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  • Anonymous
      Post count: 93172

      Hi,
      Depending on how much thyroid was removed by the RAI you may still have some thyroid still functioning. Based on what you describe your thyroid replacement levels should be monitored more frequently. How often do you have them checked? After you are put on a new dose your doctor should order blood tests for you in six weeks. This is to make sure that dose is working right for you and your levels are in a good range. If you are having hypo symptoms, call your doctor’s office and tell hm/her that you feel like your levels are off and you would like to have them checked. Write down your symptoms as they occur and keep it handy when you speak with the doctor.

      After having RAI, six years ago, it took a good year to have me fine tuned. At one point they thought I may need another dose of RAI but it also spiked back up. Now I take a more pro-active voice in my health care and the doctor listens and checks my levels, It still fluctuates up or down but for now I am regulated.

      Best of luck to you!

      Dee
      NGDF, Asst. online facilitator

      Anonymous
        Post count: 93172

        I had a subtotal thyroidectomy almost 40 years ago at age 15. Today my eye doctor told me that Graves’ Disease can recur. How can this happen if I don’t have much of a thyroid gland left?

        Anonymous
          Post count: 93172

          What is meant by “Graves disease” here? Is it excessive levels of thyroid hormone? OR is it the eye disease? That can make a difference. The course of eye disease is not affected by the thyroid treatment. Also, if sufficient thyroid tissue remained after the surgery, it might be theoretically possible for increased levels of antibodies to be able to rev things up enough to either make someone hyperthyroid again, or to dramatically decrease the level of replacement hormone they need.

          Bobbi — NGDF Online Facilitator

          Anonymous
            Post count: 93172

            You have me wondering………After RAI ( I know is some cases it is necessary to take the treatment again) but when the thyriod is destroyed is it still possible to have the graves’ flare up again from the thyroid or by too much replacement meds only? And is there any test the drs. do to see if the thyriod is completely destroyed or do they only check by labs? How often will I probably have labs taken after the RAI, am now 4 weeks after will return to Dr.Mon.,and when do you usually get put on the Synthroid?
            I have ordered the book recommended, in my case I think mine is heredity and thought it would be good to pass down to family. Have found out my grandmother had thryoid problems, but is thought she was hypo.
            I have learned alot from this site.
            Thank you and wishing everyone better health!
            I’m 51 and also thought alot of my symptoms were premenopausal!

            Anonymous
              Post count: 93172

              There is no direct genetic link known as yet. As gene mapping gets more and more sophisticated it is possible that a specific gene linked to Graves’ might be found. But at this point in time what we know is that there are “tendencies” in families toward developing autoimmune thyroid diseases. Families will contain a history of members with this disease, or other thyroid or autoimmune problems.

              The testing that is done after RAI (and forever) tends to be pragmatically based: WHAT are the blood levels of thyroid hormone and what needs to be done (if anything) to get them into the correct range? That is the issue. They do not redo scans, typically, or other testing. The main thing which makes us ill is off-normal blood levels of thyroid hormone, so that is what the doctors look for. At first after RAI or surgery they will test every two to three months (on average) until it appears that our levels have stabilized in a good spot. As long as adjustments are being made to medications, that three month or so recheck issue remains. When we have been stable at a dose of medication for six months or so, then the time frame widens. My mother was checked once a year when she turned up with stable levels of hormone on one dose of medication. I have never “normalized” so I am still going in every three to six months.

              Bobbi — NGDF Online Facilitator

              Anonymous
                Post count: 93172

                I’ve been in remission from Graves for four years. Last time I was tested (August) my levels were normal. But that was before the stress of Hurricane Katrina, losing my home, moving to another city alone, family problems, etc.

                Can stress cause you to have a recurrence? I can’t sleep, am gaining weight, anxious, eyes hurt, trouble concentrating. If any of this sounds familiar, it does to me too.

                thanks Nikki

                Anonymous
                  Post count: 93172

                  Sorry that you have had such a difficult time, I hope things get back to normal soon for you.

                  It may be Graves Disease that is causing your problems, but it also could be from the stress that you have been under, and not Graves at all. It is very possible that you are just feeling the effects of the trauma that you have been through. You need to contact a doctor and get it to see him so your levels can be check. Then you will know just what you are dealing with.

                  Diane B-On Line Facilitator

                  Anonymous
                    Post count: 93172

                    hi everyone. It’s been a couple of years since I logged on. I just wanted to tell everyone that I’m at 7 years and no Graves problems. I did have a brief incident right after Hurricane Katrina turned our world upside down. Now I’m settled in a new home and am doing fine.

                    So for all the new folks out there, don’t lose hope. You can get better even without RAI and surgery. It’s a tough road but it’s possible. Hang in there.

                    Nikki4612

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