[lalcomputers November 3, 2013 at 8:44 am Post count: 1]

#1181059

Saw two different ocular surgeons. Second one took one look at me and made me promise not to let anyone perform surgery to fix this. Said the disease may take 3 years to run its course, but will eventually correct itself. In the meantime, eat an anti inflammatory diet. Suggested “the inflammation free diet plan” by Monica Reinagel. I thought I was already eating very anti inflammatory, but think there’s more for me to learn. Thyroid removed 6 years ago. Was shocked to know that Graves was still manifesting symptoms. Feel depressed, this is a lifelong challenge. Blessed for good medical advice. Watch what you eat!

[shakira7 November 3, 2013 at 2:33 pm Post count: 82]

#1181058

Hi lalcomputers, thanks for your reply. When did you visit your second ocular surgeon? Was it after your thyroidectomy which you had done 6 years ago or was it before? Do you see any progress or changes, if your eye issues have been more than a year?

I will rule out RAI for my option.
If ATD no longer works, then I will consider thyroidectomy.

[KimberlyOnline Facilitator November 6, 2013 at 10:00 am Post count: 4294]

#1181060

@lolcomputers – Welcome!

@shakira7 – I have eye swelling as well, so I know how frustrating it is to have your appearance change significantly. But it seems that your endo realizes that you have gone out of your way to educate yourself about this condition and that he values your input on your treatment. To me, that is a good thing!

[Shugie53 November 6, 2013 at 11:12 am Post count: 17]

#1181061

My eyes used to be my only good feature so I guess karma is teaching me a lesson. Now they are mismatched, one eye bulging & same eyelid swollen.
I have literally begged my optho. and family dr. to let me try any of the things I’ve read about online i.e. steroidal or non-steroidal eyedrops. I also read of a nose spray that might help.
when I had a terrible allergic reaction to the methimazole right after my first 3week blood test, I was put on the prednisone pack for 7 days. by the 4th day my eye looked normal like it used to.
but of course when I finished them & the hives were gone I am not allowed to take steriods b/c of the bad side effcts.
I have a prescription for prednisolone 1% eyedrops but Im afraid to use them . I think my family doc just got tired of me begging & he said they arent known to help but if I want to try go ahead so I dont know

[shakira7 November 6, 2013 at 7:33 pm Post count: 82]

#1181062

@Kimberly, how long have you been experiencing eye swelling? You said you’ve been on Methimazole for the past 6 years, so I thought you’ve been doing well without any side effects.
Did you notice any change or any improvement on your eyes during those 6 years? Or did it get worse?
I thought the puffy eye lids were supposed to go away within maximum 3 years.

Thanks for your compliment – it seems like, for Graves Disease, it’s the patient who need to take control of her/his own treatment, since no one has the same prognosis. Everyone has a different path. Also, there’s only 3 ways to treat this symptom.

I’ve been on this medication for about less than a year – and on a very small dosage. Yet, my eyelids have swollen.
I’ve been reading on this forum, that the puffy eyelids are supposed to cool down anytime btw 6 months – 3 years / my opthalmologist said 3-4 years.

I wonder if it’s the side-effect of Methimazole that my eyelids are swollen, mainly the upper right eyelid.
I have a new hobby now – taking profile shot of my eyes every night, like if I have nothing else to do after work.

My plan is to wait until 2016, and if nothing changes, then maybe blepharoplasty would be sth to look into.

I’ve been on a lower dosage of Methimazole since Oct 25. – 5 mgs / 3 days. I will get my blood test done this Friday, and see how my TSH is doing.

---

@Shugie53, I’m so sorry to read about your case and your eyes.
I will ask what my family doctor thinks about prednisolone 1% eyedrops, and maybe I’ll go ahead and try them.

Thanks both of you,

Shakira 7

Graves Disease since Sept 2012
Tapazole 5mg a day from sept 2012 – march 2013, TSH became 6.4
april – june 2013 stopped Tapazole and became hyperthyroid again, TSH 0.02
Tapazole 5mg /every other day from july – october 2013, TSH returned normal
Tapazole 5mg/every 3rd day since last week of october.

[KimberlyOnline Facilitator November 7, 2013 at 10:56 am Post count: 4294]

#1181063

Hello – I suspect that the time frame that you heard was for the eye issues to become stable, not necessarily to disappear. (Although some patients do see some improvement once the active stage is over).

I started getting eye swelling about a year after diagnosis, and still have it 5+ years later. I’m not happy with it, but not yet unhappy enough to see a surgeon right now — especially since my current insurance wouldn’t provide any coverage! I also see quite a bit of fluctuation in day to day swelling, so I probably wouldn’t be a good candidate right now anyway.

Edited to add: TED runs its own course from the thyroid component of Graves’; I have not heard of eye swelling being a side effect of methimazole.

[shakira7 November 8, 2013 at 10:17 pm Post count: 82]

#1181064

Hi Kimberly, thanks for getting back to me immediately.
It sounds like you and I are in a similar Graves Disease situation; I’m also on Methimazole without any side-effects. 2 opthalmologists confirmed me that I do not have any signs of TED.
So, if I understood everything well, you also have puffy eyelids, but you do not have any TED happening to you, right?

I admire your patience, as I’m honestly becoming depressed.
Everyday I wake up and notice my puffy upper eyelid not getting any better. I look at myself of last year or before, and my healthy looking face is gone now.
Thank god I do not have a husband or a boyfriend, cause I would told my them by now that I’m going solo due to my medical condition.
I have started withdrawing myself from social life, as I don’t feel good about this whole puffy eyelid issue; it’s really making me unhappy.

Seeking a counselling will not be the solution; the solution to this is getting my original look back either with blepharoplasty once things have become stable, or the eyelid goes back to its original place on its own (if it were to happen).

I’m glad I do not work with public, and I work most of the time autonomously alone in my corner. This helps, as working with public would have been the worst job for me with what’s going on now.

I’m looking into Fall 2015 – when I can possibly go for an eyelid surgery.
That’s 2 years from now, and it will be 3 years of living with Graves Disease.
If I had a lot of money, I would have gone to get one right now and then again in 2-3 years from now.

I am now understanding how plastic surgery resolves the psychological aspects of people having issues with appearances.

Thanks again, Kimberly.

Shakira7 depressed with her horrible eyelids.

[KimberlyOnline Facilitator November 11, 2013 at 11:39 am Post count: 4294]

#1181065

shakira7 wrote:

2 opthalmologists confirmed me that I do not have any signs of TED.
So, if I understood everything well, you also have puffy eyelids, but you do not have any TED happening to you, right?

Hello – I absolutely believe that my swelling is Graves’/TED related. I also have eyelid retraction, dry eyes, and light sensitivity. TED has a whole variety of associated symptoms, so maybe the ophthalmologists meant that you weren’t experiencing bulging or double vision, which are the worst of the symptoms? Hopefully, both docs had good knowledge of Graves’ and TED…if not, perhaps a 3rd opinion would be helpful.

One doc at our Chicago conference mentioned the importance of bringing photos to your initial eye consult, *especially* photos from when you were much younger. He actually showed some actual examples of people who didn’t *look* like they had major TED issues, but when he showed photographs of when they were younger, you could see a huge difference. Perhaps this would help?

[shakira7 November 11, 2013 at 8:34 pm Post count: 82]

#1181066

Hi Kimberly,

Both opthalmologists seemed quite knowledgable in TED symptoms, however, I should have brought photos of myself from last year or years before.
Yes, the eye area looks different – swollen eyelids change the entire appearance.

In your case, was swollen eyelid the first symptom of TED, and then the rest followed afterwards? Or did they all happen at around similar time?

So far, it’s only the eyelids that are swollen as well as a bit of under eye bags. I do not have other symptoms you mentioned, but this concerns me a lot, as you can see.

5+ years? Wow, I admire your patience, cause I would have lost it by now.

I watched a YouTube video yesterday – the seminar/conference by Dr Catherine Hwang, Thyroid Eye Disease
http://www.youtube.com/watch?v=OjFz0hIamU8

She thoroughly explained the entire phase of Thyroid Eye Disease, so now I’ll just have to sit and watch how my eyelids evolve.

I realized that the plastic surgery that Dr. Hwang mentioned in the seminar, is not the blepharoplasty. She refers to blepharoplasty, for fixing the eyelid retraction. At the very last phase, some patients go for Botox around the eyes.

Actually, I’m an Asian descendant, so I don’t have the double eyelid like others. Therefore, I won’t be able to tell if I ever get an eyelid retraction.

In any case, what I meant by blepharoplasty, is not the double eyelid surgery that is popular in Asia, no, but rather the normal blepharoplasty where the surgeon can remove the excessive fat that were never there in the past. – and get my original look back one day. Hopefully in Fall 2015, that would be my 3 year anniversary of Graves Disease.

Thanks, Kimberly!

[KimberlyOnline Facilitator November 13, 2013 at 8:34 am Post count: 4294]

#1181067

Hello – The swelling around the eyebrow area was the first noticeable symptom for me…I’m not sure exactly when the eyelid retraction started.

So glad you found the video from Dr. Hwang – she gave a great presentation at our San Diego conference!

[shakira7 November 17, 2013 at 2:24 pm Post count: 82]

#1181068

Thanks, Kimberly, for being so patient with my questions and getting back to me on them. I’ve been obsessively taking pictures of my profiles since september this year, and so far, it’s the eyelids that have changed.
It will be a long 2 years for me, to see the TED active phase to be over.

Shakira7

[shakira7 March 7, 2014 at 8:09 pm Post count: 82]

#1181069

Hi Kimberly,

Quote:

Hello – I absolutely believe that my swelling is Graves’/TED related. I also have eyelid retraction, dry eyes, and light sensitivity. TED has a whole variety of associated symptoms, so maybe the ophthalmologists meant that you weren’t experiencing bulging or double vision, which are the worst of the symptoms? Hopefully, both docs had good knowledge of Graves’ and TED…if not, perhaps a 3rd opinion would be helpful.

One doc at our Chicago conference mentioned the importance of bringing photos to your initial eye consult, *especially* photos from when you were much younger. He actually showed some actual examples of people who didn’t *look* like they had major TED issues, but when he showed photographs of when they were younger, you could see a huge difference. Perhaps this would help?

Well guess what?
I went to see an oculo-plastic surgeon this morning, a 3rd eye specialist that I consulted. I brought him my pictures of before, when my eyelids were not swollen & when I did not have undereye bags.

He diagnosed a very mild TED in my eyes. I am too young to be considered “aging” as the cause of my eyelid swelling. He also noticed a very mild eyelid retraction.

I was told to come back in 3 months, since he would like to see how my eyes progress, although he highly doubts that it will get any worse at this point.

Kimberly, you were SOOO right about this, to bring my pictures & to seek a 3rd specialist. I actually felt so relieved, that finally, I found the right doctor who knows what he is doing and who knows well about TED.

It seems like most opthalmologists are not able to diagnose this problem unless your eyes are protuding.

I also started taking selenium since January, and although I’m not sure if it’s due to that, but it seems like the swelling seems to have slightly reduced.

I thought I was going to get depressed when he told me I have very mild symptoms of TED, but I actually felt relieved to have found the right specialist who is within the city I live…no need to fly over to US.

Thank you so much, Kimberly, for your advice.

All I’m waiting now, is my doctor’s ok signal one day, that I can go ahead and do the blepharoplasty to get rid of the fat accumulated around the eyelid.

[De March 9, 2014 at 2:08 pm Post count: 9]

#1181070

I would also like to know why so many ophthalmologist don’t think of TED when patients present themselves with obvious symptoms of this condition. After I was finally diagnosed in January, 2014 with TED I was told by three ophthalmologist that this should have been caught by the other three ophthalmologist. Very frustrating.

[KimberlyOnline Facilitator March 10, 2014 at 12:36 pm Post count: 4294]

#1181042

@shakira7 – SO glad to hear that you finally connected with the right doctor! One thing the docs will need to know before proceeding with any surgery is whether you are in the “stable” phase of TED – i.e., symptoms aren’t getting better or worse. I know that you are eager to put all of this behind you, but your new doc might want to do some additional monitoring just to make sure. Definitely keep us posted!

@de – There is a group called the International Thyroid Eye Disease Society that is committed to supporting research and education regarding TED. They just sponsored a physician education event late last year at the American Academy of Ophthalmology meeting, which is a huge conference for physicians. Also, the European Group on Graves’ Orbitopathy’s Amsterdam Declaration (which the GDATF signed) is a project that seeks to decrease tune time to diagnosis. So hopefully, the situation will improve! You can find more at the following links:

(Note on links: if you click directly on the following links, 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://thyroideyedisease.org/

http://www.eugogo.eu/amsterdam_declaration.php

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