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  • shakira7
    Post count: 82

    Hello everyone,

    Hope all of you guys have been doing well.

    Once you are off from ATD, how long can you expect to be on a remission?
    Would anyone be available to share your stories with me?

    Here’s my story:
    Sept 2012 –
    I was diagnosed with Graves Disease, non-existing TSH, a very high Thyroid Anti-body receptor. I started off with Methimazole 5mg/day until April 2013.

    April 2013 –
    I became hypo so my endo stopped me from Methimazole.
    Antibody level was still very high.

    June 2013 –
    I went back to Hyperthyroid so my endo put me back on Methimazole – 5m/every 2 days, then after 3 months, he lowered it to 5mg/every 3 days. TSH came back to normal level.

    Summer 2013 –
    I started having TED symptoms – swollen eyelids, undereye bags, and left eye looked bigger due to eyelid getting higher.

    2014 –
    My Methimazole dosage was lowered to 5mg/every 4 days…and at one point it was lowered to 5mg/every 5 days. According to my endo, this is like if i’m not taking anything. Antibody level got lower and lower.
    In summer, I got a mullerorectomy done by an oculo-plastic surgeon.
    My eye looked even as a result.

    2015 –
    I remained on Methimazole 5mg/every 5th day all yr.
    Antibody level became normal earlier in the yr.

    2016 –
    My endo retired in summer but he left me more Methimazole Rx after “arguing” with him that I wanted to remain on Methimazole (I developped a fear that I’d go back to hyperthyroid if I stop this medication.), so I was referred to a much younger endo at my clinic.

    My antibody level has been normal since 2015.

    My new endo is very nice and thorough, too.
    She put me on Methimazole 5mg/every 6th day for 3 months since Sept.

    Dec 9th 2016 – she looked at my white blood count and since everything else has been normal for almost 2 yrs, she decided to stop me from Methimazole. She also stated that basically 5mg/every 5 or 6 day is almost as if I am not taking anything cause it’s such a little dosage.

    So as of , I am officially off from ATD since last Friday.
    I have a lab test in 6-7 weeks from now.
    If everything normal, then she’ll just send me to another lab test in 4 months.
    If anything is abnormal, she’ll have me come and see her.
    She stated that probably my thyroid gland that was overly active just exhausted itself over course of yrs.
    If ever relapse, she is considering ATD in the beginning then possibly RAI.

    I read online, that taking an ATD for a long period of time does not necessary extend the remission period.

    I hope to remain on remission as long as possible.
    If I experience relapse, I am mentally prepared to deal with the reality.
    However, what I do not want to experience again is TED coming back after what i had to go through from 2013-2014.
    I’m sure those who have experienced TED would know how I feel about this.
    Living with an auto-immune disease is one thing…but living with a face that reminds me that I have an illness, is not something I ever want to go through…nor do I ever wish anyone to go through cause it’s just awful having a swollen eyelids, bulging eyes…puffy eyebags.

    BTW, I’m a non-smoker & a 44 yr old female.

    As a worry-wart, I am trying to remind myself to remain positive and “train myself” with mindfulness, so that I don’t spend my Christmas holidays and New Year obsessing about the risk of relapse…etc.

    Hope to hear from many of you out there.

    Shakira

    emmtee
    Post count: 148

    I never experienced remission on methimazole. My endo told me from the start not to expect it, as I had a goiter at the time of my diagnosis. I was on methimazole for four years until my thyroidectomy (due to a nodule). I was on much higher doses: a high of 60 mg per day early in my diagnosis and a low of 5 mg per day for the last few weeks before my surgery.

    I’m just surprised that your endo would suggest that you might have RAI in the future if your remission ends. I would think it would be contraindicated based on your TED.

    scanders
    Post count: 108

    Congratulations on your remission! My understanding is that Graves can be remitting and relapsing. I’ve been off of Methimazole since May, after having been on varying doses since 2013. My TSH is essentially undetectable per my endo, but my actual thyroid hormone levels are smack in the middle of the range. We did taper down to a low dose before stopping. With my low TSH, she thinks there are still antibodies at play, and isn’t sure I’ll be able to stay off MMI. But we know it has worked for me should my levels rise again. (She won’t call it remission, since my TSH has not returned to a normal range yet?)

    I’ve had severe TED with OD and muscle surgery thus far. My endo said because of TED, if I for some reason would be unable to tolerate MMI, or if it were no longer effective, she would not consider RAI but recommend TT.

    Kimberly
    Online Facilitator
    Post count: 4262

    Hello – This is an issue that is VERY individual. Some patients will enjoy an extended period of remission. Others will relapse, and this tends to be more common fairly soon after discontinuing the meds, so definitely be on the lookout for your old hypER symptoms to come back. Still other patients will end up going hypO, which is what happened to me.

    Before I went off of methimazole, I was just taking 2.5 mg/per week, split up into 2 doses of 1/4 tab each. I had about 18 months euthyroid on no meds, and then I went hypo, so now I’m on replacement hormone.

    So long story short, your mileage may vary!

    shakira7
    Post count: 82

    Hello everyone, thanks for your replies.
    emmtee: So did you get your TT done? how did it go? Yes, I am going to say NO to RAI option, or else, I might have to consider finding another endo.

    scanders: I hope you can get by for a long period of time without going back to ATD.

    Kimberly:
    I agree with you…seems like this is really a case by case. I wish I can find an endo like yours who were able to put you on a 2.5mg per week. I was taking 5mg every 5th day…and my first endo (before he retired) kept telling me it’s too small that it won’t have any affect.

    I am happy for you that you didn’t experience a relapse.

    Like I said, my main concern here…is not so much of relapse…but not going to TED ever again.
    No one knows how much I suffered with TED.

    I’ll try to remain positive.

    emmtee
    Post count: 148

    I had my TT done a year ago. I was doing okay on methimazole and would have stayed on it longer, but my nodule was quite large and suspicious for cancer. Fortunately, it was benign and my surgery went very well. I had a really good surgeon and no complications.

    I had a little bit of an eye issue over the summer when I was hyperthyroid for a while. (I needed my dosage of levothyroxine adjusted). I was having a lot of tearing and redness, and even a little pain, particularly in the left eye. After my T4 became normal again, it gradually went away and is completely gone now. The only other eye issue I’ve had was some eyelid retraction in my right eye early in my diagnosis when I was hyperthyroid. (I’m a 52 year old female non-smoker).

    Liz1967
    Post count: 305

    I had TT done six months after starting methimazole due to my rapidly progressing TED. TT appears to stop the progression of TED within a year, in my case six months. I was able to start the reconstructive eye surgeries sooner as it burned out rapidly after TT. The TT itself was easy, no problems and rapid recovery. I have been on levothyroxine for over three years, managed by my internist’s nurse practitioner, labs yearly. I feel totally normal. My residual eye symptoms are due to damage done early in disease and surgeries and are nonchanging i.e. I have no variation due to hormone levels, antibodies, etc as levels are stable and antibodies are no longer in play.

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