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Wondering about my RAI
kappy1952 posted:
Had RAI treatment after 15 months of hyperthyroidism that didn't respond well to meds. At time of RAI, I was sort of in normal range. Two weeks after treatment thyroid was hypo but dr kept me on methimazole anyway. Six weeks after that, my thyroid was way hypo with a reading of 95! Went on levoxyl, and have been on it ever since. Doc will not take me off meds. My understanding was that the RAI was going to balance out my thyroid with a great chance that my thyroid would go hypo eventually. But it seems my doc is assuming that I will be permanently hypo. Shouldn't the doc take me off meds to see how my thyroid fares on its own?
6 Replies |Watch This Discussion | Report This| Share this:Wondering about my RAIHad RAI treatment after 15 months of hyperthyroidism that didn't respond well to meds. At time of RAI, I was sort of in normal range. Two weeks after treatment thyroid was hypo but dr kept me on methimazole anyway. Six weeks after that, my thyroid was way hypo with a reading of 95! Went on levoxyl, and have been on it ever since. Doc will not take me off meds. My understanding was that the RAI was going to balance out my thyroid with a great chance that my thyroid would go hypo <i>eventually</i>. But it seems my doc is assuming that I will be permanently hypo. Shouldn't the doc take me off meds to see how my thyroid fares on its own?
DOGDANCING_TCOS responded:
RAI is not an exact science. The hope is to damage enough of the thyroid to keep you level. BUT the REALITY is usually it damages it too much/kills it and you will remain on thyroid replacement for the rest of your life.
Your doctor is correct in keeping you on the med. He is not assuming you will be perm hypo...that was the intent of the RAI...to make you perm hypo.
Your thyroid has been damaged by radiation and no longer functioning. It should have been explained to you that most people under go RAI and are on replacement hormone for life. Very VERY few hit that magic jackpot of damaging JUST enough to no longer need meds.
You will need to have a least yearly TSH and FT-4 levels drawn to keep an eye on how you are doing. The doctor will adjust your dose accordingly.
Peace be the journey
Paja
(Graves, RAI 2008, 75 mcg levoxyl)
Your doctor is correct in keeping you on the med. He is not assuming you will be perm hypo...that was the intent of the RAI...to make you perm hypo.
Your thyroid has been damaged by radiation and no longer functioning. It should have been explained to you that most people under go RAI and are on replacement hormone for life. Very VERY few hit that magic jackpot of damaging JUST enough to no longer need meds.
You will need to have a least yearly TSH and FT-4 levels drawn to keep an eye on how you are doing. The doctor will adjust your dose accordingly.
Peace be the journey
Paja
(Graves, RAI 2008, 75 mcg levoxyl)
Report This| Share this:Wondering about my RAIRAI is not an exact science. The hope is to damage enough of the thyroid to keep you level. BUT the REALITY is usually it damages it too much/kills it and you will remain on thyroid replacement for the rest of your life.<br /><br />Your doctor is correct in keeping you on the med. He is not assuming you will be perm hypo...that was the intent of the RAI...to make you perm hypo.<br /><br />Your thyroid has been damaged by radiation and no longer functioning. It should have been explained to you that most people under go RAI and are on replacement hormone for life. Very VERY few hit that magic jackpot of damaging JUST enough to no longer need meds.<br /><br />You will need to have a least yearly TSH and FT-4 levels drawn to keep an eye on how you are doing. The doctor will adjust your dose accordingly.<br /><br />Peace be the journey<br /><br />Paja <br />(Graves, RAI 2008, 75 mcg levoxyl)
kappy1952 replied to DOGDANCING_TCOS's response:
Thank you for the info. I just thought we could see how things looked after the RAI without meds, realizing that I probably would end up on meds some day.
One big issue I have after that RAI is that I have very little taste sensation now. It declined after I had the treatment and over a year later, it is still very much diminished. Is this common?
One big issue I have after that RAI is that I have very little taste sensation now. It declined after I had the treatment and over a year later, it is still very much diminished. Is this common?
Report This| Share this:Wondering about my RAIThank you for the info. I just thought we could see how things looked after the RAI without meds, realizing that I probably would end up on meds some day. <br /> <br />One big issue I have after that RAI is that I have very little taste sensation now. It declined after I had the treatment and over a year later, it is still very much diminished. Is this common?
DOGDANCING_TCOS replied to kappy1952's response:
You know, when I researched RAI stuff prior to mine, I found NOTHING out there that indicated it could cause loss of taste.
AFTER I lost my taste and started googling it, I found tons of people reporting it. I don not see why the medical profession refuses to acknowledge it as a possible side effect of RAI.
I lost mine 4 days into RAI and it has never returned. (RAI 2008).
Spending a few seconds smelling the food before I put in in my mouth helps me to trick my mind into thinking I can taste it.
I can taste the mint type life savors so when I need to taste something I suck on those. Same thing with chocolate with no high fructose corn syrup in it.
Its been a strange ride. Comfort food is no longer comforting due to lack of taste. etc.
I have taken to eating "braille" food, ie I eat for texture rather then taste.
This side effect is an unpleasant one, and the doctors should be honest about it and tell people.
Paja
AFTER I lost my taste and started googling it, I found tons of people reporting it. I don not see why the medical profession refuses to acknowledge it as a possible side effect of RAI.
I lost mine 4 days into RAI and it has never returned. (RAI 2008).
Spending a few seconds smelling the food before I put in in my mouth helps me to trick my mind into thinking I can taste it.
I can taste the mint type life savors so when I need to taste something I suck on those. Same thing with chocolate with no high fructose corn syrup in it.
Its been a strange ride. Comfort food is no longer comforting due to lack of taste. etc.
I have taken to eating "braille" food, ie I eat for texture rather then taste.
This side effect is an unpleasant one, and the doctors should be honest about it and tell people.
Paja
Report This| Share this:Wondering about my RAIYou know, when I researched RAI stuff prior to mine, I found NOTHING out there that indicated it could cause loss of taste.<br /><br />AFTER I lost my taste and started googling it, I found tons of people reporting it. I don not see why the medical profession refuses to acknowledge it as a possible side effect of RAI. <br /><br />I lost mine 4 days into RAI and it has never returned. (RAI 2008).<br /><br />Spending a few seconds smelling the food before I put in in my mouth helps me to trick my mind into thinking I can taste it.<br /><br />I can taste the mint type life savors so when I need to taste something I suck on those. Same thing with chocolate with no high fructose corn syrup in it.<br /><br />Its been a strange ride. Comfort food is no longer comforting due to lack of taste. etc.<br /><br />I have taken to eating "braille" food, ie I eat for texture rather then taste. <br /><br />This side effect is an unpleasant one, and the doctors should be honest about it and tell people. <br /><br />Paja
kappy1952 replied to DOGDANCING_TCOS's response:
Before having the RAI a year ago, I asked my endo doc about side effects. He said there was only a possible mild sore throat .Nothing was said about the taste. When I mentioned it after the treatment, he said it sometimes happens, but "It should come back." Yeah, the doctors should warn about that. It is an issue affecting life quality! I, too, taste "by memory." I just remember what things taste like. My sense of smell hasn't been all that acute either, since the RAI.
Report This| Share this:Wondering about my RAIBefore having the RAI a year ago, I asked my endo doc about side effects. He said there was only a possible mild sore throat .Nothing was said about the taste. When I mentioned it after the treatment, he said it sometimes happens, but "It should come back." Yeah, the doctors should warn about that. It is an issue affecting life quality! I, too, taste "by memory." I just remember what things taste like. My sense of smell hasn't been all that acute either, since the RAI.
DOGDANCING_TCOS replied to kappy1952's response:
Its tragic we are not warned of this ahead of time. I can't do simple things people take for granted. I can't sniff the food/taste it to tell if its bad. I have inadvertently given my children spoiled stuff. It breaks my heart.
I've eaten things and had my husband come along a few min later and say, I tossed out the ____ it tastes funny.
The worst story I have come across is a professional chief who was not told ahead of time. It ruined his career.
Taste sure didn't seem like such a big deal before, like if you had to pick a sense to loose which one would you choose type of choice. Its very hard to deal with smelling delisous stuff and not being able to follow it with the taste connection.
I have dealt with it like I said "braille" food and eating for the hot/cold sensation in my mouth/stomach.
And I retrained my brain with this simple mantra. "this is the way food is supose to taste."
I've eaten things and had my husband come along a few min later and say, I tossed out the ____ it tastes funny.
The worst story I have come across is a professional chief who was not told ahead of time. It ruined his career.
Taste sure didn't seem like such a big deal before, like if you had to pick a sense to loose which one would you choose type of choice. Its very hard to deal with smelling delisous stuff and not being able to follow it with the taste connection.
I have dealt with it like I said "braille" food and eating for the hot/cold sensation in my mouth/stomach.
And I retrained my brain with this simple mantra. "this is the way food is supose to taste."
Report This| Share this:Wondering about my RAIIts tragic we are not warned of this ahead of time. I can't do simple things people take for granted. I can't sniff the food/taste it to tell if its bad. I have inadvertently given my children spoiled stuff. It breaks my heart. <br /><br />I've eaten things and had my husband come along a few min later and say, I tossed out the ____ it tastes funny. <br /><br /><br /><br />The worst story I have come across is a professional chief who was not told ahead of time. It ruined his career. <br /><br />Taste sure didn't seem like such a big deal before, like if you had to pick a sense to loose which one would you choose type of choice. Its very hard to deal with smelling delisous stuff and not being able to follow it with the taste connection.<br /><br />I have dealt with it like I said "braille" food and eating for the hot/cold sensation in my mouth/stomach.<br /><br />And I retrained my brain with this simple mantra. "this is the way food is supose to taste."
kappy1952 replied to DOGDANCING_TCOS's response:
Yup, I hear you!
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