[MariaG]

#1058712

Hello!

First, thanks for everyone on this forum – I’ve already found valuable information and useful personal experience stories.
I am a 37y female from mainland Europe and was diagnosed with Graves in mid July after experiencing typical hyperthyroid symptoms (heart palpitation, fatigue, weight-loss, etc.) for about a month (didn’t know what to make of those, otherwise would’ve gone to GP sooner).

My GP took some tests and found TSH to be <0.01 (N 0.4-4), fT4 54 (N 11-22) and HGB 113 (N 118-150). He put me on beta blockers (still taking those a month later, but less -> 37.5mg per day) and 6x50mg per day Tiotil and said to get an appointment with endochrinologist, which I did on August 11 (a month since the diagnose, but I got lucky – usually the waiting time here is 2+ months).

About a week ago I noticed puffy eyelids, but no other obvious eye problems. Gradually over days the eyes started to get easily tired and for the past three days (right around the time when I saw the endochrinologist for the first time) I’ve had redness in eyes and diplopia – and that’s what I’m really worried about.
My endo said to take ‘artificial tears’ (which I do and it helps against the dryness and the redness), but the redness gets worse every day and it’s the worse in the morning. I also mentioned to endo that it’s hard to focus the eyes in the morning, but she said not worry and that it’s not serious enough to treat. Well, this morning it took me 5 minutes to get the vision straight and now I’ve also tested eye movement during the day and found that extreme movement (left-right-up-down) is very difficult and double vision is constantly present in this case.
Blood test results from 3days ago show improvement – during this month the fT4 dropped to 8 (slightly below normal, which is 11-24), fT4 is 5 (prev. nbr. unknown) and TSH shows 0.041. So I seem to respond to treatment (very?) well and Tiotil is now reduced to 5x50mg per day and after a week I’m supposed to lower it to 4x50mg. New blood tests are scheduled for early Sept.
I’m a quite active in sports (currently gym and swimming 5-6 times a week) and in general feel very good since two weeks after I started to take the meds. I also used to be a heavy smoker (20+ years total and for the past 10yrs 20+ cigarettes a day – quite embarrassing qty. indeed, especially in hindsight). My endo said during my appointment three days ago that I must quit smoking as it greatly increases risk on eye problems. So I did quit immediately (with the help of nicotine patches which the endo said are fine) and been now smoke-free for 2 days and have full intention on keeping it that way.

If I understand correctly, quitting smoking (even if one used to be a heavy smoker for 20+yrs) reduces the risk of the problem worsening. Or is it too late when double vision (not mild, but medium level problem) is already present (not that I would start smoking again)? What I would like to know is what are the chances of eye problems (especially double vision, aka diplopia) – to progress (given past development in one week, which in my opinion seems really rapid). What are the experiences of other forum users with TED (thyroid eye disease)?
My computer is my working tool and source of income, so I simply cannot afford to live without being able to use it for at least 8hrs a day….

Apologies for the long post and thank you in advance for your insight ” title=”Smile” />

[Bobbi]

#1169505

Hi, and welcome to our forum.

Kudos to you for quitting smoking. It was one of the hardest things I ever had to do. And, as far as I know, the jury is out on whether or not quitting "helps" with the eye disease. The problem with scientific research on humans is that we are all so complex, and variable, that it is truly hard to provide the types of controls that give concrete evidence. What was known when I went through the two diseases was that people who ever had smoked had worse eye problems than those who never smoked. Now, research suggests that quitting will perhaps ameliorate the course of the disease. I don’t know if that is well-documented or not, though. But keep at it. It is definitely worth while to give up cigarettes. Ten years after quitting, I am feeling strong and healthy, and given my (rather advanced) age, that might not have been the case if I had continued to smoke.

What happens with the eye disease is that the muscles of the eyes become enlarged and stiff. There are three sets of muscles for controlling the movement of each eye, and they have to work well together in order to provide single vision. Unfortunately, though, with TED, the muscles are not uniformly affected: i.e. there is asymmetry with regards to the enlargment and stiffening. And this often leads to the doubling of vision. The muscles cannot work well together to focus on a single point. The eye disease itself progresses through a hot phase, in which symptoms worsen. Then, there is a leveling off, followed by a lessening of symptoms until finally the process stalls. All of this can take anywhere from 18 months to 3 years, on average. Whether or not you go back to your previous vision depends upon how much permanent damage has been done to the eye muscles. But, that said, I was told I undoubtedly had permanent damage, and when everything subsided I was left with only occasional diplopia. Most of the time, I see fine. And the protrusion mostly went away, as well. So, don’t panic. Also, try to understand that unless our optic nerve is being jeapardized by the swollen eye muscles, our doctors prefer not to intervene. The intervention modes available to them have somewhat draconian health consequences, and they prefer the "wait and see" approach.

Do use those artificial tears. They protect your corneas from another problem we have with thyroid eye issues, which is seriously dry eyes. You may not think your eyes are "dry" because you have tear action frequently. But the eyes ARE drier than they used to be.

And, if things are worse in the mornings, you might try putting books, bricks, or blocks under the head of your bed, in order to raise it up a bit. If you sleep on a slanted bed, swelling is minimized. Sometimes swelling is more pronounced in the mornings than later in the day, when yhou have spent time on your feet.

I hope some of this info helps.

[MariaG]

#1169506

Thank you, Bobbi!

Glad to hear of someone who came out of this disease on the plus side. Well done!
The thorough explanation on the eye behavior is very useful. I put great value in understanding the details.
So the worsening eye seems to be somewhat inevitable… I’m still hoping that this is not always the case. Sports and work is extremely important to me and I’ll do anything to be able to keep these activities up and running. This morning was a bit easier than yesterday, although I slept even less today (6hrs total) (and I never had trouble of sleeping before the eye issue started to emerge).

So, is there perhaps something else besides smoking cessation and eye drops that one can do to minimize permanent damage to eye muscles and hinder the course of eye use degeneration? Perhaps some eye exercises? Or maybe someone has an experience with alternative, non-invasive, approaches (e.g. acupuncture)?

I’ve also taken daily dose of glucosamine 1000mg+chondroitin 800mg+cod liver oil 1000mg for the past three months because of an injury (prescribed by ortho, cartilage damage in the knee). The endochrinologist said there’s no harm in that, but I’m not 100% sure, because Graves symptoms first occurred after a month I started with glucosamine and those supplements contain sea creatures.

[Kimberly]

#1169507

Hello – I’ve seen a couple of small studies recently indicating that selenium might have a beneficial impact on TED. However, at least one study was done in an area known to be selenium *deficient*, so it’s not clear whether all patients would get the same benefit. Check with your doctor before starting any new supplements, as selenium can cause unwanted side effects (such as nerve damage) if taken in excessive doses.

http://www.thyroid.org/professionals/pu … 37_5_6.pdf

On the other supplements, you might check with the manufacturer to see if you can get an idea of the actual iodine content, and then run this past your endo again. Most Graves’ patients are only advised to avoid *major* sources of iodine, such as sushi/seaweed.

[snelsen]

#1169508

Hi, i have been dealing with TED for a little over two years now. I have not been very active on the board lately, cause I have been in the Midwest (Iowa) and also getting second opinions at Mayo Clinic and the Univ. of Iowa about the next two proposed surgeries. Unfortunately, all agree that palatal grafts to the lower lids must be done, because of the large amout of corneal exposure I have from retracted lower and upper lids. The corneas are at high, high risk for corneal abrasions, and as long as this situation exists, even if I needed a corneal transplant, the same problem would re-appear because it never left. I dread these surgeries.

My comments regarding your eye symptoms follow:
-if you use many eye drops, try to use some without preservative. Over six times a day.
-if you continue to have eye symptoms, the endocrinologist is not the doctor to take care of your eyes.
You need to explore and find a good neuro/ophthamologist to follow you, if you really have TED.
– this is a different auto immune process entirely than Graves’. It is my opinion that supplements will not impact positively or improve the course of TED at all. However, I have heard that people tried to take flax seed oil, to provide more lubrication in the eyes, but it made no difference at all in my experience. You are already taking cod liver oil, so that might be enough oil every day?

Bobbi gave a very accurate description of TED. As she stated, there is one compelling reason to have surgical interevention at any time during TED, and that is if your optic nerve is being compressed.
In my experience, I have had the worst of everything TED. The strabismus (eye muscle) surgery made my life worth living again, after crippling diplopia. But that is way ahead of the game of where you are.

Take it easy, do notice your eye symptoms. I suggest you do realize that if you do have TED, this is not for the endocrinologist to manage. It is completely out of their field, other than to suggest eye drops for dry eyes.
Ihope all your eye symptoms are mild or disappear.
Shirley

[MariaG]

#1169509

Hi!
Thanks, Kimberly! I’ll check about selenium with the endo when I get a hold of her. I checked the other supplements as well and those are luckily iodine-free.
I also kept the head more elevated at night and even though the swelling was the same, I felt less pressure and even double vision didn’t last as long as yesterday.

Snelsen – thank you for your input and I hope things will work out for you soon!
I think I currently use drops w. preservative, so I’ll switch now.
The closest free ophthalmologist time is at least two months away and I need a referral from the endo (who is hard to get hold of). That’s why I’m searching for the info on my own. I’ll book the time, however, since this cannot hurt in any case.

I’m still looking for eye exercises to suppress/control diplopia. Because if the cause is weak muscles, exercise seems to be the logical approach (a muscle is a muscle, right). Couldn’t find anything good and free online though yet.. On the other hand, sometimes the muscle needs rest (and my eye does feel somewhat tired most of the time) – so I’m still not sure whether to exercise or not. Any advise would be helpful ” title=”Smile” />

[gatorgirly]

#1169510

Hi Maria,

When I first saw my neuro-ophthamologist, he reminded me that the TED issue is the muscles and tendons behind my eyes, thus to "take it easy" while they were severely inflamed. Lifting weights causes one to exert, and while we might not notice, we’re definitely straining our eye muscles – along with other muscles – when we strenuously exercise. Additionally, I’m on a really high dose of prednisone – which is doing a great job of controlling my symptoms but makes me feel more hyper than I did was I was undiagnosed (even though I’m newly hypo) – so exercise is not an option right now… other than long walks with my dog and running around from hospital to hospital for work. That being said, I’d be very interested in what you find out about eye exercises and exercise in general during active TED. I’m looking forward to gradually weaning off the prednisone and getting my pre-Graves body back. I’m only 26 and I feel 76!

By the way, congratulations on quitting smoking! It can only do you good on your Graves journey.

[snelsen]

#1169511

Just a comment about eye muscles. What happens, is that the process of antibodies attacking the eye muscles, is that they become fibrosed (thicker, not able to expand and contract as they should.) Thus, vision is compromised by varying degrees of double vision, depending on which muscles are affected, and how much resulting in double vision (diplopia.) They lose their elasticity, and at the same time, become larger, creating pressure around the eye, a mild result being bulging of the eye. Or a more serious factor is when there is simply not enough room in the orbit for all that was intended to function there because of the swelling, then there can be pressure on the optic nerve (called optic neuropathy.) If this pressure is not relieved, it can result in blindness. That is why, if someone really has TED, it is a good idea to have a neuro/eye doc involved, to continue to check your visual fields. Diplopia can be monitered by a different doc, an eye surgeon who does strabismus surgery (way down the road in the inactive phase, if this is needed. In the meantime, they can prescribe prisms, which sometimes helps with the diplopia.

A similar thing happens in pulmonary fibrosis, where the lungs cannot expand and contract as they should.

Your question about eye exercises is an interesting one. My experience is that the fibrosed muscles are not able to expand and contract to degrees, so that in general, I don’ t see how eye exercises would help. Interesting subject.
Shirley

[MariaG]

#1169512

Sorry, Gatogirly, to hear about your hardships, but it’ll get better gradually – hang in there.
I’m certainly not an expert nor have I personal experience on exercising during active TED (as mine is just mild right now), but my story with Graves and exercise is pretty straight forward – I try to work out every day if I can and try to be very careful – keep the heart late way below cardio level.

In June, while I was not aware I had Graves, I took up swimming since my knee injury currently doesn’t let me to jog, inline skate, bike, etc. Never liked swimming before so I can’t say I was a good swimmer, but not a bad one either. At first, the swimming was extremely hard – I couldn’t freestyle swim more than 25m at a time. I thought it was because I was a lousy swimmer so I worked on my technique for a month.
At the same time, I was constantly tired and my heart started to beat very fast all the time. Not knowing the reason (and partly blaming my excessive smoking), I waited three weeks before making an appointment with my GP and continued to visit the pool. GP instantly suspected hyperthyroid activity and blood test confirmed it. My CBC was also very bad at the time (e.g. HGB 113), hence the fatigue and lousy swim.

Exercising is one of the first things I always ask when I got health issues. When I was first diagnosed, my GP never advised against it, but said to listen to my body. So I took a 3-week break from the pool and was just walking for 15-30min a day.
After I had been taking beta blockers and Tiotil (for the thyroid) for three weeks I felt very healthy and returned to pool and went to the gym as well (but mostly for my knee rehab). I was a completely new person – swimming was easy and effortless. New tests were also taken a week later and it showed great improvement (see my first post). I was not training, I was just swimming slowly and tried to make sure my pulse wouldn’t go beyond 130 (as overdoing it can damage one’s heart).
I asked my endocrinologist about exercising as well and she first said no, but when I explained my point of view, she said I should just lower my usual training load.

Today I feel as healthy as ever (except for the eye issues) and since Friday when I quit smoking, my life has taken more huge steps for the better. I’m very happy about not feeling addicted all the time (supposedly a cigarette affects the body for 20minutes and in between the body is constantly in withdrawal), I breathe freely and I’m a lot less nervous than before. I believe some of that could be due to the nicotine patches. The overall health though is because the thyroid drugs have worked well (my T4 was already five days ago slightly below norm, although TSH is 0.04, but as I read, it takes time for TSH to level itself). I take 3x less beta-blockers than in the beginning and will probably stop those too in the coming days
I’m still swimming while trying to keep the pulse between 110 and 130. I’m thinking I’ll begin with actual heavy training only after I’m completely healed (I understand that it can take years). Right now I’m just enjoying the slow pace, fine tuning my technique and falling in love with a sport that is new to me.

I think that it is good to exercise by being very-very careful and never overdoing it. Once the feeling is better, the person will naturally do more, but one has to make sure to take baby-steps, no sudden increase in exercise would be good. Slow and steady…
All this is personal experience and not expertise – I’m not giving advice, I’m very poor at sports theory and I’m not a doctor.

On the eye exercise matter – Since I don’t have my own ophthalmologist yet, I asked a random one (describing the condition in details) and he said to look for the eyeaerobics online. It wasn’t explicitly clear whether he actually recommended it, but he sure wasn’t against eye muscle exercises. I’ve looked a bit, but during five minutes couldn’t find anything for free. On the other hand, the answer included a thought that once my thyroid is under control, the eye symptoms will reside (although this board proves otherwise). Thus, this issue is still unresolved.
Reading the previous post by Shirley I’m thinking that the good side with eye exercises is perhaps the possibility of hindering process rather than curing it. However, first question is whether eye exercise would be harmful. If not, it wouldn’t hurt to try.

I also changed eye drops to those without preservatives. They do feel a bit more effective. However, they are 10x more expensive (6x per day = $60 a month), so I wonder what exactly is the benefit compared to those with preservatives and why Shirley recommends more than 6x a day?

[Kimberly]

#1169513

Hello – The drops with preservatives can be irritating to the eyes. Also, with Graves’, our tear production decreases and the tears tend to evaporate faster, due to lid retraction and/or proptosis (bulging), so that’s the reason for the more frequent application.

Gels can last longer, but the down side is that they will cause blurred vision for quite a while! I generally only use the gels at night.

[runbarb]

#1169514

I am new to this forum and have had a lot of trouble trying to post a message. I have ocular graves disease and am really suffering with double vision. I have a patch over one eye but the other eye is now cloudy. I also have pain in both eyes. I became aware of the Graves eye problems in March 2011 with redness, blisters in my eyes and pain. Now I have a right eye that points inwards so I have double vision. Does anyone have suggetions for how to soothe the "good" eye so that it keeps seeing? I wear a patch but it is awkward and everyone stares at me. Any other things to suggest? How long will double vision be a part of my life? I am already sick of it and am very depressed because of the worsening condition. Thanks.

[Kimberly]

#1169515

Hello – The eye involvement tends to run over a course of 2-3 years. Some patients will see an improvement in symptoms once Thyroid Eye Disease runs its course; if you are still having issues once your symptoms have stabilized, there is a surgical procedure (strabismus surgery) that can correct your double vision. Strabismus surgery is not recommended until your symptoms have stabilized, as you don’t want to have one surgery, and then have your eye situation change *again*. The waiting period can be very frustrating, but it’s helpful to be in an environment like this bulletin board where everyone understands what you are going through!

Have you tried prisms for your double vision? There is an option to have this type of correction included in an eyeglass prescription, or there are temporary prisms that can stick right on your glasses. This doesn’t help much if your double vision is constantly changing, but it *can* give some patients relief.

[runbarb]

#1169516

Kimberley: Thank you for your answer. Sounds like a very depressing time ahead for me. If double vision lasts 2-3 years I am just at the beginning. My doc doesn’t seem to have any recommendations for me. He has mentioned prisms but says that with my eyes changing so much that until I am more stabilized it would be fruitless. I am getting some as I am about to take a trip and want to be able to see. He has alerted me that the prisims will be the stick on type and will cost about $100. They won’t be useful for long as eyes are changing.
What happens if both of my eyes turn inward? Right now just one is but I fear other is moving as well. I am petrified. Is the pain I am experiencing the muscles becoming more inflamed and thus worsening my ability to see? Other than prisims I have no other suggestions from the opthamologist. He says steroids are a possibility but with side effects is not giving to me now. Radiation into eyes is also possibility but he htinks I am not bad enough. I don’t know where the line is to be bad enough. But,I think I am pretty bad. Surgery has been discussed also but is way down the line as things must stabilize. But I believe two surgeries are recommended, one to pull the eye back into place that has turned inward then one to correct bags, retracted eyelids and puffiness. Has anyone had the surgery to pull the eye back? My doc said he would send me to a pediatic opthamolgist for this surgery as they are more used to performing this surgery since kids are more likely to have crossed eyes.

I guess the other aspect of all of this is that I am so depressed about my condition. I have always been super healthy and am very active. I am a marathon runner and am athletic. This disease has totally changed my lifestyle and i am trying to cope with that. I still run but very slowly and carefully as I am scared of falling. I do not run with a group any longer as I am unstable with a patch on and weave and don’t want to ruin someone else’s run. I have terrible down days when I sob and am so depressed. My spouse has been wonderful and I try not to get down as it effects him too. But, it is a struggle every day. I know no one else around me who has this disease so feel isolated. WHile my brother had this as well he did not have such a severe case and was treated with prednisone and got over it rapidly. So he can’t offer any advice on how to cope as he got well in just a short time.

I am worried about being able to drive once daylight saving time ends. Now I can see fine to drive in the light but am concerned about driving home from work at night in the winter. Suggestions?

How do you cope with this disease? I am struggling.

[Kimberly]

#1169517

Hello – There was some research done out of Shiley Eye Center a couple of years ago that showed that Thyroid Eye Disease absolutely has an impact on our emotional outlook. In fact, for many patients, the *appearance* changes are even more distressing than actual changes in vision!

I believe that others here have discussed the driving issue. You might try a search (the box is in the top left-hand corner of the screen) for "drive" or "driving" or "night" to see what others have had to say on the issue.

Learning as much as you can about the condition can be helpful, as can surrounding yourself with people who understand what you are going through. This board is a great resource, as is the Foundation’s Facebook page at: https://www.facebook.com/pages/Graves-D … 2413847565

You might also check to see if there is a local support group near you: http://www.ngdf.org/pages/11

The Foundation’s annual patient & family conference, which will be held in Boston Nov. 4th-6th, is also a great way to learn and to connect with other patients and family members. Registration should be up this week.

Finally, know that there *is* an end process with TED. It’s crappy while you are going through it, no question. But once the disease has stabilized, there are options that can help restore both the appearance *and* function of your eyes.

[msmanatee]

#1169518

Hi runbarb. I’ve been in the throes of moderately yukky TED, diagnosed in June. I have some double vision (up and sideways). Driving is an issue. I do a couple of things to (hopefully!) lower my chance of an accident. First and second, drive with extreme caution and as rarely as possible. I have not driven on a highway (above 50 mph) since I got TED. I hope you will experiment with night driving a little bit now, if you can stay safe. I’ve learned that certain situations call for extra caution. For instance, when I want to switch from the left to the right lane, I can’t throw my head back to glance to make sure no car is sneaking into my blind spot. When I do that, my eyes wobble and it’s very disorienting. Instead I plan that lane shift way out in advance and do not look back (only use the mirrors). I also find having someone in the car with me very helpful (he’d drive but is only 14 ).

You might consider talking to your doctor again about Prednisone. I hate the side effects but it’s worked for me somewhat. I have less pain, less redness, less grittiness, and especially less photosensitivity than I did before taking it. I have been on it since June 15 and am tapering down now since I have been on it more than the "normal" amount of time. It’s not a magic bullet but might stall your symptoms. One eye doc said I’d need orbital decompression "very soon" two months ago. Knock on wood, he may be right but so far so good. I’m also eating a couple of brazil nuts each day (selenium) for swelling and think it helps a little. I’m sorry you are dealing with this but you are definitely not alone.

I hope you will feel better soon.

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