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Old 01-14-2013, 02:52 PM   #1
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URGENT: Should I go through with RAI or should I stay hyperthyroid?

Hi all,

I'm scheduled to go through with RAI tx on Friday morning for Graves' disease/hyperthyroidism. I've had hyperthyroidism since I was about 16 (I'm 22 now) and it's been reasonably well controlled -- I've had a few tweaks in medications here and there, but I've never exceeded 20mg of methimazole per day; I just switched to 10mg per day last month, though I'm completely off medicine now as I await my RAI.

I'm just getting super nervous right now, and I'm not really getting any answers from my endocrinologist. I'm reading that I won't be able to eat a lot of different foods, like cruciferous veggies, strawberries, peaches, walnuts, peanuts, and so much more. I've also read that I need to drastically reduce my consumption of bananas, certain fibers (at least until 4 hours after medication), and the like. As a dairy-free person, I KNOW I will not be able to get enough calcium in my diet as a result of this, and I would really like to avoid supplements. Also, I am aware that some studies suggest that hyperthyroidism increases your risk of ovarian cancer by 80% -- but as long as my levels are controlled, wouldn't that risk be mitigated? Same goes for muscle mass, etc.

I do have a repaired atrial septal defect/repaired mitral valve, but my condition has been very well managed and my heart, by all accounts, is perfect. I'm going for a checkup with my cardiologist on Wednesday, too. I know hyperthyroidism can be dangerous in terms of racing heart, etc., but I really don't have those symptoms (if I do, it's incredibly rare and all of my doctors are immediately aware of it). I'm just wondering if staying hyperthyroidism may be a better option for me, considering that my levels are well-controlled and I'm feeling well as opposed to going into hypothyroidism and drastically having to change my diet?

I just put in a call to my primary care physician, so I'm hoping to hear back from him later tonight. Until then, advice would be greatly appreciated!! Thanks!

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Old 01-14-2013, 03:16 PM   #2
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Re: URGENT: Should I go through with RAI or should I stay hyperthyroid?

UPDATE: I just spoke with my PCP (and, granted, endocrinology is not his specialty), but he said that he's never heard of anyone having to radically alter their diets for hypothyroidism. Rather, he would adjust the dosage of the medication to fit my lifestyle. So, I still can eat all the foods I listed above and I may just have a slightly higher dosage of medication. He said that, much like people that are on anti-coagulant medications, he advises them to NOT change their diets and instead he adjusts the dosage of their medications to fit their lifestyles.

Old 01-14-2013, 03:25 PM   #3
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Re: URGENT: Should I go through with RAI or should I stay hyperthyroid?

Hello there,

I should be long asleep (midnight over here ) but shortly want to get back at you already.
First of all my advice would be postphone RAI, please read around on the board (you can use the search function - posts from Sammy64 to name just one would be very useful). as you'll read RAI has many side-effects such as permanently hypoT but also increased risk for TED (thyroid eye disease).
Next to that a doctor who does not know how to dose properly before RAI wont know it either after (it becomes even more difficult afterwards due the rise in antibodies and their effect on TSH and most doctors being blindsided with TSH).

That being said, if you're properly managed on medication I don't understand why you'd need RAI. how are your antibodies these days? where those even tested?
standard is: start antithyroid drugs (such as methimazole); decrease the dosage once levels fall within normal ranges, dosing shoudl be done based on FT4 and not TSH and then maintaining dosage should be the lowest dosage possible keeping FT4 in the upperquarter of the ranges.
I know this is no longer of any use for you, the reason I mention this is, because 1) it might give you an idea whether you were dosed like that (which I doubt) since 2) if properly dosed the remission rate is very high (in order for that to happen it's important to keep FT4 high enough and avoid hypoT (i FT4 drops too low one becomes hypoT and that triggers antibody production). for remission to happen antibodies need to be low/decrease or gone.

At this point you're not hyperT (highly doubt it) so it's not a matter of remaining hyperT . a person has Graves and that can cause hyperT (too much thyroid hormone in the body) once properly treated, a person still has graves but is no longer hyperT. once in remission or when levels are at a good place, a person still has graves but no longer hyperT, in case of remission although one still has graves, treatment is no longer required.

hang in there and hope this helps some.

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