Carol asks…

I have graves disease, I don’t know what treatment to take , the radioactive iodine or surgery….?

They both have risks which makes the decision hard to do.
If it was you which one would you choose?
Radioactive iodine( risks…cancer, bulging eyes, thyroid storm, very sick after and need to be on isolation from others- once in your body there’s no going back may last up to 1 yr+)
Surgery ( risks:infection, bleeding, unable to speak again, facial paralysis, parathyroid damage and life long problems with calcium)
I’m stuck between a rock and a hard place..

Helen answers:

I had to make this decision in 2005 and I know how scary it is. The decision is ultimately up to you, but I can share my decision with you and hopefully it will ease your anxiety a bit. I chose the RAI. It’s the best decision I ever made. I went undiagnosed for so long and was so sick by the time I was diagnosed that I needed to choose immediately. At the time I had a 2 year old daughter and I was in iscolation for about a week, but it was actually a welcome break from everyone after feeling so lousy for so long. The only side effect I had was fatigue. It didn’t happen right away, but I started feeling better and better fairly shortly after. I went hypo 2 months later and started on synthroid, and it took a good year to find my right dose. During the time that I was hypo, I put on about 20-25 pounds, but it came off on it’s own once I was put on the right dose of synthroid and felt well enough to exercise for the first time in years. Now I keep the weight off by doing my best to stay active, even if it’s just taking daily walks. I think a lot of people gain weight after RAI or surgery because they still think they can eat they way they did before (I was one of those people), but your metabolism will no longer be the same. It won’t be slower than the average, it will be the same.

4 years later, I’m 29 years old, weight 120 and have since had another baby. I had a wonderful, uncomplicated pregnancy. I feel great. If I feel “off” I call my endocrinologist and ask if he can fax a lab slip over for me and I get my blood work done. Within 2 days I get a call back to let me know if he needed to adjust my meds. I’m pretty good at staying on top of the Grave’s and have a wonderful endocrinologist, which is the MOST important thing to do now that you are diagnosed. Check out the website ratemds.com and see what other patients have to say about your doctor.

Take care and GOOD LUCK!!! Feel free to contact me if you have any questions!

Charles asks…

Can I donate blood/plasma after having radioactive iodine treatment?

I have graves disease and was treated with radioactive iodine on 4/19/11. Since then, the only medication that I have been taking is atenolol, but I do still have a high amount of thyroid hormone in my system. I am curious to know when I will be able to donate my blood and/or plasma again. Also, do the rules apply for both blood and plasma, or are they different?
Thanks, guys.

Helen answers:

You should call the blood center and ask.

James asks…

Could Radioactive Iodine Treatment be responsible for watery eyes?

Hi, I can’t contact my doctor until tomorrow, so I was wondering if anyone could help with this small problem.

I had radioactive iodine treatment for Graves Disease on Friday.

I woke up yesterday with gritty feeling eyes and then they have been very watery all day yesterday and today.

I know RAI is slow acting and I feel great so I was just wondering could it be the RAI that is causing this or the 20mg of prednisolone I am taking incase my Thyroid eye Disease comes back?

All in all, glad I had the treatment though.
Thanks, Rhianna – you know I am so sorry I wasted so much time over this thyroid condition, wish I’d stuck to the tablets and had the treatment a while back. I’ve been back to my old self for a while now. Thanks for all your advice when I was hyper and not doing as I was told. Been on 20mg Prednisolone daily, for a week tomorrow.

Helen answers:

Hi AVAG,

I don’t think so. Side effects after RI are generally a sore throat which can sometimes occur after a few days, the salivary glands may swell which is caused by the iodine and not the radioactivity. Mild nausea might develop straight afterwards.

It could be due to your eye. The grittiness is definitely a symptom. Although the problem often causes dry eyes not watery. How long have you been taking Pred. For? Thyroid orbitopathy as you know affects the fat and muscles surrounding the eyes causing inflammation and engorgement of these tissues, as I said gritty eyes is a common symptom.

Sorry I can’t help much, but I really don’t think it’s the result of the RI. I will mention your question to Dr Frank.
Best Wishes
Rhianna

Lisa asks…

What result did you get with Radioactive Iodine for Hyperthyroidism??

My Endocrinologist today said that she wants me to do the Radioactive Iodine treatment for my Grave’s Disease. I have Graves Disease severally bad and medication is not working at all. I was wondering what other people’s results were from it. What are the pros and cons of this treamtent.

Helen answers:

I was diagnosed with Grave’s Disease in July 2005 and had RAI less than 2 weeks later. I went along with my Endocrinologist’s advice despite the horror stories I read online and I have done extremely well.

I can’t think of any cons….only pros. ALL of those symptoms are gone, I’m feeling great, I didn’t gain a whole lot of weight (I initially put on about 20lbs when I went hypO, but once I was put on synthroid it came off slowly), I had a great, complication-free pregnancy and have a healthy 7 month old baby girl, I’m NORMAL. I went years without a diagnosis so I went through a lot of suffering.

There’s so much to tell you, if you read the same things I did when I was about to have this done you probably have a whole lot of questions for someone who has been through it. Feel free to email me at huntbc1@att.net. Good luck!

Linda asks…

Will I feel really sick after having radioactive iodine treatment on my thyroid?

I am getting the treatment done next month for Graves Disease and I am wondering if I will be able to return to work and other activities without feeling really ill. My Dr has advised that I be isolated for 48 hours and then I can return to work.

Helen answers:

Most folks feel nothing at all from receiving the RAI.. I got really sick… I was over dosed.

Depending on what type of work you do… 48 hours isn’t a long enough quarantine. 72 hours is the minimum isolation from adults, 7 days from infants.

I wrote a page on things to keep in mind for prepping for RAI to make it easier to deal with quarantine, you are welcome to take a peek and see what things you might want to do to prepare.

Www.thyrophoenix.com/rai.htm

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