Hello McMurf2 I'm 50 and recently too, and recently diagnosed Graves. Had bad reaction to Methimazole (temperature) then told instead of 10mg which did for 2 weeks, told try 5mg, 6 hours after that along with Acetaminophen (which found out after the ordeals!! including ER) not take anymore either unless until Gd willing my liver and white blood cells return to normal. There was concern neutrophils. Spent 6hours overnight ER with 15ml blood tests, previous to that had blood tests that same afternoon. Then dr. endocrinologist wanted me to see him in person after that all-nighter at ER, but I opted for an online visit instead. He was so do you want Radiation Iodine or Surgery. And said he not familiar with the possible risks of surgery. I was can I talk to a surgeon combined w/ you at our next appointment, He was nope. Not refusing my talk to surgeon, but had not arranged one for me to talk to either. I'd seen Express Care after 2 days of temp. increase when my thermometer stopped working/not work the first day I had temp. showed 100.8F or 100.5F and then in 99.4F or a couple hours after left Express Care. Express Nurse said I'm not versed in thyroid, but if want I can put prescription lower the 10mg to 5mg and that I should contact my endocrinologist. I called (but it also a NEW NuRSE not just new to clinic but NEW, but I asked if Acetaminophen okay or not?) She put me on hold. I still waited. Then I called back and told okay, but this time it like 2pm. Well, anyways the 5mg , 6hrs later I woke 2amish with chills and shaking, I've never had this before in my life scary for 2 hours. Then it stop, I go for labs. I call when I see results, told NO more Acetaminophen, but only after 2nd calls they left vmail and I see in online, not said during that initial call I MADE to them. Then they also say keep phone near me. I go in shower, as barely done get another call, then anotehr told Go to ER right now, as possibly neutrophils. ER doc says things hopefully go back he think to normal of my liver and white blood cells, since i only took 2 days worth of Acetaminophen and stopped the Methimazole. I am debating on my current choices of Radiation Iodine or Surgery. I am feeling frustrated with my endocrinologist and my primary care doctor. Both are new to me, but the primary is pretty new to been practicing, the endocrin. for some years ( the nurse asisgned at the endoc. is brand new too). And Graves make me leads anxiety as it is. This "new'' is not helping. And the Amer. Thyroid Assoc. website says if fever stop antithyroid immediately. And it was the endocrin. who was the one who told me I could go to this website when I first got my diagnosis confirmed by him the day after seeing the available type of primary doct. available at the same office where my 'new' primary doctor is located. Oh and my primary doc. is an DO with MPH. The endoc. specializes in thyroid got referral to his office from the primary care doc's office. The doc. that was there when my primary doc. not that day, I asked his opinion as well as my primary doc. on my choices radiation iodine or surgery; the one that diagnosed me that day when my primary doc not there wrote back the next morning, but my primary doc. has yet to do so. OH and shortly after my diagnosis, I was told by their office manager that my primary doc. is to be out for 4weks, but he'd not mentioned that to me during our visit online the previous day (but his online message said when he not able sometimes 24-48 hrs or longer that his staff respond for him, soon so I can get care) I'm frustrated!! I'm thank Gd glad that ER doc expects me back to 'normal' and just in case petri dishes besides those blood tests taken at ER. And my endoc. said go back for blood tests this week and again next week to check my liver and white blood cells. Meanwhile I'm to make the choice of radiation iodine or surgery. OH and if the 1st dose as sometimes not enough the 2nd dose radiation iodine or surgery! And I've been (and I'd asked; see above) )what are risks of each? Please what yours and or others experience on this ???
Are there any support groups for Graves Disease? Online or face-to-face in Minnesota? I feel very alone in this. I don’t know anyone else with the disease. It’s been a rough ride.
I'm not in Minnesota, but I hear /feel ya melrosejagger. I hope for complete healing and success for you. I wrote below/above/ here about my 'current' situation.
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Hello McMurf2 I'm 50 and recently too, and recently diagnosed Graves. Had bad reaction to Methimazole (temperature) then told instead of 10mg which did for 2 weeks, told try 5mg, 6 hours after that along with Acetaminophen (which found out after the ordeals!! including ER) not take anymore either unless until Gd willing my liver and white blood cells return to normal. There was concern neutrophils. Spent 6hours overnight ER with 15ml blood tests, previous to that had blood tests that same afternoon. Then dr. endocrinologist wanted me to see him in person after that all-nighter at ER, but I opted for an online visit instead. He was so do you want Radiation Iodine or Surgery. And said he not familiar with the possible risks of surgery. I was can I talk to a surgeon combined w/ you at our next appointment, He was nope. Not refusing my talk to surgeon, but had not arranged one for me to talk to either. I'd seen Express Care after 2 days of temp. increase when my thermometer stopped working/not work the first day I had temp. showed 100.8F or 100.5F and then in 99.4F or a couple hours after left Express Care. Express Nurse said I'm not versed in thyroid, but if want I can put prescription lower the 10mg to 5mg and that I should contact my endocrinologist. I called (but it also a NEW NuRSE not just new to clinic but NEW, but I asked if Acetaminophen okay or not?) She put me on hold. I still waited. Then I called back and told okay, but this time it like 2pm. Well, anyways the 5mg , 6hrs later I woke 2amish with chills and shaking, I've never had this before in my life scary for 2 hours. Then it stop, I go for labs. I call when I see results, told NO more Acetaminophen, but only after 2nd calls they left vmail and I see in online, not said during that initial call I MADE to them. Then they also say keep phone near me. I go in shower, as barely done get another call, then anotehr told Go to ER right now, as possibly neutrophils. ER doc says things hopefully go back he think to normal of my liver and white blood cells, since i only took 2 days worth of Acetaminophen and stopped the Methimazole. I am debating on my current choices of Radiation Iodine or Surgery. I am feeling frustrated with my endocrinologist and my primary care doctor. Both are new to me, but the primary is pretty new to been practicing, the endocrin. for some years ( the nurse asisgned at the endoc. is brand new too). And Graves make me leads anxiety as it is. This "new'' is not helping. And the Amer. Thyroid Assoc. website says if fever stop antithyroid immediately. And it was the endocrin. who was the one who told me I could go to this website when I first got my diagnosis confirmed by him the day after seeing the available type of primary doct. available at the same office where my 'new' primary doctor is located. Oh and my primary doc. is an DO with MPH. The endoc. specializes in thyroid got referral to his office from the primary care doc's office. The doc. that was there when my primary doc. not that day, I asked his opinion as well as my primary doc. on my choices radiation iodine or surgery; the one that diagnosed me that day when my primary doc not there wrote back the next morning, but my primary doc. has yet to do so. OH and shortly after my diagnosis, I was told by their office manager that my primary doc. is to be out for 4weks, but he'd not mentioned that to me during our visit online the previous day (but his online message said when he not able sometimes 24-48 hrs or longer that his staff respond for him, soon so I can get care) I'm frustrated!! I'm thank Gd glad that ER doc expects me back to 'normal' and just in case petri dishes besides those blood tests taken at ER. And my endoc. said go back for blood tests this week and again next week to check my liver and white blood cells. Meanwhile I'm to make the choice of radiation iodine or surgery. OH and if the 1st dose as sometimes not enough the 2nd dose radiation iodine or surgery! And I've been (and I'd asked; see above) )what are risks of each? Please what yours and or others experience on this ???
I'm not in Minnesota, but I hear /feel ya melrosejagger. I hope for complete healing and success for you. I wrote below/above/ here about my 'current' situation.