[Robboford]

#1059421

Hi All,
Picked up my CT scan results yesterday which noted the following findings: “There is bilateral exophthalmus in keeping with Grave’s opthalmopathy. Increased intraconal/intraorbital fat densities are noted. No intraocular or intraorbital abnormalities are otherwise detected. The extrinsic ocular muscles are symmetrical and normal. Conclusion: Bilateral exophthalmus in keeping with Grave’s disease orbitopathy.” I go back to see the opthalmologist on Monday so will update next week. Although at my first visit he had mentioned radiotherapy treatment he mentioned this in conjunction with saying “You have a medically induced disfigurement (referring to my bulging eyes and stare).” I got the impression the only reason he was suggesting the radiation treatment was cosmetically based. As I have only had TED in conjunction with Graves for just over 13 months, is it too early to be having this treatment and would it be of more benefit later on if my symptoms worsen or can I have (or should I have) radiation more than once over the journey through TED? I am fortunate in that to date the only effects I have been suffering are watery eyes and occasionally increased bulging and general soreness. I know I should also wait for the opthalmologist’s advice and will see my Endo in another 4 weeks and ask for his input, but any thoughts or comments my fellow warrior’s can contribute would be greatly appreciated.
Stay well all and battle on.
Cheers, hugs and kisses
Debbie

[Ski]

#1174594

The radiation treatment for TED is only effective in the early phases of TED, so no, this wouldn’t be something to save for later. TED has a well-defined disease curve, though the length of the overall process can vary. There is an initial phase when the symptoms and bulging can change frequently, followed by a period of relative stability, followed by a period of gradual improvement, and finally complete stability. The early part of the curve is very steep, the end part is shallower. Directed radiation to the eye is typically only effective in that first phase, and it works mostly to minimize bulging. Oral steroids can be another option to attain the same result during that period. Oral steroids and directed radiation carry some risks, so sometimes doctors will use a little of each to minimize the risk of both. Last I heard, patients who respond well to one of these two will likely also respond well to the other, but if the symptoms do NOT respond to one of these, they are not likely to respond to the other either.

It’s difficult to say how a patient’s TED will progress, so there’s some art to this, but there is a school of thought that suggests using one or both of these treatments (steroids and/or directed radiation) can keep the outcome from being worse by keeping the changes to a minimum and waiting out the early phase.

Once a patient gets to the very end of the disease curve, what they call the “cold phase” (diagnosed in hindsight), then surgical interventions can be pursued. If the early treatments work well to keep the eyes from changing a lot, then hopefully it either eliminates the need for surgical corrections, or minimizes the procedures that will be needed to correct the changes.

I hope this helps!

Good luck to you, this can be a tough road — keep in mind that people who suffer the very worst symptoms of TED are in a very tiny minority of patients overall, so the odds are on your side. If it get really bad, though, you’ve got a great community here of people who completely understand what you’re going through, and that will help.

[Robboford]

#1174595

Hi Ski,
Thanks for your informative reply. Greatly appreciated. I will update again after my next Opthalmologist appointment.
Cheers
Debbie

[Robboford]

#1174596

Hi All,
Saw my Opthalmologist yesterday who reviewed my scan results. I didn’t realise the “bulging” was as severe as shown on the CT Scans, left eye protrudes approx 27mm and right not far behind at 23mm. Took more measurements and requested labs so that we can establish the rate the TED is progressing. I go back to him first week of February and he will arrange the Radiation treatments from then. After discussing Radiation or oral Steroids both he and I agreed on the Radiation. He was quite surprised by my Trab result a massive 25, although I am not sure of the normal range. I will check with my Endo at the end of this month as I have been monitoring my TSH, FT3 and FT4 more than Trab and Tpo levels, although my Endo has been testing all these. Till next time …… Stay well
Cheers, hugs and kisses
Debbie

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