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EndocrineWeb Community Advice

Young woman with Graves Afraid of RAI

From: Young Woman wit... - 4 years 16 weeks ago

Recently I made an appointment to take radioactive iodine to treat my Hyperthyroid.
I've been on tapazole for 2 years now, went off the medication, tested and my thyroid was still hyper. The discussion with the doctor was that after 2 years I should try the RAI. I should of done more research when i was first diagnosed and just getting to it now.
The reason I went to the doctors in the first place was that I recognized that something wasn't right as I now had history of fainting, and had fainted recently as work (working in the bush piling for fire suppression, outdoor, physical work), I was not doing anything but jumping out of he truck when I felt the usual symptoms. I'd get hot, my heart would start to race, and my vision would start to go black. Sometimes I would catch myself having these symptoms, and would cool myself and lay down and focus on deep breathing. I should mention that I would only pass out for a couple seconds.
The first episode I can remember was when I was quite young properly 12 years old. I didn't have another one till grade 12, I was 18 years old. I had worked late the night before, got up early and was going to go to town with my mother. I had slipped on the stairs and hit my elbow. Just as I was opening the door to head out, the episode hit me. My mom had called an ambulance.
The next episode happened while I was in college, at a friends place. I had pulled an all nighter that day for finals and was finally relaxing with friends that night. I didn't eat much but was waiting on dinner. I was chatting with friends on the porch when the episode hit, and luckily a friend had caught me before I hit my head on the cement.

I graduated, got on with my life when the episode at work happened. I made an appointment to see the doctor.
He listened and got some blood work done and my thyroid turn out to be hyper. I also wasn't gaining weight. I had been 110 lbs throughout high school, college and after college.
I was started on tapizole right away. I went from 1, 5mg pill a day to 5, 5mg pills a day and back down to 1 pill a day. I had some episodes in between the variations.
I will also mention that I have a stressful life. My younger sister has had Lyme disease since she was 3 years old, and that is a whole another story really. My mother is easily stressed by this, but even before my brother and sister were born, my mother is a hard person to handle. When she was angry, and yelling at me, I dealt with it by being the opposite, mute, and I still do deal with her the same way sometimes.
As I do research I finding that I would be trading one extreme for the other. One of the doctors (The endocrinologist) I deal with had mention that Hypo can be dealt with daily medication. At the time this reassured me. His biggest concern was if I wanted to have children. I told him yes. He asked when do I see myself having children? I said within the next five years.

I don't like having to take pills to begin with, I don't want to gain anymore weight ( from 110 lbs to 125 lbs now. Can't fit any of my clothes anymore), nor feel brain fog, or be even more depressed then I already am. I need my energy. I was never comfortable about putting radioactive iodine in my body to "kill" my thyroid. It never sounded like a solution to me and I know I need a working thyroid. Ideally I'd like to keep it, and work on getting it normal without long term drugs.

What I'm looking for is people who have gotten the procedure done and how they feel (the ones I've seen don't sound like they are happy with the results) bad or good. People who may have had similar symptoms ( the fainting thing in particular ). If they're people who have had hyper and "cured" it by taking the natural route of managing their stress, taking vitamin D, and changing their diet (I'd like to know what that diet consists of ). Or if they are people taking a different natural approach, what that approach is. I want to know how well it's working.
Any and all feedback is welcomed.

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1 Response

Is this good advice?

Hi, and thank you for taking the time to share your story with us. We're so sorry to hear about your experience with hyperthyroidism.

We wanted to reach out with recent research about radioactive iodine--in comparison to thyroidectomy and antithyroid medications--though please note it is an article written for medical professionals.

We hope you find some relief soon and wish you the very best of luck.