Lipedema conference - part 1

By Tatjana van der Krabben

Saturday May 17th the Stichting Nederlandse Lipoedeemdag (Dutch Lipedema Day Foundation) had their 4th lipedema conference. This is not a meet, but lectures only. Stichting Nederlandse Lipoedeemdag offers accredited attendence for medical professionals, mostly physical therapists, but patients can attend. It's impossible to cover the entire day, but I will touch upon some of the highlights or otherwise remarkable quotes and finds.

Lipedema Directive 2014

The day opened with dr. R.J. Damstra, dermatologist  and president of the Lipedema Directive 2014. The lipedema directive is the first Dutch set of guidelines for lipedema treatment, to be applied nationally. It was approved recently and is yet to be published.

It's multi disciplinary: doctors and therapists are supposed to contribute to treatment. It zooms in on functioning and limitations and encourages to look beyond the accumulated fat and also addresses, for instance, loss of strength, knee problems and foot problems. Liposuction gets a mention in this context, but strictly to enhance mobility when absolutely necessary. As dr. Damstra puts it: it's surgery and damage of the lymphatic system is realistic in surgery. Although he does acknowledge that today’s tumescent method is far, far safer than the old dry method.

It also encourages testing hormones for additional health issues: thyroid, adrenal glands, pancreas and pituitary gland. The patient’s weight is also addressed. Yes, 'weight'. After all, your weight may hinder you. This is not intended as a claim to say you can lose it all, if you only wanted to. This is about getting to be the best you can with this condition. He added the example that the population as a whole is getting bigger, which makes it an issue to each and all, including those with lipedema, to take responsability for their food intake, compared to their level of activity.

Dr. Damstra refers to lipedema as a chronic condition, much like diabetes. Something to learn to live with and monitor. He encourages a pro-active attitude and doesn't support endless sessions with therapists. He differentiates between treatment and maintenance phase, where the patient takes over and applies the tools as taught.

Dr. Damstra brought forward a couple of interesting statements throughout his lecture.

• To him lipedema is not lipedema until physical complaints beyond (some) fat accumulation occurs. So according to him, just having the pear shape doesn’t equal lipedema.
• Lipedema does not stem from a lymph vessel deviation, therefore it's not a lymphatic condition.
• Lipedema rarely occurs in Asia.
• Lipedema has not made ICD-10 recognition yet, because it's difficult to fit their criteria. For starters, naming the cause is required, which is unknown at this point.
• How come the feet are never affected? Feet barely have fat cells.
• Fat acts like a sponge and attracts water. The more fat, the more fluid you carry, but that does not make it (lipo)lymphedema per se.
  
  He also touched upon a few liposuction myths:
• There is no such thing as sucking away ‘all fat’. There will always be (some) fat staying behind, which is as it should be.
• Sucking out only bad or the wrong fat cells is not feasable. That would require screening one fat cell at a time to determine which could stay and which could be sucked.

Now, if I can nag about something: it doesn't say which diet is recommended. This is something they want to leave with the 'experts', dieticians. And we all know what most dieticians come up with: high carb, low fat. Plus, most are oblivious to lipedema. Hence the quotation marks.

I picked up something interesting regarding exercise. Dr. Damstra recommended Graded Activity (GA). GA suggests an exercise program that gradually becomes more demanding. You do the load as agreed with your therapist/coach. So you push yourself on a bad day and don't overdo it on a good day. Personally I haven’t been making progress in ages. I don’t go to the gym on a bad day and hit it hard on a good day, but this leaves me ‘only’ stable. So this is definately something I intend to apply.

Applying LPG

The second lecture was about LPG skin care using the LPG Cellu M6 KM machine. I’m naming the machine, because it was said this one was more powerful/effective than earlier models. It was tested on only 10 ladies, but it was interesting to learn a therapist thought it safe and possibly beneficial to try. 9 out of 10 reported positive effects like less pain and a less heavy sensation in the leg. The tenth lady was the only one at stage 3 and had to give up because treatments were too painful.

It was a small group and only 10 treatments, but I did want to give this a mention, because the question whether you can do this safely comes up a lot on forums. It’s a bit early, perhaps, to take a stand on that question, but it’s good to know it’s on the radar somewhere. She did warn about areas with varicose veins. She said it was best to work around it. Hopefully more tests can be done.

Cortisol and Estrogen Connection in Lipedema Recovery - Part II

by Maggie McCarey

Sorry, for taking so much time to write part 2 of cortisol and estrogen connection.  Studying it was like learning a new language (which is ironic since my life depends on knowing speaking it to my primary). After reading about cortisol and estrogen until my eyes crossed, I came across one doctor, Alfred J. Plechner, who brings the adrenal gland into our estrogen discussion and oddly makes the discussion understandable.  He writes:

I have long regarded adrenal dysfunction as a well-spring of excess estrogen which may contribute to hormonal imbalances, immune destabilization, and increased vulnerability to disease. As a practicing clinician, I have consistently found elevated total estrogen as part of an endocrine-immune derangement present in many common diseases of dogs and cats.

     

Wait.  What?  Dogs and Cats?  Yes, Alfred J. Plechner is a veterinarian, but before I discuss Dr Plechner’s findings, I want to share why I am so interested in this topic.

      

I am looking for 1) why lipedema spikes during female reproductive stages;  2) how to stop lipedema in its tracks during these reproductive events; and 3) how to stop my ever-present hormonal surges, sore breasts, occasional bleeding, premenstrual crampiness, and peaking emotions since post-menopause 8 years ago.  (Yes, I have had the traditional medical tests designed to detect cancer but otherwise do not address serious medical issues)

Like many of you, one or more hormonal events triggered a lipedema spike in my body. Mine: huge weight gain at menses and at the birth of my first child, a boy.  Then weight loss when my daughter was born and during peri-menopause.  A weight gain, all-time high at menopause with a new addition of much immovable weight gain in my stomach which had been no more than a pouch.  And now, post-menopause, no more weight gain, as I have lost slowly and steadily for the last three years but with much unexpected hormonal activity even though my reproductive stages have supposedly ended.

     

Because women are finally sharing their collective history of post-menopause with such consistency, a new understanding of menopause is being forged and a new phase, perhaps, will be named.  Oh wait, in my research, I discovered there is such a name. Are you properly strapped into your ruby red slippers?

After menopause, every woman will be affected differently and they will be at higher risk for breast cancer, cardiovascular disease, fibroids, post-menopause weight gain, urinary incontinence, a thin, watery vaginal discharge tinged with blood signaling vaginal wall atrophy, hair loss, and  osteoporosis.  At the same time ovulation ceases, progesterone drops to zero while estrogen drops 40 - 60% from its pre-menopause level.  In order for the body to be healthy, estrogen and progesterone need to be in balance, and when they are, women are disease-free. This is called post-menopause syndrome.                                   

I just want to repeat the salient sentence in the above paraphrase: 

In order for the body to be healthy, estrogen and progesterone need to be in balance, and when they are, women are disease-free. When the estrogen and progesterone are not in balance, a woman sufferers from post-menopause syndrome. 

Is it possible to ascertain cortisol level in the human body? Yes, with a non-invasive, inexpensive, simple 24-hour urine test and now with hair analysis which tells the history of cortisol in your body.  Is it possible to test one’s progesterone and estrogen levels? Through blood tests, yes, and more accurately, saliva testing is the most accurate test to determine steroid hormones (i.e. progesterone, estrogen, DHEA, cortisol, and testosterone) levels. Saliva testing is much more accurate and useful than any blood test when attempting to determine who needs hormone replacement. (http://www.bhrtdoctors.com/menopause2.htm)  

Why then are the mammogram and pap smear the only yearly tests offered to determining women’s health when inflammation, estrogen, progesterone, cortisol, and testosterone levels can easily and cheaply be measured? And let’s not forget DHEA, a naturally occurring hormone secreted from the adrenal gland to help with weight loss and muscle strengthening.

   

It is important at this point to understand the adrenal gland.  Its purpose is to secrete hormones such as estrogen, progesterone, steroids, cortisol, and cortisone, and chemicals such as adrenalin (epinephrine), norepinephrine, and dopamine. I have often heard that a weak adrenal gland is the root cause of most disease and the good news is that you can test your adrenal function at home.  It is called the paradoxical papillary reflex test.

To take the test:

Standing in front of a mirror in a dark room, take a flashlight and shine the light into one eye at a 45-degree angle from the side. Watch your pupil. When in the dark, your pupil should be dilated (open). When you shine the light it should constrict.  The duration of constriction can indicate adrenal function, though there are other causes for a positive finding on this test. Wait 30 seconds in the dark before repeating with the other eye.

PUPIL CONSTRICTION                                           POSSIBLE FINDING

Stays constricted for at least 20 seconds                    Healthy adrenal function

Fasciculates (pulses) after 10 seconds                        Fair adrenal function

Fasciculates (pulses) in 5-10 seconds                         Poor adrenal function

Immediate pulsation and dilation                               Adrenal exhaustion

www.precisionnutrition.com/what-do-theadrenal-glands-do

And now finally back to Dr. Alfred J. Pletchner who is accredited with applying his research with dogs and cats to something that applies to humans as well: Pletchner’s syndrome.  He explains his findings as follows:

Q. HOW DOES EXCESS ESTROGEN AFFECT MY IMMUNE SYSTEM?

A. Imbalanced CORTISOL allows for the pituitary gland to over-stimulate the production of excess ESTROGEN. This excess estrogen not only causes an inflammation of the lining cells of all arteries in the body, including those arteries to the intestines, but causes the B and T immune cells to become deregulated. It also causes the B cell to reduce its production of antibodies. This in turn causes further turmoil in the gut. When regulated, the B cell protects the body against bacteria and makes protective antibodies to vaccines and other intruders. When the T cell is regulated it protects the body against viruses and plant invaders like yeast and fungi. The hormonal antibody deregulation is why all of these intruders can cause medical effects (illnesses and diseases). Many substances are used to combat these EFFECTS, but while this is being done, the CAUSE must also be corrected, otherwise the EFFECTS will continue. The continuous use of antibiotics and anti-yeast and fungal medications alone will not correct the problem since they can only be managed effectively through replacement and correction of the hormonal antibody imbalance.

(http://drplechner.com/learn/plechner-syndrome/)

So, first things first.  Take your home test or go to your doctor and ask for all of the tests that are available to you so you can know exactly what your adrenal gland needs.  It’s a very important thing to do because before considering any medication aimed at hormone replacement you should know adrenal function, blood sugar balance, and gastrointestinal function.  Understanding the state of your adrenal gland seems to be one of the most important pieces of information you and your primary can have, especially if you are about to enter a hormonal reproductive event that can be monitored via hormone balance.

Relationship between cortisol and estrogen, part I
Relationship between cortisol and estrogen, part III

Men with lipedema

By Tatjana van der Krabben

“There are only two known cases of lipedema in males.” Does that line look familiar? The overview papers are quick to quote this line. Too quick.

This blog is because we care about the men in our lives and share the concerns of women who suspect their male relatives may have the same genetic flaw.

Seven cases found in literature

N. Laleman (2011/2012) wrote the dissertation Lipoedeem: Pathofysiologie, diagnose en behandeling (University of Gent, Belgium). She has traced seven cases of lipedema in male patients with reference to the following papers:

* Langendoen et al (2009) Lipoedema: from clinical presentation to therapy. A review of the literature.

* Fonder et al (2007) Lipedema, a frequently unrecognized problem.

* Chen et al (2004) Painful fat syndrome in a male patient.

Seven cases she found. Not one or two, which is usually being quoted off each other. What I also like about this dissertation is that Laleman states that only seven cases were described in literature. Not that there only are seven cases. That brings me to my next point.

Not every case is mentioned in literature

That’s right. Despite the fact it’s still rather unique in literature, not every doctor coming across a case has jumped to the opportunity to publish on it. My first (digital) encounter with a male patient was in 2008, just after I got diagnosed. I’m a research junkie and got a lead: liposuction. At the time it was more difficult to find information, so I also checked out forums. I came across a depressed man, desperate for liposuction, but without funds and so far no help from his health insurance; he had lipedema. He implied he would kill himself if he couldn’t get liposuction and look ‘normal’ again. I was feeling rather frail myself, coping with my own diagnosis. I wasn’t at that place in my life where I felt strong enough to reach out. I lost sight of him.

The second time was when brainstorming for the book Lipedema: Help, Hope, Healing. We were unhappy with the lack of practical information, awareness and support. We wanted to do something with that. While going over genetics, Maggie McCarey pointed out she not only had female relatives with lipedema, but also male relatives: both her father and grandfather had lipedema. Her father was formally diagnosed, but never made a paper. Looking back, Maggie realized her grandfather must also have been among the long line of relatives with lipedema.

Through Big fat legs (www.bigfatlegs.com) we know of 3 more cases. Two formally diagnosed and one currently getting tested in a renowned clinic to get diagnosed. Big fat legs (by Maggie McCarey and Stefanie Gwinn Vega) is commonly found by people who have had quite a journey already with their symptoms, but are struggling to get diagnosed or just got diagnosed. People, yes, sometimes men as well, trying to figure out why they have unexplained ‘fat legs’.

And there’s more, although not formally diagnosed at this point. Some women with lipedema have expressed their concerns on forum about their sons, having unusually large legs in comparison to the rest of their body.

How male cases are more or less being dismissed

Each male patient was also diagnosed with a hormonal imbalance (Laleman 2011/2012). As a medically untrained person I say “So?”. With women it tends to flare up with hormonal changes. It’s not like we’re so well balanced hormonally at these stages of our lives. Although not in the literature yet - that is to the best of my knowledge - several doctors (Herbst and Huijberts) have gone on record in lectures pointing out the risk of contraception with hormones in case of lipedema. It can cause the lipedema to flare up. They mostly spoke of birth control pills, but in recent years many women have been getting rid of coils with hormones and HRT etc. and are feeling better for it. That’s nothing formal, tested, medically acknowledged at this point, but still.

Another point is that (modern) diet/food, stress, sleep (deprivation) also affects hormonal levels. What is stable in this context? When is it as it is supposed to be? But I’m digressing here.

With so few cases on record it’s tempting to rule out male cases in front of your nose. It’s so rare, so this probably isn’t lipedema. Mind you, some papers even dare state only women are affected. What if your primary happened to google one of those papers? Rare, I hate that label. Rare is an excuse to dismiss it. Lipedema in women is even still being referred to as rare. No, it’s not rare, it’s often not diagnosed due to lack of knowledge of lipedema and fat bias. In men it may be rare, but it does exist. The notion is not even new: the first male case that made literature was among the 119 case studies by Wold, Hines and Allen in 1951.

With the hypothesis spreading that it is (part) genetic, we must acknowledge that men are very much part of our gene pool. They may be carriers or worse, get afflicted. For all those looking to get help for their male family member(s): if he does have lipedema, he is not alone. For sure.