Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 > Hi, my name is and i am 23 years old. I have a near total > thyroidectomy sceduled for June 30. The reason why is because > doctors found suspicious cells in two nodules, one on the right lobe > and one on the left lobe. If it is cancer, they say it is pappilary > carcinoma. If anybody has any words of wisdom let me know. Thanks Hi , I am new to the group too, but welcome, I have found out more information from this group than all my doctors. the only thing I would make sure of for your surgery is that you insist he take all your thyroid out. I had a nodule that was 2.4 cm on the right and a shadow on the left and told the dr. to take out the whole thyroid. He did not listen to me (suprise, suprise) and as a result I had surgery in April of 2002 in which he took out the right half with and then had the other half out 4 weeks ago. I am now starting diet from hell and will be going in for RAI the end of June. the surgery itself is not bad, I have had 11 surgeries and this one is one of the easiest, I think, even though you have to stay overnight in the hospital. Good luck and try not to worry too much, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 > Hi, my name is and i am 23 years old. I have a near total > thyroidectomy sceduled for June 30. The reason why is because > doctors found suspicious cells in two nodules, one on the right lobe > and one on the left lobe. If it is cancer, they say it is pappilary > carcinoma. If anybody has any words of wisdom let me know. Thanks Hi , I am new to the group too, but welcome, I have found out more information from this group than all my doctors. the only thing I would make sure of for your surgery is that you insist he take all your thyroid out. I had a nodule that was 2.4 cm on the right and a shadow on the left and told the dr. to take out the whole thyroid. He did not listen to me (suprise, suprise) and as a result I had surgery in April of 2002 in which he took out the right half with and then had the other half out 4 weeks ago. I am now starting diet from hell and will be going in for RAI the end of June. the surgery itself is not bad, I have had 11 surgeries and this one is one of the easiest, I think, even though you have to stay overnight in the hospital. Good luck and try not to worry too much, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 > Hi, my name is and i am 23 years old. I have a near total > thyroidectomy sceduled for June 30. The reason why is because > doctors found suspicious cells in two nodules, one on the right lobe > and one on the left lobe. If it is cancer, they say it is pappilary > carcinoma. If anybody has any words of wisdom let me know. Thanks Hi , I am new to the group too, but welcome, I have found out more information from this group than all my doctors. the only thing I would make sure of for your surgery is that you insist he take all your thyroid out. I had a nodule that was 2.4 cm on the right and a shadow on the left and told the dr. to take out the whole thyroid. He did not listen to me (suprise, suprise) and as a result I had surgery in April of 2002 in which he took out the right half with and then had the other half out 4 weeks ago. I am now starting diet from hell and will be going in for RAI the end of June. the surgery itself is not bad, I have had 11 surgeries and this one is one of the easiest, I think, even though you have to stay overnight in the hospital. Good luck and try not to worry too much, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Hi , Welcome to a great place for education and suppport~! I don't know about words of wisdom necessarily, but I was diagnosed at the age of 21. In your favor is your age and the fact that your doctor plans to take it all out the first time around. Stick around here and ask any questions that come to mind. Many of the >1200 folks here will search the (cyber) earth to help you. :-) Best wishes, son ThyCa Canton, OH 1965 TT, no RAI, hypoparathyroidism 1982 recurrence, RAI 176 mCi 2001 Clean Scan PTL~! > Hi, my name is and i am 23 years old. I have a near total > thyroidectomy sceduled for June 30. The reason why is because > doctors found suspicious cells in two nodules, one on the right lobe and one on the left lobe. If it is cancer, they say it is pappilary carcinoma. If anybody has any words of wisdom let me know. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Hi , Welcome to a great place for education and suppport~! I don't know about words of wisdom necessarily, but I was diagnosed at the age of 21. In your favor is your age and the fact that your doctor plans to take it all out the first time around. Stick around here and ask any questions that come to mind. Many of the >1200 folks here will search the (cyber) earth to help you. :-) Best wishes, son ThyCa Canton, OH 1965 TT, no RAI, hypoparathyroidism 1982 recurrence, RAI 176 mCi 2001 Clean Scan PTL~! > Hi, my name is and i am 23 years old. I have a near total > thyroidectomy sceduled for June 30. The reason why is because > doctors found suspicious cells in two nodules, one on the right lobe and one on the left lobe. If it is cancer, they say it is pappilary carcinoma. If anybody has any words of wisdom let me know. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Hi , Welcome to a great place for education and suppport~! I don't know about words of wisdom necessarily, but I was diagnosed at the age of 21. In your favor is your age and the fact that your doctor plans to take it all out the first time around. Stick around here and ask any questions that come to mind. Many of the >1200 folks here will search the (cyber) earth to help you. :-) Best wishes, son ThyCa Canton, OH 1965 TT, no RAI, hypoparathyroidism 1982 recurrence, RAI 176 mCi 2001 Clean Scan PTL~! > Hi, my name is and i am 23 years old. I have a near total > thyroidectomy sceduled for June 30. The reason why is because > doctors found suspicious cells in two nodules, one on the right lobe and one on the left lobe. If it is cancer, they say it is pappilary carcinoma. If anybody has any words of wisdom let me know. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2004 Report Share Posted October 2, 2004 Welcome . We'll be looking forward to your posts. Pat New to the group I just wanted to say hi and introduce myself to the group. My name is Walsh, and I am from Texas. I hope to get to all of you better in the near future. Walsh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Hello Theresa and welcome to another NYer! We have several in the group in different areas of NY, some in NYC, some in NY State. I was born/partially raised in NYC. I wish I could help. I suffer with socks and shoes on all the time. I find, quite honestly, that a real light sock drives me out of my mind.. that light touch is too much for me. I wear heavier socks. I am, however, constantly ripping off socks and shoes as I can't bear them anymore. Actually, the longer I have RSD, the better I am at keeping them on for longer periods.. I guess I have gotten used to it. I'm sure others will have much better suggestions.. Again, welcome. I'm sure you'll find as I do, that this is a wonderful, caring group of people who will help you in any way they can! Hugs, Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 - Welcome to the group and let's see if we can help you out about those socks. I also can't stand the really light socks andcan't wear a shoe that has a back on it. I settle for Brikenstocks (easy to kick off under the desk and slip back on) and a medium soft sock. It makes it kinda tough here in the Massachusetts winter but whoever said it would be easy. A warm welcome and I hope that we get a chance to know you better. Barbara (a transplant from Syracuse) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Welcome to the group. It is a wonderful group of individuals and you will make friends that understand what you are going through. I read your request for info about shoes, etc. My RSD started in my left ankle and had moved to my left and right leg and my left hand. I just finished having nerve blocks for my hand and I have a Spinal Cord Stimulator for my legs and back. I am the " Bionic Woman " and still live with pain every day. I have found tow catalogs that have helped me tremendously over the past two years. You can email them for catalogs. I just ordered me some shoes today. The catalogs are listed below: www.footsmart.com 1- www.drleonards.com 1- If you ever need to talk just email me or join us on Yahoo Messenger. I get up early so when I can't sleep that's where I go to see if anyone else is up also. It's amazing how we all have so much in common. Welcome again and I hope this information is helpful. Debbie Ducote > > > Date: 2004/12/03 Fri PM 06:31:10 EST > To: RSD-CRPSofAmerica > Subject: New to the group > > Hey folks, I guess I am the new kid on the block. I filled out my " profile " but have no idea where it is?! Anyway, I was diagnosed with RSD 9/04 after suffering a severe sprained ankle 8/04. I have been through a lot in a short period of time (... all in the profile). The reason I write the group is to get some practical information that my medical providers can't seem to provide: my RSD started in my ankle/foot and moved rapidly into my leg. I am having a horrible time finding socks and shoes that feel relatively ok on my feet. Any suggestions? Looking forward to the new family here! Theresa in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Glad to meet you Theresa, I don't know where your profile is.... I looked in files under Theresa. I'd like to know more about you, your experience or anything you'd like to tell so if you want to repeat yourself here I'd appreciate it. Your question about sock and shoe is a good one. The first year I had RSD I couldn't walk but had to put something on my foot. The slightest pressure seemed unbearable. I ended up using my husband tennis shoe to go to the doctor in the freezing temperatures of winter. I also used thick socks and cut the restricting band off so it just barely laid around my lower calf. I couldn't stand anything else. Then I used a soft ace bandage to gently wrap around the shoe top and my ankle on up the lower leg. It seemed to help with the sensitivity to air that penetrated the thick sock (I don't know how!) A couple of years later I eventually bought soft flats that were two sizes bigger than my feet in order to accommodate wearing a sock and allow for " slop " room. Since I just recently had a recurrence of RSD after a 4 year remission I couldn't wear any of my comfortable tennis shoes. I realized I had to go out and buy a bigger wider shoe once again. It took me trying on countless pairs and it took two trips because I didn't have the endurance but I found a pair that seems to be kind to my feet since the RSD has spread to both now. I don't know if this will give you any ideas. I have found this group to be so very kind hearted and ready to help in anyway. I hope you hang around and find it to be true for you, too. I keep a large wall map for my " pin pals " and would like to add you if you would like. Just give me your town in New York and that will make 5 for New York! With love, Lyn in Central Oregon (Bend/Redmond) " seekingspirit03 " <seekingspirit03@y...> wrote: > > > Hey folks, I guess I am the new kid on the block. I filled out > my " profile " but have no idea where it is?! Anyway, I was diagnosed > with RSD 9/04 after suffering a severe sprained ankle 8/04. I have > been through a lot in a short period of time (... all in the > profile). The reason I write the group is to get some practical > information that my medical providers can't seem to provide: my RSD > started in my ankle/foot and moved rapidly into my leg. I am having > a horrible time finding socks and shoes that feel relatively ok on my > feet. Any suggestions? Looking forward to the new family here! > Theresa in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 HELLO THERESA WELCOME AND I LIVE IN NEW YORK ALSO PLEASE LET ME KNOW WHERE YOU LIVE IN NEWYORK WE MIGHT BE CLOSE!!! I HAVE RSD IN ARMS LEGS ,,FACE BACK NECK SCALP ...IT KINDA IS ALL OVER ...IF YOU WOULD LIKE TO E-MAIL ME MY E-MAIL IS patches13033@... so please get back to me if you would like hugs to you pamseekingspirit03 wrote: Hey folks, I guess I am the new kid on the block. I filled out my "profile" but have no idea where it is?! Anyway, I was diagnosed with RSD 9/04 after suffering a severe sprained ankle 8/04. I have been through a lot in a short period of time (... all in the profile). The reason I write the group is to get some practical information that my medical providers can't seem to provide: my RSD started in my ankle/foot and moved rapidly into my leg. I am having a horrible time finding socks and shoes that feel relatively ok on my feet. Any suggestions? Looking forward to the new family here!Theresa in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 HELLO THERESA WELCOME AND I LIVE IN NEW YORK ALSO PLEASE LET ME KNOW WHERE YOU LIVE IN NEWYORK WE MIGHT BE CLOSE!!! I HAVE RSD IN ARMS LEGS ,,FACE BACK NECK SCALP ...IT KINDA IS ALL OVER ...IF YOU WOULD LIKE TO E-MAIL ME MY E-MAIL IS patches13033@... so please get back to me if you would like hugs to you pamseekingspirit03 wrote: Hey folks, I guess I am the new kid on the block. I filled out my "profile" but have no idea where it is?! Anyway, I was diagnosed with RSD 9/04 after suffering a severe sprained ankle 8/04. I have been through a lot in a short period of time (... all in the profile). The reason I write the group is to get some practical information that my medical providers can't seem to provide: my RSD started in my ankle/foot and moved rapidly into my leg. I am having a horrible time finding socks and shoes that feel relatively ok on my feet. Any suggestions? Looking forward to the new family here!Theresa in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Hi Tifani- I also have a hard of hearing 11 year old daughter. She is moderate to severe in one ear and slight to moderate in the other. Wears aides in both. Welcome to the group! Jan Mother of (11) with aides 5th grade (15) Freshman (17) Senior Wife of poor Bill who has to live with all of us girls! _____ From: Listen-Up [mailto:Listen-Up ] On Behalf Of Tifani Gercama Sent: Saturday, April 01, 2006 9:14 PM To: Listen-Up Subject: new to the group Hi...just a quick introduction. I have an 11 year old hard of hearing son, and am looking for other parents of hard of hearing children to get to know. --------------------------------- Enrich your life at Yahoo! Canada Finance Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Hi Tifani- I also have a hard of hearing 11 year old daughter. She is moderate to severe in one ear and slight to moderate in the other. Wears aides in both. Welcome to the group! Jan Mother of (11) with aides 5th grade (15) Freshman (17) Senior Wife of poor Bill who has to live with all of us girls! _____ From: Listen-Up [mailto:Listen-Up ] On Behalf Of Tifani Gercama Sent: Saturday, April 01, 2006 9:14 PM To: Listen-Up Subject: new to the group Hi...just a quick introduction. I have an 11 year old hard of hearing son, and am looking for other parents of hard of hearing children to get to know. --------------------------------- Enrich your life at Yahoo! Canada Finance Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2006 Report Share Posted April 2, 2006 Hi Tifani- I also have a hard of hearing 11 year old daughter. She is moderate to severe in one ear and slight to moderate in the other. Wears aides in both. Welcome to the group! Jan Mother of (11) with aides 5th grade (15) Freshman (17) Senior Wife of poor Bill who has to live with all of us girls! _____ From: Listen-Up [mailto:Listen-Up ] On Behalf Of Tifani Gercama Sent: Saturday, April 01, 2006 9:14 PM To: Listen-Up Subject: new to the group Hi...just a quick introduction. I have an 11 year old hard of hearing son, and am looking for other parents of hard of hearing children to get to know. --------------------------------- Enrich your life at Yahoo! Canada Finance Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2006 Report Share Posted April 3, 2006 I'm sure it really helps to have your brother go first. I've talked to Ben about them, but he assures me his hearing aids work just fine! I know I've said this before, but I have no doubt he'll get one at some point; it's just a matter of when. So far, the aids have worked for him, but I know the CI makes it that much easier, and I know he'll need that. Keep us posted! Stefanie on 4/3/06 4:25 PM, Barbara Mellert at Barbara.T.Mellert@... wrote: > We're excited - Sam's excited! Unlike Tom (my drama king), Sam's pretty > stoic but really wants one now that he sees how well Tom's done with > it. It's scheduled for May 10 - so much to do between now and then! > > Barbara > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 > > My name is Beth. My experience with breast cancer began in August > of 2002 when my sister lost her battle with cancer found in her milk > ducts. She was the first woman in our family (that we know of). > She had very dense breasts so even though she had her yearly exams > and performed SBE it wasn't found until it showed up on one of her > mammograms. They did a lumpectomy however the cancer came back > within a month and they were unable to curb it. She was only 56 – > she died six days after her birthday. > > During my last yearly mammo I developed some micro calcifications in > my left breast along the chest wall. I went back for more films > this time they did a magnification view (or should I say several > views as it was difficult for them to get the right picture due to > the fact that my calcifications are on my check wall). They found 4 > all round in shape with the appearance of being benign and to come > back in six months for more of the same type of mammograms. After > speaking to my doctor, we agreed that I consult with a surgeon. I > have an appointment with her Friday Oct 20th to discuss the latest > films and to have a second set of eyes look at the films. > > I've ready that the only true way to know if micro calcifications > are benign or malignant is with a biopsy so I'm hoping that is what > this surgeon will suggest and whatever the result put my mind at > ease. > Good Luck, I am having a biopsy next week- not looking forward to it since I'm recovering from a spinal fusion. I'm just ready to get it over with and like you get it off my mind. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 > > My name is Beth. My experience with breast cancer began in August > of 2002 when my sister lost her battle with cancer found in her milk > ducts. She was the first woman in our family (that we know of). > She had very dense breasts so even though she had her yearly exams > and performed SBE it wasn't found until it showed up on one of her > mammograms. They did a lumpectomy however the cancer came back > within a month and they were unable to curb it. She was only 56 – > she died six days after her birthday. > > During my last yearly mammo I developed some micro calcifications in > my left breast along the chest wall. I went back for more films > this time they did a magnification view (or should I say several > views as it was difficult for them to get the right picture due to > the fact that my calcifications are on my check wall). They found 4 > all round in shape with the appearance of being benign and to come > back in six months for more of the same type of mammograms. After > speaking to my doctor, we agreed that I consult with a surgeon. I > have an appointment with her Friday Oct 20th to discuss the latest > films and to have a second set of eyes look at the films. > > I've ready that the only true way to know if micro calcifications > are benign or malignant is with a biopsy so I'm hoping that is what > this surgeon will suggest and whatever the result put my mind at > ease. > Good Luck, I am having a biopsy next week- not looking forward to it since I'm recovering from a spinal fusion. I'm just ready to get it over with and like you get it off my mind. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 I wish you and your son the best! What a story. Please give him a big hug from ALL of us and tell him how proud we all are of him. You take care of yourself too, girlfriend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 I wish you and your son the best! What a story. Please give him a big hug from ALL of us and tell him how proud we all are of him. You take care of yourself too, girlfriend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 I wish you and your son the best! What a story. Please give him a big hug from ALL of us and tell him how proud we all are of him. You take care of yourself too, girlfriend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 Hi, I " m new here, a 6+ year post op thyroidectomy patient, and 6+ years of struggles. CAn't seem to regulate, at 182mcg of Levoxyl, i am going hypo, at 185 mcg. I am going hyper?? Endo's are asses, can't look beyond the labs, any ideas?? Frustrated and discouraged, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 are they checking your thyroid hormone levels (Free T4 and Free T3) or only the TSH levels? TSH has VERY little value to us once we are on thyroid hormone replacment... Much more important is how your thyroid hormone levels are and most especially if your body has sufficient levels of T3 (one of the active thyroid hormones). You are on Levoxyl, that's a synthetic T4 only hormone. With it you need to be sure that your body is able to process it to usable form and if your body is converting T4 to T3 efficiently. I'm not sure how far you've gotten into your research of thyroid hormones and such, I've got a web page up that runs through some of the basics of hormones, labs and such..... you can skim through that, if you like, if what I'm talking about is new to you.... www.thyrophoenix.com/thyroid_101.htm What was your original diagnosis, the reason for your thyroidectomy? What have your labs been showing as far as what they are checking, tests they've run, and your levels and the labs ranges? If you can, please post that so that we can see. Is the doc telling you are hyper after seeing your labs, or are you FEELING hyper? If the doc is only testing TSH and basing your hyper/hypo status on that number, and is using outdated lab ranges (many docs still are) or doesn't understand what the numbers indicate (many do not) you may not be going hyper at all at 185... T4 (Levoxyl, Synthroid and all the other synthetic T4s) will suppress TSH levels. Falsely showing that the person has sufficient levels of hormone if TSH is the only test being run. So it's even more important to have the thyroid hormones (Free T4 and Free T3) tested when on a T4 only med... there is no other way of knowing how your body is ACTUALLY responding to the meds without those numbers related to each other AND your symptoms. How is your resting pulse rate? Have they ever discussed with you how to best take your Levoxyl? On an empty stomach.... ? Topper () Yahoo IM: toppertwo On Wed, 29 Nov 2006 12:29:07 -0000 " grrich2763 " writes: > Hi, I " m new here, a 6+ year post op thyroidectomy patient, and 6+ > years of struggles. CAn't seem to regulate, at 182mcg of Levoxyl, i > am > going hypo, at 185 mcg. I am going hyper?? Endo's are asses, can't > look beyond the labs, any ideas?? > Frustrated and discouraged, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 are they checking your thyroid hormone levels (Free T4 and Free T3) or only the TSH levels? TSH has VERY little value to us once we are on thyroid hormone replacment... Much more important is how your thyroid hormone levels are and most especially if your body has sufficient levels of T3 (one of the active thyroid hormones). You are on Levoxyl, that's a synthetic T4 only hormone. With it you need to be sure that your body is able to process it to usable form and if your body is converting T4 to T3 efficiently. I'm not sure how far you've gotten into your research of thyroid hormones and such, I've got a web page up that runs through some of the basics of hormones, labs and such..... you can skim through that, if you like, if what I'm talking about is new to you.... www.thyrophoenix.com/thyroid_101.htm What was your original diagnosis, the reason for your thyroidectomy? What have your labs been showing as far as what they are checking, tests they've run, and your levels and the labs ranges? If you can, please post that so that we can see. Is the doc telling you are hyper after seeing your labs, or are you FEELING hyper? If the doc is only testing TSH and basing your hyper/hypo status on that number, and is using outdated lab ranges (many docs still are) or doesn't understand what the numbers indicate (many do not) you may not be going hyper at all at 185... T4 (Levoxyl, Synthroid and all the other synthetic T4s) will suppress TSH levels. Falsely showing that the person has sufficient levels of hormone if TSH is the only test being run. So it's even more important to have the thyroid hormones (Free T4 and Free T3) tested when on a T4 only med... there is no other way of knowing how your body is ACTUALLY responding to the meds without those numbers related to each other AND your symptoms. How is your resting pulse rate? Have they ever discussed with you how to best take your Levoxyl? On an empty stomach.... ? Topper () Yahoo IM: toppertwo On Wed, 29 Nov 2006 12:29:07 -0000 " grrich2763 " writes: > Hi, I " m new here, a 6+ year post op thyroidectomy patient, and 6+ > years of struggles. CAn't seem to regulate, at 182mcg of Levoxyl, i > am > going hypo, at 185 mcg. I am going hyper?? Endo's are asses, can't > look beyond the labs, any ideas?? > Frustrated and discouraged, > Quote Link to comment Share on other sites More sharing options...
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