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#1 June 12, 2018 12:30:44

beauty2010
Registered: 2012-03-24
Posts: 23
Profile  

RAI or surgery

Hi
I have had Graves for 10 years and have had four relapses so I need to have definitive treatment
I am trying to weigh up RAI and thyroidectomy. I dont have a history of TED but have noticed my eyes can look asymmetrical especially before a relapse. I am a non smoker. I don't have a big goitre.
I think that most doctors would recommend RAI in the first instance in the U.K. but I am concerned about risks of de novo eye disease and am veering towards thyroidectomy although there are obviously concerns about laryngeal nerve palsy and hypoparathyroidism
I would really welcome any advice. I feel like a really fussy patient having waited this long and being indecisive
I am a 53 year old woman so I am not concerned about pregnancy and my kids are grown up

Thanks
Sarah


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#2 June 12, 2018 18:51:18

Liz1967
Registered: 2014-02-25
Posts: 248
Profile  

RAI or surgery

I had thyroidectomy nearly 5 years ago. Surgery easy, no problems, no issues with replacement hormone. I feel exactly as I did preGraves. I had severe TED so RAI was never considered. I had thyroid removed six months after Graves diagnosis. No regrets. If your surgeon is experienced, should be no laryngeal or parathyroid issues. I had surgery at 11 a.m., back home by 4 p.m. on a Friday, out to lunch and shopping with a friend on Monday.

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#3 June 13, 2018 07:32:44

barbra
From: Hagerstown, MD.
Registered: 2013-05-23
Posts: 158
Profile  

RAI or surgery

Hi beauty 2010,

I was diagnosed in July 2013 and had RA. Aside from the week long diet before and the 4 days of seclusion afterward everything went well. Except, finding the right dose of Synthroid and some other meds was almost impossible. Hormone levels were constantly swinging up and down.
Two nodules started growing on my now-dead thyroid. When they interfered with sleeping and breathing an ENT did a total thyroidectomy in August of last year.. Like Liz1967 said, the surgery was no problem, I went home the next morning. Very little pain, no complications and I was back to my old self. The scar was almost invisible a month later and I have been stable on 75 mcg of Synthroid ever since. I take some calcium/vitamin D3 supplement and that's it.
My visits with the Endocrinologist are now spaced one year apart.
Had I been aware of a TT in 2013, I would have had it done to start with, but I was never given that choice.

I wish you the very best. Be informed and make the best decision for yourself.

Hugs.
Barbra.


I'm a little wounded, but I am not slain; I will lay me down for to bleed awhile. Then I will rise and fight with you again.
J. Dryden

Edited barbra (June 13, 2018 07:37:06)

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#4 June 25, 2018 16:35:05

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 139
Profile  

RAI or surgery

Having RAI increases your odds of getting TED, but you can still get it even if you have a TT. My TT was 2 1/2 years ago, and I didn't have a choice because I had a suspicious tumor that was choking me. Fortunately, it was benign and everything went perfectly - no complications. Since my TT, I've occasionally had some very minor TED symptoms. They aren't obvious to anyone else. I'm in the very unusual situation of having a TSH that remained suppressed after my surgery, so I've actually been classified as hyperthyroid all this time. After 5 dosage reductions, my TSH is finally normal as of my recent labs.

If you're already experiencing some asymmetry, I don't think I'd take any chances with RAI. It really is important, though, to find an experienced surgeon for a TT.

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