necrobiosis lipoidica without diabetes?

[CP123]

I developed unsightly discolored spots on my left shin, which I originally thought were bruises. The doctor at our local surgery said they weren't bruises, but rather eczema, and gave me some cream to apply. It didn't work. Over the next 6 months or so, it spread to the other shin. I saw another doctor and he didn't know what it was, although I told him I thought it might be diabetes. As I have high blood pressure and get blood and urine tests taken every 8 months, and they always test for diabetes, he said the spots couldn't be diabetes as it would have shown up. He didn't know what it was, and gave me more cream (a different one). That didn't work either.

Finally, in November 2012 another doctor did a blood test and biopsy. The blood test came back negative, but he said I have necrobiosis lipoidica, which he'd never seen before. Said there is nothing to be done about it. When I asked about diabetes again, he said, "Well...next year if you **happen*** to think about it, drop off a urine sample."

Now I've been thinking, what in heck were all the tests he ran before? He said they were doing "every test known to man". And, if now he only mildly suggested I MIGHT want to drop off a urine sample, why on earth wouldn't he have ordered the test for diabetes right away? It's been 2 years since the spots first appeared and they are getting worse. The 3 doctors I've seen aren't concerned in the slightest.

I'm 57, white female, 5'4 170 lbs, moderately active, high BP (on meds). I don't have any symptoms of diabetes, and more or less follow a Mediterranean diet (but without ANY sweets), and no diabetes in the family.

Should I seek other opinions? What could be causing these unsightly spots???

 

[KateR]

I just googled it and it said there was a version connected with diabetes and it shows a picture. Sorry I'm no good at doing links but just google the name. I hope it helps.

 

[Donald]

Try this link there is also a picture( by the way the picture not pretty)

http://www.patient.co.uk/doctor/Necrobiosis-Lipoidica.htm

 

[trophywench]

You can have Nec Lip without being diabetic.

If you can get hold of a blood test meter and just two test strips you can in fact do a home Oral Glucose Tolerance test.

Get out of bed one morning. Don't eat or drink anything or do anything. Test your blood, The glucose level should be between 4 and 7.

Drink a measured dose of 75g glucose (which is what is in 440ml of Lucozade, any flavour but not the 'Sports' one) and you have to drink all of it within 5 minute sof that first blood test.

Wait 2 hours. But don't do anything in that 2 hours. No physical exertion, no eating or drinking. (I mean you could wander to the loo but don't do so much as wash up or wash yourself) (You could have a wash before you start, then sit down and do all this)

Test your blood again.

Interpret the results as per

http://en.wikipedia.org/wiki/Glucose_tolerance_test

If this indicates you have either D or ipaired tolerance, off you go back to the doctors and tell him and request he retests you under clinical conditions pdq.

If he won't, change your doctor!

 

[elspeth]

Ask your Dr to refer you to a tissue viability nurse. My sister has Nec lip and was treated with honey dressings, after years of futile attempts with various creams the dressings have helped, it's not cured but improved. Good luck.

 

[Caroline]

Hope you get some good results or better advice soon. Some things can be very worrying if we don't know what they are.