[ewmb]

#1066427

Annie,
There are lots of stories here about RAI and how it went for different people. I was just so glad to get something that would help make me start to get well again. I went on anti-thyroid meds and didn’t have good luck with them. RAI was, for me, a better option than surgery for personal reasons. Whatever you decide just know that you will start to feel better at some point. The waiting stinks but you have to choose something as Graves will not get better on its own. Search through the old posts here and you will get lots of information. I have a daughter with autism so I know your pain as parent of a special needs child. I always felt so much guilt at not being able to do what I needed to do. I will say that it made her more independent and my husband learned a lot too in the past three years! I am now getting a lot better and know that I will be able to counsel my kids if they end up with this disease later on in life. As I look back on things now I know that I was not at my best for many years before my diagnosis. You will be able to decide on something with information. I had a rash on the anti-thyroids and have had no trouble at all on replacement hormone. Just keep reading when you have time. Hope you feel better soon.

ewmb

[Annie]

#1018679

I was diagnosed with Graves in 1997 although my levels were something that the endo in NYC thought should just be watched. Fast forward through 10 years and 3 pregnancies later, my levels hovered just above normal. In 2008, my levels increased significantly and I lost weight, had trouble sleeping, tremors and a resting heart rate of 120. I was worried about taking medication as I tend not to do well. My endo (new) started me on Tapazole and when I asked about chances of side effects/reactions, she assured me that that would not happen at the very low dose she was starting me on- 5mg. After a week, of course they started anyway and by day 28, I had been vomiting for 10 days and had a rash all over my body and ended up in the hospital with jaundice and a swollen liver (my doc did not return my calls during that 10 days- a PA insisted I had a stomach flu and the rash was from the graves and I should keep taking my meds). IN the end, I was out of work for 2 months. My thyroid function was still very high but I couldn’t take Tapazole or risk PTU and, since I had cat scans with contrast, they said no RAI either and just kept me on Inderal to keep my heart rate down. During those weeks, I did some reading and came across articles talking about graves and nutrasweet/aspertame and decided, since I drank a ton of it, to try going without. 2 months later, my thryoid levels were down 50%. My new endo agreed to just monitor me and 9 months later, my T4 was normal and I finally had a trace amount of TSH detectable.

Now, my thyroid numbers are back up above normal and my doc wants me to do RAI- I worry that, with my luck, I will either have a reaction to RAI or not do well on the drugs afterwords. I have an enormously stressful life (work FT, have 4 kids, 2 of whom are disabled (deaf and cerebral palsy) and my husband lost his job last June) and am terrified that treatment will leave me ill, sluggish, tired or not feeling well- something I really cannot afford. That said, my doctor has been scaring me with talk of bone loss, heart problems, etc.. that I risk by doing nothing… I have been reading up on other things that can affect the thyroid and am wondering if there are any alternatives besides RAI for me. Any advice?

[Kimberly]

#1066428

Hi Annie – If the meds are not an option, your other two choices are RAI or thyroidectomy (surgical removal of the thyroid). Your doc is correct that you do not want to leave the hyperthyroidism untreated. If you do a search on this forum for either RAI or Thyroidectomy, you can read stories from members on this board who have been through these procedures. But you won’t necessarily have the same experience with a particular treatment option as someone else, so it’s best to weigh the pros and cons with your doctor to determine the choice that is right for you. Best of luck!

[irishfam]

#1066429

I too was afraid of RAI. When I was going through my hyper faze, my life was much like yours. Husband, kids, one who was going through heart issues, and ended up with heart surgery. My goal was getting into remission. I was on the PTU for 4 years, slowly weaning down until I was able to go off of the meds. I was in remission for a year. Then started sliding the opposite direction. I am now in low thyroid for the last year. The doctor explained to me the goal of the auto immune disease (Graves) is to keep attacking the thyroid until it eventually destroys it. Some people, a small population of Graves disease patients can achieve remission and stay there. My aunt has. I unfortunately did not. RAI basically just bypasses the attempt of remission, and the roller coaster ride of possibly not making it. The ony thing that would also worry me, is, it is my understanding you have to be off all meds for something like 10 days before the RAI procedure, and it’s possible to go into a thyroid storm in the interim. So having lived through this, I would say, relax, don’t stress, do your research, and find the best path for you. One that you are comfortable with and know there are people out there who understand, you are not alone.

[Ski]

#1066430

It’s true that you need to stop taking ATDs prior to RAI, because they can limit the absorption of iodine into the thyroid, and of course if you’re taking iodine for this specific purpose, you wouldn’t want the absorption hindered in any way. If you’ve been somewhat regulated on ATDs prior to stopping them for RAI, it is less likely that thyroid hormone levels will spike dramatically in their absence, but it’s always something to watch for ~ thyroid storm can be extremely dangerous, and even a remote chance is important to know about.

They are, however, VERY rare. Know the symptoms well, go over it with your doctor, watch for the symptoms and react appropriately (go to the ER) if you experience symptoms the doctor has identified for you as those that could signal a possible storm.

[Author]

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