RAI Questions

[hyper48]

Hi everyone.  I had RAI 5-1/2 weeks ago for Graves' and have a vew questions.  Is there a specific dose for RAI for ablation versus trying to just reduce the thyroid production so you're not hyper?  I prefer the former, but wondering how I can tell by the dosage. (I'm pretty sure ablation is what he's going for, but I'm just curious.)  I received 15-20 mCi I 131. (I remember him saying "15," but this is what the range is on the treatment report.)  Also, I had 15% of radiation left at 3 weeks; is that normal?

I came to this board worried that because I seem worse at 5-1/2 weeks, that it's not working.  But seems for some it can take over two months.  That has calmed me down a lot. I know it can be done more than once, but, of course, I'd rather it worked the first time!

Thanks everyone!

[soooconfused]

If you feel worse again and/or your hyperthyroid symptoms appear to be returning, ask for another blood test (both T4 and TSH).  Don't suffer through it.  Once the Dr's knew that I went hyperthyroid after the RAI treatment, I was able to up my beta blockers. It's not good for your heart to be working so hard. The b-blockers take a load off the heart - they help me with the tachycardia (the speed of the pulse) but not the palpitations (the intensity of the pulse). But at least it takes some pressure off the ticker.  Yes, the food/digestion thing is definitely thyroid related. Every time I had thyroiditis or was hyperthyroid, I could not eat a cracker without my pulse jumping through the roof. When I turned hypo, I couldn't recreate a fast pulse if I tried.  So many things are effected by the t-hormone....it is the pedal to everything in our body and can throw so many things off.  The digestion thing is the worst for me as I was having tachycardia/palpitations after EVERY meal. My heart would stay elevated and pounding for 3 hours during digestion. In other words, with three meals a day, I was in that state for 9+ hours a day...ugh.  I longed to rest.  Good luck and glad to hear that you are feeling better.  Once your thyroid turns hypo, the drop seems to happen quite quickly.

[hyper48]

Dr. Lupo, thank you for answer!  I feel much better about things now.  I think my worrying about it possibly taking longer than I thought it should was making my anxiety and such worse.

Usse:  I didn't know about RAI causing a rise in thyroid hormone; that helps explain things. (Nope--no one told me it could happen!)  I was put on a beta blocker by my GP when I first went in because of my racing heart.  I did have to increase a couple of weeks ago because it wasn't working at well.  Probably those "extra" thryoid hormones kicking in!  I've been feeling a little better the last few days, but if I get really bad again, I'll probably ask my endo about PTU.  Thank you!

soooconfused: About a week after RAI,I started feeling more hyper as well. And the tachycardia after eating?  I get that sometimes, too, but I had no idea it was related to the hyperthyroid! Well, that's another physical problem that I can chalk up to that good ole' hyperT!  And I love your analogy with the marthon. I think I'll borrow that one from you, if you don't mind!!  Good luck on the synthroid!  Let me know how you feel on it.

Thanks everyone--you've really helped!

[soooconfused]

It took a while for the RAI to take affect on me. I received 15 RAI on March 1/2006. Within a couple of weeks I felt more charged up and more hyperthyroid than before the RAI. Blood tests revealed that my T4 elevated to 51 (normal is 11-22) and TSH dropped to .01. Had to increase my beta blockers as my heart tachycardia became even worse. That lasted a few months however, my latest blood test (as of last week) has finally showed that the RAI may have worked afterall as my T4 has now dropped to 6 and my TSH is a whopping 115!! Yep....not 1.15 but 115. But, this is nearly 5 months after the RAI treatment so give it time to work. I am starting on synthroid tomorrow morning (.50 mcg) and I'm petrified as I would hate to rev my body up again. Having experienced hyper and hypo symptoms.......I would much rather be hypo. Don't get me wrong, neither is a good thing but if I had to pick the best of two evils, I would rather be hypo. With hypo, you can at leats rest if you need to. With hyper, I felt like I was plugged into an electrical socket all day long...couldn't sleep, couldn't eat without getting tachycardia, palpitations ALL day, tremors etc. I couldn't watch TV, read a book, sleep or do anything to rest my body. I would be up for days/nights at a time. I've never done drugs but I felt sketchy....like what I would expect crack to feel like. It was awful. It is like running a marathon inside my body all day without any ability to slow down and rest. I would use the analogy to my doctor that if he was in the middle of a marathon run and someone asked him to drop and go to sleep while his heart was racing at 180 bpm's, could he?? Could he just drop right there in the middle of the run and sleep? I think not. So, it may take time and you may feel worse at the beginning....as I say, my T4 increased dramatically after treatment - a last fight by my thryoid and time needed to work off the extra thyroid hormone circulating in my blood stream after damaging the gland. BUT, you will get there. It will start to drop at some point and you will slow down and hopefully feel better. If not, sometimes another dose of RAI is needed. Good luck! I've felt better in the past few weeks being hypo than in 5 years being hyper and borderline hyper. I wish I didn't need to take synthroid as I would hate to charge up again......wish me luck tomorrow. Waaaaahhh.

[Ussie]

Hi, I had RAI Feb. 2004 and don't even remember how much they gave me.

Did you know that the RAI can cause a rise in thyroid hormones? Just wanted to tell you this can happen because it did happen to me. So, I was put on strong beta blocker and PTU to control the hyper symptoms. Maybe you were informed that this could happen.

Then, after going through the hyper from RAI, I started going hypo. Just watch your symptoms very close and notify your doctor if you start having unusal symptoms.

[Mark Lupo, M.D.]

I-131 dosing typically aims for ablation -- the goal is to definitively treat the hyperthyroidism without having to repeat the dose -- this usually makes people HYPO which is typically easy to treat.  The studies that have tried to identify a method to get the dose "just right" shown us that such a goal is not realistic.

It takes 6-12 weeks to see an improvement.  In the first few weeks, it may get worse before it gets better.  I usually do labs every 3-4 weeks to follow the trend and intervene early if a patient is becoming HYPO.