[susandemarco]

in reply to: Living through Graves disease #1067090

Thank you Ski for all that information. My endo seems to be a little liberal when it comes to this. I guess she knows best. But I will go over it
with the raiologist.

Thanks again for all of your quick help and patience.

Susan

[susandemarco]

in reply to: Living through Graves disease #1067088

Hi Ski,
I am so sorry, but I am not that computer literate and I have no idea how to get into the private message you sent me. If you have a chance,
maybe you can give me instructions as to how to get it.

Thanks,
Susan

[susandemarco]

in reply to: Living through Graves disease #1067086

Hi,
I am going to have RAI on the 8th of January, and would like to know what precautions I have to take regarding my family. I live in a house with
my husband, elderly mother-in-law and her caregiver. Do I have to wear gloves around the house and when I cook? How long do I have to be in
different room that them. I also have eight grandchildren, who I babysit for very frequently. I was thinking , as far as my grandchildren, two weeks
should be enough.

My endo didn’t seem to think it was a problem for me to sleep in the same room as my husband. She said the only people I definitely cannot be around
are small children and pregnant woman for about three days.

I would like to hear what some of you guys did during this time.

Thanks,
Susan

[susandemarco]

in reply to: Hyper after RAI #1067166

Hi,
I am having RAI January 8, 2010, and am very nervous about this. I have had Graves disease for about twenty years. I took PTU on and off during
that time, with remission for about eight years in the very beginning, and then less of a remission each time. Now as soon as I go off the
medication I am right back where I started. That is why I have decided to have RAI.

I have been following some of the people that have had it whithin the last six months, and it seems that everyone has all the same things going on,
well maybe almost the same. I realize everyone is different. I hope my situation is the same as most of the others. I am so nervous, but if
is very comforting to be able to read about other people’s experiences.

Thanks again,
Susan

[susandemarco]

in reply to: RAI update #1067189

Hi,
Here I am again wanting the magic answer. Can someone explain to me if what you refer to as TSH is the antibodies. My last
blood work showed that my blood work for my thyroid was in the normal range, but my antibodies were high. I have been taking
PTU for the last few months and am on two 50mgs twice a day.

I am scheduled for RAI the first week of January, but I keep vascillating with whether to take it or just keep taking the PTU. At this
point I am feeling fine, accept in stressful situations. I know the ultimate decision is mine alone, and I think that is what is so
frightening to me. In all the years that I have had this disease, I never had an eye problem or any type of swelling of my feet or
face, or high blood pressure or anything like that. So I am afraid that if I take RAI, I would be opening up a can of worms and start
getting all these other symptons. I have spoken to a few people who have had taken it and they all are telling me to do it and
not to worry. By the way they both seem to be fine and they did take it at least fifteen years ago. In fact, one of them is my
urologist.

Again I would appreciated more information. You guys are so understanding, and are always there to answer.

I just want to tell that my doctor said that because my antibodies were high, if I go off PTU, I will go back to being hyper and will not go
into remission.

Thanks again,
Susan

[susandemarco]

in reply to: EYE QUESTION #1067146

Hi Ski,
Thank you for your reply, I really appreciate all of the facilitators information.

And once again, thank you for replying so quickly.

Susan

[susandemarco]

in reply to: EYE QUESTION #1067144

Hi Bobbi,
Thank you for your quick reply. I really do appreciate it.

About the eye involvement. Did you have any problems with your eyes after RAI. I am kind of concerned about it since in all the years that
I have had this disease I never had any problems with my eyes. Like I told you in my previous post my endo does not THINK I will have a
problem, but I am wondering if the RAI causes it, or if some people just get because of their Graves Disease.

If you have any information on this I would appreciate you informing me of this.

Thanks again for all your help.

Susan

[susandemarco]

in reply to: EYE QUESTION #1067142

Hi Bobbi,

I am scheduled to have RAI the beginning of January. I have had Graves Disease for the last twenty years, and was on PTU on and off. The first
time I went into remission for about eight years, and the second time for about four or five years, but since then everytime I went on the PTU,
my remissions were shorter and shorter. Now the last time I went off in about one month all the symptons returned and Graves was back.

I have been on PTU for the last several months at a dose of one pill of 50mg, but then started having symptons, and the blood work showed my
levels were high, and could feel that they were. My endo put me on two pills of 50mg each and it put my levels at normal range, but she said
the antibodies were high, and if I should go off the medications all my symptons would return. She recommended that I really should consider
RAI at this point because I have really given the medication a good chance, without good results.

All through the years I have not had any eye issues, and she measured my eyes and said she didn’t think I would after the RAI. However, I am
somewhat concerned after reading some of the posts on this message board.

My other concern is the weight issue. I had asked the doctor, and I also posted the question, and I think you answered me. My endo said, after you
are stablized with normal levels, and are put on synthroid, as long as you watch what you eat and exercise I should not have a problem maintaining
my weight. What about during the time that you are waiting to get to the hypo point, and the time during the process of getting the right dose
of synthroid, if you are careful with your diet will you still have to worry about gaining weight?

I realize that this sounds very vain, but I was always very consious of my weight.

Thank you for any information you can give me.

Susan

[susandemarco]

in reply to: Grave and Bulging eyes #1067271

Thank you Bobbi for your prompt and articulate response. I do feel more confident after reading your response.

Thanks Again and have a happy Thanksgiving.

Susan

[susandemarco]

in reply to: Grave and Bulging eyes #1067269

Hi Bobbi,
I am scheduled to have Rai in January. I am 63 years old and have been on and off PTU for the past twenty years. The first time I took it for
eighteen months and went into remission without any meds for eight years. The second time, the same thing, and went into remiss, without
meds, for three years. After that the remissions were a lot shorter without meds. Now is seems I am on the meds, but as soon as I go off,
I become hyper again. I went to see my endo on Wednesday and she thinks I gave it enough time and that I shoul take the radioactive iodine.
Part of me agrees, but I am so fearful of the side effects.

The first side side effect is the eye involvement. My endo does not seem to think there is a problem, as I have had this disease for so
long and my eyes seem fine, that she does not seem to think there will be a problem.

The other thing is the weight gain. She tells me that she will be monitering me, and once I become hypo, as long as I am careful about my
diet there should not be a problem.

I feel as though, as all of us do, that I have no control over my body. I feel with the PTU that there is some control, except with the WBC and the liver
damage.

It just seems that the posts I have read on this site, there are not to many that have happy endings.

Right now, I am very confused, and would appreciate any input.

Thanks,
Susan

[susandemarco]

in reply to: My choice of treatment and a question about it #1068060

Hi James,
I have been on and off PTU for the last twenty year. My first time I took it for eighteen months, and then went into remission for about
eight years. The second time, took for another eighteen months, then was in remission for about three years. Since then have been
on and off with each remission lasting a shorter and shorter time. The last time which was this year it only lasted about three months.

I am now taking two 50mgs a day until I see my endo next week. I am seriously considering doing the RAI next.

My question to you is if you take ATD’s all the time for maintenance.

Any input would be greatly appreciated.

Thanks,
Susan

[susandemarco]

in reply to: ANGRY but finally started therapy yesterday #1067741

Hi bprotel,
I am currently considering RAI, an wondering about the weigh gain. Did you gain a lot of weight after the RAI, while you were waiting
to go hypo, and if you did, once your meds were regulated, was it easy to get back to your normal weight. I hear so many stories about
weight gain and how uncontrolable it is, it really frightens me. I feel that I will never have control over my body once I take that
RAI.

I know it could be alot worse, but this disease is very nerve wracking.

If you have any input, I would appreciate any information you could share.

Thanks,
Susan

[susandemarco]

in reply to: definative tests for Graves’ ? #1067609

This post is for Nancy Patterson:
Hi Nancy,
I have been reading posts from the archives, and many of the people have mentioned a book written
by you and Jake.

I would appreciate you letting me know the title and how I could purchase it.

Thank you,
Susan De Marco

[susandemarco]

in reply to: Effects of RAI #1067702

Hi Stacy,
Thank you for responding so quickly. My other fear is the possible weight gain after you are hypo.

The thing I am trying to find out, is after you get regulated with the synthroid can you manage your weight. According to my doctor
she said yes, especially since I was regulated when I went into remission. But you hear so many horror stories it really scares me.

If there is anyone out there who had RAI and was able to keep their weight at a normal stable range, I would appreciate your story.

Thanks again,
Susan

[susandemarco]

in reply to: Effects of RAI #1067697

Hi Lucy,
I was diagnosed with Graves Disease twenty years ago. I immediately went on anti-thyroid drugs, PTU, for about eighteen months. I went
into remission for about eight years, then went hyper again, and started the medication again for eighteen months. Again went into remission,
but this time only for three years. And it went on like that and each time remission was a little shorter. At this point remission only lasts for
about a month or two. Right now I am seriously considering RAI, which I will probably do after the holidays.

This is a very personal and confusing decision, but I would try the medication and see what happens. You can always make the decision to do
the RAI.

I hope this info helped you out a little.

Best of luck and good health,
Susan

[Author]

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