Aa
Just Diagnosed - RAI and Stress!?
I was diagnosed with hyperthyroid and most likely Graves yesterday. My TSH was 0.1, T4 was 19.4 (normal 4.5-12) and T3 was unmeasurable - over 2000 (normal was 230-420). (Still fuzzy on what these even are!!) My main symptoms were extreme shortness of breath with physical exercise and racing heart and daily diarrhea (lovely). I have no family history so this was likely brought on by stress. Looking back, this probably started about 5 months ago? I have a million questions, but the two that are at the forefront now are:
1)Is RAI as dangerous as I have been reading?? My GP made it sound like a quick fix and is sending me to an endocrinologist on Monday to discuss it. I've only been seeing negative posts - does ANYONE recommend it?? I live in Colorado in the States - any suggestions on Drs here?
2)If my stress level is such that it can cause something like this, has anyone found stress-reduction techniques that WORK?! Finding out that I have this has raised my stress level above what it was!!! I'm snapping at people at work and at my parents who are trying to help me. At least now I have something to blame it on!?
Finally, thanks for this - I started reading it last night trying to get info on what's going on with my body and kept hearing myself in other's words. Could be worse, right?!
1)Is RAI as dangerous as I have been reading?? My GP made it sound like a quick fix and is sending me to an endocrinologist on Monday to discuss it. I've only been seeing negative posts - does ANYONE recommend it?? I live in Colorado in the States - any suggestions on Drs here?
2)If my stress level is such that it can cause something like this, has anyone found stress-reduction techniques that WORK?! Finding out that I have this has raised my stress level above what it was!!! I'm snapping at people at work and at my parents who are trying to help me. At least now I have something to blame it on!?
Finally, thanks for this - I started reading it last night trying to get info on what's going on with my body and kept hearing myself in other's words. Could be worse, right?!
In my opinion if you are only mildly hyper I would not, I repeat not, never take RAI.
I was treated for hyperthyroidism due to Graves on Feb. of 05. Within 2 mos. of RAI I went extremely hypo & even though I'm taking Armour thyroid replacement & my thyroid levels are close to normal now, I still feel awful. I have difficulty even functioning @ times. I was extremely hyper before & did not know much about RAI & neither did my family Dr. who recommended it as the treatment for my condition. I was not given a choice. I wished I would have known & insisted on controlling it with medications instead. Now they have killed off my thyroid & there is no going back. Replacement meds do not have the same effect as your own thyroid hormones. I suffer from chronic fatigue, 45# wt. gain, difficulty concentrating, hair loss, depression, graves eye disease, etc....there's more but I can't even think right now.
I would not ever choose RAI again. Hyperthyroidism was bad but could be controlled with medicine...but this is terrible & unrelenting. And it just makes me wonder...if I'm ever going to feel normal again? Good Luck, Jean
I was treated for hyperthyroidism due to Graves on Feb. of 05. Within 2 mos. of RAI I went extremely hypo & even though I'm taking Armour thyroid replacement & my thyroid levels are close to normal now, I still feel awful. I have difficulty even functioning @ times. I was extremely hyper before & did not know much about RAI & neither did my family Dr. who recommended it as the treatment for my condition. I was not given a choice. I wished I would have known & insisted on controlling it with medications instead. Now they have killed off my thyroid & there is no going back. Replacement meds do not have the same effect as your own thyroid hormones. I suffer from chronic fatigue, 45# wt. gain, difficulty concentrating, hair loss, depression, graves eye disease, etc....there's more but I can't even think right now.
I would not ever choose RAI again. Hyperthyroidism was bad but could be controlled with medicine...but this is terrible & unrelenting. And it just makes me wonder...if I'm ever going to feel normal again? Good Luck, Jean
Info on Plummers disease:
Hyperthyroidism or Toxic Goiter - These cases comprise Graves Disease (exophthalmic goiter) or Parrys Disease (primary hyperplastic goiter) with or without ophthalmos; Plummers Disease (toxic anenoma or toxic nodular goiter).
It may be noted here that the onset to toxic symptoms in Plummers syndrome usually occurs a number of years after the nodular goiter has been noticed. On the other is more acute in Graves Disease the thyrotoxic symptoms precede any noticeable enlargement of the gland. The onset is more acute in Gravers Disease. The goiter in toxic adenoma is nodular, usually asymmetrical and larger than we see in Graves Disease. GRavers Disease is seen in younger people, while Plummers Disease in those who are over 40.
It is believed that a neurohormonal mechanism is involved in the pathogenesis of toxic goiter. Nervous impulses stimulate the anterior pituitary to produce an increased output of thyrotropic or thyroid - stimulating hormone, followed in turn by increased activity of the thyroid cells, with over - production and release of thyroid hormone. There is a tendency for spontaneous remission and intermission, each of which will leave in its wake residual pathology. It is these cases which produce our mixed types of thyrotoxicosis in which hyperplastic and adenomatous changes may co - exist.
In a later stage, if hypertrophy and hyperplasia continue for a sufficient time, a stage of exhaustion from over - work will occur. The acini of the cells become smaller and atrophic. Aside from this, there is fibrous tissue replacement of the parenchyma of the gland. These are the cases which give rise to the so called "burnt out" type of goiter.
In a thyrotoxicosis most frequently there has been psychic trauma. This is noted in 90 percent of the cases of Gravers Disease and 40 percent Plummers Disease. However, there previously must have been a susceptible constitution. From the web @ http://www.homeoint.org/hompath/articles/1321.html
Hyperthyroidism or Toxic Goiter - These cases comprise Graves Disease (exophthalmic goiter) or Parrys Disease (primary hyperplastic goiter) with or without ophthalmos; Plummers Disease (toxic anenoma or toxic nodular goiter).
It may be noted here that the onset to toxic symptoms in Plummers syndrome usually occurs a number of years after the nodular goiter has been noticed. On the other is more acute in Graves Disease the thyrotoxic symptoms precede any noticeable enlargement of the gland. The onset is more acute in Gravers Disease. The goiter in toxic adenoma is nodular, usually asymmetrical and larger than we see in Graves Disease. GRavers Disease is seen in younger people, while Plummers Disease in those who are over 40.
It is believed that a neurohormonal mechanism is involved in the pathogenesis of toxic goiter. Nervous impulses stimulate the anterior pituitary to produce an increased output of thyrotropic or thyroid - stimulating hormone, followed in turn by increased activity of the thyroid cells, with over - production and release of thyroid hormone. There is a tendency for spontaneous remission and intermission, each of which will leave in its wake residual pathology. It is these cases which produce our mixed types of thyrotoxicosis in which hyperplastic and adenomatous changes may co - exist.
In a later stage, if hypertrophy and hyperplasia continue for a sufficient time, a stage of exhaustion from over - work will occur. The acini of the cells become smaller and atrophic. Aside from this, there is fibrous tissue replacement of the parenchyma of the gland. These are the cases which give rise to the so called "burnt out" type of goiter.
In a thyrotoxicosis most frequently there has been psychic trauma. This is noted in 90 percent of the cases of Gravers Disease and 40 percent Plummers Disease. However, there previously must have been a susceptible constitution. From the web @ http://www.homeoint.org/hompath/articles/1321.html
I have been diagnosed with hyperthyroidism for the past 20 years. Back then my only option was surgery. I did not go through with it. I have an elevated T3 (not through the roof), normal T4 and low TSH. I have recently decided to pursue treatment. Told I either had Plummer's disease, first time I've heard of it, or Grave's. I doubt Grave's, I've never had eye problems. I tried ADTs and they made me sick. Am about to discuss RAI. I began to do research about RAI and found this site. Would like any advice. If anyone has information about Plummer's I would appreciate it. I've lived with hyperthryoidism all these years that I am alittle anxious about what I am reading regarding RAI. Also, if anyone has any information regarding pts. living with mild hyperthyroidism as many years as I have.
I am post RAI (02/05) by May I already showed significant signs of TED. One quick question for you & I hope Dr. responds if he reads this. I am told that I will always be considered to have graves disease even if it is in remission. In your research, is it any benefit to monitor auto-antibodies to document the progression or cessation of an attack of TED after RAI. The reason I'm asking this is, I have never had auto-antibodies even pre-RAI, but my opthmologist is sending me to an ocular plastic surgeon for a consult due increased eye pressure & worsening symptoms. He will be concerned whether this is still progressing prior to any treatment surgically. Would the auto- antibioties reflect that.
Maybe this is a stupid question but I have just been wondering. Thanks in advance for your answer. God Bless!
Maybe this is a stupid question but I have just been wondering. Thanks in advance for your answer. God Bless!
Yes, it will be of help to you to test your auto-antibodies and monitor your progress. There are several people on another board who have TED and have done alot more extensive research into that paticular area than I have. Go to:
http://www.mediboard.com/groupee
There are people who have had the surgery you are talking about with success. One girl, her ID screen name is: hiroshima, has posted her story too. You can search the archives, or go straight to the bold threads at the top of the page. There is much there that can help you. You can just read the posts or register free to be a member and make comments, or ask questions or just get support. If you register, I know hiroshima will talk to you and help you out with any questions you may have too.
Also, yes there is no known cure for Graves Disease. Yes you can go into remission. That is no auto-antibodies found. It is a disease of management.
I hope this helps.
lil deb
http://www.mediboard.com/groupee
There are people who have had the surgery you are talking about with success. One girl, her ID screen name is: hiroshima, has posted her story too. You can search the archives, or go straight to the bold threads at the top of the page. There is much there that can help you. You can just read the posts or register free to be a member and make comments, or ask questions or just get support. If you register, I know hiroshima will talk to you and help you out with any questions you may have too.
Also, yes there is no known cure for Graves Disease. Yes you can go into remission. That is no auto-antibodies found. It is a disease of management.
I hope this helps.
lil deb
Doctor,
I highly respect what you are doing here. Most doctors would not even take the time. But on this post, I agree, most doctors would reccomment RAI as a 1st or 2nd choice. But with all the recent studies, many thyroid patients are becoming more and more aware of the dangers of RAI and have chosen ATD as a long term treatment.
I am sorry to correct an error your have made stating that ATD's can only be taken for 12-18 months. This information is like this because no one has ever done any studies on ATD use for more than 18 months. I think I found 1 one time that stated 2 years with success. Many Many people successfully take ATD's for years without problems now. I personally know someone who has taken ATD's for 25 years. The possible liver damage is a very rare occurance and should be monitored and a base liver level taken prior to the start of ATD's.
Now to address the immune suppression regarding ATD's...When a person has Graves Disease. That is exactly what they need to do. Graves Disease is an auto-immune disease. The immune system is attacking the body. Though ATD's is not the answer to immune suppression, it does help.
People with autoimmune Graves Disease or Hashimotos need to have their auto-antibodies tested and monitored also. As the goal of the patient would be to reach remmission. The removal of the thyroid or the killing-off of the thyroid does not cure Graves Disease. The auto-antibodies are still there and can and many times does go straight to the eyes causing TED or the skin causing pretibial myxedema.
If a person has Graves Disease and is given RAI, it can become extrememly dangerous for the patient. Not only the radioactivity being absorbed by other parts of the body, and the cancer risks associated, but as the thyroid cells slowly die off the cells release the stored auto-antibodies in the body and many times people develop Thyroid eye disease shortly after the treatment of RAI.
If a person has been given ATD's and for some reason is not able to continue such as with liver problems. Surgery to remove the thyroid or a portion of it, should always be the second choice of treatment. The number 1 reason being that these stored auto-antibodies are removed along with the thyroid. Also, you have no radiation risks. The risks associated with surgery is a 1% chance of the vocal cord nerve being damaged, which becomes null with a good experianced surgeon. Also, there is a risk of parathyroid damage, but I am sure you know that most of the time these are placed right back in the neck and can work again. If not, the person would have to take calcium. Plus, you have your usual anestesia risks.
Another problem with RAI is that if a person has given it their best shot with proper lab testing, monitoring and doses of medication, and the levels keep swinging and will not become stable. There is a possibility a person can have thyroid cancer. If the cancer is deep in the thyroid, it may not show up on the thyroid scans. With RAI, a person would not know that they had cancer, and it could spread. With surgery, the thyroid specimin would be checked and the cancer found.
I am a firm believer that ATD's and a chance for remmision should always be given the 1st shot as treatment. Surgery 2nd, and RAI - given only in life or death situations where surgery could not be tolerated. With lifestyle changes, remission is possible. I am an example of that, I have no Graves auto-antibodies anymore, but I still have a multi-nodular goiter and am euthyroid and no longer am taking PTU. I am a patient who has done extensive research on this subject. I have learned that the understanding the endocrine feedback loop is crucial to success and managment of this disease. I say managment, because I manage my disease, no different than people manage diabetes.
There is much more that can be said on this subject, but please do a little more research, and I don't mean that disrecpectfully. You will see what I am saying is correct. I know RAI is a cheaper way to remove the thyroid, but the costs afterward are many times more costly, due to damage caused by the radioactivity.
I do have to say I was SO pleased to see that you reccommended the Free thyroid levels as many doctors don't realize the estrogens interfer with the Total Thyroid lab testing and still monitor with only the Free T4 and the Total T3. or only TSH.
Thank you for your time.
lildeb
I highly respect what you are doing here. Most doctors would not even take the time. But on this post, I agree, most doctors would reccomment RAI as a 1st or 2nd choice. But with all the recent studies, many thyroid patients are becoming more and more aware of the dangers of RAI and have chosen ATD as a long term treatment.
I am sorry to correct an error your have made stating that ATD's can only be taken for 12-18 months. This information is like this because no one has ever done any studies on ATD use for more than 18 months. I think I found 1 one time that stated 2 years with success. Many Many people successfully take ATD's for years without problems now. I personally know someone who has taken ATD's for 25 years. The possible liver damage is a very rare occurance and should be monitored and a base liver level taken prior to the start of ATD's.
Now to address the immune suppression regarding ATD's...When a person has Graves Disease. That is exactly what they need to do. Graves Disease is an auto-immune disease. The immune system is attacking the body. Though ATD's is not the answer to immune suppression, it does help.
People with autoimmune Graves Disease or Hashimotos need to have their auto-antibodies tested and monitored also. As the goal of the patient would be to reach remmission. The removal of the thyroid or the killing-off of the thyroid does not cure Graves Disease. The auto-antibodies are still there and can and many times does go straight to the eyes causing TED or the skin causing pretibial myxedema.
If a person has Graves Disease and is given RAI, it can become extrememly dangerous for the patient. Not only the radioactivity being absorbed by other parts of the body, and the cancer risks associated, but as the thyroid cells slowly die off the cells release the stored auto-antibodies in the body and many times people develop Thyroid eye disease shortly after the treatment of RAI.
If a person has been given ATD's and for some reason is not able to continue such as with liver problems. Surgery to remove the thyroid or a portion of it, should always be the second choice of treatment. The number 1 reason being that these stored auto-antibodies are removed along with the thyroid. Also, you have no radiation risks. The risks associated with surgery is a 1% chance of the vocal cord nerve being damaged, which becomes null with a good experianced surgeon. Also, there is a risk of parathyroid damage, but I am sure you know that most of the time these are placed right back in the neck and can work again. If not, the person would have to take calcium. Plus, you have your usual anestesia risks.
Another problem with RAI is that if a person has given it their best shot with proper lab testing, monitoring and doses of medication, and the levels keep swinging and will not become stable. There is a possibility a person can have thyroid cancer. If the cancer is deep in the thyroid, it may not show up on the thyroid scans. With RAI, a person would not know that they had cancer, and it could spread. With surgery, the thyroid specimin would be checked and the cancer found.
I am a firm believer that ATD's and a chance for remmision should always be given the 1st shot as treatment. Surgery 2nd, and RAI - given only in life or death situations where surgery could not be tolerated. With lifestyle changes, remission is possible. I am an example of that, I have no Graves auto-antibodies anymore, but I still have a multi-nodular goiter and am euthyroid and no longer am taking PTU. I am a patient who has done extensive research on this subject. I have learned that the understanding the endocrine feedback loop is crucial to success and managment of this disease. I say managment, because I manage my disease, no different than people manage diabetes.
There is much more that can be said on this subject, but please do a little more research, and I don't mean that disrecpectfully. You will see what I am saying is correct. I know RAI is a cheaper way to remove the thyroid, but the costs afterward are many times more costly, due to damage caused by the radioactivity.
I do have to say I was SO pleased to see that you reccommended the Free thyroid levels as many doctors don't realize the estrogens interfer with the Total Thyroid lab testing and still monitor with only the Free T4 and the Total T3. or only TSH.
Thank you for your time.
lildeb
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