[shop_momma]

#1019419

Hi All…This is the first time I have posted although I have had TED for over 4 years – diagnosted when I was 43. My problem doesn’t seem common as I can’t find anything like it so I am going to put it out there and see if anyone can provide any insight. Brief background is that 4 years ago I noticed lid retraction on my right eye and ptosis (droop) on my left eye….it was very pronounced and I had never noticed it before. I immediately went to opthomologist and they told me thought it was Graves Disease and order blood test. Ever since then I have seen multiple endos and two different orbit specialists to only be diagnosed with TED, never full blown Graves….my thyroid levels have always been well within the normal levels. I did have lots of Graves symptoms at the time and was convinced I had it but the last endo finally ran some hormone tests and determined I was fully menopausal (had hysterectomy at 40 but ovaries remained…obviously they went on strike though!!).

Anyway, with estrogen therapy all my GD type symptoms resolved and I continue to test normally. The active portion of my
TED ended over a year an a half….I never had any redness or dry eye/gritty symptoms. ..only bulging and retraction. According to my doctor I have it in both eye but I really only saw the bulge in my left eye due to a lid positioning difference cause from an early childhood injury which created a hernia in my right eye….but he said my right eye actually had more proptosis than the left one… Well, after all these years and finally making sure that I REALLY wanted to go through the orbital decompression surgery I finally did it two weeks ago….on my left eye. I have the most wonderful and skilled surgeon, Charles Soparker, in Houston. He and his fellow associate are the ones that performed Barbara Bush’s surgery. Anyway I was prepared for pain and discomfort and was fearful but willing!!! The surgery itself turned out to be nothing for me….they have developed a technique they call "Small Bone Orbital Decompression Surgery" which is not nearly as invasive and is used on cases with less severe proptosis. Surgery started promptly at 7:30 and I was out of recovery and home by 10:45!!! Can you imagine….and with NO PAIN…I never took anything for pain, nothingl And even just out of surgery, what a HUGE difference….now I could see the poor right eye was bulging away…but being this easy I was ready for the surgery for the right eye as soon as they would let me.

Now the trouble begins…..1 week post op I go for follow up and all is well…he did a lower lid repositioning and fat relacement under my eye to fill in the area which was slightly sunken in (mostly likely due to age….not the TED) but I was looking great except for the minor remains of bruising under the eye which was going away rather quickly with hot compressess. Then over the next 3 days my eye begins staying blood shot, the tissues in the inner eye was swollen (like lizard eye!!), light sensitivity, lots of tearing, blurred vision (with a few periods of clear vision but mostly blurred) and overall I now looked like I had been hit in the eye…The upper lid was swollen and I began to develop a "bulge" under the eye… more toward the inner corner (now I know it was the implanted fat). No pain, so I didn’t think it was an infection but I knew something was going on as they eye itself was burning and irritated and not getting any better, but worse……I called a few times and they would recommend a different product for severe dry eye…it helped some but I was putting them in 3-4 times per hour and my general appearance was not a good one…One of the nurses says "why don’t you come in and let him take a look at it" so on Tuesday (11 days post-op) I see him and he immediately says I have a "recurrence of the TED" I was stunned….it made sense with the symptoms but I never dreamed that the surgery at this date would raise the sleeping giant….and these symptoms were worse than I had ever had….I am lucky that my right eye is not symptomatic at all during this, only the "repaired" eye.

He tells me the under eye bulge is the fat he transplanted and he prescribes a steroid dose pack and says to come back in two days or call immediately if there is any worsening. He says not to worry about the blurred vision as that will not be lasting. Now this is not what I expected to hear…I don’t know what I expected but not this…I go back today…there is some improvement with the steroid with regards to the redness, irritation and blurred vision but not with the the swelling and yes, new proptosis on my beautifully corrected eye!!! Not as severe yet as the right one (yet??) but the fat bulge does look strange…

Anyone ever heard of or experienced a recurrence 4 years out – or lets says 18-24 months AFTER the active phase or had a recurrence following OD surgery??? I would sure appreciate any experience, words of wisdom, etc…as so far I don’t find anything like this from my Google searches!!!!

Lopsided and irritated in Houston….Lisa

[Ski]

#1071525

Hi Lisa,

The "cold phase" of TED can be tricky to determine ~ the doctors who spoke with us in October told us that it is only effectively diagnosed in retrospect, because you can’t always tell where you stand in the cycle of TED until you have a good, long period without changes. Surgery done before you hit the cold phase can risk the issues you’re experiencing ~ I know you felt as if you waited long enough, but everyone’s different (should be our mantra here ” title=”Wink” />) and so there really are no absolute timelines.

I really hope the secondary treatments give you relief! I also hope this recurrence is short lived. I understand the blurriness has to do with recovery, that should resolve as you heal.

[welsh35]

#1071526

Hello
I’m new to this site but have Graves since 1988. Ten years after diagnoses I developed TED and had an orbital decompression in both eyes, along with the muscle surgery for double vision. I did get a recurrence in the last 18 months and have since undergone another decompression in both eyes along with muscle surgery. It is hard to find an eye doctor who is familiar with TED.
Tacopatti

[shop_momma]

#1071527

Follow up after seeing my doctor again on Thursday….I am responding to the low dose steroid dose packk but I will take the last one tomorrow so I am wondering what will happen after that. My doctor says this is my bodies response to the surgery (even though I took a dose pkg immediately following surgery) and he says he doesn’t think this is a full blow recurrence of the active phase….but I guess I will have to wait and see. I definitely still have swelling and pressure but the eye redness and extreme dryness have lessened with the meds….I am still using lubricating gel, especially at night and less frequently during the day but it is not nearly as bad as it was at the beginning of the week.

For anyone else that might be interested here is what I have learned:
Out of 4000 surgeries he has only seen this about 20 times….I am quite special and unique~!!! Wish I weren’t…. He has seen recurrence after active in cases of severe trauma..one patient had a severe car wreck and he frequently sees patients after they have been operated on by others but before they were completely "cold". Mine was DEFINITELY cold and it was over 4 years since I first had symptoms and two years since I have had no changes..

I will have wait at least 6 months before doing the second eye (instead of doing it next week!!!) and I will need to take steroids prior to the surgery. My neighbor who has lupus and myestenia gravis (sp?) said that someone with an auto immune disease should ALWAY be under cover of a steroid when having surgery (something to note for others, might want to research this more).

He says since I have responded well to this low dose he is hopefully that this is just inflamation and will not become active enough to begin laying down the scar tissue and muscle englargement….thus undoing my OD surgery.

This is definitely not the outcome I had hoped for, nor expected….but I do have complete confidence in Dr. Soparkar and know that I am in qualified hands. Other than this my surgery and subsequent recovery were a walk in the park…all healed, no pain, etc….

In case anyone is interested I will keep this post up to date as I get more info and if there is any change in my symptoms.

Have a great weekend…..

[shop_momma]

#1071528

Well its been a long time since I posted but update as follows: I had two minor in office lid correction surgeries (one in November 2010 – the eye that had the orbital decompression and one in April 2011-to correct the ptsosis on the other eye) and all went well with no complications or side effects. I was treated preoperatively with a steroid dose pack as a precaution. Then on July 27 after a long exercise I looked in the mirror and the original eye that presented with TED the lid was completely retracted beyond the iris!! It was shocking…I was out of town and took a few minutes to relax and then called the doctors office. They had me email a photo. I had just seen the doctor the week before for the final post op on the other eye lid correction and both eyes looked great….Within an hour or so the retraction was gone but the eye tissue was definitely puffy and swollen but the eye itself wasn’t red or irritated. Over the next few days the swelling receeded. Doctor wants to see me in a month….but this is very strange. My thyroid still tests normal and I feel fine. Eye is back to normal now…I really don’t know what’s going one. Has anyone else had recurrences like this?? It’s been many years with no active eye changes…I really don’t understand and would welcome hearing anyone elses experience with flare ups…

[msmanatee]

#1071529

I wish I had something definitive to offer but I am new to TED so my story is just beginning. Like you I do not have elevated T3 or 4 but unlike you, I have suppressed TSH and elevated TSI so they are calling it Graves. I just want to thank you for telling your story. It wasn’t until I found stories like this that I realized how much misinformation is out there. We have a member who got TED decades after her thyroid was removed (talk about an eye opener)!

I hope your eyes calm down soon and thanks again for sharing.

[andilynn]

#1071530

Hello, I am new to this site but im glad I can look here and feel like I am not alone in this!! I have had graves disease for 4 years now. My old eye Dr talked about orbital decompression surgery but kept dragging it on.."next vist" then next visit comes and he’d say "next visit". It seems so hard to find an eye Dr that actually gets graves disease. In the last couple months my eyes have gotten much worse, and no help from my eye Dr. So I saw a different Dr and Im so glad I did!! He is great and finally is going to do something about my eyes. Beacuse my eyes are getting worse my endo decided to run some more tests on me and turns out I have an elevated TSI. My new eye Dr wants to hold off on the surgery because now he wants to get my TSI to normal limits and wants to try intravenous steroids. I now find myself willing to try anything because I dont know how much longer I can live with the protusion, dryness,pain, blurry vision, double vision…its really getting to me! My goal is to get the surgery because I feel that is the only way to get my eyes back to normal! has anyone tried the iv steroids before getting the surgery?? and does it seem to work? I have been on steroids and hate the side effects. Does the iv steroids have the same side effects as oral steroids.

any help is appriciated!! Thanks!

[Kimberly]

#1071531

Hello – Hopefully, you will get some responses from those who have "been there, done that"! The usual process is to postpone any surgeries until the eye disease has stabilized; in other words, your symptoms aren’t getting better *or* worse. The one exception is if you have sight-threatening compression of the optic nerve, and in that case, emergency surgery is performed.

In general, I’ve heard that IV steroids are usually better tolerated than oral steroids, although *any* type of steroid therapy comes with risks and benefits. Steroids can provide relief from symptoms and can potentially improve the outcome of a future surgery – but I’m not aware of steroids having the ability to *shorten* the course of Thyroid Eye Disease, which generally runs over a period of a couple of years. My understanding is that steroids are more of a temporary fix for the more severe symptoms of TED.

[snelsen]

#1071532

The previous response from Kimberly is "right on." I don’t a lot of time at this moment, but briefly, here are some comments from my knowledge and experience.
1. The IV steroids "work," and your symptoms will decrease, but it is temporary fix. Usually used to decrease the swelling in the orbit, and the potential or actual pressure on the optic nerve.
2. As other posts by the facilitators and some TED people including myself, it is hard to identify when we are in the "cold" or inactive phase of TED. It is based on length of time, our own subjective comments about our eyes (saying that "they have not changed much for a while," as opposed to "they seem to change every week.) And the objective measurements of our eyes buy the doctors you need. In my case, I was followed by one eye doc to measure diplopia (double vision), take some measures to help it, which is usually prisms, although they were not a magic fix for me.) And, a neuro-opthamologist, who does different measurements, primarily visual fields by a machine (not the wiggly finger kind) and other measurements for color identification.

Ideally, all surgery should not happen in the active phase, or should be done in the cold or inactive phase. That is because they cannot rely on measurements to do corrective and helpful procedures, if they are changing all the time.
The one reason to do any procedure in the active phase is if there is pressure on the optic nerve.

My active phase was about a year and 1/2. I did have to have an OD in the active phase for the reason stated above.
Double vision was hellish for me. I had strabismus (eye muscle) surgery, which was absolutely marvelous for me. Then I had upper eyelid surgery to lower them. That was ok, but I have a continuing issue of not being able to completely close my upper lid. My personal thought is that it is a complication of the OD. NOW, my next three procedures are another attempt to lower one eyelid so that it will not drift open at night, and palatal grafts to my lower lids. I have way too much corneal exposure.
I don’t think most people have the degree of severity of TED that I have had . I hope not. My TED appeared almost 50 years after I had a Graves diagnosis. At that time, I had a thyroidectomy, which I chose, and was very pleased with.

I may not have covered all your concerns and questions by talking about my experience. Have to go now, look forward to more posts. This is an amazing and wonderful site for Graves’ TED.
Shirley

[Marlan]

#1071533

I find all of the reoccurance of TED symptom stories to be a real bummer. I’ve had TED since April in my left eye. My thyroid function tests are normal and my TRAb and others are high. So my official diagnosis is euthyroid Graves. My endo. says "You haven’t had this very long". This disease has certainly changed my every day life. I live in a beach town. The wind is terrible for walking and I am very light sensitive. My eye waters all the time and always looks blood shot, swollen and bulging. Wish ther was a magic pill for this.

[snelsen]

#1071534

Hi Marian,
My understanding of what you have said, with normal range of TSH, T3, T4, and none of the usual Graves’ symptoms (I really don’t know about that part) would be that there is no reason for you to have the diagnosis of euthryoid Graves. It certainly does seem like you have TED. Perhaps I missed some information in a prior email.
The antibody tests confirm that something autoimmune relating to antibodies is happening, but they are not really diagnostic for hyperthyroidisism, nor are they a basis for any treatment.
In summary, if you (I, or anyone) has TED, that is what we have, and the pathway for this is what you have read already. Good management and careful observation if you have TED, with surgical procedures available when we are sure we are in the cold or inactive phase. Or, if we have Graves hyperthyoidism, treating it with ADT’s, beta blockers if needed, then follow up the rest of our lives, with the treatment we choose, of continuing with ADT’s. surgery or RAI, labs and thyroid replacement.
I think if we refer to some of the references Kimberly has provided, plus what I have learned, it is clear that many endocrinologists do not routinely order antibody tests. If they are high, (and your insurance pays for them, for many companies won’t) it confirms what we already know. That we have TED and/or Graves’, that we have an autoimmune disease. I look forward to clarification and corrections as needed to what I have written.
Shirley

[andilynn]

#1071535

thank you for the info!! I also found out that I have pretibial myxedema caused by my graves disease, and hopefully the iv steroids will help with that also! I really enjoy this site, very helpful!!

[Kimberly]

#1071536

Hi Shirley – The latest guidance from the ATA and AACE is that TRAb can be used as an “alternative” method for initial diagnosis. In addition, the guidance suggests measurement of TRAb for patients who are ready to go off of ATDs (in order to help predict the chances of remission) and also recommends TRAb testing for women who are pregnant and hyperthyroid or have a past history of Graves’. High TRAb levels are also a risk factor for potential eye complications following RAI.

I’ve seen a lot of conflicting information on whether antibody testing is useful for predicting the course of TED. Many doctors do believe there is a high correlation between decreasing antibody levels and the “cold” phase of TED. However, as you have pointed out in the past, it’s important to take the patient’s day-to-day symptoms into account when making this determination – and not just a set of labs!

[sutan351]

#1071537

Have to jump in here and also add a few ?? of my own. For anyone new to Graves…take time to ask questions and know this is a disease of patience and things move very slowly. Acceptance of that will help lessen the stress. This is a VERY helpful site!

I’ve had Graves since Fall 2006 and waited until May 09 to have OD. In Jan 2011 had my first Eye Muscle surgery. My TED was stable (although never good), I had to tilt my head slightly to see single vision, but no Double Vision up close. I almost opted out of the Eye Muscle Surgery going straight for the Eyelid Retraction Surgery. At this time I was dealing with DV (although with a compromised head tilt) but not wearing prisms. I do wish I had taken better daily notes of my symptoms and DV severity.

Shirley I know you had good results and I wish I could say the same. I was at one of the most reputable Hospitals in the country, and my Neuro Opthamologist did my OD. Hard to find a straight Eye Muscle Surgeon (but often better). The first surgery made things WAY Worse and I had DV up close. Second Surgery helped undo the over correction of the first, but now have DV looking down, up, sideways and up close. That was always the risk.

Have since come to my own conclusion that Eye Muscle Surgery is like a game of twister. You detach one area and reattach another and it changes the configuration…i.e correction (prism) and range of DV. There is no exact science to this surgery. My new Strabismus Specialist (Eye Muscle Surgeon) does not recommend a third surgery. Very difficult for me to read and glasses (now with a 6dp) prism come off and on all day long.

A few comments/questions

* Has anyone had success with Vision Therapy ? I went to a Opthamologist that specializes in this and he did a through exam for a prism correction – but the cost of the actual Vision Therapy is very high. Most Surgeons will dismiss this treatment.

* Trying to map out a next step to push for another muscle surgery, see another Dr., or just go for the Lid Retraction and Lower Lid. I have a great deal of exposure ( can see the whites all around my eyes).

* I continue to use drops 6-8X day and ointment, cold compress and ice at night. Wind is a problem and I ALWAYS need sunglasses. Light sensitivity is an issue. This is even a problem with indoor lighting (like overhead can lights). Believe this may improve after Lid Surgery.

* Dealing with TED for over 5 years now. Ups, Downs but still dealing….is this normal?

* Just ordered ‘polarized’ tinted/ indoor prescription glasses. My new best friend, although they may look a little silly.

* Does Selenium really make a difference for TED – have that as a priority to try asap.

Thanks for the continued insights. This is such an individual disease symptom wise, which makes it even more difficult. But I do believe ‘surgery is a slippery slope’, as one surgeon told me early on.

Sandy

[Kimberly]

#1071538

Hello – Thanks for the great tips! Hopefully, others will jump in here as well, but a couple of comments on your questions…

1. We usually hear that TED runs a 2-3 year course, although one presenter at last year’s conference said that it runs 3-5 years.

2. There was a study done on Selenium that seems to be promising, *however* the study was done in a part of Italy that is known to be Selenium-deficient. It will be interesting to see if the results can be repeated in parts of the world that don’t have this deficiency issue.

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