[Bobbi]

#1067231

Her doctor would need to know about the flight home issues, if for no other reason than to give her a signed note to hand to the TSA officers screening passengers. It doesn’t happen often, but at least one person posting to this board in the past set off the radiation detector at their airport. It was recommended at that time that recent RAI patients get a note explaining the treatment. Whether it is OK to be on a plane with others that soon after RAI is also the doctor’s call.

Being hyperthyroid is truly awful on the body. She has to get the proper fix as soon as possible, whatever that fix is. It’s one thing if the ATD is working well, as you have apparently experienced. But since that is not the case with your daughter, she is wise to pursue another course of treatment. While we are hyperthyroid we lose bone and we lose muscle. The heart is muscle. You don’t want her heart weakened. And losing other muscle LOWERS our metabolism so that we cannot eat as much without gaining weight. Typically, effective treatment for the hyperthyroidism, over time, causes weight issues to normalize, but there is an initial rise in weight typically. But we have to work to regain strong muscle — by exercising once our doctors clear us for that.

I have never heard of the scan lowering, permanently, thyroid levels. If the fix were that easy, we would all love it. The scan iodine is a different form of radioactive iodine, which exists for an extremely short period of time. And, the measured dose is small. It does not damage thyroid cells. So, no, don’t cling to that possibility.

[babs]

#1018802

So – after watching my 20 year old struggle for the past 15 months with being very hyperthyroid and miserable she will be "drinking the Kool-Aid" on Wednesday. She has been taking Methimazole (when she remembers to, since she is a busy, frazzled college student…) since her diagnosis and it just isn’t doing the trick – probably complicated by her having Type 1 diabetes. Metabolically her body is just so out of whack right now. In her first six months after her Grave’s diagnosis she gained 20 pounds – from the Methimazole maybe? Did this happen to anyone else? She hopes that after her RAI her metabolism – and weight – will get back to normal. Thoughts, experiences about this?

I was diagnosed myself with Grave’s a year before my daughter and took a "wait and see" approach while I considered my options. And my levels just started dropping on their own. I have often wondered if this was somehow the result of my uptake scan. Is it possible for the small amount of iodine ingested for the uptake scan to have an effect? Maybe it was just coincidental that my levels dropped after my scan. Has this happened to anyone else? I wonder if my daughter should have her scan this week and then just wait a month to see what happens – and do the RAI over Christmas -? Now that she has made the decision to do the RAI she is anxious to have it done. But I wonder, too, if she will be okay to fly back to school on Sunday if she gets RAI on Wednesday?

Many questions! Thanks for any insight!

[babs]

#1067232

Thanks for responding, Bobbi. Her doc does know she is flying back to school on Sunday – and hasn’t advised against it. Maybe we should at least ask for a bulkhead seat or something. And thanks for the scoop about the TSA – hadn’t thought of that. She usually has to chat with those folks anyway due to her insulin pump and vials of insulin – so I guess she will be holding up the security line….!

You are so helpful and resourceful, Bobbi! (and did I read that you are also from the SF Bay Area?) – I hope you don’t mind another question – and I’m sure this is explained on here somewhere. Why do some docs test for Total T3 and others test for Free T3. My daughter’s recent Free T4 has actually come down a bit to 2.6 (at one point when she was not religiously taking her Methimazole it was up to 5.4…yikes) . But her Free T3 is 10.3 (and normal is 1.9 to 3.9 -?) – since her doc here at home has usually tested for Total T3 and this recent test was done at school, I don’t have anything to compare this one to. But it sounds pretty darn high…..? So – if either your T3 or T4 are high you are considered hyperthyroid, right? And would feel crappy? Wonder why just the T4 is often tested – and not T3. Oh – and her TSH is "up" to .01, after being undetectable for awhile.

And I know I am very lucky (and weird) to have gone into remission without treatment. My thyroid levels are now normal – for the time-being anyway. I was hoping this would happen for my daughter – she really has a double whammy having to deal with both Type 1 Diabetes and Grave’s….

Thanks again for responding.

[babs]

#1067233

Oh – just saw that it is Ski that is from the SF Bay Area, and not you, Bobbi – I knew one of you moderators was! Thanks to all of you for such helpful and well-informed advice and support.

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