[brawson]

#1059383

I am having a hard time dealing with my TED. I am a school district administrator and my appearance is frightening to students. My job requires that I go into various classes throughout the district and I can see how my appearance affects the class when I walk in. I present professional development seminars as well and so I am very visible. I wish I could hide but I can’t. This is devastating to me. I have waited for this disease to get out of the active phase for nearly 2 years. I thought things were going well and my TSI had gone from 560 to 320 but the last time I tested in August, it was back at 520. Does anyone know of research or information about how to reduce the antibodies and lower the TSI. I have already had IV steroids and they had no effect. (Well, they did have an effect of weight gain). I had RAI 3 1/2 years ago for Graves, I wonder if removal of my thyroid would affect the TSI which whenever someone hears the number, they note how high it is. My neuro says it is the highest he has seen.

Additionally, I have an HMO. I have been seeing a neuro-opthamologist for the TED. I called the HMO to see if they had a facility or team that dealt with the whole patient, the emotional and physical. I noted that I feel like I have all these docs and each takes care of their part but none talk to one another. I have an endo who orders blood tests and if it indicates that I need adjustment, orders the adjustment. I see my neuro every 3 months and each time he lets me know that I am still active and he will see me next time (I leave crestfallen that I have to keep living like this for another season). I keep seeing great things from Kellogg Eye Center about a team working in concert and I wish there was something out here in CA Bay Area. I asked my HMO if there was such a team in their system and they took my question as a complaint and then went on to tell me that I do have a team, the doctors who treat me and that they are taking a conservative approach to wait for the active phase to subside. I am considering going outside of my HMO because I know at some point I will need the Orbital decompression surgery and I want the very best . Has anyone gone to the Shiley Eye Center in San Diego?. Their information talks about a team of doctors working in concert. I went to the very informative meeting in San Francisco in August and will be going to the San Diego event and I suppose I will find some answers there. One of the doctors at the San Francisco event said that Graves is the only disease where we wait until the damage is done and then go about to fix the ravages of the disease. It does seem backward.

I am just so tired of this. I have never been a patient person and this has cramped my style and changed my life in so many ways. Sorry for the rant but I needed to let it go.
Hope to see some of you in San Diego

Barb

[Kimberly]

#1174403

Hi Barb – I wish I had some better words of wisdom during this “watch and wait” phase. Every patient and every situation is different, but I do know of cases where TED patients have chosen to educate the people around them about what is going on, and that can potentially help diffuse an uncomfortable situation.

There are two doctors from Shiley Eye Center who will be speaking at the conference, and I know of at least one attendee who was treated at Shiley. (I’m sure there will be even more, since the conference is in San Diego). There will be lots of opportunities to mingle with presenters and fellow attendees, so hopefully, that will help you decide if you want to go out of network to visit this center.

[Ski]

#1174404

Hi Barb,

It sounds like you’re doing your very best to handle a difficult situation, I’m sorry it’s stretched on so long! I’m glad you’re reaching out, it can help in many ways.

I can offer at least one hint for your day-to-day — consider tinted glasses for use while you’re in front of people. Find a tint as dark as possible for indoor lighting. That can help to hide the fact that your eyes are different, so reduces some of the anxiety.

The wait for treatment with TED does feel so wrong, I know, but the truth is that surgical interventions taken during the hot phase can actually make things *worse* so that you would find yourself with more swelling and no further options for correction. That’s an enormous risk, and it would mean perpetual problems. At this point, I know you’ve been waiting a very long time, but once you are confirmed to be in the cold phase, you can be confident that surgeries will accomplish what they set out to accomplish, and that’s important.

If you’re in the SF Bay Area, I’m pretty sure I know what your HMO is — I am covered by the same HMO, and I actually feel like I DO have a “team” of professionals, because our information is available to all of them at once. I think what you’re looking for is a more holistic approach, which I think they’re developing, but it’s immature.

I do think you’d be wise to at least check in with Shiley, everyone I’ve spoken with from that facility, during the 8 years or so I’ve been attending conferences, has been truly immersed in this topic, they know a lot, they’re fascinated and interested in finding the right answers for each patient, and they’re extremely empathetic. They’ve done research on the emotional aspects of TED, and found that the emotional hit can be worse than having a cancer diagnosis, gauged subjectively by the patients themselves, so they truly understand and care about what the patient is going through.

We’ve also met people from Kellogg, and they are equally excellent — much further to travel for you, so that’s a consideration, of course. You may want to visit both, if you have the means, because the end result is SO important, you should feel that you researched and chose the very best.

It’s POSSIBLE that you may be able to take advantage of some level of coverage, even in the event you go elsewhere, so you may want to start asking those questions now.

I wouldn’t give up on your healthcare group, though — waiting is actually the best route to be taking, and the frustration that comes with it is no fun, but it doesn’t mean you’re not being treated correctly.

Hang in there!

[brawson]

#1174405

Thanks for the thoughtful response. I will look into the tinted glasses. I know that I do not want to have surgery until I am sure to be in the cold phase. What I wonder is if there is some way to quell that immune response and speed the process up.

I have been happy with my HMO for years and I would not continue with them if I didn’t think the treatment was appropriate. My worry is down the line with the surgery. I have had to be my own advocate but I accept that it is my responsibility to get as much info as I can. I had to insist that I be referred to the neuro opthamologist and recently when I had a torn retina, a retina specialist. When the time for surgery gets closer, I will definitely explore all options including the Shiley Center.

Thanks again,
Barb

[Marlan]

#1174406

Hi, I read your post and I can really relate. My situation is a little different, but we have things alike. My left eye bulges and is swollen and constantly waters. I have normal thyroid function tests, but my antibodies are sky high [590]. The endocrinologist doesn’t feel that TSI is an accurate gage indicating things are better or worse. In other words just because I get a lower reading doesn’t mean I’m getting over this horrid disease. I have had this disease for 1 and 1/2 years. Right now I’m going thru an especially bad period. I had an eye surgery because my eye lid was very retracted. Steroids do not help.

I wish I had something positive to say. I did go thru a 6 week period without symptoms, and my eye started to look better and felt great, but I am back to square one now.

I see a regular eye md and a specialist in my problem. There are only 2 of these mds in Oregon. The specialist is the one who has put me on steroids and also did the eye lid surgery.

I’m thinking of trying a drastic diet measure to see if there is any improvement. I guess I feel that it’s better to keep trying new things to keep hope up. Because without hope there is really nothing.

Stay strong. Marlan

[shasha]

#1174407

I was diagnosed with TED in July and actually just joined this forum today. I wanted to say thanks for the tinted glasses suggestion. I feel silly for not thinking of that myself, although I’m struggling with rationality a lot of them time lately it seems. I also work in an academic setting (college) and find that my appearance (grossly swollen upper and lower lids) detracts from the message I’m trying to deliver oft times.

I can only imagine the frustration that the previous poster must feel after several years of waiting for treatment. I have read everything I can get my hands on about TED (the first month sifting through mis-information) and also find very little encouragement regarding treatment during the active phase. I currently have no health insurance (my husband has always insured us and he lost his job a year ago). I am seeing an endocrinologist and my regular O.D. – who has been so kind and consulted a neuro-ophthalmology specialist on my behalf, who is a personal friend of his, so that I can avoid that expense until it becomes critical. The endo diagnosed me with Graves hyper and TED. My eyes were my chief complaint. I started MMI 10 mg – immediately but was unable to tolerate that dose due to joint pain, muscle cramps and headaches, so I’m down to 5mg and that seems to be working although I’m not scheduled for bloodwork for another month – so I don’t know if it’s effective. The eyes just continue to get worse. Double vision and protrusion in the left eye – right eye seems to be following suit at a slower pace.

I’m very grateful to have found this forum and other people who are experiencing these issues. I hope to find support and offer support in any way that I can.

Thanks!

[Author]

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