Top Reasons NOT TO HAVE RAI DONE plz any1 are any of these reasons valid Help!!!

[annag966]

If you're looking for reasons to avoid RAI, you might be interested in
this file, sent to me through this group shortly after I joined (a few
years ago):
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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)

[MJ13]

My papca nodule was just under 1 cm.  I told my endo from the beginnning that what was wrong with my thryroid that I wanted an agressive treatment.  So I opted for the RAI with my dose at 100. I don't regret for a minute doing RAI.  Was it a pain to be hypo for a month....OH YEAH!  Would I do it again because it helps stop thyca recurrence....Double He// YES!!!!!

[imedicmommy]

I responded really emotionally to this post initially as I am less than two weeks post RAI and am still on precautions in regards to my kids, so I'm a little touchy. Truthfully,my cancer was fairly extensive. The doctors found cancer in tissue under my jaw all the way down to the aortic arch. I believe RAI was the best option, and really I'm grateful that there is such a standardized treatment that has been used for such a long time to effectively treat this disease. My former mother in law was recently dx with ovarian cancer and is getting ready to undergo chemo which they tell her at this point has a 5-12 year survival rate. Now everyone is keeping in mind that they will come up with more ways to fight cancer in 5 years but I haven't had anyone put a number on the years I have left yet. For that I am profoundly grateful.

I will say this though. Some of the risks mentioned in the original post, I WAS told about and elected to undergo this procedure. I see a lot of people on this forum are being given their RAI from an endo, whether they are getting it for cancer or graves or some other reason. I'm being treated by a radiation oncologist. I felt like I was really well informed as to the risks and the precautions I have to take. They had me sit down with two nuclear physicists before RAI to go over all of these things. I haven't hugged my kids in 12 days because they had me come in and checked me with the geiger counter after the first week and told me that I was emitting enough radiation as to be dangerous to them. Hopefully when they recheck me this week they will lift those restricitions. So I feel really well informed and watched out for.
I can't speak to being treated with RAI for graves but I do think that getting RAI was the best option for me.

Oops I just saw the other post on this same topic so I'll copy this over there.

[Justin1967]

For thyroid cancer patients, there isn't much choice with this RAI, especially if their nodules are bigger  than 1cm. It is the only way to go and be done with the cancer..

[tm514]

You ask if RAI can increase the likelihood of developing or worsening Graves Eye Disease.  I was diagnosed with Graves a little over 2 years ago and have Graves Eye Disease for a little longer than that (even though I didn't know what it was at the time).  I was given the choice of ATD, RAI or thyroidectomy shortly after diagnosis.  For various reasons, I chose the drug route (mostly because I was moving to a different city, had other health concerns at the time and was a little overwhelmed by the whole thyroid emotional fun to make a permanent decision).  After year on anti thyroid drugs, I was told I would have to choose RAI or Thyroidectomy as it wasn't a good idea to stay on ATD long term, especially since it was evident they weren't going to get me into remission.   My (new) endo wasn't crazy about the RAI for me because he said there was some evidence that it makes Graves Eye disease worse.  He said he'd hate to recommend it because it couldn't be "taken back".  I had already been leaning towards thyroidectomy, so his opinion just about sealed the deal.  Evidently, if the connection between RAI and worsening Graves Eye Disease was real enough to make my endo leery of it in my case, I would guess there is something to it, even though it hasn't been medically proven to my knowledge.

Good luck to you in your search for a doctor you can work with!

[Applecore]

I am quick to say that I would not have had the RAI when in actuality I was only listening to my doctor and trusting him as he was highly recommended by my former endo that is not longer in private practice and actually was the one that gave me the iodine.  After reading all of this post and recognizing that I had most of what they said would happen, happen,  that's what made me say that I wouldn't have it again.  My endo is checking me in two months as I am still trying to get my tsh down.  I am seeing that he is correct in what he is doing for me, its just that I don't know what I am doing and of course want it to progress faster.  When you are not feeling good you don't make great decisions.  I know that my heavenly Father is in on this too and am comforted by this and at peace.
Thank you for your input.  I will keep that in mind as this progresses and ask to be tested every 3 months at the proper time.   Linda

[AR-10]

One thing I have learned is you need to have thyroid tests run every three months, period.

If your Endo or PCP would have been checking you every three months your rising TSH would have been caught much sooner. Way, way back when I thought I had simple hypothyroidism, my PCP would not renew my perscription for the fourth month till I had bloodwork done. That is a good policy, I think.

Sorry you regret your treatment decision.
Hope you find a way to lower your TSH soon.