Guest guest Posted October 4, 2003 Report Share Posted October 4, 2003 Hi , Sorry you are feeling so bad. Your doc did you a favor by asking YOU to wait 2 weeks to take RAI! Did he also tell you that you have options other than RAI? You should not do it, especially since you have eye signs already. Please look at my pics before and after RAI in the link below. From there, you can link to my story at Mediboard which has some good info for you. While you are at Mediboard, check out the thread called THYROID AWARENESS 101.....a great collection of vital info for newbies. God bless, <A HREF= " http://hometown.aol.com/lisareynolds64/myhomepage/personal.html " >http://ho\ metown.aol.com/lisareynolds64/myhomepage/personal.html</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2003 Report Share Posted October 4, 2003 Hi , And welcome. I am running out for the rest of the weekend right now, but want to let you know this list is pretty dead on the weekends. We will all be back first of the week. To get you started, here is our favorite link. http://www.suite101.com/articles.cfm/9630/21-40 More than enough to start with. See ya later. -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 October 5, 2003 Report Share Posted October 5, 2003 , Welcome to the group. You have come to the right place. I was diagnosed a year ago, in september. They had missed it many times. So, I understand the anger. Right now, I'm not very trusting of any doctors. I was put on ATds. and I am now doing much better. It will take a lot of lifestyle chages, and a lot of support. For you to get through all of this. I understand about the insurance thing. I'm currently on medicaid. Which is being cut like crazy. I'm also blind, and have been this way since early childhood. So, I don't drive. Well, I have to fight to get transportation payed for by medicaid, to get to my doctor's appointments. This doesn't help with the anger either. But you are going to have to find away to control that, because it might exacerbate your symptoms. Finally, This group is one of the many steps, to your living with this disease. Take care. R. Green A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words. ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2003 Report Share Posted October 5, 2003 Hi . Welcome to the list and welcome to America (though some welcome so far, huh ;-) The only post I've read in response to yours so far is from Reynolds, which really says it all. If for no other reason than that you already show signs of TED (thyroid eye disease), you should not have RAI. Even many endos (endocrinologists) who are pro-RAI will try ATDs (antithyroid drugs) for people who have signs of TED. In fact, ATDs can be of great help in treating TED. The blood test showed a T4 > reading of 76. Something you're going to have do is get clarity of the terms involved. The best way to go about doing this is to get a binder (which you'll need for copies of all your bloodwork, which you must insist on getting), highlighter, pen, paper, and make sure you have ink in your printer if you have one. There is a lot for you to learn, and I'll try to organize things a bit for you. 1. YOUR TREATMENT OPTIONS They are RAI, surgery, and ATDs. This group has had the best experience with ATDs. They are the least invasive, not permanent, will not leave you with lifelong hypothyroidism (which many endos do not care enough about their patients to treat properly either), will not exacerbate preexisting TED, and many more benefits. There is a link to the homepage to an annotated list of 20+ reasons not to have RAI. In your case, they're cost effective too. You will not have to quarantine yourself for a week minimum (more is probably better) and miss work, and other than the initial bloodwork and testing layout in the best case scenario will only mean paying for ATDs and minimal bloodwork. Pam L. detailed how she managed her treatment without insurance. I'll try to make the same points but it's worth looking up or asking for. (Pam's really busy but if you put Pam L. - no insurance in the subject line she'll likely get back to you soon.) (BTW, we've had members with great success on alternative treatment but it's not a do-it-yourself type thing and will be more expensive.) 2. APPROPRIATE TESTS for diagnosis and treatment: Diagnosis will require an initial layout, unfortunately. What you'll need are TSH FREE T4 and FREE T3, and I'm afraid you had the total T4 which is not an accurate indicator of how much thyroid hormone you have circulating White blood count and liver enzyme function tests Antibody testing - the TSI and if possible, TPO as well After the first month on antithyroid drugs: Blood count and liver function again. If these are off, they are indicative of a possible serious response. BUT, GD itself can cause irregularities so you must have the bloodwork done BEFORE starting ATDs as a comparison. You will not be in danger if your numbers are off per se; it depends on your symptoms and how high (or low) they are. Regular testing till you're ready to go off the ATDs: Every 4 to 8 weeks you should have regular testing. You may be able to get away with just the FREE T4 which isn't terribly expensive. It's possible you'll need an occasional FT3, especially if the initial testing shows that the T3 isn't acting in concert with the T4 (if you're hyper they'll both be elevated). The TSH is irrelevant because studies have showed that it stays suppressed long into treatment. (I think this study may be linked to the homepage. If it is it's worth printing.) Before stopping ATDs you should have the TSI antibody test again! I'm going to send something I wrote about ATDs that I hope will clarify things for you further. Take care, Fay ________________________________________________________________ The best thing to hit the internet in years - Juno SpeedBand! Surf the web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
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