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Top Reasons NOT TO HAVE RAI DONE plz any1 are any of these reasons valid Help!!!
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):
-------
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)
this file, sent to me through this group shortly after I joined (a few
years ago):
-------
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)
Again, I did not recieve RAI for Graves but we are about the same age and I do understand your concerns especially where your kids are concerned and the possibility of having more. I wish I could give you the information you need but all I can do is wish you the very best of luck in making what sounds like a tough choice.
Yes, you have several very good reasons to want surgery over RAI.
1) you don't have to go off your meds if you are Hypo. Not valid in your case, but still...
2) it is faster, the recovery time is short, it is faster to get you on the correct med dose.
3) It is easier on your body because of #1 and #2.
The risks are;
1) contracting Staph while you are in the hospital.
2) damage to you vocal chords.
3) infecton from surgery.
4) thyroid storm, a risk shared by RAI
5) regrowth of tissue.
6) complications from anasthesia.
Both options have good and bad.
RAI is less invasive.
I chose RAI. I won't know for a year if it worked, and my levels may bounce all over the place for that year. Then I may get to stop my meds and do it again. Going very Hypo was no fun, either.
Or have surgery like I wanted to in the first place.
1) you don't have to go off your meds if you are Hypo. Not valid in your case, but still...
2) it is faster, the recovery time is short, it is faster to get you on the correct med dose.
3) It is easier on your body because of #1 and #2.
The risks are;
1) contracting Staph while you are in the hospital.
2) damage to you vocal chords.
3) infecton from surgery.
4) thyroid storm, a risk shared by RAI
5) regrowth of tissue.
6) complications from anasthesia.
Both options have good and bad.
RAI is less invasive.
I chose RAI. I won't know for a year if it worked, and my levels may bounce all over the place for that year. Then I may get to stop my meds and do it again. Going very Hypo was no fun, either.
Or have surgery like I wanted to in the first place.
someone sent me to a post here....here is what I asked earlier and no one is helping....us as patients aren't saying its about cancer or sides....its about a disease we got for some reasons....if methimazole isn't dangerous why are they checking my liver until treatment every two weeks knowing they skipped on my for 5 years without offering a single treatment.......
I AM BEGGING FOR HELP....I HAVE TO MAKE A DECISION...PLEASE HELP ME.....
either way thank you annag966....lets stop acting like babies and fighting and actually take care of one another......this is stupid....we have a community for a page for support and most of you are being rude.....facts hurt...you can't take everything to heart but we don't have to say terrible things either.....someone might be able to help someone else.....lets not crucify but help........
here was my post.....earlier....
I have had Graves disease for about 5 years now and am getting ready to get treatment with surgery. I don't know how to put this but I am looking to see if I am on the right track with getting the surgery over the RAI treatment. I just want some personalized advice but it seems when I do want to talk about my concerns with my Dr. he teases about me overreacting or "overthinking" the options.
My concern is I will not go into remission with the medication, its not making me feel better so I have to choose an option because I've been feeling really bad lately. My primary care physician doesn't agree that nothings been done for me yet. So my Endocrinologist put me on 3 methimazole and one synthroid to shut down my thyroid and supplement. I will be seeing a surgeon but it seems suggested against to do surgery if RAI is available to me. This is what I don't like about RAI....
I have two small children ages 2 and 3 and I'm an at home mom, it would be nearly impossible to stay out of contact with them for the time frame that I need for RAI
I am going to be 30 next month, young and don't know if I want more children. I don't like what RAI can do if you get pregnant within the 6 months to a year time frame. I conceived my daughter taking precautions and it can happen again.
I don't like the ratios and concerns with patients that need the treatment twice and the concerns with having it a second time and if I did how much longer I would have to wait if I did want more children.
With this being said, being these questions haven't been answered no matter how many times I have asked them....there are no other options for dr's in my area so I need to know, do I have validity in having the surgery instead of the RAI or am I over reacting?
I AM BEGGING FOR HELP....I HAVE TO MAKE A DECISION...PLEASE HELP ME.....
either way thank you annag966....lets stop acting like babies and fighting and actually take care of one another......this is stupid....we have a community for a page for support and most of you are being rude.....facts hurt...you can't take everything to heart but we don't have to say terrible things either.....someone might be able to help someone else.....lets not crucify but help........
here was my post.....earlier....
I have had Graves disease for about 5 years now and am getting ready to get treatment with surgery. I don't know how to put this but I am looking to see if I am on the right track with getting the surgery over the RAI treatment. I just want some personalized advice but it seems when I do want to talk about my concerns with my Dr. he teases about me overreacting or "overthinking" the options.
My concern is I will not go into remission with the medication, its not making me feel better so I have to choose an option because I've been feeling really bad lately. My primary care physician doesn't agree that nothings been done for me yet. So my Endocrinologist put me on 3 methimazole and one synthroid to shut down my thyroid and supplement. I will be seeing a surgeon but it seems suggested against to do surgery if RAI is available to me. This is what I don't like about RAI....
I have two small children ages 2 and 3 and I'm an at home mom, it would be nearly impossible to stay out of contact with them for the time frame that I need for RAI
I am going to be 30 next month, young and don't know if I want more children. I don't like what RAI can do if you get pregnant within the 6 months to a year time frame. I conceived my daughter taking precautions and it can happen again.
I don't like the ratios and concerns with patients that need the treatment twice and the concerns with having it a second time and if I did how much longer I would have to wait if I did want more children.
With this being said, being these questions haven't been answered no matter how many times I have asked them....there are no other options for dr's in my area so I need to know, do I have validity in having the surgery instead of the RAI or am I over reacting?
I just posted on AR10 queston. I was feeling sorry for myself that I didn't have anybody to talk to about how I was feeling. Sometimes I don't even know how I feel. I just want to quit and do nothing. I would do what I know to do but don't know what to do and it is so much trouble to call the doctor and then which doctor. My GP had a baby and a sub is in. My endo makes me afraid to call him as he pooh poohs any symptoms that I tell him about. He is going strictly by the tests and he says my symptoms are so erratic and I guess they are. I lost 5 pounds overnight last night even though for the past couple of weeks I have been steadily gaining. I took 20 mg of methimazole before I had the RAI. Then I took nothing (I can't remember exactly if that is true, but I think it is) for about 1 year. This is a really fuzzy time for me. Then the anxiety attach hit and I found out I was hypo. I am now on 37 1/2 levothyroxin. I didn't have a lot of confidence in my endo but it does seem as though I am getting better. Maybe the stomach is another problem.
How did you find out you had bedbugs? I have been reading about that lately. That sounds like a lot of work.
I know what you mean about talking to the endo. I have made a long list of questions this time as I am learning more and more from the forum and I will get some better answers this time. How can you ask questions when you don't know anything.
Thanks again Gilda - Linda (:
How did you find out you had bedbugs? I have been reading about that lately. That sounds like a lot of work.
I know what you mean about talking to the endo. I have made a long list of questions this time as I am learning more and more from the forum and I will get some better answers this time. How can you ask questions when you don't know anything.
Thanks again Gilda - Linda (:
Oh my word, anytime you want to vent I'm all ears. Let it all out. Still waiting for this crooked hospital endocrine to get back to me with my blood tests, started on meds and begged the archaic dinosaur of an attedning endo if I can have a liver function and liver blood count tests. he said there's no need for that or any kind of uptake scan or even RAI which I was extremely thrilled and confused at the same time.
I am sorry I haven't been back on here for a few days (kinda comabtting a bed bug prb at home family wants to handle it by themselves with those do-it-yourself kit and I am begging them to get professionals to exterminate). Between moving furniture & washing all my clothes in extremely hot scaldling water to get rid of any bed bug infestation I am so tired, not sure if my thyroid or nerves acting up. I only wish I had a dryer to dry my clothes in high heat too but hoping just washing them wil be enough. Started Methimazole and Metoprolol & really not sure how I feel (been 5 days, still not sure what to eat so I don't have any bad interaction with these meds, plus the idiot dr. raised the dosages 125 MG of metoprolol & 20 MG of methimazole, I think its a bit much IMO. I still feel as though something is missing inside of me and since this idiot attending endo @ this hospital endocrine clinic won't answer my questions or concerns at all regarding side effects of these meds, I'm at the mercy of these young hot shot pharmacists, which don't know how to help. I am confused all around. Oh and those mantras & prayers that I have been saying lemme tell you something when I recite them I feel a twinge more upbeat and more safe in knowing that I can stand straight through the day. But I only wsh there was a place where I can complain about my new endo right now he makes me feel so small and stupid that I just nod my head and leave more frustrated than when I started, it hurts that they get to treat us like loyal paying dolts.
Ok well its time for me to head out... but keep me posted Linda...
Gilda741
I am sorry I haven't been back on here for a few days (kinda comabtting a bed bug prb at home family wants to handle it by themselves with those do-it-yourself kit and I am begging them to get professionals to exterminate). Between moving furniture & washing all my clothes in extremely hot scaldling water to get rid of any bed bug infestation I am so tired, not sure if my thyroid or nerves acting up. I only wish I had a dryer to dry my clothes in high heat too but hoping just washing them wil be enough. Started Methimazole and Metoprolol & really not sure how I feel (been 5 days, still not sure what to eat so I don't have any bad interaction with these meds, plus the idiot dr. raised the dosages 125 MG of metoprolol & 20 MG of methimazole, I think its a bit much IMO. I still feel as though something is missing inside of me and since this idiot attending endo @ this hospital endocrine clinic won't answer my questions or concerns at all regarding side effects of these meds, I'm at the mercy of these young hot shot pharmacists, which don't know how to help. I am confused all around. Oh and those mantras & prayers that I have been saying lemme tell you something when I recite them I feel a twinge more upbeat and more safe in knowing that I can stand straight through the day. But I only wsh there was a place where I can complain about my new endo right now he makes me feel so small and stupid that I just nod my head and leave more frustrated than when I started, it hurts that they get to treat us like loyal paying dolts.
Ok well its time for me to head out... but keep me posted Linda...
Gilda741
I use the scriptures to keep me stable. I think that positive statements create good paths for us to follow and allows the stress to leave our bodies thus enabling us to heal more quickly. I happen to believe that God exists and that He is directing my paths. He has shown me this. I am not good on responding to food choices that are good for me. It seems as though I feel like I am missing something if I don't eat what I want. I know this is really bad as I recently have been (I believe I am repeating myself, forgive me) diagnosed with major food allergies and told that I could be crohns disease if I continued on this path. I lost 50 lbs about 5 years ago and was very disiplined by eating only when I was hungry and stopping when I was mildly full. I could eat anything that I wanted and it is hard to change that mentality even though I am eating whenever I want and for the wrong reasons. I am emotionally eating, I am sure of that. I am not fat but am starting to be overweight just a little. I am 5'8" and weight 168. I've gained 20 lbs. of the 50 I lost since I have been hypo and eating out of control. With all of the symptoms that I was having, anxiety, I just couldn't seem to control the eating. I have been avoiding some foods, peanuts, bananas, but it will take some work to find out what I should eat according to thyroid and allergies as they are to everything, wheat, rice oats, greenbeans, dairy products, on and on. I don't know what to eat except meat and vegetables, but not all vegetables. Can you see why I haven't done anything. Please forgive me for complaining this morning as I awoke out of a dream that wasn't pleasant and still can't seem to get out of the feelings from the dream. It makes me feel a little discouraged but the Lord always has an escape for me and your comments allowed me to vent on this forum and share some of what I am going through. I donot want to gain back my weight (for one thing my clothes will not fit). I do a stressful job - taking care of mentally ill elderly ladies in my home. I love my job but it is stressful and when you don't feel good yourself it makes it at times seem impossible. I need to work and it scares me when I think I might have to stop. My ladies are old and I would like to keep them until they pass on. That is what my dream was about, feeling as though I couldn't continue and feeling weak and frightened. It makes me mad when I have something like that. I know I can do this job and it is because of the weakness in my mind yet that this happens. I am not straightened out with the tsh yet. Last test 3 weeks ago was 7, down from 19. He says 5 is normal but my MD says he prefers 1. I won't know until I get there. I also have nodules pumping hormone into my system whenever they want. They didn't die as they were supposed to from the RAI.
Please forgive me for just telling all this morning but I really needed someone to listen and my poor husband hears and sees enough. It is hard for him to understand but he tries and he for the last 5 months has taken over caring for my clients. He never cooked and he did all the cooking for that period of time. I am starting to cook and get back into the swing of things and for that I am grateful so it is not all doom and gloom, just don't like to feel bad at all.
I know this is boring but It sure makes me feel better to let it out. I don't know how you do it resisting food. I cook every day for 6 people and I love to cook. I need to find good food that is good for you. By the way I try to do all organic when I can get it.
I have not asked my endo if he is a thyroid specialist, just assumed he was. I think I will ask him that along with all the other questions that I am learning from this forum. lol linda
PS. If you have a bible, the psalms are great for repeating when you are not feeling well. (:
Please forgive me for just telling all this morning but I really needed someone to listen and my poor husband hears and sees enough. It is hard for him to understand but he tries and he for the last 5 months has taken over caring for my clients. He never cooked and he did all the cooking for that period of time. I am starting to cook and get back into the swing of things and for that I am grateful so it is not all doom and gloom, just don't like to feel bad at all.
I know this is boring but It sure makes me feel better to let it out. I don't know how you do it resisting food. I cook every day for 6 people and I love to cook. I need to find good food that is good for you. By the way I try to do all organic when I can get it.
I have not asked my endo if he is a thyroid specialist, just assumed he was. I think I will ask him that along with all the other questions that I am learning from this forum. lol linda
PS. If you have a bible, the psalms are great for repeating when you are not feeling well. (:
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