Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 Hi! I'd been diagnosed with Graves Disease for almost two years when I finally decided to have RAI. I was severely allergic to the anti-thyroid medicines (PTU and Tapazole) and my doctor was mostly concerned about my ever increasing heart rate. However, I was experiencing the wonderful side effect of weight loss and wanted to wait until I was down to my ideal weight. (I mean afterall, hasn't he been pressuring me to lose weight all this time?). With all the questions I asked beforehand (not to mention the books and research I'd read) regarding RAI, I never expected thyroid storm. Nor did I read anything about severe nose bleeds with clots. The ER doctor brushed it off blaming the nose bleed on the dry weather and possible sinus congestion. I do not have sinus problems this time of year. Twice my nose started bleeding with no warning and went for 20-30 minutes straight. Both times were clots and more clots. When I was finally able to blow out the last huge clot, my nose stopped bleeding as quick as it started. The only other similarity is that each time, the nose bleeds were preceeded by a dull pain in the core of my brain. I remember feeling weak the second time and had to sit down. Has anyone ever experienced this from RAI? This happened one week after the treatment and has only happened that one day. I'm upset with the extreme mood swings, extreme body temperature changes and pains and sometimes wonder if I'm going crazy. My doctor just ordered new labs (which were drawn this past Tuesday--today is Thursday), so I will soon hear what my levels are. Before I had a really low TSH (.004) and the t3 and t4 were also out of balance. Although my heart rate is high, my cholesterol is wonderful (152) and my blood pressure remains " normal " --probably due to the beta blocker he has me on. My throat is swollen and tender and all my hyperthyroid symptoms have been exacerbated by the RAI. Is this normal? Will it end? Any help or suggestions ya'll can give me would be greatly appreciated. I look forward to visiting this group again. Thank you. Dot Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2007 Report Share Posted January 26, 2007 Hi Dot. Storm sucks. No doubt about it. First.. you're not nuts, and you're not going to be nuts... though you probably feel like a loopy bat. It's a really off center feeling to be coming out of storm.... it's rough on mind and body. Try to keep in mind that what you are feeling is normal for what you are going through and that it will pass. Hard to keep in mind.. but it will pass. I don't remember anyone ever saying that they got nose bleeds after RAI... my 'treat' was to come down with flu like symptoms, I thought I had the flu, it was years later that I found out that it was more likely a form of radiation poisoning, that they'd given me too much... The surge of hormone after RAI or thyroidectomy varies from person to person, It runs the gamut from unnoticeable to a storm/surge. It's usually short lived... What happens during RAI.. as the radioactive iodine is filtered out by the thyroid gland and the tissues begins to die it contracts/shrinks which can cause excess hormone to surge into the blood stream creating a thyroid storm. How severe it is and how long it lasts depends on how much hormone was still in the thyroid tissue and it gets squeeze out all at once or is pressed out over several days. How long it lasts from that point will depend on how saturated the rest of your body is with hormone. If they were giving you antithyroid drugs that might have controlled that part... if they had to stop giving them to you it might take a while for your body to use it all up. It took my body a full six months to purge ALL the hormone out of my system. My endo wanted to allow me to totally bottom out- extreme hypo, to see if the gland would kick in at all, a way to determine if there was ANY gland function left. For me there was none. Whether or not any functional gland tissue remains depends on how high a dose of the radioactive iodine they give you as well as how efficiently your gland filters it out of your blood. A LOT of variables. Hopefully your doc will have you coming in frequently, every couple of weeks, to see what your levels are, there, ideally, should be a steady drop once the surge has passed... Going hypo after being hyper for an extended period of time, or after storm, isn't a heck of a lot of fun, but it's better than being in storm, at least it was for me. I don't know how much being hyper affecting your eating habits, but if I had it to over again I'd try to get on top of eating a lot sooner than I did. The drop in metabolic rate hits quickly and the amount of food that you are accustomed to eating will likely cause you to gain weight. It's very very important not to under eat, we need to eat regularly to protect our adrenals, keep our metabolic rate from going into starvation mode (and gaining MORE weight) and to help reduce the onset of some of the hypo symptoms. With the nose bleeds.. it might not be a bad idea to keep a close eye on your ferritin and iron levels... How long ago did they nuke (RAI) you? Have they started you on replacement hormone yet? Which one? How much? How long ago? What goal has the doc set for your lab results, has he/she said anything about suppressed TSH.... anything along that line? How are you feeling otherwise? I'm about 16 years post RAI... Topper () www.thyrophoenix.com www.toppers-place.com On Fri, 26 Jan 2007 03:34:40 -0000 " dorothyleftoz " dorothyleftoz@...> writes: > Hi! > I'd been diagnosed with Graves Disease for almost two years when I > finally decided to have > RAI. I was severely allergic to the anti-thyroid medicines (PTU and > Tapazole) and my > doctor was mostly concerned about my ever increasing heart rate. > However, I was > experiencing the wonderful side effect of weight loss and wanted to > wait until I was down > to my ideal weight. (I mean afterall, hasn't he been pressuring me > to lose weight all this > time?). > > With all the questions I asked beforehand (not to mention the books > and research I'd read) > regarding RAI, I never expected thyroid storm. Nor did I read > anything about severe nose > bleeds with clots. The ER doctor brushed it off blaming the nose > bleed on the dry weather > and possible sinus congestion. I do not have sinus problems this > time of year. Twice my > nose started bleeding with no warning and went for 20-30 minutes > straight. Both times > were clots and more clots. When I was finally able to blow out the > last huge clot, my nose > stopped bleeding as quick as it started. The only other similarity > is that each time, the > nose bleeds were preceeded by a dull pain in the core of my brain. > I remember feeling > weak the second time and had to sit down. > > Has anyone ever experienced this from RAI? This happened one week > after the treatment > and has only happened that one day. I'm upset with the extreme mood > swings, extreme > body temperature changes and pains and sometimes wonder if I'm going > crazy. My doctor > just ordered new labs (which were drawn this past Tuesday--today is > Thursday), so I will > soon hear what my levels are. Before I had a really low TSH (.004) > and the t3 and t4 were > also out of balance. Although my heart rate is high, my cholesterol > is wonderful (152) and > my blood pressure remains " normal " --probably due to the beta blocker > he has me on. > > My throat is swollen and tender and all my hyperthyroid symptoms > have been exacerbated > by the RAI. Is this normal? Will it end? > > Any help or suggestions ya'll can give me would be greatly > appreciated. I look forward to > visiting this group again. > > Thank you. > Dot Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2007 Report Share Posted January 29, 2007 > > On Fri, 26 Jan 2007 03:34:40 -0000 " dorothyleftoz " > writes: > > > My throat is swollen and tender and all my hyperthyroid symptoms > > have been exacerbated > > by the RAI. Is this normal? Will it end? > > > > Any help or suggestions ya'll can give me would be greatly > > appreciated. I look forward to > > visiting this group again. > > > > Thank you. > > Dot > Yes, it will end. After RAI in 2004, I had the hyper symptoms as the thyroid was dying. My eyes became worse for awhile. It will end though in time. Beta blockers work wonders for hyper episodes. Take care. Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2007 Report Share Posted January 29, 2007 > > On Fri, 26 Jan 2007 03:34:40 -0000 " dorothyleftoz " > writes: > > > My throat is swollen and tender and all my hyperthyroid symptoms > > have been exacerbated > > by the RAI. Is this normal? Will it end? > > > > Any help or suggestions ya'll can give me would be greatly > > appreciated. I look forward to > > visiting this group again. > > > > Thank you. > > Dot > Yes, it will end. After RAI in 2004, I had the hyper symptoms as the thyroid was dying. My eyes became worse for awhile. It will end though in time. Beta blockers work wonders for hyper episodes. Take care. Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Hi , Thanks so much for your reply. I had RAI Jan 10. I have been watching my diet and eating less, but I have gained 15 pounds since then. I'm so depressed over that because I was actually losing weight being hyper. I wanted my doctor to wait until I got down to my ideal weight, but because of my heart racing, he was concerned. The extreme mood swings hit me without a moment's notice and I'm tired all the time. I did not want to be hypo. My doctor tried the anti-thyroid meds (Tapazole and PTU) last year, (NOV 2005), but I was highly allergic to both of them and ended up in the ER four times. The good thing about those was that they worked. I felt so good just being on those for that short of a time. I go in next week for labs. Luckily, I haven't had any more nose bleeds. It was really scary. I still get the headaches, though. I've been blessed my whole life with not having to suffer headaches, and now, I get one every day. My thyroid gland was swollen last week and I wore turtle neck sweaters every day. Thank goodness the weather finally dropped down here. (We were in the 30s). I'm glad you mentioned the " flu-like " symptoms, because that is the way I feel. I need to keep a symptom journal because I can't remember things and this way I'll have something to show my doctor. Thanks again, for responding. My mom, dad and two sisters are all HYPOthyroid and I end up being HYPER. The only thing is, is that we are backwards: They are skinny being HYPO and I'm fat being HYPER. Maybe I'll lose the weight when they start me on synthroid. Dot. --- topper2@... wrote: > Hi Dot. > > Storm sucks. No doubt about it. > > First.. you're not nuts, and you're not going to be > nuts... though you > probably feel like a loopy bat. It's a really off > center feeling to be > coming out of storm.... it's rough on mind and body. > Try to keep in mind > that what you are feeling is normal for what you are > going through and > that it will pass. Hard to keep in mind.. but it > will pass. > > I don't remember anyone ever saying that they got > nose bleeds after > RAI... my 'treat' was to come down with flu like > symptoms, I thought I > had the flu, it was years later that I found out > that it was more likely > a form of radiation poisoning, that they'd given me > too much... > > The surge of hormone after RAI or thyroidectomy > varies from person to > person, It runs the gamut from unnoticeable to a > storm/surge. > > It's usually short lived... What happens during > RAI.. as the radioactive > iodine is filtered out by the thyroid gland and the > tissues begins to die > it contracts/shrinks which can cause excess hormone > to surge into the > blood stream creating a thyroid storm. How severe it > is and how long it > lasts depends on how much hormone was still in the > thyroid tissue and it > gets squeeze out all at once or is pressed out over > several days. > > How long it lasts from that point will depend on how > saturated the rest > of your body is with hormone. If they were giving > you antithyroid drugs > that might have controlled that part... if they had > to stop giving them > to you it might take a while for your body to use it > all up. > > It took my body a full six months to purge ALL the > hormone out of my > system. My endo wanted to allow me to totally bottom > out- extreme hypo, > to see if the gland would kick in at all, a way to > determine if there was > ANY gland function left. For me there was none. > > Whether or not any functional gland tissue remains > depends on how high a > dose of the radioactive iodine they give you as well > as how efficiently > your gland filters it out of your blood. A LOT of > variables. > > Hopefully your doc will have you coming in > frequently, every couple of > weeks, to see what your levels are, there, ideally, > should be a steady > drop once the surge has passed... > > Going hypo after being hyper for an extended period > of time, or after > storm, isn't a heck of a lot of fun, but it's better > than being in storm, > at least it was for me. > > I don't know how much being hyper affecting your > eating habits, but if I > had it to over again I'd try to get on top of eating > a lot sooner than I > did. The drop in metabolic rate hits quickly and the > amount of food that > you are accustomed to eating will likely cause you > to gain weight. > > It's very very important not to under eat, we need > to eat regularly to > protect our adrenals, keep our metabolic rate from > going into starvation > mode (and gaining MORE weight) and to help reduce > the onset of some of > the hypo symptoms. > > With the nose bleeds.. it might not be a bad idea to > keep a close eye on > your ferritin and iron levels... > > How long ago did they nuke (RAI) you? > Have they started you on replacement hormone yet? > Which one? How much? > How long ago? > > What goal has the doc set for your lab results, has > he/she said anything > about suppressed TSH.... anything along that line? > > How are you feeling otherwise? > > I'm about 16 years post RAI... > > Topper () > www.thyrophoenix.com > www.toppers-place.com > > On Fri, 26 Jan 2007 03:34:40 -0000 " dorothyleftoz " > dorothyleftoz@...> writes: > > Hi! > > I'd been diagnosed with Graves Disease for almost > two years when I > > finally decided to have > > RAI. I was severely allergic to the anti-thyroid > medicines (PTU and > > Tapazole) and my > > doctor was mostly concerned about my ever > increasing heart rate. > > However, I was > > experiencing the wonderful side effect of weight > loss and wanted to > > wait until I was down > > to my ideal weight. (I mean afterall, hasn't he > been pressuring me > > to lose weight all this > > time?). > > > > With all the questions I asked beforehand (not to > mention the books > > and research I'd read) > > regarding RAI, I never expected thyroid storm. > Nor did I read > > anything about severe nose > > bleeds with clots. The ER doctor brushed it off > blaming the nose > > bleed on the dry weather > > and possible sinus congestion. I do not have > sinus problems this > > time of year. Twice my > > nose started bleeding with no warning and went for > 20-30 minutes > > straight. Both times > > were clots and more clots. When I was finally > able to blow out the > > last huge clot, my nose > > stopped bleeding as quick as it started. The only > other similarity > > is that each time, the > > nose bleeds were preceeded by a dull pain in the > core of my brain. > > I remember feeling > > weak the second time and had to sit down. > > > > Has anyone ever experienced this from RAI? This > happened one week > > after the treatment > > and has only happened that one day. I'm upset > with the extreme mood > > swings, extreme > > body temperature changes and pains and sometimes > wonder if I'm going > > crazy. My doctor > > just ordered new labs (which were drawn this past > Tuesday--today is > > Thursday), so I will > > soon hear what my levels are. Before I had a > really low TSH (.004) > > and the t3 and t4 were > > also out of balance. Although my heart rate is > high, my cholesterol > > is wonderful (152) and > > my blood pressure remains " normal " --probably due > to the beta blocker > > he has me on. > > > > My throat is swollen and tender and all my > hyperthyroid symptoms > > have been exacerbated > > by the RAI. Is this normal? Will it end? > > > > Any help or suggestions ya'll can give me would be > greatly > > appreciated. I look forward to > > visiting this group again. > > > > Thank you. > > Dot > ________________________________________________________________________________\ ____ Want to start your own business? Learn how on Yahoo! Small Business. http://smallbusiness.yahoo.com/r-index Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Have the docs told you what is causing your family's glands to be wonky? It is odd, how it can affect us each so differently.. I think that is why it's so great that we now have a way to connect with others and compare notes, so that we can see that we aren't nuts.. that others do feel the same weird way. The weight is a challenge. Just keep in mind to not skip meals, it will affect how your body is able to process the hormones, we'll get into that stuff more as you get deeper into this stuff... for now try to keep your meals balanced and to reduce portions, not skip meals altogether... Avoiding goitrogens is important too. Once you get the hormone replacement started and things settle down more then you can work on getting the healthy ones back into your diet and adjusting meds accordingly. Hang in there, it's still a running challenge for you but you're past the worse part... and as bad as hypo is.. it doesn't kill you where you're standing like severe hyper or thyroid storm can. Topper () On Wed, 31 Jan 2007 09:18:57 -0800 (PST) Dorothy dorothyleftoz@...> writes: > Hi , > > Thanks so much for your reply. I had RAI Jan 10. I > have been watching my diet and eating less, but I have > gained 15 pounds since then. I'm so depressed over > that because I was actually losing weight being hyper. > I wanted my doctor to wait until I got down to my > ideal weight, but because of my heart racing, he was > concerned. > > The extreme mood swings hit me without a moment's > notice and I'm tired all the time. I did not want to > be hypo. My doctor tried the anti-thyroid meds > (Tapazole and PTU) last year, (NOV 2005), but I was > highly allergic to both of them and ended up in the ER > four times. The good thing about those was that they > worked. I felt so good just being on those for that > short of a time. > > I go in next week for labs. Luckily, I haven't had > any more nose bleeds. It was really scary. I still > get the headaches, though. I've been blessed my whole > life with not having to suffer headaches, and now, I > get one every day. > > My thyroid gland was swollen last week and I wore > turtle neck sweaters every day. Thank goodness the > weather finally dropped down here. (We were in the > 30s). I'm glad you mentioned the " flu-like " symptoms, > because that is the way I feel. I need to keep a > symptom journal because I can't remember things and > this way I'll have something to show my doctor. > > Thanks again, for responding. My mom, dad and > two sisters are all HYPOthyroid and I end up being > HYPER. The only thing is, is that we are backwards: > They are skinny being HYPO and I'm fat being HYPER. > Maybe I'll lose the weight when they start me on > synthroid. > > Dot. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Coincidence? I spoke to a gal I grew up across the street from, guess what? She has Hashimotos. We went to the same schools, lived in the same neighborhood.... probably shopped at the same grocery.... It makes me wonder, how many other kids did I grow up with that ended up with a thyroid problem that we just lost touch of?We grew up in CHicago, so can you say FLUORIDE in the water? jackieHave the docs told you what is causing your family's glands to be wonky?It is odd, how it can affect us each so differently.. I think that is whyit's so great that we now have a way to connect with others and comparenotes, so that we can see that we aren't nuts.. that others do feel thesame weird way.Topper () Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Is there a connection between flouride water and thyroid ailments? My sisters and I did grow up drinking floridated water, but my husband did not. Since we currently live in the county and have well water, we do not have flouride in the water. (My kids do have more cavities than I ever did). Has there been research on this? It's very interesting. I did not want RAI, but my doctor insisted due to my racing heart. (He kept increasing the beta-blocker dosage and I couldn't hardly walk up stairs without getting winded). Why did I become HYPER (with Graves) when my sisters and parents are HYPO? I did have gestational diabetes (all three pregnancies) so that might have something to do with it. I appreciate your comments. I will check back often because these after effects of RAI are frustrating since no doctor will confirm my symptoms are a result of RAI. Thank you, all. Dot --- Ken & Jackie Reimer quest4us@...> wrote: > Coincidence? I spoke to a gal I grew up across the > street from, > guess what? She has Hashimotos. We went to the same > schools, lived > in the same neighborhood.... probably shopped at the > same > grocery.... It makes me wonder, how many other kids > did I grow up > with that ended up with a thyroid problem that we > just lost touch of? > > We grew up in CHicago, so can you say FLUORIDE in > the water? > > > jackie > > > > > > > > > Have the docs told you what is causing your > family's glands to be > > wonky? > > > > It is odd, how it can affect us each so > differently.. I think that > > is why > > it's so great that we now have a way to connect > with others and > > compare > > notes, so that we can see that we aren't nuts.. > that others do feel > > the > > same weird way. > > > > Topper () > > > ________________________________________________________________________________\ ____ It's here! Your new message! Get new email alerts with the free Yahoo! Toolbar. http://tools.search.yahoo.com/toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Fluoride is a toxic waste substance that the government could not figure out what to do with the massive extra quantities of, so the lie was perpetrated on the public about the benefits to the teeth of this stuff. It causes brittler bones, though thick temporarily, same thing with the teeth. It is extremely toxic to the thyroid, and, whatsmore, used to be used to quell a thyroid storm attack and hyperthyroidism. That has been grossly documented through time, not just a supposition or a guess. Great Britain has outlawed it's use in their waters recently because of all of this, but the U.S. just doesn't seem to think it's people are smart enough to catch on, I don't guess. After all, what would they do with all this toxic waste and where would they put it? It blocks the thyroid hormones, this is a well known fact. Re: RAI after effects > Is there a connection between flouride water and > thyroid ailments? > > My sisters and I did grow up drinking floridated > water, but my husband did not. Since we currently > live in the county and have well water, we do not have > flouride in the water. (My kids do have more cavities > than I ever did). Has there been research on this? > It's very interesting. > > I did not want RAI, but my doctor insisted due to my > racing heart. (He kept increasing the beta-blocker > dosage and I couldn't hardly walk up stairs without > getting winded). Why did I become HYPER (with Graves) > when my sisters and parents are HYPO? I did have > gestational diabetes (all three pregnancies) so that > might have something to do with it. > > I appreciate your comments. I will check back often > because these after effects of RAI are frustrating > since no doctor will confirm my symptoms are a result > of RAI. > > Thank you, all. > Dot > --- Ken & Jackie Reimer quest4us@...> > wrote: > >> Coincidence? I spoke to a gal I grew up across the >> street from, >> guess what? She has Hashimotos. We went to the same >> schools, lived >> in the same neighborhood.... probably shopped at the >> same >> grocery.... It makes me wonder, how many other kids >> did I grow up >> with that ended up with a thyroid problem that we >> just lost touch of? >> >> We grew up in CHicago, so can you say FLUORIDE in >> the water? >> >> >> jackie Quote Link to comment Share on other sites More sharing options...
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