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  • jeannet
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      Hi, I am new to this forum. I found out 2 weeks ago from a second opinion- an endo surgeon- that I have Graves Disease. I went last week to an eye doctor that specializes in TED to confirm that I had that as well (just in one eye). The endo surgeon gave me two options: RAI or surgery. I opted for RAI and took a low dose pill of 15 mci of 1-131 this past Friday. I did the 2 days of isolation and had sent my 3 children away over the weekend. The nuclear tech was very sure that they would be fine to come back by monday since I had such a small dose. I feel a little uneasy, not knowing much about this. Has anyone else had this dose and only done minor isolation? And my second question is has anyone ever experienced extreme itching after RAI ablation?? I can’t find any info on this online and I have had severely itchy skin especially palms of hands and bottoms of feet. I also feel more hyper since RAI; more jittery and heart racing more and more paranoid. Anyone experience that as well right after RAI ??>

        Post count: 178

        Hello Jeannet,

        I had 15 mCi like you beginning of May 2012.

        My nuclear doctor told me isolation for two days.

        I do not have children; a husband and two cats. It was my vet who told me to keep my distance from the cats for six days yet after the two day total isolation period I could have them in the room with me and short periods of time next to me.

        I had terrible itching with Graves symptoms off and on and a bit after RAI yet more my back and stomach areas. It all subsided in a few days for me.

        I had more hyperactive feelings post RAI for about a month. I told my endocrinologist and I have a pulse oximeter here and resting heart rate was going over 100 bpm yet nothing like it was when my Graves was in full swing which was 120-140 bpm resting. My endocrinologist and my internist both told me keep an eye out if my resting heart rate was consistently over 100 bpm, then he would prescribe a beta blocker. I did not need it; I also have normal to lower blood pressure normally.

        I found out prior to RAI I have moderate TED in both eyes; no steroid though as my thyroid eye doctor said it was not necessary for me. I am being monitored by my thryoid eye doctor and moving forward after two visits with my thyroid eye doctor within my now 14 weeks post RAI, my eyes are have no changes in measurements and I will be checked every six months for three to five years post RAI. My thyroid eye doctor who knows a lot about this Graves business told me that the antibodies will be active post RAI for some time.

        It will get better; things have really changed for me. Yet at 14 weeks not hypothyroid yet and I’m hoping this coming up blood work I am so I can get on Synthroid. Hopefully others will comment as we all have had different experiences.

        Best of luck with all this….beach

          Post count: 2


          Thank you so much! That helps very much knowing that there could be hope. I am very optimistic that I will feel better in weeks to come. I am thankful that I haven’t had the effects a lot of others have had such as salivary swelling and neck soreness. Just a little tenderness in neck, which is a surprise. I think the low dose really helped and I was put on prednisone for 3 days prior, which I think helped my ted. I will hopefully get to address my itching issue tomorrow with my endo doc. I also think it’s just my graves going really hyper right now too because i do remember back when my graves was at its worst I was itching ALOT. I am on propranolol for my bp, but i don’t take it regularly like i should. And I will probably invest in a pulse oximeter as well! I hope you continue to do well on your path to remission! And hopefully I will start feeling as well soon.

            Post count: 178


            Your welcome and thank you also; it sounds like you have everything under control with your medications and working with your doctor.

            I did not have any salivary or neck soreness issues either.

            I was offered propranolol by another endocrinologist on an as needed basis not every day. Turns out I did not.

            There is hope and I am as calm as anything now and pulse is in the low 70s, high 60s and sometimes lower. I’ve never, ever in my lifetime had a pulse so low except off and on when on antithyroid Methimazole yet that was that medication forcing it down; once off of it, heart rate went higher. So the issues I had like what you are having now, have subsided for me in almost four months now and for some sooner and some later. My endocrinologist told me up front that if the RAI worked, I should be hypothyroid by six months post RAI. Which so far it has.

            There is a light at the end of this tunnel; I take it one day at a time as I still do not know where the future will bring me, yet things have improved thus far. Only issue I have is the weight and part of that was being drug induced hypothyroid 3 months on Methimazole back Winter 2011; I have some gain now post RAI yet I know of people who also had success keeping that down once they got on the right amount of T4; I have basically had a very good diet and exercise plan most of my life and even after years of smoking, never gained one pound until this interesting Graves treatment episode. Plus I am in my 50s and there too are many who get this disease at a much younger age. Being close to the change of life I am sure has something to do with things. Yet to me, being healthy in the sense of not having to fear for my heart going into a storm or consistently high heart rate which I had even a long time before my diagnosis, is much worse. I corresponded with two younger people who had RAI in the past year; on Synthroid, no weight gain and moving ahead not even thinking of it anymore!

            Best of luck and look forward to hearing how you are doing in time if you want to share….beach

              Post count: 326

              The isolation precautions are just that – precautions. Because we’re exposed to radiation in many forms over our lifetimes, the precautions are designed to limit your family members’ unnecessary exposure. You aren’t going to give them cancer if they come near you after RAI, unless maybe they have had 280 X-rays or MRI scans in the last five years and the RAI exposure is the last straw.

              I had 10 mCi on a Friday, but the hospital refused to administer it until the nuclear radiologist had time to review my entire medical history. Apparently, I didn’t look sick enough for him. So it was late in the afternoon by the time I could actually go home. My dog was at the sitter for the weekend (he’s 18lbs and can’t be more than a foot away from me), but my boyfriend refused to leave me alone. I begged, pleaded, even kicked and screamed and told him I didn’t want him there, simply because I didn’t think it was worth the risk. He thought it was – he was worried about me having a reaction or just being lonely. Now he’s an ex and I’m pretty sure he doesn’t have thyroid cancer. If I found out someday that he does, I might feel a little bad, but it was his decision to be around me while I radiated all over my apartment.

              Because I had such a small dose and was so hyper (I think my uptake scan came back in the upper 80s or 90s – it was 2 1/2 years ago now), I’m pretty sure he actually received very little exposure. I called the nuclear medicine tech over the weekend and asked if I needed to take Monday off since I was told 72 hours of isolation but I received my dose around 4 p.m. on a Friday. She said I was fine to go back to work, but I sat out of our morning staff meeting since we all crowd around a conference table. I ate lunch alone and didn’t pick my dog up until after work that evening. Everyone at work is healthy, my dog is healthy, I could care less about the now-ex, and the RAI finally worked after 22 weeks.

              I did not experience itchiness. I did have the sore throat many others experience – it felt like strep for two days. I sucked on hard candies and drank a lot of water to flush my system, and did feel very hyper by Monday evening. I went back on the PTU for a few months, never stopped the propranolol (still haven’t 18 months later), and was told to go to the ER if my resting heart rate ever reached 120bpm. It did once, about a week after RAI, but I simply took an additional 10mg of propranolol and was fine.

              Like you, I also had minor TED when I did the RAI and took a round of prednisone starting before and ending a few days after RAI. I ended up developing moderate TED the same week that I finally went hypo, so my physicians and surgeon attribute the TED to my TSH skyrocketing, not to the RAI itself.

              I’m still struggling to find the right dose of Synthroid, but my endocrinologist confirmed that I have no remaining thyroid tissue – which is good because I had a nodule/cyst/tumor on the left lobe that actually sent me to the ER two months after RAI when I could no longer swallow. As my thyroid died, so did the mass.

              Glad to hear you’re on the road to recovery. Let us know what the itching turns out to be.

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