Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 Debbi - Glad to have you back with the group, but I'm sorry you're having a hard time. I know this is obvious, but when was the last time you have your blood tested? It's only a few months since you've been on meds, and it's very possible that you are still not fully suppressed, or perhaps you need a small dosage adjustment. It's not unusual for it to take 6 months or longer to get up to speed the first time around after TT. Hopefully someone else will have some other concrete suggestions. Please let us know how it goes. - NYC (TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; current TSH ~.06 on .225 levothyroxine) djkoplen@... wrote: > Hi Thyca Group, > > It's been a while since I've posted. I hope everyone I shared online time > with this past summer is getting along alright now. Welcome to all new > members and best of luck to you. > > I had my TT in July, RAI in late August, and have been back on Levoxyl since > Labor Day. The reason I am writing is because I still don't feel back to > normal. It is particularly obvious on days when I didn't get a full night's > rest the night before. I experience motion sickness more frequently (I have > a 35 minute subway ride to and from work and get nauseous almost half the > time). I cannot warm myself at night, even with the thermostat up to 76 > degrees. I sleep in long flannel pajamas and wear a fleece hat and booties, > along with many quilts and blankets. I get searing, flashing pains in my > head...and often feel the sensation of pressure inside my skull trying to > push outward, especially around my temples. I have also gained some stubborn > weight-in spite of a healthy diet and a fairly consistent exercise routine > that includes plenty of weight training and cardio. > > OK, enough whining..but you get the idea. Has anybody else experienced any > of these symptoms post TT and once back on meds? > > Frustrated in DC, > Debbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 A strong second on getting a new thyroid panel. I had very similar symptoms as you (cold, gaining weight on a 400 calorie diet and headaches - also brain fog). I got a test, and when it came back hypo, I changed Endos and am doing *much* better! > > > Hi Thyca Group, > > > > It's been a while since I've posted. I hope everyone I shared online time > > with this past summer is getting along alright now. Welcome to all new > > members and best of luck to you. > > > > I had my TT in July, RAI in late August, and have been back on Levoxyl since > > Labor Day. The reason I am writing is because I still don't feel back to > > normal. It is particularly obvious on days when I didn't get a full night's > > rest the night before. I experience motion sickness more frequently (I have > > a 35 minute subway ride to and from work and get nauseous almost half the > > time). I cannot warm myself at night, even with the thermostat up to 76 > > degrees. I sleep in long flannel pajamas and wear a fleece hat and booties, > > along with many quilts and blankets. I get searing, flashing pains in my > > head...and often feel the sensation of pressure inside my skull trying to > > push outward, especially around my temples. I have also gained some stubborn > > weight-in spite of a healthy diet and a fairly consistent exercise routine > > that includes plenty of weight training and cardio. > > > > OK, enough whining..but you get the idea. Has anybody else experienced any > > of these symptoms post TT and once back on meds? > > > > Frustrated in DC, > > Debbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 Hi , Glad to see you are still with the group! I should have mentioned that I am going for a blood test next week. My fear is that the doc will say all levels are where they should be...then what? These are hypo symptoms, aren't they? I will be surprised if my TSH is not up a bit. Debbi dx pap thyca 5/01 TT 7/01 2.5 cm tumor/no spread Levoxyl 150 RAI 29.9 8/01 > > > Hi Thyca Group, > > > > It's been a while since I've posted. I hope everyone I shared online time > > with this past summer is getting along alright now. Welcome to all new > > members and best of luck to you. > > > > I had my TT in July, RAI in late August, and have been back on Levoxyl since > > Labor Day. The reason I am writing is because I still don't feel back to > > normal. It is particularly obvious on days when I didn't get a full night's > > rest the night before. I experience motion sickness more frequently (I have > > a 35 minute subway ride to and from work and get nauseous almost half the > > time). I cannot warm myself at night, even with the thermostat up to 76 > > degrees. I sleep in long flannel pajamas and wear a fleece hat and booties, > > along with many quilts and blankets. I get searing, flashing pains in my > > head...and often feel the sensation of pressure inside my skull trying to > > push outward, especially around my temples. I have also gained some stubborn > > weight-in spite of a healthy diet and a fairly consistent exercise routine > > that includes plenty of weight training and cardio. > > > > OK, enough whining..but you get the idea. Has anybody else experienced any > > of these symptoms post TT and once back on meds? > > > > Frustrated in DC, > > Debbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 > Glad to see you are still with the group! it's not so easy to get rid of me :-) > I should have mentioned that I am going for a blood test next week. > My fear is that the doc will say all levels are where they should > be...then what? I certainly understand that fear; I get it all the time. However, try to put that out of your mind until you know for sure what your numbers are. If your numbers are all fine, get your endo to do some imaginative thinking and come up with something. (T3/T4 combo is one possibility; many doctors, including Drs. Ain and Rolla, think T3 belongs only in the period immediately before and after scanning, but many people report feeling a world of difference by taking the combination). > These are hypo symptoms, aren't they? I will be surprised if my TSH > is not up a bit. Yes, indeed, they sure sound like hypo symptoms to me. I hope it turns out to be that your TSH is elevated, for a simple solution. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 , thanks for the reply, my last blood test was 8 months ago, I go in for checkup in two weeks Re: Still Don't Feel Good > Debbi - > > Glad to have you back with the group, but I'm sorry you're having a hard time. > > I know this is obvious, but when was the last time you have your blood tested? > > It's only a few months since you've been on meds, and it's very possible that you are still not fully suppressed, or perhaps you need a small dosage adjustment. > It's not unusual for it to take 6 months or longer to get up to speed the first time around after TT. > > Hopefully someone else will have some other concrete suggestions. > > Please let us know how it goes. > > - > NYC (TT 2/99 dx pap/foll; RAI 100 mCi 3/99 & 4/00; current TSH ~.06 on ..225 levothyroxine) > > > djkoplen@... wrote: > > > Hi Thyca Group, > > > > It's been a while since I've posted. I hope everyone I shared online time > > with this past summer is getting along alright now. Welcome to all new > > members and best of luck to you. > > > > I had my TT in July, RAI in late August, and have been back on Levoxyl since > > Labor Day. The reason I am writing is because I still don't feel back to > > normal. It is particularly obvious on days when I didn't get a full night's > > rest the night before. I experience motion sickness more frequently (I have > > a 35 minute subway ride to and from work and get nauseous almost half the > > time). I cannot warm myself at night, even with the thermostat up to 76 > > degrees. I sleep in long flannel pajamas and wear a fleece hat and booties, > > along with many quilts and blankets. I get searing, flashing pains in my > > head...and often feel the sensation of pressure inside my skull trying to > > push outward, especially around my temples. I have also gained some stubborn > > weight-in spite of a healthy diet and a fairly consistent exercise routine > > that includes plenty of weight training and cardio. > > > > OK, enough whining..but you get the idea. Has anybody else experienced any > > of these symptoms post TT and once back on meds? > > > > Frustrated in DC, > > Debbi > > > > For more information regarding thyroid cancer visit www.thyca.org. If you do not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email to thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 Hi Debbie: After my TT and RAI it took seven months for my TSH to even get into the normal range. They had to adjust my meds every 8 weeks after my labs. I had my RAI the begining of November of 99 and didn't start to feel human again until June. Hang in there! you do eventually feel better, but it gets really frustrating in the process. Gail Schuler Redwood City, CA. TT 8/31/99 Dx. Fol. Variant Papillary Carcinoma 9/9/99 Scan & 103 MCI RAI 11/04/99 Clean Scan with Thyrogen 10/13/00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 That was my shcedule too. I had TT 11/7/00 and RAI 12/19/00 and didn't even get back to work until July 2001 because of trying to get my tsh equilibrated. gaschuler wrote: > > Hi Debbie: > > After my TT and RAI it took seven months for my TSH to even get into > the normal range. They had to adjust my meds every 8 weeks after my > labs. > > I had my RAI the begining of November of 99 and didn't start to feel > human again until June. > > Hang in there! you do eventually feel better, but it gets really > frustrating in the process. > > Gail Schuler > Redwood City, CA. > TT 8/31/99 > Dx. Fol. Variant Papillary Carcinoma 9/9/99 > Scan & 103 MCI RAI 11/04/99 > Clean Scan with Thyrogen 10/13/00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 Debbi: Sounds like you need to do some fine-tuning on your Levoxyl. Perhaps your numbers are still a bit high. What is your last reading? Lin in Pa. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 Thanks to all who wrote me publicly and privately regarding my hypo symptoms. I am due for a blood test on Monday. People have mentioned that one shouldn't have to wait for an appointment just to draw blood...the wait really had to do more with my schedule than the doc's. His office has always been very accommodating to me, especially when it comes to stopping in anytime for the lab to draw a blood sample. At any rate, I do feel hypo, but the point I meant to make in my posting (and I probably didn't do a good job) is that I am most affected when I do not get a full night's rest. I nearly fall apart the next day and am worthless to do much of anything but fantasize about lying down. I can't think to do my work, can't talk coherently at times, and am nauseous. I have never felt completely back to normal since my TT and treatment, but when I am tired, or stressed, the symptoms are exacerbated. Is that true for those who are on the right dose of meds? Nice to be back here...feels like home! Debbi Age 42 Washington, DC TT 7/01 2.5 cm tumor/no spread RAI 8/01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 Hi Debbi, Glad you are having the blood test soon. A night without sleep can surely affect the next day's ability to function well. It may be slightly more pronounced for us thycans, but no sleep makes it hard for anyone. Be easy on you. Your test may show the reason for your symptoms. Are you on calcium replacement? You mention nausea and that can happen with too high of a calcium level. Good to have you back, in OH ===== Mail to: grammyDx2@... 1965 TT P/F thyca w/lymph mets, Hypoparathyroidism 1982 RAI for neck & chest mets 09/10/01 Cean scan PTL~! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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