Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 B, Thanks....I had pretty much decided to do that, too. I guess everything is all still so new to me, that I don't really know which way to go first. I'm already so glad to have yall! I was just reading on the site; the letter to the newly-diagnosed .... one section in there is about taking the ATD's, and not doing anything permanent. I found out from the Ear, Nose, Throat doctor that I had Grave's for sure on the 20th, the endocrinologist had me take the RAI on the 23rd. They have already said that it didn't work, and that I would be retaking it sometime within the next 3 months. I think they're going to tell me when on Tuesday; or at least that's when I talk to her again. I feel really confused now.....I really checked around my area, and she is the ONLY endocrinologist anyone would recommend. Geese..... I hope everyone is having a good night, and thanks for the help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 B, Thanks....I had pretty much decided to do that, too. I guess everything is all still so new to me, that I don't really know which way to go first. I'm already so glad to have yall! I was just reading on the site; the letter to the newly-diagnosed .... one section in there is about taking the ATD's, and not doing anything permanent. I found out from the Ear, Nose, Throat doctor that I had Grave's for sure on the 20th, the endocrinologist had me take the RAI on the 23rd. They have already said that it didn't work, and that I would be retaking it sometime within the next 3 months. I think they're going to tell me when on Tuesday; or at least that's when I talk to her again. I feel really confused now.....I really checked around my area, and she is the ONLY endocrinologist anyone would recommend. Geese..... I hope everyone is having a good night, and thanks for the help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Hello.....I understand how you feel.....I feel so guilty. The endo. thinks I have had this for years (I'm 30). So, it might have affected all of them. She told me that it was very hereditary....and that they could carry the antibodies? I pray not....I really don't want to have them tested, they all have a phobia of needles. My cousin works in the lab at the hospital. I had her check, and they would definitely have to take the blood out of their arms. I don't think 30 grown men could hold them down! I know I sound like a chicken. hee,hee,hee.....I don't think it would be a bad idea to know, but I wonder what could they do about it if they have the antibodies, but not sick yet? See, I'm still new at this! I have soooo many questions. When they told me that I had a thyroid problem, I was ignorant enough to be relieved. I thought, " whew " that's easy to fix! Although by that time I thought I was literally loosing my mind, so anything would have sounded good! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Hello.....I understand how you feel.....I feel so guilty. The endo. thinks I have had this for years (I'm 30). So, it might have affected all of them. She told me that it was very hereditary....and that they could carry the antibodies? I pray not....I really don't want to have them tested, they all have a phobia of needles. My cousin works in the lab at the hospital. I had her check, and they would definitely have to take the blood out of their arms. I don't think 30 grown men could hold them down! I know I sound like a chicken. hee,hee,hee.....I don't think it would be a bad idea to know, but I wonder what could they do about it if they have the antibodies, but not sick yet? See, I'm still new at this! I have soooo many questions. When they told me that I had a thyroid problem, I was ignorant enough to be relieved. I thought, " whew " that's easy to fix! Although by that time I thought I was literally loosing my mind, so anything would have sounded good! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Hello.....I understand how you feel.....I feel so guilty. The endo. thinks I have had this for years (I'm 30). So, it might have affected all of them. She told me that it was very hereditary....and that they could carry the antibodies? I pray not....I really don't want to have them tested, they all have a phobia of needles. My cousin works in the lab at the hospital. I had her check, and they would definitely have to take the blood out of their arms. I don't think 30 grown men could hold them down! I know I sound like a chicken. hee,hee,hee.....I don't think it would be a bad idea to know, but I wonder what could they do about it if they have the antibodies, but not sick yet? See, I'm still new at this! I have soooo many questions. When they told me that I had a thyroid problem, I was ignorant enough to be relieved. I thought, " whew " that's easy to fix! Although by that time I thought I was literally loosing my mind, so anything would have sounded good! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Great! I appreciate it! Good luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 I know you're right, I'm just being chicken....I'll make them an appointment and check it all out! : ) Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 I know you're right, I'm just being chicken....I'll make them an appointment and check it all out! : ) Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 I know you're right, I'm just being chicken....I'll make them an appointment and check it all out! : ) Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Hi Again!! Do you worry about passing GD on to your children? I'm thinking bad thoughts like maybe I shouldn't have had children although I didn't know with my first two. I must ask the Dr about what symptoms to look for and if they're the same as adults. You only want to do what is best for your kids. I pray it doesn't come out in them! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Hi Again!! Do you worry about passing GD on to your children? I'm thinking bad thoughts like maybe I shouldn't have had children although I didn't know with my first two. I must ask the Dr about what symptoms to look for and if they're the same as adults. You only want to do what is best for your kids. I pray it doesn't come out in them! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 , I thought what I would do is wait until they needed blood drawn for some other, more pressing, medical reason and then ask to have the thyroid tests run. My pediatrician also felt the test was not necessary (whereas endo encouraged it) at this time, as nobody as any signs of disease. If they did--and as they age and can handle blood test better--then my feelings about this would, and probably will, change. Sorry to hear your Graves got worse once you stopped nursing!! Another reason to remember that what works for one might be bad for another of us. B Graves... > Hi! Wow! I also found out I had Grave's Disease while I was nursing > my 3rd baby. I felt very, well, hormonal. So, I thought that when I > quit nursing I would feel better....except mine got a lot worse. > > Have they talked to you about having your kid's tested for the > antibodies? My endo said that it was very important to go ahead and > get that done, but the pedia. didn't agree? I dread the thought of > making them do that....they are only 7, 3 and 1..... > > Thanks! > > > > > > > > > > > > > > > > > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------------- ------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 I'' let you know what the Endo says tomorrow about testing my kids. I think I would like to know! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 I'' let you know what the Endo says tomorrow about testing my kids. I think I would like to know! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 I hadn't heard of the kids having the antibodies without symptoms before... though I had heard that now they probably have the gene that makes them susceptable to getting graves or another autoimmune disease... and knowing that is good because we can do things to protect them from triggers... like vaccinations are triggers, and processed foods, and plastics and other chemicals that are endoctrine disruptors... see 's post from a couple of days ago about a lecture she attended. And we can teach them how to deal with stress so it doesn't become a factor, stuff like that. Of course that all doesn't make it any easier - we are always going to worry and hope our kids don't have to go through what we do. Pam B. -- Re: Graves... Hello.....I understand how you feel.....I feel so guilty. The endo. thinks I have had this for years (I'm 30). So, it might have affected all of them. She told me that it was very hereditary....and that they could carry the antibodies? I pray not....I really don't want to have them tested, they all have a phobia of needles. My cousin works in the lab at the hospital. I had her check, and they would definitely have to take the blood out of their arms. I don't think 30 grown men could hold them down! I know I sound like a chicken. hee,hee,hee.....I don't think it would be a bad idea to know, but I wonder what could they do about it if they have the antibodies, but not sick yet? See, I'm still new at this! I have soooo many questions. When they told me that I had a thyroid problem, I was ignorant enough to be relieved. I thought, " whew " that's easy to fix! Although by that time I thought I was literally loosing my mind, so anything would have sounded good! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 I hadn't heard of the kids having the antibodies without symptoms before... though I had heard that now they probably have the gene that makes them susceptable to getting graves or another autoimmune disease... and knowing that is good because we can do things to protect them from triggers... like vaccinations are triggers, and processed foods, and plastics and other chemicals that are endoctrine disruptors... see 's post from a couple of days ago about a lecture she attended. And we can teach them how to deal with stress so it doesn't become a factor, stuff like that. Of course that all doesn't make it any easier - we are always going to worry and hope our kids don't have to go through what we do. Pam B. -- Re: Graves... Hello.....I understand how you feel.....I feel so guilty. The endo. thinks I have had this for years (I'm 30). So, it might have affected all of them. She told me that it was very hereditary....and that they could carry the antibodies? I pray not....I really don't want to have them tested, they all have a phobia of needles. My cousin works in the lab at the hospital. I had her check, and they would definitely have to take the blood out of their arms. I don't think 30 grown men could hold them down! I know I sound like a chicken. hee,hee,hee.....I don't think it would be a bad idea to know, but I wonder what could they do about it if they have the antibodies, but not sick yet? See, I'm still new at this! I have soooo many questions. When they told me that I had a thyroid problem, I was ignorant enough to be relieved. I thought, " whew " that's easy to fix! Although by that time I thought I was literally loosing my mind, so anything would have sounded good! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 I hadn't heard of the kids having the antibodies without symptoms before... though I had heard that now they probably have the gene that makes them susceptable to getting graves or another autoimmune disease... and knowing that is good because we can do things to protect them from triggers... like vaccinations are triggers, and processed foods, and plastics and other chemicals that are endoctrine disruptors... see 's post from a couple of days ago about a lecture she attended. And we can teach them how to deal with stress so it doesn't become a factor, stuff like that. Of course that all doesn't make it any easier - we are always going to worry and hope our kids don't have to go through what we do. Pam B. -- Re: Graves... Hello.....I understand how you feel.....I feel so guilty. The endo. thinks I have had this for years (I'm 30). So, it might have affected all of them. She told me that it was very hereditary....and that they could carry the antibodies? I pray not....I really don't want to have them tested, they all have a phobia of needles. My cousin works in the lab at the hospital. I had her check, and they would definitely have to take the blood out of their arms. I don't think 30 grown men could hold them down! I know I sound like a chicken. hee,hee,hee.....I don't think it would be a bad idea to know, but I wonder what could they do about it if they have the antibodies, but not sick yet? See, I'm still new at this! I have soooo many questions. When they told me that I had a thyroid problem, I was ignorant enough to be relieved. I thought, " whew " that's easy to fix! Although by that time I thought I was literally loosing my mind, so anything would have sounded good! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 My 7yr old son has s Disease diagnosed Dec 2001, which is an autoimmune endocrine disorder that affects his adrenal glands. Unfortunately I was diagnosed with Graves after him, and as there are no other members of our family with an autoimmune disorder didn't take any precautions. His Endo suggested that something like a vaccine could have triggered the problem which was laying dormant. My son reacted quite severely to his first three vaccinations when he was a baby. It breaks my heart seeing him so sick, and now he has developed migraine - he has one today in fact. Aldyth Pam B wrote:I hadn't heard of the kids having the antibodies without symptoms before... though I had heard that now they probably have the gene that makes them susceptable to getting graves or another autoimmune disease... and knowing that is good because we can do things to protect them from triggers... like vaccinations are triggers, and processed foods, and plastics and other chemicals that are endoctrine disruptors... see 's post from a couple of days ago about a lecture she attended. And we can teach them how to deal with stress so it doesn't become a factor, stuff like that. Of course that all doesn't make it any easier - we are always going to worry and hope our kids don't have to go through what we do. Pam B. -- Re: Graves... Hello.....I understand how you feel.....I feel so guilty. The endo. thinks I have had this for years (I'm 30). So, it might have affected all of them. She told me that it was very hereditary....and that they could carry the antibodies? I pray not....I really don't want to have them tested, they all have a phobia of needles. My cousin works in the lab at the hospital. I had her check, and they would definitely have to take the blood out of their arms. I don't think 30 grown men could hold them down! I know I sound like a chicken. hee,hee,hee.....I don't think it would be a bad idea to know, but I wonder what could they do about it if they have the antibodies, but not sick yet? See, I'm still new at this! I have soooo many questions. When they told me that I had a thyroid problem, I was ignorant enough to be relieved. I thought, " whew " that's easy to fix! Although by that time I thought I was literally loosing my mind, so anything would have sounded good! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Hi Granigans, If your kids test positive for thyroid antibodies now, it just shows that they have a tendency to develop autoimmune thyroid disease and you already know that. Thyroid antibodies come and go. Like most IgG immunoglobulins they degrade after a few months. Your children could be producing antibodies now but not later on. Or they could be negative now and produce antibodies down the road. So by the time they would be most likely to develop symptoms, their antibody titers could easily be different. Also, most children don't have mature immune systems until they're 2 so it wouldn't pay to have your 1 year old tested. I wouldn't have them tested but I'd keep in mind that they could develop autoimmune thyroid disease in the future. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 Hi , Do some careful research before opting for a 2nd I131 ablation. Your first dose shows its maximum effects in the first 8 weeks after the procedure but continues to work (destroy cells) for much longer. During the first two months or so, your cells release thyroid hormone and thyroid antibodies so symptoms often get worse. Your immune system is also stimulated to produce more antibodies after I131. Having increased symptoms or no improvement in your old symptoms does not mean your ablative procedure didn't work. The procedure can be less effective if your thyroid is unusually thick and dense but it's too soon to tell if this is the case. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 If your doctor said they could carry the antibodies, you might want to consider getting a new endo. 20% of the population have the genes that make us susceptible to autoimmune disease but only 3% of the population develop autoimmune disorders. There are congenital diseases where we pass the genes for a specific disease on to our children, for instance in certain types of muscular dystrophy, but Graves' disease isn't a congenital disease. We can passively transfer antibodies to our offspring during pregnancy but these antibodies are gone within 2-3 months at most. When this happens, our children can have transient passive symptoms just like we do, but they don't acquire disease this way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 I've been thinking of getting my 2 dd's (ages 8 & 11) tested too. I don't care if it comes out of my pocket. > Hi! Wow! I also found out I had Grave's Disease while I was nursing > my 3rd baby. I felt very, well, hormonal. So, I thought that when I > quit nursing I would feel better....except mine got a lot worse. > > Have they talked to you about having your kid's tested for the > antibodies? My endo said that it was very important to go ahead and > get that done, but the pedia. didn't agree? I dread the thought of > making them do that....they are only 7, 3 and 1..... > > Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 I've been thinking of getting my 2 dd's (ages 8 & 11) tested too. I don't care if it comes out of my pocket. > Hi! Wow! I also found out I had Grave's Disease while I was nursing > my 3rd baby. I felt very, well, hormonal. So, I thought that when I > quit nursing I would feel better....except mine got a lot worse. > > Have they talked to you about having your kid's tested for the > antibodies? My endo said that it was very important to go ahead and > get that done, but the pedia. didn't agree? I dread the thought of > making them do that....they are only 7, 3 and 1..... > > Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 I've been thinking of getting my 2 dd's (ages 8 & 11) tested too. I don't care if it comes out of my pocket. > Hi! Wow! I also found out I had Grave's Disease while I was nursing > my 3rd baby. I felt very, well, hormonal. So, I thought that when I > quit nursing I would feel better....except mine got a lot worse. > > Have they talked to you about having your kid's tested for the > antibodies? My endo said that it was very important to go ahead and > get that done, but the pedia. didn't agree? I dread the thought of > making them do that....they are only 7, 3 and 1..... > > Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 A voice of reason here: I have 3 kids, now aged 30, 21 and 18. I have GD, probably have had it for many years before diagnosis in '94, and there were signs I now recognize even when I was a child; I was a terribly skinny kid, jumpy legs (drove everyone nuts that I could never sit still), and besides that, my mother had thyroid cancer--before I was born. None of my kids have shown any overt symptoms that would lead me to suspect they had thyroid problems. Better to take a close look at our symptom list (in the files section) and see if there is a strong indication that the testing is needed. Testing small children because you're overwhelmed with a new diagnosis, panicking and feeling guilty about having the disease yourself, is not a good idea in my mind. I have given our symptom list to each of my now-adult children, cautioned them to pay attention to changes in their health, especially my daughter (the eldest). But when they are young you can observe your children, the symptoms of Graves are pretty obvious! One thing I know from my own childhood with a hypochondriac mother: making kids go through unnecessary medical procedures they don't understand will make them feel " different " than their friends, " defective " in some way, and set up life-long emotional problems. I know. I've been there. Finally, a great many of us live well with our thyroid problems. At 53, I still run a very active business, deal with the physical demands of catering weddings and parties, and enjoy life with my husband (and my kids, when they're home). I have taken ATD's for the last 7 years, along with Chinese herbal medicines, appropriate supplements and healthy food, and in general I feel just fine. So even if your kids eventually exhibit overt symptoms of Graves disease, it's not a death sentence! Best to you, Terry > From: Granigans@... > Reply-To: graves_support > Date: Sun, 8 Sep 2002 23:57:12 EDT > To: graves_support > Subject: Re: Graves... > > Hello.....I understand how you feel.....I feel so guilty. The endo. thinks I > have had this for years (I'm 30). So, it might have affected all of them. > She told me that it was very hereditary....and that they could carry the > antibodies? I pray not....I really don't want to have them tested, they all > have a phobia of needles. My cousin works in the lab at the hospital. I had > her check, and they would definitely have to take the blood out of their > arms. I don't think 30 grown men could hold them down! I know I sound like > a chicken. hee,hee,hee.....I don't think it would be a bad idea to know, but > I wonder what could they do about it if they have the antibodies, but not > sick yet? See, I'm still new at this! I have soooo many questions. When > they told me that I had a thyroid problem, I was ignorant enough to be > relieved. I thought, " whew " that's easy to fix! Although by that time I > thought I was literally loosing my mind, so anything would have sounded good! > > > > > Quote Link to comment Share on other sites More sharing options...
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