[Kimberly]

#1062491

Hello – First, I want to make sure that your doctor discussed with you the restrictions on pregnancy after RAI, as this treatment option is NOT recommended for women who are pregnant — or are looking to become pregnant within 6 months.

Keep in mind that the stories you read on this board and often elsewhere on the Internet are from the patients who had the *worst* outcomes with a particular treatment option. Other patients may select that same treatment option, have a positive experience, and go on with their lives.

All three treatment options do have risks, so it is important to do your own research and choose the route that you are most comfortable with.

[jiboosmom]

#1062492

Thank you for your response. That is definitely reassuring. I assume thousands of people have this done yearly. Given that I have only been able to find a few really bad stories is good indication that RAI isn’t always a bad thing.

Yes, we are going to wait the 6 months to get pregnant.

[jiboosmom]

#1018064

Hello,

I am new to the board. I was diagnosed with Graves disease in January. I have been on PTU since mid January and after 7 weeks of trying to regulate my thyroid, my doctor decided to up my dose of PTU to 300mg. She didn’t like the dosage, especially since we are thinking of getting pregnant, so last Monday we discussed Sugery or RAI. We caught the graves very early, as I had a normal thyroid test, in March of 2010.

I met with a surgeon on Thursday of last week and he said RAI or surgery were both good choices for me, so I am going the non-invasive RAI route.

I have been on the board and have read nightmares about RAI treatments. Is this the norm? It is making me very nervous about havinb my RAI tomorrow. Also, I have slight cough. Should I be worried?

Any input is appreciated! I am really getting nervous based on all I have read.

Thanks!
Susan

[gatorgirly]

#1062493

Hi Susan,

I am 26, and had RAI just about a month ago and had a uneventful experience. My throat was a bit sore, and since I had been on Prednisone and didn’t get a flu shot for the first time this year (my endo is very much against it with active Graves, as about 50% of other endos are, whereas the other 50% encourage a flu shot), I came down with a cold/flu but it was completely unrelated to the RAI. I slept fine and didn’t put myself into isolation. I didn’t leave the house and I flushed twice and sent my dog to the sitter, but my boyfriend stayed with me the whole weekend (upon his own insistence). I’m so glad I went through with it. I have bloodwork on Friday and I see my endo for my first follow-up appointment on the 23rd. I’m starting to feel several hypO symptoms, which I’ve read is pretty normal at one month post-RAI. My thyroid didn’t dump at all once like many do, so that was a plus. I think you’ll feel so much better as soon as you swallow that pill, knowing it won’t be much longer until your body is actually better! Good luck!

[jiboosmom]

#1062494

Thank you so much! That is exactly what I needed to hear. Very reassuring! ” title=”Smile” />

Good luck with your bloodwork! Let us know how it goes!

Susan

[jiboosmom]

#1062495

I had my dose this morning and so far so good. No nausea. Just a bit tired — though that could be from my lack of sleep over the past week. I’ll let you know how things go over the next few weeks.

For now, I am going to keep my distance from my family. The doctor said I should probably try to keep my distance from my son for 1 half life (8 days), but could relax a little after 3 days.

Thanks for all of your comments. I also did additional research and found that there were little to no complications at low dosages such as mine. So happy about that. I didn’t know, before yesterday that the graves dosage was 10% of that of a cancer patient. That made me feel so much better about moving forward.

This is really a wonderful board! Thank you for all of your input.

Susan

[lammie]

#1062496

Hi there

I’ve never responded so much in my life to a forum but this is my 4th response today as you will see above it’s all me at the top with latest replies. I did RAI 9 weeks ago, so happy I did it and I have hit hypo stage. Taking the new pill now and just hoping things keep getting better. For me, 1st month was really hard with the anxiety but it’s different for everyone, and gained around 3kgs I think. Please read any of the above for more info.

[jiboosmom]

#1062497

Thanks Lammie.

I had my RAI on the 15th and my main side effect was exhaustion and the sore throat. I am still pretty hyper (suffering with insomnia , but on a good note, I am still losing weight. ” title=”Very Happy” />)

I am nervous about hitting the hypo stage. Please keep us posted on how everything goes! When did you you start feeling hypo? How did you know it was coming on? What medication are they putting you on? How are you feeling now?

Good luck in your journey! Hoping things start to normalize soon!

Susan

[lammie]

#1062498

Hi again, no problem hope all goes well with your recovery. For me, I probably only just gained that weight 1-2 weeks ago but I basically still had hyper symptoms. I did get exhaustion here & there but not enough to think I had turned hypo. So I actually didn’t being to "feel" that I was becoming hypo (only from seeing the weight gain in my face). So at my appt, it wasn’t a surprise to learn I did go hypo and so he put me on Thyroxine one tablet every morning. I was on 2 pills of Carbimazole for a month (and 3 pills 2 days after RAI). So the first appt I had after RAI was about 4 weeks and he could see it was working and then told me to go down to 2 pills so I think that’s what helped me get to hypo stage. It doesn’t really make sense but you basically go hypo with hyper symptoms still mixed in with some weight gain LOL.

Hoping I feel a bit more normal by the end of the week as it is day 4 of my new medication.

[jiboosmom]

#1062499

I just wanted to give everyone an update. I am 5 weeks out and had my blood drawn last week at four weeks out. My levels are almost normal! My TSH is still a little low, but that is the last thing to change. The other levels are within normal range (the high side of normal, but normal none the less). So it appears the iodine worked (and most likely still working)! I stopped my meds a month and a half ago, a week before the RAI, and I feel sooooooooo much better. For about two weeks, when I was off the meds, I felt pretty horrible — had heart palpitations and just felt exhausted. I haven’t had any palpitations in 3 weeks and I finally have my energy back and am so glad I did the procedure. Only 5 more months before we can start working on another baby. ” title=”Smile” /> Yay!

Within the next 2 months, I imagine I will probably go Hypo and need to start thyroid hormone, but for now, I feel fantastic!

Here are my levels without any PTU:

TSH – .011
T3 – 4.2
T4 – 10.1
T3 Total – 216

These are better than my levels were pre RAI while on 200 ptu. The lowest we were able to get my T3 pre RAI was 5.8 and my TSH was .009.

Overall, I am really glad I did it. I felt pretty run down for a couple weeks after the RAI, but overall, not bad. And now I feel great! So totally worth it and given my fear of surgery, this was the best route for me.

Thanks to everyone for your support. I will defintely stay in touch. I am getting additional bloodwork in a few weeks.

Susan

[micija]

#1062500

Hi Susan,
I have had two RAI treatments and neither was successful. I didn’t get sick or have any major side effects. There’s nothing to fear. I hope yours is a success! ” title=”Smile” />

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