[runlacie]

in reply to: My big day! RAI tomorrow #1069601

Hi ewmb- hope you made it through the storms okay, we had them here, too. It sure has been a weird summer. One of my endo’s reasons for suggesting rai to me was upcoming menopause and if I did the ATD’s some of the symptoms could be confusing. Guess the same holds true for the time just after rai when we are in limbo. Hopefully answers for you today! My HR is always up higher before bed than at any other time during the day. Since that’s when it used to be lowest (when I was normal) I wonder why that is.

I feel sweaty and gross this morning. Very hot, even though I keep the AC at 74. But according to my paperwork, at 1:00 I will be no longer radioactive. Yay.

[runlacie]

in reply to: My big day! RAI tomorrow #1069599

Thanks, Ski! Yeah, nothing I read about dosage (and I read a lot) says anything at all about height and weight. Which is why it was amusing that the nurse said that to me. And some do end up hyper again and need another tx- esp those that didn’t have a high dose- which was one of my concerns since I got 7 millicures, which I think is on the low end. Pretty much what I learned was:

the larger the gland, the higher the dose
the higher the uptake, the lesser the dose
if you took ATD’s you might need a higher dose
women are more curable with a lesser dose than men
that’s all i remember, but I know nothing mentioned height or weight like the nurse told me.

[runlacie]

in reply to: My big day! RAI tomorrow #1069597

ewmb- what was your dosage? just wondering. I spoke to the nurse at the doc’s office today (she called to check on me) and asked about dosages and she was pretty clueless, told me the radiologist decides by your weight and height.

OK, I know it’s too soon to feel better, but I do. I guess it is just the relief that the rai is over with and so far nothing real bad has happened. The nurse was vague about when I might experience any adverse events and also unsure of when I would have bloodwork done or go back to the doctor. I really like my doctor but not sure I like the nurse. I also think she had something to do with me not getting the rai done quicker.

Tomorrow I will be officially non-radioactive! ” title=”Cool” />

[runlacie]

in reply to: seriously…. #1069521

okay, can i join the scream?????
I hope both of your results hurry up and are favorable.
and I hope my thyroid hurries up and dies! I’m sick of hyper!

[runlacie]

in reply to: Newly Diagnosed! #1069549

I think that you can get the eye disease at any time even can happen independantly of the thyroid disease – and the two diseases can run totally separate courses.

[runlacie]

in reply to: Newly Diagnosed! #1069547

If you have the eye disease and have RAI it can make the eye problems get worse. You’ll need to find out if you do have the eye disease. Your endo should be able to help with that or else refer you to an eye specialist. I was, at first, afraid of the rai because my Grandma has Graves’ with bad eye involvement and I didn’t want it to happen to me. But my doctor says my eyes are fine, so I decided to go ahead and do the rai.

[runlacie]

in reply to: My big day! RAI tomorrow #1069595

Hopeful- week 10! Hooray for you! I will have to research the benign tumor to Graves’ relation. It was actually after they discovered that tumor and they did all kinds of tests that they told me I had antibodies- but they thought I’d end up hypo with Hashi’s not the other way around. I see the endo at Clev Clinic for the tumor, he checks it every year- he’s gonna love the stories I have for him this year- that it turned out to be Graves! How are things going on the short term disability claim?

Well, last night in the middle of the night I woke up and thought maybe my throat felt funny. But this morning it seems okay. I really haven’t felt much in the way of side-effects, so I’m hoping this is working! I walked this morning and my HR was up a tad. I wear a monitor and am hoping to correlate the changes in my heart rate to remission. Today is my last day to officially be radioactive! Yay! This better work!!!

When is it after rai that people feel worse due to the hormones releasing? and does everyone get that to some degree?

[runlacie]

in reply to: Hyperm surgery today… #1069525

Best wishes and many prayers for Hyperm! Look forward to hearing from you!!!

[runlacie]

in reply to: My big day! RAI tomorrow #1069593

Hopeful, I’m glad you are improving!!! Wow, I read on another post that you have had this for a few years now. Did you have the anxiety before you got Graves’? I bet things will keep getting better all the time for you, especially once you get those levels stabilized- it does sound like you are going hypo (congratulations!). Hope you have your results tomorrow! I have had anxiety all of my life and at one point after a medical scare (adrenal tumor turned out to be benign) it was so bad that I had to take tranquilizers and was pretty much afraid to leave my house. It gets better. I promise. I started running not too long after all of that and it sounds crazy, but I think running has given me the self-confidence to rid myself of a lot of that anxiety. I’m handling this Graves’ crap a lot better than the adrenal tumor. Anyways, better times are ahead for all! Check in with those results, okay?

[runlacie]

in reply to: Newly Diagnosed! #1069544

TT = total thyroidectomy. I considered this at first but then realized that surgery was scarier than taking the radioactive iodine pill.

In the US, most do RAI. ATD’s are more common in other areas.

There are people who go into remission after taking ATD’s for a year or two, something like 30%. So that is a consideration. But even those who do go into remission usually end up hyper again at some point.

TT and RAI usually both result in hypothyroidism and lifetime thyroid replacement hormone pills every day. If you have Graves’ eye disease RAI can make it get worse.

[runlacie]

in reply to: Newly Diagnosed! #1069539

Hi Shellie!

Welcome! I’m sort of new, too. I was officially diagnosed about a month ago and just had rai yesterday. Waiting is a pain, huh? How long til your endo appointment? Have you made any decisions on which treatment you want?

I am determined to get back to normal. What makes you think that you might not? I agree that as crappy as we feel now it is hard to believe we’ll ever be normal again, but we will. I don’t have much patience and it seems that would be a good trait to have with this disease, but with treatment and time we are going to be okay.

Hang in there!

[runlacie]

in reply to: My big day! RAI tomorrow #1069591

Hi Ipark, I’m sorry you are not happy with your decision to do rai and I hope that it works out well for you anyways. I really did deeply consider all of the options before I did this and I still believe it was the right choice for me. I am sort of a hypochondriac, and I know myself well enough that to take the drugs and have the side effects in the back of my mind just would not have worked long term for me. I am much less wary of the thyroid meds (when I go hypo) then the ATD’s. I considered surgery but eventually came back to rai as the best and most efficient choice. Yes, with rai, they are killing the messenger, but they have already found the cause and Graves’ just doesn’t go away on it’s own. JMO, but better to just go ahead and kill it than to spend the rest of my life worrying I’m going hyper again.

Hopeful, how are you feeling these days??? Did you get your levels checked?

[runlacie]

in reply to: diet #1069552

I wasn’t given any dietary restrictions but I think they did tell me not to eat shellfish for a few days before rai. I just started tracking my food with the "Lose It" app on my phone since I have gained a couple pounds.

[runlacie]

in reply to: My big day! RAI tomorrow #1069588

Well, the only thing I have noticed so far is that my stomach was hurting me a few hours after the rai. My HR is down a bit, but only because the radiologist suggested I take the beta blockers (which I really had only been taking every few nights before bed when my heart was speeding too fast to let me sleep). My propranolol dose is 10 mg and I can take it up to 3 times per day- yesterday I took it twice. I am not sure I want to continue taking it since I think it makes me feel hungry and several years ago when I took a very low dose beta blocker for PVC’s I am sure it made me gain weight. I have gained about 3 pounds so far but think it is mostly because of not being able to run and also we went on vacation and ate too much!

I found some info on the rai dose- the actual formulas used, there are a couple different ones I found and the simplest one for me to interpret looks like this: I (mCi) = [est gland wt (g) x 80 – 150 uCi/g] / 100% 24rai
so it looks like the dosage is decided by gland weight and uptake results.

Cathy- I think my uptake was 70% but I can’t remember and am too lazy ” title=”Smile” /> too walk downstairs and look. I had a tough time getting my old beagle to leave my bed last night. Poor animals don’t understand. DH ran for the guest room, though!

Paloma- It took about 3 weeks for me to get the procedure scheduled, which irritated me because I wanted it over with so I could get better. I didn’t take anything while waiting because my endo said that I would just have to go off of the drugs before rai, so it didn’t make sense to her to have me start anything when I was doing okay without meds. My only big problem with being hyper is that I can’t run. I hope that you are doing well on the methimazole, and try not to get too worried about those potential side-effects, I think they are very rare and lots of people take the meds with no major problems.

[runlacie]

in reply to: My big day! RAI tomorrow #1069584

I am home! Glad that’s done with. Bought some sour lemon drops and I’m all set!!! They said my dose was very small and that the written precautions they gave me were extremely conservative and that I should just act as though I have a cold for the next couple days and try and keep an arms distance from others. Flush twice, sleep alone for 3 nights, and wash hands before preparing food for others (duh). I hope the dose was big enough to work without needing a second treatment, I only got 7 millicures. I read somewhere (?) that 15 millicures is average? I’d be interested in learning exactly how they decide the dose- I know it’s related to your uptake and thyroid enlargement. Wonder if it also has to do with your weight?

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