[hoochie]

#1018451

Hello Everyone:
I feel so blessed to have found this site and to be able to communicate with others that are going through this disease.
I started having thyroid problems in early 2000, heat intolerance, racing heart. This went on for a few years, then my
TSH was checked and found it was off the charts. By 2006 I had a large goiter (nodule) in my neck. Finally in 2007 I needle
biopsies and found it was a cold nodule, non diagnostic. My Endo recommended a total thyroidtecomy. Now I am not so sure that was the answer, but it is what it is. I had thyroid surgery in 2007 and have been on synthroid every since. My TED problems started this past January. I had started noticing some changes in my vision, but nothing I couldn’t live with. After my doctor ran labs, then found out my TSH was again off the charts. A few weeks later I started experinceing double vision. Went to Opthamologist and had all the field test, etc. He said I had Graves. I later had CT, MRI, and PET scans which showed extreme inflamation in my right eye. I am now on my second round of steroids, having 3 weeks left on this round, then back
to the endo. I am also taking supplements of flaxseed oil and Green Tea extract. Have heard these help. The swelling has gone done, but the eye muscle is still affected. I can look side to side, down but it doesn’t move up much. I have prism glasses
which help for the most part, but is difficult to drive. I use translucent tape over the one eye with sunglasses which helps.
I am retired, but this diseases does take its toll on you mentally and also feels funny when people look at you and wonder what is wrong with your eyes I will be talking to my opthamologist when I see him in October regarding surgery. From what I have read on this site, they will not do any surgery until I am in the stable phase. My last TSI report showed my TSI was at
139, which the endo said was high, but not as bad as some he has seen.
Thanks again for this site. It is a good feeling to know you are not alone and others are there to help.

[Kimberly]

#1064957

Hello – Welcome to the boards! Sorry to hear that you are having issues with TED…you are correct that doctors prefer to wait until you have reached the “stable” phase of the disease before doing surgery. (The one exception is that emergency decompression surgery may be done if your vision is threatened due to compression on the optic nerve).

In the meantime, I know it’s a frustrating process. However, there are many members here who have been (or are going through) the various stages of TED. Feel free to ask questions here…or just vent if you need to!

Also, I don’t know where you are located, but the GDF’s annual conference is in San Diego this year, and there are always very informative presentations on TED, as well as plenty of opportunity to connect in person with other patients who have "been there, done that".

[hoochie]

#1064958

Thanks Kimberly for the reply and support. I do have good days and bad days. I try to stay positive as much as possible.
I am finding out that this disease affects everyone differently and not at the same process. I do feel it might be stablizing,
the eyes are not as stiff. It should be easier though getting answers from all the doctors I had to go to. No one seemed to
know where to go next. Was a very frustrating route to just get where I am today.
I am located in Florida, would like to go to the conference, but don’t think I can this year.
Thanks so much
John

[Bobbi]

#1064959

Hi, John:

The problem is that the doctors know the general progression of the disease, but not necessarily how badly it will affect each patient. Getting "some" symptoms doesn’t mean you will end up with horrid problems. Nor is there any true indication of how long things will last. I did a whole lot of fretting while I was enduring the eye disease.

If you are experiencing difficulties, there is a decent eye institute in Miami — Bascom Palmer. The doctors there specialize in the more extreme diseases of the eyes. One of the people who started this board, Jake, used to drive hours to get to Bascom Palmer for his surgeries and checkups.

[snelsen]

#1064960

Hi, I am also retired, have been dealing with TED approaching 1.5 years. It is a very difficult disease to have.
From my knowledge, although the TSI is an indication that we have TED, it is not one of the variables that is used to determine when we are finally in the cold phase. That decision is made by measurements by eye docs over time, usually a neuro opth doc to be sure your optic nerves are ok, and measuring your visual fields, etc. and another opth, in my case, I was referred to one who ultimately would do strabismus surgery, and I had careful measurements there, prisms did not help me with my double vision. To have those measurements stable, both by what we notice, and by their objective findings, that is when we are "ready" for eye muscle (surgery) to help correct the double vision. In my case (and oh my we all are sure different as we march down this miserable road of TED) my TSI (done at my request cause the docs don’t rely on it at all in making progressive decisions about treatments) is much higher a year and one half later (400) but I seem to be stable, my vision is the same old double when I look up and ahead, eyes water constantly, have to blot my eyes all the time, I use tons of eye drops, and there are no sunglasses which are dark enough for me. SO NOT FUN.
But i wll be having eye muscle surgery pretty soon, probably eyelid surgery after that, and I will continue to post what is going on with me.

[gotgraves]

#1064961

Hi,
Someone mentioned an annual conference, .what are the dates?
Ruth

[Kimberly]

#1064962

Hi Ruth – Welcome to the boards! The dates for the conference are Oct. 22-24th. (However, you will want to arrive on the 21st, as things will start bright and early on the 22nd).

You can get additional detail by checking out the post in the "announcements" section of this board (just above the regular postings) or you can click on the butterfly Graves’ Disease Foundation logo to get to the home page, which also has lots of info.

The conference is a great opportunity to learn about Graves’ — and to make personal connections with others who *get* what you are going through! There are also separate breakout sessions for family members, since they sometimes need to vent as well. ” title=”Very Happy” />

Hope that you are able to attend!

[Author]

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