subcutaneous fat loss, cracking joints

Messages
8
Likes
3
I experienced generalized fat loss very recently. About 9 years ago I was diagnosed with CFS. After a few years it got better, although I never fully recovered. February-March this year everything got worse. A few weeks after a streptococcus infection which was treated with antibiotics for 10 days, I suddenly got joint pains and cracking and severe subcutaneous fat loss throughout my entire body, from face to feet soles. I lost 10 pounds in weight, but put them back on. The fat loss however stayed. There seems to be a fat redistribution as well (more fat in breasts and abdomen which I really notice since I am very slim).
The doctor only found elevated ASO titers at 800, some vitamin D deficiency but not too bad, slightly elevated uric acid and rather high glucose level (this might be connected to the fat loss, I never got that problem before; suddenly I am in a pre-diabetic state). No sign of any auto immune diseases, lyme infection,.... I am very concerned by this, my appearance is changing completely and my joints continue cracking. The only thing we can think of now is Lawrence-Seip syndrome, a rare condition of acquired generalized lipodystrophy.
 
Messages
8
Likes
3
Hello Adreno, thanks for your reply.
I actually forgot which antibiotic it was. I was staying abroad and the doctor there thought it was a staph infection because I got skin boils. I think he prescribed me Metronidazole (Flagyl), thus not of the quinolone class. I do not know whether the antibiotics cold have caused this. It seems more likely to me the infection itself was a kind of trigger? Although everything is unclear now. After the antibiotic treatment the boils came back, that was after I got the severe fat loss and after my doctor at home ran a blood test and noted it was probably a streptococcus infection because of the ASO titer. He took a sample of the boils now to do a culture.By Wednesday I should get the result. Based on that he will advise the right antibiotics. At the moment I think this boil problem is not directly related to the severe fat loss etc; only indirectly as a kind of trigger maybe. My doctor has not anything seen like this before and I will go to an immunologist next week. As mentioned, we could only think of Lawrence-Seip.
 

adreno

PR activist
Messages
4,841
Likes
10,887
Strep should go away on its own, even without antibiotics. So something else/more is definitely going on.
 

Lou

Senior Member
Messages
582
Likes
432
Location
southeast US
Hi bart32, sorry to hear of your troubling new symptoms. With me/cfs we certainly get some weird ones and they are sometimes caused by things completely innocuous to others.

This may not be helpful but during the long course of my illness I've at times had cracking joints and had to figure out on my own the rather odd links to the cause.

This occurred once when I got deficient in copper. Is it possible you were borderline low and the antibiotic tipped the balance? Please note that pwcfs are rarely low in copper, usually low zinc is problem. Testing for copper is tricky, hair analysis from reputable lab is best.

Another time I figured out it was something in bread products, some additive, that caused the cracking. Stopped the bread, ended the problem.

Yet another time was when I bought a magnetic mattress, wasted a lot of money.

The point is that many things could be at the root of this. Maybe this will give you some clues where to start. Wish I had some ideas about the fat loss, but I don't.
 
Last edited:

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Likes
771
Location
k8518704 USA
Fat redistribution? Sure sounds hormonal, Bart. If your fasting BG is high and you've never been an overeater, that's probably from gluconeogenesis, in the liver. Are you losing muscle?

Cracking joints from infection? Maybe the enzyme tryptase from mast cells is degrading joint tissue. When I get sick, my joints crack a lot.

At the moment I think this boil problem is not directly related to the severe fat loss etc; only indirectly as a kind of trigger maybe.
That might be what is keeping your MCs fired up. But what MC product can account for the fat redistribution? I don't know of any - so maybe you now have antibodies because of the infection that activate the glucagon receptor.
 

adreno

PR activist
Messages
4,841
Likes
10,887
Fat redistribution? Sure sounds hormonal, Bart. If your fasting BG is high and you've never been an overeater, that's probably from gluconeogenesis, in the liver. Are you losing muscle?
Cushing's also crossed my mind.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Likes
771
Location
k8518704 USA
Cushing's also crossed my mind.
Maybe, but high doses of glucocorticoids generally lead to moon face, which is the opposite of what Bart is experiencing. I was thinking maybe high estrogen somehow. Glucagon results in hyperglycemia, then hyperinsulinemia leads to increased glucose in only certain adipocytes (estrogen controlled?), with de novo lipogenesis leading to fat accumulation there.

But then, I don't think that insulin would store glucose preferentially in breasts (does he mean moobs?). Why would the liver do the DNL then export fat so that it ends up in moobs? I don't know.

Plus moobs (pardon me for keep using that word :) ) seems the opposite of male-type belly fat.
 
Last edited:

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Likes
771
Location
k8518704 USA
Bart, do you feel as if maybe your testosterone might be suddenly very high? High testosterone can be acted on by aromatase, which converts it to high levels of estrogen. That's why steroid junkies get gynecomastia. I've heard them talking online about aromatase inhibitors, but I didn't pay much attention so you'd have to look on one of their forums to see if any are effective.

This is a long shot, but you probably have got some type of rare condition.
 
Messages
8
Likes
3
Dear Lou, Adreno and Sherlock, Thanks very much for your reply and appreciated insights. I can use all support in this extremely upsetting condition. We sure get some very strange things indeed Lou, but I have to say I never heard of this before.
I will definitely ask to check copper and hormonal values. Don't really feel like high testosterone, on the contrary even, but will let it check too.
Cushings seems unlikely. Like Sherlock says the symptoms don't really match (no gain in face etc).
Tomorrow I know the test result of the boil. Although strep is usually cleared, I thought it might stay if the immune system is already weak. I do not feel very enthousiastic to start antibiotic treatment now but will see what my doc says tom.
Most info on lipodystrophy is HIV related, which is excluded since I am HIV negative. Also genetic reasons seem unlikely. Acquired generalized lipodystrophy can be due to previous auto immune causes like Sjogren, which were not found (but maybe my cvs condition creates a similar vulnerability). The majority is idiopathic, ie for unknown reasons. For those of you interested: see also http://www.lipodystrophyunited.org/about-lipodystrophy.html and https://www.rarediseases.org/rare-disease-information/rare-diseases/byID/460/viewAbstract

There might be some influence of the thyroid as well. My TSH was rather high.
I thought the cracking joints might be related to the loss of fat.
Don't really know if I am also losing muscle tissue, they will have to do some tests and scans to check the fat changes, muscles etc
All of this seems very strange and rare indeed... I started reading about diabetes diet since I am suddenly in prediabetic state :(
 
Messages
8
Likes
3
btw yes moobs Sherlock ;-) but not very pronounced yet since I am very slim. I just feel there is more fat there when I push and I can also see it. The fat deposit in my belly is more clear.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Likes
771
Location
k8518704 USA
Hi, @bart32, it look as if you have it nailed with diagnosing acquired lipodystrophy. That explains your hyperglycemia, because lipodystrophy causes insulin resistance. Did you have a standard lipid panel, with triglycerides being high?
It even is associated with skin lesions:
"Lipodystrophy and connective tissue panniculitis"
http://rheumatology.oxfordjournals.org/content/40/9/1070.full

Here's a photo of panniculitis:
https://en.wikipedia.org/wiki/Panniculitis
Panniculitis is a group of diseases whose hallmark is inflammation of subcutaneous adipose tissue (the fatty layer under the skin - panniculus adiposus).[1] Symptoms include tender skin nodules, and systemic signs such as weight loss and fatigue.
Maybe you didn't actually have boils? Was there suppuration?
Since panniculitis is also associated with connective tissue disorders, that could maybe explain the joint effects.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Likes
771
Location
k8518704 USA
Hi again, Bart. Since leptin is the hormone that is likely at fault (having too little of it), this seems to be the test that you should have:
  • Circulating leptin levels < 12.0 ng/mL in females and < 8.0 ng/mL in males
That's from the inclusion criteria in this clinical trial:
http://clinicaltrials.gov/ct2/show/NCT01778556?term=lipodystrophy+leptin&rank=2
Short-term Effects of Leptin in People With Lipodystrophy

Before that, you should probably have had these two cheaper and more common tests:
  • Presence of at least one of the following metabolic abnormalities:
    1. --------------------------
    2. Fasting insulin > 30 microU/mL
    3. Fasting hypertriglyceridemia > 200 mg/dL
 

Hip

Senior Member
Messages
12,800
Likes
23,557
I suddenly got joint pains and cracking and severe subcutaneous fat loss throughout my entire body, from face to feet soles.
How were you able to figure out that you developed subcutaneous fat loss? Was this medically diagnosed?
 
Messages
8
Likes
3
Hello Sherlock, It seems the most plausible diagnosis indeed. Although Lawrence-Seip is a very rare disorder, even more so at my age. I have contacted the foremost specialist in this area in Belgium to arrange an appointment. It explains my pre-diabetes indeed, esp because before I didn't have these problems nor do they occur in my family. My triglycerides were still within normal range but this may be because it happened so recently. I am already surprised that the glucose level is that elevated. Panniculitis is one cause, the others being previous auto-immune disease and idiopathic. It were boils though. The culture they took recently revealed it is an MRSA infection. So now I have to take 2 antibiotics as well, starting for 1 month. I also read about leptin and that they have developed a leptin medicine which is administered in some countries to these patients.

Also thanks to Hip for your reply. It was indeed medically diagnosed and is very obvious: more veins and bones appearing etc. My global fat level came down to as low as 3 percent (before all this it was 19 percent). I read 3 percent is just enough to survive :-(
 

undiagnosed

Senior Member
Messages
225
Likes
338
Location
United States
I have similar symptoms as @bart32 including subcutaneous fat loss, joint cracking, and muscle atrophy. I haven't had my glucose level checked recently so I can't say if there is a similarity there. My suspicion for myself is catabolic wasting being driven by an underlying disease.

For some background, Figure 1 shows my weight and BMI over roughly the last 5 years. In late 2011, early 2012 I started working out and eating a lot and put on 15-20 lbs. I slowed down with the working out mid 2012 and eventually stopped altogether. Over the summer of 2015 I got a few comments about being skinny from people who know me. In September 2015 I started noticing my joints cracking a lot. This corresponds with the low dip in weight in 2015 in Figure 1. My knees have been the worst. I've noticed weakness in my legs in general. They get shaky after standing for extended periods of time. I also notice if I get to that point, my legs hurt more in the following days or weeks. It's not muscle pain though, it's like the tendons behind the knees constantly ache. A rheumatologist said my knee caps were very loose which indicates thigh muscle weakness and contributes to the cracking. She recommended physical therapy exercises. It's just odd that they would be getting so bad when my routine hasn't really changed over the last few years. It's also hard to say how much of the weight I lost was just due to no longer working out and a lower appetite versus a malignant catabolic process.


Figure 1. Weight

Regarding fat loss, I seem to be losing it from basically everywhere. The most troublesome is the bottom of my feet. The rheumatologist examined my feet and said the fat pads were very thin. I started noticing this in October 2015. I can no longer walk around on hard floors without some kind of footwear as it's too painful. So now I wear flip flops all the time when I'm inside but the problem remains. My face has also lost fat which is noticeable around my eye sockets and cheeks. The pressure from a pillow can be a bit uncomfortable when I'm laying down on my side due to the reduced padding on my cheek bones. Similarly, my butt and the underside of my thighs get sore from sitting in a chair. I have to avoid hard chairs as they are now very uncomfortable. I also have some pain grabbing things with my hands like door knobs and have to be careful. Since December 2015 I've noticed deep wrinkles in my fingertips on and off as shown in Figure 2.


Figure 2. Fingertips

They seem to be most prominent after holding something like a phone or steering wheel. They are distinct from the wrinkles caused from being submerged in water. I'm wondering if they're also a sign of fat loss in the finger tips. Anyone else have similar issues?
 

undiagnosed

Senior Member
Messages
225
Likes
338
Location
United States
I had my leptin levels measured recently (10 AM, not fasting). As @Sherlock pointed out, low levels are associated with lipodystrophy. My result was 0.5 ng/ml. The test reference range is 0.4 - 4.0 for a male over age 20 with a BMI of 21. So, I'm right at the bottom of the range. However, the range is low compared to the numbers I've seen referenced elsewhere. For example, this paper states that hypoleptinemia in HIV patients is ususally considered when serum leptin level is < 3 ng/ml for males. This clinical trial for HIV lipodystrophy leptin supplementation specifies males over 18 years old with an AM fasting leptin level < 4 ng/ml as an inclusion criteria. According to this paper, leptin levels do not show acute changes in the hours following food administration. So I don't believe the fact that I wasn't fasting would have a significant impact on the result. Additionally, fasting would reduce leptin levels. In any case, my leptin level is well below the referenced thresholds. So, the result is consistent with low amounts of adipose tissue and possibly lipoatrophy. I still need to get a lipid panel and CMP to investigate further. Anyone else out there had their leptin levels measured?
 

undiagnosed

Senior Member
Messages
225
Likes
338
Location
United States
I just had fasting lipid and CMP panels done and there weren't any values out of the reference range. Here are the applicable results:

Triglycerides: 70 mg/dL
Glucose: 82 mg/dL

So no hypertriglyceridemia or hyperglycemia.
 
Messages
3
Likes
4
Undiagnosed, did you ever figure out what is happening with you in regards to the fat loss, wrinkled fingers, atrophy of fat pads in feet? I'm a 30 yr old male going thru exact same thing. Got deathly ill after a virus and amoxicillin regimen, 11 months later started realizing the fingertip changes and the rest has quickly become worse.