Viewing 7 posts - 1 through 7 (of 7 total)
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  • Ski
    Participant
    Post count: 1569

    Congratulations! I’m glad your symptoms are starting to improve, it makes all the difference when things start to look a little better each day instead of worse.

    By the way, if you are interested in continuing to take Tapazole to manage your levels for a longer period of time, you should be free to make that choice. Usually I hear figures of at least a year before patients stop taking it to see if remission has occurred ~ give the body some time to get back to normal, to heal, and then check for remission. Your levels are near normal now (and TSH does usually lag behind, it’s actually more of a "running average"), but that only means that your body is finally getting the chance to heal from the onslaught of hyperthyroidism. A very low level of ATD is usually all that’s needed, once your levels are back in the normal range, to keep them there. If your doctor pushes to take you off the meds earlier, and you are not comfortable with that, speak up! Our doctors need to be team members, not "the boss of us." <img decoding=” title=”Very Happy” />

    Oh yes, one more thing ~ when you DO eventually stop taking the meds to see if you’ve attained a remission, you can still choose to go back on them if there is no remission. It’s not a given that the next step is RAI. Many people worldwide have used longterm ATDs to manage GD. It’s ALL up to you, barring any other reason to avoid one or another treatment.

    Diane94
    Participant
    Post count: 13

    I have heard that you can’t stay on the Tapazole long term because of side effects that it can cause, is this true? Or can I go off for awhile and then go back on and then I’m at no more of a risk than someone that is just starting it?

    My endo did say to that we are looking at least another 6 months because that it would take time and that when I orginally went on it that it would take about a year and a half before we really knew if the medication would work. So far he seems to be upfront with me and honest on the fact that there is no "instant" fix for any of these and I just need to learn to be patient, which is not always easy:) I’m having a little more hope now though than I did before which I’m very thankful for.

    Diane94
    Participant
    Post count: 13

    Hi everyone!
    Just wanted to update everyone on where I’m at in my treatment. I started on Tapazole in December and had blood work in January and Feruary. In January my levels were: TSH less than .01, T3 5.4 (2.4 – 4.4 normal) and T4 1.6 (.62 -1.81 normal). In February my levels were: TSH less than .01, T3 3.6 and T4 .81. The endo was happy to see my levels in the normal range even though the TSH is not. He said that he wasn’t as concerned with that because that takes longer to catch up to the others. I have started to cut back on my Tapazole from 20mg per day to 10mg. Eventually I will be going off all together to see if my thyroid can maintain on it’s own. The endo does not think this will happen and I will have to have RAI done. I’m feeling much better than I did, not as much of the muscle aches and sleeplessness. I think the hair loss has slowed down too <img decoding=” title=”Very Happy” /> I have finally been given clearance to have surgery for my ovarian cyst that I’ve been dealing with for the past 6 months because I had not been given clearance to have surgery due to the thyroid issues until now. I will be having that done next Friday, the 6th. I’m still stuck in a sense of limbo with things but I will take this limbo any day over the way I had been feeling. I can deal with issues much better now that I’m not feeling so worn down all of the time. Don’t get me wrong, I still have my bad days but the good days are starting to out number the bad Yeah!! Hope this find all of you well and thanks so much for all the help and direction.

    DianneW
    Participant
    Post count: 292

    You can stay on Tapazole long-term, as long as you can be managed with a small dose. A recent study done by the European Journal of Endocrinology comparing treatment with RAI to methimazole over a teh-year period found that the safety and effectiveness are comparable. Dr. David Cooper did a review article on antithyroid drug treatment in the New England Journal of Medicine and his opinion also is that it’s safe. If anyone wants these articles for their doctors, email me at dwiley@Q.com

    Side effects are always possible when you are taking ATDs, but they’re less likely on a small dose. If you were still taking the ATD when you became elderly you might want to reconsider as well, since an aging liver might be less able to handle drugs. It’s also quite possible that by that time you will become hypothyroid, since that’s a natural part of the disease process for a high percentage of people regardless of treatment choice.

    partygirl1
    Participant
    Post count: 9

    Thank! That’s what I thought. If there’s a strong possibility that you may become hypo anyway, why not see if GD will go into remission? My endo made me feel like I should just get RAI and be done with it. Should I be concerned with "Thyroid Storm" if I’m on the ATD’s?

    DianneW
    Participant
    Post count: 292

    Many endos take the position that since many people will eventually become hypothyroid, that justifies having RAI at the outset. I believe this is a personal question each patient should be able to decide for him/herself, and not the doctor’s decision to make.

    Even if hypothyroidism was the eventual outcome, what about the years in between when the thyroid was able to provide normal amounts of hormone? I would be thankful for those years, and in the end would also be glad for a thyroid that could produce even part of my daily needs. A pill taken daily can never do exactly what a person’s own thyroid gland can do; specifically, micro-adjust to changing needs.

    Some people aren’t able to maintain stable thyroid levels during those years, and that’s neither healthy nor comfortable. Under those circumstances it might be preferable to reconsider the options.

    Once your thyroid levels are controlled on ATDs you shouldn’t have to worry about thyroid storm, unless your levels begin to go crazy again. That rarely happens once the levels are normalized.

    partygirl1
    Participant
    Post count: 9

    Thanks Dianne. That sounds reasonable.

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