Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 After my RAI I lost my sense of taste for a few months and had alot of soreness in my throat. I was tired for 4 months finally my endo prescribed cytomel along with the synthroid and i started to feel better. Just give it time Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 After my RAI I lost my sense of taste for a few months and had alot of soreness in my throat. I was tired for 4 months finally my endo prescribed cytomel along with the synthroid and i started to feel better. Just give it time Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 After my RAI I lost my sense of taste for a few months and had alot of soreness in my throat. I was tired for 4 months finally my endo prescribed cytomel along with the synthroid and i started to feel better. Just give it time Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 Hi Carol- I had RAI (200mCi) and I could hardly get out of bed for the first ten days. After that I started trying to get up and go in to work for a while, at the beginning I could only go in for an hour at a time. Gradually my days got longer, I was probably good 10-2 for two months or so. It took me a few more months before I could consider myself back to " normal " . But I can honestly say, " normal " sure felt good. Good Luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 Carol, > I had my RAI about 10 days ago now and my mouth is still sore. My > tongue almost " burns " , I have a open, sore area underneath with I'm > treating with triamcinolone cream, and I have no sense of taste. I couldn't taste anything for several months after RAI. My endo at the time (long since fired) insisted that it had nothing to do with my treatment and was " very unusual " . I don't think it happens to everyone, but it's by no means unheard of -- although most people seem to regain their sense of taste faster than I did. I did discover that I could taste really spicy foods during the time that everything else tasted like cardboard. If you have a Thai or Vietnamese restaurant in the neighborhood, this might be a good time to check it out :-). > I'm also finding that I'm still tired, even after starting the > synthroid. Did anyone find it took awhile to come out of being hypo? > Some days I feel better and think, 'yeah, this is passing' and then > others I crash. As a general rule, it takes the metabolism 6-8 weeks to stabilize after any change in T4 dosage. But if you were very hypo to start with (which we all are at RAI time) it can take longer. Feeling better one day and completely wasted the next day is pretty much par for the course. Over the next few weeks you should notice the ratio of good days to bad days increasing until one day you suddenly realize that you haven't crashed all week. Just take each day as it comes and don't try to push yourself too hard. On days when you have no energy, just REST. The bills, dirty laundry, unwalked dog, etc. will still be there waiting for you the next time you have a better day. Looking on the bright side, being hypo is a great excuse to put off doing housework! Hang in there; it DOES get better! ellen -- mailto:ellen@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 Carol, > I had my RAI about 10 days ago now and my mouth is still sore. My > tongue almost " burns " , I have a open, sore area underneath with I'm > treating with triamcinolone cream, and I have no sense of taste. I couldn't taste anything for several months after RAI. My endo at the time (long since fired) insisted that it had nothing to do with my treatment and was " very unusual " . I don't think it happens to everyone, but it's by no means unheard of -- although most people seem to regain their sense of taste faster than I did. I did discover that I could taste really spicy foods during the time that everything else tasted like cardboard. If you have a Thai or Vietnamese restaurant in the neighborhood, this might be a good time to check it out :-). > I'm also finding that I'm still tired, even after starting the > synthroid. Did anyone find it took awhile to come out of being hypo? > Some days I feel better and think, 'yeah, this is passing' and then > others I crash. As a general rule, it takes the metabolism 6-8 weeks to stabilize after any change in T4 dosage. But if you were very hypo to start with (which we all are at RAI time) it can take longer. Feeling better one day and completely wasted the next day is pretty much par for the course. Over the next few weeks you should notice the ratio of good days to bad days increasing until one day you suddenly realize that you haven't crashed all week. Just take each day as it comes and don't try to push yourself too hard. On days when you have no energy, just REST. The bills, dirty laundry, unwalked dog, etc. will still be there waiting for you the next time you have a better day. Looking on the bright side, being hypo is a great excuse to put off doing housework! Hang in there; it DOES get better! ellen -- mailto:ellen@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 Carol, The problems with taste ect are normal and as I recall can take several weeks to regain my sense of taste. It is also not unusual to get a metalic ( tinish) taste in your mouth so do not fret if this happens. It also has not been long enough to feel back to normal. Sorry.. On Synthroid alone, it can take weeks. Are you taking cytomel short- term to help? (Someone who saves posts would have Dr. Ain's recommendations on this usage) If hypo hits you like it does me, it take even longer to get your stamina back. Sorry, hang in there because you will feel better and you will get your sense of taste back. Bekki in TX; tt & rai'89; rai 7/00; mid-neck dissection > 2/01; 5/01-finished 6 weeks EBR > Hi thyca buds, > > I had my RAI about 10 days ago now and my mouth is still sore. My > tongue almost " burns " , I have a open, sore area underneath with I'm > treating with triamcinolone cream, and I have no sense of taste. My > question is, I guess, I assume others might have had the same > problems. About how long does this last? > > I'm also finding that I'm still tired, even after starting the > synthroid. Did anyone find it took awhile to come out of being hypo? > Some days I feel better and think, 'yeah, this is passing' and then > others I crash. > > Any thoughts are gratefully appreciated. > > Carol > TT 1/15/01 > pap with lymph involvement > RAI 5/20/01 150 mCi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 michaluk51@... wrote: > I had my RAI about 10 days ago now and my mouth is still sore. My > tongue almost " burns " , I have a open, sore area underneath with I'm > treating with triamcinolone cream, and I have no sense of taste. My > question is, I guess, I assume others might have had the same > problems. About how long does this last? The loss of sense of taste is quite normal (and those who do taste anything, sometimes have a nasty, salty, metallic taste). Normal taste seems to come back very gradually, over about a month's time period -- at least that is my experience. > I'm also finding that I'm still tired, even after starting the > synthroid. Did anyone find it took awhile to come out of being hypo? > Some days I feel better and think, 'yeah, this is passing' and then > others I crash. Here's a repost from Dr. Ain on getting back up to speed: *** Dear ThyCa members: The half-life of levothyroxine is 7 days. It takes from 6-8 half-lives, when resuming any medication, for the level of the medication to reach its ultimate steady-state level in the body. For levothyroxine (Synthroid, Levothroid, Levoxyl, etc.), this means that it will take fully 6-8 WEEKS for the levels to come back to normal. When stopping levothyroxine, the curve is identical although reversed. That is why the TSH level does not typically become sufficiently elevated for I-131 scans or therapy until 6 weeks after stopping the medication. *** Good luck on getting back to normal....it's also one of those 'gradual' things. Marilyn (dx '94-pap w/lung metastases - 5 pos scans/435mCi's - scans 6 & 7 clean) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 michaluk51@... wrote: > I had my RAI about 10 days ago now and my mouth is still sore. My > tongue almost " burns " , I have a open, sore area underneath with I'm > treating with triamcinolone cream, and I have no sense of taste. My > question is, I guess, I assume others might have had the same > problems. About how long does this last? The loss of sense of taste is quite normal (and those who do taste anything, sometimes have a nasty, salty, metallic taste). Normal taste seems to come back very gradually, over about a month's time period -- at least that is my experience. > I'm also finding that I'm still tired, even after starting the > synthroid. Did anyone find it took awhile to come out of being hypo? > Some days I feel better and think, 'yeah, this is passing' and then > others I crash. Here's a repost from Dr. Ain on getting back up to speed: *** Dear ThyCa members: The half-life of levothyroxine is 7 days. It takes from 6-8 half-lives, when resuming any medication, for the level of the medication to reach its ultimate steady-state level in the body. For levothyroxine (Synthroid, Levothroid, Levoxyl, etc.), this means that it will take fully 6-8 WEEKS for the levels to come back to normal. When stopping levothyroxine, the curve is identical although reversed. That is why the TSH level does not typically become sufficiently elevated for I-131 scans or therapy until 6 weeks after stopping the medication. *** Good luck on getting back to normal....it's also one of those 'gradual' things. Marilyn (dx '94-pap w/lung metastases - 5 pos scans/435mCi's - scans 6 & 7 clean) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 michaluk51@... wrote: > I had my RAI about 10 days ago now and my mouth is still sore. My > tongue almost " burns " , I have a open, sore area underneath with I'm > treating with triamcinolone cream, and I have no sense of taste. My > question is, I guess, I assume others might have had the same > problems. About how long does this last? The loss of sense of taste is quite normal (and those who do taste anything, sometimes have a nasty, salty, metallic taste). Normal taste seems to come back very gradually, over about a month's time period -- at least that is my experience. > I'm also finding that I'm still tired, even after starting the > synthroid. Did anyone find it took awhile to come out of being hypo? > Some days I feel better and think, 'yeah, this is passing' and then > others I crash. Here's a repost from Dr. Ain on getting back up to speed: *** Dear ThyCa members: The half-life of levothyroxine is 7 days. It takes from 6-8 half-lives, when resuming any medication, for the level of the medication to reach its ultimate steady-state level in the body. For levothyroxine (Synthroid, Levothroid, Levoxyl, etc.), this means that it will take fully 6-8 WEEKS for the levels to come back to normal. When stopping levothyroxine, the curve is identical although reversed. That is why the TSH level does not typically become sufficiently elevated for I-131 scans or therapy until 6 weeks after stopping the medication. *** Good luck on getting back to normal....it's also one of those 'gradual' things. Marilyn (dx '94-pap w/lung metastases - 5 pos scans/435mCi's - scans 6 & 7 clean) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 --- michaluk51@y... wrote: >>>Hi thyca buds, I'm also finding that I'm still tired, even after starting the synthroid. Did anyone find it took awhile to come out of being hypo? Some days I feel better and think, 'yeah, this is passing' and then others I crash. Any thoughts are gratefully appreciated. Carol ++++++++++++++++++ Hi Carol, It has been my personal experience that it takes more than 10 days to get out of the hypo-fog. You should notice gradual improvement with each day. If I overdo, I am exhausted. So be kind to yourself, take it easy and soon you will feel better. ===== from NE Ohio 3/25/65 tt Papillary ThyCa w/lymph node mets HPTH 3 days post radical tt 3/25/82 Recurrence in neck/ & R chest Tx w/RAI 131 176 mCi hx kidney stones __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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