Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Well i decided to get off the PTU for now until I can get my baby to wean. As soon as I got off of it I have been fighting the tiredness. I talked to the doctor yesterday and she said it's hard to make a decision but as soon as I finish breastfeeding I need to do the radioactive iodine or surgery. She went on to tell me how sick that i am. It's hard for me to see that even though my levels are really high but the only symptom I have is that I'm tired. and I always think that I am tired because I have MS too. I wish I had the weight loss problem, that would be nice but for some reason Graves disease never did this to me. But I had to make a decision not to risk the baby. And the post about PTU being carcinogenic helped too, but the dr never addressed that yesterday even with me asking her about it. I carry a gene that causes the carriers to have a extremely high risk to cancer, my son had a bone marrow transplant because the gene passed to him from both parents causing a rare blood disorder. I don't want to take the chance of PTU causing me problems with that being that I've already gone through cancer (tumors twice being malignant) and skin cancer. Darla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Well i decided to get off the PTU for now until I can get my baby to wean. As soon as I got off of it I have been fighting the tiredness. I talked to the doctor yesterday and she said it's hard to make a decision but as soon as I finish breastfeeding I need to do the radioactive iodine or surgery. She went on to tell me how sick that i am. It's hard for me to see that even though my levels are really high but the only symptom I have is that I'm tired. and I always think that I am tired because I have MS too. I wish I had the weight loss problem, that would be nice but for some reason Graves disease never did this to me. But I had to make a decision not to risk the baby. And the post about PTU being carcinogenic helped too, but the dr never addressed that yesterday even with me asking her about it. I carry a gene that causes the carriers to have a extremely high risk to cancer, my son had a bone marrow transplant because the gene passed to him from both parents causing a rare blood disorder. I don't want to take the chance of PTU causing me problems with that being that I've already gone through cancer (tumors twice being malignant) and skin cancer. Darla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 , I really wonder about the breastfeeding thing, that after I stop it may resume things to be normal. See I had been on Synthroid for 10 years for hypothyroidism since age 17, went through 2 pregnancies, still low. Then with my 3rd pregnancy I became hyperthyroid. The doctor thought after delivery it would go away but it never did which does make me wonder if breastfeeding isn't keeping the condition hanging on. the endocrinologist has jumped around many ideas about the graves disease, one too that makes me wonder is she believes that maybe just one nodule is putting too much out causing the graves but she's unsure, the ultrasound just showed changes in size but didn't show the nodule thing. she said the only way to see for sure is the R. I. test but can't do that till I get my daughter totally weaned. Strange isn't it....but that's always be when it comes to my health LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 , I really wonder about the breastfeeding thing, that after I stop it may resume things to be normal. See I had been on Synthroid for 10 years for hypothyroidism since age 17, went through 2 pregnancies, still low. Then with my 3rd pregnancy I became hyperthyroid. The doctor thought after delivery it would go away but it never did which does make me wonder if breastfeeding isn't keeping the condition hanging on. the endocrinologist has jumped around many ideas about the graves disease, one too that makes me wonder is she believes that maybe just one nodule is putting too much out causing the graves but she's unsure, the ultrasound just showed changes in size but didn't show the nodule thing. she said the only way to see for sure is the R. I. test but can't do that till I get my daughter totally weaned. Strange isn't it....but that's always be when it comes to my health LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 By the way I see your e-mail says U of MN, are you located in Minneapolis or affiliated with Fairview U of MN hospital? My son had his bone marrow transplant there which is why I was curious and we lived for 6 months at the Mc House before and after transplant and post transplant 110 days. Darla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 By the way I see your e-mail says U of MN, are you located in Minneapolis or affiliated with Fairview U of MN hospital? My son had his bone marrow transplant there which is why I was curious and we lived for 6 months at the Mc House before and after transplant and post transplant 110 days. Darla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Unfortuanetely, the transplant had too many complications but he has a rare disorder too, I'm sure you've been seeing alot in recent months about fanconi anemia due to the Nash family that was there in MN from Colorado for their daughter's cord blood transplant from her infant brother. Its been on the national news as well as Oprah and soon on 20/20 Darla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Unfortuanetely, the transplant had too many complications but he has a rare disorder too, I'm sure you've been seeing alot in recent months about fanconi anemia due to the Nash family that was there in MN from Colorado for their daughter's cord blood transplant from her infant brother. Its been on the national news as well as Oprah and soon on 20/20 Darla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi Darla- I wonder why she's pushing RAI since it increases your chances of getting thyroid cancer. It sounds like you're already at risk. If you do choose surgery, make sure the surgeon that does the operation is an experienced thyroid surgeon (at least 10+ thyroidectomies/yr). A subtotal thyroidectomy (if possible) is better than a total thyroidectomy because you'd at least have some thyroid function of your own left. I was 24 when I had RAI (I'm now 38) and have no thyroid function left at all and have had nothing but problems. You do have to take into consideration that your other problems may cause or enhance risks I'm not aware of. I hope your doctor will be forthcoming about what those risks are. You need to discuss your options with all your doctors (neurologist, gastroenterologist,oncologist, endocrinologist-and whoever else is involved in the management of your differing problems) before you make any decisions. All the options available to you have risks and benefits. None of them are perfect choices regardless of how RAI is pushed in the U.S. Who knows. Maybe you'll go into remission after you stop breastfeeding like did. I know that my TSH dropped to 0.46 when I was breastfeeding my son when it had never dropped below 2.5 before that (it went back up to 2.5 after I stopped breastfeeding too). Take care, Utecht Re: need help > Well i decided to get off the PTU for now until I can get my baby to wean. As > soon as I got off of it I have been fighting the tiredness. I talked to the > doctor yesterday and she said it's hard to make a decision but as soon as I > finish breastfeeding I need to do the radioactive iodine or surgery. She went > on to tell me how sick that i am. It's hard for me to see that even though my > levels are really high but the only symptom I have is that I'm tired. and I > always think that I am tired because I have MS too. I wish I had the weight > loss problem, that would be nice but for some reason Graves disease never did > this to me. But I had to make a decision not to risk the baby. And the post > about PTU being carcinogenic helped too, but the dr never addressed that > yesterday even with me asking her about it. I carry a gene that causes the > carriers to have a extremely high risk to cancer, my son had a bone marrow > transplant because the gene passed to him from both parents causing a rare > blood disorder. I don't want to take the chance of PTU causing me problems > with that being that I've already gone through cancer (tumors twice being > malignant) and skin cancer. > > Darla > > ------------------------------------- > 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. > ---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi Darla, Please give yourself a month or so to see what hapens when you wean your baby. Within a month of weaning my thyroid levels changed dramatically and I was in complete remission within three months. So after weaning, just check those levels before you make a permanent decision!! Re: need help > Well i decided to get off the PTU for now until I can get my baby to wean. As > soon as I got off of it I have been fighting the tiredness. I talked to the > doctor yesterday and she said it's hard to make a decision but as soon as I > finish breastfeeding I need to do the radioactive iodine or surgery. She went > on to tell me how sick that i am. It's hard for me to see that even though my > levels are really high but the only symptom I have is that I'm tired. and I > always think that I am tired because I have MS too. I wish I had the weight > loss problem, that would be nice but for some reason Graves disease never did > this to me. But I had to make a decision not to risk the baby. And the post > about PTU being carcinogenic helped too, but the dr never addressed that > yesterday even with me asking her about it. I carry a gene that causes the > carriers to have a extremely high risk to cancer, my son had a bone marrow > transplant because the gene passed to him from both parents causing a rare > blood disorder. I don't want to take the chance of PTU causing me problems > with that being that I've already gone through cancer (tumors twice being > malignant) and skin cancer. > > Darla > > ------------------------------------- > 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. > ---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Darla, Yes, I'm near Mpls and did my graduate work at the U of MN, which is why I still have the email address - cheap service for alumni! I hope the bone marrow transplant was entirely successful! Your family certainly has been through a lot. B Re: need help > By the way I see your e-mail says U of MN, are you located in > Minneapolis or affiliated with Fairview U of MN hospital? My son had his bone > marrow transplant there which is why I was curious and we lived for 6 months > at the Mc House before and after transplant and post transplant > 110 days. > > Darla > > ------------------------------------- > 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. > ---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi Darla, Many people have done well with partial thyroidectomies, so if you're having trouble managing your GD, this might be something you want to seriously look into. With the increased rate of thyroid and small bowel cancer associated with RAI, surgery does sound more promising. How high are your thyroid levels? Your exhaustion could be the after-effects of childbirth. I mention this because I remember feeling exhausted for a long time after having my children. I remember being concerned about this and this was years before my GD diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi Darla, Many people have done well with partial thyroidectomies, so if you're having trouble managing your GD, this might be something you want to seriously look into. With the increased rate of thyroid and small bowel cancer associated with RAI, surgery does sound more promising. How high are your thyroid levels? Your exhaustion could be the after-effects of childbirth. I mention this because I remember feeling exhausted for a long time after having my children. I remember being concerned about this and this was years before my GD diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Darla, also, after hearing your story, I have to wonder if yours isn't a transient postpartum thyroiditis. Please don't rush into anything until you've done more research. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Darla, also, after hearing your story, I have to wonder if yours isn't a transient postpartum thyroiditis. Please don't rush into anything until you've done more research. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi Darla- Now I'm really thinking it wouldn't be a bad idea for you to hold off anything permanent if you can. If you were hypothyroid before, you probably had Hashimoto's antibodies (and probably still have them). You can have both Graves' and Hashimoto's at the same time (like ) and whichever predominates determines whether you're hypothyroid or hyperthyroid at the time. It will be good to find out what the problem really is too. The uptake test (not the same as RAI to ablate your thyroid) will tell the endo whether it's a hot nodule or not. Our pharmacist has a hot nodule. He goes to the same endo as I do and my endo isn't considering RAI for him. Right now the endo is monitoring him. Take care, Re: need help > , > I really wonder about the breastfeeding thing, that after I stop it may > resume things to be normal. See I had been on Synthroid for 10 years for > hypothyroidism since age 17, went through 2 pregnancies, still low. Then with > my 3rd pregnancy I became hyperthyroid. The doctor thought after delivery it > would go away but it never did which does make me wonder if breastfeeding > isn't keeping the condition hanging on. the endocrinologist has jumped around > many ideas about the graves disease, one too that makes me wonder is she > believes that maybe just one nodule is putting too much out causing the > graves but she's unsure, the ultrasound just showed changes in size but > didn't show the nodule thing. she said the only way to see for sure is the R. > I. test but can't do that till I get my daughter totally weaned. Strange > isn't it....but that's always be when it comes to my health LOL > > ------------------------------------- > 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. > ---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Hi Darla- Now I'm really thinking it wouldn't be a bad idea for you to hold off anything permanent if you can. If you were hypothyroid before, you probably had Hashimoto's antibodies (and probably still have them). You can have both Graves' and Hashimoto's at the same time (like ) and whichever predominates determines whether you're hypothyroid or hyperthyroid at the time. It will be good to find out what the problem really is too. The uptake test (not the same as RAI to ablate your thyroid) will tell the endo whether it's a hot nodule or not. Our pharmacist has a hot nodule. He goes to the same endo as I do and my endo isn't considering RAI for him. Right now the endo is monitoring him. Take care, Re: need help > , > I really wonder about the breastfeeding thing, that after I stop it may > resume things to be normal. See I had been on Synthroid for 10 years for > hypothyroidism since age 17, went through 2 pregnancies, still low. Then with > my 3rd pregnancy I became hyperthyroid. The doctor thought after delivery it > would go away but it never did which does make me wonder if breastfeeding > isn't keeping the condition hanging on. the endocrinologist has jumped around > many ideas about the graves disease, one too that makes me wonder is she > believes that maybe just one nodule is putting too much out causing the > graves but she's unsure, the ultrasound just showed changes in size but > didn't show the nodule thing. she said the only way to see for sure is the R. > I. test but can't do that till I get my daughter totally weaned. Strange > isn't it....but that's always be when it comes to my health LOL > > ------------------------------------- > 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. > ---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2001 Report Share Posted January 21, 2001 I was surprised to see someone else gain weight while being hyper, anyone else Darla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2001 Report Share Posted January 21, 2001 Dear Darla There can be many reason why you are tired - with a small baby, other children (?), GD, MS and the other health problems you mention. There has been much on you plate lately. I'm another GD suffer who put on weight during hyper (lots of it). I have actually lost some in last 2 months - since a near total thyroidectomy in Oct 2000. I wish you all the best. Take care of yourself and your family. I hope all works out OK for you. But as the other have said - give yourself time especially after you have weaned your baby before making a permenant decision. Cheers Caroline Dlinden73@... wrote: > Well i decided to get off the PTU for now until I can get my baby to wean. As > soon as I got off of it I have been fighting the tiredness. I talked to the > doctor yesterday and she said it's hard to make a decision but as soon as I > finish breastfeeding I need to do the radioactive iodine or surgery. She went > on to tell me how sick that i am. It's hard for me to see that even though my > levels are really high but the only symptom I have is that I'm tired. and I > always think that I am tired because I have MS too. I wish I had the weight > loss problem, that would be nice but for some reason Graves disease never did > this to me. But I had to make a decision not to risk the baby. And the post > about PTU being carcinogenic helped too, but the dr never addressed that > yesterday even with me asking her about it. I carry a gene that causes the > carriers to have a extremely high risk to cancer, my son had a bone marrow > transplant because the gene passed to him from both parents causing a rare > blood disorder. I don't want to take the chance of PTU causing me problems > with that being that I've already gone through cancer (tumors twice being > malignant) and skin cancer. > > Darla > > ------------------------------------- > 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. > ---------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2001 Report Share Posted January 21, 2001 Many people gain weight while hyper. I gained 35+ pounds. At 12:06 AM 01/22/2001 EST, you wrote: >I was surprised to see someone else gain weight while being hyper, anyone else > >Darla > >------------------------------------- >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. >---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2001 Report Share Posted January 21, 2001 When you're always ravenously hungry, it's hard to lose. Yes, I gained. Terry > From: Dlinden73@... > Reply-To: graves_supportegroups > Date: Mon, 22 Jan 2001 00:06:49 EST > To: graves_supportegroups > Subject: Re: need help > > I was surprised to see someone else gain weight while being hyper, anyone else > > Darla > > ------------------------------------- > 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. > ---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2001 Report Share Posted January 22, 2001 Hi Darla I my reading when I was first diagnosed I found out that approximately 30% on GD suffers in Hyperthyroid phase put on weight. I was certainly in that 30% - I was always starving. Cheers Caroline Dlinden73@... wrote: > I was surprised to see someone else gain weight while being hyper, anyone else > > Darla > > ------------------------------------- > 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. > ---------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2001 Report Share Posted January 22, 2001 Hi all, My first post here. My son has gained 37 pounds since Sept 2000 and is still hyperthyroid. So yes people can gain weight. I have to say he looks really good because prior to being diagnosed he look awful and was tremendously underweight. Suzie Re: need help > I was surprised to see someone else gain weight while being hyper, anyone else > > Darla > > ------------------------------------- > 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. > ---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2001 Report Share Posted January 22, 2001 Hi all, My first post here. My son has gained 37 pounds since Sept 2000 and is still hyperthyroid. So yes people can gain weight. I have to say he looks really good because prior to being diagnosed he look awful and was tremendously underweight. Suzie Re: need help > I was surprised to see someone else gain weight while being hyper, anyone else > > Darla > > ------------------------------------- > 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. > ---------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2001 Report Share Posted January 22, 2001 i'm steadily loosing .5 a day. When I got on tap I gained about 15 lbs in a month, but then I stayed pretty steady. I had to exersize and reduce what I ate. It was hard going from eating EVERYTHING to eating hardly anything. And boy do I love to eat!!!! Amy > >Reply-To: graves_supportegroups >To: <graves_supportegroups> >Subject: Re: need help >Date: Mon, 22 Jan 2001 09:50:17 -0800 > >Darla, > >When my hyper was real hyper, I had diarrhea so bad I lost 17 lbs. in less >than a week. Then the weight gain came, even when I was on TAP and PTU. >I've been off the PTU since July. At first I started losing it, watching >my >diet. Then it became harder. I've joined a diet group ediets. I really >like it. The weight has been coming off slow, but it's coming, since >joining in Nov. I've lost 14 lbs. > >I've noticed that the sodium has a real effect on my weight, even very >little. Since I've always been cautious of the sodium, I choose the low >sodium diet and if I have soup or something like a little salt on popcorn I >notice swelling in my legs and hands. Has anyone else noticed this? > >Debbie R. > > > > > Reply-To: graves_supportegroups > > Date: Mon, 22 Jan 2001 22:09:59 +1100 > > To: graves_supportegroups > > Subject: Re: need help > > > > Hi Darla > > > > I my reading when I was first diagnosed I found out that approximately >30% on > > GD suffers in Hyperthyroid phase put > > on weight. I was certainly in that 30% - I was always starving. > > > > Cheers > > Caroline > > > > Dlinden73@... wrote: > > > >> I was surprised to see someone else gain weight while being hyper, >anyone > >> else > >> > >> Darla > >> > >> ------------------------------------- > >> 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. > >> ---------------------------------------- > > > > > > ------------------------------------- > > 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. > > ---------------------------------------- > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
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