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in reply to: teenagers with graves ? #1067199

Oh – just saw that you were diagnosed this past summer in June -? Was thinking that you meant a year ago. So I can see why your docs want to give your meds a try – it hasn’t been all that long – relatively. I’m sure it seems like ages to you. Hang in there…..but do ask about other options for treatment. Sounds like you are having a rough time….

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in reply to: teenagers with graves ? #1067198

My daughter is a teenager, too – or was until recently, I should say – she just turned 20. She was diagnosed with Grave’s in the summer of 2008 – and has been on methimazole since then (when she remembers to take it…). She will have RAI in two weeks. Have your doctors talked to you about this option? From what I have read – and someone please correct me if I am misinformed about this! – it is less likely that teens will go into remission on medication. Not sure why doctors would try meds for such a long period of time if you are miserable and have so many symptoms. You should ask them about RAI and surgery – the two other options for treatment. Keep us posted on how you are doing.

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in reply to: HAD RAI Treatment at 9am Today #1067206

Yeah for "so far, so good!" Would love to hear updates on how you are doing – hope you continue to feel great! My daughter will be getting RAI in two weeks. Do you know what dose you got? And what your uptake was? Is it a relief to have it over and done with?!

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in reply to: RAI Dosing? Please help! #1067229

Thanks for your quick responses. And glad to hear that you are doing so well post-RAI enough3 – my daughter, too, has had "enough" after a year and a half and is ready to take this step – just doesn’t want any more radiation than is necessary. I know it isn’t much compared to cancer patients – but if others are having success with 15 mCi (as research has also shown) – I don’t see why 25 would be a fixed dose.

Wish we had more faith in this Nuke doctor – but we just don’t….I’m sure he knows what he is doing – and probably is just not used to people being informed and questioning him. And yes – I saw that they marked on my daughter’s neck so that the size of her thyroid could be seen on the scan – but he wasn’t able to tell us anything about the size when we asked – it was weird. Almost seemed like he just saw the 91% uptake and didn’t really look at much else about her scan.

Thanks again for your comments….

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in reply to: Countdown to RAI….. #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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in reply to: Countdown to RAI….. #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.

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in reply to: How can I be more supportive? #1074357

Grave’s mom – I just sent you a private message as we are dealing with the very same situation!

My nineteen year old also has both Type 1 diabetes and Grave’s disease. While the advice here has been good so far, I really have found noone yet – endocrinologists included – who really understands the impact of having these diseases together – how hyperthyroidism impacts blood sugar control, how thyroid meds affects insulin absorption, etc, etc. Having these two diseases together impacts the sufferer exponentially – and advice for someone dealing with Grave’s alone might not be exactly on target. Maybe we could start a message board for those who are dealing with both diseases?

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