[Anonymous August 27, 1997 at 5:38 pm Post count: 93172]

#1157632

Pretibial myxedema, in my personal experience, is a specific type of rash — usually on the legs or shins. It doesn’t itch as much as one might think and eventually goes away without treatment. It is a sign associated with Graves’. Someone wrote in recently describing it in a post, but may not have known what it was.

[Anonymous August 27, 1997 at 5:49 pm Post count: 93172]

#1157633

Hi, MidlandD:

I have the pretibial myxedema, too. It occurs in a small percentage of Graves patients, most of whom, I’ve read, also have some clinically observable Graves eye disease. A part of the skin called fibroblasts start secreting a substance called “mucin” under the skin, causing it to harden. For some unknown reason, it is limited to the portion of the body from the ankles to the knees, or sometimes the tops of the feet. The treatment involves using steroid ointments on the skin (sometimes covering them with a wrap, sometimes not), or receiving steriod injections directly into the lesions/bumps themselves. It sometimes clears up on its own, but left untreated it also sometimes becomes quite disfiguring. It does not cause pain unless some of the hardened deposits begin to press on a nerve. Mostly, it’s just ugly. I really don’t know how effective the treatment is for it — in terms of getting rid of it completely, but I’ve seen some improvement in mine since I began rubbing steroid ointments on twice a day.

Email me, if you have any other questions.

Bobbi — Bobbi1436@AOL.com

[Anonymous August 27, 1997 at 5:59 pm Post count: 93172]

#1157634

Thanks for the information!

[Anonymous August 27, 1997 at 8:03 pm Post count: 93172]

#1157635

Is it possible for a person to have this condition before they are diagnosed with graves disease?
My sister is forever breaking out on her legs with a rash and is treated with topical steroids.
So far her thyroid is normal. Can this be a pre-existing condition? Ay input is appreciated.

Dee

[Anonymous August 27, 1997 at 9:29 pm Post count: 93172]

#1054012

I’m new to the bulletin board and hope someone out there can help me. I’ve had Graves disease for several years, have had orbital decompression surgery, and waiting for surgery #2. Now, I have a new problem! I’ve got places on both my legs that the dermatologist says are pretibial myxedema. Does anyone have this? What’s the treatment? What’s the progression – or does it go away? Any info. will be GREATLY appreciated!

[Anonymous August 28, 1997 at 2:18 am Post count: 93172]

#1157636

I read about this condition during my general research on Graves’.
Unfortunately, the stuff I read said there wasn’t much in the way of
treatment. Said the stuff couldn’t be removed by surgery because then
it grows back and also causes very ugly scarring that often looks worse
than what the person originally had. The other thing I read was that
some doctors call it by another name because it can appear on other
parts of the body besides the legs.

The best news I was able to find was that not many people get it and
that it always appears in tandem with obvious Graves’ eye disease. So,
supposedly, if you don’t show symptoms of the eye disease, you
shouldn’t have to worry about getting the skin condition.

Maybe someone else has found more recent news about treatments that
may be more encouraging than what I saw.

[Anonymous August 28, 1997 at 10:06 pm Post count: 93172]

#1157637

My Endo said I have pre-tibial myxedema and mine does not sound
anything like what I have read on the BB…
My feet and legs are swelling so badly that I look
like elephant woman from the knees down!!!! I just
started getting a rash, very very itchy on the side of my knees….
I scratched so much I broke the skin!! I am on water pills to
bring down the swelling and that does work to a certain extent.
I have a mild problem with the eyes so that doesn’t make sense
with what I read either…. have I got something different???
I still swell but not as bad.
By the way I had RAI in November ’96, and am on 1mg Synthroid a day.
Think I am going Hypo again…… Tired all the time and no energy.
Some days I can’t even get out of my own way!!! Comments?????
Lynn

[Anonymous August 29, 1997 at 5:08 am Post count: 93172]

#1157638

Hi, Lynne:

From the print-out that my dermatologist gave me, what you have is “it”, too, Lynne. The “main” form of it appears to be the hard, bumpy, somewhat discolored skin. But it “can also present as a diffuse non-pitting edema on the shins or feet evolving into elephantiasis.” More rarely, still, it can affect other parts of the body, as well — face, shoulders, upper limbs and lower abdomen. I wish I hadn’t read that part.

Take care,

Bobbi

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