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 January 18, 2003 Report Share Posted January 18, 2003 -----BEGIN PGP SIGNED MESSAGE----- Hash: SHA1 Maggie Thorne wrote: > > 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. Hi Maggie, I missed the start of this but would comment. TSH is a measure of (a pituitary) hormone concentration, it can't be negative, it can be close enough to zero as makes no difference (which is pretty typical at diagnosis of Graves'). > He says I need to do RAI now. Existing eye disease, and high thyroid hormone levels are both bad indicators for RAI. A review paper " Controversies in RAI " in EJE 2002 discusses the papers and risks. It also discusses how antithyroid drugs may affect the course of later RAI, if that is how you ultimately choose to manage your Graves'. (I can e-mail you a PDF copy of " Controversies in RAI " if you'd like, but it is kind of committing you to do your own research, when I'd say get the best endo you can). You'll have noticed a distinct anti-RAI bias around here, however it is a free country and they'll support you whatever you choose. But DO make an informed choice. The average GP and even many endocrinologists are not well informed on the best treatment protocols for Graves'. Heck last time I was in the local endocrinology department they were making a big thing over a paper published in 1998, and I'm thinking shit these people are treating ME, and I read it two years ago, and they obviously read it this week. If you must have a thyroid problem, have it in Chicago, Edinburgh or Japan ;-) > They gave me betablockers Good. In the UK you would almost certainly have been prescribed ATD immediately, probably Carbimazole, because the average GP may not know to give PTU to people like you, but either are a good start. At those levels you could do worse than demand PTU TODAY, you would probably start feeling some benefit from PTU by the time you see the endocrinologist if you do. > and I will be seeing a new ecronologist next Wednesday. Why do you think my eyes will > get worse after RAI? Eyes get worse in one third of all patients receiving RAI without suppressive steroids. Worse is not necessarily bad, but worse isn't good all the same. Some things are known to increase the odds of bad outcome; Smoking Existing Eye Disease High thyroid levels Something are strongly suspected of causing a higher risk; certain thyroid antibodies low thyroid hormone level / high TSH (Not relevant in your case) > 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. Okay there are two variants of thyroid eye disease. Mild eye disease is caused by excess thyroid hormone, this causes the " Graves' stare " , and usually causes minimal bulging of the eyes. This is more a minor symptom of Graves' and rarely causes any problems. Infiltrative eye disease is caused by antibodies attacking the tissue behind the eye, this is the WORST aspect of Graves' disease according to those who suffer it, causing disfigurement, AND pain. An excellent online resource on the two types and causes is http://www.thyroidmanager.org/, although it is aimed at physicians, the chapter on eye disease is pretty accessible. Infiltrative eye disease is the one with the pictures not for the squeamish, and often requires eye surgery to relieve the pressure, pain, and preserve vision. Anyway in the US RAI is widely performed, in the UK, and Europe, it is definitely third choice for most patients after drugs, and surgery. Japan is big on antithyroid drugs, and they have done a lot of research looking at the best way to give antithyroid drugs. It sounds like you had a good response to the drugs in the past, which is a good indication that you may reach permanent remission on antithyroid drug therapy (something I've never shown any signs of doing, alas), so from what I've read so far I think you'd be foolish not to try antithyroid drugs again. Ruling out RAI completely could be a mistake, I've already had surgery, and so my only permanent option is likely to be RAI. However given the figures I've read I'll be waiting for real trouble on my antithyroid drugs before I opt to fry a vital organ. Anyway I hope this has lessened the confusion, and you now understand where people are coming from. I strongly suggest you ask for PTU ASAP!!!! And get the hormone levels down near normal, you'll feel a lot less stressed, and confused, once you are nearly euthyroid, and have some time to make a decision. Take good care, and stay mellow, Simon -----BEGIN PGP SIGNATURE----- Version: GnuPG v1.2.1 (GNU/Linux) Comment: Using GnuPG with Mozilla - http://enigmail.mozdev.org iD8DBQE+KT4GGFXfHI9FVgYRAh4PAJ43rzWQC48mIW1KCBgkbOJ8LdCd9wCgtHHV RTmHXsHY46oauz8Bgbz9oL0= =OdkQ -----END PGP SIGNATURE----- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2003 Report Share Posted January 18, 2003 -----BEGIN PGP SIGNED MESSAGE----- Hash: SHA1 Maggie Thorne wrote: > > 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. Hi Maggie, I missed the start of this but would comment. TSH is a measure of (a pituitary) hormone concentration, it can't be negative, it can be close enough to zero as makes no difference (which is pretty typical at diagnosis of Graves'). > He says I need to do RAI now. Existing eye disease, and high thyroid hormone levels are both bad indicators for RAI. A review paper " Controversies in RAI " in EJE 2002 discusses the papers and risks. It also discusses how antithyroid drugs may affect the course of later RAI, if that is how you ultimately choose to manage your Graves'. (I can e-mail you a PDF copy of " Controversies in RAI " if you'd like, but it is kind of committing you to do your own research, when I'd say get the best endo you can). You'll have noticed a distinct anti-RAI bias around here, however it is a free country and they'll support you whatever you choose. But DO make an informed choice. The average GP and even many endocrinologists are not well informed on the best treatment protocols for Graves'. Heck last time I was in the local endocrinology department they were making a big thing over a paper published in 1998, and I'm thinking shit these people are treating ME, and I read it two years ago, and they obviously read it this week. If you must have a thyroid problem, have it in Chicago, Edinburgh or Japan ;-) > They gave me betablockers Good. In the UK you would almost certainly have been prescribed ATD immediately, probably Carbimazole, because the average GP may not know to give PTU to people like you, but either are a good start. At those levels you could do worse than demand PTU TODAY, you would probably start feeling some benefit from PTU by the time you see the endocrinologist if you do. > and I will be seeing a new ecronologist next Wednesday. Why do you think my eyes will > get worse after RAI? Eyes get worse in one third of all patients receiving RAI without suppressive steroids. Worse is not necessarily bad, but worse isn't good all the same. Some things are known to increase the odds of bad outcome; Smoking Existing Eye Disease High thyroid levels Something are strongly suspected of causing a higher risk; certain thyroid antibodies low thyroid hormone level / high TSH (Not relevant in your case) > 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. Okay there are two variants of thyroid eye disease. Mild eye disease is caused by excess thyroid hormone, this causes the " Graves' stare " , and usually causes minimal bulging of the eyes. This is more a minor symptom of Graves' and rarely causes any problems. Infiltrative eye disease is caused by antibodies attacking the tissue behind the eye, this is the WORST aspect of Graves' disease according to those who suffer it, causing disfigurement, AND pain. An excellent online resource on the two types and causes is http://www.thyroidmanager.org/, although it is aimed at physicians, the chapter on eye disease is pretty accessible. Infiltrative eye disease is the one with the pictures not for the squeamish, and often requires eye surgery to relieve the pressure, pain, and preserve vision. Anyway in the US RAI is widely performed, in the UK, and Europe, it is definitely third choice for most patients after drugs, and surgery. Japan is big on antithyroid drugs, and they have done a lot of research looking at the best way to give antithyroid drugs. It sounds like you had a good response to the drugs in the past, which is a good indication that you may reach permanent remission on antithyroid drug therapy (something I've never shown any signs of doing, alas), so from what I've read so far I think you'd be foolish not to try antithyroid drugs again. Ruling out RAI completely could be a mistake, I've already had surgery, and so my only permanent option is likely to be RAI. However given the figures I've read I'll be waiting for real trouble on my antithyroid drugs before I opt to fry a vital organ. Anyway I hope this has lessened the confusion, and you now understand where people are coming from. I strongly suggest you ask for PTU ASAP!!!! And get the hormone levels down near normal, you'll feel a lot less stressed, and confused, once you are nearly euthyroid, and have some time to make a decision. Take good care, and stay mellow, Simon -----BEGIN PGP SIGNATURE----- Version: GnuPG v1.2.1 (GNU/Linux) Comment: Using GnuPG with Mozilla - http://enigmail.mozdev.org iD8DBQE+KT4GGFXfHI9FVgYRAh4PAJ43rzWQC48mIW1KCBgkbOJ8LdCd9wCgtHHV RTmHXsHY46oauz8Bgbz9oL0= =OdkQ -----END PGP SIGNATURE----- Quote Link to comment Share on other sites More sharing options...
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