Lipedema - A Fat Disorder
March 2, 2019 Carol Rowsemitt
“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:
but that’s pretty technical.
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.
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
If you have lipedema, you’ll be interested to see Catherine Seo’s documentary: “The Disease They Call Fat,” available on Amazon Prime.
Pill Poppers vs. Weight Watchers?
September 12, 2012 Carol Rowsemitt
Now that two appetite-suppressing medications have obtained FDA approval, you’ll be hearing lots of discussions posing an either/or view. Should you use medications to lose weight and rely on a magic pill, or should you watch your diet and get more exercise? Weight Watchers or Pill Poppers? Which is the best approach? I believe this is a ridiculous view of the problem. We know that the human body is designed to want food whenever it’s available. We know that the pathways in the brain that cause strong desire for food are the same pathways involved in addiction to narcotic drugs. So this is a major battle. Or should I say “war” because this is a long term process with no end in sight?
You bring all of the tools you have available to fight a war. You wouldn’t go to war using just the Army, while leaving the Navy and Air Force behind, would you? Would you say “Oh, we’ll bring them in later if we need them.) Use all of the resources at your disposal.
Sure, there are some people in our society who can lose weight and keep it off without help from medications. There are some people who can quit any kind of addiction by going cold turkey. My father quit smoking cold turkey at age 32 and remained tobacco-free for the rest of his 92 years. But does that mean everyone can do these things? Why did we turn these addictions into moral questions? Before we had an understanding of the biological mechanisms of addiction, we felt these were moral issues. Alcoholics, drug addicts, smokers, all of these people were considered to be of weak moral character. The more we have learned about the biology of addiction, the more we understand that there are many biological differences between individuals. Sure we all know that people have different hair and eye color, and different likelihoods of reaching a specific height. Those are things you can clearly see. Do you think I am a failure because the NBA never even considered me for a job in pro basketball? (I’m not much over 5 feet.) Of course not. So let’s start accepting the fact that there are differences in people’s brain chemistry, stomach hormones, insulin levels, etc. that make it harder for some people to avoid the most appealing foods. And don’t forget that the most successful people in primitive times were the ones who managed to get the most food so they could live long enough and have many children who survived to reproduce. We are the product of those success stories.
Bottom line here: Let’s use every tool we can to achieve weight loss. You certainly have to consume fewer calories, one way or another. (Lots of ways to do that. We’ll discuss that at a later date.) But why not help people eat fewer calories using medications that can decrease interest in food and make you feel full sooner. In our society, we are stimulated by the sight of food almost constantly – every place from the bank to the office supply store, to the gas station – put food in front of your face, to say nothing of the ads on TV. This is way more challenging than it was even 40 or 50 years ago when food was sold at grocery stores only and fast food restaurants had not yet appeared.
I often hear people say, “I like to take as few medications as possible” or “I don’t believe people should take medications to lose weight.” (There’s that moral issue again.) But when you consider that losing weight can reverse or prevent many problems, it starts to become a different question. Many people have all three of these diseases: Type 2 diabetes, high blood pressure, and heart disease. Often, one person will be on a total of nine or more medications just for these three problems. What possible reason could there be to avoid using medications that can help with all three of these problems? It’s certainly well known that most people will see improvement of each of these conditions if they can achieve and maintain weight loss.
So how come there are people who remain skinny and aren’t so interested in food? Some of these differences are genetic and some are environmental. Some environmental effects occur in the womb, based on how much food your mother had while she was pregnant with you. So we are all different for lots of reasons. Many of those reasons are not your fault. Get past the blame business here. Now look forward and see what you can do about it.
In future posts, we’ll talk about some of the other tools (or weapons or branches of the military) you should be thinking about using in this fight against the waistline.
“The Fat Trap” by Tara Parker-Pope in the New York Times
Febraruy 14, 2012 Carol Rowsemitt
“Do You have to be Superhuman to lose Weight?” was in big letters in The New York Times Magazine on Jan. 1, 2012.
So here I go again:
Losing weight and keeping it off is very hard to do without help because:
1) hunger and cravings are intensified after even a small amount of weight loss, and
2) metabolism decreases when caloric intake is lowered.
What kind of help am I talking about? Prescription medications to maintain normal metabolism, decrease interest in food, and make you feel full with less food.
This time I have help from a woman named Tara Parker-Pope. She works for The New York Times. Someday, I hope to meet her so that I can shake her hand. I try to keep up-to-date in my field. To do so, I’ve been going to The Obesity Society annual meetings for the past eight years. I also read a lot of what’s published in the scientific literature. And I’m very impressed with what she has done.
Ms. Parker-Pope has pulled together almost all of the important research addressing the forces which make it difficult for people to lose weight and keep it off. Since she’s a professional journalist (and I am certainly not), please read what she has to say. It should help you stop feeling guilty about your struggles with weight.
The one thing she hasn’t pointed out is the relationship of leptin to thyroid hormones. She discusses the role of leptin in lowering metabolism. The way leptin lowers metabolism is to decrease the active thyroid hormone (its nickname is T3) and increase a hormone known as “reverse T3.” No one doubts that lower T3 decreases metabolism, while some people in the field do not believe that high reverse T3 also lowers metabolism. But leaving those details aside, just realize as you read her article that leptin acts as a switch to decrease metabolism by changing the ratio of these two hormones.
So go take a look at what she has to say!
The Latest Research
February 14, 2012 Carol Rowsemitt
The Latest Research
I’ll occasionally show you information about interesting research results that can help keep us all focused on how we should be living our lives to obtain and maintain a healthy weight. This one is from today’s New York Times: Click here for article
While the results may not be a big surprise, it’s always nice to have these concepts reinforced. The Nurses’ Health Study and The Health Professionals Follow-up Study have been going on for years. A group at Harvard Medical School (Walter Willett of The Mediterranean Diet is the best known) have studied thousands of men and women over time to find out what they eat, how they live, etc. and what health problems they have developed. Some pieces of this have been ongoing since 1976.
So what’s the big news?
As people reported changes in eating habits over time, the following results were seen:
Increasing the amounts of fruits, veggies, nuts, low-fat yogurt, whole grains, and diet soda in their diet was associated with decreases in weight over time.
For people who increased whole-fat dairy, potatoes* in any form, refined grains, sugar-sweetened beverages, 100% fruit juice, sweets, desserts, processed meats, unprocessed red meats, trans fats, and fried foods, the scale went up over time.
You can say: Duh! if you want. But for me, this is a reminder that there’s no short-term game here. This is permanent lifestyle change. In general, it does not speak of absolutes. Also the data don’t suggest that everyone must entirely give up some of the delicious refined grains, sweets, etc. (However, for some individuals, there may be reasons to swear off certain foods. More about that later. . .)
*By the way, in the original research article, the authors don’t specify white versus sweet potatoes. From what I know about this field, I suspect that the effect is due to white potatoes. Sweet potatoes have so much fiber that they act more like a whole grain than like a potato.
Why do I always regain the weight I lost?
November 4, 2011 Carol Rowsemitt
Something very important happened last week. I’m sorry I haven’t gotten this note out sooner:
The New England Journal of Medicine published an article (10/25/11) on an excellent piece of research. The study was designed to look at hormones and other factors involved in metabolism, sensations of hunger, and fullness in people who lost 10% of their body weight. They gathered data before dieting, after the loss, and after 1 year of maintaining the weight loss.
The results show that after weight loss, people were more interested in food, hungrier, and felt less full after eating than before the diet started. Measurements of hormones involved in hunger and fullness all changed in the directions expected and probably caused these differences in sensations. Thyroid hormones were not measured. However, leptin, a hormone involved in regulating metabolism, decreased. For those of you who know something about thyroid: a decrease in leptin causes a decrease in free T3 (which speeds metabolism) and an increase in reverse T3, changes which slows metabolism according to many of us in the field.
And here’s the shocking result: These changes were still found when the testing was rerun one year later! Let me say that louder: These changes were still found when the testing was rerun one year later!
Some of the things they measured were heading back toward normal, but they were still more similar to values right after weight loss than they were to the starting values.
On its face, it looks like horrible information to hear. People trying to lose weight and keep it off are going to think this is terrible. But I think it’s wonderful and let me tell you why. Because it’s about time the world looked at this differently. Some of us who listen respectfully to our patients and understand the biology could have predicted these results – and it’s nice to see the truth put out there. I’ve never seen a study with these measures carried out a year later. That’s an important piece of what they have done. You have to know the enemy to fight it. Your body is biologically designed to save your life when there hasn’t been enough food coming in. You are consciously smart enough to know that losing weight is a healthy thing to do. But your primitive body says, “Oh my! I haven’t gotten enough to eat lately. If I don’t grab everything in sight whenever food is available, I’m going to die. Also, since there was a time of limited food in the past, you never know when it’s going to happen again, so I’d better store extra calories.” Plus, your metabolism has decreased, causing you to burn fewer calories than before weight loss whether you are sitting or weight-lifting. Our primitive body is pretty hard to fight.
So I think this is good news. If you struggle with weight, you’ve been carrying around a lot of guilt with the extra weight. Now you don’t have to feel guilty about the fact that the chips or cupcakes or whatever are calling to you in a louder voice after you’ve lost some weight.
So many people say, “You shouldn’t take medications to lose weight.” I think this work strongly shows that, for some people, medications are part of the answer. Not the whole answer, but part of it.
This article shows the reasons why I believe in prescribing a variety of medications to help decrease appetite, increasing fullness, and maintain normal metabolism both during the weight loss attempt and, if needed, while working to maintain weight loss.
Here’s a link to the New York Times with an article that describes the research findings: Click here for Article
Keep up the good work.
A confession: A donut in my House
Ocotber 27, 2011 Carol Rowsemitt
In office visits, we’re often discussing what’s known as the obesogenic (obesity-creating) environment around us. We can’t control it all. When you drive by a billboard with appealing food,please don’t close your eyes.
But we can control some of it. A couple of months ago, some young friends showed up at my house with one of those lovely pink cardboard boxes. My brain quickly said,
“DONUT ALERT: Highly appealing food with warm emotional history has invaded inner sanctum.”
My response was classic. With distain and dismay, I mustered an accusing tone of voice. I yelped,
“WHAT? You brought donuts?”
Then I responded with a practiced approach. I looked at the person sitting next to me, smiled graciously and said,
“Do you want to split one?”
He said yes and we split a donut. I was pretty proud of myself for not eating a whole one.
However, a few minutes later, I stood up, walked the three steps across the room to that pretty, pink box, tore a donut in half and consumed another half of a donut. So much for not giving in to the siren song of the sugar/fat combo that is my downfall.
“Oops,” I thought, “There you go again. And you do this for a living – trying to help people stay away from food that is appealing and unhealthy.”
My young friends didn’t seem to believe me at first when I commanded,
“When you leave, you will take the donuts with you.”
They argued a bit; then louder and more firmly.
“When you leave this house, you will take the donuts with you.”
They looked downright startled. Then I said,
“A donut in my house is a donut in my mouth.”
We visited for a while during which time I must have sat on my hands because I can proudly say that I did not eat another one. But that’s because they did take them with them.
So that’s my confession. Many of the challenges of trying to control weight are like this: It sounds simple, but it isn’t easy to say no to the foods we love. These are foods full of calories that our bodies crave because it was important in primitive times when food could be scarce.
So here’s one of the things you can control:
1. Get the junk out of the house.
2. Don’t bring the junk into the house.
3. Listen to yourself: You say you buy it for your___________(fill in the blank grandchildren, children, spouse). Say that in front of the mirror. Is it really true?
No one needs this stuff. It isn’t good for any of us. Sure, some people can “get away” with eating it in terms of their weight. But what is it doing to their arteries?. . .their mood swings? Is it helping them focus on a healthy lifestyle? And do you need it out of the house? Aren’t your needs important?
Think about it.