[dilemma]

#1059664

Hello,

I’m having a difficult time deciding what my next steps should be and hoping to get some input. To sum up my experience with Graves: I was diagnosed in June, 2010, and was put on Methimazole, which ended up giving me a rash. I was taken off of it and told I should decide on a more permanent solution. After initially refusing RAI, my doctor at Dartmouth Hitchcock strongly suggested that I do RAI instead of surgery. His case was convincing at the time so I decided to go that route. The RAI was January of 2011. By that spring, I had developed lid retraction in my right eye. I didn’t have much discomfort but my optometrist referred me to an opthalmologist that June. I was monitored for worsening symptoms, but when November came with no change, I was scheduled for upper eye lid surgery in December. The surgery seemed to be a success. My lid looked almost like it did pre-graves.

In February of 2012, my husband and I found out we were expecting our first child. I was thrilled but a little concerned about how this would play out with my Graves disease. I was monitored pretty closely and had my dosage of levothyroxine changed a few times. I had my daughter in October of 2012. At my 6 week post-partum follow up, we discovered that my TSH level was extremely low. My dosage was adjusted and I am scheduled for labs next week to see what the status is. In the meantime, my right eye has been extremely sensitive and the lid is retracting again. Even scarier, the whole right side of my face seems like its lower than the left side. I’m not sure if some of the discrepancy is due to inflammation around my eye and cheek bone, but it seems like that’s part of the problem. I have an appointment with a new opthalmologist in three weeks (my husband and I relocated last summer, which is why I won’t be seeing the doctor that performed the surgery).

Obviously, I am stressed out by this. I have a three month old baby to keep up with, so having to juggle being a new mom with my health issues is quite a challenge. I am not sure if it is best for me to see an othalmologist (he is also an oculoplastic surgeon) that occassionally treats patients with Graves, or if I should seek out a doctor who is thoroughly immersed in Graves disease. After doing some research, I am considering going to the Kellogg Center in Michigan. I know it’s a long ways from where I am, but after seeing a presentation on YouTube by Dr. Douglas (a doctor at the Kellogg Center), I feel like I need someone who is so knowledgable to help me through this next stage. I like that he seems to be a proponent for nonsurgical methods and that the Center approaches Graves disease so comprehensively (everything in my experience has been so segmented)

Have others traveled far for treatment? Am I being overly cautious by being skeptical of this new opthalmologist? Is it normal for TED to appear to be dormant, only to flare up again? Is it likely that my post-pregnancy hormone fluctuations triggered a recurrence? Do some people have to deal with the active phase of TED indefinitely? Will my options for treatment be limited because I have already had lid surgery.

Any advice or input is greatly appreciated.

[smtucker]

#1176614

My story is completely different than yours, but I too am seriously considering going to UofM. The segmentation of my specialists, none of whom know what the other has suggested, much less what they said during the last visit is beginning to worry me. At the moment, I am treatment-less and I can feel my eyes getting worse.

I am fairly sure that my insurance would not pay for treatment this far away. That is the biggest consideration. I am considering MGH because of this.

All the best deciding what to do.

[Kimberly]

#1176615

Hello – It’s actually not common for TED to recur once you’ve gone through a full cycle of the hot/cold phase. However, I have heard of patients in remission whose hyperthyroidism recurred after a pregnancy, so perhaps there could be a connection. It sounds like you only had the eyelid surgery the first time around, so you should still have all of your medical and surgical treatment options available to you.

I do know of patients who have traveled from out of state for eye care at Kellogg. There are quite a few hotels that are fairly close and have shuttle service to the center.

Personally, I would make an appointment with your general practitioner to check out the drooping face issue ASAP. As you said, it might just be due to the inflammation, but it’s certainly worth getting an expert opinion.

Take care — and please check back to let us know how you are doing!

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