Lipedema – A Fat Disorder

“Lipedema is not rare, but the diagnosis of lipedema is rarely made.”

  • Beninson and Edelglass, 1984

Family butt? Thunder thighs? Everyone thinks you eat too much. But why is it distributed this way? It seems impossible to lose. It seems different from other people’s weight problems. That’s because it is different. It’s called lipedema (Lip – fat; edema- swelling caused by excess fluid). It almost exclusively occurs in women.

For details of the characteristics, you can go to:

https://consultqd.clevelandclinic.org/making-a-definitive-diagnosis-of-lipedema/

or

https://lipedemaproject.org/lipedema-differential-diagnosis/

 

but that’s pretty technical.

Simply:

  • Fat distribution is usually from the waist down, equal on both sides. Sometimes it’s in the arms, but generally people find they take a smaller size in tops and a significantly larger size in pants or skirts.
  • Often tender to the touch.
  • Bruises easily.
  • The fat can be lumpy or granular.
  • The fat does not extend into the feet. There may be a clear line, like a cuff, at the bottom of the calves. (Over time, the feet can become swollen but that means that lymphedema has become an additional problem.)
  • Onset usually during times of hormonal changes: puberty, pregnancy, or menopause.
  • Hereditary; about 90% of the time, it goes through the maternal line.

And – more later on these:

  • Often accompanied by low metabolism/hypothyroidism
  • Calorie restriction does not reduce lipedema fat.

 

So why is it so rarely diagnosed? Because most health care providers don’t even know it exists. Boy, that does make it hard to diagnose! Over a year ago, I went to an Obesity Medicine Association conference, and Karen Herbst, MD, educated us about this condition. I think most of us had never heard of it. But if you speak to the experts, you’ll find that it isn’t taught in medical schools. No wonder we hadn’t heard about it. So I started learning about it, talked to my pal Leslyn Keith, doctor of occupational therapy. Then she got me involved with a group called the Lipedema Project, headed by Catherine Seo, PhD, and Mark Smith, MD.

 

Leslyn and Catherine have found that ketogenic diets (or “Way of Eating”) are effective for helping people lose lipedema weight. Providers and scientists who study people using keto way of eating find that metabolism does not dip in most people. But some of them do plateau while still maintaining the same behaviors. They also may have other symptoms of low thyroid. As you may already know from listening to me, traditional testing for hypothyroidism (TSH only or TSH and FT4) is insufficient and inappropriate for finding famine response hypothyroidism. We have only looked at a couple of people who plateaued on keto; they were found to have famine response hypothyroidism. When treated appropriately, weight loss resumes. So we’re very early in the process of working on this connection.

So if you now know what it is, you can appreciate that there are reasons why it’s been so hard for you to lose the weight. Find the Lipedema Project online and you will see resources including

https://lipedemaproject.org

If you have lipedema, you’ll be interested to see Catherine Seo’s documentary: “The Disease They Call Fat,” available on Amazon Prime.