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  • Meredith2021
    Post count: 5

    Kimberly— on the 6-25 you wrote that ATA labels the evidence for ATD pretreatment before RAI as “Strong recommendation with low-quality evidence.” What does that mean? How do they label high-quality evidence?

    Re doctors and treatment, you said–“ there are a lot of other issues that aren’t fully settled, such as pretreatment with ATDs prior to RAI. “

    I’m worried. A doctor said to take ATD before RAI to block possible Thyroid Storm, maybe serious. Said most people don’t have side effects from ATD, but I fear them from what I read. How to predict?

    At least 1 study says ATD pretreatment NOT needed in many cases.
    Clip — NIH study– back in 2001. One of the authors is Dr. David Cooper of GDATF. Says– “The findings support the recommendation that most patients with Graves’ disease do not require antithyroid drug pretreatment before receiving radioiodine.”
    And, in the past GDATF talk on RAI, Dr. Avram said ATD is ‘occasionally’ given pre- RAI. Not sure why occasionally.

    Kimberly, I wonder what was your experience on Methimazole? I saw your post, March 2009, replying to question by ‘enough3’.
    You wrote:
    “I am on Methimazole, but I started creeping hyper again after my Endo and I agreed to cut my dose in half, because my levels had been steady for 6 months. So I understand your frustration!
    Hopefully, you can get a new set of labs soon and start to get things back on an even keel.”

    I read ATD side effects increase with longer use. As pretreatment, what’s chance of side effects like rash, hives, joint pain, mouth sores, nausea? How bad? Some reviews on Everyday Health site are scary.

    Since RAI has higher efficacy and less side effects, why do patients opt for ATD? Do they influence doctors, or do doctors influence patients?
    What posts to read here, pro/con?

    I would worry daily about signs of ATD S.Effects


    white blood count, liver. If have sore throat or yellow in eyes, etc — you must call doctor right away. So,if stop pills, when do side effects stop?

    I’m 79, TSH 0.008. no eye disease or neck lump. Have small benign nodule. My heart rate is raised –but not bothersome.
    I’m gaining back some weight–more energy now—and eating dairy I’d avoided to reduce iodine in food. Doctors said eat normal diet, and the GDATF person on phone said just don’t eat kelp and seaweed.

    Why do some doctors seem to prefer ATD? Do some patients fear radioiodine, so tolerate side effects and relapse? How did you doctor explain it?

    Kimberly
    Online Facilitator
    Post count: 4264

    Hello – A reminder that I’m a fellow patient. This decision should ultimately be made between you and your doctor, taking into account your personal preferences and your medical history.

    My personal experience is that I took antithyroid drugs for seven years. I was literally leaving for vacation the day after I got diagnosed, so my doctor sent me on my way with a prescription for methimazole. I responded quickly to the meds, so opted to *not* do RAI. After 7 years, I weaned off & stopped the meds (under a doctor’s supervision) and had two years of stable labs. Then over a period of 2-3 years, I went hypOthyroid and had to start taking replacement hormone. That’s *not* the usual course of the disease – I believe it’s only around 10-15% of patients. Side effects with ATDs typically occur during the first 90 days, with *one* exception – vasculitis – that can occur with longer-term use.

    An old fashioned “pro and con” list can be helpful in sorting out your thoughts. When you read peoples’ experiences on the Internet, keep in mind that the vast majority of people posting are those with negative experiences – *and* a lot of the sites out there are not moderated, so people can post less than credible information.

    Sometimes, there are factors that will help you predict someone’s reaction to treatment. For example, we know that patients with extremely high antibody levels, extremely high thyroid hormone levels, and current smokers are at higher risk for worsening of eye disease after RAI. But unfortunately, doctors can’t predict every scenario. It’s one of the things that makes Graves’ so challenging.

    I will dig up & post the American Thyroid Association guidelines regarding quality of evidence. Where you find areas of conflicting recommendations, please discuss these with your own doctor, and rely on their expertise.

    Reluctance to do RAI comes primarily from concern over worsening of eye disease – as well as some patients wanting to try for remission before choosing a permanent option. But other patients do go straight to RAI or surgery, and are happy with that choice. Again, ultimately, this is up to you and your doctor. If a second opinion might give you some piece of mind, perhaps your primary can try and get you a referral to another endocrinologist (although sometimes wait times can be long for new patient appointments.)

    Kimberly
    Online Facilitator
    Post count: 4264

    From the American Thyroid Association regarding their guidelines:

    “The balance between benefits and risks, quality of evidence, applicability, and certainty of the baseline risk are all considered in judgments about the strength of recommendations (7). Grading the quality of the evidence takes into account study design, study quality, consistency of results, and directness of the evidence. The strength of a recommendation is indicated as a strong recommendation (for or against) that applies to most patients in most circumstances with benefits of action clearly outweighing the risks and burdens (or vice versa), or a weak recommendation or a suggestion that may not be appropriate for every patient, depending on context, patient values, and preferences. The quality of the evidence is indicated as low-quality evidence, moderate-quality evidence, or high-quality evidence, based on consistency of results between studies and study design, limitations, and the directness of the evidence. In several instances, the evidence was insufficient to recommend for or against a test or a treatment, and the task force made a statement labeled “no recommendation.” Table 1 describes the criteria to be met for each rating category. Each recommendation is preceded by a description of the evidence and, is followed in some cases by a remarks section including technical suggestions on issues such as dosing and monitoring.”

    https://www.liebertpub.com/doi/full/10.1089/thy.2016.0229

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