# Just diagnosed with Graves'



## roxy123 (Jun 15, 2011)

Hello everyone, I was diagnosed yesterday with Graves Disease. I am on Atenolol and will get RAI next week to kill the thyroid. Once your hyperthyroid is treated did anyone still have problems from having Graves disease? I am really worried because I have been feeling terrible with my symptoms.
Thanks in advance 
:sad0049:glow


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## AZgirl (Nov 11, 2010)

I am one who is against RAI... some people have great luck having RAI but doing so, does not get rid of the TSI, or disease inside you. Some people, not all, willl have antibodies attacking another part of your body,, eyes, skin, heart.. so forth. I am all for having to take meds to control my thyroid. Of course there are side effects with meds too, but at least i have a chance (small but none the less) of remission. Did your doc ever even suggest your other options to you? most of them jump quickly to RAI,


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## webster2 (May 19, 2011)

Mine suggested it, but I am standing firm for surgery.


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## AZgirl (Nov 11, 2010)

Just wondering, why did you choose surgery? not that its wrong, i just want to know how you desided on that? Is everyone just have gut feelings? My gut was to try meds. And honestly, It was a vary hard beginging..thought i made a bad choice. only to find out my doc over dosed me! now i am on the losest dose, and doing awesome. I feel completely normal. Alll my labs are all in range and have been. If they continue, they want to discontinue my meds in nov. this year. (although, i am going to fight it, i want to continue for a few years) The meds are what kills the disease inside us, and i want to be sure i get a good dose of it to achieve remission. Im not familiar with surgery, i never really wanted to do it or RAI, especially RAI, but what im wondering is the medicine i take lowers your TSI or Trabs. this is the indicater of graves. It should be at zero. that is a normal persons number. This is why with RAI, some people develope TED. the disease is still in them. Do you know about TSIs after surgery? ps. i wish you lots of luck in your surgery, and a quick recovery :hugs:


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## webster2 (May 19, 2011)

Surgery for me, seemed to be the best fit with my mind. RAI has such strict guidelines for 30 days after, and it doesn't always work the first time, or 2, in some cases. I'd have half of the thyroid out already, and know what the surgery entails. Plus, mine is looking more and more like cancer. The pathology can be done after surgery. My .02...best wishes choosing your treatment. Whatever we pick, it is a life long pal.


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## webster2 (May 19, 2011)

AZgirl said:


> Just wondering, why did you choose surgery? not that its wrong, i just want to know how you desided on that? Is everyone just have gut feelings? My gut was to try meds. And honestly, It was a vary hard beginging..thought i made a bad choice. only to find out my doc over dosed me! now i am on the losest dose, and doing awesome. I feel completely normal. Alll my labs are all in range and have been. If they continue, they want to discontinue my meds in nov. this year. (although, i am going to fight it, i want to continue for a few years) The meds are what kills the disease inside us, and i want to be sure i get a good dose of it to achieve remission. Im not familiar with surgery, i never really wanted to do it or RAI, especially RAI, but what im wondering is the medicine i take lowers your TSI or Trabs. this is the indicater of graves. It should be at zero. that is a normal persons number. This is why with RAI, some people develope TED. the disease is still in them. Do you know about TSIs after surgery? ps. i wish you lots of luck in your surgery, and a quick recovery :hugs:


I think it is great that you feel well with the medication. How did you find out that the meds kill the disease? I thought they masked the symptoms but the antibodies were still at work, and didn't disappear. I agree with you on the RAI. It is not for me. If the meds work as you say, and I didn't have a funny business lump, I think I would stay on the meds, and hope for a remission. I wish you continued good health and progress! Thanks for the well wishes. :hugs:


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## disneyfanforever (Jun 8, 2011)

I didn't know that the medications help get rid of Graves disease and RAI didn't. I thought Graves was a lifelong issue that the treatments both help but can't cure. I thought both treatments eliminated or controlled the production of the thyroid horomone. Is that not correct? I am scheduled for RAI in two weeks as I had a bad reaction to the meds.

AZgirl, I have not heard or read anything antibodies attacking other parts of the body after RAI but not with meds. Could you please tell me where you heard or read this as this greatly concerns me as I have to have the RAI?

Thanks for all of the information.


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## AZgirl (Nov 11, 2010)

Well Webster, I am on another message board with plenty people who reached remission. They all (remission people)had one thing in common. They upped their meds while taking a replacement, or addback if you may. The reason i believe its true, is because i test my TSI or Trab and when i was on 5mgs of MMI, it was 203 (should be well below 129, a normal person is 0) so 203 means the disease is pretty active. well, my endo decided to DROP my meds (i disagreed but did it) only to find out that 3 months later my TSI rose back up again to 340! disease is progressing. I now found a doc. out of state who strongly agrees with the block and replace therapy, who also put his mother in remission this way too, he is gradually going to eventually get me back to 15 mgs but adding Ft3 so i dont go "graves coma" again. my numbers are dropping! This process is done widely in europe with a much higher remission rate. A great read is a book "a practical guide Graves dissease" by Elaine Moore. She had RAI but now studies this disease and wishes she knew now what she did then. Having a cancer scare is a whole different process. And i thank my lucky stars i havnt needed to study that. Im so sorry for you that do have to deal with that on top of everything else. From what i understand, having RAI kills the thyroid,sometimes not enough, but does not kill the disease. Therefore, the antibodies can start attacting other body areas. heart, eyes, skin, but not always. Yes, the meds are not good for you either, but i feel, IMO that i would like to try for remission bfore making that choice because there are some folks out there that do. Honestly, i have never felt better since being diag. with graves . My ft3 and ft4 and TSH all within range. However, now i am grad. adding more MMI but getting replacement . i kinda explain to non graves people, im getting a sleeping pill along with speed. Docs dont like to do this becuase it is much more difficult to control labs (or should i say to much time they need to take out of their busy lifestyle) Each person though, really needs to learn what is best for them. NOT just because the doc tells them. I am going to be starting a new med too, called low dose naltrexone. there has been many studies on this. I only heard from other graves patients who are heading towards remission, that they thing its wonderful. Its called low dose naltrexone heres a little of what i read, but you can look up as well ~

Immune System Effects
Used as a low dose, Naltrexone is able to block the mu opiod receptor but does not affect the other opiod receptors. In blocking the mu opiod receptor, low dose Naltrexone re-establishes the normal balance between the mu and delta opiod receptors, which is necessary for immune competence. Naloxone has also been show to increase Th1 and decrease Th2 cytokine production, decrease IL-4 production, and increase IL-2 and interferon gamma levels. In many autoimmune diseases, for instance Graves' disease, low Th1 levels are related to the proliferation of autoreactive T lymphocytes and the ability to produce autoantibodies.

Read more at Suite101: Low Dose Naltrexone: The Use of LDN for MS, Crohn's, and Other Autoimmune Diseases | Suite101.com http://www.suite101.com/content/low-dose-naltrexone-a22838#ixzz1Qb2w7D65


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## AZgirl (Nov 11, 2010)

Let me clearify that... Meds do not always work for sure! I am just taking that chance before i go to the next level.. however so far it is working for me... as far as RAI, it is also a good choice as well (just not mine) RAI works great for many people, but it has been known that sometimes it doesnt work too (like meds) 1. you could have to have RAI again 2. sometimes people develope TED afterwards. There are pros and cons to all procedures. I am only following the one that i know for SURE that i have seen go in remission without RAI and Surgery. keep in mind, its not a huge percent, but im giving it a shot. PLEASE do not take my opinion to heart, you can discuss with others who had RAI and see how they feel, some are very happy and some wish they had never done it. As im sure with all things... ps. i was so allergic to the meds at first, way to high of mgs. but i took a benedryl with it for about 1 1/2 weeks to adjust and it worked. now i have no issues with it.


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## webster2 (May 19, 2011)

I am glad you are feeling well, and confident with your treatment plan. It is too bad you have to travel out of state for your doctor. I have requested the book you suggested, and can't wait to read it. I will look at the other link you suggested! Thanks!


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## AZgirl (Nov 11, 2010)

I would like to post a link, but please remember im not bashing people who chose RAI, but i read somethings that made me a little concerned taking that route. This does NOT apply to all but since some asked about disease staying inside you i found a little info here, but there is a lot of info out there. Main thing is, checking your Trabs and TSIs for the progression of the disease. please take note of #13 as to the disease "still" active after RAI and # 18 showing possible remission with ATD, with the link i am sending. I would love to add that my neighbor had RAI and other then she is hypo (to be expected) she seems to be very happy with her decision. But then i have a brother, getting ready for his 3rd dose of RAI, eyes bulging now after 1st RAI, and his doc will NOT give him a TSI or Trab test!!! 
http://www.medhelp.org/posts/Thyroi...e-any-of-these-reasons-valid-Help/show/314837


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## AZgirl (Nov 11, 2010)

That link i sent was just a conversation between a few people, so this is the kind of info you should pay attention to, and then research them.


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## roxy123 (Jun 15, 2011)

Hello Everyone! I chose RAI and had it done this past Friday. So far so good, I really do not feel any different than before RAI. I have been sucking on lemon drops since day one. I had a dose of 15. something MCi. This is day 3 and I will keep everyone posted. Thanks


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## Andros (Aug 26, 2009)

roxy123 said:


> Hello Everyone! I chose RAI and had it done this past Friday. So far so good, I really do not feel any different than before RAI. I have been sucking on lemon drops since day one. I had a dose of 15. something MCi. This is day 3 and I will keep everyone posted. Thanks


So good to hear from you! And you sure sound great!! I think you are happy you have done this.

Are you still on beta-blocker?


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