[Kimberly]

#1066533

Hello – I would definitely mention the swelling issue to your doctor, as this can come from several causes — and might not necessarily be related to the Graves’. Have you noticed lesions in the shin area? A small number of Graves’ patients experience a condition called Pretibial Myxedema, which shows up as a thickening of the skin on the shins and can be accompanied by swelling. If this is the case, your endo should be able to refer you to a dermatologist for further treatment.

As for RAI side effects, you will get a more complete answer from those who have selected this treatment option. But one issue to discuss with your endo is whether you have any eye involvement from your Graves’. A study that was presented at last year’s GDF conference stated that about 15% of patients who went through RAI had a worsening of eye symptoms. This risk can be significantly reduced with a course of steroids prior to RAI…although steroid use has its pros and cons as well.

Also, patients who have RAI will have fluctuating thyroid hormones until they find the "sweet spot" of thyroid replacement hormone that makes them feel best. If you do a search on this board for "RAI", you can read some of the stories from other patients who have been through this — and get an idea of what the process is like.

Keep in mind that you do have three treatment choices: Anti-Thyroid Drugs, RAI, or Thyroidectomy (surgical removal of the thyroid). All three treatment options have pros and cons — so it is important to select an option that both you and your doctor are comfortable with. Best of luck!

[Corinne]

#1066534

Hi,
After reading your post I was wondering what medications you have been put on? I was put on Methimazole and Propananol shortly after being diagnosed. A little while after I started taking the propananol (which I started about 2 weeks before the methimazole) my ears began ringing and feeling like they were filling with liquid. My doctor was worried that this may be due to the propananol. If you are on propananol and are experiencing swelling it is a good idea to check with your doctor to see if you are having a reaction to this drug. I wouldn’t stop taking your meds without talking to your doctor first, but I thought I would mention it so that you could bring it up to your doctor!
Hope you feel better soon!

[smiar]

#1018697

Good Afternoon,
I have been recently diagnosed with Graves Disease and was wondering what experiences or side effects people had from RAI treatment? I need to make a decision on treatment and I am nervous. In the past week my calf and ankles have been swelling really bad. Will this swelling go away once you do the RAI treatment?
The pain and discomfort from this condition has been unbelieveable. I will be glad when this evens out.

[Bobbi]

#1066535

You did ask about the side effects of RAI.

Basically, a sore throat. I didn’t even need to take pain meds for it, although some folks have reported greater pain from a sore throat than I experienced.

And, about one week after RAI, there was a brief period of really intense hyperthyroid symptoms. These lasted two or three days, max. This is a phenomenon we call "dumping" on this board. The thyroid not only makes thyroid hormone, but it stores it for future use. When thyroid cells are dying off after RAI, they "dump" their stored supply of hormone all at once. They are not making new hormone, so the period of time when we feel more hyper than normal is brief. And this is not to be confused with thyroid storm, because in thyroid storm hormone gets dumped willy nilly but new hormone is constantly being made, so there is no limit to the amount of hormone pouring out of the thyroid.

Those are the "side" effects. Some people will tell you that going hypothyroid is a "side effect." I do not because to me that was the PURPOSE of having RAI. And we do not remain hypothyroid forever, because replacement hormone (which is chemically identical to our own thyroxin -T4 ) works to help us maintain normal, euthroid levels of thyroid hormone in our bodies.

As for the swelling in your legs — you should ask your doctor what is going on. If you push a finger down on the swelling, and a dent remains, it is not pretibial myxedema. Pretibial myxedema is not a swelling as much as it is a lumpy growth, if you will. AT least that was my experience with it. The skin becomes more like the rind of an orange. But whether or not it is pretibial myxedema a doctor still needs to diagnose, and possibly treat whatever is going on.

[lucky]

#1066536

I had RAI treatment 3 years ago, with very minimal side effects, much like those stated above. However, it has been difficult for my doctor to find that "sweet spot" continually increasing my synthroid (I’m up to 225mcg which is fairly high). I’ve suffered with symptoms of hypotyroidism since about 8 months to a year after my RAI, with no real relief, and gained a lot of weight during year 2. I may very well be an unusual case, however, my point for telling you is this … at times I regret the RAI, only in that I have taken away any other treatment options for myself forever. I rushed to RAI soon after my diagnosis due to outside issues, but now wish that I had explored medication therapy more first. Just one opinion …

[Author]

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