[Anonymous May 7, 2005 at 5:07 pm Post count: 93172]

#1080461

I believe the length of time one must wait between RAI treaments has has to do with the “life span” of the radioactive iodine, I 131, and the observed die off of thyroid cells as a result of the treatment. Apparently, it can take up to six months for the complete effects of the treatment to show. There could be other reasons, as well, and your best source of information is going to be your doctor.

One of the biggest problems most of us face is that we don’t “look sick”, even though we are majorly ill. At least, we don’t look sick until things are really, horridly bad and we have gone way, way too long hyperthyroid. You can be thankful if that is not the case. So friends and family can be less than understanding in some cases. It hurts. You can try printing out objective information from the web, or get one of the books recommended on a drop-down list at the top of the Bulletin Board, and try to get your friend to read up on things. But the bottom line is that words often fail to communicate the horrible way we feel, and some people just don’t have a lot of empathy.

Meanwhile, we are here to try to provide information and moral support.

Bobbi — NGDF Online Facilitator

[Anonymous May 7, 2005 at 7:58 pm Post count: 93172]

#1021514

Can someone help me with multiple RAI’s. I understand why the first one didn’t work completely, but I don’t understand why one has to wait six months for a second treatment.
I had my RAI on January 28, 2005. On February she decreased my Tapizol from 20mg to 10mg. March 19th she had me stop taking Tapizol completely. Prior to my April 8th appointment with my Endo, I had bloodwork done. At my appointment my Endo explained that the RAI didn’t do the job completely and that I would need another treatment. She put me on 10mg Tapizol, not the 20mg I was taking prior to my RAI. We agreed that I was looking better, this was my weight gain of 13 pounds. For the past three weeks I have been extremly depressed and had a major meltdown last Sunday (May 1). I called my Endo, had bloodwork done and she increased my Tapizol to 20mg for one month. I will see her Wednesday morning.
Currently, I have orders, from my last Endo visit, to stop Tapizol on Memorial Day, bloodwork on Flag day and see her on July 11th.
My one and only friend I feel is giving up on me. This doesn’t help, and I hope I can get him to read this site and realize that I’m not a total nut case, but rather going through hormonal imbalance and very sensitive. I love him so much and I need him now more than ever. It’s amazing what a hug can do these days.
Please, if anyone can shed some light on me and help me understand why I feel the way I do, I would appreciate it.
Why do I need to wait six months between RAI treatment?

[Anonymous May 9, 2005 at 12:14 am Post count: 93172]

#1080462

Dear Help me,

Gosh my heart goes out to you. It might help to remember that even people without Graves or any other diseases have melt downs at times. I hope you can be more gentle with yourself and find forgiveness in yourself more than anything right now.

As far as the RAI goes, it can take a several months to get the full effect of the RAI. A certain amount of time has to pass to let it take full effect. (why take more of the RAI than is needed) Your body will take time to heal after that. It’s not like it works overnight and then the magic happens and all is well and good. We all wish it would work that way and that quickly. After it does work, you may or may not go Hypo and that will bring on a whole new set of symptoms. It will take time to get your levels straight. I am 2 weeks post RAI. I find it really difficult for me to be patient, but I have managed to be gentle with myself. I hope you can find ways to be gentle as well. It is a process to healing and it won’t happen over night.

I chose to take this time to reassess my life and priorities. I let those close to me know when I am becoming overwhelmed and I don’t push myself like I used to. I take time to relax (bought a hammock and it is now a favorite meeting place with my boyfriend. He appreciates the time to slow down and have a good reason to not push). I make time to let my sweeties know how much I appreciate their patients. It won’t always be rough for me, it won’t always be rough for you. This will pass. You are already on the road to recovery cause you have taken steps with a treatment plan.

You are not crazy. This disease effects so many parts of the body and brain chemistry is one of them. You might have a funky brain chemistry but that does not make you crazy.

You mentioned that you were a single parent. How would you treat your child if they were the one with this disease? That is how you should treat yourself.

I am sending you a big understanding hug. I hope your Mother’s day was lovely and your passage through this rough time is quick and uneventful.

D D

[Anonymous April 2, 2007 at 8:20 am Post count: 93172]

#1080463

Hi all-

I was just wondering how long I have to wait now that I have been put back on PTU. Is 2 wks long enough to get me back to normal and then once im back can I just go off of the meds again right away and wait 2-3 wks before Rai. Also Im a little worried now that it won’t take as well since they had to put me back on. Any thoughts?
Thanks
Renee

[Anonymous April 2, 2007 at 1:11 pm Post count: 93172]

#1080464

I wish some of us here could answer your question, standingfirm, but honestly, NObody online could give you any accurate, honest information about how long you will need to stay on PTU again.

Going on and off PTU does not interfere with PTU that I know of. You do need to go off it again for a period of time prior to RAI, but PTU does not have a very long biologically active life in the body, so it disappears rather quickly (compared to methimazole, for example). Your doctor is going to have the best judgment about that.

I hope you get results soon.

Bobbi — NGDF Online Facilitator

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