Hearing/Vision Loss after I-131 treatment
Has anyone else experienced similar symptoms? I'm told the hearing loss is permanent, due to nerve damage. I am going to have to consider hearing aids in order to continue to function in my job. I'm being monitored by my optometrist, who can't say at this point if the vision deterioration is permanent or not.
All of the doctors I dealt with (head and neck surgeon, endocrinologist and nuclear surgeon) all told me that thyroid cancer was "the kind to get if you're going to get cancer." NONE of them mentioned anything like what I'm experiencing as potential side effects. Anyone else going through anything similar?
Comments
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Following a recent TT, I had RAI 131 one week ago today.
At this writing I am experiencing both foggy vision and loss of taste...first noted when I wondered why the images on my computer were suddenly out-of-focus. The effect on vision is similar to that of a swimmer who has been in a heavily chrorinated pool.
I made a point of specifically addressing any possible risk or side-effects before RAI with my surgeon, my endocrinologist, and my nuclear medicine physician. All three responded that there was nothing to worry about, especially so in my case, since the RAI dosage was considered "low" (100).
There has been no examination of my eyes since the onset of this "symptom" is so new.
At this point I have taken a very dim view (no pun intended) of the cavalier manner in which my inquiry was dismissed in light of the results to date. I am hopeful that both the vision and the loss of taste are temporary. Only time will tell...since the doctors certainly did not!
It would be nice if any member of the medical profession that reads this "whiner's" column would be forthright in discussing such possible side effects in light of the reality.0 -
Usuallyfreshwater said:Following a recent TT, I had RAI 131 one week ago today.
At this writing I am experiencing both foggy vision and loss of taste...first noted when I wondered why the images on my computer were suddenly out-of-focus. The effect on vision is similar to that of a swimmer who has been in a heavily chrorinated pool.
I made a point of specifically addressing any possible risk or side-effects before RAI with my surgeon, my endocrinologist, and my nuclear medicine physician. All three responded that there was nothing to worry about, especially so in my case, since the RAI dosage was considered "low" (100).
There has been no examination of my eyes since the onset of this "symptom" is so new.
At this point I have taken a very dim view (no pun intended) of the cavalier manner in which my inquiry was dismissed in light of the results to date. I am hopeful that both the vision and the loss of taste are temporary. Only time will tell...since the doctors certainly did not!
It would be nice if any member of the medical profession that reads this "whiner's" column would be forthright in discussing such possible side effects in light of the reality.
Most people get their taste back after a few months, I don't know about the vision but it does really make me angry that they don't let people know about these side effects up front.
I am really glad I came here first.0 -
Me toojcvolt said:Usually
Most people get their taste back after a few months, I don't know about the vision but it does really make me angry that they don't let people know about these side effects up front.
I am really glad I came here first.
Hi there,
I did experience loss of taste and I too was not told this was going to happen. When I mention it to the doc, he noted that not everybody gets side effects, therefore, they do not tell us. Well, I think they are too lazy and do not want to take extra time explaining what we MIGHT experience. Also, I have not had my eyes checked in 4 years and my RAI was 2 years ago. I did not even realize my blurry vision could have came from that. I was blaming it on medications I was taking for nerve damage(in my leg after thyroid surgery-another story). I just had my eyes checked this weekend and they are considerable worse. I really could not afford to see a doctor sonner. My left eye which was fine before surgery is having problems and my right eye is 20/200--what. I am not even sure they go that high. As for the hearing loss, I have gone to an ENT and ear specialist who both told me my hearing is fine. However, I am experiencing very loud bangging in my left ear. It is not all the time but rather bothersome. Are you on Synthroid yet? I notice the lower the Synthroid dose, the less of the side effects(anxious, sweating,etc). Are you on any other meds that might be causing this?
ME20 -
No Tastefreshwater said:Following a recent TT, I had RAI 131 one week ago today.
At this writing I am experiencing both foggy vision and loss of taste...first noted when I wondered why the images on my computer were suddenly out-of-focus. The effect on vision is similar to that of a swimmer who has been in a heavily chrorinated pool.
I made a point of specifically addressing any possible risk or side-effects before RAI with my surgeon, my endocrinologist, and my nuclear medicine physician. All three responded that there was nothing to worry about, especially so in my case, since the RAI dosage was considered "low" (100).
There has been no examination of my eyes since the onset of this "symptom" is so new.
At this point I have taken a very dim view (no pun intended) of the cavalier manner in which my inquiry was dismissed in light of the results to date. I am hopeful that both the vision and the loss of taste are temporary. Only time will tell...since the doctors certainly did not!
It would be nice if any member of the medical profession that reads this "whiner's" column would be forthright in discussing such possible side effects in light of the reality.
Hi
I had a High dose fo I131 20th May, but stayed on my Thyroxine.
I too has no taste a week after, but its back now, it didnt last long, my eyes have been ok though, the paper work I was given before did state eyesight may be affected but I like in the UK so I am not sure what is different.
I hope all comes back soon
Helen0 -
Blurred Vision Post Tghyroidectomey/RAI
Post surgery, while off Cytomel awaiting scan and RI treatment, noticed blurred vision. Had crazy nightmares and couldn't sleep more than 15 minutes at a time.Following I-131 pill, noticed eyes started tearing and vision still blurry. I'm amazed at how little info I was given pre surgery and RAI treatment about the treatment and effects of no thyroid-- attitude seemed to be "it's only papillary cancer, get it out, get it done... consider yourself lucky..."0 -
Fortunately for new folksRambrewster said:Blurred Vision Post Tghyroidectomey/RAI
Post surgery, while off Cytomel awaiting scan and RI treatment, noticed blurred vision. Had crazy nightmares and couldn't sleep more than 15 minutes at a time.Following I-131 pill, noticed eyes started tearing and vision still blurry. I'm amazed at how little info I was given pre surgery and RAI treatment about the treatment and effects of no thyroid-- attitude seemed to be "it's only papillary cancer, get it out, get it done... consider yourself lucky..."
More doctors are saying the the risks do not outweigh the benefits of RAI and are moving away from it.
Here is a good article if you are interested.
http://jnm.snmjournals.org/cgi/content/full/49/8/13950 -
Thanks...Rambrewster said:Blurred Vision Post Tghyroidectomey/RAI
Post surgery, while off Cytomel awaiting scan and RI treatment, noticed blurred vision. Had crazy nightmares and couldn't sleep more than 15 minutes at a time.Following I-131 pill, noticed eyes started tearing and vision still blurry. I'm amazed at how little info I was given pre surgery and RAI treatment about the treatment and effects of no thyroid-- attitude seemed to be "it's only papillary cancer, get it out, get it done... consider yourself lucky..."
Now I can be more cautious and aware of the rude-awakening side affects. Sure I'm friggin' scared of everything- more than ever after reading this topic.0 -
vision/hearingLBelle said:Thanks...
Now I can be more cautious and aware of the rude-awakening side affects. Sure I'm friggin' scared of everything- more than ever after reading this topic.
I am waiting to get the RAI treatment on Nov 11. I am a little scared now, but I'm hoping that it is what I should do. My eyes are already out of focus, but I think it is being super hypothyroid.
So far my hearing is o.k., but my brain has a hard time focusing as well.
I guess I keep thinking, if I did not have cancer I would not have to survive the treatment. : )0 -
I would trust
Hmmm, I would definitely trust the audiologist there. I wish you the best of luck, and for your sake I hope it isn't permanent.0 -
My vision is blurring as wellpoppit said:vision/hearing
I am waiting to get the RAI treatment on Nov 11. I am a little scared now, but I'm hoping that it is what I should do. My eyes are already out of focus, but I think it is being super hypothyroid.
So far my hearing is o.k., but my brain has a hard time focusing as well.
I guess I keep thinking, if I did not have cancer I would not have to survive the treatment. : )
Told by doctor to wait 6 weeks or more after RAI to get new glasses and get eyes checked! Please update us when you can!0 -
a little off isnt my worrymillermax10 said:I would trust
Hmmm, I would definitely trust the audiologist there. I wish you the best of luck, and for your sake I hope it isn't permanent.
for myself i am probaly in a unique situation
i have recently had 90% of my hearing restored to my right ear and about 1 1/2 month after RI treatment i will go to surgery to repair the other ear so i am not worried about loosing a bit of hearing. (if you want to know how much diffrence put in ear plugs and then put on noise canceling headphone (decent ones) go like that for an hour or 2 then take one ear off and remove that earplug thats the amount i have recovered.
the Eye docter told me that when the thyroid starts to go bad that it can cause massive changes to your eyesite and recomended i get eye checks every 6 months for the first 2 years then go back to 1 to 2 years. if the changes were not great.
so i dont know how much the vision change is from the rest of the thyroid going do to the radiation that might affect your vision (and that may be why they dont know)
most medicine is guesswork. and everything has side effects.
on the ear surgery type i got there is about a 1% chance that 5-10 days after the surgery that i could have completly lost ALL hearing in that ear perminatly. so again loosing a little isnt a worry of mine.
this site has definatly changed my attitued on some aspects but i feel more informed.
i have also been makeing a checklist of questions to ask the DR's and such i have sent them a message or two and they responded and i am all go and ready as i will be for the two uptake doses on the 3rd and 4th and then hopefully on the 5th i will get my thearopy dose if not it will be on the 6th. So probaly wont be able to post on the 5th and 6th for some reason.
good luck to all of us0 -
I will be seeing my opthomologist in the summernasher said:a little off isnt my worry
for myself i am probaly in a unique situation
i have recently had 90% of my hearing restored to my right ear and about 1 1/2 month after RI treatment i will go to surgery to repair the other ear so i am not worried about loosing a bit of hearing. (if you want to know how much diffrence put in ear plugs and then put on noise canceling headphone (decent ones) go like that for an hour or 2 then take one ear off and remove that earplug thats the amount i have recovered.
the Eye docter told me that when the thyroid starts to go bad that it can cause massive changes to your eyesite and recomended i get eye checks every 6 months for the first 2 years then go back to 1 to 2 years. if the changes were not great.
so i dont know how much the vision change is from the rest of the thyroid going do to the radiation that might affect your vision (and that may be why they dont know)
most medicine is guesswork. and everything has side effects.
on the ear surgery type i got there is about a 1% chance that 5-10 days after the surgery that i could have completly lost ALL hearing in that ear perminatly. so again loosing a little isnt a worry of mine.
this site has definatly changed my attitued on some aspects but i feel more informed.
i have also been makeing a checklist of questions to ask the DR's and such i have sent them a message or two and they responded and i am all go and ready as i will be for the two uptake doses on the 3rd and 4th and then hopefully on the 5th i will get my thearopy dose if not it will be on the 6th. So probaly wont be able to post on the 5th and 6th for some reason.
good luck to all of us
So I will be asking him as well about vision. Yesterday I was having a bit of ringing in the ears, and feeling like there was fluid in my ears. But today it is gone....and it is the allergy season here! Not sure what was causing it. I do know that my distance vision has changed and that I do need new glasses!0 -
Good luck with your therapy dose!!nasher said:a little off isnt my worry
for myself i am probaly in a unique situation
i have recently had 90% of my hearing restored to my right ear and about 1 1/2 month after RI treatment i will go to surgery to repair the other ear so i am not worried about loosing a bit of hearing. (if you want to know how much diffrence put in ear plugs and then put on noise canceling headphone (decent ones) go like that for an hour or 2 then take one ear off and remove that earplug thats the amount i have recovered.
the Eye docter told me that when the thyroid starts to go bad that it can cause massive changes to your eyesite and recomended i get eye checks every 6 months for the first 2 years then go back to 1 to 2 years. if the changes were not great.
so i dont know how much the vision change is from the rest of the thyroid going do to the radiation that might affect your vision (and that may be why they dont know)
most medicine is guesswork. and everything has side effects.
on the ear surgery type i got there is about a 1% chance that 5-10 days after the surgery that i could have completly lost ALL hearing in that ear perminatly. so again loosing a little isnt a worry of mine.
this site has definatly changed my attitued on some aspects but i feel more informed.
i have also been makeing a checklist of questions to ask the DR's and such i have sent them a message or two and they responded and i am all go and ready as i will be for the two uptake doses on the 3rd and 4th and then hopefully on the 5th i will get my thearopy dose if not it will be on the 6th. So probaly wont be able to post on the 5th and 6th for some reason.
good luck to all of us
Hope that it turns out well with minimal side effects!0 -
Be preparedpoppit said:vision/hearing
I am waiting to get the RAI treatment on Nov 11. I am a little scared now, but I'm hoping that it is what I should do. My eyes are already out of focus, but I think it is being super hypothyroid.
So far my hearing is o.k., but my brain has a hard time focusing as well.
I guess I keep thinking, if I did not have cancer I would not have to survive the treatment. : )
I just had my 131 treatment 10 days ago and it was harder to manage than I was lead to believe it would be. Of course everyone responds differently.
For me it has been 13 days (including the tracer day) of nausea, feeling shaky, trouble walking at times (slight dizzy feeling), ears ringing etc. I have been having trouble with my eyes but never tied it to the treatment or surgeries. That is helpful, I will follow up with my doc on that.
What I can say, is plan to take a full week off work. Make your home life as easy as possible. Be ready to need care and comfort from afar. And be sure to eat and drink regularly to keep your body going. That was hard for me since I felt so sick. It is important to move the I-131 out of your body as quickly as possible.
Also, think about using Biotene (tooth paste and mouth wash) to help protect your teeth/mouth (I have been having teeth sensitivity and pain). Another survivor found this product really helped her with teeth and re-establish the proper bacteria for her mouth to heal. I will let you know how it works - I just started.
Good luck. The whole process is so scary. Know you are not alone on the journey. I wish you an easy trip!!0 -
I-131
I had problems with vision and hearing after the I-131 pill as well. My hearing seems to be fine now. I took the pill at the end of Sept of this year. My vision is still messed up in my left eye but I think that is more from the neck dissection and the nerves that were affected than the pill.0 -
this is me as wellfreshwater said:Following a recent TT, I had RAI 131 one week ago today.
At this writing I am experiencing both foggy vision and loss of taste...first noted when I wondered why the images on my computer were suddenly out-of-focus. The effect on vision is similar to that of a swimmer who has been in a heavily chrorinated pool.
I made a point of specifically addressing any possible risk or side-effects before RAI with my surgeon, my endocrinologist, and my nuclear medicine physician. All three responded that there was nothing to worry about, especially so in my case, since the RAI dosage was considered "low" (100).
There has been no examination of my eyes since the onset of this "symptom" is so new.
At this point I have taken a very dim view (no pun intended) of the cavalier manner in which my inquiry was dismissed in light of the results to date. I am hopeful that both the vision and the loss of taste are temporary. Only time will tell...since the doctors certainly did not!
It would be nice if any member of the medical profession that reads this "whiner's" column would be forthright in discussing such possible side effects in light of the reality.I had my thyroid and a lymph node removed, and had the Iodine-131 done and my eyesight is getting worse I think...or does it get worse before it gets better? Should I wait or should I go have my eyes examined? Me a newbie and my follow up visit is this Tuesday....yesterday I had a full body scan to see if the cancer is gone or if it spread to other organs...and does it spread to only closer organs or can it attack any organ? I will let ya know what my doc says Tuesday, fingers crossed....and prayers to all who are dealing with any type of cancer and to their families n friends as well. Toodles, Aggie918 from Texas
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DittoRambrewster said:Blurred Vision Post Tghyroidectomey/RAI
Post surgery, while off Cytomel awaiting scan and RI treatment, noticed blurred vision. Had crazy nightmares and couldn't sleep more than 15 minutes at a time.Following I-131 pill, noticed eyes started tearing and vision still blurry. I'm amazed at how little info I was given pre surgery and RAI treatment about the treatment and effects of no thyroid-- attitude seemed to be "it's only papillary cancer, get it out, get it done... consider yourself lucky..."That was me. Me a newbie follow up appointment is Tuesday and no one told me about the iodine free diet before the Iodine-131 pill and I was still radioactive ten days after, last night was my frst night back in my bedroom with my husband...I had myself scanned to see if it was out of my system seven days later and it was not....I was still radioactive. I find it alarming how little concerned they were about putting my husband an my dogs in danger. Rambrewster how are you today? I hope your vision came back and is not a permanant thing. Please reply. God Bless, Aggie918
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