Χά�ων Posted August 1, 2017 Share Posted August 1, 2017 Yep. Please share your experiences, I am a bit nervous about going in for treatment later this week. Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted August 1, 2017 Share Posted August 1, 2017 What are they recommending as a treatment and what do you have? Grave's Disease? I have Graves Disease. My thyroid was killed with radioactive iodine. Quote Link to comment Share on other sites More sharing options...
Χά�ων Posted August 1, 2017 Author Share Posted August 1, 2017 The nurse stressed that the doctor wants to discuss options and the rest of the lab results at an appointment this week. I couldn't get anything else out of them Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted August 1, 2017 Share Posted August 1, 2017 Oh, so you aren't really sure yet exactly what the issue is, but they confirmed you have hyperthyroidism? FWIW, I was diagnosed in my mid-20s, so many years ago now. My thyroid was significantly enlarged and my resting heart rate was about 120bpm. I was eating upwards of 6 full meals a day, not gaining weight, but constantly hungry. I had to be put on beta blockers. They shut down my thyroid with radioative iodine. I sat in a room with no one else around. Eventually a man in a very large radiation suit came in carrying a large container with a tiny screw cap. He unscrewed the cap, poured a fairly large pill into a tiny paper cup and I was asked to swallow it with a glass of water that was sitting on the table. I admit I was rather intimidated by swallowing that pill but after a long pause I did so. Honestly, I don't recall any side effects but it has been a long time. Eventually I was put on thyroid replacement meds and have been taking those ever since. I have had some ignorant GPs goof up my system over the years so I do recommend being monitored by an endocrinologist at least periodically but really things have overall been better since they shut down my thyroid. It was on overdrive. 1 Quote Link to comment Share on other sites More sharing options...
KathyBC Posted August 1, 2017 Share Posted August 1, 2017 (edited) My sister and I both have had hyperthyroidism. Both of us received the same initial treatment - use of PropylThyracil (propylthiouracil - spelling varies) prescription, along with regular bloodwork to check on its effectiveness. I also had beta blockers for the first month to bring my resting pulse to under 100, can't remember if she had that or not. Mine was caught early, my body responded well to meds, and I went for a very long time on a PTU prescription before having radioactive iodine treatment. My sister's thyroid had been missed for some time, she did not respond enough to meds and had the radioactive iodine treatment much sooner than I did. Your nurse is surely correct - your doctor will go over lab results and explain your options. If you want to do some research and read up on hyper/hypo thyroidism in the meantime, it can only help. Edited August 1, 2017 by KathyBC 1 Quote Link to comment Share on other sites More sharing options...
Χά�ων Posted August 1, 2017 Author Share Posted August 1, 2017 Oh, so you aren't really sure yet exactly what the issue is, but they confirmed you have hyperthyroidism? . Correct 1 Quote Link to comment Share on other sites More sharing options...
Pippen Posted August 1, 2017 Share Posted August 1, 2017 At the first appointment the doctor went through lab results and then ordered a radioactive thyroid test, which showed my thyroid was enlarged. I do have Grave's, but very few symptoms so she gave me the option of destroying the thyroid or to try meds. I've done really well on a low dose of Methimazole so I just go in every three months for blood work. She also put me on Vitamin D since an overactive thyroid depletes it. 1 Quote Link to comment Share on other sites More sharing options...
displace Posted August 1, 2017 Share Posted August 1, 2017 In case you don't know, after taking meds to destroy your thyroid, you will be on thyroid supplement to achieve a normal thyroid level. Because hyperthyroidism can be more dangerous than hypo, they are more aggressive about it. Sometimes they choose to do surgery to remove the thyroid instead. But, I imagine first meds will be offered if possible, then another option to remove or stop your thyroid from working. Radioactive meds cannot be taken while pregnant. 2 Quote Link to comment Share on other sites More sharing options...
Joules Posted August 1, 2017 Share Posted August 1, 2017 I have Grave's and still have my thyroid. I'm in remission. I got really very sick before anyone knew what was wrong, nearly 20 years ago now. I was treated with PTU and beta blockers. After about 18 months, I started having liver issues so they took me off the PTU expecting my thyroid to go sky high and do radiation. But it didn't. My TSH stayed undetectable for years, but my thyroid levels were normal. I've six more flares, usually during stressful times in my life, but beta-blockers have helped, in addition to chilling out. We've debated on surgery, but mostly we just manage. I think my story is unusual, but I wanted to share to say there are many ways that this can go. I've seen quite a few endos, some are completely pro-surgery, some pro-radiation, and some a mix. Some are willing to try the meds and see. Don't be afraid to get a second opinion and push back with questions. But get on meds if you want to wait on a final treatment or for a second opinion appointment. Untreated, Grave's is very dangerous. 2 Quote Link to comment Share on other sites More sharing options...
JumpyTheFrog Posted August 1, 2017 Share Posted August 1, 2017 (edited) I went hyperthyroid eight years ago. It may have been caused by taking too much iodine or from giving birth about five months earlier. I stopped the iodine but my TSH continued to drop. (I didn't have any Grave's antibodies.) My MD prescribed about 8-10 vitamin C IVs (I think I went twice a week for a month). At the end, my thyroid numbers were back to normal. Edited August 1, 2017 by HoppyTheToad 1 Quote Link to comment Share on other sites More sharing options...
frugalmamatx Posted August 1, 2017 Share Posted August 1, 2017 At the first appointment the doctor went through lab results and then ordered a radioactive thyroid test, which showed my thyroid was enlarged. I do have Grave's, but very few symptoms so she gave me the option of destroying the thyroid or to try meds. I've done really well on a low dose of Methimazole so I just go in every three months for blood work. She also put me on Vitamin D since an overactive thyroid depletes it. I've had chronically low Vit D for nearly a decade, and been on Methimazole for that time to treat graves as well. Not ONCE has anyone mentioned a link between the two. I'm floored to know there is an actual cause for why my body cant seem to produce Vit D in any amount. OP - I urge you to try meds first before burning out your thyroid with Iodine. Most american doctors are radiation and surgery happy, where most European ones lean towards meds. I've been on Methimazole for nearly 10 years now with no side effects. My dose has dropped dramatically over that time, and I'm now at such a low dose that it's considered "maintenance" 4 Quote Link to comment Share on other sites More sharing options...
KathyBC Posted August 1, 2017 Share Posted August 1, 2017 OP - I urge you to try meds first before burning out your thyroid with Iodine. Most american doctors are radiation and surgery happy, where most European ones lean towards meds. I've been on Methimazole for nearly 10 years now with no side effects. My dose has dropped dramatically over that time, and I'm now at such a low dose that it's considered "maintenance" This is interesting to me, not sure if worthy of its own spin-off. Initially I was in child-bearing/nursing years and stuck with meds, too. After more than ten years, however, I had a couple of doctors I trusted, as well as an endocrinologist, speculate that continually suppressing an overactive thyroid is maybe not as good a long-term plan as having a synthetic version of something your body makes naturally in your body. So that was what persuaded me to make the change. Quote Link to comment Share on other sites More sharing options...
Χά�ων Posted August 1, 2017 Author Share Posted August 1, 2017 OP - I urge you to try meds first before burning out your thyroid with Iodine. Most american doctors are radiation and surgery happy, where most European ones lean towards meds. I've been on Methimazole for nearly 10 years now with no side effects. My dose has dropped dramatically over that time, and I'm now at such a low dose that it's considered "maintenance" I hesitate about any and all medications. You know that teeny tiny percentage that has off the wall weirs side effects to even simple medications? Yeah me. Quote Link to comment Share on other sites More sharing options...
wonderchica Posted August 1, 2017 Share Posted August 1, 2017 I understand being hesitant about meds. Unfortunately though, you will likely end up on one or the other. Either the Med to control hyper, or if they kill your thyroid you'll have to take thyroid replacement. 1 Quote Link to comment Share on other sites More sharing options...
frugalmamatx Posted August 1, 2017 Share Posted August 1, 2017 I hesitate about any and all medications. You know that teeny tiny percentage that has off the wall weirs side effects to even simple medications? Yeah me. Me too. That's part of why I've refused surgery / radiation because of the possible side effects of the meds to fix the resulting low thyroid. This is interesting to me, not sure if worthy of its own spin-off. Initially I was in child-bearing/nursing years and stuck with meds, too. After more than ten years, however, I had a couple of doctors I trusted, as well as an endocrinologist, speculate that continually suppressing an overactive thyroid is maybe not as good a long-term plan as having a synthetic version of something your body makes naturally in your body. So that was what persuaded me to make the change. Interesting. The studies I've read out of Europe and Japan all say that over time the thyroid will usually burn itself out naturally and gradually shift to hypo. Medication to treat until then is common there. The only hiccup can be pregnancy - PTU is recommended over Methimazole during pregnancy. But after reading the studies, and talking with my endo, we both are comfortable with me considering a pregnancy while on a very low dose of methimazole {I can't take PTU due to the white blood cell reaction}. It will make me high risk though so it's not without downsides. The synthetic versions of replacements can have their own issues as well - I remember some people have trouble converting the synthetic version of T3 or t4 into the version the body breaks down natural hormones into. So you can have levels that say normal and fine, but still actually feel like crud from being hypo And on a completely unrelated note - Going Gluten free has resolved a LOT of my Grave's disease issues. I don't know if I'm celiac or not, but I definitely am gluten sensitive. Load me up on gluten and my thyroid goes crazy. Quote Link to comment Share on other sites More sharing options...
Χά�ων Posted August 2, 2017 Author Share Posted August 2, 2017 I have read that it can be triggered by a stressful event, is that the case with anyone else? We can pin point when I changed to a period of time when I was in the midst of 4 or the top life stressors. I said shortly after that I felt like I broke and even with counseling and a pyschiatrist to try meds for my mood, it has not helped. I am incredibly angry that it was caught a year ago and they did nothing, not even a phone call to tell me, and they did call to tell me other, sognificantly more minor, test results -that I am not diabetic. Quote Link to comment Share on other sites More sharing options...
Murphy101 Posted August 2, 2017 Share Posted August 2, 2017 I have read that it can be triggered by a stressful event, is that the case with anyone else? We can pin point when I changed to a period of time when I was in the midst of 4 or the top life stressors. I said shortly after that I felt like I broke and even with counseling and a pyschiatrist to try meds for my mood, it has not helped. I am incredibly angry that it was caught a year ago and they did nothing, not even a phone call to tell me, and they did call to tell me other, sognificantly more minor, test results -that I am not diabetic. Timely thread bc my bloodwork just came in yesterday and I'm looking like I have hypothyroid. If a stress event caused it I'm pinning money on baby#10's delivery. I too felt like I never fully recovered from that. Even when I lost a lot of weight, I was soooo much better but still had terrible energy and brain fog and it's gotten horribly worse. I have joked that baby 10 got my last brain celll and now I'm working at a deficit. All my blood work came back great except Vit D and TSH. Which is extra frustrating bc I take 5000IU daily of VitD and spend hours outside. I'm supposed to go in for more blood work later this week and to discuss our plan of treatment. Hopefully it's not too late for synthetic thyroid supplementation and that's safe while breastfeeding. I'm actually very hopeful bc I've not been happy and have been really struggling with many of my symptoms for a long time now and kept being told well I have all these kids or i was probably depressed. So fingers crossed and praying hard that in a couple months I'll be starting to feel like my more myself again. Quote Link to comment Share on other sites More sharing options...
displace Posted August 2, 2017 Share Posted August 2, 2017 I've had chronically low Vit D for nearly a decade, and been on Methimazole for that time to treat graves as well. Not ONCE has anyone mentioned a link between the two. I'm floored to know there is an actual cause for why my body cant seem to produce Vit D in any amount. OP - I urge you to try meds first before burning out your thyroid with Iodine. Most american doctors are radiation and surgery happy, where most European ones lean towards meds. I've been on Methimazole for nearly 10 years now with no side effects. My dose has dropped dramatically over that time, and I'm now at such a low dose that it's considered "maintenance" Vitamin D deficiency is so common that most people have it, with or without thyroid problems. It's still preferable to treat he thyroid anyway even if the result is low vit D. I assume they're treating you for it and following it. Quote Link to comment Share on other sites More sharing options...
Χά�ων Posted August 2, 2017 Author Share Posted August 2, 2017 The nurse was incorrect. It is hypothyroidism. Starting medication. 4 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted August 2, 2017 Share Posted August 2, 2017 Did they run the antibodies test on you as well? I mention this because if you have autoimmune antibodies, the treatment is slightly more aggressive for a few reasons. Most importantly, you'll feel a heck of a lot better when you can keep your TSH closer to 1.0 because the autoimmune stuff will simmer down a bit. I found this website helpful: https://stopthethyroidmadness.com 1 Quote Link to comment Share on other sites More sharing options...
displace Posted August 2, 2017 Share Posted August 2, 2017 The nurse was incorrect. It is hypothyroidism. Starting medication. Hypothyroidism is usually easier to treat, so yeah! Quote Link to comment Share on other sites More sharing options...
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