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  • prknight
    Participant
    Post count: 15

    I had my levels checked on Monday. Last month my TSH was 3.19 and six weeks later TSH is .43. My FT4 went from 0.74 to 0.82. My endo has put me back on 5 mg of methimazole. I was hoping after 6 months of this that maybe I was getting better!! Very depressed! I am trying to decide if I should just have the RAI done and get on with my life. I have gained 15 pounds since this all started in June. How long did some of you take methimazole before you went into remission? I realize that there is only about a 30 to 40 percent chance that a person stays in remission. I was just hoping that would be me!! How long did you all take medication before you decided to do the RAI? So frustrating!!

    Bobbi
    Participant
    Post count: 1324

    In autoimmune diseases like Graves, lupus, rheumatoid arthritis, etc., there are periods of time when symptoms rage, and then, for no well understood reason, and at no predictable time, the antibody levels go down and the symptoms can abate (remission). Over time, an episode of raging symptoms will return. In Graves, a remission is defined as being able to do without the meds for a year or more.

    The treatment options that we have for Graves do not control our antibody levels, they can only control our levels of thyroid hormone production. What treatment option you pick should be based on a completely realistic evaluation of your medical needs. There is nothing wrong with choosing any of the options, as long as you realistically understand what the outcome is likely to be and your doctor thinks that the option is appropriate. If the meds work to control your levels of thyroid hormone, without frequent swings into aberrant levels, and without side effect issues, how long you are willing to use them is usually your choice and has nothing to do with how long someone else used them. If the meds are not doing a good job of controlling your thyroid levels, or you experience adverse side effects, then you do need to evaluate your other options.

    I understand that your hopes have been frustrated, and I’m sorry. I do wish you luck with your decision.

    Ski
    Participant
    Post count: 1569

    Bobbi gave you great information ~ I just thought I’d pop in to say that the conventional wisdom is that we should be on ATDs (methimazole or PTU) for at least a year, preferably two years, before going off them and attempting remission.

    It’s true that longterm ATD use can be effective, and some patients find that, once they’ve arrived at a good level, they can take truly infinitesimal doses of ATD to remain stable.

    These are tough choices, but we are fortunate that we have three options to return us to health. There are some autoimmune diseases that leave the patient with no options but symptom control, and only one option at that. While none of our choices are perfect, it’s still a good thing that we have a choice.

    And one more Little Mary Sunshine comment from me, the Perpetual Pollyanna ~ at least you know what you’re dealing with. I think the hardest part for most GD patients is the time after symptoms have begun, and before the correct diagnosis is made. After diagnosis is made, it’s a process to health, but you’re closer all the time.

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