Posted 25 September 2013 - 05:26 PM
It´s been a while since I wrote the first time Hope you all are doing well. I have been on vacations last 3 weeks and I used many time to read about Grave's. I will be back to work on Monday (oh nooo ).
I have a few questions related to TED phases that I would like to ask.
Most of my readings stated that TED has 2 main phases. Active phase (with inflammation) and stable phase (with no inflammation but some remaining stable symptoms such as lid retraction, bulling eyes, etc). As per there sites, active phase can last from 6 months to 2 years depending on each case.
My first TED symptom was in April 2009, and definitely that year along with 2010 were two bad ones for my eyes. Now I have dryness and right upper lid retraction, but I don´t feel much inflammation apart from little puffiness under both eyes. My questions are:
1. Since I did RAI twice and that worsens the autoimmune problem itself, would my TED follow standard disease phases? Will I remain on active phase forever?
2. Is there any blood test that I can do to know in which phase I am? Are those the same as for autoimmune disease? TRAsb?
Last time I went to an ophthalmologist it was July 2012. She asked me for TPOAb (positive in 51.3 UI/ml) and TgAb (negative in 16.02 UI/ml). She didn´t ask for TSI nor TBA, which I understand are very related with TED.
She wanted me to treat me with botox injection on my right Muller muscle and finally I decided not to do it because she could not provide even a % of successful cases vs total and I was scared with getting a too much droopy right eye. I am happy with that decision I took, I am still on time to do a treatment when I have all of the information
Thanks all in advance, I would really appreciate any information and/or on line resources about that.
Posted 30 September 2013 - 10:15 AM
I´ll go ahead and ask Elaine, I think no one knows about this. I´ll let you know what I find out
Posted 30 September 2013 - 01:57 PM
Elaine just updated her TED book so she should be right up on the latest info. Do let us know.
Yvonne, who believes TED is by far the hardest part of Graves'...
Posted 07 October 2013 - 05:42 AM
Here is Elaine response to my questions. I am still unclear about how RAI affects TED phases process, but I guess since it is an autoimmune trigger it affect at least as smoking:
The active phase of TED can last for up to 5 years and it's aggravated by stress, cigarette smoke, allergic reactions, etc. Anything that stimulates the immune system can increase production of TSH receptor antibodies, and these are the antibodies that contribute to TED.
During the inactive phase of TED symptoms often resolve. That's reason in itself for holding off on Botox although you may decide to have it at a later time.
Tests for TSH receptor antibodies can show that the potential for TED is there but they can't diagnose the condition. Imaging tests are more reliable. Best, Elaine