[mwhitney]

in reply to: Surgery vs. Iodine #1180000

My whole graves experience was rather quick.
I hit a wall with methimazole after 5 weeks. I didn’t have enough to to research surgery or interview any surgeons so I went with the RAI.

I did it on april 15th. I didn’t have any problems during it, it was pretty easy and really hassle free, most of it is really hygiene based. (funny part is I actually had a thyroid storm when I did an uptake scan, which is a really really tiny dose, more problems with that surprisingly)

I’m a bit strange, my levels started tanking after 2 weeks, not the norm.
I’ve been on snythroid for about 7 weeks, I’m completely hypo now.
Feeling much better, I ended up with body aches and being really tired when my levels started going down (I still have some body aches). The only other thing I noticed is my weight has been frozen at what I weighed when I did the RAI, something to think about.

I know everyone seems to have a different tale to tell. But I can say I feel much better now.

Good luck with your decision making! I know it’s daunting. I was really scared about the RAI, I was able to call the hospital and pick the radiation scientist’s brain and rattled out all my concerns, that really helped me.

[mwhitney]

in reply to: RAI #1179677

They discovered my graves at the end of Feb, this year. I had rapid heart rate but normal blood pressure, jitters, the shakes, it was terrible. I had never fely physically that sick, I was scared for my heart.

I spent barely 5 weeks on methimazole before I had a allergic reaction.
I waited a week and a half and did the RAI on April 15th.
Just one little pill, 3 days on suto isolation and my levels were already plummeting by 2 weeks (I’m a rare exception though, it usually takes longer for most people, I’ve been told I’m the fastest they’ve ever seen the levels drop ever, but my body tends to be over sensitive). I’ve currently been talking 100mcg of synthroid for a few weeks now.

I’ve been falling asleep a lot, like I lay down for 10 minutes and pass out somewhere from 2- 4 hours. But I’m already hypo in the T3. And my TSH had been coming up a bit. I just re did my blood tests yesterday, I fell asleep again today, I’m expecting I’m still very low.

I’m glad they caught yours early, they caught mine right as it was setting in as well, but I’ve heard horror stories from others who’s probably went on for months and possibly years, untreated graves can make you very sick.

What ever your decision there are plenty of people to ask on every facet of this process and disease. Hang in there! and good luck!

[mwhitney]

in reply to: I started my synthroid today! #1178875

Hello everyone.

I did blood work at the end of last week. I saw my endo. monday.
My TSH is starting to come up, still low but 0.56 – better than my previous 0.006

My T3 is officially gone hypo.
And my T4 is in the normal range.

I just upped my Synthroid to 100 mcg, she thinks this should be my normal dosage, based on her calculations.

I’ve gained more weight. While I’ve barely been eating, I eat a little and then feel full, I’ve hardly been hungry at all. And tired, I’ve been sooo tired. I go to rest for a few minutes and find later that I’ve fallen asleep for 2-4 hours. I’m still looking tired.
I figure once it normals out, I’ll probably go back to my normal metabolism.

I did my RAI on april 15th, so it’s been 5 weeks.
I thought I’d check in.

[mwhitney]

in reply to: Am I the only one who is Hyper and have gained weight #1179034

nope, I went to being 105 (granted I was underweight and just had been told I needed to gain) went hyper. Did the RAI 5 weeks ago and I’m currently 130.
I gained 15 pounds just in 3 weeks I was waiting to start anti-thyroid meds.

I’ve been this weight before, actually this was my normal weight for many years. I haven’t really been in a position to exercise, been so tired (waiting to up my synthroid dose and my mom’s had pneumonia). But my appetite is way down. Back to picking at my food as usual.

Hang in there!

[mwhitney]

in reply to: I started my synthroid today! #1178874

So far, I’m feeling fine.
My sleep patterns have gone back to what they were pre- thyroid problems.
I’m looking tired. But that’s not exactly new. haha

But my throat is feeling scratchy near my thyroid and my voice has been somewhat hoarse.

Has anyone else experience this after their RAI?
I know my levels have dumped down very fast. But I was wondering if anyone else experienced hoarseness or feeling a bit scratchy afterwards?

Thanks for any input!
Hope everyone’s having a good evening!

[mwhitney]

in reply to: I feel like giving up #1178849

My mom went through cervical cancer almost 14 years ago.
I sympathise with your having to go through uncomfortable and embarrassing exams and treatments. It’s no picnic.
But even if it’s a problem in the last place you want to deal with, it’s important to have it checked to make sure everything is okay. You have to listen to your body.

I hope everything comes back normal for you, and that it goes well.

Have they explained to you, why something like this would keep reoccurring? Or why biopsies would be needed again, anything they do for it to stop it?

Hang in there!

[mwhitney]

in reply to: radioactive iodine treatment #1177159

Hello, I did the RAI 3 weeks ago.

I should tell you that the meds are not a cure for Graves, you can prolong other treatments with them and hold down your levels, but it will not make it go away forever.
My understanding of the treatments for graves is that the end result is being hypothyroid either eventually with RAI or surgery.

As I said I did RAI 3 weeks ago and I was VERY scared and concerned about it. I felt better after I was able to call the hospital and ask the technicians any question or concern I had about it, right down to the mouth guard I wear at night. haha. They told me that after 3-4 days any radiation left over dissipates. You might consider calling the local hospital to see if you can ask questions.

After 5 weeks on methimazole, I had to make a quick decision, without more time to interview surgeons, I had to go with RAI. The med made my very sick. I didn’t like the idea, but my time was over and a decision must be made. If you’ve done an uptake, it’s pretty much the same experience- go in, take pill, go home.

Mine was completely uneventful, other than staying away from people, it wasn’t that inconvenient or scary as it sounds, the hospital gave me a very small list of things to follow, most of which were hygiene related and anything that touched my nose or mouth to be disposed of separately.
If anything I took a nap my first day and drank more water than I knew I could.

And I found out that my RAI has worked wonderfully, at 2 weeks my labs were already at the high range or normal, I am already out of the hyper zone. I don’t think this is a typical case. I’m going in for tests tomorrow, I’m hoping I dropped lower again so I can start the synthroid.

[mwhitney]

in reply to: How long until the RAI treatment starts to work? #1178750

It sounds like everyone reacts differently.
I’m 3 weeks out. When I did my blood test last week, I found out that I’m already out of the hyper zone and am at the high range of normal. In every thing but the TSH which has remained the same as hyper.
I’m going for another lab test tomorrow, and then hopefully if I’m dropping some more I can start some synthroid.

I haven’t felt any hyper feelings, my hands even stopped shaking. I think during my RAI 3 days I had 30 seconds of heart pounding and that was it.

But my body is strange, and I know when I took the methimazole I think it majorly sank my levels, I felt terrible.

I’m sorry you’ve had such a rough go after the RAI, I hope it kicks in soon and gives you a break, hang in there!

[mwhitney]

in reply to: meds, nightmares and feeling blah #1177657

I ran out of time to explore my options very early.
So I didn’t have time to talk to surgeons about my personal complications to begin with, and discuss the robotic surgery with anyone unfortunately.

I had to make a snap decision to do RAI a few weeks ago. I did the RAI two weeks ago, it went really good, I didn’t even have any problems or even side effects with it. Which I was really surprised.

I’m glad to hear that someone else liked the idea of the robotic surgery and had no complications with it. Thanks you for letting me know about your experience with it.

If I had more time to explore it, it’s probably the surgical route I would have gone with.

[mwhitney]

in reply to: After RAI, am I supposed to feel like this? #1178661

I went to see her today, just as a precaution I did my labs yesterday, and I’m really glad I did because I’m already at 2 weeks out at the high end of the normal range for everything except the TSH.

She said she’s never seen it work that fast on anyone. I’m not all that surprised my body tends to be over sensitive, I get all the bizarre stuff.

She wants me to come on next week and redo my labs on thursday again, She thinks by then I’ll be able to go on a low dose of synthroid.

I guess that’s why I’m so sleepy, but great to know I don’t have to muddle through this for 8 weeks. But if I did- I’d probably go into the thyroid coma with my luck.

My face is still swollen on the left side, she still not sure what’s going on there, I get that my body is packing on some fat again, I’m back at my average weight about 125-130 pounds. But I have a feeling once I’m leveling out and regularly exercising again, I’ll slim back out again.

[mwhitney]

in reply to: After RAI, am I supposed to feel like this? #1178659

I was supposed to do my labs today, but when you start yawning every 30 seconds when it starts at 1 pm, things sorta slip your mind.

I’ll go do them tomorrow, my endo should be able to get something, hopefully. or at least be able to see them and call something in or something after I see her. She’s been really good about getting me in when I have a weird problem come up. I my body tends to be hypersensitive to things to begin with. But I’m not really sure I’m supposed to be so tired. I figured that come when the dump down started. But I never felt like I really went hyper when I went off the meds. And only had maybe 30 seconds of that heart pounding during my RAI isolation time.

I haven’t gotten to any labs since all this went down, since the meds went wrong to begin with, then I was off for a week and a half. And then did the RAI. It’s been crazy.

Thanks for the responses.

When I looked at other’s experiences they seemed to be all over the map, it’s like everyone get’s a different facet of what can happen, it’s so weird.

[mwhitney]

in reply to: Started my RAI today. #1178504

That sounds like a good idea.

I was diagnosed about 6 or 7 weeks ago, I didn’t really like the sound of my options and went with the meds, but I didn’t tolerate them well at all, they made me feel miserable and then my face on the left side swelled and my lymph nodes were feeling sore. I talked to my doctor and she took me off them.

When I went to see her I figured I’d be put on another medication, but because my reaction wasn’t a normal side effect I couldn’t try something else.

I had to decide that day, because letting it go hyper mode and rebound wasn’t a good idea. I also have cervical dystonia in my neck so surgery was not a wise decision, I thought I wanted it, but without time to interview various surgeons, I decided for RAI. Less of two evils at this point.
When I scheduled it they let me ask questions to just about everyone in the department, I was able to ramble off what ever I wanted, which really made me feel a lot better about it, it seriously made me not afraid, and took the anxiety away.

And now that’s it over, I can just wait for 8 weeks and wait for synthroid. I might not be a picnic for a few weeks, but it can’t be worse than the 5 weeks on the methimazole.

[mwhitney]

in reply to: Started my RAI today. #1178502

I was told I might feel like I had the flu, But I literally didn’t feel anything.
maybe a little bit sleepy, that’s it.

I honestly felt worse when I did my uptake test.

today was my third day, totally easy, done.

Now I just get to wait. haha.

[mwhitney]

in reply to: Started my RAI today. #1178500

So far it’s been pretty good, no problems at all.

They did tell me to stay away from children and pregnant women because they are more susceptible than adults.

It’s not like you can’t be in the same room, but you just have to be at least 3 or more feet away. You would be able to talk to your kids, just not be in close contact.
That’s what I did with my pets all week, a quick pat and talk to them, but no snuggling. The first day has the highest amount of radiation after the second you would have less than half, and it’s mostly gone the third day, but you just play it safe.

Most of it comes out in your saliva, sweat or urine, that’s just what you mostly watch out for. They told me anything that might had gotten trace amounts of radiation on would be gone after 3 days, so you don’t have to be paranoid about things in your house.

They might not understand, but you could find away to explain it, that you have a bad cold for 3 days, and you don’t want them to get sick.

Between everyone else that lives in my house and my pets (4) of them, 2 birds a dog and a lone lizard. And my mom who has max radiation exposure already, I was really worried, but it’s been very uneventful and easy, and not as complicated as half the things you read online
.
The hospital gave me a very short list of instructions, which were mostly hygiene , anything that touches your nose or mouth to be disposed of separately, clothes and sheets washed separately, hydrate, and stay 3 feet away, but minimal contact like riding in the car home was okay.

[mwhitney]

in reply to: Started my RAI today. #1178497

Thanks! So far I seem to be doing fine, I got a little sleepy and took and nap but that’s as exciting as I’ve got.

Honestly, this hasn’t been hard, or terrible or really even that inconvenient.
It sounds so scary when your first diagnosed. And then you start reading the restrictions, but alot of what your reading depends on your dose, and your not getting anywhere near the amount of radiation as a thyroid cancer patient. I think they said I got somewhere between 10 or 15 milicuries just to be sure my thyroid goes bye bye.

So you drink a lot of water, and hang out and watch tv alone, stay across the room from everyone, be the only one to use a specific bath room, wash your hands a lot, try to pay attention to things you put in your mouth, tell you dog you sorry you can’t pet him. And after 3 days any radiation dissipates because this isotope only has a 16 hour or so life span. I feel like the graves it’s self has been more of a hassle.

To anyone else who’s thinking about it or scared like I was, telling you, totally not scary. I asked a ton of questions to the nuclear physicist, which really helped, you can even call and pick their brains if it helps.

So far, not even remotely bad.

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