Guest guest Posted August 31, 2007 Report Share Posted August 31, 2007 Oh (((Gail))), That does not sound pleasant at all! I'm glad you are seeing the doc soon. I really hope you get some relief and can enjoy the long weekend. Hugs, Houston, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2007 Report Share Posted August 31, 2007 Oh (((Gail))), That does not sound pleasant at all! I'm glad you are seeing the doc soon. I really hope you get some relief and can enjoy the long weekend. Hugs, Houston, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2007 Report Share Posted August 31, 2007 Gail, I'm so sorry to hear your update. Do you feel worse than before starting the Rituxin? I mean with your joints being swollen and hurting? If so, I would not think that was good. Hopefully you can snuggle up and know we love you. Good thoughts, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2007 Report Share Posted August 31, 2007 Gail, I'm so sorry to hear your update. Do you feel worse than before starting the Rituxin? I mean with your joints being swollen and hurting? If so, I would not think that was good. Hopefully you can snuggle up and know we love you. Good thoughts, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2007 Report Share Posted August 31, 2007 Gail, I'm so sorry to hear your update. Do you feel worse than before starting the Rituxin? I mean with your joints being swollen and hurting? If so, I would not think that was good. Hopefully you can snuggle up and know we love you. Good thoughts, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2007 Report Share Posted August 31, 2007 Gail: I'm so sorry the Rituxan isn't working for you. How long is it supposed to take before you start feeling better? Personally, I'm one of those that don't qualify for any injectables for various reasons so pain meds are the only thing I can do, that and prednisone (ick!). You're in my heart and my prayers. Good luck with the doctor and I hope you find relief soon. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2007 Report Share Posted August 31, 2007 Gail: I'm so sorry the Rituxan isn't working for you. How long is it supposed to take before you start feeling better? Personally, I'm one of those that don't qualify for any injectables for various reasons so pain meds are the only thing I can do, that and prednisone (ick!). You're in my heart and my prayers. Good luck with the doctor and I hope you find relief soon. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2007 Report Share Posted August 31, 2007 Gail: I'm so sorry the Rituxan isn't working for you. How long is it supposed to take before you start feeling better? Personally, I'm one of those that don't qualify for any injectables for various reasons so pain meds are the only thing I can do, that and prednisone (ick!). You're in my heart and my prayers. Good luck with the doctor and I hope you find relief soon. Take care and be well. Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2007 Report Share Posted September 1, 2007 Gail..That does not sound right..I hope the doctor knows whats the best thing to do. Let us know if today is better..Try to find a good movie ...Love Liz ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2007 Report Share Posted September 1, 2007 Gail..That does not sound right..I hope the doctor knows whats the best thing to do. Let us know if today is better..Try to find a good movie ...Love Liz ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2007 Report Share Posted September 1, 2007 Gail..That does not sound right..I hope the doctor knows whats the best thing to do. Let us know if today is better..Try to find a good movie ...Love Liz ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2007 Report Share Posted September 1, 2007 Gail, I'm sorry you're feeling so bad. Has anyone here had successful results from Rituxen? I'd be very interested to hear as that may be the next step for me. I've tried Kineret, Enbrel and Humira...to no avail. I'm going to the Cleveland Clinic in October...maybe they have a new drug for those of us the usual stuff doesn't work. My doctor said there are experiments with a new drug that blocks the IL 7 receptor (I think that's right)....but it's probably only available in Japan right now. I'm just real curious to hear if anyone's had good results from Rituxen. Meanwhile, Gail, get as much rest as you can...and I hope you feel better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2007 Report Share Posted September 1, 2007 Gail, I'm sorry you're feeling so bad. Has anyone here had successful results from Rituxen? I'd be very interested to hear as that may be the next step for me. I've tried Kineret, Enbrel and Humira...to no avail. I'm going to the Cleveland Clinic in October...maybe they have a new drug for those of us the usual stuff doesn't work. My doctor said there are experiments with a new drug that blocks the IL 7 receptor (I think that's right)....but it's probably only available in Japan right now. I'm just real curious to hear if anyone's had good results from Rituxen. Meanwhile, Gail, get as much rest as you can...and I hope you feel better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2007 Report Share Posted September 1, 2007 Gail, I'm sorry you're feeling so bad. Has anyone here had successful results from Rituxen? I'd be very interested to hear as that may be the next step for me. I've tried Kineret, Enbrel and Humira...to no avail. I'm going to the Cleveland Clinic in October...maybe they have a new drug for those of us the usual stuff doesn't work. My doctor said there are experiments with a new drug that blocks the IL 7 receptor (I think that's right)....but it's probably only available in Japan right now. I'm just real curious to hear if anyone's had good results from Rituxen. Meanwhile, Gail, get as much rest as you can...and I hope you feel better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2007 Report Share Posted September 1, 2007 Gail, Just wanted you to know I'm so sorry the Rituxan isn't working. I would definitely bring this up with your doc. Jeez, makes me have a few butterflies about going for my first infusion of Rituxan on the 10th. Please let us know what your doc says. I will be very interested in your progress. Hang in there... Branson, MO Gail wrote: Hey, gang, just an update on me. I had my third Rituxan treatment last week. With the last one, I felt awful for 3-4 days, achy with swollen joints. This time, it's been more than a week and I still feel terrible. I am back to taking my pain meds around the clock. My left hand is swollen, too. I also feel very tired. I see my doc next Tuesday. I am going to talk to him about this seeing as I feel worse every time I get the treatment. Hope the rest of you are doing okay. Gail (KY) --------------------------------- Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2007 Report Share Posted September 1, 2007 Gail, Just wanted you to know I'm so sorry the Rituxan isn't working. I would definitely bring this up with your doc. Jeez, makes me have a few butterflies about going for my first infusion of Rituxan on the 10th. Please let us know what your doc says. I will be very interested in your progress. Hang in there... Branson, MO Gail wrote: Hey, gang, just an update on me. I had my third Rituxan treatment last week. With the last one, I felt awful for 3-4 days, achy with swollen joints. This time, it's been more than a week and I still feel terrible. I am back to taking my pain meds around the clock. My left hand is swollen, too. I also feel very tired. I see my doc next Tuesday. I am going to talk to him about this seeing as I feel worse every time I get the treatment. Hope the rest of you are doing okay. Gail (KY) --------------------------------- Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2007 Report Share Posted September 1, 2007 Gail, Just wanted you to know I'm so sorry the Rituxan isn't working. I would definitely bring this up with your doc. Jeez, makes me have a few butterflies about going for my first infusion of Rituxan on the 10th. Please let us know what your doc says. I will be very interested in your progress. Hang in there... Branson, MO Gail wrote: Hey, gang, just an update on me. I had my third Rituxan treatment last week. With the last one, I felt awful for 3-4 days, achy with swollen joints. This time, it's been more than a week and I still feel terrible. I am back to taking my pain meds around the clock. My left hand is swollen, too. I also feel very tired. I see my doc next Tuesday. I am going to talk to him about this seeing as I feel worse every time I get the treatment. Hope the rest of you are doing okay. Gail (KY) --------------------------------- Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2011 Report Share Posted June 20, 2011 Two weeks ago I had a doctors appointment, she raised my estriol and estradiol and told me to cut down on my Naturethroid by 1/2 grain. T4 was 8.6 ( ref. 4.5-10.8 ) My T3 was high at 5.6 (ref. is 2.3-4.2 ) and she wanted it to come down. I also added iron supplements due to the lower MCV number of 84.3. I asked for a ferritin test the last time and she said I didn't need it. Should I get a ferritin test now to see where I'm at? I've been supplementing and felt good for about a week then the headaches started so I don't know if the iron is causing this or the higher dose of Estrogens? My heart rate has been in the 90's on and off which bothers me, I thought it could possibly be due to the iron helping the T3 to convert? My BP is all over the place up and then low, I don't know what the heck is going on. She also told me not to take more than 25mg of Iodine. She doesn't believe in any higher doses. I've been having a hard time taking Iodine in higher doses than 12.5 and even at that low dose I get headaches. I seem to get a headache with everything I do. I only want to change one thing at a time but don't know what to start with. I suffer from insulin resistance and have gotten my fasting insulin down from 48 to 28. I thought this also played a large part if T3 is converting. I was doing so well and then this. I need help sorting this mess out. Louise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2011 Report Share Posted June 21, 2011 According to her since my MCV was not low at that time ( but very close ) she told me I was good with ferritin. What could I say back? I'm taking bio identical hormones. I take Iodoral, do they use any type of filler in this? I was very sick from taking the new Armour from their filler. I don't think it's detoxing, I have tried Iodine five years ago and had this same results and since then tried taking it many times. Recently I tried it two more times and can't deal with a migraine headache for months. The headaches were this bad and lasted weeks at a time until I stopped taking idodine. I have no idea why this is happening to me. I tried to raise it at one point and it made it worse. I even lowered it to 6 mg and the headache would not go away until I quit taking idodine. I understand detox but this seems much more than that. On Jun 21, 2011, at 9:59 AM, Ariel Monserrat wrote: How does she "know" you don't need a ferritin test, did she say?Are these estrogens natural or synthetic? makes a sizeable difference. The reactions to iodine may be because you're detoxing.Others on this list will know more than I do, though. ArielOn Tue, Jun 21, 2011 at 12:27 AM, LouiseH <loubob@...> wrote: Two weeks ago I had a doctors appointment, she raised my estriol and estradiol and told me to cut down on my Naturethroid by 1/2 grain. T4 was 8.6 ( ref. 4.5-10.8 ) My T3 was high at 5.6 (ref. is 2.3-4.2 ) and she wanted it to come down. I also added iron supplements due to the lower MCV number of 84.3. I asked for a ferritin test the last time and she said I didn't need it. Should I get a ferritin test now to see where I'm at? I've been supplementing and felt good for about a week then the headaches started so I don't know if the iron is causing this or the higher dose of Estrogens? My heart rate has been in the 90's on and off which bothers me, I thought it could possibly be due to the iron helping the T3 to convert? My BP is all over the place up and then low, I don't know what the heck is going on. She also told me not to take more than 25mg of Iodine. She doesn't believe in any higher doses. I've been having a hard time taking Iodine in higher doses than 12.5 and even at that low dose I get headaches. I seem to get a headache with everything I do. I only want to change one thing at a time but don't know what to start with. I suffer from insulin resistance and have gotten my fasting insulin down from 48 to 28. I thought this also played a large part if T3 is converting. I was doing so well and then this. I need help sorting this mess out. Louise -- "Throughout much of the world, most people are busy being boring."-Tom Donohue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2011 Report Share Posted June 21, 2011 Are you using the companion nutrients? What you describe is what happens to me when I have not taken the companion nutrients but have taken the iodine (occasionally I have forgotten to take the rest of my med regine) and once I take the rest of the nutrients I start feeling better. I especially don't like taking the salt - I've never been a salty person - I have always liked more sweet tastes - so if I miss the salt I get the headache/migraine. I must say the idea of salt is no longer as negative since I have been feeling better thanks to it. Higgins http://becomingaspecialneedsadvocate.blogspot.com/ Re: feeling bad According to her since my MCV was not low at that time ( but very close ) she told me I was good with ferritin. What could I say back? I'm taking bio identical hormones. I take Iodoral, do they use any type of filler in this? I was very sick from taking the new Armour from their filler. I don't think it's detoxing, I have tried Iodine five years ago and had this same results and since then tried taking it many times. Recently I tried it two more times and can't deal with a migraine headache for months. The headaches were this bad and lasted weeks at a time until I stopped taking idodine. I have no idea why this is happening to me. I tried to raise it at one point and it made it worse. I even lowered it to 6 mg and the headache would not go away until I quit taking idodine. I understand detox but this seems much more than that. On Jun 21, 2011, at 9:59 AM, Ariel M onserrat wrote: How does she "know" you don't need a ferritin test, did she say? Are these estrogens natural or synthetic? makes a sizeable difference. The reactions to iodine may be because you're detoxing. Others on this list will know more than I do, though. Ariel On Tue, Jun 21, 2011 at 12:27 AM, LouiseH <loubob@...> wrote: Two weeks ago I had a doctors appointment, she raised my estriol and estradiol and told me to cut down on my Naturethroid by 1/2 grain. T4 was 8.6 ( ref. 4.5-10.8 ) My T3 was high at 5.6 (ref. is 2.3-4.2 ) and she wanted it to come down. I also added iron supplements due to the lower MCV number of 84.3. I asked for a ferritin test the last time and she said I didn't need it. Should I get a ferritin test now to see where I'm at? I've been supplementing and felt good for about a week then the headaches started so I don't know if the iron is causing this or the higher dose of Estrogens? My heart rate has been in the 90's on and off which bothers me, I thought it could possibly be due to the iron helping the T3 to convert? My BP is all over the place up and then low, I don't know what the heck is going on. She also told me not to take more than 25mg of Iodine. She doesn't believe in any higher doses. I've been having a hard time taking Iodine in higher doses than 12.5 and even at that low dose I get headaches. I seem to get a headache with everything I do. I only want to change one thing at a time but don't know what to start with. I suffer from insulin resistance and have gotten my fasting insulin down from 48 to 28. I thought this also played a large part if T3 is converting. I was doing so well and then this. I need help sorting this mess out. Louise -- "Throughout much of the world, most people are busy being boring." -Tom Donohue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2011 Report Share Posted June 21, 2011 My doc tests both MCV and ferritin, fwiw. Jaye > > > > Two weeks ago I had a doctors appointment, she raised my estriol and estradiol and told me to cut down on my Naturethroid by 1/2 grain. T4 was 8.6 ( ref. 4.5-10.8 ) My T3 was high at 5.6 (ref. is 2.3-4.2 ) and she wanted it to come down. I also added iron supplements due to the lower MCV number of 84.3. I asked for a ferritin test the last time and she said I didn't need it. Should I get a ferritin test now to see where I'm at? I've been supplementing and felt good for about a week then the headaches started so I don't know if the iron is causing this or the higher dose of Estrogens? My heart rate has been in the 90's on and off which bothers me, I thought it could possibly be due to the iron helping the T3 to convert? My BP is all over the place up and then low, I don't know what the heck is going on. > > > > She also told me not to take more than 25mg of Iodine. She doesn't believe in any higher doses. I've been having a hard time taking Iodine in higher doses than 12.5 and even at that low dose I get headaches. I seem to get a headache with everything I do. I only want to change one thing at a time but don't know what to start with. > > > > I suffer from insulin resistance and have gotten my fasting insulin down from 48 to 28. I thought this also played a large part if T3 is converting. I was doing so well and then this. > > > > I need help sorting this mess out. > > > > Louise > > > > > > > > > > -- > > " Throughout much of the world, most people are busy being boring. " > > -Tom Donohue > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2011 Report Share Posted June 21, 2011 Should I quit taking my iron supplements for five days and get a ferritin test? On Jun 21, 2011, at 2:32 PM, jprocure@... wrote: My doc tests both MCV and ferritin, fwiw. Jaye > > > > Two weeks ago I had a doctors appointment, she raised my estriol and estradiol and told me to cut down on my Naturethroid by 1/2 grain. T4 was 8.6 ( ref. 4.5-10.8 ) My T3 was high at 5.6 (ref. is 2.3-4.2 ) and she wanted it to come down. I also added iron supplements due to the lower MCV number of 84.3. I asked for a ferritin test the last time and she said I didn't need it. Should I get a ferritin test now to see where I'm at? I've been supplementing and felt good for about a week then the headaches started so I don't know if the iron is causing this or the higher dose of Estrogens? My heart rate has been in the 90's on and off which bothers me, I thought it could possibly be due to the iron helping the T3 to convert? My BP is all over the place up and then low, I don't know what the heck is going on. > > > > She also told me not to take more than 25mg of Iodine. She doesn't believe in any higher doses. I've been having a hard time taking Iodine in higher doses than 12.5 and even at that low dose I get headaches. I seem to get a headache with everything I do. I only want to change one thing at a time but don't know what to start with. > > > > I suffer from insulin resistance and have gotten my fasting insulin down from 48 to 28. I thought this also played a large part if T3 is converting. I was doing so well and then this. > > > > I need help sorting this mess out. > > > > Louise > > > > > > > > > > -- > > "Throughout much of the world, most people are busy being boring." > > -Tom Donohue > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2011 Report Share Posted June 21, 2011 Yes I started taking the companion supplements a few weeks before starting on Iodine. I like the salt and don't have an issue with that part. On Jun 21, 2011, at 2:15 PM, wrote: Are you using the companion nutrients? What you describe is what happens to me when I have not taken the companion nutrients but have taken the iodine (occasionally I have forgotten to take the rest of my med regine) and once I take the rest of the nutrients I start feeling better. I especially don't like taking the salt - I've never been a salty person - I have always liked more sweet tastes - so if I miss the salt I get the headache/migraine. I must say the idea of salt is no longer as negative since I have been feeling better thanks to it. Higgins http://becomingaspecialneedsadvocate.blogspot.com/ Re: feeling bad According to her since my MCV was not low at that time ( but very close ) she told me I was good with ferritin. What could I say back? I'm taking bio identical hormones. I take Iodoral, do they use any type of filler in this? I was very sick from taking the new Armour from their filler. I don't think it's detoxing, I have tried Iodine five years ago and had this same results and since then tried taking it many times. Recently I tried it two more times and can't deal with a migraine headache for months. The headaches were this bad and lasted weeks at a time until I stopped taking idodine. I have no idea why this is happening to me. I tried to raise it at one point and it made it worse. I even lowered it to 6 mg and the headache would not go away until I quit taking idodine. I understand detox but this seems much more than that. On Jun 21, 2011, at 9:59 AM, Ariel M onserrat wrote: How does she "know" you don't need a ferritin test, did she say? Are these estrogens natural or synthetic? makes a sizeable difference. The reactions to iodine may be because you're detoxing. Others on this list will know more than I do, though. Ariel On Tue, Jun 21, 2011 at 12:27 AM, LouiseH <loubob@...> wrote: Two weeks ago I had a doctors appointment, she raised my estriol and estradiol and told me to cut down on my Naturethroid by 1/2 grain. T4 was 8.6 ( ref. 4.5-10.8 ) My T3 was high at 5.6 (ref. is 2.3-4.2 ) and she wanted it to come down. I also added iron supplements due to the lower MCV number of 84.3. I asked for a ferritin test the last time and she said I didn't need it. Should I get a ferritin test now to see where I'm at? I've been supplementing and felt good for about a week then the headaches started so I don't know if the iron is causing this or the higher dose of Estrogens? My heart rate has been in the 90's on and off which bothers me, I thought it could possibly be due to the iron helping the T3 to convert? My BP is all over the place up and then low, I don't know what the heck is going on. She also told me not to take more than 25mg of Iodine. She doesn't believe in any higher doses. I've been having a hard time taking Iodine in higher doses than 12.5 and even at that low dose I get headaches. I seem to get a headache with everything I do. I only want to change one thing at a time but don't know what to start with. I suffer from insulin resistance and have gotten my fasting insulin down from 48 to 28. I thought this also played a large part if T3 is converting. I was doing so well and then this. I need help sorting this mess out. Louise -- "Throughout much of the world, most people are busy being boring." -Tom Donohue Quote Link to comment Share on other sites More sharing options...
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