Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 Hi , Is there any particular reason why your doctor is maintaining you on cytomel rather than a T4 drug? Surely you know from reading this list that T4...synthroid, levoxyl and the like are the drug of choice for suppression. I can't tell you why your TSH went down initially but I do suspect why it has gone up. I suspect that cytomel is probably the problem. If patients take a maximum of 50 mcg during hypo preparation to allow their TSH to rise, I don't understand how a doctor can then keep you on the same exact dose and expect it to suppress your TSH. The fact that you have been tired and your mind muddled is more an indication of hypo than anything else.With a TSH of 8.3 you certainly are hypo.You need a TSH reading of <.10. If it were me I would be asking my doctor why he is not treating me with the standard medication used by most doctors to suppress thyroid cancer. Did he ever check your TSH after surgery....not after 2 weeks, but rather after 6 weeks or 8 weeks? And then recheck again to see your numbers 8-12 weeks later? Are you using an endocrinologist? There is plenty of information available for you to review the protocols on suppression at www.thyca.org. When we feel crummy all sorts of things race through our minds. I feel bad for you that you are so worried about your thyca. However, I feel fairly confident that once you are in suppression everything will be fine....the sooner the better. Good luck. Gail dx: 1968, TT,pap. & foll. well differentiated, RAI, rad.neck dissection,lung surgery,hashimoto,iodine resistant,existing thyca nodules in lungs. Last surgery 1972 > I don't usually post any messages; I usually just read and learn, but > tonight I am so sad after today's endo appt that I just needed to > share with you all and be here tonight among people who understand. > Just to give you a brief background of where I am in my thyca > journey: I was dx with papillary thyca in Feb-01; tt in Mar-01; RAI > in July-01; Cytomel started (2)-25mcg; Tsh at 2 weeks after RAI > was .23; Cytomel continued at same dose; Tsh recently taken on 10-8- > 01 was 8.3!!! I just found out today at my appt. My endo doc has > increased my Cytomel to 3 times a day to try to get my Tsh back > down. > > Here's why I perplexed and very sad: > I don't understand WHY my Tsh would be DOWN to .23 initially after > starting the Cytomel, AND NOW my Tsh is up to 8.3! I asked my doc, > but he had no answer to give me. He just said to wait until the > increased Cytomel has a chance to kick in and will redo the tsh level > in about 6 weeks. > > I'm afraid and sad tonight because I think it means that my thyca is > back. Why else would my tsh be elevated since I have no thyroid and > I've had my RAI and the meds did work OK at first. > > I'm so afraid that I'm dying of this cancer. I've been so tired and > my mind has been so muddled for several months now. I just don't > know where I'm going to find the strength to keep going. > > Thanks for being here to listen to me tonight. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 , don't go worrying yourself unnecessarily. From what Gail has said it sounds like you need to see someone who specialises in this area. My GP is a lovely man but his idea of my treatment varies greatly from my endo (who is not a lovely man). My endo certainly maintains me at a more comfortable level because that is his area of specialty. You musn't start thinking you have cancer again, being positive is so important in the battle and we are all here, thinking of you and ready to support you and praying too if you want us too. I've had it twice now and I think it's more scared of me than I am of it. I'm not going to give in, there is too much I want to do in my life. Once you're not hypo you'll feel stronger and realise that being hypo makes you think the worst. Keep reading and learning and let us know when you need a boost. We'll be there for you. Lots of hugs to you > I don't usually post any messages; I usually just read and learn, but > tonight I am so sad after today's endo appt that I just needed to > share with you all and be here tonight among people who understand. > Just to give you a brief background of where I am in my thyca > journey: I was dx with papillary thyca in Feb-01; tt in Mar-01; RAI > in July-01; Cytomel started (2)-25mcg; Tsh at 2 weeks after RAI > was .23; Cytomel continued at same dose; Tsh recently taken on 10-8- > 01 was 8.3!!! I just found out today at my appt. My endo doc has > increased my Cytomel to 3 times a day to try to get my Tsh back > down. > > Here's why I perplexed and very sad: > I don't understand WHY my Tsh would be DOWN to .23 initially after > starting the Cytomel, AND NOW my Tsh is up to 8.3! I asked my doc, > but he had no answer to give me. He just said to wait until the > increased Cytomel has a chance to kick in and will redo the tsh level > in about 6 weeks. > > I'm afraid and sad tonight because I think it means that my thyca is > back. Why else would my tsh be elevated since I have no thyroid and > I've had my RAI and the meds did work OK at first. > > I'm so afraid that I'm dying of this cancer. I've been so tired and > my mind has been so muddled for several months now. I just don't > know where I'm going to find the strength to keep going. > > Thanks for being here to listen to me tonight. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 , Cytomel doesn't suppress TSH as well as T4 does. Is there some medical reason why you're not taking Synthroid or equivalent? > I'm afraid and sad tonight because I think it means that my thyca is > back. Why else would my tsh be elevated since I have no thyroid and > I've had my RAI and the meds did work OK at first. Don't panic. Your TSH is elevated *because* you have no thyroid, not because you have cancer! You are hypothyroid; you need to be on a different/better/higher medication regimen. That's all. It's time for a serious discussion of medication protocols with your doctor. Does he have much experience with thyca patients? ellen -- mailto:ellen@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 , Part of your " sad " is because you are probably depressed from being hypo. I also noticed you are posting at 11:00pm, you could be extra tired on top of everything else. Make an appointment to see your endo in person and tell him how you feel, also if you cannot have someone bring you, write down his plan of attack so it is straight in your mind and you can read it back to yourself. (I'll bet you forget and cannot concentrate!!) Take every pamphlet in his office about the thyroid to read later. Feeling the way you do does not mean you cancer is " back " , I actually felt better before all this " treatment " and it's been over a year. If I understand all this correctly your tsh is your thyroid stimulating hormone, you want that number to be low while being suppressed so you do not stimulate any existing thyroid material to " work " you want to keep all the thyroid material left in your body dormant, until through scans and blood tests you know there is no cancer or thyroid material left. (I'm talking as if you have had a total thyroidectemy.) I would definitely ask your endo why he or she is not putting you on levoxyl, synthroid etc... to suppress. If my information is incorrect please someone correct me. Good Luck you are not alone, Keep us posted Toni (CT) papthyca, node involv.,10/00 RAI 11/01 in the midst of hypo, next RAI not soon enough Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 Hi ; hang in there.. the TSH being higher doesn't mean your thyca is back, TSH isn't an indicator for thyca, it just means you're a bit hypo, it may be that you don't have enough cytomel in your system, or that your cytomel was a bit " worn off " when you had your blood work.. Cytomel leaves your system pretty quickly and lasts about 8 hours or so, but T4 (synthroid, levoxyl) lasts much longer in your system (it takes like a week to wear off and up to 6 weeks to get up to a theraputic level in your system )and gives you a consistient level in your blood. Your TSH may be higher now also because you have less thyroid (or none) in your system, RAI takes up to 6 months to work so at 2 weeks after RAI all the thyroid cells might not have been dead yet so they were giving off TSH. Usually once a person has had a TT and RAI - they go on T4 for long term maintenance. You are most likely tired and muddled due to being kind of hypo for a while, that wil really wear you down.. to be creepingly more hypo since july... so don't let your fears overwhelm you, its being hypo not the cancer thats wearing you out.... you might want to talk to your endo about having synthroid or unithroid or levoxyl, one of the T4 medications instead of t3 barb tt 8/99 RAI 4/00 clean scan 12/00 > I don't usually post any messages; I usually just read and learn, but > tonight I am so sad after today's endo appt that I just needed to > share with you all and be here tonight among people who understand. > Just to give you a brief background of where I am in my thyca > journey: I was dx with papillary thyca in Feb-01; tt in Mar-01; RAI > in July-01; Cytomel started (2)-25mcg; Tsh at 2 weeks after RAI > was .23; Cytomel continued at same dose; Tsh recently taken on 10-8- > 01 was 8.3!!! I just found out today at my appt. My endo doc has > increased my Cytomel to 3 times a day to try to get my Tsh back > down. > > Here's why I perplexed and very sad: > I don't understand WHY my Tsh would be DOWN to .23 initially after > starting the Cytomel, AND NOW my Tsh is up to 8.3! I asked my doc, > but he had no answer to give me. He just said to wait until the > increased Cytomel has a chance to kick in and will redo the tsh level > in about 6 weeks. > > I'm afraid and sad tonight because I think it means that my thyca is > back. Why else would my tsh be elevated since I have no thyroid and > I've had my RAI and the meds did work OK at first. > > I'm so afraid that I'm dying of this cancer. I've been so tired and > my mind has been so muddled for several months now. I just don't > know where I'm going to find the strength to keep going. > > Thanks for being here to listen to me tonight. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 , I'm so sorry that you're so afraid! I totally understand! Surgery and RAI weren't that long ago, so you haven't had time to start feeling confident in your health again. If this weren't enough, you're still going through surprises with inconsistent TSH results. Nothing soothes the mind like good test results...it's as if your body is back in control - " behaving " ...on the other hand, it's very hard to recover with strange test results, especially while hypo! I think the others are right in saying that a T4 or T4/T3 medication would give you the results you're striving for. T3 alone won't do it. It's also very normal to feel overwhelmed at different times this first year after diagnosis, surgery, etc. When something isn't right, it's common to wonder about thyca being the cause. I can't speak for all, but I sure had episodes of that! Talk to your doctor/endo about why you aren't taking a T4 medication. I will never tell you you " shouldn't feel the way you do " . I'll try to help you with any suggestions and help you through things with some perspective, but dog gone it, if you feel afraid and sad - you let me know - we'll get through it!! :-) You're going through very normal feelings - things will be OK. Sandy > I'm afraid and sad tonight because I think it means that my thyca is > back. Why else would my tsh be elevated since I have no thyroid and > I've had my RAI and the meds did work OK at first. > > I'm so afraid that I'm dying of this cancer. I've been so tired and > my mind has been so muddled for several months now. I just don't > know where I'm going to find the strength to keep going. > > Thanks for being here to listen to me tonight. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 > Is there any particular reason why your doctor is maintaining you on cytomel rather than a T4 drug? Surely you know from reading this list that T4...synthroid, levoxyl and the like are the drug of choice for suppression.> Yes, I did notice that others are on T4, so I asked my doctor if he would prescribe some for me and he said No. He wants to " wait and see " how the 3 times a day dose does for the next 6 weeks, then do another blood test. <If patients take a maximum of 50 mcg during hypo preparation to allow their TSH to rise, I don't understand how a doctor can then keep you on the same exact dose and expect it to suppress your TSH.> That's a good point you make. I hadn't thought about that. Did he ever check your TSH after surgery....not after 2 weeks, > but rather after 6 weeks or 8 weeks? And then recheck again to see your numbers 8-12 weeks later? No. <Are you using an endocrinologist?> Yes. Thanks for responding, Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 GET A NEW DOCTOR! -- On Fri, 26 Oct 2001 23:50:50 amandacady wrote: >> Is there any particular reason why your doctor is maintaining you >on cytomel rather than a T4 drug? Surely you know from reading this >list that T4...synthroid, levoxyl and the like are the drug of >choice for suppression.> > >Yes, I did notice that others are on T4, so I asked my doctor if he >would prescribe some for me and he said No. He wants to " wait and >see " how the 3 times a day dose does for the next 6 weeks, then do >another blood test. > ><If patients take a maximum of 50 mcg during hypo preparation to >allow their TSH to rise, I don't understand how a doctor can then >keep you on the same exact dose and expect it to suppress your TSH.> > >That's a good point you make. I hadn't thought about that. > >Did he ever check your TSH after surgery....not after 2 weeks, >> but rather after 6 weeks or 8 weeks? And then recheck again to see >your numbers 8-12 weeks later? > >No. > ><Are you using an endocrinologist?> > >Yes. > >Thanks for responding, Gail > > > > > > Make a difference, help support the relief efforts in the U.S. http://clubs.lycos.com/live/events/september11.asp Quote Link to comment Share on other sites More sharing options...
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