[Bobbi]

#1063670

Yes, TED is definitely horrid. When I was diagnosed with Graves disease — I was hyperthyroid — the medical community still called the eye disease GRAVES opthamopathy (sp?). People with the eye disease were told they had "Graves." But by the time the eye disease appeared in me, doctors and researchers had started calling it THYROID related opthamopathy. Or thyroid eye disease. I asked one of my eye doctors about the terminology change, and he told me that they were finding the eye disease in various types of thyroid illnesses, and not just hyperthyroidism. So, apparently, some doctors and researchers at least, think that you can have TED without having "Graves. " It doesn’t matter what it’s called: to paraphrase The Bard, skunk cabbage by any other name is still skunk cabbage.

Be sure that you are properly lubricating those dry eyes. It will help protect your corneas from scratches.

And the soft tissue swelling around the eyes is one of the more minor symptoms of TED. There are fatty "cushions" in the tissue around the eyes, and as the eyes are pushed forward by the swelling muscles, these fatty cushions become more pronounced. Whether or not the swelling will go away over time depends a lot upon how supple your skin is. Mine is old, and saggier than it was when I was young. It doesn’t recover from swelling like it used to.

[snelsen]

#1063671

I have TED, finishing 2nd year, couple surgeries, lots of double vision, light sensitivity, super dry eyes but they tear all the time.
Hate it a lot. If you have TED, get established with a neuro opthamologist, who should follow you all the way through. His big interest are visual fields, any blind spots, changes in seeing colors, and they check red first. All very important.
I also went to a pediatric eye doc, these are the ones who do the eye muscle surgery, much later on, after the damage has been done, if you have double vision thqt rules your life.
Just my thought, but i suspect that your TED is not from overmedication of T3. Basically, you are making thyroid antibodies that are attacking your eye muscles. That is what they like to do.
YOu will find lots of posts and lots of support on this board.
Shirley

[Kaylasly]

#1018275

Hi, I have been struggling with a mild case of Ted since January. I have Hashimotos but also came back with TSI antibodies of 46. Nobody seems to be able to tell me if I have Graves. I have TPO antibodies also, but all others came out negative. I ended up with Ted after being overmedicated with extra T3. I had an MRI that showed mild exophthalmos, more so in the right eye. I have had pain around my eyes and for a while was sensitive to light, blurry distance vision and I was dizzy. Those symptoms are better now, And now I have pain from time to time and dry eyes and dizziness sometimes too. I am able to function much better now, my eyes are looking more symmetrical, but I have terrible bags below them and also above them. Is this part of Ted? Will this eventually go away? My thyroid levels are showing in the normal range now. Any help would be great! This is a horrible and traumatic disease!

[Ski]

#1063672

Just one point ~ the antibodies associated with TED may or may not be the same as the antibodies we have that create Graves’ hyperthyroidism. That’s still under investigation. The logic would suggest that the antibodies must be different in some way, as antibodies are *supposed* to operate as a key to a specific lock. In other words, antibodies that help us fight off chicken pox can’t "morph" and begin curing a flu virus in our body, so it would make sense that autoantibodies would operate in the same way, and be very specific to a certain tissue. It is true that the antibodies for Graves’ and TED seem to appear together in many people, so maybe they’re the same, or maybe they’re just related, or maybe they’re somehow co-dependent on each other. Right now we just can’t say.

[Ski]

#1063673

Oh, and I have definitely not heard anything to suggest that overmedication of T3 can have any affect on when or how (or if) we get TED. One of the major research points for TED is trying to figure out its genesis. That’s simply not known yet. It has not shown any relationship to thyroid hormone levels being out of whack, in any case. Patients sometimes present with TED more than 20 years after they’ve been successfully regulated in terms of thyroid hormone. It’s a pretty capricious disease, very difficult to pinpoint a specific cause in any case, because it appears to happen differently for just about everyone.

[nowWHAT]

#1063674

I was hypOthyroid for app. 5 yrs and on 50 mcgs of Synthroid. I did a naturopathic detox to include vit c back in July, 2009 and by Jan. 2010 was euthyroid. I had noticed that my L eye appeared slightly larger a couple of months after starting the detox, but it was pain free and so slight that I was not sure what i was noticing. (perhaps there was actually r eye lid lag, caused by being close to 50 and also weight gain…).

…I went to the Optometrist in Oct. 2009, who noted the L eye was larger and said I should see my M.D. I waited quite some time because of no insurance and no issues or changes noted in my eye, and I decided I would address the eye issue later.

Well, 10 months has gone by and my thyroid is still normal, but, I have felt considerable changes in the L eye in the last 3 months, as well as seeing a mildly noticeable difference in the eye protrusion, pain in the inner ocular eye muscles, of course dryness that I now understand has been going on for 25 years with excessive tearing in the L eye that has now progressed to gritty dryness (I do use preservative free lubricant).

So, I saw my family prac M.D. a couple of months ago to address the L eye and had full labs–no autoimmune thyroid issues or abnormal thyroid function tests. I had an MRI to R/O tumors/cancer ass. w/ the proptosis/exophthalamos. MRI normal. Thyroid US normal.

So, it seems I have thyroid eye disease. I went to an Endocrinologist after seeing my optometrist a few weeks back, and he said "let’s just watch this". I DID NOT LIKE THAT ANSWER! I s/w the optometrist again, who referred me to a NEURO OPHTHALMOLOGIST.

My vision field test is normal. My L eye has lower lid lag now and the inner ocular muscles hurt all the time. I have been put on Prednisone 20mg qd that was increased to BID a couple of days after starting the drug. I have been on this med less than 1 week so far.

I know the side effects and am not at all happy, but , do not know any other viable options. My Naturopathic M.D. thinks that what ever attacked my thyroid is now attacking my L eye and she wants me to increase the vit c to detox this "new situation" in my L eye. She dismisses it as being strictly thyroid related… And, as I said before, I have no autoimmune antibodies that would suggest prior Hashimotos, etc.

Oddly, back in August, i had a wicked upper respiratory ‘virus’ and suddenly woke up with ‘allergic conjunctivitis’ in the L eye with greenish crusting that changed to a clear weeping (all during the weekend, of course). So, I went to the m.d. on that Monday and he put me on eye drops to address the ‘allergic conjunctivitis’. Things have not returned to normal since that strange episode regarding my L eye. No one seems to make note of the details of that strange eye infection or that it could possibly have something to do with all I have been going through with my L eye since August. It is oddly coincidental that this ‘infection’ exacerbated or precipitated the symptoms I now have. Can a virus cause proptosis, and this constellation of symptoms I am having? I read online about a couple of unusual cases where the proptosis was caused by asymptomatic fungal sinus infections that affected the eye muscles…

In any event, I am concerned from what I have read about TED and that I will progress to needing prisms to see because the clinical course looks like I will eventually have double vision and horrifically proptotic eye(s) and who knows when this will ever end? DOES ANYONE HAVE ANY INFO THAT COULD EASE MY MIND???? Or any input about all I have discussed?

Thanks,

Paula

[Ski]

#1063675

Hi Paula,

You’ll see by the discussions you find here that TED has the potential to occur in people without thyroid disease, it is not completely understood whether the antibodies are related, similar, or the same ones, but TED can and does occur in patients who have no thyroid imbalance or disease.

TED can include some of the severe symptoms you describe, but not for the majority of patients, which is the information I want you to come away with. Looking at pictures online of people who have the very worst symptoms of TED is likely to be frightening, and not at all helpful. MOST patients with TED end up with small changes that eventually revert, and for whatever issues remain, there are surgical options for correction that are getting better all the time.

The fact is that the way TED acts, we need to wait it out for some period of time ~ there isn’t much you can do while the disease is in its "active" or "hot" phase, other than prednisone (which you’re already using), and/or directed radiation (narrow beam to the eye sockets). Since TED is definitely an autoimmune condition (the antibodies attack the tissues behind the eyes, either muscle or fatty tissue or both, seems to depend somewhat on the age of the patient), then keeping your immune system "quiet" can have a profound effect on limiting your symptoms overall. This doesn’t mean that you need to "boost" your immune system, it’s actually just the opposite. If you "boost" your immune system, you throw all the antibodies in your system into "active" mode, which includes the antibodies that are attacking your own tissue. What I mean is that it’s good to keep yourself healthy, to the extent that you can, and limit violent reactions to stressful situations. You can’t avoid stress, it happens to everyone, but if you can do anything to keep your body more relaxed overall, you may be able to limit the action of the antibodies.

TED is emotionally draining, so keep that in mind and do what you can to minimize the effect on you. Use dark glasses (which are good for the symptoms as well), raise the head of your bed to minimize the swelling that can occur during the night, but also make sure you socialize, because the loneliness can almost be worse than the fact that you feel like you don’t "look right."

Typically TED operates like this: there is a "hot phase" that may last anywhere between 1-3 years (please do not panic). Smokers typically end up with the longest hot-phase duration. If you smoke, you can radically improve your course of disease by quitting, NOW. During the hot phase, changes are frequent, you may find that muscles swell and then "un-swell" (what would that word be?), different muscles at different times. It IS frustrating, I know, but it is what it is. If you experience double vision, prisms can help you, but keep in mind that during the hot phase, you may need them, then not need them, etc. etc., so I wouldn’t invest in anything permanent. There are stick-on prisms that would probably be more help if you end up needing them. Not all patients do. When you have transient double-vision issues, you can sometimes use a patch (alternating eyes) to relieve the feeling and get through your day.

After the hot phase, there is typically a period of stability, where there are no changes at all. I don’t believe I’ve seen a solid definition of that particular timeframe, probably weeks or maybe months.

After that, there is a short period of improvement, and following that is the ending "cold phase," in which no changes are observed for at least six months, I believe is the figure. Doctors diagnose the "cold phase" in hindsight, typically. While you’re going through this, you should be seeing an ophthalmologist, so you’ve got the right referral there, and you should probably see them monthly or bi-monthly, so they can evaluate the changes that are going on in your eyes. Once you’ve been conclusively diagnosed as having reached the cold phase, you can talk with the doctor about your surgical options, if any are necessary. Show your doctor a photo of your eyes "before" so they can truly evaluate how to get back there.

Surgery prior to the cold phase has the potential to activate the antibodies again, which would negate the effects of any surgery that is done, as well as limit your options once you reach the cold phase. They only do surgery early on in the process for patients who are in danger of having their optic nerve compressed, because that can take your vision. An easy test to see if that is happening to you is to look at a Coke can (we pick it because of the BRIGHT red color), separately with each eye. If either eye sees it as more "pink" than "red," get an emergency appointment with your ophthalmologist to talk about it.

I hope this helps, I know TED is no fun, but you will get through it. We’re having a conference next week in San Diego where you could get LOTS of information (and support) ~ if you can come, we’d love to have you!

[snelsen]

#1063676

Paula, and kaylasi, too.
Ski just sent a WONDERFUL post about TED. I am only sending this on, because I currently have TED, and have described some of my experiences. Ski’s post is so good, I suggest skimming through mine, and bookmarking and saving hers, cause you will probably want to refer to it again and again!! ” title=”Smile” /> shirley
I have written reams and reams of posts on this site about TED. Go to the search engine, put in TED, and/or my name, snelsen.
In all most posts, I tell people who have TED that they should be followed by a neuro opthamologist through the entire course of TED. As you know, they check visual fields, very important to do over the course of TED. Why? Because if the eye muscles enlarge, become more fibrosed (bigger, stiffer) and you accumulate some orbital fat, the space these things take up make it more crowded in the orbit, and there may be pressure on the optic nerve (optic neuropathy) That is a dangerous situation which can compromise your vision permanently. They will also check spatial vision and test the color red. If you notice any changes in your vision or color recognition, that is the time to call to come in to be seen by the neuro-eye doc.

With TED, the comment by the endo to watch it, is not really that unreasonable. TED is not their thing. With TED, you begin a frequent and long relationship with eye docs, ones familiar with TED.
Why don’t you read some of the extensive comments on this subject, putting TED in the search engine also.

Bobbi and Ski have also written more information in this thread which is very helpful.

Re labs, meds, etc. etc. None of it make a bit of difference in the treatment, or really in the diagnosis. When you have TED, you have it. Not everyone has it as severely as I am having it. I am probably an extreme exception, since I had a lot of double vision, and I had to have an emergent orbital decompression because of pressure on my optic nerve. The other doc that followed me through the entire course, was a pediatric eye doc, for IF you have diplopia, or double vision, they are the ones who operate on the eye muscles and move them to help or even eliminate the double vision. I am in my second week out from that surgery, called strabismus surgery.
I hate TED, this site is wonderful for support.
Shirley

[nowWHAT]

#1063677

Thank you to ski and shirley for the info and assurance that what I have read has been the more extreme cases… It is stressful to have so many ‘unknowns’…

Can you elaborate on why the immune boosters actually make the hot-phase worse? …my naturopathic m.d. wants me to increase the alpha lipoic acid and the vitamin c- both of which increase immunity, amongst other things! I have read about people who report using alpha lipoic acid specifically when the TED exacerbates because of its anti inflammatory properties…

So, now I struggle with d/c’g both of these altogether if I follow the traditional medicine route or following holistic medicine that ALSO has treated MANY diseases successfully when the traditional approach has not been such a success…

I know you cannot really comment on that- i just need to research further and understand why I should/shouldn’t use certain nutrients and be informed.

Thanks again,

Paula

[Ski]

#1063678

It’s because your immune system has run a bit amok ~ in most of us, boosting our immune system protects us from things that are attacking us, by stimulating the antibodies that act on viruses and bacteria in our body. With us, our immune system has developed antibodies to our own tissue, so boosting the immune system increases that attack as well. I hope that makes sense.

[nowWHAT]

#1063679

O.K. THANKS FOR THAT CLARIFICATION. i DO NOT EXACTLY UNDERSTAND THE MECHANICS OF THAT BUT i WILL TAKE IT AT FACE VALUE. : )

[snelsen]

#1063680

You already have antibodies attacking your eyes, so that is a given.

To date, the research is in its’ infancy with any intervention of any kind affecting or changing the course of TED. It is true that oral and IV prednisone are sometimes used. They are very big time anti-inflammatory drugs. I am sure you know that these steroids come with their own set of problems. I did have a course of prednisone, it helped my vision and double vision for about 2 weeks. Someone will have tie me down and knock me out to have prednisone again. Only to save my life, that is IT!

A world famous inflammory eye disease MD at the Caset Eye Institute in Portland, OR has a very snall study with a very small sample of patients, trying to alter and/or improve the course and severity of TED.

I guess I am trying to get to the point of your question relating to your naturopath’s suggestion. You might want to summarize for her what Ski said in her last post, ie, that we already have the antibodies. Other than that, have the naturopath know what your eye docs are doing, and vise versa. From what I know from allopathic and naturopathic combined classes (Univ of Washinton and Bastyr) the upper limit of Vitamin C is 2000 IU, but of course your naturopath can guide you on that. I iearned that there are side effects of higher doses, think they are listed on the mayo website, but nothing super serious like mega doses of Vitamin A.

Talk through with your doc what Ski said. There is quite a bit of logic that may suggest that boosting immune system could increase the # of antibodies attacking your eyes….

[nowWHAT]

#1063681

What is interesting in my case of TED is that I DO NOT HAVE ANY AUTOIMMUNE ANTIBODIES. And I have read that if there are no antibodies present that vit. c, alpha lipoic acid and other immune boosters should not cause more havok. I do need to discuss this latest treatment with prednisone with my naturopathic m.d. My other m.d.’s definitely know what I am taking naturopathically as that is CRUCIAL that they know and can advise me if there are contraindications. Now that I think about it, the ophthamologist made no mention of the vit. c and alpha lipoic acid. I will make sure he is aware although it is in the chart…
The bottom line is I guess I am disgusted that I am having to use the prednisone, but I do know that it IS necessary to relieve the edema in my eye and surrounding muscles. I am so very aware of the side effects… I am only seeing some weight gain early on… No mood swings yet. I am trying to stay optomistic about the other things that could orrur.

Thanks,

Paula

[elf]

#1063682

Unfortunately, once the fat is pushed forward, into your lids, (resulting in swelling, or puffiness, or bags), it is not going to flow back "in its place". This can be dealt with surgically, later, when you are in the "cold phase".

Unfortunately as well, one has to just wait the hot stage out. Yes, we are conditioned to think that there must be something that we can do, it goes against our grain "to just wait". TED forces you to slow down. I don’t believe there is anything really helpful at naturopaths and others. The disease must run its course.

My hot phase lasted a year, and I am grateful for that (that it wasn’t 3 or 5 years). Still, it was a hard year to endure, – psychologically, even with others commenting that "there was not much difference".

I did orbital decompression 4 years after the onset of TED, and 3 years into the cold phase. I did the lid surgeries (to reduce my fat-filled lids and make normal-looking lids) last month, 5 years after the onset of TED. It takes time. I can’t say I look exactly the pre-TED way, but then I am 5 years older since then. And, despite all the surgeries, the "Graves frown" did not disappear (this is a frown that appears between your brows when the eyes are pushed forward). I still like the way I look, but it took long time to get here.

[snelsen]

#1063683

Hi Elf!
What a good, realistic email! Your description of the course of TED stating that we need to "wait it out" is the way it really is. Otherewise, there is nothing that really can be done to cure it, fix it, etc. Except to protect our eyes, use eye drops and lubricant . Plus, being followed by a neuro opthamologist is critical in my opinion. If this had not happened, I would be blind in one eye because of damage and compression of the optic nerve .
Thank you for listing the course of your Graves’ experience at the bottom of your post. I have seen that before, and really like it. How do you do that?

Some questions for you now.
Did you have strabismus surgery? Did you have double vision that really altered your psychological and social world? I have had one emergent OD, because of optic neuropathy during the hot phase. I’m at the end of year two now. Just had strabismus surgery on both eyes a couple weeks ago. It has helped the diplopia a lot. My inferior muscles were affected, so looking straight ahead and/or up was so stressful b/c of the double vision.
Eyelid surgery, which you just had. What was the recovery like? Did you have upper and lower lids done? Has it helped at all with light sensitivity? Or was that a problem for you? Did you talk to several surgeons before you chose the eyelid surgeon?
Did they propose essentially the same procedures, or was there a lot of difference in their ideas about what to do?
Did you have any skin grafts to your eyelids?
Thanks, elf.
Shirley

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