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#1 Sept. 18, 2012 09:28:02

janisdede
Registered: 2012-08-10
Posts: 1
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After RAI treatment, what to expect

I had 25mg radioactive iodine on Aug 29th, my throat became very sore on the outside, jaws ached a little. Was isolated for 7 days, careful to not contamanate my husband or cat. After that I went out but avoided close contact with others. After 14 days I pretty much led a normal life, no hugging though with the little ones. We had sex then too, hope that was all right, no one really said. I feel much better now not as tired, nor as shaky. Still hungry all the time though. Hope that goes away soon. I did gain 10 lbs in the months before my diagnosis, and fighting now to not gain anymore. I want to lose those 10lbs, but it sounds hard to do just yet. I have a appt to go back to the doctor 2mo's after RAI, and to get labs first. I am anxious to find out if I am some better. What should I expect from this point? Does it kill the thyroid quickly and you go hypo ? Then take meds for that to even out? Can someone tell me of their experience? Thanks so much for your input. Jan

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#2 Sept. 18, 2012 14:35:08

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 2675
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After RAI treatment, what to expect

Hello - Hopefully, you will get some responses from others who have had RAI, but here is some general info…

It takes varying amounts of time (one recent article says 6-18 weeks) for RAI to do its work in destroying the thyroid gland. Once you do go hypo after RAI, your doc will make his/her best estimate at what the initial dosage of replacement hormone should be, based on factors such as weight and age. Then you will have a follow up set of labs done in 4-6 weeks to determine if that is the correct dose for you. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in the body – and it might take a few iterations before finding the “sweet spot” that stabilizes your levels and gets you to feeling well again.

You might also use the “search posts” function in the top right-hand corner of the screen (you have to be logged in to use this) and search for RAI, Radioiodine, etc.. We have quite a few posters who have been great about posting their experiences as they have gone through the process.

Take care!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 Sept. 18, 2012 14:43:30

Bobbi
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From: Miami, FL and Zephyr Cove, NV
Registered: 2008-10-27
Posts: 1325
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After RAI treatment, what to expect

The point of RAI in today's world is to completely eliminate the thyroid (“ablate” is the term), and then go on replacement hormone. In previous decades, doctors sometimes tried to give the “Goldilocks” amount of RAI to make the patient not hyper, not hypo, but “just right” (euthroid). That didn't work most of the time, if euthroid was the goal. So, to get us well faster, they typically try to ablate nowadays.

It can take some months of tinkering to find the proper dose of replacement hormone. The replacement hormone is very finely tuned thyroid hormone. So, if we get too much of it, we become hyper again. Too little and we remain hypo. We have to wait a minimum of six weeks after a dose change before having new blood work, in order to avoid going on a hormonal roller coaster. (If the blood is tested too soon, the actual level of replacement needed might not be evident.) We have to be patient during these times.

And, while the replacement hormone starts being used right away in the body, we cannot expect it to be a “feel good” pill. It takes time AT normal levels of hormone for our bodies to heal after the illness that hyperthyroidism caused.

When I had my RAI, I became very pro-active about weight issues and eliminated sugars, and lost weight. I've recently done that again, with the same good results. I allow “nutritional” sweets – i.e. fruit, primarily – but ruthlessly eliminate any sweets that are empty calories. It does make a difference, for me at least. By eliminating empty calories, I've lost almost twenty pounds in the past year. It comes off slowly, but it is staying off. I hope you are feeling much better, and soon.


[b:3sz1pkbe][color=#008000:3sz1pkbe]Bobbi GDF Online Facilitator[/color:3sz1pkbe][/b:3sz1pkbe]

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