[RBF]

#1059109

I am a 52 year old woman who was diagnisosed with graves. I ended up having the RAI. After the radiation I developed excessive tearing, left eye protrusion and symptoms that mimic severe cold/flu like systems. My diagnosis is now graves ophthalmopathy. Does anyone out there who has this disease suffer from fatigue, heavy legs and excessive mucus? My doctors are baffled?.

[Kimberly]

#1172230

Hello and welcome to our forum!

Fatigue and muscle weakness can certainly occur when thyroid hormone levels are out of balance. Getting a set of labs done (TSH, Free T4 and T3) would be a good place to start.

However, I’m not familiar with the flu-like symptoms being associated with Graves’. Have you had a physical recently? It might help to get in to your General Practitioner to see if something else might be going on.

Please check back and let us know how you are doing!

[gatorgirly]

#1172231

Were you given any steroids for the Graves ophthalmopathy (known commonly referred to as thyroid eye disease or TED for short)? Steroids can lower your immune response. I worked in health care for several year and when I took prednisone for TED, I ended up getting the flu. My endocrinologist hasn’t allowed me to get a flu shot since my Graves diagnosis in early 2010. That, combined with working in a germ-infested hospital while on a heavy dose of prednisone, led to me getting the flu which knocked me off my feet for almost two weeks.

[snelsen]

#1172232

Hi, I had quite a few steroids when I had active TED and optic neuropathy.
60 mgm Qday for a month with a long taper, and Solu Medro IV.
While it is true that you can be a degree of immunosuppressed while on steroids, when they are discontinued, your WBC (white blood count) returns to normal baseline.
So, in my experience, the steroids helped a small amount (slightly less double vision, slightly improved vision with visual fields testing) the improvements are temporary. So when they were discontinued, the improvements disappeared.

I realize that there are probably many varied opinions about flu shots, among the public, and to a lesser extent, among doctors.
However, I chose to receive the flu shot when I was on the steroid taper. My WBC was not alarmingly low, and was almost back to baseline at that time.

I know you and I both work in health care, gatorgirly. I see no reason for you not to have the flu shot in the future. Do you plan to have it this year?

RBF, I did not have fatigue and heavy legs with TED. I think I did have some increased mucous in the active phase. Aside from the TED, I suggest you get the labs Kimberly suggested. Maybe you are a little hyPO right now?
Shirley

[gatorgirly]

#1172233

I didn’t mean to suggest immunosuppression after steroids, just while on them. That was my experience.

I no longer work in health care so the flu shot is less of an issue for me. However, my endocrinologist was not comfortable with the research regarding flu shots for those with untreated (maybe he used a different word?) Graves disease. Flu shots were mandatory at my hospital by a certain date, probably December or January, and two years in a row that happened while I was on PTU and thus considered untreated/uncured/uncontrolled/whatever word he used. He said about 50% of physicians recommend the flu shot for those with Graves and the other 50% advise against it. He was in the latter category and I was fine with it since in those three years, I only got the flu once and it was about a week after RAI so it could’ve been a number of things.

I have no plans to receive the flu shot now or in the future, unless I work somewhere it is required or if my health is compromised without it. I haven’t met my new endocrinologist yet (I moved from FL to MA and see him Monday for the first time), but I will ask him about the flu shot then.

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