[kmmred]

#1058623

Hi Everyone,

I’ve had Grave’s for 15 years. I still have my thyroid, and have been treated off and on with a small dose of Tapazole.
I recently had an appt with a new endocrinologist and he suggested that I have my thyroid removed to ensure that I don’t develop TED. He said removing the thyroid removes the antigens and has been shown to prevent and even sometimes help reverse TED.
I thought this was odd, and have not been able to find any data on it. Of course I know that the thyroid eye disease and grave’s involve different antibodies. Just wondered if anyone else had been told this.

[graves02]

#1169071

I have only had Graves for a short period of time (2009) and fighting surgery for my TED (muscle surgery). My understanding is that Hyperthyroid and Graves run their separate course. I was told it can correct itself and then return at a later date. Also staying on meds won’t help the Graves. My Hyperthyroid is under control. Don’t think my TSI or Graves is under control. People with RAI can get TED many years later. I have heard so many things that I’m very confused. Was told not to have surgery until stable, but my TSI numbers are going up again. I’ve been off meds since March 2011. Been trying to find someone who has turned down TED muscle surgery. Why and how are they doing? Finding many doctors are not real familiar with Hyperthyroid or Graves Disease. Doctors are more familiar with Hypothyroid. Feel like I’m doctor hoping. When I ask questions they don’t know the answer. Please let me know what you find out.

If anyone out there has had eye muscle surgery please answer some of my questions. How many surgeries? How are you doing? When did you decide to do the surgery? Has it helped? Do you have full range of motion? What happens to the eye lid when the muscle is moved? Did you feel the adjustment? My eye sight in both eyes are perfect. I do have double vision and was told they can’t make glasses for me. Scared to mess with my eyes. Feel like I’m functioning and not walking into walls. Do get a little car sick.

Been going to the same Endo since 2009. Looking for someone who is more specialized in Graves and Hyperthyroid in the
DC/Meto area. Someone who is more up to date on things.

[Kimberly]

#1169072

Hello – If you do a search on this board (located in the top left-hand corner of the screen) for "strabismus" or "eye muscle", you can read experiences from other patients who have been through this procedure.

It is true that the thyroid involvement from Graves’ and the eye involvement from Graves’ tend to run on separate courses. It’s most common for thyroid and eye involvement to occur at around the same time, but some patients develop Thyroid Eye Disease *before* they are diagnosed with thyroid issues — or even years after being treated for hyperthyroidism.

As for determining when the "stable" phase has been reached, many docs will now look at a combination of antibody levels *and* whether or not your symptoms are still changing.

Most patients that I’ve come into contact with were thrilled to have their strabismus surgery and get rid of their double vision. However, if you aren’t bothered by your symptoms, it’s certainly your choice to seek a second opinion before undertaking any surgical procedure!

[snelsen]

#1169073

I am certainly one of people who was THRILLED to have strabismus surgery to correct the double vision. I have written quite a a bit about it. My view on this is definitely that endos treat Graves’, but the only thing they would do regarding TEd is to refer you to an eye surgeon and a neuro/opthalmologist (maybe one visit for this doc, since your main problem seems to be double vision.) I am going to look at your original post, try to answer your ? in your post. Well, that did not work.
1. Both eyes done at same time.
2. Easy recovery, I was so please to be able to see one image
3. The muscles moved, depend on which double vision you have. There are 6 muscles.
4. Decided to have this surgery the minute it was determined my TED was stable, meaning that my eyes were not changing every week or to. In other words, they evaluate how to help you, with measuring your double vision. If it were changing every few weeks, then they would not have an accurate baseline to correct double vision
5 I was lucky enuf to feel the adjustment immediately. It was wonderful. the Double vision was ruining my life.
6/ This is all a learning process, so you can tell from my comments that i was not scared to mess with my eyes, I could not stand to live the way I was living, and regard this surgery as the most wonderful thing for people. They do it all the time on little kids.
Again-endos do not evaluate eyes.
Any respectable endo treating Graves’ is certainly familiar with hyperthyroidism, because that is what Graves’ IS!
Yes, as Kimberly said, Graves’ and TED are two distinct autoimmune disease processes. And TEd is more likely to occur, a lot more likely to occur, with Graves’ people. That is wy is called thryoid eye disease, it used to be called Graves’ eye disease.
Hope this helps Shirley

[kmmred]

#1169074

Hi,
Sorry – I should have renamed my post. I mean getting a thyroidectomy – not the surgery on the eyes. The endocrinologist said that getting a thyroidectomy can prevent ever developing TED.
I have never heard of this and was wondering if there is truth to it.

[snelsen]

#1169075

Oh, ok.
I do not think there is any relationship at all of having a thyroidectomy preventing TED at some time in your life. As you know, we are not docs, but people with experiences. But I do not agree with him. I don’t think you will find literature or, people on the board, who will state this relationship, as you have already wondered. TED is related, and more likely to occur with Graves’ people, but the whole disease is separate one, another immune disease process with antibodies that attack you eyes, the muscles of your eyes, your eyelids, etc.
From a personal experience, I did have a thyroidectomy. Developed TED over 4 decades later, and a very severe degree of TED>
I think it is my 8th surgery on my eyes next Tuesday.
Do you have any way of getting a second opinion, or asking the endo you have now much more about what he said? I would question him closely.
Is you Graves’ controlled now? Are you getting hyper again, or are you euthyroid? Sounds like you have done well with Tapazole all these years. ARe you having labs now and then, both thyroid and an occasional liver function panel?

Regarding having the thyroidectomy, there are many good posts about pre op an post op recovery. Briefly, it is essential you find a surgeon who does at least 50 a year, they are most usually found in academic centers. There is not a lot of post op pain, but muscle soreness and slight incisional discomfort. Having someone to help you for 5-7 days is about right. Returning to a stressful job in 2 weeks is asking a lot. Taking at least 3 weeks off, or going back part time is much better.
It takes a while to recover from a general anesthetic, mainly you are surprised at how tired you are. But it is a short surgery.
There are so many good anti nausea pre meds now that nausea is rarely a problem
Shirley

[Kimberly]

#1169076

Hello – As Shirley can tell you, thyroidectomy is *not* a guarantee that you will be able to avoid eye problems. She has documented her journey with TED extensively on these boards…and she was treated with thyroidectomy years ago.

There was some new guidance released this year from the American Thyroid Association and American Association of Clinical Endocrinologists regarding TED and treatment options. For patients with no risk factors* and no active eye involvement, the guidance says that all three treatment options (RAI, Anti-Thyroid Drugs, Surgery) are equally acceptable. For patients with active and moderate-to-severe or sight-threatening eye involvement, the guidance says that methimazole or thyroidectomy are the preferred treatment options.

There was one study that monitored antibody levels for patients who had been treated with RAI, Surgery, and Anti-Thyroid Drugs. The ATD and surgery groups had similar results: a major drop in antibody levels during the first year, and then a more gradual decrease over the course of the next few years. With RAI, the antibodies spiked significantly within the first six months and then gradually leveled off. After five years, antibody levels for the RAI patients were still higher than the ATD and surgery group (although much lower than they were before treatment).

I’m not personally aware of any studies showing that surgery can offer more protection against TED than Anti-Thyroid Drugs.

*Smokers and patients who have extremely high T3 or antibody levels are considered “high risk”.

[sutan351]

#1169077

Have to say I’m on the other side NOT THRILLED with eye muscle surgery. I wish I could express a better story. Surgery is a slippery slope and I would proceed very carefully. I’ve had two muscle surgeries this year and other than better pupil alignment – am much worse off. Sure my husband can attest to that, because I express it daily.

Strabismus may help some with Double Vision, but I truly believe Drs and others make it seem like an easy fix. It’s not an exact science and even more complicated if you’re dealing with horizontal and vertical images, as I do. And muscles that have become fibrous and scarred.

Before I had my first surgery I wish I had taken better daily notes of my eyesight and tried prism glasses. Now after two surgeries I’m wearing glasses with a ground in prism (for distance) have close up double vision and a great deal of difficulty reading and writing. I have to look a little sideways which has led to neck issues. The Dr. on the first surgery over corrected (in my opinion) and he was at a premier medical facility in the country. Since the muscles continue to adjust after surgery it’s better for a surgeon to be more conservative. The second surgery corrected some of the damage from the first, but still the closeup DV is an issue.

I remember a neuro-op telling me early on that close up DV was always a risk and to not consider any surgery (including OD -). I constantly try to replay where I went wrong in this decision process of dealing with my TED. I thought I had it bad before, but now know it can get much worse.

There is no reason you can’t try Fresnel (press on Prisms) before getting glasses with a ground in Prism to see if that helps. I’ve had Prisms of all varying degrees some much stronger than others. And take daily notes of your dealing with your Double Vision. And ask a lot of questions before proceeding with surgery.

In terms of the surgery – it was manageable and the healing was OK nothing like Orbital Decompression. But as I stated, when I opened my eyes after that first surgery…all was not OK immediately. At a cross roads now to push my Dr. for another surgery or deal and move onto eyelid surgery.

Sandy

[graves02]

#1169078

Thank you Sandy. The doctors and my sister are trying to push me into muscle surgery. They claim they can’t make eye glasses for me. I have vertical and horizontal problems and have been told I would become dizzy with eye glasses. Learning to live with the double vision. When necessary I cover one eye. My right eye is worse than my left. I’m scared of the surgery because of some of the reasons you have stated. I have read that you can lose you range of motion. (looking left and to the right) Feel like it’s a crap shoot. These are my eyes their messing with. One doctor said it would be one surgery and others say many surgeries. Don’t know who to listen to. Your suppose to be stable. What is considered stable? Just eye measurements or eye measurements and TSI. Not finding consistancy in the medical profession.

Hope things turn out better for you. Please keep me posted.

Thank you again,
Wendy

[sutan351]

#1169079

Wendy,

I just sent you a long private message but wanted to mention one more thing after reading you original message. I also did some Dr. hoping and one message was consistent….get your thyroid under control before you treat your TED. For me this translated into trying meds for nearly 2 years to treat my Hyperthyroidism. My TSH was under control for the most part, but inconsistent and since I wanted to address my eye issues I went ahead with RAI in April 09 and was Hypo by Sept 09. Then waited a year before Orbital Decompression and 9 mos before my first eye muscle surgery.

When I was first diagnosed with Graves I remember reading about Hypothyroidism and not relating. But that is the place most of us settle in and with Levothyroxine my numbers have been much more stable. My endo keeps my TSH on the very low end, which I’m fine with. The endo’s are great for the TSH/TSI etc. but you need to keep pushing for a good Opthamologist in your area. Another thing I found is some of them do one of the required surgeries, but not all. In my case I needed Orbital Decompression, Eye Muscle and Eye Lids The Dr. I mentioned did all three….which is also questionable because it’s hard to be an expert in all of those areas. The most challenging is to find a good strabismus specialist!

Best of luck and stay in touch,

Sandy

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