[scanders]

#1060401

This is part rant, and part looking to understand how things work. Sorry if it’s long.

I see ophthalmologist #1 for general management of TED. He involved ophthalmologist #2 for strabismus. #1 wanted me to see them both on the same day this last time, to start making a “plan”, everyone on the same page. So I did this. The endo is in the same health system. All have access to my chart.

Saw #2 first. He did the exam. Said all looks stable, and if #1 doesn’t need to do compression, we could move forward with muscle surgery. I asked if I needed to be in remission first, and mentioned that my thyroid levels aren’t stable yet. (I’m pretty sure I added that last part, but for sure brought up thyroid.) He said the thyroid disease is separate from the eye disease. We can move forward, pending what #1 says.

So then I saw #1. All he did was push on my eyes to feel the “tension”; no other exam. He read the notes from #2, or so it appeared. Said I didn’t need decompression, and I would hear next week about the next step. No mention of thyroid levels, nor did I bring it up again because I had already brought it up to #2, and his notes were there (my mistake? I made an assumption.) Thyroid is the thing, after all, that caused the thing (TED) that brought me to him.

I went home, had a few more questions, sent him an email, and casually mentioned that I was glad no decompression was necessary, and I hadn’t realized any of this could move forward while my thyroid levels weren’t euthyroid. (I’ve been doing some reading about this stuff, after all.) He wrote back that my levels were unstabilized (yes, I knew that–why didn’t you?), my eyes were still active, might still need OD, #2 couldn’t operate until stable, etc . Basically backpedaling. I think he dropped the ball, but that’s just my opinion.

So, since all of these docs have access to my record electronically, and again, thyroid levels are a pretty key part of the eye disease (isn’t it?), was it my responsibility to remind them to look at my thyroid levels as part of this planning process? What if I hadn’t brought it up? I’m sure not expecting them to manage the thyroid piece of it; just to be aware of it. But am I expecting too much? Because right now I’m concerned, and kind of mad. I’m wondering if I should be looking for new eye doctors. Or am I being overly sensitive because I’m hyper and kind of crabby about that, too? (And I’m so desperate for single vision, I was almost ready to go along with them.) I mean, neither one of them mentioned it until I brought it up, and they both are the “Graves eye doctors” the endos refer to in this system. At least, for now, I’m in a good place with the endo. But, how much “directing” should I have to do with the doctors? Because right now I think I’m paying too much if I have to do this much work. (What about the people that don’t know what they should ask, which often enough is, and has been, me?)

Thanks for letting me sound off, but I do need to know if this is just how it is. If so, how should I best proceed to avoid this type of situation again. Or, was it not even a “situation”, and I’m just being overly critical?

[snelsen]

#1182418

Not a problem for too long (which it isn’t) OR to rant! Thanks for writing.

I’ll have to defer to academia, and maybe NO DOC really knows yet, but in my experience, both with Graves’ and TED, thyroid levels are not a variable for making decisions about TED surgical procedures.

And I am assuming you mean the TSH, T3 and T4.
And I really don’t know. My thyroid levels, meaning the above labs, always indicate that I have too much hormone circulating, but when we try to reduce it, I turn into a zombie with huge GI problems. I don’t like to have a suppressed TSH< cause it is not a good idea. I am not a good example of an uncomplicated Graves' TED person. From what I think I have understood, TED is a related, but separate autoimmune process. And the two things for consideration for TED are:
-eyes changing all the time, based on tests and the patient
–eyes seeming to remain stable (not changing every day)

Docs did not consider my thyroid levels AT ALL for TED. They did not even ask about them.

And the indications for surgery, done in the right stages is important, are:
First OD if needed for eyes popping out of your head, and **decreased vision, which usually is optic neuropathy, which is pressure on the optic nerve. The pressure needs to be relieved, or permanent blindness results. And if this situation occurs, it can and should be done in the active phase.

Next-Strabismus surgery, to move the origin and insertion of the eye muscles that has caused the double vision. Easy to have the surgery, and generally, the outcomes are wonderful and immediate. No more double vision. Usually they wake you up in the OR, have you look at charts, to see if they have moved he muscles enough.

Next-eyelid surgery, to lower upper eyelids. Or, to raise lower eyelids. Raising lower eyelids is a big subject, and I would not do this again. Lowering eyelids pretty easy. Usually they are too high and too low because the eyes are protruding, not everyone has an OD for protruding eyes, it varies with the amount of exposure of the eye and the personal preference of the patient.

So, from my own experience, as described above, in response to your comment,
“So, since all of these docs have access to my record electronically, and again, thyroid levels are a pretty key part of the eye disease (isn’t it?),”

I did not think it was at all related to decisions regarding proceeding with OD, and the rest of the surgeries. I was going crazy with double vision in almost every direction. TED decisions were made solely on trying to figure out when the active phase was over and I was stable enough to have strabismus surgery.
(with the exception that I WAS losing vision, and HAD to have OD in active phase.)

So in summary, I think this is a question for you to pursue. So I tend to agree c #2. And for #1, it seems really dumb and unprofessional to push on eyes to determine anything by pushing on eyes to feel the “tension.”

Your life will change very happily when you have single vision again.
But TED will follow me forever. My eyes do tear, I need eye drops which really don’t’ seem to help, and any light bothers me, even when it is cloudy outside. I wear a lot of slip over sunglasses over my regular glasses.

[Raspberry]

#1182419

Hi Scanders, I’ve had the experiene like you all to often of finding my doctors’ feet made of clay. It’s really scary when dealing with a serious condition. I’ve compromised more or less with educating myself constantly and questioning them on things that matter. If it really angers them and compromise can’t be reached – only happened for one doc – I find another doc. I feel for you with the eye doc situation because if I ever get severe TED there’s only one expert surgeon in my area and I’ve seen him and he’s ummmm not pleasant – he pushed on my eyes too I have no idea why. I was so shocked by this at the time I didn’t even ask him. I hope not to need to see him again! Still medically he seemed to know his stuff.

In your case I’d suggest quietly investigate if there is anyone else you can see and just do a second opinion on the side. Maybe you’ll like them better, maybe you won’t. At least you’ll feel like you are making the best choice available to you.

[scanders]

#1182420

I thought that thyroid and eyes were 2 separate processes, but I didn’t really know, so I asked. I found different answers with my reading. I think I’ll just give #2 a call on Monday and revisit this. Tactfully. Interesting to see how he responds now when a colleague gives a conflicting answer. (I like #2 a little better, to be honest, and not just because I liked his answer better.) I don’t have a lot of options in-network, and don’t want to burn my bridges. If my eyes are really unstable, so be it. I wait. (Although I didn’t get the impression there was a stability problem when I left the office; only later with that email.) However, if thyroid was an issue, as #1 believes it is, then I still think he should have asked about it or looked it up, as a standard of practice if he believes it is related to the eyes, if that makes any sense. And yes, that would be TSH, FT4 and FT3. (And maybe he should have done more than just push on my eyeballs. I guess I’m still crabby–goes with the hyper for me.)
Thanks for listening.

P.S. I found that pushing on the eyes is called ocular retropulsion. Yep, there’s a name for it. And there’s enough sources that state hyperthyroidism should be stabilized before surgical treatment, that I’ll go along with that. But I still think the MD should have been aware of my status, or asked me, given the disease process he is treating.

[Kimberly]

#1182421

Hello – This should be a credible resource regarding surgery and hyper/hypothyroidism. Dr. Cooper is on the GDATF’s medical advisory board, and Dr. Ross is a frequent contributor to the GDATF’s newsletter. The downside is that it requires a subscription to read the full article!

http://www.uptodate.com/contents/nonthyroid-surgery-in-the-patient-with-thyroid-disease#H11

Although there’s never an excuse for unprofessional behavior, doctors can sometimes be rushed and specific issues can fall through the cracks. We definitely need to be our own advocates and ask questions if something doesn’t sound right!

[Author]

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