Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Hi Holly - Thanks for sharing this with me. You're right it sounds like all the " usual " reasons I've already read or heard from other people. Reason 1 and 2 seem like not really an issue to me. Reason 3 is the only one that really concerns me, too. I have some statistics somewhere on the recurrence rate and it was rather low, particularly with a total thyroidectomy (duh!). But even with a subtotal, the recurrence rate didn't seem all that high, and I think I remember it was more over a period of like 10 years or more. >This is a real issue, as I've discovered people who have >had this surgery and had symptoms return. One of them was after 20 years, >which I think I could handle. I'd be 57 after 20 years, and not as concerned >about developing cancer in my lifetime if I chose the RAI then. But the >other was in a relatively short time after the surgery. Of course, my >understanding is that some of the thyroid remains after RAI as well. The >thing is to have enough of the thyroid removed so as to lesson the chance of >that happening. Boy, I tell you, your thought process in making this decision was so identical to mine - I knew exactly what you were saying! It was like you were reading my mind! I think the decision to do RAI is definitely different when you take age into account. >But it is >an option, and possibly the best option for some people, and I think it's >unfair for us to completely scare people away from it. I've seen that >happen over and over as new people join our group. There are people out >there who are not good candidates for surgery because of health problems or >allergies to anesthesia. Or they're just plain terrified of surgery. They >might also be unable to tolerate ATDs. Or they might not respond well to >the ATDs and suffer unnecessarily for years when the RAI could have gotten >them back on track again. I do know that some people have the RAI and go >on to live healthy, productive lives. People do make an informed choice to >have it. It isn't always just shoved blindly down our throats. Granted, it >is most of the time, but not always. Amen to that. I don't necessarily think people are trying to " scare " people out of having RAI, I think it's more a matter or urging them to give more thought to the decision and at least find out about other options. And if it takes telling people all the bad things that have happened to them since having RAI to make them stop and think, well maybe that's better than just jumping in blindly and having to regret something you were pushed into doing. I think it's too often the case that a doctor present RAI as the " only " option and like you said, patients don't receive all the facts they need to better make their own decision. I have to admit I was tempted to have RAI because it sounded like it was the quickest and easiest solution, and at that point, I just wanted to feel better sooner rather than later. I think a lot of people can relate to that! >I really sick of taking the ATDs, and I have to make myself keep trying with >them. I wonder if I'm making the right choice. I got my labs yesterday, >and I'm now more hyper than I was when I started. This after being severely >hypo in November and December. I've basically wasted 7 months of my life >suffering and worrying, and I wonder how long I should continue doing this. >Carrying on with this disease is causing long-term health problems. I worry >about my heart. I worry that my mind is going to be permanently damaged. >It's affecting my career. It's affecting my relationship with my daughter. >If I die tomorrow, will it have been worth it to have " lost " these last 7 >months? Oh, Holly, my heart aches for you - I have felt similarly! I am so sorry you're more hyper - what's the doc doing? Increasing your dosage now? Hopefully that will bring it back down! Don't feel you've wasted the last 7 months. I'm sure if you were able to ask you daughter if she thought it was a waste, she wouldn't think so in the least! I know there are days that I have been a total and complete b*tch to my kids and hubby and I wonder why the heck they would want me around when I'm hyper. But then I chill out and realize that it's not really me, it's the stupid disease and while the kids may not understand that, they know that I love them dearly and that I'm not always the evil mom! Just the fact that you're there with your daughter is enough for her - much better than the alternative from her point of view, I'm certain! I try and focus on the thought that I'm not only trying to get better for myself, but for them as well. If you ever need to talk about how " evil mom " shows up and disrupts your relationship with your daughter, or just how it sucks to be a mom with GD, or just feel like venting, feel free to email me! It's going to get better one way or another! ----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Hi . I haven't gotten my " letter " in the mail telling me what to do. I called and got my results from the nurse and the doc hadn't looked at them yet-TSH .004, FT4 3.15. In the meantime, I've increased my dose myself. My resting heart rate is down from 120 on Monday to 80 today, so I'm feeling better already. If I can just get myself in that normal range for once, I might be able to hang in there long enough to see if I can go into remission. Does anyone know, once you do get euthyroid, how long you stay there on ATDs? Or is this too individual. I'd hate to get there and start going up and down again. Frustration, frustration! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Hi . I haven't gotten my " letter " in the mail telling me what to do. I called and got my results from the nurse and the doc hadn't looked at them yet-TSH .004, FT4 3.15. In the meantime, I've increased my dose myself. My resting heart rate is down from 120 on Monday to 80 today, so I'm feeling better already. If I can just get myself in that normal range for once, I might be able to hang in there long enough to see if I can go into remission. Does anyone know, once you do get euthyroid, how long you stay there on ATDs? Or is this too individual. I'd hate to get there and start going up and down again. Frustration, frustration! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Hi . I haven't gotten my " letter " in the mail telling me what to do. I called and got my results from the nurse and the doc hadn't looked at them yet-TSH .004, FT4 3.15. In the meantime, I've increased my dose myself. My resting heart rate is down from 120 on Monday to 80 today, so I'm feeling better already. If I can just get myself in that normal range for once, I might be able to hang in there long enough to see if I can go into remission. Does anyone know, once you do get euthyroid, how long you stay there on ATDs? Or is this too individual. I'd hate to get there and start going up and down again. Frustration, frustration! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Holly, I can only speak for myself. I've been on ATD's most of the last 7 years, give or take a few months of " remission " in the middle here and there. Right now I am totally stable, on 1.25 mg. methimazole daily. I tried to stop altogether, because the endo said the amount I'm taking, I might as well stop--but it was not right, I started having hyper symptoms and as soon as I went back on my almost non-existent dose, they went away again. I don't find it a bit onerous to take the quarter pill daily, and could go on that way the rest of my life, if I have to. I also know that if I hit a period of extreme stress, things could change again. Or, I might really go into remission one of these days. And have it last a while--there are others here that have done that. I just don't know. The most important thing for me has been close self-monitoring. I try to remain aware of how I feel and what my pulse is and how I'm sleeping, how my bowels work, what if any other symptoms I have, at all times. I adjust my dose myself, because I have a minimally cooperative endo who seems at least content with me telling him what I have done, after I've done it, but if pressed for advice, would still tell me to go get RAI done. In fact, if I had to sum up his attitude, it's probably 'let her do what she wants till she gets herself into trouble; then, I'll get my way and she'll HAVE to go along with RAI'. But I'm putting words in his mouth...not a respectful thing to do I guess. On another note, today is my baby's 18th birthday and on Friday my eldest turns 30. A time of reflection for me, to say the least! Terry > > Reply-To: graves_support > Date: Wed, 6 Mar 2002 16:15:35 -0500 > To: " 'graves_support ' " <graves_support > > Subject: RE: Holly > > Does anyone know, once you do get euthyroid, how long you > stay there on ATDs? Or is this too individual. I'd hate to get there and > start going up and down again. Frustration, frustration! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Holly, I can only speak for myself. I've been on ATD's most of the last 7 years, give or take a few months of " remission " in the middle here and there. Right now I am totally stable, on 1.25 mg. methimazole daily. I tried to stop altogether, because the endo said the amount I'm taking, I might as well stop--but it was not right, I started having hyper symptoms and as soon as I went back on my almost non-existent dose, they went away again. I don't find it a bit onerous to take the quarter pill daily, and could go on that way the rest of my life, if I have to. I also know that if I hit a period of extreme stress, things could change again. Or, I might really go into remission one of these days. And have it last a while--there are others here that have done that. I just don't know. The most important thing for me has been close self-monitoring. I try to remain aware of how I feel and what my pulse is and how I'm sleeping, how my bowels work, what if any other symptoms I have, at all times. I adjust my dose myself, because I have a minimally cooperative endo who seems at least content with me telling him what I have done, after I've done it, but if pressed for advice, would still tell me to go get RAI done. In fact, if I had to sum up his attitude, it's probably 'let her do what she wants till she gets herself into trouble; then, I'll get my way and she'll HAVE to go along with RAI'. But I'm putting words in his mouth...not a respectful thing to do I guess. On another note, today is my baby's 18th birthday and on Friday my eldest turns 30. A time of reflection for me, to say the least! Terry > > Reply-To: graves_support > Date: Wed, 6 Mar 2002 16:15:35 -0500 > To: " 'graves_support ' " <graves_support > > Subject: RE: Holly > > Does anyone know, once you do get euthyroid, how long you > stay there on ATDs? Or is this too individual. I'd hate to get there and > start going up and down again. Frustration, frustration! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Holly, I can only speak for myself. I've been on ATD's most of the last 7 years, give or take a few months of " remission " in the middle here and there. Right now I am totally stable, on 1.25 mg. methimazole daily. I tried to stop altogether, because the endo said the amount I'm taking, I might as well stop--but it was not right, I started having hyper symptoms and as soon as I went back on my almost non-existent dose, they went away again. I don't find it a bit onerous to take the quarter pill daily, and could go on that way the rest of my life, if I have to. I also know that if I hit a period of extreme stress, things could change again. Or, I might really go into remission one of these days. And have it last a while--there are others here that have done that. I just don't know. The most important thing for me has been close self-monitoring. I try to remain aware of how I feel and what my pulse is and how I'm sleeping, how my bowels work, what if any other symptoms I have, at all times. I adjust my dose myself, because I have a minimally cooperative endo who seems at least content with me telling him what I have done, after I've done it, but if pressed for advice, would still tell me to go get RAI done. In fact, if I had to sum up his attitude, it's probably 'let her do what she wants till she gets herself into trouble; then, I'll get my way and she'll HAVE to go along with RAI'. But I'm putting words in his mouth...not a respectful thing to do I guess. On another note, today is my baby's 18th birthday and on Friday my eldest turns 30. A time of reflection for me, to say the least! Terry > > Reply-To: graves_support > Date: Wed, 6 Mar 2002 16:15:35 -0500 > To: " 'graves_support ' " <graves_support > > Subject: RE: Holly > > Does anyone know, once you do get euthyroid, how long you > stay there on ATDs? Or is this too individual. I'd hate to get there and > start going up and down again. Frustration, frustration! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Dear Holly I was euthyroid in about 5 or 6 weeks of commencing on PTU. I stayed there until surgery, some 8 weeks later. Hang in there. Cheers Caroline " Sutherland, Holly " wrote: > Hi . I haven't gotten my " letter " in the mail telling me what to > do. I called and got my results from the nurse and the doc hadn't looked at > them yet-TSH .004, FT4 3.15. In the meantime, I've increased my dose > myself. My resting heart rate is down from 120 on Monday to 80 today, so > I'm feeling better already. If I can just get myself in that normal range > for once, I might be able to hang in there long enough to see if I can go > into remission. Does anyone know, once you do get euthyroid, how long you > stay there on ATDs? Or is this too individual. I'd hate to get there and > start going up and down again. Frustration, frustration! > > Holly > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 HI Holly, I was up and down for the first 3 months, but have been euthyroid ever since....for a year or so now.....and I plan to cut my 2.5 mg of Methimazole down to 1.25 with my newly acquired pill cutter if at any time I start to feel sluggish. I told my Endo that I wanted to stay on at least 2 years and she said that was fine. She knew the recommended time for best results was 18 months to 2 years. Also, due to my age....40 ( she called this young...bless her heart) my chances are better than someone who is older. Take care, Ruthie Re: Holly Dear Holly I was euthyroid in about 5 or 6 weeks of commencing on PTU. I stayed there until surgery, some 8 weeks later. Hang in there. Cheers Caroline " Sutherland, Holly " wrote: > Hi . I haven't gotten my " letter " in the mail telling me what to > do. I called and got my results from the nurse and the doc hadn't looked at > them yet-TSH .004, FT4 3.15. In the meantime, I've increased my dose > myself. My resting heart rate is down from 120 on Monday to 80 today, so > I'm feeling better already. If I can just get myself in that normal range > for once, I might be able to hang in there long enough to see if I can go > into remission. Does anyone know, once you do get euthyroid, how long you > stay there on ATDs? Or is this too individual. I'd hate to get there and > start going up and down again. Frustration, frustration! > > Holly > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 HI Holly, I was up and down for the first 3 months, but have been euthyroid ever since....for a year or so now.....and I plan to cut my 2.5 mg of Methimazole down to 1.25 with my newly acquired pill cutter if at any time I start to feel sluggish. I told my Endo that I wanted to stay on at least 2 years and she said that was fine. She knew the recommended time for best results was 18 months to 2 years. Also, due to my age....40 ( she called this young...bless her heart) my chances are better than someone who is older. Take care, Ruthie Re: Holly Dear Holly I was euthyroid in about 5 or 6 weeks of commencing on PTU. I stayed there until surgery, some 8 weeks later. Hang in there. Cheers Caroline " Sutherland, Holly " wrote: > Hi . I haven't gotten my " letter " in the mail telling me what to > do. I called and got my results from the nurse and the doc hadn't looked at > them yet-TSH .004, FT4 3.15. In the meantime, I've increased my dose > myself. My resting heart rate is down from 120 on Monday to 80 today, so > I'm feeling better already. If I can just get myself in that normal range > for once, I might be able to hang in there long enough to see if I can go > into remission. Does anyone know, once you do get euthyroid, how long you > stay there on ATDs? Or is this too individual. I'd hate to get there and > start going up and down again. Frustration, frustration! > > Holly > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 So is it my doctor? I've been on them for 7 months. Here are my labs: 8/1/2001 TSH <. 01 FT4 3.9 T3 total 550 started PTU 50 mg 2X day 9/27/2001 TSH .04 FT4 2.3 T3 total 239 PTU increased to 50 mg 3Xday - switch to methimazole in October, 10 mg 2X day 11/13/2001 TSH 30.504 FT4 .40 FT3 1.22 Went off methimazole for three days, then went back on at 5 mg 2X day 12/17/2001 TSH 1.33 FT4 .65 Dosage decreased to 5 mg once a day-started taking 7.5 in Jan. as I was feeling hyper 2/25/2002 TSH .004 FT4 3.15 I've increased my dose to 10 mg at night and 5 mg in the morning to get levels down. Haven't gotten letter from doc yet saying what to do. In December I was still slightly hypo, but I'd only been taking the reduced dose for 16 days and I had been very hypo prior to that. I'm thinking the 5mg 2X a day might have been right, but my body was still trying to build up from being hypo when tested. Who knows? If I haven't heard from him, I'm going to continue the 10 & 5 until next Wednesday, and if I'm starting to get those old hypo symptoms, I'll reduce to 5 & 5 again. I do have an appt. with a new doctor on April 2. Do you see why I hate this so much and I want them to just take the darn thing out??? Keep telling me to be patient. I really don't want to have to rely on Synthroid the rest of my life either. Re: Holly HI Holly, I was up and down for the first 3 months, but have been euthyroid ever since....for a year or so now.....and I plan to cut my 2.5 mg of Methimazole down to 1.25 with my newly acquired pill cutter if at any time I start to feel sluggish. I told my Endo that I wanted to stay on at least 2 years and she said that was fine. She knew the recommended time for best results was 18 months to 2 years. Also, due to my age....40 ( she called this young...bless her heart) my chances are better than someone who is older. Take care, Ruthie Re: Holly Dear Holly I was euthyroid in about 5 or 6 weeks of commencing on PTU. I stayed there until surgery, some 8 weeks later. Hang in there. Cheers Caroline " Sutherland, Holly " wrote: > Hi . I haven't gotten my " letter " in the mail telling me what to > do. I called and got my results from the nurse and the doc hadn't looked at > them yet-TSH .004, FT4 3.15. In the meantime, I've increased my dose > myself. My resting heart rate is down from 120 on Monday to 80 today, so > I'm feeling better already. If I can just get myself in that normal range > for once, I might be able to hang in there long enough to see if I can go > into remission. Does anyone know, once you do get euthyroid, how long you > stay there on ATDs? Or is this too individual. I'd hate to get there and > start going up and down again. Frustration, frustration! > > Holly > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 So is it my doctor? I've been on them for 7 months. Here are my labs: 8/1/2001 TSH <. 01 FT4 3.9 T3 total 550 started PTU 50 mg 2X day 9/27/2001 TSH .04 FT4 2.3 T3 total 239 PTU increased to 50 mg 3Xday - switch to methimazole in October, 10 mg 2X day 11/13/2001 TSH 30.504 FT4 .40 FT3 1.22 Went off methimazole for three days, then went back on at 5 mg 2X day 12/17/2001 TSH 1.33 FT4 .65 Dosage decreased to 5 mg once a day-started taking 7.5 in Jan. as I was feeling hyper 2/25/2002 TSH .004 FT4 3.15 I've increased my dose to 10 mg at night and 5 mg in the morning to get levels down. Haven't gotten letter from doc yet saying what to do. In December I was still slightly hypo, but I'd only been taking the reduced dose for 16 days and I had been very hypo prior to that. I'm thinking the 5mg 2X a day might have been right, but my body was still trying to build up from being hypo when tested. Who knows? If I haven't heard from him, I'm going to continue the 10 & 5 until next Wednesday, and if I'm starting to get those old hypo symptoms, I'll reduce to 5 & 5 again. I do have an appt. with a new doctor on April 2. Do you see why I hate this so much and I want them to just take the darn thing out??? Keep telling me to be patient. I really don't want to have to rely on Synthroid the rest of my life either. Re: Holly HI Holly, I was up and down for the first 3 months, but have been euthyroid ever since....for a year or so now.....and I plan to cut my 2.5 mg of Methimazole down to 1.25 with my newly acquired pill cutter if at any time I start to feel sluggish. I told my Endo that I wanted to stay on at least 2 years and she said that was fine. She knew the recommended time for best results was 18 months to 2 years. Also, due to my age....40 ( she called this young...bless her heart) my chances are better than someone who is older. Take care, Ruthie Re: Holly Dear Holly I was euthyroid in about 5 or 6 weeks of commencing on PTU. I stayed there until surgery, some 8 weeks later. Hang in there. Cheers Caroline " Sutherland, Holly " wrote: > Hi . I haven't gotten my " letter " in the mail telling me what to > do. I called and got my results from the nurse and the doc hadn't looked at > them yet-TSH .004, FT4 3.15. In the meantime, I've increased my dose > myself. My resting heart rate is down from 120 on Monday to 80 today, so > I'm feeling better already. If I can just get myself in that normal range > for once, I might be able to hang in there long enough to see if I can go > into remission. Does anyone know, once you do get euthyroid, how long you > stay there on ATDs? Or is this too individual. I'd hate to get there and > start going up and down again. Frustration, frustration! > > Holly > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 So is it my doctor? I've been on them for 7 months. Here are my labs: 8/1/2001 TSH <. 01 FT4 3.9 T3 total 550 started PTU 50 mg 2X day 9/27/2001 TSH .04 FT4 2.3 T3 total 239 PTU increased to 50 mg 3Xday - switch to methimazole in October, 10 mg 2X day 11/13/2001 TSH 30.504 FT4 .40 FT3 1.22 Went off methimazole for three days, then went back on at 5 mg 2X day 12/17/2001 TSH 1.33 FT4 .65 Dosage decreased to 5 mg once a day-started taking 7.5 in Jan. as I was feeling hyper 2/25/2002 TSH .004 FT4 3.15 I've increased my dose to 10 mg at night and 5 mg in the morning to get levels down. Haven't gotten letter from doc yet saying what to do. In December I was still slightly hypo, but I'd only been taking the reduced dose for 16 days and I had been very hypo prior to that. I'm thinking the 5mg 2X a day might have been right, but my body was still trying to build up from being hypo when tested. Who knows? If I haven't heard from him, I'm going to continue the 10 & 5 until next Wednesday, and if I'm starting to get those old hypo symptoms, I'll reduce to 5 & 5 again. I do have an appt. with a new doctor on April 2. Do you see why I hate this so much and I want them to just take the darn thing out??? Keep telling me to be patient. I really don't want to have to rely on Synthroid the rest of my life either. Re: Holly HI Holly, I was up and down for the first 3 months, but have been euthyroid ever since....for a year or so now.....and I plan to cut my 2.5 mg of Methimazole down to 1.25 with my newly acquired pill cutter if at any time I start to feel sluggish. I told my Endo that I wanted to stay on at least 2 years and she said that was fine. She knew the recommended time for best results was 18 months to 2 years. Also, due to my age....40 ( she called this young...bless her heart) my chances are better than someone who is older. Take care, Ruthie Re: Holly Dear Holly I was euthyroid in about 5 or 6 weeks of commencing on PTU. I stayed there until surgery, some 8 weeks later. Hang in there. Cheers Caroline " Sutherland, Holly " wrote: > Hi . I haven't gotten my " letter " in the mail telling me what to > do. I called and got my results from the nurse and the doc hadn't looked at > them yet-TSH .004, FT4 3.15. In the meantime, I've increased my dose > myself. My resting heart rate is down from 120 on Monday to 80 today, so > I'm feeling better already. If I can just get myself in that normal range > for once, I might be able to hang in there long enough to see if I can go > into remission. Does anyone know, once you do get euthyroid, how long you > stay there on ATDs? Or is this too individual. I'd hate to get there and > start going up and down again. Frustration, frustration! > > Holly > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Holly - I can't believe you haven't heard from your doctor on what to do yet! It does look like that 5 mg 2x a day was about right, but what do I know? I'm happy that you're feeling a little better and your heart rate has gone back down since you've upped the dose a bit. I still can't believe it's taken your doc so long to get back to you - they can't just tell you over the phone what to do and send the letter as confirmation? Are you very attached to this doctor? Is this the way he usually works? I'm just wondering if he's not really " committed " to helping you get well with ATD therapy. It doesn't sound like he's very responsive, which it seems you have to be with ATDs, perhaps this is why so many docs don't like to offer them and prefer RAI. Do you think you might be better off finding someone who is more willing to monitor a patient on ATDs? Just asking, perhaps this would solve some of your ups and downs! Re: Holly > >HI Holly, >I was up and down for the first 3 months, but have been euthyroid ever >since....for a year or so now.....and I plan to cut my 2.5 mg of Methimazole >down to 1.25 with my newly acquired pill cutter if at any time I start to >feel sluggish. I told my Endo that I wanted to stay on at least 2 years and >she said that was fine. She knew the recommended time for best results was >18 months to 2 years. Also, due to my age....40 ( she called this >young...bless her heart) my chances are better than someone who is older. >Take care, >Ruthie > Re: Holly > > > Dear Holly > > I was euthyroid in about 5 or 6 weeks of commencing on PTU. I stayed there >until surgery, some 8 weeks later. > > Hang in there. > > Cheers > Caroline > > " Sutherland, Holly " wrote: > > > Hi . I haven't gotten my " letter " in the mail telling me what >to > > do. I called and got my results from the nurse and the doc hadn't >looked at > > them yet-TSH .004, FT4 3.15. In the meantime, I've increased my dose > > myself. My resting heart rate is down from 120 on Monday to 80 today, >so > > I'm feeling better already. If I can just get myself in that normal >range > > for once, I might be able to hang in there long enough to see if I can >go > > into remission. Does anyone know, once you do get euthyroid, how long >you > > stay there on ATDs? Or is this too individual. I'd hate to get there >and > > start going up and down again. Frustration, frustration! > > > > Holly > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Holly - I can't believe you haven't heard from your doctor on what to do yet! It does look like that 5 mg 2x a day was about right, but what do I know? I'm happy that you're feeling a little better and your heart rate has gone back down since you've upped the dose a bit. I still can't believe it's taken your doc so long to get back to you - they can't just tell you over the phone what to do and send the letter as confirmation? Are you very attached to this doctor? Is this the way he usually works? I'm just wondering if he's not really " committed " to helping you get well with ATD therapy. It doesn't sound like he's very responsive, which it seems you have to be with ATDs, perhaps this is why so many docs don't like to offer them and prefer RAI. Do you think you might be better off finding someone who is more willing to monitor a patient on ATDs? Just asking, perhaps this would solve some of your ups and downs! Re: Holly > >HI Holly, >I was up and down for the first 3 months, but have been euthyroid ever >since....for a year or so now.....and I plan to cut my 2.5 mg of Methimazole >down to 1.25 with my newly acquired pill cutter if at any time I start to >feel sluggish. I told my Endo that I wanted to stay on at least 2 years and >she said that was fine. She knew the recommended time for best results was >18 months to 2 years. Also, due to my age....40 ( she called this >young...bless her heart) my chances are better than someone who is older. >Take care, >Ruthie > Re: Holly > > > Dear Holly > > I was euthyroid in about 5 or 6 weeks of commencing on PTU. I stayed there >until surgery, some 8 weeks later. > > Hang in there. > > Cheers > Caroline > > " Sutherland, Holly " wrote: > > > Hi . I haven't gotten my " letter " in the mail telling me what >to > > do. I called and got my results from the nurse and the doc hadn't >looked at > > them yet-TSH .004, FT4 3.15. In the meantime, I've increased my dose > > myself. My resting heart rate is down from 120 on Monday to 80 today, >so > > I'm feeling better already. If I can just get myself in that normal >range > > for once, I might be able to hang in there long enough to see if I can >go > > into remission. Does anyone know, once you do get euthyroid, how long >you > > stay there on ATDs? Or is this too individual. I'd hate to get there >and > > start going up and down again. Frustration, frustration! > > > > Holly > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Holly - I can't believe you haven't heard from your doctor on what to do yet! It does look like that 5 mg 2x a day was about right, but what do I know? I'm happy that you're feeling a little better and your heart rate has gone back down since you've upped the dose a bit. I still can't believe it's taken your doc so long to get back to you - they can't just tell you over the phone what to do and send the letter as confirmation? Are you very attached to this doctor? Is this the way he usually works? I'm just wondering if he's not really " committed " to helping you get well with ATD therapy. It doesn't sound like he's very responsive, which it seems you have to be with ATDs, perhaps this is why so many docs don't like to offer them and prefer RAI. Do you think you might be better off finding someone who is more willing to monitor a patient on ATDs? Just asking, perhaps this would solve some of your ups and downs! Re: Holly > >HI Holly, >I was up and down for the first 3 months, but have been euthyroid ever >since....for a year or so now.....and I plan to cut my 2.5 mg of Methimazole >down to 1.25 with my newly acquired pill cutter if at any time I start to >feel sluggish. I told my Endo that I wanted to stay on at least 2 years and >she said that was fine. She knew the recommended time for best results was >18 months to 2 years. Also, due to my age....40 ( she called this >young...bless her heart) my chances are better than someone who is older. >Take care, >Ruthie > Re: Holly > > > Dear Holly > > I was euthyroid in about 5 or 6 weeks of commencing on PTU. I stayed there >until surgery, some 8 weeks later. > > Hang in there. > > Cheers > Caroline > > " Sutherland, Holly " wrote: > > > Hi . I haven't gotten my " letter " in the mail telling me what >to > > do. I called and got my results from the nurse and the doc hadn't >looked at > > them yet-TSH .004, FT4 3.15. In the meantime, I've increased my dose > > myself. My resting heart rate is down from 120 on Monday to 80 today, >so > > I'm feeling better already. If I can just get myself in that normal >range > > for once, I might be able to hang in there long enough to see if I can >go > > into remission. Does anyone know, once you do get euthyroid, how long >you > > stay there on ATDs? Or is this too individual. I'd hate to get there >and > > start going up and down again. Frustration, frustration! > > > > Holly > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 , I'm seeing a new doctor on April 2. The doctor who hasn't responded to me yet is the one who thinks I'm wasting my time on ATDs. He wanted me to do RAI my first visit. When I went really hypo, he did respond to me right away-over the phone. When I called in Monday, they were apparently very busy because the nurse was very short with me. She said he hadn't looked at my results yet and to wait for the letter. I told her I wanted to know what the values were and she huffed and looked them up for me. Normally, she's not like that, and if she's concerned about my levels, she grabs him between patients and asks what I need to do. Honestly, I sometimes wonder if my GP wouldn't be a better option for monitoring me right now. At least I know he cares, and he's right down the street from where I live, as opposed to a city 30 miles away where my endo is. Thanks for your concern and support! Holly Re: Holly Holly - I can't believe you haven't heard from your doctor on what to do yet! It does look like that 5 mg 2x a day was about right, but what do I know? I'm happy that you're feeling a little better and your heart rate has gone back down since you've upped the dose a bit. I still can't believe it's taken your doc so long to get back to you - they can't just tell you over the phone what to do and send the letter as confirmation? Are you very attached to this doctor? Is this the way he usually works? I'm just wondering if he's not really " committed " to helping you get well with ATD therapy. It doesn't sound like he's very responsive, which it seems you have to be with ATDs, perhaps this is why so many docs don't like to offer them and prefer RAI. Do you think you might be better off finding someone who is more willing to monitor a patient on ATDs? Just asking, perhaps this would solve some of your ups and downs! .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 , I'm seeing a new doctor on April 2. The doctor who hasn't responded to me yet is the one who thinks I'm wasting my time on ATDs. He wanted me to do RAI my first visit. When I went really hypo, he did respond to me right away-over the phone. When I called in Monday, they were apparently very busy because the nurse was very short with me. She said he hadn't looked at my results yet and to wait for the letter. I told her I wanted to know what the values were and she huffed and looked them up for me. Normally, she's not like that, and if she's concerned about my levels, she grabs him between patients and asks what I need to do. Honestly, I sometimes wonder if my GP wouldn't be a better option for monitoring me right now. At least I know he cares, and he's right down the street from where I live, as opposed to a city 30 miles away where my endo is. Thanks for your concern and support! Holly Re: Holly Holly - I can't believe you haven't heard from your doctor on what to do yet! It does look like that 5 mg 2x a day was about right, but what do I know? I'm happy that you're feeling a little better and your heart rate has gone back down since you've upped the dose a bit. I still can't believe it's taken your doc so long to get back to you - they can't just tell you over the phone what to do and send the letter as confirmation? Are you very attached to this doctor? Is this the way he usually works? I'm just wondering if he's not really " committed " to helping you get well with ATD therapy. It doesn't sound like he's very responsive, which it seems you have to be with ATDs, perhaps this is why so many docs don't like to offer them and prefer RAI. Do you think you might be better off finding someone who is more willing to monitor a patient on ATDs? Just asking, perhaps this would solve some of your ups and downs! .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 , I'm seeing a new doctor on April 2. The doctor who hasn't responded to me yet is the one who thinks I'm wasting my time on ATDs. He wanted me to do RAI my first visit. When I went really hypo, he did respond to me right away-over the phone. When I called in Monday, they were apparently very busy because the nurse was very short with me. She said he hadn't looked at my results yet and to wait for the letter. I told her I wanted to know what the values were and she huffed and looked them up for me. Normally, she's not like that, and if she's concerned about my levels, she grabs him between patients and asks what I need to do. Honestly, I sometimes wonder if my GP wouldn't be a better option for monitoring me right now. At least I know he cares, and he's right down the street from where I live, as opposed to a city 30 miles away where my endo is. Thanks for your concern and support! Holly Re: Holly Holly - I can't believe you haven't heard from your doctor on what to do yet! It does look like that 5 mg 2x a day was about right, but what do I know? I'm happy that you're feeling a little better and your heart rate has gone back down since you've upped the dose a bit. I still can't believe it's taken your doc so long to get back to you - they can't just tell you over the phone what to do and send the letter as confirmation? Are you very attached to this doctor? Is this the way he usually works? I'm just wondering if he's not really " committed " to helping you get well with ATD therapy. It doesn't sound like he's very responsive, which it seems you have to be with ATDs, perhaps this is why so many docs don't like to offer them and prefer RAI. Do you think you might be better off finding someone who is more willing to monitor a patient on ATDs? Just asking, perhaps this would solve some of your ups and downs! .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi Holly, Seeing your numbers and the roller coaster ride you have been on, no wonder you are so frustrated!!! Holly, consider finding a new endo, it is obvious from your numbers this doctor does not know how to monitor someone on ATD's, and the constant up and down of what you are going through is insane! , on this list is going through the same thing with her endo and is seeking a new endo also. I believe that some endos do this intentionally to make you feel so crappy, then tell people that RAI is the only way to go...it is NOT! The fact that your body is reacting so well to the atd's tells me that remission for you is a great possibility, but you need an endo who knows what the heck they are doing! You hang tough Holly, take a look at the top docs list on about.com and really give serious thought to finding a doctor who knows what they are doing. Take care, you will get there Holly, you are responding...yours is a perfect example of why we end up adjusting our own meds! Jody _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi Holly, Seeing your numbers and the roller coaster ride you have been on, no wonder you are so frustrated!!! Holly, consider finding a new endo, it is obvious from your numbers this doctor does not know how to monitor someone on ATD's, and the constant up and down of what you are going through is insane! , on this list is going through the same thing with her endo and is seeking a new endo also. I believe that some endos do this intentionally to make you feel so crappy, then tell people that RAI is the only way to go...it is NOT! The fact that your body is reacting so well to the atd's tells me that remission for you is a great possibility, but you need an endo who knows what the heck they are doing! You hang tough Holly, take a look at the top docs list on about.com and really give serious thought to finding a doctor who knows what they are doing. Take care, you will get there Holly, you are responding...yours is a perfect example of why we end up adjusting our own meds! Jody _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi Holly, Seeing your numbers and the roller coaster ride you have been on, no wonder you are so frustrated!!! Holly, consider finding a new endo, it is obvious from your numbers this doctor does not know how to monitor someone on ATD's, and the constant up and down of what you are going through is insane! , on this list is going through the same thing with her endo and is seeking a new endo also. I believe that some endos do this intentionally to make you feel so crappy, then tell people that RAI is the only way to go...it is NOT! The fact that your body is reacting so well to the atd's tells me that remission for you is a great possibility, but you need an endo who knows what the heck they are doing! You hang tough Holly, take a look at the top docs list on about.com and really give serious thought to finding a doctor who knows what they are doing. Take care, you will get there Holly, you are responding...yours is a perfect example of why we end up adjusting our own meds! Jody _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Holly, Know what you mean! If I want to go to an endo, it's a minimum 35 min. trip down to next town where all the endos are located. By the time you figure in waiting, getting a baby sitter for the kids, the 10 minutes they spend with me (if that) and the $$$ they charge just to tell me to have RAI, it just wasn't worth it at this point. Maybe if I get worse it will, but currently I've just found an internal medicine doc in my town that has a sub specialty in thyroid diseases. So far he seems to be working out. He's the first who's been concerned about ME and not just me labs! So maybe you would be better served by a GP if he/she has enough knowledge about ATDs to monitor you. I know the impression I got from the endo I saw was that they were WAY too busy to fiddle around with my piddly thyroid disease. My new guy sees it as kind of a refreshing change of pace for him. Yeah, I kind of got the idea that your old doc didn't buy into the whole ATD option. It's disappointing, since docs shouldn't be biased about one treatment over another. Maybe one of the first things you should ask new doc in April is how he/she feels about ATD treatment. Perhaps you'll get an idea from that conversation about whether or not this new doc will be responsive to your dosage needs. Might not even be a bad idea before then to talk to your GP and see if he/she would feel comfortable monitoring you and making adjustments - it's worth a try. Or check if there's any other docs in your area who sub specialize in thyroid diseases or endocrinology. Perhaps this person could help. I just called referral services and asked for docs with those sub specialties. Seems like it's not so much the endo you necessarily need now as it is someone who is going to be fairly prompt about making dosage adjustments when you start going one way or the other. This would keep you on more of an even keel and avoid some of the wild ups and downs you had to go through. It also would be nice if the doctor actually got behind ATDs as treatment option instead of a " waste of your time " . I say if you can find a GP or local doc who can do that for you, you'd probably be better off than you are now. Good luck - hope you find a doc who'll work with you! Re: Holly > >Holly - > >I can't believe you haven't heard from your doctor on what to do yet! It >does look like that 5 mg 2x a day was about right, but what do I know? I'm >happy that you're feeling a little better and your heart rate has gone back >down since you've upped the dose a bit. I still can't believe it's taken >your doc so long to get back to you - they can't just tell you over the >phone what to do and send the letter as confirmation? Are you very attached >to this doctor? Is this the way he usually works? I'm just wondering if he's >not really " committed " to helping you get well with ATD therapy. It doesn't >sound like he's very responsive, which it seems you have to be with ATDs, >perhaps this is why so many docs don't like to offer them and prefer RAI. Do >you think you might be better off finding someone who is more willing to >monitor a patient on ATDs? Just asking, perhaps this would solve some of >your ups and downs! > > > >. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Holly, Know what you mean! If I want to go to an endo, it's a minimum 35 min. trip down to next town where all the endos are located. By the time you figure in waiting, getting a baby sitter for the kids, the 10 minutes they spend with me (if that) and the $$$ they charge just to tell me to have RAI, it just wasn't worth it at this point. Maybe if I get worse it will, but currently I've just found an internal medicine doc in my town that has a sub specialty in thyroid diseases. So far he seems to be working out. He's the first who's been concerned about ME and not just me labs! So maybe you would be better served by a GP if he/she has enough knowledge about ATDs to monitor you. I know the impression I got from the endo I saw was that they were WAY too busy to fiddle around with my piddly thyroid disease. My new guy sees it as kind of a refreshing change of pace for him. Yeah, I kind of got the idea that your old doc didn't buy into the whole ATD option. It's disappointing, since docs shouldn't be biased about one treatment over another. Maybe one of the first things you should ask new doc in April is how he/she feels about ATD treatment. Perhaps you'll get an idea from that conversation about whether or not this new doc will be responsive to your dosage needs. Might not even be a bad idea before then to talk to your GP and see if he/she would feel comfortable monitoring you and making adjustments - it's worth a try. Or check if there's any other docs in your area who sub specialize in thyroid diseases or endocrinology. Perhaps this person could help. I just called referral services and asked for docs with those sub specialties. Seems like it's not so much the endo you necessarily need now as it is someone who is going to be fairly prompt about making dosage adjustments when you start going one way or the other. This would keep you on more of an even keel and avoid some of the wild ups and downs you had to go through. It also would be nice if the doctor actually got behind ATDs as treatment option instead of a " waste of your time " . I say if you can find a GP or local doc who can do that for you, you'd probably be better off than you are now. Good luck - hope you find a doc who'll work with you! Re: Holly > >Holly - > >I can't believe you haven't heard from your doctor on what to do yet! It >does look like that 5 mg 2x a day was about right, but what do I know? I'm >happy that you're feeling a little better and your heart rate has gone back >down since you've upped the dose a bit. I still can't believe it's taken >your doc so long to get back to you - they can't just tell you over the >phone what to do and send the letter as confirmation? Are you very attached >to this doctor? Is this the way he usually works? I'm just wondering if he's >not really " committed " to helping you get well with ATD therapy. It doesn't >sound like he's very responsive, which it seems you have to be with ATDs, >perhaps this is why so many docs don't like to offer them and prefer RAI. Do >you think you might be better off finding someone who is more willing to >monitor a patient on ATDs? Just asking, perhaps this would solve some of >your ups and downs! > > > >. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Holly, Know what you mean! If I want to go to an endo, it's a minimum 35 min. trip down to next town where all the endos are located. By the time you figure in waiting, getting a baby sitter for the kids, the 10 minutes they spend with me (if that) and the $$$ they charge just to tell me to have RAI, it just wasn't worth it at this point. Maybe if I get worse it will, but currently I've just found an internal medicine doc in my town that has a sub specialty in thyroid diseases. So far he seems to be working out. He's the first who's been concerned about ME and not just me labs! So maybe you would be better served by a GP if he/she has enough knowledge about ATDs to monitor you. I know the impression I got from the endo I saw was that they were WAY too busy to fiddle around with my piddly thyroid disease. My new guy sees it as kind of a refreshing change of pace for him. Yeah, I kind of got the idea that your old doc didn't buy into the whole ATD option. It's disappointing, since docs shouldn't be biased about one treatment over another. Maybe one of the first things you should ask new doc in April is how he/she feels about ATD treatment. Perhaps you'll get an idea from that conversation about whether or not this new doc will be responsive to your dosage needs. Might not even be a bad idea before then to talk to your GP and see if he/she would feel comfortable monitoring you and making adjustments - it's worth a try. Or check if there's any other docs in your area who sub specialize in thyroid diseases or endocrinology. Perhaps this person could help. I just called referral services and asked for docs with those sub specialties. Seems like it's not so much the endo you necessarily need now as it is someone who is going to be fairly prompt about making dosage adjustments when you start going one way or the other. This would keep you on more of an even keel and avoid some of the wild ups and downs you had to go through. It also would be nice if the doctor actually got behind ATDs as treatment option instead of a " waste of your time " . I say if you can find a GP or local doc who can do that for you, you'd probably be better off than you are now. Good luck - hope you find a doc who'll work with you! Re: Holly > >Holly - > >I can't believe you haven't heard from your doctor on what to do yet! It >does look like that 5 mg 2x a day was about right, but what do I know? I'm >happy that you're feeling a little better and your heart rate has gone back >down since you've upped the dose a bit. I still can't believe it's taken >your doc so long to get back to you - they can't just tell you over the >phone what to do and send the letter as confirmation? Are you very attached >to this doctor? Is this the way he usually works? I'm just wondering if he's >not really " committed " to helping you get well with ATD therapy. It doesn't >sound like he's very responsive, which it seems you have to be with ATDs, >perhaps this is why so many docs don't like to offer them and prefer RAI. Do >you think you might be better off finding someone who is more willing to >monitor a patient on ATDs? Just asking, perhaps this would solve some of >your ups and downs! > > > >. > > > Quote Link to comment Share on other sites More sharing options...
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