trust a person just because their first name is Doctor. That is what I did and it has cost me dearly. Please find a doctor who is concerned about getting you well, listens to you, asks you questions about how you feel and doesn't say, "Well, it doesn't have anything to do with your thyroid."
Second, we patients are given some choices for treatment of hyperthyroidism. Only one of these choices deals with the autoimmune disorder that is the root of our problem, and that is antithyroid medications. This is the treatment of choice in Europe and Japan. It should be the first step in treatment for all Hashitoxicosis and Graves patients. Our thyroid is not the enemy here, it is the autoantibodies that have gone amok! The risk of developing side effects from meds is 1%! You CAN take it for many years, a lifetime if necessary. And remission is possible!
Some of us cannot tolerate the meds <and some of us are lied to about "allergies" to meds, are over or undermedicated on meds, or limited to a time frame for usage>. So we are left with choosing the lesser of 2 evils...RAI or surgery. And it is a personal decision that no one should make for you. But out of those 2 choices, the risks are greater for RAI than surgery in my opinion. Day after day, I read stories of people developing TED after RAI, among other problems. This does not happen as often with meds or surgery. RAI sould be a last resort for GD patients, not the "treatment of choice." <Unfortunately with thyroid cancer, there IS no choice.> I am a firm believer that RAI is outdated, unsafe and barbaric.
Third and very important....RAI IS CONTRAINDICATED FOR PATIENTS WHO HAVE THYROID EYE DISEASE!!!
This is a link to The Atomic Women website, one that I wish I had found about 3 weeks sooner than I did:
Again, the decision is yours and yours alone. My advice is to please please please do your homework and dig deep before you make a permanent decision about treatment! Don't be pressured. Make a decision that YOU will not regret.
My pictures and story:
View Member Profile Jul 8 2006, 08:44 PM Post #5
Joined: 20-September 99
From: NE Georgia
Member No.: 460
Below are 2 letters from Brian in the graves_support group regarding RAI. Yes, they are long, but they are full of more information than you will find on it's own and explained so that we can understand them. Thank you Brian for allowing us to post these at mediboard with the other RAI information.
This is Brian Coughlin; I'm not a Graves sufferer--my wife has a borderline case which is being managed through diet--but I wanted to share what I could with you, at least regarding radiation issues.
First of all, my heart goes out to you; I know what it's like to have a disease which not only affects your "physical" health, but which plays with the very emotions which were supposed to *help* us get the energy, focus, etc., to deal with our problems (like diseases, among other things)! I also know (as a Leukemia patient, currently in remission) about medical interventions which cost an insane amount of money, without the money to pay for them (as a school teacher).
More tactically, though, I'd like to offer what I can, so that you can make a more informed choice about RAI vs. its alternatives.
There are three basic types of radiation: ALPHA radiation (which is very
weak, and can be stopped by a piece of paper--our skin can easily block
alpha radiation); BETA radiation (which is a bit stronger, and usually
requires 0.025 inches of Plexiglas, or the equivalent, to block it--beta rays penetrate skin); and GAMMA radiation (which is fiercely strong, and which requires several centimeters of lead shielding—or several meters of concrete--to stop them). Radiation is a fancy word for "energy particles/waves which radiate out and hit things"... and if it's weak radiation, then it doesn't do any significant damage when it hits (such as Alpha particles, which usually either bounce off our skin, or are harmlessly absorbed). But Beta and Gamma radiation aren't playthings; they're capable of doing significant damage to our immediate bodily health, and especially to our genetic structure. (Damage to our DNA can result in malfunctions when our cells are replicating... which can result in cancers, tumors, other sorts of organ damage, etc.). Gamma radiation is so dangerous that one needs a special license, with special containing equipment, even to handle tiny quantities of Gamma-emitting substances. The Federal and state governments are fiercely strict about the handling and care of "gamma-emitters".
You're currently talking about RAI ablation--by which a radioactive isotope (i.e. type) of Iodine named "I-131" (the "I" refers to Iodine, and the "131" refers to the atomic weight of the nucleus of a single atom of this stuff) is put into your body for the express purpose of destroying your thyroid gland through radiation burn. (Those who designed this technique take advantage of the fact that our bodies naturally channel Iodine to specific areas--most especially the thyroid gland.) Once the thyroid is destroyed, the patient is them put on replacement hormones (i.e. the hormones that the thyroid was previously making) for the rest of their lives. That's the theory, anyway.
There are a great many serious concerns that should be weighed when
contemplating RAI--and most others on this board can tell you far more
than I ever could, about that--but your last e-mail dealt with the question of "will others be exposed to dangerous radiation while I'm having this procedure done"? Apparently, your hospital and/or doctors led you to believe that the answer is "no." I'm sorry to have to contradict them (and to distress you, thereby), but their guidance in this specific matter is quite wrong.
I-131 is a GAMMA-emitter; it emits a great quantity of gamma radiation
(which, again, cannot be stopped except by the equivalent of several centimeters of pure lead shielding) which will *certainly* affect those who are within any appreciable distance of you (i.e. several meters, at very least), as well as contaminate any objects on which you sleep, sit, wear, or otherwise make close and sustained contact. If this were not so, then I-131 would be incapable of destroying your thyroid tissue at all Simple logic shows that any radiation capable of destroying a thyroid is quite capable of damaging or destroying other types of bodily tissue; the I-131 doesn't "poison" the thyroid quietly... rather, it *burns* it out through sheer force of radiation. And as I said, the very definition of "radiation" is "that which radiates outward". It's logically and physically impossible for I-131 to hit "only" your thyroid--just as it would be impossible for a forest fire to cast heat and light only in one direction.
>>> But as I already said, my boss and his wife have also looked into RAI, since I keep them 100% informed on everything that I have medically done to me, and they feel that their children are perfectly safe with me. If this was harmful, I would have been told this by the hospital. I specifically asked and they said there was no problems with me taking RAI at all. <<<
I'm afraid your boss and his wife are basing their decision on inadequate information; and I'm especially disturbed to hear that your hospital is being so careless about the RAI precautions. I'll try my best to explain why:
Any laboratory, for example, that uses gamma-emitters must follow extremely strict guidelines--not only for the proper shielding and handling of the gamma-emitter, but for the disposal of the leftover radioactive waste. Here's an account of my wife's experience with radioactive Iodine versus laboratory happenings (she worked with radioactive materials as a graduate student in genetics):
=== quote ===
Speaking of cleaning up radioactivity, one of my lab mates made a startling discovery in the process of trying to clean up one day. He just couldn't seem to get the area clean--the Geiger counter just kept "talking". Finally, on a whim, he turned the Geiger counter on himself--and pegged it (i.e., it went off the scale)! He'd just returned from the hospital from a "routine medical test" (he didn't say what kind). The doctors let him walk around emitting at least as much radiation as we (lab workers) would only approach if it was behind a Plexiglas shield. When doctors say "oh, it's just a little radioactivity, it won't hurt anything", I take that with a big grain of salt.
=== end quote ===
Anyone who has I-131 coursing through their body has become a living,
unshielded gamma-emitter. If any lab in the United States were to be as
casual about "leaving unshielded gamma-emitters" lying around as hospitals seem to be with RAI, the lab would be shut down, the workers
who were responsible would likely be arrested (and probably tried for
several felonies), and health workers would come in (with full lead-shielded suits) to decontaminate the place.
(Can anyone else see the double-standard, here?)
I'm very sorry to cast RAI (and those who recommend it as a first option) in an unfavorable light, but facts are facts. You're witnessing the end result of fallible human lawmakers (read that: the politicians of the U.S. and state congresses, executives, and judiciary) failing to be consistent in their approaches to radioactive material (perhaps through no fault of their own). In a lab, no one would *dare* leave an unshielded gamma-emitter lying about--and our laws are almost insanely firm on the point. And yet (perhaps out of convenience, or out of an inability to entertain any other options), the same (or greater!) strength gamma-emitter is given to humans, with inadequate (or no) preparations and training of the patient (and those who would be in any close proximity to them), no shielding, no decontamination, no protocol for disposing of gamma-emitting bathroom waste--and there are no adequate laws to govern *that* state of affairs. If you can call to mind my wife's account: think of your job as a nanny, where you carry and hug a child to yourself; you're placing that child mere *centimeters* away from a live gamma-emitting source that's capable of sending a Geiger counter off the *scale* from over a foot away! Does this really sound like something which is harmless?
Please remember that I-131 "broadcasts" radiation in all directions. It's true that your body channels I-131 largely to your thyroid—but this means that your thyroid will become, at least for several days, a nuclear source which will irradiate all nearby parts of your body (including your parathyroid, your throat, the large volume of blood which goes through your neck, your mouth organs, your pituitary gland, your brain, etc.) for those days. To assume that "the I-131 will just burn out the thyroid, and nothing else" is a bit like saying "the 15-foot raging bonfire will only burn up the wood in the fire--it won't burn anyone or anything standing 2 inches away from it".
I should also add that there are other parts of your body that will "attract" any Iodine (including the gamma-emitting I-131): your breasts, your ovaries, and your salivary glands. These will become irradiated, as well--often with dire results.
(*sigh*) Melissa, I'd do anything to be able to tell you honestly that "RAI (or whatever else) is the magic bullet for Graves, etc.", but it simply isn't true--and perhaps now you can understand some of the outrage that your story has triggered among some of the members on this list. If I may be so bold as to speak for some of them in this one instance: their outrage and shock was initially and primarily directed at those who (perhaps with every good intention) are leading you badly astray (and rushing you into a procedure without all the facts, or even the basic facts necessary to protect yourself and others!)--not at you, specifically. Even the vehement reactions I've read re: your decision to continue "nannying" with I-131 in your system seemed more to be a reaction of shock and disbelief, rather than vindictiveness; they simply couldn't believe that you were cooperating in a course of action which would almost certainly put yourself and others (in this case, children)
at risk of serious danger. I, for one, believe that you've made these decisions in good faith, with whatever information you had from those whom you had every good expectation to trust (i.e. the medical personnel). However, please know that the information you've received is badly flawed; for whatever reason, your care providers are either unable or unwilling to handle I-131 (and its biological effects) with the caution that it requires.
Again: if you doubt, please check out any reliable information source on "gamma radiation", and on U.S. laws pertaining to the general handling of gamma-emitters. (The internet should have a great many such resources.) As Mr. Scott says in the old Star Trek series: "Ye cannot change the laws o' physics!" I-131 simply doesn't care whether its users are informed or not, law-abiding or not, careful or not, and even honest or not. I-131 simply emits radiation, and destroys any material within its "reach" which cannot stand up to a concentrated bombardment of gamma radiation. Please don't be chevalier about this, Melissa. If we didn't care about you (and about the kids whom you'll be serving), we wouldn't bother to write to you at all.
Take care, and God bless and guide you in these difficult choices.
There *are* alternatives...
View Member Profile Jul 8 2006, 08:44 PM Post #6
Joined: 20-September 99
From: NE Georgia
Member No.: 460
>>> I have a question also. Since it seems obvious that this radiation can harm those around you, can it not also harm the person having it done? Do you have to worry about the effects on your own organs or blood?<<<
Common sense leads me to say "yes". In fact, that's what I was implying, when I said that I-131 not only "congregates" in the thyroid, but also in the breasts (increasing the mathematical likelihood for breast cancer and other complications), ovaries (what would happen to an egg which was genetically damaged?) and salivary glands (which can cause problems if they stop functioning properly), to say nothing of your blood, brain, etc. I don't say that there's a logical guarantee of major destruction and/or death, but it's certainly nothing with which to be careless and nonchalant. I think it was Terry who said that the only circumstance which (in her eyes) justified RAI ablation was thyroid cancer (or something equally severe)... and I agree wholeheartedly. I won't say that RAI is never justified... but it's only sensible to say that the risks should *not* outweigh the benefits; at least the
consequences of doing nothing *should* be much worse than the possible
effects of the "treatment"!
Speaking as a Leukemia patient, I'm also not very blase about radiation
effects on blood cells and bone marrow. It only takes one or two radiation-damaged stem cells in your marrow to start a nasty little lymphoma (or related "beast") growing itself into a big problem...
View Member Profile Jul 8 2006, 08:46 PM Post #7
Joined: 20-September 99
From: NE Georgia
Member No.: 460
Another post from Brian...
Hi, Lone Wolf! (IMG:http://mediboard.com/groupee_common/emoticons/icon_smile.gif) --> (Sorry to use your lupine name; I don't know your
>>> The only comment I'd like to make is to say that I-131 is both a gamma and a beta emitter.<<<
Oh... right! (IMG:http://mediboard.com/groupee_common/emoticons/icon_smile.gif) --> I didn't mean to neglect that (thank you for mentioning it!); since gamma radiation was by far the more grave threat, I was focusing on that. (We could mention that I-131 emits alpha particles, too, but they're pretty harmless, so I didn't mention them
either, at the time.)
>>>The result of ionization is to create highly reactive posting H20+cations. The body being 70-80% water, this is the most common result. H2O+ ions are able to strip the electrons right out of most other chemical bonds found in the body. This is what actually causes radiation damage: not the radiation itself but the destructive effect of positive water ions ripping apart nearby molecules.<<<
That's one of the ways by which radiation can damage living tissue, true... however, I'd add a few others. Individual gamma rays are usually more than strong enough to break molecular bonds within a DNA molecule, which can cause a host of problems (i.e. mutations, or even complete dysfunction). The sequence (i.e. the order in which it's
arranged) in a DNA strand is critically important; and if (for example) even one nucleotide (i.e. "building block" of the DNA molecule) is knocked out of place, the rest of the string could "scoot down" to fill in the gap, which would mess up *billions* of nucleotide pairs, and scramble future RNA replications, etc. (Or the "gap" could be filled by an incorrect nucleotide, or even left blank--which could disrupt the entire process... a bit like trying to zip your zipper with one tooth of the zipper missing; it's not fun to get out of that! (IMG:http://mediboard.com/groupee_common/emoticons/icon_smile.gif) --> )
Think of one of those standardized college-prep tests, like the ACT or SAT, where you fill in the bubbles for each answer; if you accidentally skip the bubble for problem #5, you'll mistakenly put the answer for #5 into bubble #6, and so on... which makes every other answer *after* that incorrect (expcept for a few lucky coincidences)! And all because of
one errant gamma ray which happened to hit one unlucky DNA molecule. If you then imagine that 2-4 days of high-volume, high-energy gamma radiation, sitting right in the middle of your throat, is throwing countless *billions* of these gamma rays every *minute*, well...
View Member Profile Apr 30 2008, 07:30 PM Post #8
Joined: 20-September 99
From: NE Georgia
Member No.: 460
View Member Profile Apr 30 2008, 07:36 PM Post #9
Joined: 20-September 99
From: NE Georgia
Member No.: 460
View Member Profile Jun 5 2008, 02:23 PM Post #10
Joined: 20-November 01
From: Western NY
Member No.: 258
Originally posted on 05-09-2002, 05:27 PM
Originally posted on 05-09-2002, 05:27 PM:
The last couple of weeks I keep reading more and more from newly diagnosed graves patients, or old timers who now experience the problems after RAI, who were pushed, rushed, bullied and or lied into RAI. One young woman was told one day she had graves, 2 days later she was given I-131, another woman is now being bullied into RAI by a doctor who will not treat her any other way, another not given ANY risk factors of RAI and on and on and on...
Well I got ragey over this today and decided to write a contract for new people to take to doctors who refuse to work with them unless they do RAI without giving them a chance to heal, to research, to decide for themselves...hey, if anyone can get a doctor to sign this, more power to them! If I had this back when I was diagnosed, and the doctor signed this, *I* would have done RAI without hesitation. We all know Doctors are not going to sign it, but maybe presenting the bullies with this will make them stop and think.
I can't help but get the impression *we*, groups like ours, are making a difference in what choice people make in their treatment decisions. I get the feeling doctors are either getting angry over groups like ours, or feeling threatened because of groups like ours, they are trying to rush patients into this much much quicker from what I am reading.
Anyhow, no sense in writing something like this if it isn't shared. (have shared it with graves_support also)
Contract For An RAI Pushy Doctor
1 - You agree to accept 100% responsibility for any adverse side effects I may suffer if I take I-131 at your request with your assurance that this treatment is 100% safe, for the duration of my life, especially if I am kept in any hypO state because of lack of proper treatment from yourself. This will include:
A - loss of work because of hypo symptoms that may become so debilitating I can't function properly or without pain;
B - weight gain, you will accept responsible for any and all new wardrobes I will have to buy in the duration of my life should I experience weight gain because of being in a hypo state with lack of proper treatment, proper labs and proper replacement hormone;
C - You will be available 24 hours a day, giving me access to your home phone number, your cell phone numbers, your pager number, your e-mail address, and take any phone calls I place into your office, your home, your cell phone or your pager; should I become depressed and need to talk; should I not be able to sleep, and need to talk; should I just need to talk or ask questions.
D - Should I be continuously cold, because of being left in a hypO state, it will be your responsibility to see that I have whatever I deem necessary to keep warm.
E - You will accept responsibility for all hair appointments, hair and nail treatments should I suffer from hypO symptoms that will cause my hair to become brittle, break or continue to fall out or affect my natural nails;
F - You will accept responsibility for any and all fertility treatments should I not be able to conceive caused by your treatment keeping me in a hypO state for my individual set point;
G - You agree to work diligently with me to make sure I do NOT go hypo in any form...this will save time and effort for both of us, and money for you. This will include working diligently to find my set point, where I feel my best.
2 - you will accept responsibility for ALL ophthalmologist visits and any surgeries that may occur as a result of I-131 bringing on or worsening my eye disease.
A . - Should I get the eye disease or my existing eye disease worsens after treatment with I-131 you will accept financial responsibility for all eye drops, eye gels, tape to keep my lids closed over night, steroid treatments, eye radiation and surgeries.
B . - If my eyes become so bad I can no longer drive and must use public transport or be driven, you will assure me that I will get to wherever I need to be day or night.
3 . - You will monitor me for the duration of my life using the Free T3 and Free T4 lab tests so we both have a clear picture of what is going on with the actual thyroid hormones. You may run the TSH for YOUR benefit but it is not to be considered in any adjustments of my hormone replacement medications I will have to be on for the rest of my life. The TSH will become your financial responsibility
4 . - You will NOT treat me as a lab value but will adjust my hormone replacement meds based on symptoms more so than lab values.
A . - You will be open to using Armour Thyroid or a combination of T3 and T4 supplements, a compound prescription using a time released T3 with T4 hormone replacement so that I may remain balanced throughout the day should *I* deem it necessary that T4 replacement is not enough for me.
4A . - You will keep close watch on ALL thyroid autoantibodies until they disappear. This will include TSI, TPO, Thryoglobulin, TRAb, both blocking and recepting, as well as the standard antibody tests in the standard thyroid antiautoantibodies panel. Should these remain high 3 months after I-131 treatment, you will then prescribe and pay for the antithyroid drug that I may be able to take, until these antibodies are no longer registering in my labs. This will assure me that you are willing to also address the autoimmune nature of this disease, rather than just ablating my thyroid and considering this enough.
5 . - You will accept financial responsibility for all necessary treatment, for the duration of my life, should I ever get any of the cancers associated with the use of I-131, this will include, cancer of the thyroid, breast, ovarian, (or testes) cervix, uterus, pancreas, and parathyroids or any others that may be deemed at a later date to be an outcome of radiation ablation of my thyroid gland.
A . - You will accept full responsibility should my pancreas, pituitary, adrenals become incapacitated for the duration of my life.
Should there be, at a later date, any other symptoms, reactions, consequences of the use of I-131 on my body released from the Department of Energy's currently sealed files, from Medical Associations, and from Independent Research that are not listed above, you will accept full responsibility in medical bills, free medical treatment and lost wages for the duration of my life.
Should I die because of an adverse reaction to the use of I-131, because of any future complications, because I became hypo and depressed and have taken my own life out of desperation, you will, willingly, without bias, pay numeration to my family, or the person I decree a sum total of Ten million dollars ($10,000,000.00) within 5 working days of my demise.
Should you expire before the end of this contract, you will designate your estate to continue with full financial obligations through the duration of my life.
If you will agree to sign this contract, after reading and initialing each item in front of a notary or your attorney and return this signed agreement to me and my attorney we will then sit down and discuss I-131 treatment. I will then be able to believe YOU that all is safe with this treatment, that you have no qualms treating me this way, and in the future because you know that none of the above mentioned consequences is a possibility...I can trust you to treat me safely, compassionately, with full medical attention.
However, should you not be inclined to sign this contract, I will fully understand , and we will both understand that I-131 treatment will not be discussed between you and I again, unless *I* choose to bring it up.
Name _________________________ Date__________________________
*Witness ____________________ Date_________________________
* Witnesses to be an attorney or at the very least a Notary Public.
Posted 14 April 2013 - 06:44 AM
While trying to find an article about something else for another forum member, I found this 2007 article
about RAI risks on the Thyroid Disease Manager website - www.thyroidmanager.org
This is copied from their home page:
Thyroid Disease ManagerÂ© offers an up-to-date analysis of thyrotoxicosis, hypothyroidism, thyroid nodules and cancer, thyroiditis, and all aspects of human thyroid disease and thyroid physiology. It provides physicians, researchers, and trainees (as well as patients) around the world with an authoritative, current, complete, objective, FREE, and down-loadable source on the thyroid. This website is directed to helping physicians care for their patients with thyroid problems. WWW.THYROIDMANAGER.ORG is updated continually with important new information, and major revisions are done annually. The latest revisions were introduced 17 September 2009. We greatly appreciate contributions for support of THYROIDMANAGER.ORG.. Contributions are tax-deductible, and should be sent to Endocrine Education, Inc.P O Box P-94, 24 Nonquitt Ave, South Dartmouth, MS 02748. For all inquiries <email@example.com>.
This is copied from their Thyroid news section for 2007:
Mortality and radioiodine treatment
TOPIC: Increased risk of cardiovascular & cancer deaths from radioiodine treatment for hyperthyroidism
Title: Increased cardiovascular and cancer mortality after radioiodine treatment of hyperthyroidism.
Authors: Metso S, Jaatinen P, Huhtala H, Auvinen A, Oksala H, & Salmi J.
Reference: Journal of Clinical Endocrinology & Metabolism 92: 2190-2196, 2007
Background: Although patients treated with radioiodine (RI) for hyperthyroidism are at increased risk for death, it is unclear if this is due to the disease itself or due to the treatment.
Purpose: To compare the mortality of hyperthyroid patients treated with RI with that of an age- and gender-matched controlled population.
Patients and Methods: A total of 2.793 hyperthyroid Finnish patients who received RI treatment between 1965 and 2002 were compared with 2.793 reference subjects, and followed for a median of 9 years.
Methods: Diagnosis, dates, and doses of RI treatment for 2.793 patients were retrospectively reviewed. The study included an age- and sex-matched control group of the same number of subjects using the Population Register Center.
Results: Patients and controls had a median age of 62 years at treatment or study; the median follow-up period was 9.8 & 10 years, for patients and controls, respectively. Overall, there was an increased all-cause mortality in the RI-treated patients versus controls. Mortality was increased due to cerebro-vascular disease (atrial fibrillation) as well as upper gastro-intestinal tumors.
Conclusions: Hyperthyroidism probably accounts for increased cerebrovascular mortality after radioiodine treatment. Results emphasize the need for careful, long-term follow-up of RI-treated hyperthyroid patients.
Radioactive iodine (131-I, RI) has been used for over six decades to treat hyperthyroidism. It is considered an effective treatment for patients with diffuse toxic goiter (Graves- disease) or those with toxic nodular goiter (toxic adenoma or Plummer-s disease). Moreover, it is the most popular treatment modality and treatment of choice for hyperthyroid patients in the U.S., although not so in other countries such as Japan, Germany, or U.K.
The safety of RI and its long-term side effects have been subject of many reports through the years. It was reassuring that the U.S. Public Health Service Cooperative Thyrotoxicosis Therapy follow-up Study of 1946-1964 (Hoffman DA et al, 1982) reported no increased mortality after RI treatment. In a subsequent report from the same group, another study, including 35.593 patients, showed no increased risk of mortality or cancer after RAI treatment was found (Ron E et al, 1998). More recent data on this subject have been conflicting, some suggesting an increased risk of death or of cancer after RI. For example, one U.K. study showed that the all-cause mortality was increased, whereas cancer mortality was in fact decreased (Franklyn J et al, 1998); the slightly increased mortality was caused by heart failure and arrhythmias. On the other hand, another U.K. group published a population-study and reported no increase in mortality after RAI treatment (Flynn RW et al, 2006).
In present study from Finland, Metso and colleagues report on the frequency of death and cancer after RI treatment for hyperthyroidism. The authors reviewed records of 2.793 hyperthyroid Finnish patients who had received RI treatment between 1965-2002, with a median age of 62 years and a median follow-up period of 9 years. The study included a similar number of controls, age- and gender-matched, followed for the same duration. Main results showed the following:
â� Increased all-cause mortality in treated patients.
â� Increased mortality appeared due to cerebro-vascular disease but not to coronary artery disease.
â� Patients treated with radioiodine had an increased rate of atrial fibrillation (AF).
â� Increased frequency of malignancies, especially upper GI cancer, particularly in elderly men.
â� Analysis showed that cancer risk increased with cumulative radioiodine doses.
The strengths of this report include the presence of a controlled population as well as the thoroughness and length of duration of both RI-treated and controlled groups. Although there was documented increased mortality in patients treated with radioiodine, it was not established that radioiodine was the cause of this observation. In fact, the authors state that -the present study of patients treated with RI for hyperthyroidism reports an increase cerebro-vascular mortality in patients treated with RI compared with age- and sex-matched control groups which is probably explained by hyperthyroidism. Furthermore, cancer mortality increased among the patients-. The authors recommend careful and continued follow-up of hyperthyroid patients treated with radioiodine. In conclusion, RI is still considered safe and effective, and it is likely that endocrinologists and large clinics will continue to use it to treat hyperthyroid patients, either with Graves- disease or with toxic nodular goiter. These patients should be followed for development of post-therapy hypothyroidism as well as for cerebrovascular events due to AF caused by hyperthyroidism. The small risk of cancer in elderly men, reported here, is of doubtful clinical significance. Summary and commentary prepared by Hossein Gharib (related to Chapters 11 & 17 of TDM)