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#1 June 25, 2018 08:03:49

marg_mich1021
Registered: 2018-06-25
Posts: 1
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The RAI decision

Hello,

I just joined this forum and this is my first post. I am 35 and was diagnosed with Grave's in July of 2016, however I have been dealing with thyroid issues since the birth of my first child in 2011. I was on various doses of methimazole for a year until my levels stabilized and stayed off the meds for almost a year. I have just recently relapsed and am back on at 10mg/2 day. The thought of RAI scares me as I am afraid of the life-long struggle to follow, not only with being hypo but with the autoimmune disease itself and the other ways it may manifest itself. If you decided to go with the radioiodine approach, how long were you on ATD beforehand and do you regret your decision? Trying to get a real sense of how things will be without a thyroid :-(

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#2 June 25, 2018 17:39:53

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4062
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The RAI decision

Hello and welcome - Hopefully, others will chime in here, but if you did well on the meds before (levels were controlled, with no side effects), this option should be open to you following a relapse. In addition to meds and RAI, surgery would also be an option, although it's important to ensure you have access to a “high-volume” surgeon. This is NOT a procedure that you want to have done by someone who only does one or two thyroidectomies per year!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 June 26, 2018 20:28:15

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 139
Profile  

The RAI decision

RAI is actually the only treatment I didn't do, so can't help you there, but maybe I can offer some insight from my experiences. I was on methimazole for four years and did pretty well on it. My only issue was a TSH that remained suppressed, but my T4 and T3 were pretty stable. My dose for the last 3 years went from 10 mg down to 5 mg daily, but for about 2 1/2 years in the middle I was alternating 10 and 5 mg. I would have been comfortable remaining on methimazole longer if I hadn't developed a nodule.

My nodule was pretty big. It was a type of tumor that can't be diagnosed without removing it, but the very size of it made it more likely to be cancer. If it had been malignant, I would have ended up having RAI several weeks after my surgery, but fortunately it was benign. I know you asked about RAI, but if you ever have questions about TT, I'd be happy to answer them. I had an excellent surgeon and my TT went perfectly with no complications in spite of the fact that it was extra challenging due to the size of my nodule (7cm) and location (growing down past my collar bone). I've had other surgeries and my TT was so easy in comparison!

Regarding life without a thyroid: It's a little scary to know that I'm totally dependent on a pill for my thyroid hormone, so I try not to think about it. I'm actually better about taking my levothyroxine than I am my other meds. I take my other meds mid-morning whenever I think about it, but you have to take levothyroxine on an empty stomach, at least an hour before eating or taking other meds. Most people take their levo when they wake up in the morning. I tend to wake up very early (between 4:00 and 6:00) every morning and then fall back asleep, so I take mine then. When you take such a crucial medication at a time when you're half asleep, you can't afford to make mistakes so I think most people use a pill sorter for their levothyroxine even though it's just one pill.


Edited emmtee (June 26, 2018 20:30:49)

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#4 June 27, 2018 12:02:00

Liz1967
Registered: 2014-02-25
Posts: 248
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The RAI decision

Levothyroxine has a really long half life, 6-7 days. That means half of it is still in your body 7 days after you take it. Takes about a month for it all to be gone. This means if you forget a dose, nothing will happen to you, you can just take two the next day. I took a double dose one day by accident, nothing happened at all, I just skipped the next day. Noncompliant patients can take all seven days worth at once with no ill effects. So even though you need this med, it is very forgiving, you can easily make up missed doses with no symptoms.

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#5 June 28, 2018 00:25:50

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 139
Profile  

The RAI decision

Yes, when my dosage was reduced from 175 to 150 per day, my endo actually gave me the option of switching to 150 mcg tablets (x 7 days a week) or staying with the 175 mcg (x only 6 days a week). The total mcg for the week in this case was exactly the same: 1050. I opted to stick with the 175 mcg so I could have a day when I didn't have to worry about taking my levothyroxine. It turns out that I worried about it anyway. (“Is this the day I don't have to take it or is that tomorrow?”) If I had it to do over again, I'd just take the 150 mcg every day. I think that's why they have you take it daily - so it becomes a habit and you're more likely to be 100% compliant.

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#6 Aug. 21, 2018 18:13:47

steves
Registered: 2015-06-29
Posts: 2
Profile  

The RAI decision

I was diagnosed with Graves in 2006. I had some exophthalmia, but not too bad, so no need for steroids. I had RAI ablation that December. It went smoothly and was painless, but I took awhile to get stabilized on levothyroxine. After stability, the only difficulty was in taking the pill daily, but it is easy to get into a habit. And I echo that small aberrations to your schedule have no noticeable impact.

I developed TED in 2014, ultimately having surgeries in 2017. The surgeries went rather smoothly. I didn't need pain meds, was up and about in a day or two, and back to work after four or five days. Eyes are back to normal.

The scariest part of it is all the unknown. Research it all and educate yourself. It is not a difficult disease to get through, as they now have the ability to successfully treat most of what Graves throws at you.

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