Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
I found this on another board while searching around and thought it was kinda interesting although it shouldn't be used SOLEY as a reason to avoid RAI. Be sure to do your research...
If you're looking for reasons to avoid RAI, you might be interested in
this file:
-------
Top Reasons Not To Have RAI
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)
If you're looking for reasons to avoid RAI, you might be interested in
this file:
-------
Top Reasons Not To Have RAI
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)
Sounds like it came from Thyroid 101 and also from mediwiki (or something like that). Many of these were written by the RAIers who had problems afterwards. They did the research and came up with these reasons and the links to go with the reasons.
{{{hugs}}} :-)
Can you do us a big, big favor and put the original link on here that has the references for further reading that matches the numbers after each statement, like (1) and (10), etc? Some people might like to do the further reading that this article is directing them to.
Thanks a bunch!!
Hannah
http://www.medhelp.org/posts/Thyroid-Disorders/Top-Reasons-NOT-TO-HAVE-RAI-DONE-plz-any1-are-any-of-these-reasons-valid-Help/show/314837
This is already in the Thyroid 101 info I gave to you to put in the Graves' Disease General.
{{{hugs}}} :-)
#19 contradicts both itself and #'s 13 & 4. Can't have it both ways, folks. #17 mentions "increased risk of fibromyalgia-like symptoms" but doesn't say compared to whom. Do people with autoimmune diseases in general have more fibromyalgia?
#14 talks about weight gain, always a hot issue for women. Many people diagnosed with Graves' are underweight at diagnosis. I don't see any numbers about post-RAI weight gain. Before and after BMIs for a large group would be helpful here. Did people just go back to a healthy weight or blow up like the Goodyear blimp?
#16 talks about the need for dose adjustments of replacement hormones. Kinda like ATDs, isn't it, where dietary changes, stress, hormonal changes, or sometimes just a change in the wind make a person's levels go off again. #18 talks about "most" people on ATDs doing well. What percentage is "most"? How about those for whom ATDs weren't a good solution? Right now on the discussion list on this site (which is very pro-ATD) there are people having trouble with levels, hives, liver damage, etc.
Several of these arguments refer to "studies". Are these large, scientific, studies, published in peer-reviewed medical journals, or did someone compile results from a poll on i-hate-rai.com? Without references to actual valid studies, we can't evaluate any of these claims. There are plenty of people around who say they feel much better if they wear tinfoil helmets to block radiation, too. Shall we all spend the afternoon making hats?
My personal favorite might be #5, where Dutch researchers concluded that a number of RAI patients who couldn't return to work might benefit from "psychological support", not medical help. Are they implying that there is some sort of post-RAI psychosis or paranoia going on? This article doesn't say.
The one fact we all know, or soon will, is that Graves', to be blunt, sucks. There aren't any truly good answers- any treatment carries its own risks, including the risk of leaving you worse off than you were before. Several members of this board have had RAI and don't regret it at all. If anyone has links to actual large-scale, statistically valid, peer-reviewed studies, lets look at those. That's where you're more likely to find relevant information. In the meantime, we all have to choose how to handle this disease, and RAI is one option.
by annag966, Oct 01, 2007 08:28PM
To: E-mail sent to me with citations of above post
I couldn't fit all of the citations of the post above giving credit where its due
~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~
(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.
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 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"
Thanks
Here's the link as you are already a member:
http://www.dailystrength.org/groups/graves-disease-general-info/discussions/messages/10282906
{{{hugs}}} :-)
{{{hugs}}} :-)
http://www.steadyhealth.com/shortness_of_breath_and_upper_chest_tightness_after_total_thyroidectomy_t126329.html