Please keep in mind that I am not a medical professional and cannot give qualified medical advice. I am a writer and someone who suffered with Graves Disease. As a writer, I wanted to share my experience to help others find the resources I wished I had and help you feel, I hope, a little less alone. While I will share what has and hasn't worked for me and you are welcome to ask questions about my experience, I urge you to contact your doctor for proper care and medical advice.
Best wishes, Amy Joy.
Will I gain weight after RAI treatment?
I imagine this may be different for everyone. The answer for me was: I gained weight initially--after RAI & before I began thyroid replacement hormone (in my case, Synthroid), and for a bit before the Synthroid levels were near the correct range for me. Once they got close, my weight dropped back and I am at the healthy weight I have been at for the bulk of my adult life (Yay!). While I can't lose weight overnight like I did when I had a hyperactive thyroid, it is not a struggle for me to maintain a healthy weight either.
How long will it take for my RAI levels to get into the correct range before I feel good again?
My guess that again, this will probably differ for everyone. For me, the key was discovering what my doctors didn't know: caffeine interferes with Synthroid absorption. So while my doctors kept telling me I could eat within a half hour to an hour after taking my morning Synthroid, the cup of coffee I had first thing after that half hour to an hour was up was actually getting in the way of me feeling good. I discovered this may have been the case via some online research and desperate to feel better, tested the theory. Sure enough, within weeks I was feeling better than I had since before Graves' Disease! Since then I've cut caffeinated beverages out of my life completely, so it's no longer an issue, but I've also started taking my Synthroid at bedtime to avoid other food interactions. As long as I take it at least 2 hours after I last ate (and I do have to be strict about this), my levels stay good and I feel great.
Will I feel anything during RAI treatment?
The treatment itself is a pill. I went into the doctor, a person in what looked like a hazmat suit walked in with a lead box, I wondered why I didn't get any protection and how it could be okay that they were having me put this in my body when it was obviously so dangerous, I swallowed it with a glass of water, and I left, wondering if I had done the right thing. The worse part was the bill (that's an expensive little pill) and the fear of what I had just done. Afterward, I felt a little tenderness around my neck, but it was so mild, it may have even been psychosomatic (I had heard you might have some tenderness before I had my treatment).
Is RAI treatment right for me? (Will I regret it?)
Whew. That's a really tough question. I didn't want to have RAI treatment. Generally speaking, I'm not in favor of invasive treatments or anything that causes permanent change to my body. (I don't even dye my hair because it seems too permanent!) However, I was very, very sick. And very, very scared. I did try medication, but the doctor found it was causing me liver damage and I had to stop it immediately. In hindsight, sometimes I wish I had tried another medication before moving to the last resort of RAI. But as I said, I was very sick. (I was having frequent grabbing chest pains & I have a history of heart disease in my family.) The fear of something more serious than losing the use of my thyroid is what ultimately convinced me to undergo RAI treatment. Sure, I wonder at times if there might have been another way. But I'm also feeling great now, only taking one pill a day, and my levels have stabilized. Would it be this way with another treatment? Who knows.
How do I keep my family safe while I under RAI treatment?When I underwent RAI treatment, my husband and I lived in a 1000 sq. foot house with one bathroom. What we did was divide up the house: I got the bedroom and my office, he got the kitchen and living room. (He slept on the couch and delivered food for me, for which I'm still appreciative.)
We had to share the bathroom, so after each time I used it, I cleaned it again. I can't remember what I used to clean with now, but I had read online what to do and followed the recommendations. As far as we know, my husband did not suffer any adverse effects of my RAI treatment. We also had a dog and a cat, and those my husband kept from me during that first week, and four years later, they appear fine as well.
Side note: I started this blog while I was secluded in the week after my RAI treatment. It helps to have something to do during this time. Let's face it: most of us could use the time to relax, but with the way our bodies feel with Graves' we may find this difficult. For me, writing always helps me feel better, and this helped immensely during this time.
Are there other things that will crop up now after Graves' Disease?
Unfortunately, for me the answer has been yes. Graves' Disease is an autoimmune disease, and this family of disorders appears to be quite a barrel full of monkeys. The first thing that came along for me was gall bladder disease (gallstones). From my research, when you have a hypoactive thyroid (as I did following RAI), you are at higher risk of producing gallstones. For me, this appeared to be true. This has not been fun. However, I have found that by learning what were my trigger foods (acidic foods and carbonated beverages in my case are the worst), I am able to avoid this problem most of the time now.
The second thing I've had to deal with is inflammation. This appears to be another auto-immune issue. In 2014 I went through testing for everything from Lupus to Rheumatoid Arthritis for join pain so severe, at times I walked like an 80 year old woman. The results: all negative. This was of course, both good and bad, since I had the symptoms of these diseases and read that once you have one autoimmune disorder, you are more likely to have another, I was worried. However, after the Rheumatologist had washed her hands of me, I came across the crazy idea that the things I was eating may actually be the cause of my pain. I tested the theory, and sure enough, I've been nearly pain-free since! Here's what it was (and I know it sounds nuts): nightshade vegetable intolerance. If you are asking what is a nightshade vegetable, so was I. It turns out, some plants develop an alkaline to ward off pests, and this alkaline can cause inflammation in some people with autoimmune disorders. These plants include: tomatoes, potatoes (white, not sweet), and anything from the pepper family, including paprika and chili pepper/powder (but not black pepper). My diet consisted of a whole lot of things from this family of plants, and when I cut them out, I regained my mobility and have been living virtually pain-free. If you want to learn more about this, there is information online including The Paleo Mom's website (she's a doctor and can give all the in-depth info as someone who has also suffered with auto-immune disorders).
So far, the inflammation and gall bladder issues are the only ones I've faced, and I've found solutions to both so that I can live a normal life. They have involved some diet changes, but I've discovered that there are so many delicious foods in the world, giving up some doesn't really mean I'm missing out. :-)