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While looking at RAI, I came across more info for the TT. My endo said that they were rarely performed anymore, but that doesn’t seem to be the case. I have slight symptoms in my eyes and am a little scared of the RAI making it much worse, as I am subclinical. Is this a normal response from the endo, or is TT not performed very often? I would prefer the TT to the RAI for many reasons.
I think it is important to understand that the internet makes things seem more frequent, more common perhaps, than they really are. We see posts on this board, and assume it is the “Graves World,” when it is not necessarily true. We are, here, a self-selecting group that has access to internets and computers, and is motivated toward “support group.” There are many individuals who go to their doctors, get their doctor’s advice and do not show up here. There is more to the Graves World than boards like these.
It is my understanding that our endos prefer RAI to avoid the unnecessary risks that surgery imposes. Those risks are minimized if you live in a location where there is a very good thyroid surgeon, who does lots of these surgeries with a small percentage of complications. But a lot of us don’t live in such places.
It is likely, Amy, that all of us have “some” eye issues. One article that I read long ago from the ATF, stated that with new, soft-imaging techniques our doctors were finding “some” eye muscle changes in the majority of us with Graves. Having “some” changes does not mean we go on to get significant eye disease. People with already existing pronounced eye disease seem to be encouraged, (at least it appears so based on this board — which may not be a completely accurate assumption….see comment above) in recent years, to do either a thyroidectomy OR RAI combined with prednisone. For the rest of us, RAI alone is a viable option.
If I could just chime in here:
At the Cleveland Clinic Foundation there is one doctor that does nothing BUT thyroidectomies. If you PM, I will give you his name. There is such a thing as an “Endocrine Surgeon.” I never heard of that until I went to Cleveland Clinic and I live in NY.
Most of the surgeons here that do thyroid surgery are GENERAL surgeons and they just do everything. I had seen one awhile back and she mentioned how great she was as taking out appendix. I didn’t like that, so if you want someone who specializes in nothing but, Cleveland has the doctor.
My $0.02.
ENT Drs. can also do TTs. From what I’ve heard from people around, TTs are not that uncommon. Patients with thyroid cancer have no option but to have a TT (some I think I read are treated with RAI but not 100% sure) so here we talk about Graves but Graves is not all that is out there when it comes to thyroid problems.
Hope you find the answers you need soon so that you can feel well.
Caro
Amazing how many people have never heard of Graves’ Disease. When I tell people I know that I was just diagnosed last month, they say “Graves?” They never heard of it. I had known since I was a small child what it was. My father was diagnosed with thyroid cancer when I was 10. I learned pretty quickly how that little gland can cause so much trouble.
It is amazing. What I find more amazing is how little some times Endocrinologist know about it. They seem to concentrate more on diabetes.
Yes and that is why I had to go all the way to Cleveland from upstate NY. We only have 5 endos here and all they know if they know anything, is about diabetes. The one I was seeing, I hold responsible for my mis-diagnosis. He also takes care of my husband’s diabetes, gave him the wrong pills to take and last summer, my husband went into renal failure and he spent a week in the hospital here. That’s when I noticed my TSH started to drop.
Don’t know if it was stress or just coincidence.
Wow … I hope that your husband is doing better. Maybe stress triggered it for you. Extreme stress can hurt the immune system.
It’s a funny coincidence because I remember everything getting worse and going to the blood lab. TSH kept dropping to waaay below 1.0
I was having horrendous heat and couldn’t even stand in the sun for more than 10 minutes without blowing up.
I made my decision to finally get to the bottom of things and they found Graves’ disease
You guys are right, out in the world Graves is rare. I spend so much time on boards reading and thinking about Graves it feels suddenly common to me! At my last thyroid ultrasound I asked the technician how often he scanned people with Graves and he said I was the third in his seven years of doing the job.
Thank you guys for the support! I am so confused and worried right now. I know it annoys some on this board that I question my doctor, but I just want to know all my options before I make a decision. Fortunately for me, my doctor actually encouraged me to do this.
Vanillasky, Carito71, catstuart7, I also have been surprised at how many don’t know what Grave’s Disease is. Vanillasky I have a similar story. My TSH levels started to mess up in 2010 when my husband was deployed. It was our first winter in Alaska, too. It got better for a while in the summer of 2011 and went bad again in the winter 2011. In 2012 he deployed again and here we are again with very low TSH levels. I think stress plays a huge role in my GD. I am subclinical, but I have many of the symptoms and it is awful. I am hoping to treat early and avoid worse symptoms. My doctor likes the idea that I want to research everything and says that I have time to do so since we caught it at an early phase. I hope all of you find relief and I appreciate your input. Vanillasky I maybe messaging you about that surgeon. I am going to talk to my doctor about it. -
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