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You are correct, it does reduce the vascularity before a thyroidectomy. But is nothing you should self prescribe, and I hope it is not readily available on the internet. The ramifications are big. If you have a thyroidectomy scheduled now, and the surgeon has not prescribed it, call and ask him/her why and what thinking is. Generally, it is prescribed very close to the days before the surgery date.
in reply to: Risks of Strabismus Surgery #1184613Liz pretty much summed up my experience. Plus remarks by Kimberly.
I had no apprehension and no worried about this procedure. It is super easy from the patient experience view. This is usually done by pediatric ophthalmologists, for this is a common enough surgery in kids.This surgery, of all my surgeries, was so so so wonderful. Double vision kept me from so many things, like reading and driving. Sometimes there is a need for a tweaking of the surgery if not mono vision all the time, but the is easy too.
This surgery was the one that helped me realize that I would have a normal life again. Even better, I had immediate single vision,same day.
in reply to: TT and eye disease symptoms #1184583Just realized I began Synthroid replacement in 1986. So it was a bit less than 30 years between subtotal thyroidectomy and TED
in reply to: TT and eye disease symptoms #1184582Yep. I made a mistake in my post. They did leave a teeny tiny bit of thyroid tissue, but that was in 1959, and I did not develop TED until (I think it was ) 2008. After the 1959 surgery, I was euthyroid for about 35 years..meaning I did not need antithyroid meds or did I need thyroid hormone. I think their thinking was that since my thyroid gland was so busy cranking out thyroid hormone, and making me hyPERthyroid, that if they almost all of it out, it would be “just right!” Just like the three bears, bed too hard, bed too soft, and just right!
This prompts me to ask the frequency of TED in folks who have had TT’s. Any studies on that, Kimberly?in reply to: TT and eye disease symptoms #1184580To green:
I got eye symptoms and TED 50 years after my thyroidectomy. So, for me..no.
TT did not affect my eyes one way or the other. Ever.
TT see above answer. Did not impact eyes in any way
TT did not affect TED, since there were 50 years between the two.That is my experience.
So I am an anecdotal story which illustrates there is no relationship between TT and TED. I do believe that a person with Graves’ is more likely to have eye symptoms and TED that a person without Graves’ disease.Shirley
Just my opinion.
Regarding the study that antibodies decreased after TT, there is a lot more to know about that NIH study. Labs are one thing. Our range of symptoms are another. In my experience, I had TSI labs pretty much to confirm what we already knew…that i had severe TED. What we care about as people who have the eye issues, are the ranges of symptoms of TED and how it affects our lives.in reply to: I hate Graves Disease #1184567Sandy, I just logged in…was dealing with all of the when AzGravesGuy was active. So a big hello to him!
I chose surgery, a thyroidectomy, and it was one of the very best decisions I have made in my LIFE! AS others have said, you need to be sure you find a surgeon who “does” them with regularity. My understanding is about 50/year is a good number. You can ask them, they will tell you.
I am someone wanted to move on with my life, so “when in doubt, get it out, ” fit well with my general philosophy
I have neve regretted it, could hardly WAIT until that surgery date. You need a bit of help after surgery, one week works, two is better. I take Synthroid, have labs now and then, and it’s all good…really!
I am puzzled that you say you know so many people who have had this surgery, and have had bad results? “Really????”
Dunno. I don’t know anyone, ever, who is worse than before.
I was so so so so glad to have it done. I have never looked back, except with gratefulness that i did it as soon as I could.My two cents! I had all your symptoms. It seem you will NEVER be ok again. But you will be back to your old self with intervention. All of this is up to you, it is your decision. I wish the the best. It is hell to feel like you are feeling.
Shirleyin reply to: GD with TED #1184528Again, echoing what Liz said. It is SO tempting to do the double vision asap, cause it is hellish to have, but waiting until “your eyes stop changing” is the thing to do. I remember,vividly, wondering,
“how in the hell will I KNOW when my eyes stop changing!!??” Wish I had a good answer for that.
I do know that strabismus surgery should come after OD, after all the healing has occurred, if you have an orbital decompression.
And of course since eyes are constantly changing I ended up being the parent of multiple pairs of glasses with new prescriptions…..
BUT you will get to the end of all all of this. REALLY. I thought it would never end.
Now, vision is fine with correction with prisms, and I MUST have eye drops with me at all times, and sun glasses everywhere. Very photophobic. Good thing I live in SEattle!in reply to: GD with TED #1184525Mojon I agree with all Liz said, and I had similar experiences. “I saw a neuroophthalmologist, strabismus surgeon and oculoplastic surgeon in addition to general ophthalmologist and have had a variety of surgeries, steroids and radiation.”
Definitely true to find the docs she mentioned. I did not wait that long for my strabismus surgery for double vision. I had double in every direction except looking straight down at my shoes. I also chose a thyroidectomy. My eye symptoms, TED appeared decades and decades after my Graves!
I did have Rituxamab. Insurance covered it. Did not help or make a difference.
Kimberly provided a lot of solid information for you. Just be sure to determine that the surgeons you chose have done a large number of the procedure you are having. You will find that many endo and eye docs do not understand Graves. Keep going until you find the right folks.
The videos are great, glad you watched them!
Shirleyin reply to: Is it normal to alternate dosage like this? #1184510Ellen, Block and Replace is mostly used in England, possible other places in Great Britain. Not sure about Europe, think not. Not used here. Of course, entirely possible, that someone, someplace in the U.S. may have used it, but it is not the Standard of Care here.
in reply to: On Week 12 and very discouraged #1184490Hi, your eye symptoms all fit having TED, thyroid eye disease, along with your new Graves. Not fair, I know. I can tell you with years of experience behind me, that most eye docs (ophthalmologists, (not optometrists…and they are not trained as ophthalmologists. ‘
‘BUT my point is that most eye docs who are MD’s, do NOT understand thyroid eye disease, either because of disinterest and/or choice. They don’t get it at all. The doc you need to see is a NEURO-OPHTHALMOLOGIST. Liz mentioned some good temporary measures, I believe, eye drops, many of them. If your eye does not close at night because it is bulging, tape the lids closed. Use sun glasses if the sun bothers you If you have severe TED, there are many steps and possible surgeries to help you. If you have mild or moderate TED, you can probably slug through it with comfort measures.
You need to realize, though how important it is for you find and see a near-ophthalmologist. They can do baseline tests that will help you and the doc evaluate your progress or regression of the disease. When the eye is bulging, the eye MUSCLES are also swollen, it is quite crowded behind the eye, so pressure on the optic nerve is a serious event, and can cause eye changes, blind spots, , and even blindness that is permanent can result if untreated.
Can you find this kid of doc? Sounds like you have done all the right thing with eye docs with poor results finding the right kind. These docs are generally in a larger city and you are more likely to find docs who understand TED if you are near a major medical center. As you can see from my history on my post, I have been there, done all of it! But I have vision, can read, can drive and I do not see double (which made me crazy )Re weight, it is typical when you are first hyPER, to lose weight. It is equally typical to regain it and sometimes more, while you are getting to the right spot with methimazole. It is tough thing to have, with a job and three kids, not to mention Graves and TED are both very stressful and hard. All will get better. We want it all to happen right now, but it doesn’t. But you WILL be back to your normal self with treatment. True! Really!
shirleyin reply to: Is it normal to alternate dosage like this? #1184505Not strange at all! I have done the same thing for years, depending on me, and how I feel, plus labs. Remember just cause pills come in certain dosages, it just might not –and frequently is not….especially with thyroid and warfarin…so doses may vary in a week. that is practicing good medicine!
Shirleyin reply to: Newly diagnosed and confused #1184472agree with Liz and Kimberly. That is a nutty thing to say over the phone.
Hard to know the meaning of your labs without knowing the ranges. Labs differ,and are calibrated differently.
Get more information. Important to do. At your age,and any age, untreated hyperthyroidism is also a risk for atrial fibrillation.You cannot really make a good decision without accurate information =which you sure do not have at this time. It is very possible you could be in the’watch and wait”category. There is no crisis with any of this, and you have all the time you need to thoughtfully make the right decision for you. Step 1, get the lab information, pay attention to how you are feeling. If your heart rate gets pretty darn rapid, 90 or more, that is a reason to check in with the doc @ a beta blocker. Check your BP too.
I am a healthy 81 year old, who had Graves when i was 21. Feel free to PM or even call me if you would like. I did have a thyroidectomy and ultimately began taking Synthroid. But I was REALLY HYPER, with all the classic symptoms.
Green, of course what you think about thyroidectomy and your voice are very important. Followed by the fact that if you don’t do the surgery, you don
‘t have the concern. I’d like to share with you that I sing in two choral groups, and there are at least 20 women I know personally who had thyroidectomies, and there was no significant change in anything. Myself being one of them.We have noticed, however, unrelated to Graves, that as we get older, our voices are lower, and it’s hard to have women who are still comfortable with the soprano range!
Ellen, please read the Mayo Clinic site,and other reputable sites, about giant cell arteritis. You will see the treatment is steroids, to prevent vision loss.
I think we are not welcome to morph into the field of medicine.To green123
Ask your doc these questions, maybe he/she might be willing to prescribe a short time sleep aid during the time you are taking steroids.
In my own experience, steroids ramped me up a bit so you feel like you have boundless energy. i did feel very hyper, and slept less well.
I had no directed tests because I was on steroids either before or after the steroid bursts. I had oral prednisone for 5 days,with dose decrease each day,
and I had IV steroids to reduce pressure on my optic nerve because of the enlarged eye muscles pressing on the optic nerve-prior to having an orbital decompression.
Shirleyin reply to: can’t decide- IV steroids or oral #1184432Flora, thank you.
As a complete aside from eyes and neck, I want to tell you that I just spend four wonderful days in Vancouver! What an amazing city! Sooooooo beautiful!
Not sure where you are in Canada, but if you decide to visit, PM me, and I will tell you where to find really good food.I sure hope you NEVER have an eye issue. I struggle with trying to decide which impacted my life worse. Eyes or Graves. I think TED “wins.”
Shirley -
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