[Anonymous May 18, 2007 at 1:29 am Post count: 93172]

#1020171

Dear Bobbie, Ski, and fellow TED patients,
Thank you so much for your previous responses to my last message posted on 04/14/2007. I was seen by my eye MD a few days ago and was shocked to learn that he felt I was starting to develop neuropathy of the left optic nerve. My eye symptoms had increased so much in severity in the past month that I knew I needed to be seen sooner than my next scheduled appointment in mid June. He insisted that I start a 3 day course of IV Steroids — SoluMedrol — a huge dose of 1000 mg. I was very hesitant to do this as I’ve never been on steroids in my 66 years of life, but I certainly didn’t want to lose my eye sight in my left eye. I have one more day this week of treatment and then another 3 days next week. At that point he’ll decide on the next step. So far, my eye symptoms have improved. My last TSH level done about a month ago was only .04 ( it had been at .71) and my T4 level was 1.9. Could there be direct connection between these levels and my
worsening eye symptoms? I’m very concerned re the long term adverse effects of steroids and have been advised to get a second opinion. Would you have any thoughts on this? I’ve been wanting to start a support group in Milwaukee, but just haven’t felt well enough to do so.
I’m trying my best to keep going, be positive, try to be a good wife, etc., but it’s very difficult at times. Also, I care often for my 6 year old grandson and 4 year old granddaughter and they obviously notice my eyes. Are there any articles written for children or grandchildren which would explain the condition or are there any articles you might suggest that would help my explain my appearane to them? Thanks so much, Nina

[Anonymous May 18, 2007 at 3:44 pm Post count: 93172]

#1076226

Hi Nina,

I don’t think we have a bulletin on TED specially targeted to young people, but that is a GREAT idea!

Offhand, I can’t think of the perfect thing to say. They’re pretty small, your grandchildren, so it may suffice to say that your eyes “look different” because of something that’s “wrong” behind your eyes, and expand on that as necessary (for instance, I’m tired because my doctor gave me something for my “eye thing”). At least they’ll have some basic info. If they ask more questions, keep it simple, and admit it if they ask a question you don’t know the answer to.

I have heard of IV steroids being used to reduce the swelling of TED. It’s true that steroids carry their own side effects, and you should be well versed in what those are (along with anything you can do to minimize them), but if you’re faced with losing your eyesight without them, it’s a real balancing act. A second opinion is always a good idea, if only to reassure you that everyone agrees. There are some other things you may be able to explore in terms of treatment, and multiple professionals on the case is never a bad idea.

We have been told that thyroid hormone levels are NOT related to TED symptoms. I’m not sure whether IV steroids could affect your absorption of thyroid hormone, but you could ask the doctor about that.

Stress can cause the antibodies to switch into “high gear,” so you may want to look at things you can do to lower your stress level. I realize that it’s hard, just now, to relax. Your body (and spirit) will thank you, if you can find a way.

I hope your symptoms subside soon. Keep in touch, let us know how things are going!

~Ski
NGDF Assistant Online Facilitator

[Anonymous May 20, 2007 at 12:45 pm Post count: 93172]

#1076227

Just a small comment to add to Ski’s about whether or not your thyroid hormone levels are related to the eye issues. The issue is complicated by the fact that both sets of issues (eyes and thyroid hormone levels) can be affected by antibody levels. Thyroid hormone levels do not CAUSE the eye symptoms to worsen (or improve). But, insofar as thyroid hormone levels might reflect antibody activity, you might see changes in your thyroid hormone levels along with worsening (or improvement) in your eyes.

Bobbi — NGDF Online Facilitator

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