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  • Anonymous
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    Post count: 93172

    I had a second RAI. It will be three weeks ago tomorrow. It’s too soon for me to say if it’s helping yet. I’m going to the doctor tomorrow. I’ll let you know after I get the results from the blood work if my levels are going down.

    My doctor thinks they didn’t give me a high enough dose the first time. I was thinking it was a breeze, because the only difference I could feel was a sore throat. Now I know that it wasn’t working properly. They gave me a slightly higher dose this time. Plus they said I probably had some radiation still in my thyroid from the last one, which was five months earlier. This time I’ve having more symptoms than the sore throat. The first few days, I was nauseaus. I’m more tired. My eyes are worse. Forgive me, but I can’t remember all the symptoms. That’s another thing that has crept up on me since the second RAI. Don’t let me talk you out of it though. I emailed Nancy Patterson, which I was hesitant to do, because I know how busy she is. My doctor is a fantastic primary care physician, and in my opinion, he’s doing all the right things, but Dr. Patterson knows so much more about GD. She’s such a sweetheart. She got back to me right away, and told me that I’m probably toxic right now, and that cells and hormones are bursting, causing my mental anguish. These may all be good signs actually. At least I feel that it’s working this time. My main concern is forgetfulness. I’m going to post a question on this on the BB.

    A second RAI doesn’t happen a lot, but it’s not all that rare either. I know that I personally will not go back for a third if I don’t level out. I will opt for surgery the next time.

    I hope it’s the right thing to do too. I’m sorry that I can’t help you any more than this right now. If you want, email me and we can keep in touch with each other’s progress. I can’t email from the BB. I’ve contacted my server three times for help to no avail.

    Good luck and God bless.

    Maia

    Anonymous
    Participant
    Post count: 93172

    Hello Warriors,

    I just returned from my consultation with a radiologist regarding an RAI. First, I want to tell all of you, if you’re considering RAI, to set up a consultation appointment. The doctor was really young, and caring.

    THIS IS JUST 1 RADIOLOGIST’S OPINION – PLEASE DO YOUR OWN RESEARCH!!!!

    The nurse took me through the scan/update process and answered all my questions about that. The doctor went through the 3 treatment options with me and explained why RAI is really the best option (just the messenger here – Don’t start screaming at me – this is his bread & butter!)

    Some interesting tidbits to pass on –

    95% of the Radioactive Iodine is absorbed by the thyroid. The remaining 5% goes to urine, saliva, tears, sweat, feces and is disposed of after a couple of days.

    The Iodine can remain in the thyroid for a long time which is why it’s important to be continually monitored. A patient may have no trouble 5-10 years after treatment but then develop hypo-hyper symptoms because the iodine has finally left the thyroid.

    If you are on ATD you must stop taking drugs 2-3 days before Scan/uptake/RAI. Works best if you get all treatments right after each other ie scan 1 day, uptake 2 day and RAI 4th day. Also, Doctor said that you must be on a beta blocker before RAI is administered.

    60% chance that DR. will administer correct dosage 1st time. Meaning no hypothyroid symptoms, PTU or replacement hormone needed (I found this hard to believe!)
    20% chance that 2nd dosage will be necessary – must wait 6 mos.
    20% chance of overtreatment which means PTU or Synthyroid maybe necessary

    Eyes-
    Dr. DID NOT recommend taking steroids in conjunction with RAI, but did state that decision should be made under the consultation with my Endo.
    Dr. did recommend a baseline exam with a Graves Eye Specialist. That way if there was some sort of eye involvement, it could be tracked. Dr. said about 50% of patients do have some sort of TED but never has found that RAI leads to worsening symptoms.

    Precautions – For 3 days
    Dr. recommended staying away from small kids, no “relations”, flushing 3x, separate eating utensils and waiting 6-12 mos before conception.

    Dr. said sore throat can occur but to use OTC relief. May notice increased Graves effects 3-5 days after treatment (increased anxiety, fatigue) 6 weeks after treatment should notice a difference. In fact, Dr. said that no blood tests should be ordered until 6 weeks after the RAI because effect will take that long to show up.

    Dr. also gave me a copy of the consent form that must be signed. Also, told me to call him or nurse at anytime with any questions.

    So, that’s the highlights of my consultation. I hope I reported everything acurately – if not, please **kindly** point out any errors.

    Next Stops – 2nd opinion with a new Endo April 23 & Baseline Exam on May 10.

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