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  • Anonymous
    Participant
    August 28, 1997 at 1:14 am
    Post count: 93172
    #1054009

    My dermatologist gave me a xerox of some pages in one of her resource books. It says that it is possible, though rare, to have pretibial myxedema and be euthyroid. Like the eye disease, the course of this is related to levels of Graves’ antibodies, and it is apparently independent of treatment for hyperthyroidism. It also said that it is possible, though rare, to have it due to Hashimoto’s.

    There are lots of different types of rashes. In fact, I wouldn’t even call what I have a “rash” at all, because it is hard and bumpy, in largish clumps. The only really “rash-like” thing about it is that it is slightly red in places.

    Bobbi — Bobbi1436@AOL.com

    Anonymous
    Participant
    August 28, 1997 at 12:50 pm
    Post count: 93172
    #1157623

    Dee, there are many other autoimmune diseases that can cause ras-like lesions on the legs. Seeking the opinion of a dermatologist or internist may be a good start. Have they checked her Thyroid antibodies? There is a condition known as Euthyroid Grave’s Disease. So she could exhibit dermatologic or opthalmic changes without thyroid problems.Does she have any component of eye disease?(which is almost always present with pre-tibial myxedema? Gee… i really hope she just a mild dermatitis! good luck julie

    Anonymous
    Participant
    January 4, 1998 at 12:46 pm
    Post count: 93172
    #1157624

    Does anyone have experience with pretibial myxedema? I have developed it after taking RAI for Graves Disease. My case appears to be mild so far. Web searching has turned up scary photos, scant description, and virtually no discussion of treatment or what to expect in the progression of symptoms. I also have some Graves opthalmopathy. Thanks for your input!

    Anonymous
    Participant
    January 4, 1998 at 4:19 pm
    Post count: 93172
    #1157625

    Hi, Elisa:

    I have the pretibial myxedema — it’s been controlled by using topical steroid creams. I see a dermatologist for it. (One more doctor to the mix!) Anyway, I’ve got more info on it, if you have questions. You can email me at Bobbi1436@AOL.com But put Graves in the title of your email, or I probably won’t read it. I get a whole lot of junk mail that I trash without reading.

    Bobbi

    Anonymous
    Participant
    January 4, 1998 at 8:55 pm
    Post count: 93172
    #1157626

    HI Elisa,
    I have Pretibial myxedema and suffered with very swollen feet and legs
    to the point of not being able to walk by end of day. I looked
    like Elephant Woman :)
    I finally got my Endo to pay attention to just what I was going through by
    wearing high heels to work and then seeing him in the afternoon.
    I was so swollen it looked gross!!!! (Up until this point he told me it was all in
    my head…and it had nothing to do with graves!!!!!!
    He prescribed a diruetic (sp) and I have been pretty good ever since.
    I still have a bit of swelling but not nearly as bad
    as before.
    LynnthePB from Toronto

    Anonymous
    Participant
    January 10, 1998 at 10:29 pm
    Post count: 93172
    #1157627

    I developed pretibial myxedema as my first symptom to
    Graves Disease. It came as a soft lump on the front of my left shin.
    Then another formed on the right shin. They itched so bad and
    nothing seemed to stop the itching. Then my thyriod gland enlarged and
    I had all the symptoms of hyperthyroidism. My family Dr. referred me
    to an endo. I had RAI in Dec.1996. During that time the lumps
    continued to enlarge and itch profusely! (one as big as a golf
    ball, the other twice that size).My lower legs ached at the end of a
    busy day. My thyroid levels are slowly getting lower and surprisingly
    the lumps are shrinking.One is almost completely gone and the other
    is getting smaller. I am not experiencing any itching on my legs.
    My endo said he has seen this happen before.
    Like you,Elisa, I have some Graves opthalmopathy- only in one eye.
    My lid has retracted and there is some protrusion. My eye Dr. says
    I have a mild case of this and does not recommend surgery at this
    time.The problems I have with my eye is that it tends to burn and water
    if I am exposed to wind or air like a fan blowing. Sometimes my
    eye aches.My biggest problem tho, is being self-conscience that
    one of my eyes is open wider that the other.
    I enjoy the Graves Support Group. I don’t actually know anyone
    who has this disease.
    The support group helps me know I am not going through this alone.
    My thyroid levels are not yet low enough to start on Synthroid.
    I have started to retain water, gain weight and I have less and
    less energy! Can anyone tell me what I can expect from here?
    Thanks, Kate

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