[LKBallenger April 6, 2013 at 9:14 am Post count: 20]

#1059824

Although I am just the messenger, I can tell you about two success stories. Both my brother and my other brother’s wife were hyperthyroid. Although it took a while for them to be properly diagnosed, both did the RAI. They are both doing well and back to their normal lives. Neither of them ever had any eye involvement (so happy for that). They are both non-smokers as am I.
My only symptom is eye involvement (not happy for that)
I think most of the “success story” people are out living their lives and don’t spend too much time on the blog. Those of us still in the trenches are on the blog with our many questions. There really are people who are functioning very well after the RAI…..not sure what the % is but they are out there.
I am sure that fact has been pointed out before many times. I am just trying to stay hopeful that I will be well one day soon.

[SueAndHerZoo April 6, 2013 at 9:46 am Post count: 439]

#1177999

You are absolutely right about that. I, for one, was first diagnosed 6 years ago and read everything I could find and joined all sorts of forums to gather support and information. Once I became stabilized with Methimazole my life went back to my “before diagnosis state” and I no longer visited the forums much, if at all. I feel guilty for saying that because perhaps I should have continued to read and post and share that I was now “fine” but I really didn’t have much to say once I wasn’t being bothered by Graves any more. And honesty, I don’t think the people who are still suffering with it really WANT to hear from someone who is feeling great and can’t relate to their symptoms and challenges.

When did I join this forum? A few weeks ago when I came out of remission and started suffering with hyperthyroidism symptoms. I’m back on Methimazole and haven’t found the right dosage yet (will do bloodwork and see endo in about a week) but I hope to be able to put this behind me and forget I have Graves Disease within the next month or two. And yes, I will probably disappear from the forum at that time, unless I can find something useful to share with others.

So, good point. There are many, many people with Graves Disease that are living perfectly normal lives but they are not here talking about it. Only those that are struggling right now are here seeking to receive and share information and support. (of course, that doesn’t apply to the moderators – they have to stay very involved regardless of how they feel and I can’t thank them enough for that.)

So for those suffering right now (me included) please know that there IS a light at the end of the tunnel and this disease does NOT have to be a dark cloud over your head for the rest of your life. It only feels that way while we’re struggling to find the solution and some relief, but it IS out there. Patience and an optimistic attitude help a LOT.
Sue

[KimberlyOnline Facilitator April 6, 2013 at 11:14 am Post count: 4294]

#1178000

Thanks for sharing these stories!

Our other two facilitators also consider themselves “success stories” with RAI — even though Ski ended up needing a second dose.

I wish there was some concrete research on this, but my personal experience is that for the most part, the people who do solid research ahead of time and are active participants in their care end up being satisfied, regardless of which treatment option they choose.

If a problem occurs later, they know that they selected that treatment option with full knowledge of the risks.

If a patient is not given the option of all three options — or if the risks are not fully discussed up front — those patients seem to be the most likely to be unhappy with treatment and to lose confidence in their medical providers.

I think the guidance that was released by the American Thyroid Association and American Association of Clinical Endocrinologists has gone a long way towards helping patients and doctors make the best choices possible for their particular situation. (For those who haven’t seen it, it’s the second link in the “Treatment Options” thread in the announcements section). I especially like the section that goes into the patient *values* that might make a particular option more or less attractive.

Hopefully, the next generation of Graves’ patients will be better educated and have better outcomes. (And hopefully, those in this group who go on to become “success stories” will check back in every now and then. )

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