[ewmb]

#1069605

Julie,
I can tell you that everyone seems to react differently to the RAI. I had it 11 weeks ago and am feeling worse now than I did the week after. I am waiting to see if I am still hyper or have gone hypo. I hope the doctor will call this morning. I may end up being one of those who has to have a second dose. I really hope not but we’ll see. I’d try and schedule the procedure on a Friday if possible if your work week is M-F. This way you might be able to squeeze a few more days off from the weekend. I felt a lot better after a week but as I said everyone is different. I would plan on some time off at first to give yourself a break. If you feel better the second week could you go back to work and save the second week for later? I guess it all depends on how your vacation time is done and if you can carry it over to the fall.

Glad that you have been able to find a doctor who is helping you. I know what you mean about the beta blockers. I don’t want to go back on that. I got very constipated and my legs hurt and I guess I was taking on water. If my heart rate will calm down I will feel better no matter if I’m hyper again or hypo.

ewmb

[julies]

#1069606

ewmb
How long after do you get the blood work to see if the RAI worked?
My doctor told me two weeks after. I really hope that you get good news, perhaps your body is just taken longer to adjust to the RAI.

I have two weeks, and plans to do things, I am told I have to use my vacation time before I can do any short term disablity at job. So is it just decided first or second, I am leaning towards the second week, doing it on a Friday and maybe going back to work on a tuesday. I was going to have the RAI done in September, because my employer was given be a day and a half extra. My doctor told me I can not wait. What to do,

Julie

[ewmb]

#1069607

Julie,
I had blood work at three weeks and my tsh was normalizing. At 6 weeks I felt so bad I went to my GP here in town and had blood work. My tsh had dropped to .009 hyper levels. I had an appt. with endo this past tuesday around 10.5 weeks and that’s the blood work I’m waiting for now. My endo ( more than an hour away ) had no explanation about why my tsh had dropped again. If my levels haven’t improved I am going to ask about whether to do a second dose of the radiation. I had 15 millicuries, which seemed like a high dose to the nuclear med folks.

Sounds like you need to just do the RAI as early as you can with your doctor’s urgency to help you get better. I would go ahead and call now and try to schedule things before too long since there is a chance that the i131 will take longer to get to them than planned. They can always hold onto it a little longer but it would be bad not to have it available. I’ve read that there can be a shortage of the isotope at times when the reactor in Canada is off line for a while.

I’ll post when I get my new numbers. Hopeful had her’s around the same time I did and she’s gone hypo after about 10 weeks. She is a lot younger than I am.

ewmb

[Ski]

#1069608

The RAI can take a while to have an effect, but typically it does the most possible damage in the first six weeks, then continues to affect the thyroid on some level for up to six months. This is, of course, in addition to the antibody attack, which also destroys thyroid cells, but does it much slower than the RAI. Still, with the cumulative effect of the initial dose and its ongoing action, the two together can still produce some drops in thyroid hormone for months after RAI.

It ALL starts with the RAI dose that’s chosen. My first dose was just too small to get it done. Had I received just a couple of millicuries more at that time, I could have avoided my second dose. A large enough dose could almost guarantee a complete drop into hypo within a couple of months. These are questions to ask beforehand (which, obviously, I didn’t know about, and didn’t do, prior to my first RAI).

Still, it’s not as if I went and got tested at six weeks after my second dose and VOILA, hypo. It took a while longer than that to truly "hit bottom." This whole thing, from onset of disease to stabilizing levels, is one big waiting game. We do what we need to do, then we wait and see.

[runlacie]

#1069609

Hi Julie! How long have you had Graves’? I just did RAI on Monday and feel pretty much the same as before. My throat hurt a tiny bit and there are times when I definitely feel more hyper than before, so I hope that is the little buggers dying off. Nothing too bad, though. I’ve been taking a beta blocker at night to help me sleep since that seems to be when my heart really races, and last night I took it a couple hours early because I felt pretty bad. Had to work today and was kind of worried about that, but I felt okay at work. I don’t like taking the BB’s, either, they make me fat. We had our vacation the week before I got rai and I really wish I could have done it before vacation since then I would have felt like I was healing on vacation instead of just waiting to come home for the treatment. I only got 7 mCi dosage for the rai and am hoping that it will work since that seems to be on the lower end, had I known my dosage was going to be so low I might have made it perfectly clear to the radiologist that I did not want a return trip for more if it doesn’t work. Good job to you on the walking and swimming. I have lost a lot of muscle strength since I got this, have you? I agree w/ewmb that getting it scheduled asap is a good idea.

ewmb, no numbers yet? Geez. I’m sorry it’s taking so long. I’d be going nuts. Well, hopefully you got them this evening and just haven’t had a chance to post yet since it’s Friday.

I feel okay today. It was my first day to work since rai. I didn’t take time off for it, I just work part-time and wasn’t needed until today. Anyways, no problems there.

[ewmb]

#1069610

Runlacie,
No numbers yet. The doctor did not call me on Friday. I will hope for Monday but we’ll see. They have to send my labs to a big hospital and sometimes things slow down on paperwork.

Have a great weekend.

ewmb

[runlacie]

#1069611

ewmb, no numbers yet, bummer. I just don’t get why stuff has to take so long. Keeping my fingers crossed for Monday for you!

I worked today again. And wore my heart rate monitor to work. I’ve done this several times since I began noticing my heart rate increasing. I have a program that tracks all of the details, max, avg, etc. and my average heart rate was down a bit today for the 4 hours I wore the monitor at work (delivering mail), so I’m hoping that’s a positive sign. I don’t feel any different, though.

Just came from a little party next door and it’s nice that all of my neighbors and friends are asking me how I feel and why I am not running, but it gets old explaining. Taking a break at home, but have to go back since my 7 y/o is over there. I’d really like to just go to sleep ” title=”Neutral” />

[julies]

#1069612

runlacie

How are you feeling this week?

I was diagnosed in April 09, but I think, I know I have had this for a lot longer. Yes I have had muscle loss. My skin looks loose, not firm like it use too. I push myself to do all the things I can. For the last few days the heat has killed me. I have not been walking because of that. Going off the PTU really sent me into a tailspin. I am crazier than I was before. I suck in the iodine at 95 % rate so the endo told me that she is going to give me a large dose. My vacation starts this Friday, last day of work. My problem is I would have to get the treatment on August 3rd. I guess that is my decision.

ewmb did you get your numbers yet?

Julies

[runlacie]

#1069613

Julie- so they can’t get you scheduled earlier in your vacation so you have a couple days after to feel better? I was never sick enough that I couldn’t work, and it sounds like you are kinda like that too- trying to stay active and all. I felt a little worse than usual sometimes at night, but other than that I have been okay.

ONE WEEK AFTER- and believe it or not I think I am slowing down. Hands not shaking and buzzing is gone from my head. My resting heart rate is in the high 50’s now – but it was 45 before Graves’, so I still have a ways to go. I wore my monitor to work again today and my avg was lower than Saturday, and today was a lot hotter, so I was surprised. HR is also dropping on my walks. And I ran yesterday, not far and not fast. But I could not have done that a week ago. My doctor sent my blood work orders for to have my levels checked one month after the rai was done. I guess that sounds like the usual thing to do.

[RhondaG4]

#1069614

Congrats Lacie…..I know it feels great to have it over with huh? Remember to drink lots of water. My throat got really dry afterwards. Be good to yourself and rest if you need to. Hugs Rhonda

[Hopeful23]

#1069615

Heck yah Lacie
Thats awesome!!!!!!!!! Im sooooo happy for you. You keep on going. You are one of the LUCKY ones. Im happy for you though. You give inspiration ” title=”Smile” />

Krystal

[runlacie]

#1069616

Thanks, Rhonda & Krystal! I’m not ready to call myself lucky just yet… there’s still a decent chance the little bugger could decide to regenerate. And I still have a long road ahead to normal. You guys are the best, I’d be so lost without this board!

[julies]

#1069617

Runlacie

I am so happy to hear that you are starting to feel better and almost like yourself again. I made my decisionfor the RAI, it will be Labor Day weekend. My employer is given me a couple of extra days off. I called my endo yesterday, and I am hoping she will let me wait. I have been sick this long, a few more weeks will not kill me. Plus my goddaughter is having her first birthday on the 22nd. I do not want to miss that. I am happy with my decision; Thanks again for all the support.
Julie

[hyperm]

#1069618

Runlacie,

So glad to hear your news! Lets just hope that little bugger is a goner! Here is hoping that all settles soon!

m xxx

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