[WWWI2]

#1059665

I was diagnosed with Graves’ in August 2012. This doctors “seems” to know something about Graves’. However at my last appointment I asked him about Graves’ Opthamolopathy. I am having problems with my eyes, red and gritty but no protrusion. He stated that there are a couple of different types of eye problems that people with Graves’ can encounter and one doesn’t necessarily mean I’ll get another. This made sense to me as that’s the same message I’ve gotten here.

However, he then added that since it doesn’t appear that I have Graves’ Opthamolopathy with protruding eyes now, if I don’t have it by this point, I won’t get it, that it would have begun to develop by now. However, I’ve read people developing it far into the disease and also I’ve read that RAI increases the chances of of eye issues, specifically Graves’ Opthamolopathy.

Where does the truth lie?

Thanks!

WWWI2

[smtucker]

#1176617

You don’t say what specialty the doctor who “seems” to know something has. I would request a referral to an Opthamologist [one with a fair amount of Grave’s experience] so that they can do a baseline set of measurements. Could be helpful later on.

Hope this helps.

[WWWI2]

#1176618

Sorry, he’s and Endo. I have been to an Opthamologist prior to seeing this endo.

I wrote this in another post but that opthamologist told me that whether he could see the whites of my eyes when I looked directly at him was his diagnostic criteria for Graves’ Opthamolopathy. That seemed a little curious to me too.

[smtucker]

#1176619

Well, that is one way to diagnose a disease. Odd. Graves’ doesn’t seem to be this doctor’s area of expertise.

[Kimberly]

#1176620

Hello – It’s much more *common* for the eye disease to occur at the same time as the thyroid issues, but eye involvement can show up years later (which happened to Shirley), or more rarely, the eye issues can show up *before* the thyroid is affected.

[snelsen]

#1176621

Hi WWW, I do recall your other post, and not sure if I did/did not reply then. I have not checked before writing now.
Yes, the one eye doc with the comments of the “whites of your eyes” seems pretty weird to me. I can see the “whites” of every eye I have ever seen. There the pupil, and the rest of the eye is white! Duh.

I think if you do a little reliable reading, or even browse some posts here, you will find that red and scratchy (probably cause they are dry…) eyes are fairly common with Graves’. You treat the symptoms, primarily with preservative free eye drops,and I found warm packs were very comforting.
If you see that your vision is CHANGING, and you feel that your eyes are “worse” not better, it is good time to find a good eye doc, i recommend a neuro ophthalmologist, for a baseline exam. If you decide to do this be sure to mention you have Graves’ and would like to rule out TED, and/or have a baseline exam, so you have an objective measurement of your eyes.

Does this sound like a reasonable plan to you?
Shirley
And, yes, there is valid evidence that RAI can exacerbate TED, usually when a person has some eye changes before the RAI.
And, double yes, people can develop TED ANY TIME AT ALL the rest of their live after having Graves’. As Kimberly noted, I am a poster child for that.
My TED (which i knew absolutely NOTHING about, despite being an RN, and having Graves’ for years) presented itself over 4 decades later. So lucky that it did not interfere with my work career by happening sooner.
As it was, it DID interfere with my work, and I had to quit because of the double vision.. But I had already retired twice.
Write if questions
Shirley

[Bobbi]

#1176622

I didn’t see any comments above about “whites of the eyes,” so I’m not quite sure what Shirley meant. But, in GENERAL (a broad caveat) when there are questions about whether our eyes are truly protruding or whether we are suffering from upper lid retraction which is more commonly associated with “being” hyperthyroid and has nothing to do with TED, the whiteness visible in the eyes is a casual guide. Or at least it was when I was going through tED. When we look at your eyes in a mirror, typically we do not see the white of the eyes except at the sides of the colored part. If you can see the white ABOVE the colored part as well, it may mean that there is “lid retraction.” This is a situation in which the muscles that work the upper eyelids spasm, or tighten, which causes the lids to be pulled back, exposing more of the eyeball. If, on the other hand, you can see the white of the eye UNDER the colored part of the eye, it is more suggestive of actual protrusion. I’m truly not sure how scientifically valid this is, but it may help to explain whatever comments were made to you, WWWI2, about seeing the whites of the eyes.

[gatorgirly]

#1176623

WWWI2 wrote:

Sorry, he’s and Endo. I have been to an Opthamologist prior to seeing this endo.

I wrote this in another post but that opthamologist told me that whether he could see the whites of my eyes when I looked directly at him was his diagnostic criteria for Graves’ Opthamolopathy. That seemed a little curious to me too.

Bobbi – that’s what Shirley was responding to.

WWWI2 – Endos are familiar with TED/Graves’ ophthalmopathy because they see patients with it. In some areas, there are no neuro-ophthalmologists but that’s really who you should be seeing. At the very least, please don’t go back to the ophthalmologist who uses eye whites as a diagnosing factor. When I was diagnosed, it was a combination of obvious symptoms (protrusion, redness, swelling, etc.), eye pressure (a simple test in the ophthalmologist’s office), photos of the tissue behind my eyes (I apologize for not knowing the name of this test – I looked into this machine in another room with another office employee), a visual field test (the one where you sit in front of a concave dome and click a button whenever you see a light), and an MRI scan of my orbit (both with and without contrast). If you have insurance and think your vision or protrusion is changing, press for these tests.

The dryness and grittiness was common before I had TED, but after my Graves’ diagnosis. I found it hard to wear contacts after a few days but switching to dailies helped, as did drops and protecting my eyes from the sun and bright lights – even indoors I wore sunglasses.

[WWWI2]

#1176624

I am not one to trust a doctor blindly. I’ve had my share of misdiagnosis and severe consequences as a result, including losing my gallbladder for no particularly good reason.

That said, this site being an amazing resource, I have to trust, at least to some degree, a doctor. This is my second one (and most likely not my last). He has been practicing for many years, comes highly recommended (although more for his years of experience as an Endo, not specifically Graves’) and when I asked him his experience with Graves’ he told me of his many, many years working with Thyroid Cancer patients ( tho I’m still not sure what the connection to Graves’ is).

The things I find concerning are that he has told me not to worry about when I take the levothyroxine and methamizol (night or day, empty stomach or not), that it’s not possible to get TED, specifically Graves’ Opthamopothy if I don’t already have it. Additionally, when he discussed my options (ATD’s, surgery, RAI) he presented surgery as nothing but risk and RAI as the real only way to go.

And probably the thing that is concerning to me most is that he has given me a year to go into remission. I was diagnosed in August and in November, my TSH hit normal range on one test (it has now gone south deep into hypothyroid land). That is when he “started the clock” on my one year. I have yet to be stable and my clock has started (no pressure there). The more I read the more it seems that it has more to do with TSI ranges in order to determine when to wean of the meds to see if remission is possible. Not some arbitrary TSH test. But I could be wrong.

He seems to be receptive (sort of) to my input, but seems to have my path already determined. If he’s right, I’m good with that. Perhaps he just knows more than I do and has years of vast experience. But, I’m really scared I’m going to get railroaded into something because either I don’t know enough to stop it or he “knows what’s best for me”. It seems when he talks to me, he’s given this same discussion to many other people over and over. And while he ‘seems’ receptive, I am not entirely sure he’s hearing me.

My gut says to hold on until decisions have to be made, hope he can get me stable by then and then when the clock strikes the time to make a decision…RUNNNNN

I just feel like I don’t have the capacity to deal with this right now. This is my 3rd disease diagnosis in 4 years (not counting the ruptured appendix in July) I’m scared, I’m exhausted and I’m running out of organs.

WWWI

[Kimberly]

#1176625

WWWI2 wrote:

The more I read the more it seems that it has more to do with TSI ranges in order to determine when to wean of the meds to see if remission is possible. Not some arbitrary TSH test.

Hello – Wow, you have certainly had a lot to deal with. I had enough of a challenge just dealing with ONE diagnosis!

Obviously, you will need to make the call as to whether to stay the course with this doctor.

If you haven’t already, you might review the latest treatment guidelines from the American Thyroid Association and American Association of Clinical Endocrinologists, which you can find in the “Treatment Options” thread in the announcements section of this forum. That document goes through all three options in an unbiased way and also addressed length of anti-thyroid drug treatment (they recommend 12-18 months, although they leave the door somewhat open for longer-term therapy) as well as the use of antibody testing prior to withdrawal of ATDs (they recommend TRAb testing prior to withdrawal). It might even be helpful to bring select pages to your next appointment as a starting point for discussion with your doc.

Take care!

[WWWI2]

#1176626

Kimberly,

That was very helpful. Thank you. I believe I read it when I was first diagnosed but I understood even less then I understand now. so again, thank you.

It appears that my TSH should be in the normal range and a there is a secondary TRAb test prior to attempting remission :

“Measurement of TRAb levels prior to stopping antithyroid drug therapy is suggested, as it aids in predicting which patients can be weaned from the medication, with normal levels indicating greater chance for remission”

This is really good to know. They also, as you said, suggest 12-18 month trial with ATDs, along with the test results as mentioned above at a year (or 18 mo), try for remission, potentially for a year. If that doesn’t work, there is no reason not to try another 12-18 month trial of ATDs, if that’s what I so choose.

And while I couldn’t find any percentages about GO (Graves’ Opthamopathy) starting or not starting AFTER Graves’ has been diagnosed, I’m going with ya’ll on this one.

Despite that he told me it didn’t matter when I took the meds, I’m following what I’ve read ON THE BOTTLE.

It also said it’s essential to get the levels stable as quickly as possible and while I don’t exactly fault him entirely for letting me hang in the wind for so long, I do think I am less of a priority than I should be. If he can get me stable, I’ll stay with him. If not I’ll find another, but that requires lots of waiting until there’s an opening, new tests, waiting for lab results, waiting for the meds to kick in so hopefully stability is somewhere soon in my future.

I have asked him how much flexibility he has with this “1 year clock” and he says he could “spontaneously” give me an additional month or two. So I think that means if (and when) I’m not ready for “the final solution” I will move on then.

But I do feel calmer and more informed. Thank you

WWWI

[catstuart7]

#1176627

WWWI2 wrote:

I just feel like I don’t have the capacity to deal with this right now. This is my 3rd disease diagnosis in 4 years (not counting the ruptured appendix in July) I’m scared, I’m exhausted and I’m running out of organs.

HUGS to you! While I’m not running out of organs I can relate to feeling like it’s all too much. Like the level of smartness and assertiveness required of me to avoid the pitfalls may just be too much given how I feel most of the time. Still it sounds like you are doing an awesome job learning about GD and exploring your options, I don’t think you’ll get railroaded and I won’t be either. Stay strong sister!

[WWWI2]

#1176628

catstuart7 wrote:

WWWI2 wrote:

I just feel like I don’t have the capacity to deal with this right now. This is my 3rd disease diagnosis in 4 years (not counting the ruptured appendix in July) I’m scared, I’m exhausted and I’m running out of organs.

HUGS to you! While I’m not running out of organs I can relate to feeling like it’s all too much. Like the level of smartness and assertiveness required of me to avoid the pitfalls may just be too much given how I feel most of the time. Still it sounds like you are doing an awesome job learning about GD and exploring your options, I don’t think you’ll get railroaded and I won’t be either. Stay strong sister!

I could not have put that better myself CatS (I literally could not have). Of the many things I have lost over the last few years, I miss my brain the most

Thank you for your confidence and I believe (and hope) you are right

Thank you my fellow She-warrior !

WWWI

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