[nmasay]

#1070840

Ying,
I sent you a PM (personal message) with some ideas for places for surgery.

[Ying_He]

#1019320

Hi everyone,

I am a prolong Graves Disease patient and has been reading and checking this wonderful site all the time, I am her to ask for help.

I was diagnosed as a GD patient 11 years when my daughter was one year old and be on the Methimazole on and off for 5 years. In the first a few years, the small dosage (5or 0.25 mg) of MMI was able to control my disease, but now it seems getting harder as my antibody jumped from 30 to 50 recently

I gradually also developed an eye problems, but no double version. The symptoms of red and swollen were the worst conditions, but they normally improved as my thyroid condition getting better. I have been visiting my ophthalmologist and endoc. for many years to ensure everything went well, and now we all feel it is time for me to move to other treatment.

My endoc. doctor prefers surgery as I have pre-existing eye disease, and opthaimologist extremely agaists RAI. Based on m very limited knowledge, surgery carries a few risks, but should not worse my eyes conditions, is that right? I also was told finding a skilled surgeon is extremely critical, is anyone can refer me one. I am living at Salt Lake area, but I may able to have a surgery done out of state if it is necessary.

I apprecaite for any responses.

Ying

[mamabear]

#1070841

Welcome Ying!
I don’t have any answers for you. I did want to say hello and welcome. You will get more posts as others come in and see your post.

I hope you find a great surgeon !

[Ski]

#1070842

It’s true that finding an experienced surgeon is important ~ one of our speakers once said that surgeons can be under the impression that this surgery is "simple," but in fact the structures are very delicate, and small mistakes can make a big difference to the patient afterward. I don’t have specific knowledge of a good surgeon in your area, but the critical questions to ask are 1) how many of these surgeries does the doctor perform in a year? and 2) what is the percentage of complications his patients experience? If the surgeon is unwilling to pass along this info, CHECK PLEASE, move on to the next possible surgeon on your list. You may be able to find a good surgeon through referrals from either your endocrinologist or your ophthalmologist, they may already know of someone they trust.

[Mommy]

#1070843

Hi Ying,

I am sorry you have been struggling with this for so long. My 3 year old daughter had a total thyroidectomy in November. She has TED as well. You are right, the research shows that often the eye disease worsens after RAI treatment. That does not seem to be the case with surgery, I don’t believe. I understand you can still have it (she does) but it hasn’t worsened.

Her surgeon was Dr. Orlo Clark at UCSF in San Francisco. He was amazing. I would be happy to answer any questions you may have. I wish you the very best.

Take care,
jennifer

[scubarn]

#1070844

Dr. Orlo Clark has since retired.
I had my thyroid out Feb 5th by a trusted surgeon I work with. It was recommended to me by my Endo to have a total thyroidectomy.
RAI was out since I have the eye disorder.
He said it is easier to stabilize thyroid hormone levels with the proper dose of thyroid hormone replacement (that the body can recognize), rather than trying to suppress excess levels of thyroid hormone being unnaturally released by taking PTU or Methimazole. You can’t measure how much extra thyroid hormone is being released daily due to antibodies attacking your gland, but you CAN control how much thyroid hormone goes into your body once the gland is removed.
My endo & surgeon stated that a partial thyroidectomy is not the best choice since a sick thyroid is not going to function any better if half is removed, PLUS a second surgery is much harder and dangerous. (Higher % of complications).
My surgeon informed me that he finds cancer upon removal of a sick thyroid in a significant % of Graves patients which was a surprise to hear. My case was no different. No cancers were seen on ultrasounds, labs, or exams, but 2 types were found post-op on the pathology report. It was wise then that I opted for total thyroidectomy. I would have hated to have a second surgery after the pathology findings. This way we got it all out.
I got very ill after being on PTU for 8 years. I am now 4 months post total thyroidectomy. I was so ill for so long that I did not know what normal felt like. It took 3 months post-op to feel the turn-around. I am not 100% but I feel so much more "normal".

[kaicee118]

#1070845

I also had surgery (4 weeks ago), and mostly opted for that because I had eye issues as well. So far so good, although I do have days when I feel abnormally exhausted.

That’s interesting what you said, Scubarn, about cancer – I never thought about that for a second until I went for my post-op appointment and the surgeon said, "So here’s the pathology report." Luckily there was no cancer – but the pathology of the thyroid was consistent with Graves. I asked about that, and the surgeon said, "As soon as I open someone, I can tell a Graves thyroid from a non-Graves thyroid." I asked him if it was the size and he said no – just the way the tissue looks. I found that interesting.

But anyway, the surgery itself is not bad at all. I’m glad I did it. I just don’t know when my eyes are going to get back to normal.

Best of luck,
Karen

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