Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
  • Anonymous
      Post count: 93172

      Just discovered this bb. My daughter has had Graves for 4 years . She was on PTU for 3 years, then weaned off of it. Her levels were fine for 8 months without meds, then the stress of school brought
      Graves sypmtoms back again. She’s now back on PTU. Her dr. wants her to have RAI this summer, but after reading numerous personal horror stories of RAI from other Graves sites, I am terrified for her to have RAI.
      Has anyone had success with staying on PTU until levels are good, then weaning off until symptoms appear again? The more I read, the more confused I get. Thanks.

        Post count: 93172

        There are people on this board that have had all 3 treatment options. Most have success and don’t come back to this board so you don’t hear all of the success stories. There are many of us with success stories though. The ones that aren’t successful are the ones who post here the most, which is understandable. They are looking for help.

        I had RAI two years ago. Mine was successful. The RAI did kill my thyroid. Now it’s a matter of tweaking my dosage. I have good days and bad days. Some days I have energy and others I don’t.

        My GP told me that it would probably take 3 years for me to feel normal. His wife has Graves. Most of my progress was in the first year. As I said, it’s just a matter of tweaking my dosage.

        This has got to be difficult to handle has a teenager. I was a teenager a long time ago. The important issue is for your daughter to be treated. If ATD’s are no longer an appropriate treatment, then RAI or surgery are your choices. Both treatments have pros and cons. Now you are trying to figure out what is best for your daughter. You can use the search button and read through prior postings on this board. There is a recommended reading list on the website, if you’d like additional information.

        Your daughter is blessed to have a mother who cares about her like you do.


          Post count: 93172

          I posted this response about a week ago to a very similar question. I will repost my response here for you. If the doctor is recommending RAI then you need to ask what the compelling reasons are.

          Here is my response to the a previous question that answers yours.

          Posted by : Jake on 4/27/2004 at 3:01:39 PM

          Hi Jacque and welcome to the NGDF.

          Yours is a very common complaint of the newly diagnosed. The vast majority of people who are diagnosed are recommended to have RAI as the first line of treatment. Often it is for a valid medical reason and needs to be considered based on medical need.

          There are three treatment options for Graves’ disease. One, being Antithyroid drugs (ATDs) and they are taken to lower the level of thyroid hormone in our system and bring our ranges back to normal. The usual course of treatment is twelve to eighteen months and then the doctor will decrease the dose and see if you go into remission. The down side is that it can affect liver function and the formation of blood cells that make one prone to infection.

          If your levels go higher again they usually recommend radioactive Iodine (RAI) to kill off the thyroid and then you go on replacement thyroid hormone. RAI has been used for over 50 years and has been proven to be safe and effective in treating Graves’ disease. The down side is the thyroid dies off gradually and you will need frequent monitoring to ensure you do not go to far into the hypothyroid range. There are many sites that will tell the reader they feel as they due because the RAI, when they are in fact left too hypothyroid or hyperthyroid and continue to have symptoms of one or the other.

          The other option is thyroidectomy. Surgical removal of the thyroid or parts of it. The down side is it is major surgery and there is a chance the doctor can affect your vocal cords or your parathyroids. A good plus to this is you go hypo almost immediately and your doctor can start you on a replacement dose much faster than RAI .

          You need to talk to your doctor and ask why s/he is recommending RAI without giving ATDs a try first. There is often compelling rational for doing treatment early so ask.

          As for being around your children? It is a wise precaution to keep some distance. Some people go to a hotel for a few days and make it a mini-vacation. Others like myself stayed at home, ate off paper plates, slept on the couch on a sheet that was washed daily and stayed about 6 feet from my wife and child for three days.

          The good news about Graves’ is that a full 90% of people get treated and go on to live their lives as they did before and consider the diagnosis of Graves’ disease a bump in the road.

          As for horror stories? Consider that over the past 50 years, it is probably close to a million people who have had RAI worldwide. That is a fantastic safety record. Surgery for thyroidectomy has come a long way and problems after surgery are now less then one percent for a competent doctor.

          So yes you have options. Get a second opinion. It can’t hurt.

          We are only a click away.

          On-line Facilitator
          Co-Author “Graves’ Disease In Our Own Words”

            Post count: 93172

            Thanks for the info, Jake & Linette.

          Viewing 4 posts - 1 through 4 (of 4 total)
          • You must be logged in to reply to this topic.