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  • Jfouts79
    Participant
    Post count: 2

    I would like some advice. Should I be concerned my Graves antibodies are still high five years post RAI. My tush is 0.5. Yet I get really cold a lot…like chills. I am also completely exhausted all the time and not in the same way I was pre RAI. I have read that sometimes TSH can be low but you can still be hypo due to antibody system although I could not really absorb all info in that article. Do I need to be. Worried I still have some Graves antibodies? I think 147 was my approx number on top test.

    Kimberly
    Keymaster
    Post count: 4294

    Hello – It’s not uncommon for antibody levels to remain elevated post-RAI. There was a study published in 2008 by Laurberg, et. al. in the European Journal of Endocrinology that looked at antibody levels for patients who had been treated with ATDs, RAI, and surgery over a period of five years.

    The ATD and surgery groups had similar results: a major drop in antibody levels during the first year, and then a more gradual decrease over the course of the next few years. With RAI, the antibodies spiked significantly within the first six months and then gradually leveled off. After five years, antibody levels for the RAI patients were still higher than the ATD and surgery group (although much lower than they were before treatment).

    Hopefully, your doctor is also testing Free T4 and T3 and not just TSH. For people who are 5 years post-RAI and are feeling well, the TSH alone is fine. However, since you are symptomatic, the additional information from T3/T4 testing would be helpful. Some studies support the idea that the antibody levels can work to suppress TSH.

    The biggest issue with elevated antibodies at this point is if you are planning a pregnancy; if that is the case, a consult with a high risk OB/GYN would be helpful to assess the risk of passing antibodies on to the fetus. For patients who have thyroid eye disease, some doctors will also use the antibody tests to assess the stage of TED and whether a patient is ready for surgery, although not all docs use this.

    Hope this helps!

    Jfouts79
    Participant
    Post count: 2

    Kimberly,

    Thank you for putting up with my typos. I was typing on an iPad and autocorrect changes things all the time. My TSH level will not stabilize. I think my Free t4 was elevated above normal range but not by much. Free t3 I do not think was checked. My TSH has fluctuated between unmeasurable and twelve on the same exact dose of medicine over a small window of time. I have seen all Endocrinologists in my area and now I supposedly am seeing the best. I just want to feel better. I have felt like crap ever since RAI.

    I also take a bunch of chronic pain meds so it is possible they interfere although unlikely according to Endo.

    At next appt I will ask for all things to be measured again, and hopefully the doctor will do the appropriate testing.

    My sister had to have orbital decompression surgery. My mother and myself have eyes that bulge a little when we are stressed out I.e. Can see entire iris of eye, but nothing like what my sister had.

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