[Anonymous]

#1163575

Caroline, what a lovely poem. I needed that this morning. I feel rotten, rotten, rotten. Didn’t sleep last night then fell asleep this morning waking at 10 and I’m supposed to take my medicine with lots of food before 9. It is pouring and I had to get dressed and that our dog out so she could do her business. I finally dragged myself up to do that and have been lying on the chesterfield feeling sorry for myself ever since. One eye is really weeping and throbbing, my mouth tastes all tinny (maybe from the radiation) and my stomach feel queezy along with a slight headache. Have to go for another rad treatment in a couple of hours. Just thought I would check how everyone was doing and as you can tell I really needed that poem. Thanks. SAS

[Anonymous]

#1056495

I’ve been doing some research on this topic, inasmuch as I’ve got it. Phooey. Anyway, here’s some of what I found.

First of all, while “myxedema” is a term used to refer to sever HYPOthyroidism, that (hypothyroidism) has nothing to do with pretibial myxedema, which causes some confusion. Pretibial myxedema is a hardening of the skin on the shins,typically. It occurs in only about 1% of Graves patients. In a study done by some doctors at the Mayo Clinic, where cases for 150 Graves patients, over a twenty year period, were reviewed, “only one patient in this group did not have ophthalmopathy, wherease 88% had significant proptosis and 30% required orbital decompression surgery. Dermopathy was a late manifestation of Graves disease, and its onset usually followed the diagnosis of hyperthyroidism and ophthalmopathy.” Also, “Topically applied corticosteroid therapy was used in 76 patients, and in this group 38% had sustained long-term partial remission, as opposed to 18% in the group receiving no corticosteroid therapy.”

A 1994 study, published in Clinical Immunology and Immunopathology, and done by a group of doctors from National Taiwan University, suggests that pretibial myxedema is not a result of too much thyroid hormone, but rather due to the antithyroid antibodies themselves.

So, while all of this information has been making me think seriously about getting depressed, I very much appreciated the timeliness of the poem shared today. While parts of my body seem to get uglier and uglier, it is nice to have a reminder that beauty is distinctly more than physical appearance. I’ve printed the poem out, and it’s going on to be displayed somewhere prominant in my kitchen.

Many thanks,

Bobbi

[Anonymous]

#1163576

Hi Bobbi.
I am told what I have is pretibial myxedema as well.
I have never heard of it until now but my
symptoms are very swollen legs, ankles and feet, especially the
left leg. I get up in the morning looking like elephant woman.
It also hurts, like a dull ache and heaviness, kind of hard to
explain but if you have it you know what it feels like. Is there any help for it??
The Endo says I have to live with it… I don’t buy That!!
I can pressin on my shin and it leaves a crater for a couple of minutes.
….Not Good!! I am not on any medication except Inderal. I see him next Monday
to check my levels, I had RAI in November. He is leaving this much too
long as far as I am concerned, But who am I….just the person inside
this screwed up body of mine… I have gained about 35 lbs since last November and I do
not like it one little bit.
Anyway sorry for rambling on but I get sooooooodepressed sometimes I just want to
crawl into a hole and ride out the storm. Sorry for spouting but
thanks for listening
Lynn from T.O.

[Anonymous]

#1163577

Bummer about the dermopathy Lynn! From what I have heard, the only thing is to use cortisone cream on it. I believe Nancy P had that also.

Hope you can make chat tonight! Bruce

[Anonymous]

#1163578

Hi, Lynne. Well, it seems you and I have different forms of this particular Graves’ wrinkle. You couldn’t make a crater in my legs unless you used a power drill. They are somewhat swollen, but very, very hard. My endo sent me to a dermatologist, who prescribed twice-daily annointings of my legs with a hydrocortisone cream. I don’t see much progress yet, after about two/three weeks of it treating it. The dermatologist gave me a copy of some pages of one of her texts, describing the problem. It was written in “medicalese” — a language only closely approximating English — but with the help of a dictionary, I think I understand the gist of it. Both my type (hard plaques) and yours (diffuse non-pitting edema on the shins) were described. The treatments listed were steroids “administered under occlusive dressings or delivered by intralesional injection” (it said it “may” help), plasmapheresis (whatever that is) and (ditto) gradient pneumatic compression. “Therapy of hyperthyroidism does not improve the cutaneous lesions and, often, localized (i.e. pretibial) myxedema develops after it. Localized myxedema may also clear spontaneously.”

Not much help, I know. Given that your type and mine are different, I don’t know whether the steroid creams would work for you, but you might see if you can conjure up a dermatologist — or at least get your endo to answer your questions in a more satisfactory manner. I do so hate it when they tell me I simply have to tolerate whatever is going on. Perhaps, if they prefaced their comments with, “we’ve tried all types of treatments for this” (and naming them) and then saying nothing did much good, I’d at least feel that I was being treated with a bit of compassion.

Bobbi

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