[Anonymous]

#1082947

The best person to ask that question of (why the higher dose) would be your doctor. It could be you heard the uptake numbers wrong. It could be you have more thyroid than you think you do. It could be neither of those things, but something else, and your doctor is going to be the best person to answer the question.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1022499

I was diagnosed with Graves in 1997. Took Tapazole for 1.5 years and went into remission. When it reappeared in 2002, I was reluctant to undergo RAI, so I tried herbal medicine for almost a year. Although the herbalist is highly-trusted and he vouched he cured many patients, it didn’t work for me. I then opted for RAI in 2003. Uptake was 75% and received 8 millicurries. The dr. placed me on the low iodine diet (though I opted for no-iodine just in case to increase my RAI absorption). Unfortunately for me, it was not successful. I just received my second RAI yesterday — 12 millicurries. What’s shocking to me is my uptake was 80% compared to 75% the first time. How can the uptake be higher when most of the thyroid had already been destroyed in the first RAI. After all, I only needed 5mg/day of Tapazole to remain within normal levels.

I’m 30 years old already and this has definitely been a roadblock in my family planning. I’ve been so bummed by this disease. Why me? No one in my family has it, so why me?

[Anonymous]

#1082948

The determination of how much RAI to use is based on a formula that considers uptake and size of the thyroid.

That said, a second RAI treatment, when it is needed (which is not often), is typically larger than the first. I had heard various reasons for this, but you would need to ask your own doctor for his/her reasons to be sure why it is recommended. As a background, though, In thyroid cancer patients, who have had a surgical removal of their thyroid before they receive RAI, their RAI doses are five to ten times the size of ours, and they have demonstrably less thyroid.

Bobbi – NGDF Online Facilitator

[Anonymous]

#1082949

Bobbi (and others)-

I think that in a general sense I understand the way RAI dosage is determined. My uptake was slow 45%, and my gland was at least 2X the normal size, plus I had been on PTU which historically can lower uptakes. So, whatever the base dose for RAI is: I was then given a little bit more for my slow uptake, a little bit more for the size of my gland, and a little bit more for the reason that I had been on PTU. The idea was to give me enough I131 to have enough taken up by my gland to destroy it. Since my uptake was slow and my gland was big, I required a larger dose b/c they figured that more I131 would be lost/secreted out of my body and that I would need more to kill my gland b/c it was larger (ie. had more cells to kill). Is this correct? The two nuclear medicine doctors were discussing my dosing in front of me (a senior doctor and a fellow doctor)and this is basically what I got from them. It made intrinsic sense to me. After the fact, my endo made the comment that the nuclear med. staff gave me too much RAI which caused excessive inflammation and extreme thyroiditis. I had significant swelling and pain in my throat that lasted for close to three weeks after my dose. The pain went away first, then the swelling, and then after the swelling went down my blood levels started to come down. Somewhere in the middle there (I think it was about 10 days after the procedure), my endo started me back on PTU to stop the conversion of T4 to T3 and work as an “insurance policy” or a stop guard for the severe hyperness. The PTU did help although it was slow to help (as I was told it would be). Fortunately I tolerated the beta blockers well b/c I was on a very high dose.

This is a generalization, but most people that I have heard of that had more trouble with normalizing after ablations were folks that recieved a small dose of RAI that either 1. was not enough to kill off the gland, or 2. took a long time to kill off of the gland. I suppose thinking about this; maybe I lost so much of the RAI that I really am in that catagory. I don’t know. I followed all of the instructions that I was given: fasting from the time of the dose until the next day; followed by lots of water to wash the remaining out etc. I probably think too much, but I seem to have a personal drive to figure this thing out. For several weeks I felt so bad that I couldn’t try to figure it out; but I am better enough now that I am trying to put together the pieces of the puzzle. It is frustrating to me that the doctors can’t tell me why I had the reaction that I did. I suppose moving forward it really doesn’t matter why it happened; but I seem to have a mental need to try and figure it out.

I have blood work done again in a week (it will be 8 weeks out from the procedure), so at that time I will have a better idea of where exactly I am. I am functional again, (not as good as before the procedure, but starting to feel good enough that I tend to want to do more than I probably should). I have three kids (8, 5, 3)so our house is busy. Ironically what I worried most about going into the ablation was the radioactive restrictions. Since I had a higher dose I had 16 days before I could cuddle with the kids, but by then I felt so bad that I couldn’t care for them. I really didn’t have trouble with the radioactive restrictions: I was prepared for them. What scared the heck out of me was the severe hyperthyroid for weeks that I was not prepared for, and the doctors struggled to get under control and then could not really explain.

I think that when I sent out my first message I was about 5 weeks post RAI and getting to the end of my rope. It’s been 7 weeks now, and I am so much better (just the last few days)that I am starting to be hopeful again. I still have the hyper symptoms that I was used to b/c I’ve had Graves for a couple of years now with periods of hyper followed by periods of “normal” followed by periods of hyper etc.; but the scarey stuff seems to have past. I hope that I will even be able to stop the beta blockers in the next couple of weeks. If the radioactive procedure was effective, then I would hope that I would continue to go in the right direction.

Having a family is certainly a blessing; although it has made this time extra tough. My husband is absolutely wonderful. We have a great marriage that has spanned more than a decade now; and he has been nothing but supportive. My kids are wonderful too; although they take alot of patience that I seem to be always short on these days. My 8 year old was scared to death a month ago b/c she thought that I was going to die. It is hard to explain to perceptive kids what is going on when you don’t really understand what’s going on either. The last few days, I have actually been able to see the cloud of doubt lift from her face as she realizes that I am going to be ok and that I’m not going to leave her.

This is getting long. You all are going to get tired of listening to me vent. I appreciate everything that you are doing to make me feel welcome; and I do appreciate your prayers. I did truly loose hope for a while: I had so many family and friends praying for me and I just continued to get worse. I looked at my husband one night and told him that we must not be praying to the right God. I know now, that I was just not patient enough.

Anne

[Anonymous]

#1082950

No, it sounds like you paid good attention to your doctors, and understand pretty well about how the RAI dose is given, and how it works. The posts I lost were not needed. ; ) I’ll add one point — an idea proposed in a research study about 10 years ago. It was a study looking at what happens after RAI to the antibodies that can affect the eye disease symptoms, and one of the comments in that study was that the researchers saw an immune system response after RAI that would increase, temporarily, symptoms of the disease. I do not remember whether this immune response was universal, or only present in some patients. Nevertheless,anything that revs up our immune system can produce a temporary increase in antibody numbers, which would then translated into disease symptoms (whether eye, or thyroid), and perhaps that is what happened in your case. If your immune system was activated by the RAI, then you would indeed have more severe symptoms of hyperthyroid for a while. Just a thought.

Bobbi — NGDF Online Facilitator

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