Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 Hi Ruth, I am sorry to hear you are going through a rough time right now. That is not unusual after RAI, and it can take months for the levels to come down, so hang in there. Do you know what was the dose of your RAI? Has your doctor given you medication to help with the symptoms? Are you able to take a beta blocker or ATD, until your levels come down? It may help us to have an idea of where you're at by posting your lab results, with the ranges for your lab. It is important to keep copies of your lab work from here on, so you can see for yourself what is going on. It can sometimes be hard to tell otherwise. Do you have any eye involvement? As for the eyes, one medication I've heard of to help during the post-RAI phase is a course of prednisone. Perhaps it can help while antibodies are being released. Also, avoid iodine, stress, and cigarette smoke. A lot of people find that flaxseed oil (a good source of Omega 3) produces good results for their eyes (1 Tbsp per 100 lbs of body weight). Lubricating eyes also helps to protect them, if they feel dry or irritated; artificial tears are good. Deep breathing and any activities you find relaxing are a must right now! Give yourself permission to do whatever you can to reduce your stress, and pamper yourself. Let us know how you're doing. At 06:57 AM 10/26/2003, you wrote: >Hi, my name is Ruth and I'm new here. Really looking for some support >and advise. Been reading alot and seems like RAI is not such a good >ideal huh? Too late for me! I was rushed right off to get it, Doc >said I had no chance of remission d/t a few reasons she gave so I >could only be on meds for a short period at a time. It has been 2 >months now and no change in my blood work (sky high levels) I know it >can take up to 6 months but I was under the impression that symptoms >would start getting better in a few weeks. The thing I am worried >about now, does the RAI really do more damage to the eyes? I feel >like I'm at the end of my rope. Also if anyone has any pointers >on how I can control my panic attacks and anger spells I would love >to hear from you, I sure don't like the person I have become. >Thanks to all... Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 Hi Ruth, Do you happen to have the normal ranges for your lab on those results? Different labs have different ranges, so it is difficult to tell where you're at without them. Also, if you had T4, that was probably not a Free T4, which is best (along with Free T3) for knowing your current thyroid levels. We often need to specifically request these tests to be run. The other " T " tests are outdated and less accurate for our purposes. Don't worry if things don't seem clear when it comes to this lab stuff right now -- with repetition, it will soon come into focus. T4 is produced by the thyroid, and converts to T3 at the cellular level. If they are high, you are hyper. TSH is thyroid stimulating hormone, and is released by the pituitary to stimulate the thyroid to produce more hormone when the body needs it; if you are high on TSH, you are hypO. TSH can be misleading when antibodies are present, so we focus on the FT3 and FT4, to try to keep them in the middle to upper middle of the normal range (or where you feel best, as everyone has a slightly different " set point " ). Cognitive therapy is great, and that is my primary approach to treatment in my practice (thanks Fay!). But if the cause is physiological, there is only so much one can do to calm the symptoms. I found that when I was hyper, I did not have control over my heart pounding, despite my efforts. It can help, but I really think you could use some medication. Will your doctor prescribe something? It is worthwhile to continue to take it easy and relax, but don't be down on yourself if you aren't very successful at it right now (I mean, if you took an amphetamine, what would you expect?). Most people find that the best source of Omega 3 is flaxseed oil, which should be available in health food stores or vitamin stores. It should be refrigerated and in a dark bottle. I think the oil degrades rather quickly, so I'd go for a smaller bottle. I would also steer away from capsules, as you would need to take a lot more of them to get the same amount as in the oil. Omega 3 can be found in eggs that are labeled to contain it. But the amount is less than in the oil. At 01:54 PM 10/26/2003, you wrote: >Hi , Thanks for the fast respond! I'm kinda dumb with all this lab >stuff...but I do know that last weeks visit: >T4 was 19.1 and >TSH was -0.02 I haven't been to the eye dr. yet. My eyes are really >sensative to the sun, and by the end of the evening are pretty red, vision >is pretty blurred, mostly when I get up in the mornings oh and I blink alot. >Maybe I should make that appointment. >Where do I find Omega3 or flaxseed? >I have tried to relax lately, not good at it though. I pend most of my time >trying to makes things right at home and seem to just go in circles. I can't >wait until I comfort others. >Thanks!!! Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 Hi , Thanks for the fast respond! I'm kinda dumb with all this lab stuff...but I do know that last weeks visit: T4 was 19.1 and TSH was -0.02 I haven't been to the eye dr. yet. My eyes are really sensative to the sun, and by the end of the evening are pretty red, vision is pretty blurred, mostly when I get up in the mornings oh and I blink alot. Maybe I should make that appointment. Where do I find Omega3 or flaxseed? I have tried to relax lately, not good at it though. I pend most of my time trying to makes things right at home and seem to just go in circles. I can't wait until I comfort others. Thanks!!! Ruth Re: New and confused > Hi Ruth, > I am sorry to hear you are going through a rough time right now. That is > not unusual after RAI, and it can take months for the levels to come down, > so hang in there. Do you know what was the dose of your RAI? Has your > doctor given you medication to help with the symptoms? Are you able to take > a beta blocker or ATD, until your levels come down? > > It may help us to have an idea of where you're at by posting your lab > results, with the ranges for your lab. It is important to keep copies of > your lab work from here on, so you can see for yourself what is going on. > It can sometimes be hard to tell otherwise. Do you have any eye > involvement? As for the eyes, one medication I've heard of to help during > the post-RAI phase is a course of prednisone. Perhaps it can help while > antibodies are being released. Also, avoid iodine, stress, and cigarette > smoke. A lot of people find that flaxseed oil (a good source of Omega 3) > produces good results for their eyes (1 Tbsp per 100 lbs of body weight). > Lubricating eyes also helps to protect them, if they feel dry or irritated; > artificial tears are good. > > Deep breathing and any activities you find relaxing are a must right now! > Give yourself permission to do whatever you can to reduce your stress, and > pamper yourself. > > Let us know how you're doing. > > > > At 06:57 AM 10/26/2003, you wrote: > >Hi, my name is Ruth and I'm new here. Really looking for some support > >and advise. Been reading alot and seems like RAI is not such a good > >ideal huh? Too late for me! I was rushed right off to get it, Doc > >said I had no chance of remission d/t a few reasons she gave so I > >could only be on meds for a short period at a time. It has been 2 > >months now and no change in my blood work (sky high levels) I know it > >can take up to 6 months but I was under the impression that symptoms > >would start getting better in a few weeks. The thing I am worried > >about now, does the RAI really do more damage to the eyes? I feel > >like I'm at the end of my rope. Also if anyone has any pointers > >on how I can control my panic attacks and anger spells I would love > >to hear from you, I sure don't like the person I have become. > >Thanks to all... Ruth > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 Hi again, wow I can't believe all this great help. This is what my notes say and by the awy I am hyper. T4 Total 19.1 normal 4.5- 10.9 TSH <0.02 normal 0.35 - 5.5 My percription that she gave me for next 6 weeks says TSH & Free T4 Thank You sooooo much Ruth Re: New and confused > Hi Ruth, > Do you happen to have the normal ranges for your lab on those results? > Different labs have different ranges, so it is difficult to tell where > you're at without them. Also, if you had T4, that was probably not a Free > T4, which is best (along with Free T3) for knowing your current thyroid > levels. We often need to specifically request these tests to be run. The > other " T " tests are outdated and less accurate for our purposes. > > Don't worry if things don't seem clear when it comes to this lab stuff > right now -- with repetition, it will soon come into focus. T4 is produced > by the thyroid, and converts to T3 at the cellular level. If they are high, > you are hyper. TSH is thyroid stimulating hormone, and is released by the > pituitary to stimulate the thyroid to produce more hormone when the body > needs it; if you are high on TSH, you are hypO. TSH can be misleading when > antibodies are present, so we focus on the FT3 and FT4, to try to keep them > in the middle to upper middle of the normal range (or where you feel best, > as everyone has a slightly different " set point " ). > > Cognitive therapy is great, and that is my primary approach to treatment in > my practice (thanks Fay!). But if the cause is physiological, there is only > so much one can do to calm the symptoms. I found that when I was hyper, I > did not have control over my heart pounding, despite my efforts. It can > help, but I really think you could use some medication. Will your doctor > prescribe something? It is worthwhile to continue to take it easy and > relax, but don't be down on yourself if you aren't very successful at it > right now (I mean, if you took an amphetamine, what would you expect?). > > Most people find that the best source of Omega 3 is flaxseed oil, which > should be available in health food stores or vitamin stores. It should be > refrigerated and in a dark bottle. I think the oil degrades rather quickly, > so I'd go for a smaller bottle. I would also steer away from capsules, as > you would need to take a lot more of them to get the same amount as in the > oil. Omega 3 can be found in eggs that are labeled to contain it. But the > amount is less than in the oil. > > > > > At 01:54 PM 10/26/2003, you wrote: > >Hi , Thanks for the fast respond! I'm kinda dumb with all this lab > >stuff...but I do know that last weeks visit: > >T4 was 19.1 and > >TSH was -0.02 I haven't been to the eye dr. yet. My eyes are really > >sensative to the sun, and by the end of the evening are pretty red, vision > >is pretty blurred, mostly when I get up in the mornings oh and I blink alot. > >Maybe I should make that appointment. > >Where do I find Omega3 or flaxseed? > >I have tried to relax lately, not good at it though. I pend most of my time > >trying to makes things right at home and seem to just go in circles. I can't > >wait until I comfort others. > >Thanks!!! Ruth > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 Hi Ruth, Yes, you are quite hyper now, as I thought, but wanted to get an idea of how much. I find it hard to believe that the doc didn't prescribe some medication. What is up with that? It is good that you will be tested for Free T4. I would request to also be tested for Free T3, because after RAI, people may have conversion problems (from T4 to T3). Free T3 is a more expensive test, so sometimes the doctors avoid doing it, but mine is cooperative, so maybe yours will do it, too. BTW, the range for the TSH test has been updated, although many labs still use the old range. A TSH of 3 should be at the upper limit. My lab hasn't updated their range either. Something to file away for the future. Hopefully the doctor will give you some meds, so you can get some relief soon. Let us know. At 03:38 PM 10/26/2003, you wrote: >Hi again, wow I can't believe all this great help. >This is what my notes say and by the awy I am hyper. >T4 Total 19.1 normal 4.5- 10.9 >TSH <0.02 normal 0.35 - 5.5 >My percription that she gave me for next 6 weeks says TSH & Free T4 >Thank You sooooo much >Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 THANK YOU SO MUCH FOR THIS RESPONCE! It finally gave me a quick breakdown as to what all these numbers mean in a way I could understand it. I went to the ER this summer with major swelling for not apparent reason. Blood work was done and my family doctor sent me to an endo. Of course I was not able to get an appointment till Aug, so I went all summer feeling like crap with only being told to stay clam. How you can stay clam when feeling like crap is beyond me. I've seen the endo twice, which I might add, I am not getting real good feelings from my visits. The second time when I asked a question, he told me it was all part of the disease. I asked him what disease because I had never been told anything about any disease. He just looked at me like I was nuts and said the graves disease. I was totally shocked because I really thought I just had a mild problem with my thyroid, not a disease! Now, I am trying to make since of all this... June 26 lab results: T4 14.6 TSH .03 T3 241 Aug 4 given 10mg methimazole once per day Sept 26 lab results: T4 7.7 TSH 18.65 Oct 4 taken off meds and ordered labs to be done in 4 weeks does it make since for me to be taken off all meds? I am really having a hard time getting warm and our weather hasn't even been bad lately! I'm falling off to sleep in the middle of the day, its driving me crazy! When I visited the doctor I was telling him how my eyes were itching really bad and tearing up all the time. He told me to use the artificial tears and if it kept up we'd need to keep an eye on it. Now I'm reading how serious all this is and I'm not sure what to do! Help! Cindy from MI Re: New and confused Hi Ruth, Do you happen to have the normal ranges for your lab on those results? Different labs have different ranges, so it is difficult to tell where you're at without them. Also, if you had T4, that was probably not a Free T4, which is best (along with Free T3) for knowing your current thyroid levels. We often need to specifically request these tests to be run. The other " T " tests are outdated and less accurate for our purposes. Don't worry if things don't seem clear when it comes to this lab stuff right now -- with repetition, it will soon come into focus. T4 is produced by the thyroid, and converts to T3 at the cellular level. If they are high, you are hyper. TSH is thyroid stimulating hormone, and is released by the pituitary to stimulate the thyroid to produce more hormone when the body needs it; if you are high on TSH, you are hypO. TSH can be misleading when antibodies are present, so we focus on the FT3 and FT4, to try to keep them in the middle to upper middle of the normal range (or where you feel best, as everyone has a slightly different " set point " ). Cognitive therapy is great, and that is my primary approach to treatment in my practice (thanks Fay!). But if the cause is physiological, there is only so much one can do to calm the symptoms. I found that when I was hyper, I did not have control over my heart pounding, despite my efforts. It can help, but I really think you could use some medication. Will your doctor prescribe something? It is worthwhile to continue to take it easy and relax, but don't be down on yourself if you aren't very successful at it right now (I mean, if you took an amphetamine, what would you expect?). Most people find that the best source of Omega 3 is flaxseed oil, which should be available in health food stores or vitamin stores. It should be refrigerated and in a dark bottle. I think the oil degrades rather quickly, so I'd go for a smaller bottle. I would also steer away from capsules, as you would need to take a lot more of them to get the same amount as in the oil. Omega 3 can be found in eggs that are labeled to contain it. But the amount is less than in the oil. At 01:54 PM 10/26/2003, you wrote: >Hi , Thanks for the fast respond! I'm kinda dumb with all this lab >stuff...but I do know that last weeks visit: >T4 was 19.1 and >TSH was -0.02 I haven't been to the eye dr. yet. My eyes are really >sensative to the sun, and by the end of the evening are pretty red, vision >is pretty blurred, mostly when I get up in the mornings oh and I blink alot. >Maybe I should make that appointment. >Where do I find Omega3 or flaxseed? >I have tried to relax lately, not good at it though. I pend most of my time >trying to makes things right at home and seem to just go in circles. I can't >wait until I comfort others. >Thanks!!! Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Hi Judi, Welcome to the group. First, it usually takes a while for your posts to go through when you first join. The moderator needs to review them before allowing them to go through and he works full-time. I know that there are a few people on the group who have been to CHOP. Hopefully one of them will respond to you as well (Jodi are you out there??). There really isn't a genetic test for RSS. In 10% of cases there is uniparental disomy on chromosome 7, but in the other 90% of cases it is a clinical diagnosis. My son has a gtube, so if you have any questions feel free to post them or email me directly. We do not have any asymetry issues, so I can't help you there. Good luck, Judith, Steve, (RSS) and (non RSS) almost 4 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Hi Judi. Welcome to the group here. I have a 19 month old boy, . He has recently been diagnosed with RSS. He does have some assymetery, and from what I understand, the assymetery doesn't get any worse as time goes on. Anyone know this for sure, though?? 's assymetery is his left eye is smaller than his right (looks like a lazy eye), he has some in his mouth, and his left foot is smaller than his right. I think he might have some slight difference in his legs, but not much. Can you tell us more about your daughter? How much does she weigh now? How long is she? Have you looked at the photo section on this sight? Does she resemble any of the kids? Well, I must go. I will try to write more later. But, any extra info. you can give us about her would help all of us give you more info., too. ) Take care and welcome, Jodi R. IUGR/RSS > HI. My name is Judi and I am new to this group. My daughter > is nine months old and I am pretty sure she has RSS. I have > struggled to get her to eat since day one. She has been through many > tests, all negative, but has still not gained adequate weight. I > took her to a feeding specialist and she suggested testing for RSS. > She has the cafe aulait marks, overlapping toes as well as a few > other symptoms. Her symetry appears ok as of right now. My ped > thinks it a mild case. I am so relieved that I finally think she > will be diagnosed. She is scheduled for a feeding tube and genetic > eval next week at Childrens Hospital in Philly. I have a question > about the symetry aspect of the syndrome. Does the symetry get worse > over time or can I feel safe knowing that if she is semi symetrical > now that it will last? Please if anyone knows this info,I would love > to hear it. Much thanks and prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 > Hi Judi, > > Welcome to the group. First, it usually takes a while for your posts > to go through when you first join. The moderator needs to review > them before allowing them to go through and he works full-time. > > I know that there are a few people on the group who have been to > CHOP. Hopefully one of them will respond to you as well (Jodi are > you out there??). > > There really isn't a genetic test for RSS. In 10% of cases there is > uniparental disomy on chromosome 7, but in the other 90% of cases it > is a clinical diagnosis. > > My son has a gtube, so if you have any questions feel free to post > them or email me directly. > > We do not have any asymetry issues, so I can't help you there. > > Good luck, > > Judith, Steve, (RSS) and (non RSS) almost 4 year old > twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Hey Jodi My daughter is 12 lbs and 25.6 inches long. I have struggled with the feedings her whole life. As far as her development goes, she has always been ahead in her milestones. She rolled over at three months, sat up at five months, and now cruises the furniture at nine months. I did see some posts about delayed development in RSS. That is not always the case right? It has been stressful on my whole family. My two year old boy is at the other end of the spectrum. He is 34 lbs and 37 inches. So I guess after feeding him and then I figured that something was up with her. Everyone kept telling me she would catch up, but she never has. Thanks for the info. > > HI. My name is Judi and I am new to this group. My daughter > > is nine months old and I am pretty sure she has RSS. I have > > struggled to get her to eat since day one. She has been through > many > > tests, all negative, but has still not gained adequate weight. I > > took her to a feeding specialist and she suggested testing for RSS. > > She has the cafe aulait marks, overlapping toes as well as a few > > other symptoms. Her symetry appears ok as of right now. My ped > > thinks it a mild case. I am so relieved that I finally think she > > will be diagnosed. She is scheduled for a feeding tube and genetic > > eval next week at Childrens Hospital in Philly. I have a question > > about the symetry aspect of the syndrome. Does the symetry get > worse > > over time or can I feel safe knowing that if she is semi symetrical > > now that it will last? Please if anyone knows this info,I would > love > > to hear it. Much thanks and prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 ---Thanks for the info and support with the g-tube. Judi In RSS-Support , " Sidny27 " wrote: > Hi Judi, > > Welcome to the group. First, it usually takes a while for your posts > to go through when you first join. The moderator needs to review > them before allowing them to go through and he works full-time. > > I know that there are a few people on the group who have been to > CHOP. Hopefully one of them will respond to you as well (Jodi are > you out there??). > > There really isn't a genetic test for RSS. In 10% of cases there is > uniparental disomy on chromosome 7, but in the other 90% of cases it > is a clinical diagnosis. > > My son has a gtube, so if you have any questions feel free to post > them or email me directly. > > We do not have any asymetry issues, so I can't help you there. > > Good luck, > > Judith, Steve, (RSS) and (non RSS) almost 4 year old > twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Hi Judi- Welcome to our group. It's very supportive and informative. My daughter Pippin 13months has asymetry but it has become more noticable as she gotten bigger and gaining weight since her GT in March. But from what I've learned (on this site), is you have it when you're born. She has it in her eyes, legs, and arms. My Ped & I are the only ones who has noticed her eyes, but I'm the Mommy with her 24/7. Good luck hope to get to " know " you and your daughter better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Hj judi! my name is jodie and my son christopher goes to chop as well. we will be there next tues. for an mri when will you be going and who are you seeing? i would loved to meet up with you if possible. you can email privately if you wish it is jlcals2003@... as far as the asymentry goes i only know that christophers legs were off by 1/2 " when he was born and now they are only about 1cm off. i dont know if it will cont. to change but maybe some else here knows. hope to hear from you. jodie (nicholas-5 nonrss, christopher-3 rss 22lbs 33 " , johnathon-6m nonrss) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 hi judi! its the jodie with christopher. i fugured i would tell you first there are a couple of jodis on this list serve so hope we dont confuse you!christopher was always on target wuth his milestones as well. he is 3 and only weighs 22lbs and is 33 " . i know what you mean too, my 5 yr old is 45 lbs and 47 " tall and my almost 7 month old is about 20 lbs and 28 " tall. jodie (nicholas-5 nonrss, christopher-3 rss, johnathon 6m nonrss) Quote Link to comment Share on other sites More sharing options...
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