Guest guest Posted December 22, 2002 Report Share Posted December 22, 2002 Hi Maggie, Welcome to the group. I can't believe how badly your care has been mismanaged so far! Please don't give up and have RAI at this point, it would be a dire mistake for you. Why? Because first of all, it will make your eye problems worse as it doesn't address the underlying cause of the eye disease. Second, you are not being controlled by drugs now, and therefore, if your levels are high when you undergo RAI you risk thyroid storm as the thyroid dumps hormone. And third, if you are managed properly by an informed doctor, and take the time as well to learn all you can about the disease, you will find it's entirely possible to get a good treatment outcome without RAI. I don't have eye disease, so can't honestly address that aspect of things, but your reaction to the drugs by going up and down on the scale--can you be more detailed about what you were taking, and what your labs during that time were? We may be able to help a bit if we have more info. Certainly your current course of action is not going to help you get better! You need to have your blood levels monitored, you need to be on medication so your GD doesn't spin out of control. Were you on MMI or PTU? What dose were you on? How closely were you monitored? Lots of exploration necessary here. Do spend a bit of time at the home page in the files section, look at the symptom list, the letter to the newly diagnosed (which I know isn't you, but nevertheless it's a helpful letter), and the top 20 reasons not to have RAI, which are well documented and should address some of the reasons you should not proceed with that course of action. It's a funny week, some of us are here, some not. Be patient, and I'm sure you'll get plenty of responses besides mine, especially from others with eye involvement. Terry > > Reply-To: graves_support > Date: Sun, 22 Dec 2002 16:41:25 -0800 > To: graves_support > > Subject: Re: Happy Holidays > > Hello group! I am new here, just signed on a week ago and have been trying to > read all the messages. Since there are so many, I decided to just jump in and > say hello. I am hoping to find someone or many who share my situation. > > I was diagnosed in 2000 with hyperthyroidism at the age of 50. I started > taking drugs and having routine blood tests, but then my right eye started > bulging. Each month my test results would go up and down the scale. After > two years of drugs and no improvement, my doctor wanted to do radioactive > iodine. I told her I needed to think about it. I've been thinking for almost > 8 months and have not come to any decision. I stopped going to the doctors, > stopped the meds and decided to just go on with my normal life. I do see an > opthalmologist who has been watching my eye for over a year. He says my > condition is very mild and has suggested doing steriods in January. Has > anyone had steriods and has it helped? > > I am concerned that I might have to surrender to the radioactive iodine > treatement because lately I have been having lots of heart palpatations - > especially at night - my heart beats so fast and so loud I find it hard to > sleep. So I am thinking the treatment is my only choice. Is it? > > Look forward to hearing from anyone who is more educated than I am on this > subject. > > Thanks for listening and everyone, do have a Merry Christmas. > > Maggie > Happy Holidays > > > > > To all, > > Best wishes for a happy holiday and healthy New year. With warm regards, > Zoey > > http://holidays.blastcomm.com/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2002 Report Share Posted December 23, 2002 Terry: Thanks for responding so quickly. I will check out those areas you pointed out. I don't have all of my medical history. When I was first diagnosed I didn't think to keep track because I heard this was a disease that runs in the family and no one had it in mine, so I thought it wasn't going to last. Here's my test results from start to finish that I did save, monthly test. During this time my doctor changed my dosage of 10 mg of Tapazole from 2 to 3 times a day depending on test results. 05/21/2001 - TSH <0.01, T3 Free 12.2, Free T4. 3.5 06/18/2001 - T3 Free 2.9, Free T4 0.9 07/19/2001 - Free T4 4.6, T3 16.1 08/14/2001 - TSH <0.01, T3 Free 3.1, Free T4 0.9 09/15/2001 - TSH <0.01, Free T4 1.5 10/30/2001 - TSH - .02, T3, Free 3.2, Free T4 1.2 02/06/2002 - T3 Free 2.1, Free T4 <0.4 02/27/2002 - TSH 0.03, T3 Free 7.2, Free T4 2.2 06/21/2002 - TSH <0.01, Free T4 2.0 My T3 & T4 were either normal or high, but my TSH was always low. My doctor, who I didn't really like but due to the lack of doctors in this field, said the TSH was what I needed. I was on the medication from Jan 2001 through May of 2002. My right eye started after I began the medication. I know I need to seek some medical attention, but as I mentioned, my home town lacks any with expertise. I'm going to check out the site now as you recommended. Thanks for listening. Merry Christmas - Maggie Happy Holidays > > > > > To all, > > Best wishes for a happy holiday and healthy New year. With warm regards, > Zoey > > http://holidays.blastcomm.com/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 Hi Terry: I've been having some terrific heart palpitations which keep me from sleeping very well. I went to my regular doctor and they took my blood. Results were very high T3 over 400 and TSH in the negative. He says I need to do RAI now. They gave me betablockers and I will be seeing a new ecronologist next Wednesday. Why do you think my eyes will get worse after RAI? Isn't the hyperthyroidism what caused my eyes to bulge in the first place and wouldn't getting rid of the hyper a way to stop the eyes from getting worse? I am so confused. Maggie Happy Holidays > > > > > To all, > > Best wishes for a happy holiday and healthy New year. With warm regards, > Zoey > > http://holidays.blastcomm.com/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 Maggie, Since you were off the drugs and did not get bad for eight months, this tells us you were very close to possibly being in remission, where you are no longer needing to be on the drugs. BUT, since you were not tested for the correct antibodies to judge exactly when to stop the drugs, and since you were not properly weaned from the drugs, but did so against medical advice and on your own, it is not surprising you are now hyper again. Darn shame you went through all that and were so very close. If you would have had a good doctor we would not be having this conversation now. This nightmare would probably be all over. RAI ( radioactive iodine ) is proven to often make the eyes much worse, and not only cause life long disfigurement, they hurt badly and your vision may become permently double. If this happens, it requires many surgeries, which may or may not fix the double vision. I am very sorry you did not have a doctor that knew how to properly use the drugs back when you were on them. This is why you went up and down. And that makes you feel sick all the time. When the drugs are used the right way, you are not sick. You are just getting labs, changing your dose as you heal, and taking your pills at proper intervals during each day. You should not be sick. BUT...here is the problem now. Since you have proven you are a non compliant patient, by stopping the drugs and not pretending everything is fine, the doctors now have a hard time trusting you. They will be afraid you will do the same thing again, and the next time you may not be so lucky. You might stop them at a worse point, and end up killing yourself. Yes, this is a possibility, rare but real. So the doctors are now rightfully afraid of a law suit. So you have choices only you can make. You can do the RAI and pray the eyes don't get worse. BIG risk ! Then you can pray you find a good doctor to prescribe replacement hormone, and the right kinds and amounts at the right times. It is NOT as simple as one little pill a day, and if they have told you that it is a lie. Or, you can find a good doctor, and plead for the chance to do this right this time. get started on the drugs again, and learn more about the right way to do it. Since you now see the error in your ways, the new doctor might give you a chance. You have learned a very hard lesson. No point in doing it though if you are going to mess it up again. If you choose to try the drugs again, there are many of us here that have used the drugs, and we can help you. Though you have to be willing to help yourself too. -Pam L - 3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU (despite an incompetent endo ! ), improved lifestyle, excellent nutrition, herbs, and looking at the big picture. Pills alone only help the symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 Maggie, Since you were off the drugs and did not get bad for eight months, this tells us you were very close to possibly being in remission, where you are no longer needing to be on the drugs. BUT, since you were not tested for the correct antibodies to judge exactly when to stop the drugs, and since you were not properly weaned from the drugs, but did so against medical advice and on your own, it is not surprising you are now hyper again. Darn shame you went through all that and were so very close. If you would have had a good doctor we would not be having this conversation now. This nightmare would probably be all over. RAI ( radioactive iodine ) is proven to often make the eyes much worse, and not only cause life long disfigurement, they hurt badly and your vision may become permently double. If this happens, it requires many surgeries, which may or may not fix the double vision. I am very sorry you did not have a doctor that knew how to properly use the drugs back when you were on them. This is why you went up and down. And that makes you feel sick all the time. When the drugs are used the right way, you are not sick. You are just getting labs, changing your dose as you heal, and taking your pills at proper intervals during each day. You should not be sick. BUT...here is the problem now. Since you have proven you are a non compliant patient, by stopping the drugs and not pretending everything is fine, the doctors now have a hard time trusting you. They will be afraid you will do the same thing again, and the next time you may not be so lucky. You might stop them at a worse point, and end up killing yourself. Yes, this is a possibility, rare but real. So the doctors are now rightfully afraid of a law suit. So you have choices only you can make. You can do the RAI and pray the eyes don't get worse. BIG risk ! Then you can pray you find a good doctor to prescribe replacement hormone, and the right kinds and amounts at the right times. It is NOT as simple as one little pill a day, and if they have told you that it is a lie. Or, you can find a good doctor, and plead for the chance to do this right this time. get started on the drugs again, and learn more about the right way to do it. Since you now see the error in your ways, the new doctor might give you a chance. You have learned a very hard lesson. No point in doing it though if you are going to mess it up again. If you choose to try the drugs again, there are many of us here that have used the drugs, and we can help you. Though you have to be willing to help yourself too. -Pam L - 3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU (despite an incompetent endo ! ), improved lifestyle, excellent nutrition, herbs, and looking at the big picture. Pills alone only help the symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2003 Report Share Posted January 17, 2003 Maggie, Since you were off the drugs and did not get bad for eight months, this tells us you were very close to possibly being in remission, where you are no longer needing to be on the drugs. BUT, since you were not tested for the correct antibodies to judge exactly when to stop the drugs, and since you were not properly weaned from the drugs, but did so against medical advice and on your own, it is not surprising you are now hyper again. Darn shame you went through all that and were so very close. If you would have had a good doctor we would not be having this conversation now. This nightmare would probably be all over. RAI ( radioactive iodine ) is proven to often make the eyes much worse, and not only cause life long disfigurement, they hurt badly and your vision may become permently double. If this happens, it requires many surgeries, which may or may not fix the double vision. I am very sorry you did not have a doctor that knew how to properly use the drugs back when you were on them. This is why you went up and down. And that makes you feel sick all the time. When the drugs are used the right way, you are not sick. You are just getting labs, changing your dose as you heal, and taking your pills at proper intervals during each day. You should not be sick. BUT...here is the problem now. Since you have proven you are a non compliant patient, by stopping the drugs and not pretending everything is fine, the doctors now have a hard time trusting you. They will be afraid you will do the same thing again, and the next time you may not be so lucky. You might stop them at a worse point, and end up killing yourself. Yes, this is a possibility, rare but real. So the doctors are now rightfully afraid of a law suit. So you have choices only you can make. You can do the RAI and pray the eyes don't get worse. BIG risk ! Then you can pray you find a good doctor to prescribe replacement hormone, and the right kinds and amounts at the right times. It is NOT as simple as one little pill a day, and if they have told you that it is a lie. Or, you can find a good doctor, and plead for the chance to do this right this time. get started on the drugs again, and learn more about the right way to do it. Since you now see the error in your ways, the new doctor might give you a chance. You have learned a very hard lesson. No point in doing it though if you are going to mess it up again. If you choose to try the drugs again, there are many of us here that have used the drugs, and we can help you. Though you have to be willing to help yourself too. -Pam L - 3 1/2 years Graves', TED, and PTU. Remission due to SLOW reduction of PTU (despite an incompetent endo ! ), improved lifestyle, excellent nutrition, herbs, and looking at the big picture. Pills alone only help the symptoms. We must help our bodies to heal. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Dear Maggie, Family doctors are great for general medical problems, but you really need the treatment and guidance of a gastroenterology specialist as soon as possible. It's good that your family doctor will do bloodtests and admit you, but you need more specialized treatment than he is able to give you. The pancreas is an organ that few general practioners know very much about, and even the gastroenterology specialists are often perplexed by it's complexities. I cannot emphasize enough the need for you to see a specialist as soon as you can, not months from now. A specialist could find out what caused your chronic pancreatitis, and also recommend treatment for your condition, such as the pancreatic enzymes, vitamins, antioxidants and necessary pain medications to ease your pain. He or she can do tests and imaging studies to determine if there may be some surgical procedures that need to be performed to help reduce the pain. Sometimes there are duct obstructions, or other reasons, such as pancreas divisum, or sphincter of oddi dysfunction that cause your pancreatitis difficulties. There are two doctors and one pain managment specialist in our files. They are from Lexington and Louisville, I believe. Would that be anywhere close to where you live? If you click on " Files " on the left of your screen, and then click on " Pancreas Knowledgable Doctors " , you can locate them. Please let us know if you have any more questions. With hope and prayers, Heidi Heidi H. Griffeth South Carolina Southeastern Representative PAI, Intl. Note: All comments or advice are personal opinion only, and should not be substituted for professional medical consultation. >>i am from kentucky, i see a stomach doctor the 12 next month i also have reflex, i do see my family doctor he puts me in the hospital when it acts up, puts iv and does blood tests. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.