[snelsen]

#1018523

I am interested in the relationship of TSI ( thyroid stimulating immunoglobins) TPI, (thyroid peroxidase antibodies.)
ARe they an indicator that TED is still in the active phase?
Of course I have asked my eye docs, get no real response except not sure/
The reason it is becoming a concern to me, is that I have strabismus surgery scheduled with the peds opth doc on 6/23.
The same person has been doing the measurements for over 1.5 years, and this doc feels I am not in the cold phase b/c I have been stable since October. My initial thought was to wait longer, so I asked for more measurements before the surgery.
Adding to the mix, the neuro-opth, and the surgeon wo did the OD think I am in the active phase still, the surgeon said i ha chemosis in my right (non OD eye) which was new.
My TSI has gone up even more. Last JUne was 225, last week is 297. range 125 or less, so mine is higher than a year ago.
TPI is 44, range below 35. The thyroglobin antibodies are in range, below 20, no specfic # provided.
My plan is to have measurements in a couple weeks by the surgeon doing the surgery/ He made the decision to proceed by the measurements taken by his assistant all the other times. I plan to ask/tell him about the chemosis in the right eye, tell him about the labs (gave them to him when he said I was ready for surgery>) again.
Summary-I am inclined to wait, for I don’t want the surgery if I am in the active phase for obvious reason. At the same time, I was happy to know he thought I was in the cold phase. But the other two docs don’t think so, and the chemosis is new in the past month.
Thanks for slugging through this!

[Bobbi]

#1065437

I have heard conflicting information, Shirley, about whether testing for the antibodies makes a whit of difference in predicting the course of the disease. Some patients will swear by it. As an amateur here, it stands to (my) reason that if the antibody levels are high, then the disease must be active. But a conversation with my endo long ago suggested otherwise. So the lack of documented knowledge about any correlation may be why your questions to your eye doctors have come back with vague shoulder shrugs.

[snelsen]

#1065438

Yes, that is what I have concluded. I probably will defer the strabismus surgery, opting for a longer period of time to be sure I am in the fibrotic stage. Hard to do, though. I want to MOVE FORWARD! Thank you for your reply.
Shirley

[Bobbi]

#1065439

One thing to keep in mind — if you were on prednisone, or other steroids at the time blood tests were given, that would impact the antibody levels…… You may have taken that into consideration already, but I thought I’d mention it in case you hadn’t factored that aspect into you thoughts. For example, if you had a certain antibody level ON steroids, and your levels now, OFF steroids (hypothetically) were a touch higher, then in point of fact your antibodies would have subsided between then and now. Just a thought.

[snelsen]

#1065440

Good thought! I did not think of it at all. In this case, I am well over six months from steroid from either lab.
Think I iwill check the older logs, see if chemosis is mentioned. Has it come up in any conference?

[Kimberly]

#1065441

Hello – We got a great book on Graves’ Eye Disease at last year’s conference. Unfortunately, I don’t have the book with me at the moment, but I will check to see what it says about chemosis as soon as I can.

[snelsen]

#1065442

Thank you, Kimberly.
The eye doc (who did the decompression in Feb) said it meant that I may still be in the inflammatory stage.
The peds eye doc (whom I saw couple weeks ago) said that I was ready for strabismus surgery. I want to err on the side of prudence and conservatism, and NOT have the strabismus surgery if I am still in the active phase, so that is why I was wondering if chemosis (which I think is an inflammation between the cornea and eye) means that there is still activity. But I don’t know if it is symptom of TED, or could stand alone, and have nothing to do with TED.
I can always cancel the surgery, scheduled for 6/23. On the other hand, I am looking forward to the surgery whenever I am really in the cold phase. My diplopia is really impacting my life, plus extreme photophobia, and sun glare that makes a "blind spot." I would love to think that strabismus surgery WILL help. AND extreme tearing most of the day.
Kinda discouraged today.
Shirley

[LaurelM]

#1065443

Hi Shirley,

Another cause of the chemosis could be allergies. We are in the same region and I have been having some chemosis (not really bad but annoying) with my allergies this season. Surprisingly, sometimes it is my only noticeable symptom.

Best wishes,

Laurel

[snelsen]

#1065444

Hi Laurel, that is a really good thought! This is the first year that I have noticed any allergies, scratchy eyes, runny nose, sneezing….etc. For the first time in my life, I have taken Claritin, it does seem to help. Thank you for your response.
Sometimes easy to always think of TED first, especially when it IS my eye!
Shirley

[Kimberly]

#1065445

Hi Shirley – Sorry for the tardy reply, but I have been travelling and just got home last night.

The book that I mentioned only discusses chemosis in passing as one of the many signs associated with Thyroid Eye Disease. So yes, it could potentially be an indicator that the active stage is still ongoing, but this is an assessment that would definitely require a doctor’s involvement. Perhaps you could get an additional doctor’s opinion, as you seem to be getting conflicing advice on whether to proceed with the strabismus surgery now.

Also, FYI, as I was researching chemosis, I ran across a study that said that TRab testing (this measures antibodies against the TSH receptor) was useful in about 50% of patients in determining the course and severity of Thyroid Eye Disease.

Sorry for the ambiguity…unfortunately, as we’ve all learned, there aren’t many black and white answers when it comes to Graves’!

[snelsen]

#1065446

Thanks, Kimberly! I do appreciate the research you have done, and do realize that there is not much evidenced based research on this one way or the other.

In back fence talk with my neighbor, she said, "It is also a product of allergies, and people in Seattle who have never had problems with allergies in their life, have had allergy symptoms this year. Has anyone mentioned that?"
Well, hmmmm. I am one of those people, and my nose is runny, then stuffy, my eyes a bit itchier, etc etc."

So I called the doc who declared that the mild chemosis in my right eye probably meant that I was in the active phase,thus telling my I should not have the strabismus surgery FOR SURE, and asked this question.
His return call, "Oh hi, Shirley, sure, chemosis is really common this year in Seattle in people who have never had allergies."
He seemed disinterested and cavalier about the whole thing, and I am beginning to suspect that he is not a happy boy because I did not choose him to do the strabismus surgery. Too bad I have to use MY emotional energy to be bothered by this kind of mickey mouse. BUt that is the way it is sometimes.
Well, I vented, I feel better now, will feel really better when I pull some weeds and thin my carrots!

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