[Bobbi]

#1074905

Pretibial myxedema is not a swelling of the hands and feet. I had it, and it also does not itch. (I later developed eczema in the skin where I used to have pretibial myxedema, and that does indeed itch, but my dermatologist assures me they are separate problems.) With PM, the skin develops a consistency of an orange rind, the skin toughens, dimples, and turns a bit reddish. This is typically isolated to the legs, especially around the ankes. I have not heard of it affecting the hands, either.

So, I suspect what you are experiencing is not pretibial myxedema

[Bobbi]

#1074906

I moved the following answer from a different folder. Somehow it got posted there by mistake.

by Nancy Patterson on Sat Dec 20, 2008 9:28 am

Dear Lyn,
Pretibial Myxedema is relatively hard to miss, if it is fully developed. It is caused by the same antibody that attacks the eye tissues, which might explain some eye problems. As Ski said, it is separate from the thyroid portion of our Graves’, and can occur whether your treatment was ATD’s, RAI or surgery.
Usually it itches (alot!), is reddened, and feels somewhat like the skin of an orange. Go pick up a hefty naval orange, close your eyes, and run your fingers over the surface. "Swelling" (as in edema) may or may not be present. Two things that might help identify it are an antibody test, or a round of one of the steriods (obviouusly prescribed by your doctor).
There is not a lot written about it, and what usually is written is found in dermatology journals with a great deal of histological information.
My guess is that if you start a new thread on this forum with a title like "anyone have Pretibial Myxedema?" you will hear from those of us who have had it. It makes my legs itch just to type about it. Good luck!Nancy Patterson, PhD
Founder, Graves’ Disesase Foundation
~Educate~Encourage~EmpowerNancy Patterson
Facilitator
Posts: 58
Joined: Sat Oct 25, 2008 9:47 am
Private message

[lyn]

#1019902

Does anyone have Pretibial Myxedema? I am interested in hearing how this condition effects others.
I have swelling in the feet/legs/ankles. I do not have raised bumps like and orange or any itching. My endocrinologist does not believe that it’s related to my hyperthyroidism. I’d love to hear if anyone else experiences similar swelling.

[Mickey65]

#1074907

I’m not sure if my itching is from the Graves. But my ankles and legs itch and my lower back and sides, and under one of my arms (in the pit). Those are the areas that itch the most for me, but my skin isn’t rough or anything.

Over the summer, when it was hot, my feet and ankles would swell up, but back then, I didn’t know anything about my thyroid being out of wack. It wasn’t until around Spetember when the tremors were noticed.

So I don’t know if all that above is attributed with my GD or not.

[kallikat]

#1074908

I developed really bad edema before I was diagnosed, and have been on diuretics since. My new Dr is weening me off Lasix right now, and the swelling is coming back. It’s been 3 days since I had a Lasix and I can’t wear my rings. I have had diareah for over a month, and we’re not sure why. A blood workup in 2 weeks should tell us what’s going on.
I do have some itching, but not all the time, and not in the same places each time. The skin on my legs does seem tougher, but I don’t think it’s like an orange. I hope this isn’t the beginning of PM.
My dr also thinks my thyroid may be functioning again (14 months after RAI), so she’s weening me off synthroid. My TSH is .093 and I’m taking 50mcg righrt now.

[Bobbi]

#1074909

Just because the letters "-edema" ends the term, do not confuse pretibial myxedema with straight edema. They are different critters.

In P. M. the antibodies cause the skin to toughen in much the same way that the eye muscles are "toughened" (for want of a better term) in the eye disease. It is not just swelling.

[sdlips]

#1074910

I have had Pretibial Myxedema for over 15 years undiagnosed till last week.

I am having severe pain and swelling and redness in both feet. It started in just my right foot and has now spread to my left foot and most recently my left calf. It is so painful I am on Percocet for the pain. Every single Doctor I have been to said there is no treatment except the steroids which I had tried in the beginning. I am way passed the beginning stages and have found that nothing makes it feel better. I do know that I can’t get a closed shoe of any kind on, not even my Uggs!
HELP…………………………………….

[Buttamama28]

#1074911

I went to my appt yesterday with the SS Disability doctor; who had an interest in me because he said I was the classic text book case of Graves’ Disease. I thought wow ” title=”Confused” /> what an honor? He then saw my legs, I said oh, yeah I have been fighting an infection since Thanksgiving; been on four different antibiotics and nothing is working. Not sure what it is. He politely told me that is because its PM. I said hmmm PM?
Mine is more of just discolored, with a waxy texture. It itches like the dickens, flakes really bad; the only thing seems to help with the dryness is vaseline. It is also very painful. I have no steady endo, so I’m not really sure where to go from here. I looked on the internet and it says hydrocortisone, or intravenous immoglubin (ck spelling) are the only ways to help this; but that is after your inital thyroid condition is treated.

What do I do til I can have this thing removed? Had the RAI, but it didn’t work; made me very ill within 45 mins of swallowing that horsepill! ” title=”Confused” />

[npatterson]

#1074912

You are right, antibiotics don’t work–because it is not an infection. Now that it has been "diagnosed", ask the doctor, nurse practitioner, physician’s assistant, to find out what type of hydrocortisone will help. There are different types and different strengths. Sometimes it is given as an injection, sometimes as decreasing doses of tablets–it depends on yhour case.
I was sort of laughing when I saw this post–misery loves company! Mine is trying to come back just this week.

[sdlips]

#1074913

I have had severe pretibial myxedema for over 20 years. I was only recently diagnosed through a biopsy that my dermatologist did. I knew it was Pretibial Myxedema but he wanted to do the biopsy for medical proof.

I would love to talk with ANYYONE in the world who also has this illness. I feel all alone. Whenever I go to a Doctor, I get the same response; "I have never seen anything like it in my 30, 40 or 40 years in practice." That really doesn’t make me feel confident in my choice of Doctor. I have gone to the best hospitals in Boston, New York, California and Florida to no avail.

PLEASE contact me and let me know if anyone is out there. I would really appreciate any response.

Thank you,
Ellen
email: sdlips@gmail.com
858-869-4006

[Bobbi]

#1074914

Pretibial myxedema only hits a very few people with Graves. My memory — which is not necessarily good — is that only about 1% of us develope it. And Graves itself is not all that common. So having a doctor that says he/she has never seen it is not an indication that there is something wrong with the doctor’s experience.

Mine was treated by a dermatologist. And while PT does not always go away, there are treatments that sometimes work to alleviate it.

Bobbi

[Author]

Posts