[Oberon]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171114

72+ hours after RAI. I still feel fine. Had moments of hyper feeling but still on same dose of propranolol. The dog is home, but I am still limiting time.
I had a very severe flash of nausea last evening, but it went away. I thought the nausea was more of an immediate side effect.
No sore throat and I have had no salivary gland swelling so far. I guess thanks to the many hard candies. Finally a necessity to eat candy.

Oberon

[Oberon]

in reply to: Any input on RAI appreciated please / having it in a few days #1171267

Beach45,

Not sure if you read my posts, but I struggled with the decision myself. Gatorgirly’s story convinced me to go the RAI route. My endocrinologist and hematologist both told me to go with RAI. I did it on Tuesday and so far so good. I was so freaked out about intentionally killing my thyroid. The whole radioactive thing is kind of scary too. I am on day three of captivity in my house.

I received a much higher dose I believe because my uptake was not that great. My hope is that I did not make a mistake and will now have eye issues that have not been present so far. Sometimes I think I may have jumped too soon on this. I was diagnosed this month and treated already.

Good luck to you. I hope you stay in a nice hotel. The distance requirement they gave you seems extreme considering what the guidelines say. I miss my dog and my cats are not happy that I am dodging them. Thankfully they sleep 18 hours a day.

Ready to hit the gym soon when this is resolved.

Oberon

[Oberon]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171111

Thanks, Bobbi. I will be on the lookout for it. So far so good. I have been eating a lot of hard candies for my salivary glands. Does anyone know how long I need to keep that up?

[Oberon]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171109

Thanks everyone. I dropped the dog off at her boarding joint. Planned for two days. Thanks, gator girly. I then drove to the hospital for my RAI. It has been two hours. So far just weird feelings in my neck. Before taking the magic pill, I spoke with a different nuclear med doctor that told me what I have been reading here. I have the luxury of working at home this week so I will spare my co-workers the extra radiation. He said I should be good to be around people by Monday. I am getting some jolly ranchers for the saliva gland thing. Any other tips for the immediate aftermath?

I could not sleep last night thinking about intentionally killing my thyroid. At the dog park this morning I told myself to just get it over with.

I can’t wait to eat seafood again. I have three days to go.

I am a little panicky about the airport scene I will have in a few weeks. I live in Southern California so I should assume a major airport like mine has a detector. I just hope the guns are not drawn when I get surrounded. Hopefully I will make my flight. I plan to have the letter out and be waving it. Does anyone know if the radiation detectors will sound an audible alarm with a flashing red light or will this be something I will not know about initially and then have a man in a black suit tap me on the shoulder and say, “Come with me, ma’m.”?

I have a very old cat with a hyperthyroid so she will be my only creature comfort for the next few days. My thoughts are all over the place. Probably a little hyper now.

Thanks again for the support. I’ll keep everyone posted – good or bad.

[Oberon]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171104

Spoke with nuclear med doc again and even mentioned the guidelines I was referred to and he still says only 24 hours away from small children. I asked about pets and sleeping alone. He still says no extra steps needed. My Endo said the same thing. They give me the impression this is no big deal.

I go for RAI tomorrow if I have the courage. I believe I will get 20 mcu. Still a little apprehensive, but getting tired of not exercising to keep my heart rate down. I am not a candidate for methimazole due to WBC. I fly in 2 and 3/4 weeks. That should be fun. This will be my first rough encounter with the TSA.

If my symptoms are not severe, is it possible to wait this thing out? I mean will my symptoms get worse if I do nothing? I have been told by two doctors that my thyroid will eventually give out due to Graves anyway. Has anyone tried waiting it out? Is it possible to get another blood test and find your levels are improving?

Oberon

[Oberon]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171100

Thanks for the answers and link to the after treatment precautions article. It was very informative. I am very surprised by level of precautions considering what I heard from the nuclear med doc. I was really told just to stay home for the first day and then nothing else other than avoid holding babies or children with developing thyroids close to my neck.
I have already cancelled a business trip next week, but I have two trips scheduled in the next two months. What is going to happen at the airport? Has anyone had to deal with setting off radiation detectors? The article I read said I may set off detectors for 4 months. Really? Is that the higher dose or the hyperthyroid dose?
My trips are to see family. My best friend just had a baby and there are tons of kids around. How many weeks should I wait before I see them?

The plastic trash bag is also necessary?

Worried again. Every time I get settled on RAI, I get freaked out by something.

Oberon

[Oberon]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171096

Thanks Stephen E. Just back from the hematologist. He had the same news that my Endo did. My risk is greater due to my WBC being on the low end. He found some studies that reported that my auto-immune disorder may be lowering my WBC. That said, my risk is higher than most for the side effect with methimazole. Considering that the ATD is not a cure but a gamble that I may go into remission, I think I am headed for the cure of RAI. I have had several people and doctors so far (even the hematologist) recommend RAI. The thought of dealing with drug side effects and long term balancing of the meds hoping for remission does not sound appealing to me. My hope was that I could have been a candidate.
Everyone tells me synthroid is not that big of a deal. True? Has anyone had a hard time with that?

Oberon

[Oberon]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171093

Had my consult with nuclear medicine doc today. Leaning towards RAI again. He was very casual about the treatment. Instructions if i go that route are just no seafood until i take the treatment. He said that with the dose I would have I would not need any precautions after i returned home. Really? That is contrary to what I have read. My Endo also told me that. He also said that with Graves, patients often eventually go hypo because the thyroid burns out. Is that true? Surprised I had not heard that before. Ready to be active again so the thought of zapping the thyroid seems tempting. Is taking synthroid really that bad? What are people experiencing on it?

My symptoms that were eye related have subsided. Really only had that for a few hours. Tightness in the throat ebbs and flows.

Meeting hematologist tomorrow to find out if methimazole is an option for me.

What is a typical iodine-131 dose? I had 66 percent uptake with the scan.

Thanks for the help with the neuro-ophthalmologist help.

Oberon

[Oberon]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171082

So last night the symptoms seem to be worsening. Noticed a tightening in my throat. Still present today. Leaning towards RAI again if that will treat the goiter symptoms. What type of eye doctor is recommended before RAI? I am also noticing mild eye issues now too. I am trying to get a referral from my Endo. I am playing the front office game now. Passing messages and getting little progress.

[Oberon]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171079

Thanks again for the responses. I found out recently that I have a friend who went through this several years ago. She was so symptomatic that her Endo did not give her a choice. She had RAI and had no negative after effects other than eventually going hypo. She takes the pill daily.
Being blessed with few symptoms makes the decision harder. Is a second opinion in order? My primary care and endo both agree on this dx and treatment. I think my hematologist appointment will steer my decision. If I can handle methimazole, then that is the choice. By the way I have an older cat who has been on methimazole for years. She has responded well so maybe I will too.

I was on a low iodine diet before my scan. Does anyone know if the prep for RAI is as restrictive? I am from Baltimore so my diet is usually seafood heavy. I have stopped eating seafood until I decide on treatment.
Does the radioactive dose depend on levels or just weight of patient? Will I get a lower dose than someone with really high levels or the same?

[Oberon]

in reply to: New to Graves – struggling with decision – drugs or RAI #1171075

Thanks for the responses. I spent the weekend thinking of nothing else. I have gone back and forth several times. RAI appeals to me so that I can move on from this. The eye issue risk scares me. One question I have is – if you have no eye disorder symptoms before RAI, will they onset because of RAI. My symptoms are so minimal now. Do I wait and mess around with the meds and risk getting more symptomatic?
Does anyone know if symptoms get worse the longer one has Graves or is it possible is is the way my body reacts to this? Am I just kidding myself?

I see a hematologist on Friday to determine if my low white count will be an issue with meds. The risk there is scary too.
Has anyone out there tried the homeopathic route?

Thanks again. This site helps a great deal.

[Oberon]

in reply to: RAI Questions #1170421

New to this and struggling with my decision for treatment.

Gatorgirly,
Was the TED brought on by the RAI or did you have symptoms of that before? I have no eye issues now and do not want to bring them on with RAI.

Thoughts? By the way I found your post extremely helpful. Thanks.

Lisa

[Author]

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