Hi all,

I have these spots on my legs for many years. I first started noticing them when I was in high school, I'm not sure of which grade. I have been type one for 24 years. They say these can related to impact, which is possible, as I was involved in cheerleading and gymnastics since grade 6.

Lotion does not help. I have also had steroid injections and steroid spray applied to it. I have also been given various prescription creams and gels, and none of those seem to help. The steroid shots did take away some of the redness, but it is still there. (this treatment was provided by a skin and vein "specialist")

My endocrinologists have not had much to say regarding these, and dermatologists tell me to see an endo.

The texture of my skin in these areas is taut and shiny. You can see blood vessels and hair does not grow in these areas.

My BG control is good--I was a 7.2 last a1C. I am also hypothyroid, celiac, and pretty carb sensitive. Any advice or feedback is appreciated. This is something that has been plaguing me for years.

Tags: Dermopathy, shin, spots

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i had these too, when I was first diagnosed...in the exact same area. i too went to dermo and my endo did tell me it was diabetes. i haven't had any for nearly 2 years now as soon as my A1C came down. heat made it spread, for me. i never put anything on it.

I lived in Florida for about 3 years and a lot more popped up for me while I was there. I think you are right in that heat can cause it flare up. This particular spot in the photo is the same one that I got in high school. Its been there for more than 10 years.

yes, it would also come back in the same area for me too and would spread, like it had some funky looking 'veins of blood vessels in it'.

Hi Anna: :)

If it's not one thing it's another with Diabetes, eh?

I still have a patch on my left ankle which looked similar to yours. Mine started as a dime-size red spot and through the years became the size of a baseball. It changed colours also. It did not hurt or itch. I was 19 when it started. My Endo way back in the '80's, recognised it and dxd me. Non-diabetics can get this also but it's known as NL.

If this is what you have, it is Diabetes Lipoidica Diabetescorum(NLD).

A few years later when my Son was 2, my boss gave him a ride-on truck. The little gaffer unintentionally ran full speed and happened to hit the spot on my ankle. Later, I ended up with 3 ulcers on it which needed medical care, of course. Always protect those spots from injury.

Getting my sugars under better control certainly had helped it improve. I haven't had a flare for a long time now and the spot is skin colour but can still see the veins. I've heard with some that it disappears totally without treatment which is great. It never bothered my Hubby, so it didn't bother me much either. Seems like it's another autoimmune disease.

Photodynamic Therapy may help for you.

Here is the scientific article:

http://archderm.jamanetwork.com/article.aspx?articleid=409682

This is the short summary:

http://www.dlife.com/diabetes/complications/skin/necrobiosis-lipoidica

Thanks Terrie! That's helpful! I have been told that it is necrobiosis, and has also been told that it is granuloma annulare. I just wish I had some way to make it look better.

Anna, you are such a beautiful girl... I'm so sorry this is happening to you. I found a Wikipedia link that explains the whole mess pretty well: Necrobiosis lipoidica

Sadly, it doesn't seem there is any very effective treatment. What you've been given by your docs -- steroids -- is about the only thing with any efficacy, and minimal at that.

From a lifestyle/QOL standpoint, how do you deal with it? Since this is chronic and difficult to treat, tips you have, and others here that have had this as well, might be very helpful to others.

For example, you said you lived in FL for awhile... When you would wear shorts, go to the beach, etc., how do you handle it? Do you have a large skin-colored bandage to put over it?

To others that have had this, how do you manage it from the standpoint of your Quality of Life?

While the wiki article says inproving blood sugars doesn't help, Itake that with a grain of salt... you always have to ask yourself what the author(s) mean by "improve". Maybe getting A1c down to 7 doesn't make much of a difference, but get it down to somewhere in the 5-6% range would. It's just that, without a pump, that's really hard (nearly impossible for most people) to achieve, so it isn't considered in rendering a prognosis.

If you have insurance, apply for a pump. Get an omnipod. It has literally changed my life. You already have half the technology equation -- a CGM -- now all you need to complete the artificial pancreas is a pump.

Third component of the artificial pancreas you already have -- your brain.

I went from a crisis 11% to 6.3% in 3 months with CGM and pump therapy. My goal is to get it down under 5.5.

So my strongest advice is to put some real effort into getting a pump. If you have insurance, go for it. If not, talk to Medtronic, Insulet, etc. and see what sort of help programs they might have. Joslin also might be able to help. Heck, others here are far more knowlegable than I am in where to get this sort of assistance.

Main thing is, don't just accept this condition. Do everything you can to make yourself "normal" insofar as your BG control is concerned. As Terrie said, better control helped her. Hard as it is to hear, 7% being "good control" is a somewhat outdated standard, but still the one in use, primarily because, well, it's pretty inexpensive to achieve that.

And again, my heart goes out to you... For me personally, this would be hard to deal with.

Thank you dwallersv for the response.

I never cover it, and rarely wear shorts or anything where it will show. I never cover it with a bandage, as there is more than one spot and it would end up being me just wearing pants.
I did work for Disney while I was out there in FL and I worked outside, my costume have me the option of wearing shorts or pants. On the days I wore shorts, at least 5-8 people would make a comment, ask if I got burned, tell me I had something going on, etc. per day. It got to the point where if I'm in a situation where someone could ask me what it is, I stopped wearing shorts. People asking about it isn't necessarily hurtful, but having to talk about it and look at it upsets me. (For example, if I am at work or anything work related, I do not wear shorts or cropped pants or skirts that hit anywhere above my ankle. It's annoying, but it's much more annoying to try to explain these ugly patches that I really have no explanation for what they are or how they got there.)
I have tried putting makeup and things like that on it, which only minimally helps.
My pump training class is actually scheduled for next week, the 16th. I will be starting on the t-slim then. I'm hoping with tightened control, my new CGM and my new pump, that I will have better results.

Great news about the pump, Anna!

You'll be able to get much tighter control, without a whole lot of work. Are you having pretty big jumps in the morning from Dawn Phenomena? That was my biggest struggle, and after tweaking and tuning basal for a month, I've almost got my mornings flat-lined (while I'm asleep from 4-6am, and then the rest of the morning).

Good luck, come back for pumping advice, and please let us all know how your BG and the skin leisons progress.

Best of luck!

Dave


From a lifestyle/QOL standpoint, how do you deal with it? Since this is chronic and difficult to treat, tips you have, and others here that have had this as well, might be very helpful to others.

Gee Dave, I didn't have 2 heads or 3 eyes. :) I had a red spot that grew bigger. Some people thought it was a burn, so I let them continue thinking that. Most people through the years, didn't notice it or didn't say anything if they did notice. So I was making it bigger a deal than anyone else. I did tell my Family and Friends who asked.

My boyfriend(Hubby now) didn't mind it, so why should I? I sometimes softly brushed a cream powder, my skin tone, to make it less colourful when I wore shorts or I'd wear darker nylons sometimes when I wore a mini or other shorter skirt/dress and high heels. I did get whistled at and asked out many a time.

At some point, I used cortisone cream and others which didn't work. I got get my blood glucose under better control which is helpful for all Diabetics. (Keep in mind that non-Diabetics can get Necrobiosis Lipoidica also). I had heard of the light therapy but by then I said "heck with it". It's not that important to me. I still wear a bathing suit, shorts and sometimes a dress.

Through the years I've seen people lacking an arm or hand, work in an office and laughing with their friends. People without legs swimming or "walking". I smile and I applaud them. I think this generation for the most part are more accepting of others diseases, missing parts and skin conditions.

I guess it's a mindset. It's up to the person to decide what quality of life they want to experience. To hid in a closet or to go out and play in the sunshine.

Anna, is indeed a beautiful lady. I hope that she will either find something that works for her to calm away her fears or decide to enjoy her life and most likely finding Mr. Right On, if she hasn't already.

My mistake, Terrie...

Seriously though, I think the Kleig Lights on some of the photos on the wikipedia page make it look far worse than it typically is. I've never encountered this condition before, so I'm a total noob :-)

Glad to hear it doesn't impact your life nearly as much as pictures might lead one to think.

And stop it with the talk of mini skirts and high heels. This is a family site [grin]

As for Anna and Mr. Right On, I don't think TUD needs to worry :-)

Ha Blinky!! Okay, three eyes aren't so bad. That's okay, Dave. No biggy. Your comment just surprised me with the words you chose. You asked about lifestyle/QOL, so I answered you. Nicole said it perfectly. In other words: People who normally ask about different physical changes are asking because they are concerned about the person.

Pardon me! I believe Tud is PG13 and some start wearing mini's before that. 8oX

UGH! I have a 15 year-old daughter, going on 25. Believe me, I know...

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