[Pauline]

in reply to: Anyone NOT gain weight after RAI? and VENT #1064898

Hello,
I had RAI in mid-October. My symptoms were mild, and the RAI dosage was small. I saw my doctor just before Thanksgiving and my "numbers" were fine. The only symptom I had at that time, that had just appeared, was swelling around the eyes. Just after that, my face became very puffy, my period stopped, I gained 10 pounds in 2 weeks eating less food–in fact my appearance changed so much, that friends and family were concerned. I have always had a normal weight, so this is very unusual for me. Anyway, I had bloodwork taken again, and yes, it was quite low, and I was started on synthroid. I have been on the synthroid for 1 week, and nothing has changed. My endo ensured me that in a week, I would feel better, and that the weight would "melt off." (Her words, not mine.) Is it common for this to happen? Should I call my endo again? Or give it more time? Could my thyroid levels be continuing to fall? Has anyone else experienced this sudden change in thyroid levels?
Thanks.

[Pauline]

in reply to: Story and Looking for Input #1169339

Hello Kimberly,
In terms of symptoms, I do have some "minor" symptoms. I do often feel warm (or could it be menapause?), have been feeling occasionally breathless upon exertion, occasionally have mild heart palpitations, and have a subtle hand tremor. But generally I feel well. Would this constitute symptoms that would warrent RAI?

I do feel under the gun about this because of the expiration of the RAI-U test. I have to have it next week, if I don’t want to do the tests again. If I had know that there was a time limit before I did the test, I would have waited until I knew what I wanted to do. I thought that it was just another diagnostic test. (But that’s not really important now.)

Thanks again. You have been so helpful–a voice of reason in this process.
Susan

[Pauline]

in reply to: Story and Looking for Input #1169337

The guidelines you mentioned are for older adults >60 years old, and I am 52. Would the recommendations be different for younger people. I was monitored for 4-5 months by doctor #1 before she recommended treatment. I did bring up the subclinical issue with doctor #2, and her reply, as I said before, was that I could wait, but it is unlikely that I will go into remission. She feels that I will eventually need it, so why not do it now. She is also concerned about bone loss and heart issues as I go through menapause. Both doctors are recommending RAI, so I am strongly considering it, I am very worried about it. Thanks. Pauline

[Pauline]

in reply to: Story and Looking for Input #1169335

Hello again,
Thank you so much for all of your help. My husband thinks I’m crazy for dwelling on this after getting 2 opinions–he feels that I should take the recommendations of my doctors. Maybe he is right…. Anyway, I was unable to speak to doctor #1–we have been playing telephone tag– but the bottom line is that she is adamently for RAI. My second doctor did put me at ease about medication, but it is not her first choice for treatment. I spoke again to doctor #2, who this time, also recommend RAI–but said again that she felt that I could wait if I wanted to (with monitoring and beta blockers), with minimal short-term ill effects, since my condition is "mild." Her reason for recommending RAI now was that, because of my age (52), she felt that there was a very small chance that I would go into remission on my own. She also felt that it was better to do the RAI now because I was otherwise healthy, and would respond well to the treatment. She said that if I waited and developed other medical problems, it would complicate treatment. She also talked about possible bone loss and heart problems if I waited too long, espeically since I was most-likely pre-menopausal.

So, here is my pro and con list, which is not giving me any comfort:
ATPs: Pro–reversable; Cons–side affects; may have to do RAI later; need to be closely monitored
RAI: Pro–reduces thyroid levels permanantly; Cons–small exposure to radiation; become hypothyroid; non-reversable
Wait: Pro–allows me time to make lifestyle changes; possible remission; Cons–may eventually need RAI or ATP anyway; bone loss and heart problems
Did I leave anything out?

My T4 and T3 levels appear to be normal (T4 Free 1.5 [range .8-1.8]; T3 Total 115 [range 76-181]) with low TSH (.02). I have antibodies for Graves and Hashimoto’s and high uptake on the RAI-U. Wouldn’t this put me in a subclinical category for Graves? Is it usual to use such permanant treatment in this case? Would it be unwise to wait, or should I go ahead with treatment? If I decide to do RAI, I need to decide soon, as my doctor said that my RAI-U test "expires" next week.
What would your advice be? Thanks. Pauline

[Pauline]

in reply to: Story and Looking for Input #1169332

Hello Kimberly,
Thanks so much for your help. I guess what threw me was my first doctor’s insistance on RAI. When I asked her about medication, she said that she did not recommend it because she knew 2 people who died from taking it. Well, that really scared me. Anyway, I will take your advice and make a pro and con list–and talk to doctor #2 again. Thanks again.
Pauline

[Pauline]

in reply to: Story and Looking for Input #1169330

Hello,
I found your story very interesting, and I was wondering what you decided to do. I, too, am trying to decide whether to wait, with beta blockers, or go ahead with RAI. On my last blood test, my TSH was .02, but my T4 is 1.5 and T3 is 115 (which I believe is normal). I tested positive for both Graves and Hashimoto’s, and my uptake was high on the RAI-U. One doctor recommends RAI, the sooner the better, and another says that I could take beta blockers and then wait and see if I go into remission, because my Graves is not "severe." My first doctor said that she would not recommend ATDs because of the potential side affects. Any comments would be greatly appreciated.
Pauline

[Pauline]

in reply to: Success stories with RadioIodine treatment? #1169599

I am trying to decide what course of treatement to take for Graves. I have been looking at the pros and cons of Rai and medication, and have been getting conflicting information. So, I have a few questions:
1. Why do doctors in Europe usually perscribe medication and doctors in the US perscribe RAI?
2. How frequently do patients have side affects on the medication?
3. I have read that RAI treatment only affects the thyroid. Then why do we have to stay away from people and follow precautions after having the treatment? I have 2 young children and work with small children and pregnant Moms, so I am worried about this. Also, if others can be affected by the radiation, wouldn’t it follow that other parts of our bodies would also be affected? When I went for the RAI-U test, the radiologist said that after treatment, I could return to work after 1 day. This is different from what I have been reading.
Thanks.

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