[popscene01]

#1060161

I just have to ask. Since my TT & my last update, just from stuff I have read I am not sure if it’s my TED or something completely unrelated but there is like 1 TED specialist in the area, who I am seeing, who is a ***** to get a hold of & so I’m really not going to have answers until I go back in in mid September. Not only that but it’s a learning facility with our local university. So, doesn’t cost me a dime or hit my insurance (YAY!) but I have like 5 students, a resident, and the doctor in there all poking at my eyes and asking ME a million questions too. So I think I just get overwhelmed when I’m there and even forget to ask what I need to.

So going back before my TT, I used to have terrible irritation & grittiness. I also have bad allergies (which is hard to monitor now being on prednisone) so I was put on Patanol in each eye 2x a day & Lotemax in each eye 2x a day, though the most trouble I was having as far as tearing & vision was with my left eye. I never had a problem with bulging eyes, or you just couldn’t tell by looking at me. They way it was described is that it was caught in time & I was “medicated” so it wouldn’t get worse.

Now what I’ve had the TT I’m tapering off the prednisone, currently at 20mg, Patanol dosing in the same, Lotemax is 1x a day in each eye. Here’s the issues, I am having INTERMITTENT blurriness in both eyes. I do have a slight astigmatism in my left eye which I know can cause my sight to be blurry but it has gone more from blurred to almost double vision, that’s pretty constant in that eye. I had glasses I used for reading & writing w/my astigmatism but I’m at the point where I just can’t even use those anymore.

So I know the blurring & double vision can be common for TED but is it common to go in/out, kind of like an astigmatism does? I mentioned my left eye is just a constant mess but I am having more trouble with my right eye now. I don’t know if it’s the TED or just the strain from my left eye’s vision getting so bad. Floaters seem more common now also in both eyes.

I guess I’m just all really confused considering my thyroid is gone, don’t have Graves’ anymore but still feeling awful as hypo after the surgery. And I KNOW I’ve read once you get the TED it becomes its own separate problem. UGH!!! I’m looking for information or good questions I can ask my specialist or come in knowing so I don’t leave even more confused and without answers, or help me with a next step action plan…

…if that makes sense!?

Sorry this is kind of all over the place. Tired & can’t see well (durrrhhh).

Amanda

[Gabe]

#1180865

Hi Amanda. You still have Graves’ even without your thyroid. That’s the misconception with this disease. A TT is a form of “treatment” not cure. There are tests to checks for the Graves’ antibodies (TSI and TRab). These blood tests will tell you the status of your disease antibodies. As long as the antibodies are swirling thru your system they can attack your eyes or shins (myxedema).

My TED started with intermittent blurriest, watering eyes, double vision, and then progressed from there. You’re lucky to have a team focused on your eyes. Hopefully you’re also seeing a ophthalmologist. If they tell you that you need prisms, get the stick on (Fresnal). The disease is sometimes progressive so you might need adjustment. Getting prisms ground into your glasses is expensive and if it changes your stuck with glasses you can’t use.

I hope this turns out well for you. I know how frustrating and scary it is…

Best wishes,

Karen

[npatterson]

#1180866

Hi Amanda,

in a brief word, yes, TED can waiver in and out like yours is doing. I agree that it is great that you have a team of people looking at (and after) you. Think of all the teaching you are doing. Write down your questions before you go in, so they can be addressed. I have a different position on prisms. If there is a new prescription that says “Doctor’s change”, I have never known an optical shop (Lenscrafters, etc.) that did not honor that. You would do well to check before you begin that process.

Gabe is right. As long as those antibodies are “in there” thyroid or none, they are still active and can wreak havoc.

Take care,

Nancy

[popscene01]

#1180867

Nancy & Karen thank you! At least I’m not going crazy. Which every new or progressive thing with this makes me feel like I could be.

I’ll make sure I ask & know those things are being checked when I get my blood work done next Monday & be prepared with my questions when I see my doctors later that week.

Unfortunately, last year at the end of October was our open enrollment & I dropped my separate eye coverage. I do have minimal coverage, like 1 appointment per year, with an ophthalmologist & terrible discount plan under my main insurance. The only thing the eye coverage was good for anyway were the glasses. Who knew 2 months later I would be diagnosed with Graves’!?

So frustrated!

Amanda

[Raspberry]

#1180868

Hi Amanda, sorry you’ve got TED troubles going on….I have mild TED that worries me but so far seems steady. I don’t have eye insurance either but ophthalmologists treating you for TED counts as “medical” and not eye in my plan at least though I have no coverage for optometrists, glasses, or glasses prescriptions. I’d encourage you to take a second look at your insurance – if you are covered for any other medical specialists you should be covered for an ophthalmologist too for non-glasses/contacts stuff.

[popscene01]

#1180869

Luckily, my specialist works with the local university & the place I have been going to is a learning/teaching facility so they told me they are not even billing my insurance! (Because I kept asking if they were putting the claims through as medical instead of just optical because of the condition.)

I could REALLY use a new pair of glasses, though I think I need more answers & to get this more under control before I do.

Amanda

[Author]

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