[green123]

#1060757

Hello all,

I have head different opinions on this topic from different doctors. What have you heard and believe to be accurate? And your personal experience?

Does TT not affect the eyes?
Does TT make the eyes better?
Does TT make the eyes worse?
Does TT stop the eye disease from progression?

Thanks in advance?

[Kimberly]

#1184577

Hello – I’m aware of one study out of University of Michigan Kellogg Eye Center that indicated that thyroidectomy could potentially reduce the risk of thyroid eye disease:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://kellogg.umich.edu/news/14/thyroid-eye-disease.html

I’ve also heard a couple of anecdotal stories from patients who saw an improvement in thyroid eye disease symptoms after surgery.

I’ve not seen *any* research that indicates thyroid eye disease gets worse after thyroidectomy.

Of course, as Dr. David Granet from UC Shiley Eye Institute noted at a seminar earlier this year, “when you’ve seen one case of Graves’ disease, you’ve seen one case of Graves’ disease. In other words, your mileage may vary!

[Liz1967]

#1184578

Here is just one study, there are lots more.
The Effect of Early Thyroidectomy on the Course of Active Graves’ Orbitopathy (GO): A Retrospective Case Study. – PubMed – NCBI

http://www.ncbi.nlm.nih.gov/pubmed/27351809

Thyroidectomy shortens the course of the eye disease. Antibodies that affect the eyes decrease in the year following TT. There is another study out of the Univ of Michigan noting TT and statins may prevent the eye disease. Methimazole does not have this effect and RAI can worsen things.

In my case, I had TT about 6 months after the start of the eye disease. My eye disease burned out (stopped progressing) 8 months after TT. This is much shorter than the average of 2 to 5 years for burnout.

There are more and more studies coming out, some even recommending radiation after TT to be sure all the thyroid is destroyed.

[bronx]

#1184579

I was diagnosed with Graves disease in Aug 2015. Although I did not have my thyroid taken out I did have the radioactive iodine treatment and my doctor stated that my thyroid is dead and inactive now. I’m on synthroid and I feel like a million bucks except for my eyes. I have double vision since Dec.2015.

My double vision came about after my thyroid was taken out through radioactive iodine treatment. Why the double vision after the thyroid has be dead not while it was still active…?

Now I had spinal cord surgery that has gone very bad. The day after the surgery my double vision came into play. I blamed my double vision on my spinal cord surgery but all the doctors stated differently and all three said it’s almost impossible. My spinal cord surgeon, my primary doctor, all three of my eye doctors, and the MRI stated my double vision stems from my dear and close friend the Graves disease.

Last month I had eye surgery to correct my double vision and so far all is okay.
But my question is how and why did I get double vision “AFTER” my thyroid was killed and why the day after my spinal cord surgery and not before….?

[snelsen]

#1184580

To 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.

[Liz1967]

#1184581

Subtotal thyroidectomies leave tissue that can cause problems down the road. These were commonly done in the past. Shirley, did you have subtotal? RAI can trigger the eye disease, maybe because it takes months for the thyroid to die, and even then, remnants can remain to trigger antbodies later. So if all the thyroid tissue is not removed, it can be attacked again, and this may be what triggers the eyes. This is why there is some rationale to removing as much of the thyroid as possible surgically, then going back and irradiating to destroy any microscopic remnants, much like they would do if you had thyroid cancer. Who knows, they may come up with something different next week!

Total Thyroid Ablation in Graves Orbitopathy

http://www.ncbi.nlm.nih.gov/pubmed/25740065

[snelsen]

#1184582

Yep. 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?

[snelsen]

#1184583

Just realized I began Synthroid replacement in 1986. So it was a bit less than 30 years between subtotal thyroidectomy and TED

[Kimberly]

#1184584

@Shirley – The most well-known studies (Bartalena 1998 and Traisk 2009) left out thyroidectomy. However, the link that I included a few posts above is from UM Kellogg and found a reduced risk of TED for patients undergoing surgery.

This is also an interesting read from last year from Dr. Bartalena:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4374116/

[Tica3]

#1184585

Hi All,
I just found this site and topic as I have been searching for info on post op thyroidectomy. I am now 6 days post op from my TT. I was diagnosed with Graves this past April 2016 after I noticed my one eye bulging in pictures and I knew it was something to do with my thyroid. Back in 2014 I was dx with hypothyroidism after a long agonizing 5-6 year battle with my health and searching for answers. After finally producing lab numbers that would justify treatment, I was put on Synthroid and it served me very well and I was very happy to just get on with life. Well, it was not to be. Once I noticed my eye (not many other new symptoms), my GP ran my labs again and it showed I was now hyper (after having very stable labs for over a year). I was sent to the endocrinologist and she ran the antibody tests for Graves and sure enough I had it. After learning about all 3 treatments, I was very sure I wanted the surgery. I did have to stop the Synthroid and start methamazole which I did not feel great on but I had to get those numbers down in any case. The eye specialist I visited has not seen any damage yet to the nerves but agrees that my other eye has started to swell and in my “worse” eye, the eye sight has diminished. That scared me more than anything so I wanted the fasted resolution to getting my eyes a chance to go back to normal without more than a possible eyelid surgery. I knew and trusted the surgeon because he had done my son’s 1/2 thyroid/parathyroid surgery back in 2010. Most agreed that it was a good choice for me due to the auto immune problems/fluctuations in my thyroid levels. The eye doctor will not do any treatments for me until the hormones are under control. I was not worried about the surgery itself too much and it has gone very well so far.
I still believe this was the right choice for me and I did see all the studies suggesting the same. As I am only a few days out, I am hoping for the best for a decent thyroid-less future. The only worry I have now is from all the negative stories I have read from people regretting the surgery, gaining 100lbs etc. Why is it we have to dig deeper to hear the positive ones? I hope I don’t have those issues. I’ll do my best to stay positive and will let anyone who is contemplating surgery, know how it goes!

[Kimberly]

#1184586

Hello and welcome – Hopefully, others who have had surgery will chime in here, but keep in mind that you are far more likely to see negative stories on the Internet than positive ones. Most people who are treated successfully go back to living their lives – instead of posting on the Internet.

We are always extra grateful for those few who have successfully “been there, done that” and yet stick around to share their experience with others!

[emmtee]

#1184587

Tica – I think that your decision to get a thyroidectomy was a good one. I have a positive thyroidectomy account that I can share.

I had wanted a TT back when I was diagnosed in 2011 for many of the same reasons that you mentioned. (The only eye symptom I had was some eyelid retraction in one eye, though). I had some issues finding a surgeon, but I think the main reason I didn’t get a thyroidectomy back then was the long length of time it took for me to become euthyroid on methimazole. (My TSH never did get to normal). Eventually I got comfortable on my ATD and decided to just stick with it.

Last year I realized that my neck had been growing. I was also having feelings of choking when I tilted my head down. I had an ultrasound and a biopsy, and it came back as “suspicious” for cancer. (It was benign, though). It was so large that it needed to come out, in any case. Fortunately, I had a really good surgeon this time. I doubt that she’d had many patients like me – excited at the prospect of having a thyroidectomy.

My thyroidectomy was 8 1/2 months ago. It went really well – no complications and very little pain. In the first 4 months after the surgery, I did gain about 10 lbs, but I haven’t gained anything since then, and when I do exercise or choose a healthier diet, I see a dip in the number on the scale until I go back to my old habits. That indicates to me that my weight gain isn’t completely beyond my control – I just need to get more serious about taking care of myself.

[Tica3]

#1184588

Thank you Kimberly and emmtee.
I feel that the eye involvement in my case sort of pushed my decision to do the surgery as I was a bit panicked when my vision was diminished. I went for that consult and the surgeon’s office was so “gung ho” on surgery. They admitted that they are bias towards surgery but the PA in the office said his wife had a TT for cancer and she does fine, the numbers would be easier to control etc. I jumped right in and then of course when I was at home recovering, I started second guessing my decision but of course, why bother as I can’t go back. I believe that if I had just started with the Graves and never had gone through several years of being hypo I might have waited longer but the thought of being on the methamazole for however long and then what? go hypo again? Surgeon had mentioned that the fluctuations are what can really keep the eye disease from stabilizing so here I am. So far I don’t feel to bad and I plan to be very diligent about taking my medicine, getting my tests done and pushing my doctors if I don’t feel right. Unfortunately, there seems to be a shortage of endocrinologists and I can’t even get in to see my doctor until Jan. She communicates with me via a messaging system and we both can view my results on the same system. It’s not as good as face to face but I manage. I will keep posting and asking/answering questions. Great to find a place like this where folks know exactly what you are going through!

[klassey]

#1184589

Greetings All,

I was diagnosed in 2010 with Grave’s disease. Had RAI. After 4 months started on synthroid and levels have been adjusted only a few times. Have been stable for years and felt great. April 2016 started with dry eyes, bloodshot, gritty etc. Went to eye Dr. treated for dry eyes with drops. 3 visits later I had swelling in left eye told him I had Graves (which was noted in my chart) also started with double vision only in the morning upon waking, rest of day seemed fine. He sent me to Nero Ophthalmologist, had orbit MRI to confirm TED and both eyes were effected. More swelling, tight muscles, double vision to the right and up and down movement. August 2016 started on IV steroids once a week for 12 weeks to stop progression. I have had to treatments as of this writing and see a slight improvement. Less swelling, can read better and still drive. Only side effect of steroid is headache day of and day after treatment due to blood pressure spike. I am very hopeful and have changed my diet to an anti inflammatory diet and feel good. My thyroid levels have remained normal for me. I’ll post more as things change. So thankful for this forum, not much info out there from others. My big question is to all, can this come back again once it is burned out? I know stress triggers my auto immune system big time!!!

[Kimberly]

#1184590

klassey wrote:

My big question is to all, can this come back again once it is burned out? I know stress triggers my auto immune system big time!!!

Hello and welcome! I’m not sure if you are asking about thyroid dysfunction returning or TED returning.

It is possible to have a recurrence of hyperthyroidism following RAI if the first treatment did not destroy 100% of your thyroid tissue.

TED most commonly occurs with hyperthyroidism or hypothyroidism – but it *can* occur in people with normal thyroid function.

It can take TED 2-3 years to fully run its course. Steroid therapy will usually only bring temporary symptom relief; most patients will see TED symptoms recur when the steroids are stopped.

Once TED has fully run its course, a recurrence is fairly rare. For patients who do experience a recurrence of TED after going through steroids and/or surgeries, stress or smoking (including exposure to second-hand smoke) can be factors in triggering the recurrence.

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