Guest guest Posted May 18, 2002 Report Share Posted May 18, 2002 Ralph~ Welcome to the group. You've come to the right group. Feel free to ask questions, some one is bound to know the answer. =-) Take care! rgsmith22 rgsmith22@...> wrote: Hello All, I am new to the group.I have just been diagnosed with Fibromyalgia and looking for knowledge about it. I am a 45 year old male and gulf war vet, from virginia. I hope all is having a great day. Ralph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2002 Report Share Posted May 18, 2002 Welcome to the group Ralph. Hopefully you can find some answers here or even just someone to listen. Koala-t hugs, Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2002 Report Share Posted May 18, 2002 Welcome to the group Ralph. Hopefully you can find some answers here or even just someone to listen. Koala-t hugs, Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Hi Jody, I too will introduce myself and help you with your concerns. I was diagnosed in the summer of 2001 and sceduled for RAI. I cancelled after readying so many horror stories for 3 months of everyone who has gone through RAI. I have not heard one testimony of anyone who is glad they did. So I did nothing for a year, but take my Atenolol to control the palpatations. I felt great until a couple months ago, and started reading the forums on about.com again and found Elaine there. I had gone through accupuncture, and chinese meds tea and other alternative med but the Atenolol was not working. The palpatations are serious and I had to do something. I was sooo relieved to find Elaine and her help has been a God send. She had RAI and wish she had not. You should research with all your heart and avoid RAI with all your might. Give Elaine 's " Graves' Disease A Practical Guide " book to your Endo after you read it, to get educated. RAI has been done for over 50 years and it is time for a better way. 99% of all Doctors (mine encluded) do not know any better, and we have to educate them. I am soooo glad I waited and listened to my better judgement. On 30mg of Tap since Jan.4th. and looking forward to remission. Blessings K > Hi all > I am coming out of lurkdom to introduce myself. > I , what other choices there might be, etc. I > am wondering why I would need RAI if my numbers are looking so good. > If anyone can give me any suggestions they would be greatly > appreciated. > Thanks > Jody2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2003 Report Share Posted January 11, 2003 Hi Jody, I too will introduce myself and help you with your concerns. I was diagnosed in the summer of 2001 and sceduled for RAI. I cancelled after readying so many horror stories for 3 months of everyone who has gone through RAI. I have not heard one testimony of anyone who is glad they did. So I did nothing for a year, but take my Atenolol to control the palpatations. I felt great until a couple months ago, and started reading the forums on about.com again and found Elaine there. I had gone through accupuncture, and chinese meds tea and other alternative med but the Atenolol was not working. The palpatations are serious and I had to do something. I was sooo relieved to find Elaine and her help has been a God send. She had RAI and wish she had not. You should research with all your heart and avoid RAI with all your might. Give Elaine 's " Graves' Disease A Practical Guide " book to your Endo after you read it, to get educated. RAI has been done for over 50 years and it is time for a better way. 99% of all Doctors (mine encluded) do not know any better, and we have to educate them. I am soooo glad I waited and listened to my better judgement. On 30mg of Tap since Jan.4th. and looking forward to remission. Blessings K > Hi all > I am coming out of lurkdom to introduce myself. > I , what other choices there might be, etc. I > am wondering why I would need RAI if my numbers are looking so good. > If anyone can give me any suggestions they would be greatly > appreciated. > Thanks > Jody2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 In a message dated 1/11/2003 6:54:58 PM Eastern Standard Time, ljlund@... writes: > . I > am wondering why I would need RAI if my numbers are looking so good. Welcome, Jody2! (Can we handle 2 Jodys? Just kiddin'!) That's just it...if it ain't broke, don't fix it! You have responded very quickly to the meds! You are on the only treatment for GD that offers the possible outcome of remission. Your doc will tell you that you can only stay on the meds for 2 years, and that is not true. You can stay on them until you reach remission or a lifetime if necessary....but proper dosage and monitoring is important. I personally think RAI is barbaric! God bless, http://hometown.aol.com/lisareynolds64/myhomepage/personal.htmlhttp://ho\ metown.aol.com/lisareynolds64/myhomepage/personal.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 In a message dated 1/11/2003 6:54:58 PM Eastern Standard Time, ljlund@... writes: > . I > am wondering why I would need RAI if my numbers are looking so good. Welcome, Jody2! (Can we handle 2 Jodys? Just kiddin'!) That's just it...if it ain't broke, don't fix it! You have responded very quickly to the meds! You are on the only treatment for GD that offers the possible outcome of remission. Your doc will tell you that you can only stay on the meds for 2 years, and that is not true. You can stay on them until you reach remission or a lifetime if necessary....but proper dosage and monitoring is important. I personally think RAI is barbaric! God bless, http://hometown.aol.com/lisareynolds64/myhomepage/personal.htmlhttp://ho\ metown.aol.com/lisareynolds64/myhomepage/personal.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 Hi Jody, If your numbers are good, there is no reason for you to have RAI. GD is caused by thyroid antibodies that stimulate thyroid cells to produce excess thyroid hormone. When your immune system calms down and stops producing these antibodies, you are in remission. The idea with meds is to take them until you are no longer producing these antibodies. This is easily verified with a blood test. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 Hi Jody, If your numbers are good, there is no reason for you to have RAI. GD is caused by thyroid antibodies that stimulate thyroid cells to produce excess thyroid hormone. When your immune system calms down and stops producing these antibodies, you are in remission. The idea with meds is to take them until you are no longer producing these antibodies. This is easily verified with a blood test. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 Hi Jody 2 Your endo is considering the possibility that even if you do reach remission, you could relapse. They don't have to worry about monitoring us as closely (even if we are in remission) if they ablate the thyroid. I think that risk should be up to the patient, not the doctor. If I had a chance again, I would take that risk. I'd even stay on ATDs indefinitely (as long as I tolerated them well) if I couldn't reach remission. This brings up another problem. Often, the doctors will tell you that you cannot tolerate the ATDs because of a rash (allergy) or because your liver enzymes are rising (liver damage). Both of these aren't necessarily true. Graves', in itself, causes raised liver enzymes so you need to have a baseline before you start ATDs. The rash can also be a part of Graves'. If it is because of the ATDs this can often be remedied by a medication reduction which the doctor often does after the 1st 6 weeks anyways. I had RAI over 15 years ago and will always regret it. Since thyroid hormone is used by every cell in the body, a problem with the replacement can manifest itself in many different ways. They tried to treat all my symptoms separately and it took them 11 years to figure out what was wrong with me because of their insistence that thyroid levels are fine as long as TSH is in the normal range. Many doctors are changing their attitude and are trying to be more proactive about how they treat their post-RAI patients but it still isn't as good as having your own thyroid gland. Graves' is an autoimmune disease in which your immune system views your thyroid gland as foreign and attacks it. Permanently treating the thyroid does nothing to address this. ATDs are temporary and do address it indirectly (they suppress the immune system as they prevent the manufacture of thyroid hormone). Anyhow, RAI isn't the panacea that doctors often make it out to be. Take care, dx & RAI 1987 (at age 24) > I > am wondering why I would need RAI if my numbers are looking so good. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2003 Report Share Posted January 12, 2003 Hi Jody 2 Your endo is considering the possibility that even if you do reach remission, you could relapse. They don't have to worry about monitoring us as closely (even if we are in remission) if they ablate the thyroid. I think that risk should be up to the patient, not the doctor. If I had a chance again, I would take that risk. I'd even stay on ATDs indefinitely (as long as I tolerated them well) if I couldn't reach remission. This brings up another problem. Often, the doctors will tell you that you cannot tolerate the ATDs because of a rash (allergy) or because your liver enzymes are rising (liver damage). Both of these aren't necessarily true. Graves', in itself, causes raised liver enzymes so you need to have a baseline before you start ATDs. The rash can also be a part of Graves'. If it is because of the ATDs this can often be remedied by a medication reduction which the doctor often does after the 1st 6 weeks anyways. I had RAI over 15 years ago and will always regret it. Since thyroid hormone is used by every cell in the body, a problem with the replacement can manifest itself in many different ways. They tried to treat all my symptoms separately and it took them 11 years to figure out what was wrong with me because of their insistence that thyroid levels are fine as long as TSH is in the normal range. Many doctors are changing their attitude and are trying to be more proactive about how they treat their post-RAI patients but it still isn't as good as having your own thyroid gland. Graves' is an autoimmune disease in which your immune system views your thyroid gland as foreign and attacks it. Permanently treating the thyroid does nothing to address this. ATDs are temporary and do address it indirectly (they suppress the immune system as they prevent the manufacture of thyroid hormone). Anyhow, RAI isn't the panacea that doctors often make it out to be. Take care, dx & RAI 1987 (at age 24) > I > am wondering why I would need RAI if my numbers are looking so good. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2003 Report Share Posted April 28, 2003 -----BEGIN PGP SIGNED MESSAGE----- Hash: SHA1 Kim Hammon wrote: > > My > eyes are very swollen and my legs hurt does anyone else have this > problem? They are classic hypothyroid symptoms (too little thyroid hormone), although for the eyes you need to distinguish fluid (such as you might get after a nights sleep, but that doesn't seem to drain away as readily, which can be pure hypothyroid) from other eye problems (which can also induce the same puffiness just to add to the confusion - sorry). T3 and T4 are thyroid hormones, T3 has three Iodine atoms in the molecule, you can guess how many Iodine atoms T4 has. It is important following RAI ablation to measure serum free T4 and serum free T3 (fT4 and fT3), as these are the actual usuable amounts of thyroid hormone in your blood. A common mistake is to measure TSH only, which lags behind the fT4 and fT3 tests, and by the time it has risen, patients may have puffy eyes, painful legs, and possibly also depression and weight gain. Usually it is recommended to wait 6 months or a year from having RAI to getting pregnant, the main reason for this is that RAI is repeated in a substantial proportion of patients, but can't be used if you are pregnant. Secondary reasons include; residual radioactivity (but this is mostly gone withing 6 to 8 weeks after treatment) and getting your hormone levels reasonably stable (which can take from weeks to never depending how lucky you are). -----BEGIN PGP SIGNATURE----- Comment: Using GnuPG with Mozilla - http://enigmail.mozdev.org iD8DBQE+raflGFXfHI9FVgYRAm3PAKDCWjmDuthcOdkEqIr6pKkjGe2rvQCg0U50 G1MHq8aO9fpGJ0eXDRZpfS8= =S5+1 -----END PGP SIGNATURE----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 > Hi I'm Kim and I'm new to this group. . . . I've only known that I've had Graves for about four months and the Dr gave me radioactive treatment I was so afraid and trusted him, I did it because we want another child and I thought that I was doing the right thing. I'll be getting more blood work done in a few days I'll post my results and see if someone can help me understand. My eyes are very swollen and my legs hurt does anyone else have this problem? Thanks Kim > Hi Kim, and welcome, As Simon mentioned, it sounds like you've become hypothyroid and need to start on replacement hormone. Do post your test results. If your TSH reading is much over 2.0 (3.04 is the new top limit), it definitely means you're hypothyroid. Sometimes TSH is slow to rise, though, so as Simon mentioned your doc should also tests Free T4 and Free T3 to make sure they're not low (swollen eyes and leg aches do sound hypo, and this is to be expected after the treatment). You should also find a an eye doctor who treats thyroid eye disease and get a baseline checkup. Many people find that taking flaxseed oil, from the health food store, 2 tablespoons a day in yogurt or cottage cheese, helps with the eye inflammation. You aslo need to use lots of artificial tears to keep your eyes moist. You've found an experienced group and can get lots of support here. Graves' and, later, pregnancy, do best with a relaxed attitude. This would be a good time to start practicing some stress reduction, like deep breathing or yoga. You did your best in choosing your treatment, and doctors overwhelmingly opt for radiation. (One of my endo's partners had Graves' and assured me that this was the treatment I would choose, just as she did.) Do make sure you get bloodwork done ASAP--this is the time to start supplementing. And post your labs results, woith reference ranges, when you get them. Someone here will give advice when you do. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 > Hi I'm Kim and I'm new to this group. . . . I've only known that I've had Graves for about four months and the Dr gave me radioactive treatment I was so afraid and trusted him, I did it because we want another child and I thought that I was doing the right thing. I'll be getting more blood work done in a few days I'll post my results and see if someone can help me understand. My eyes are very swollen and my legs hurt does anyone else have this problem? Thanks Kim > Hi Kim, and welcome, As Simon mentioned, it sounds like you've become hypothyroid and need to start on replacement hormone. Do post your test results. If your TSH reading is much over 2.0 (3.04 is the new top limit), it definitely means you're hypothyroid. Sometimes TSH is slow to rise, though, so as Simon mentioned your doc should also tests Free T4 and Free T3 to make sure they're not low (swollen eyes and leg aches do sound hypo, and this is to be expected after the treatment). You should also find a an eye doctor who treats thyroid eye disease and get a baseline checkup. Many people find that taking flaxseed oil, from the health food store, 2 tablespoons a day in yogurt or cottage cheese, helps with the eye inflammation. You aslo need to use lots of artificial tears to keep your eyes moist. You've found an experienced group and can get lots of support here. Graves' and, later, pregnancy, do best with a relaxed attitude. This would be a good time to start practicing some stress reduction, like deep breathing or yoga. You did your best in choosing your treatment, and doctors overwhelmingly opt for radiation. (One of my endo's partners had Graves' and assured me that this was the treatment I would choose, just as she did.) Do make sure you get bloodwork done ASAP--this is the time to start supplementing. And post your labs results, woith reference ranges, when you get them. Someone here will give advice when you do. Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Hi Kim, I had graves when I was a teenager and it's active again. Very active..ugh. My endo is talking about RAI..and since you have gone through this, I would love to talk with you. Email me at ncmom2girls@... please! Thanks so much and I wish you well soon!! > Hi I'm Kim and I'm new to this group. I'm overwhelmed with all of this info that I've been reading. I don't even know what my T3 and T4 are. I've only known that I've had Graves for about four months and the Dr gave me radioactive treatment I was so afraid and trusted him, I did it because we want another child and I thought that I was doing the right thing. I'll be getting more blood work done in a few days I'll post my results and see if someone can help me understand. My eyes are very swollen and my legs hurt does anyone else have this problem? Thanks Kim > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Hi Kim, I had graves when I was a teenager and it's active again. Very active..ugh. My endo is talking about RAI..and since you have gone through this, I would love to talk with you. Email me at ncmom2girls@... please! Thanks so much and I wish you well soon!! > Hi I'm Kim and I'm new to this group. I'm overwhelmed with all of this info that I've been reading. I don't even know what my T3 and T4 are. I've only known that I've had Graves for about four months and the Dr gave me radioactive treatment I was so afraid and trusted him, I did it because we want another child and I thought that I was doing the right thing. I'll be getting more blood work done in a few days I'll post my results and see if someone can help me understand. My eyes are very swollen and my legs hurt does anyone else have this problem? Thanks Kim > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Hi Kim, Welcome to the group. Some people become hypothyroid fairly quickly after RAI. You'll need to have your FT4 and FT3 levels checked to see if it's time to start thyroid replacement hormone. Both high and low thyroid hormone levels can cause eye symptoms, and some people develop a congestive form of eye disease after RAI. You may want to also check with an ophthalmologist to see if you need treatment for this. Try to start keeping a log of your lab results, noting how you feel when your blood is drawn. This will help in figuring out what dose of replacement hormone works best for you. Take care, elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Hi Kim, Welcome to the group. Some people become hypothyroid fairly quickly after RAI. You'll need to have your FT4 and FT3 levels checked to see if it's time to start thyroid replacement hormone. Both high and low thyroid hormone levels can cause eye symptoms, and some people develop a congestive form of eye disease after RAI. You may want to also check with an ophthalmologist to see if you need treatment for this. Try to start keeping a log of your lab results, noting how you feel when your blood is drawn. This will help in figuring out what dose of replacement hormone works best for you. Take care, elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2003 Report Share Posted August 27, 2003 In a message dated 8/27/2003 4:40:46 AM Eastern Daylight Time, RSS-Support writes: > > Subject: New to group > > Hi Jackie - I believe I remember you from the Preemie-L listserv (I've been very involved in the non-profit end of the group). My son Conor was a 24 weeker born at 1lb 3oz. We suspected he had RSS at the age of three but only just got an official diagnosis now at the age of 7-1/2. We have just started GH therapy last month and so far it is going ok. As for shoes, I know it's hard to get special shoes for special needs. Have you checked with Craft Shoes? They are a specialty shoe retailer. Welcome to the list. , mom to Conor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2003 Report Share Posted August 27, 2003 Hi Jackie, Welcome to the listserve! I can answer one of your questions. Nordstrom will sell you two different size shoes. They have a web site as well if there is not a store near you. www.nordstrom.com Mom to Colin (RSS, g-tube) and Hayden - almost 33 mo. twins Expecting #3 on 1/3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2003 Report Share Posted August 27, 2003 Hi Jackie, Welcome to the listserve! I can answer one of your questions. Nordstrom will sell you two different size shoes. They have a web site as well if there is not a store near you. www.nordstrom.com Mom to Colin (RSS, g-tube) and Hayden - almost 33 mo. twins Expecting #3 on 1/3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 Hi Jackie- Welcome to the group! I don't have any ideas for the shoe problems but hopefully someone else will post. Most of the time someone on the listserve has an answer for you. I respect your decision to not use the growth hormone and don't want you to think that I am trying to persuade you differently. I am interested in your comments about the ght. My son has been on ght for one year but I realize everyone has to make their own decision about it. I am just wondering what side effects you are referring to? One of the main reasons we decided to try ght is that the side effects are very minimal according to the information I have been provided. ALso, my son needed to increase his muscle tone which the ght helps with. Again, welcome to the group. F. > Hello, > > > > I would like to introduce myself. I am Jackie mother to who is 4 > going to be 5 next month.. She was a preemie at 7 months born at only one > pound 10 ounces and 12 inches long. We had a rough ride in the NICU and the > first two years after with multiple infections, mostly lung etc. When she > was around 18 months to two the diagnosis of RSS was made after a visit to > the geneticist and several tests as well as the endocrinologist. She now is > 39 " and 26 pounds. She is very petite but eats like a horse!!!! She has > the asymmetry of her legs but no real leg length discrepancy. She has the > blue sclerae, curved fifth digits. We have to have kidney ultrsounds q6 > months. All in all this is not the worst that could have ever happened, > however, I worry all the time about her being made fun of because of her > short stature, her legs being different sizes around etc. My family tells > me I am the only one who notices because I am looking for it but I don't > know it is pretty obvious. > > > > Her father and I also made the decision not to give her growth hormone > injections as it just didn't make me feel comfortable with all of the side > effects and the benefits did not out weigh the risks for us. I don't know > if I would have come to the same decision if this was a boy child however. > > > > Our problem now is getting shoes, her one foot needs a size 9 one needs a > 9.5. I knew of a website at one time but have since forgotten. Anyone > with info and support please write!!! Also any new treatments out there > that I am unaware of besides the growth hormone . > > > > Thanks for having a support group for this as there is no one else I know > of with this syndrome. > > > > Jackie Aguilar > > Database Administrator > > SwedishAmerican Hospital > > 1401 E. State Street > > Rockford, I L 61104 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 Hi Genell, welcome,I'm new too. I had a lap band on 25th nov 2003 and i'm waiting to for the time when i can try too. I also have pcos. I'm 30yrs of age, I don't have kids yet. Good to hear from you. congraduations with that weight loss. Hope next year brings much joy cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 , Welcome to the group and congrats on weight loss! Good luck on your quest to have a child, the women here have been a great help to me and I'm sure that any question you have one of the wonderful ladies here will be able to give you some guidance. Axelrod New To Group Hi Everyone! My name is , and I had Lap RNY on 7/9/03 -96lbs. I am not currently pregnant, but I am hoping to have kids in the future. I want to do some research first so I will be well prepared. Any info, suggestions, etc is welcome! Thanks! - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Welcome ! You are wise to do research prior to ttc after wls! Welcome to the group and hope we canhelp! Sharon Lap RNY 12-13-01 378/212/160 29 weeks pregnant with 1st child -- It's a boy!! > Hi Everyone! My name is , and I had Lap RNY on 7/9/03 - 96lbs. I am > not currently pregnant, but I am hoping to have kids in the future. I want to > do some research first so I will be well prepared. Any info, suggestions, etc > is welcome! Thanks! > - > > > Quote Link to comment Share on other sites More sharing options...
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