[Ski]

#1070815

Remember too ~ if you have difficulty finding stable, normal levels with meds, thyroid surgery is another option for you. It’s perfectly valid, I know many happy thyroidectomy patients. While you continue on Tapazole, I would say that it’s still a good idea to continue your research, even after you’ve begun on the med path. It’s possible you may never have to make another choice, but it’s always good to have the information behind you.

Also ~ there are many sites that will pass along false information about RAI. I’m not sure why this particular treatment has drawn so very much bad press, but make sure you are getting information that has been proven successfully in peer-reviewed scientific studies. Thyroid cancer patients receive RAI doses up to 20 times what we receive, and even then it is not considered a significant risk in terms of the radiation exposure. It’s been used as a treatment for more than 60 years, without any significant increases in other conditions.

RAI has been shown, in one study, to potentially aggravate eye symptoms, so that’s something to consider carefully. Once again ~ thyroidectomy would be the way to get the same result as RAI, without that potential effect, just in case destruction is what you’d like to pursue at any point.

Check the ATA site (link on the main page) for an endo near you ~ and remember, sometimes there are internal med doctors who know just as much about thyroid disorders. Once you’ve found potential doctors, give the offices a call and "feel them out" before spending your time to go down there and visit. The office staff and nursing staff can give you a LOT of good information before you decide whether or not to see the doctor.

[sickofgraves]

#1070816

Just an update…I had an appt. withe the Radiologist and although he thought me to be a good candidate for RAI, he supported my desire to see if I could try to put my GD back into remission and so I am on 10mg Tapozole twice a day for a month and then another blood test and then an adjustment if needed, etc. etc.

I am still on beta blockers for awhile and I am more careful about what I am eating. Trying to eat the right amount of iodine in my daily diet and cutting down dramatically on unhealthy foods and alcohol and caffeine. I quit having the bad symptoms a couple weeks ago, probably courtesy of the beta blockers, but i sure don’t miss them!!!!!! I have started to gain a little weight, but at this point, that’s a good thing. I really appreciate this website and most certainly will contribute.

[bradybunch6x1]

#1070817

I had RAI, of course I look back on it now, and think to myself I should of given myself the chance to go into remission. I was hyper for over a year before the RAI actually worked causing me to go hypo. The hypo part of this was pretty bad, I had problems remembering how to spell my own name, but at that point it was because I was way to hypo. I had a hard time remembering to go to the doc, and to even take my meds. It was bad. Then after getting the thyroid back into check, I was feeling pretty good. I still had problems off and on for awhile, until I found the right meds for me. I can say that the TED has gotten pretty bad in my case, as well as it affecting my skin on my legs. It’s pretty nasty looking honestly. I have found that in my case, since it doesn’t seem to have a thyroid to attack it likes everything else so to speak. I am only 35(for a few more months anyway), so that doesn’t help, when your looking at the age factor. You might want to weigh the good against the bad with the cancer thing, do you have a family history of this type of issue? Do you have a really good doctor to care for you post RAI? I ask this because if the doctor doesn’t know what to look for then how do you know if you should even do it? Have you thought about the fact that either way you will be on meds? Why RAI really if it tends to send you one way or the other anyway? These are questions I would be asking myself if had this option again. The fact is that with the Anti thyroid drugs you might have another chance at not having to take meds, with RAI it will be a for sure thing. I also want to say that hypo is not at all what is cracked up to be. I honestly think that I felt better when I was hyperthroid. There is my opionion and thoughts on the issue. Good luck in any choice that you make,
Valarie

[sickofgraves]

#1070818

Hi Valerie and thanks for the great letter. I live in a small rural California town, and my small town doctor is now treating my thyroid. So, I really don’t have a specialist (the nearest Endo is about 3 hours from me), and maybe all the waiting I did to have my planned RAI gave me the opportunity to really research all the options, which lead me to my decison to not get RAI.

Since I was before on Tapozole and it did put my GD into an 8 year remission, maybe the second go around I’ll be more careful with what I eat and drink and watch myself a little mpore closely. I am feeling better now…more balanced and not so many of the stressful symptoms. I have got to agree with you when you write about hyer maybe being easier to deal with than hypo. When I was hypo, I was such a slug. Now I am trying to balance it all out. I am active and I eat like a horse, and if hypo I would probably weigh 100 pounds more than I do.

I really couldn’t have done it without E-mails from a certain wonderful person who helped me along the way. She’s the one who ponted out the NGDF to me. Anyway, whatever choice we choose in this, we have to deal with the comes what may of it all. I am 52 by the way, but have probably been hyper for 20 years. Take care and thanks again!!

[susandemarco]

#1070819

Hi,
I am 62 years of age and was diagnosed with GD twenty years age. My dr. at the time put me on PTU for a year and a half and I went into
remission for about seven years. Since then I have been in and out of remission with the use of PTU. About three months ago my GD
returned and my endo recommended RAI,but I opted to go back onto a low dose of PTU everyday. Currently I feel fine taking this dose and
if I can will continue.

I feel the same as most people in that it is a very hard decision, but for now I will continue with the low dose PtU.

bEST OF lUCK,
sUSAN

[sickofgraves]

#1070820

Hi Susan, I am with you! It’s been almost a month back on Tapazole and I am feeling better already. It’ll be a long haul again, but I would rather do this than RAI for now. XO

[susandemarco]

#1070821

I have the same feeling about RAI. One minute I think I will do it then I read something and change my mind. I have been on
and off PTU for the last 20 years since first being diagnosed. Currently I am on a low dose.

I am trying do find some people who have taken the RAI that I could talk to who have positive results and who have not gained alot
weight.

Thanks,
Sue

[Ski]

#1070822

There was a post not too long ago asking this very same question. Search for "RAI positive results" and it’ll probably pop up. Lots of people replied with positive results.

It’s STILL your decision! Whatever results other people have had, unfortunately you cannot always say that your results will mirror those. That advice goes for ANY of the GD treatments. Each of us is an individual, and with Graves’ it seems even more pronounced that people have wildly varying results from the very same treatments. It’s all about what YOU feel comfortable with, what YOU want.

[susandemarco]

#1070823

Hi Ski,
You mentioned that you had RAI. How long ago did you have it and have you gained a lot of weight since. Also is it much harder
to maintain the weight that you feel comfortable at.

I am sorry if I am sounding vein, but even at my age I really would not like gaining twenty or thirty pounds, as it is not healthy either.

Thanks again,
Susan

[Ski]

#1070824

I had RAI in 2001, and no I have not gained a lot of weight. I’ve been overweight since I was in 3rd grade, but going through RAI did not add any appreciable amount to my weight. I don’t have a tough time managing my weight, I don’t have to starve, or exercise twelve times a day. I am just now beginning a new exercise program (not one of my favorite things, probably high on the list for my lifelong weight issues), and things are progressing as one would expect. As I do better with my intake and exercise, the weight is coming down, the muscles are becoming stronger, and my clothes all fit better. My motivation can be low sometimes, but that’s on ME, not my disease or my treatment choice.

I think one of the issues patients continue to have is that they do not understand thyroid hormone levels. They look to their doctor for all input on their disease, treatment and recovery, and the doctor does NOT care as much as we do about finding OUR normal point within the range of normal thyroid hormone levels. They see lab tests that read "normal" and they close the book. It is rather horrifying how many patients just take that, even after they feel badly for years and years afterward, then they choose to blame the initial treatment rather than their continuing care, because they don’t know any better, don’t do research, don’t learn anything about what their own body is doing. (By the way, those people are not here ~ everyone reading here is doing far more than those of whom I speak, and they all have a better chance of feeling well long-term.)

Remember that weight issues can be managed, we can always exercise a little more, eat a little less, when we are HEALTHY. Thyroid issues are secret killers, and they sabotage our weight control, so we must manage our thyroid levels very carefully in order to protect ourselves and minimize weight issues.

[susandemarco]

#1070825

Thank you for your input. I appreciate you sharing your experience with me, as sometimes I feel so confused and helpless.
Hearing your story at least gives me some hope that maybe I do have some control over this disease.

Thanks again,
Susan

[susandemarco]

#1070826

Hi,
I am pretty new at using the computer, and in one of your answers Ski you mentioned a web sit
RAI positive results, could you please explain to me where I type it in.

Thanks Again,
Sue

[Ski]

#1070827

I was suggesting you search our site ~ from the Index level, you can search the BB for any text strings or groups of words. Our search engine should be able to get you some relevant posts.

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