[Hopeful23]

#1069590

Yeah, I have to disagree with you on the dosage. Runlacie is right. Your dose is figured out by your absorbtion, how much your body excretes and how much you need to absorb and gland size. Thats what the radiologist told me. Weight has nothing to do with it. I had a 98% uptake and my dose was 14.6 milicuries.

[runlacie]

#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?

[Hopeful23]

#1069592

runlacie,

Yeah, I actually got my BW Monday so Im just waiting on the results. Im not sure what to expect them to be. I would like to hear im going hypo range or at least im within the normal limits. I continue to see improvements so thats always a good thing. I am just struggling with anxiety/panic issues. I made a pro/con list and they leveled out so that didn’t help much lol buuuut it helped to see it in writing what wants there May 12 09 ya know.

Pro
1. Tachycardia Gone(resting Hr= 56-60)
2. Received treatment
3. Tremors gone
4. Leg strength/ leg tremors gone
5. On my way to a healthier lifestyle
6. Extreme hot flashes/ sweating gone
7. Insomnia gone
8. More better days/ not as bad of bad days or as long.

Con
1. Emotional issues (ie. depression, anxiety, panic. irritablity)
2. Weight Gain = 22lbs
3. Memory issues still
4. Still can’t work
5. Digestive issues
6. Still feel foggy/off at times
7. fatigue/weak at times
8. Puffy look

So, im taking it in strides i guess. Keep us posted on your RAI. We are all here for you as you know that ” title=”Smile” />

[runlacie]

#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?

[Hopeful23]

#1069594

laci. yeah. I have been dealing with this for four years. Its been the hardest the past year. I actually did have anxiety when i was in high school but was healed until my graves came about. You know i heard graves can cause benign tumors and found that interesting since you had one. Wonder if there is any correlation. Or just ironic. Hmmm. Yeah. I def post my results. Today was week ten for me. We shall see:)

[runlacie]

#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?

[ewmb]

#1069596

runlacie,
I was told that the "dumping" of the hormones would be around two weeks but I am still hyper ten weeks out. I posted a question about this for myself since I was reading normal at 3 weeks out and at 6 weeks was very hyper and just had blood work yesterday so am waiting. My endo seemed confused that I had these strange numbers. Anyway I think it is very individual so be prepared for anything until you are definitely hypo at some point. My Dad had RAI 10+ years ago and has never gone hyper but he’s unusual.

ewmb

[runlacie]

#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” />

[Ski]

#1069598

If the "dumping" occurs, it is usually around the two-week mark, for a few days at most.

If you’re still reading hyper after many weeks, it’s possible you just didn’t get enough RAI to stop the thyroid from reacting to the antibodies. As long as any tissue remains active, it can overproduce.

The dosage for RAI is a little science, and a little magic ~ they figure it out by means of several pieces of input, I believe, but one of the more important factors is your uptake percentage, as that determines how much ultimately remains in the thyroid after the first 72 hours. I’m not sure it has anything to do with height/weight, but I never asked that specifically. All I know is that they cannot say that, at your height/weight, with your uptake percentage, and your thyroid hormone levels, the RIGHT dose is "xxx." It’s not that easy.

[runlacie]

#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.

[ewmb]

#1069600

runlacie,
My dose was 15 millicuries. They thought that should be enough to kill it but I guess they might be wrong. My first uptake a year ago was over 70% but this time is was around 35-40%. I had been on atds before the first uptake test and scan. I had been off them for almost a year when I had the second test before my RAI. The only thing that my doctor and I can think of is that I am going into menopause right now and that may be complicating things. When the numbers come back we’ll see what he says then. He says that he has seen it take up to six months for the radiation to have its effect and that I may just be one of the longer ones. I hope the numbers will show that I am going the right way. If not I’ll have to decide how to bring up the possibility of a second dose. I really don’t want to do that again but if that’s what it will take…….I had such a hard time the first time with the doctors at the hospital not believing that I needed it when my endo and I said I did. They were of the sort that didn’t believe that I had enough symptoms etc..

I keep hoping things will abate but am going to bed with a heart rate around 100. Bad weather coming through tonight and that always affects me too.

Sleep well.

ewmb

[runlacie]

#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.

[ewmb]

#1069602

runlacie,
We didn’t have much rain just a lot of fuss…… Anyway, my HR was 100 when I went to bed and 100 when I got up. Go figure huh. I do hope to get some answers today but I am beginning to be afraid that the RAI didn’t work. Thanks for telling me about what your endo said about menopause. I really think that is part of my problem too. Remember that your thyroid will take up most of the radiation soon but that the isotope will take longer to decay once it’s in your thyroid. You won’t be a danger to anyone once it’s all in your thryoid. The half life of the isotope is about 8 days so it takes about 10 cycles for it to all break down or about 80 days. My husband is a scientist and I have had fun playing with his geiger counter. My thryoid is still putting out radiation but it is a lot less than what it was the first few days. I’ve had visions of my thyroid being a demon and that it’s angry that I tried to kill it and now it’s fighting back. I guess I need to get a new battle plan.

Have a good day. I am being kind to myself and staying home from work. Just can’t see myself being any good at the staff meeting today.

ewmb

[runlacie]

#1069603

ewmb- I am smiling at the thought of using a geiger counter on my thyroid! And at the demon. I feel kinda sorry for my thyroid, my endo told me it would shrivel up like ovaries after menopause. Now there’s a pleasant thought. I told it this morning to enjoy it’s last hurrah cause it’s curtains for it very soon.

[julies]

#1069604

Congratulations runlacie, on the RAI treatment ” title=”Very Happy” />
I have no other options now; I must do the RAI or have my thyroid removed. I went to a new endo she is a really good doctor she spent time with me explaining everything about my levels and how sick I was. I guess it really never hit me that other people would notice my symptoms. No one told me that my skin would get hot, not a temp, just warm to the touch. Well this endo increased my PTU up to 300 mg a day I was only on 100. I felt better right off, but I got this awful rash very itchy, it has started to go away. She had to take me off the medication. I have a sleeping pill, and could start the beta-blocker again, but the beta-blocker cause me gain so much water. I gain 15 pounds; I was up to 130 from115 in just two weeks. So that is out of the question. I lost the weight, in two days after going off the beta-blocker. I am walking and swimming almost daily. I am just trying to decide today when to get this RAI treatment. My endo told me it takes about a week to come in, and I have to have a pretty significant dose because my intake is 95 %. My thyroid is very Hungry My vacation is coming up I have two weeks at the beginning of August. I guess I am trying to decide and I must today, and I am asking all of you. If I do this the first week, will I feel sick during my second week? I have been through hell this past year. I really would love to go to the ocean and relax for a few days.

any feed back would be great

Julie

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