Update - Spironolactone may be Helping to Retain Albumin

I traveled to the hospital with the expectation of being admitted for another round of Albumin infusions and Lasix via IV push.


Upon getting my blood work back from the lab, my primary care doctor and I happily discovered that my Albumin level was 2.1.


Why is this a good number?


I left the hospital after a 4 day stay September 2nd. and my Albumin was 2.7.  That is only .6 higher than it is now and I have been out of the hospital, (away from 3 infusions of Albumin a day) for at least 40 days.

When I went into the hospital, that stay, my Albumin was 1.7.

So, at least for now, my Albumin seems to be trending upward.

My Rheumatologist  believes the reason for this may be the Spironolactone I began taking several months ago.

I just looked up this drug and see where some folks claim it helps with fluid retention for folks with congestive heart failure.  I DON'T HAVE CONGESTIVE HEART FAILURE but   It may be  helping with my fluid retention problems because somehow it is helping my body  retain my protein (which, when low, causes  a change in osmotic pressure allowing fluid from the cells to move across the cell membranes and  'third-space').

Since my Albumin showed this 2.1 measurement, we decided I didn't need to be admitted for agressive diuresis.  We decided that I'd increase my spironolactone  as well as my daily lasix.

Dangers situations Associated with Poorly Managed Pain

Have you ever endured severe untreated pain?  Maybe you were hesitant about asking the doctor for pain medicine, or perhaps you felt you could gut it out leaving you to suffer through the nights unable to sleep.
What ever your reason for not getting your pain managed, they aren’t good enough.


Let me suggest this situation can cause unintended risks.


Here are two of my own examples:


I was in such pain that I couldn’t sleep.  So, I was laying down on the futon in the living room.


I would sit rubbing my painful toes and foot all night long thinking I wasn’t ever going to sleep.  I found out, however, that (actually) I did sleep some.

You see, I was a smoker back then.  I smoked a lot of cigarettes because (psychologically) they seemed to help.


One night I was sitting there rubbing my foot, then the next thing I realized, the room was filled with toxic-burning-foam-smoke.  I had dropped the smoldering butt onto the futon mattress, and it almost caught fire.


Another incident occurred one night, same pain situation, I put the tea kettle on for some hot coco.  Again, I unknowingly fell asleep.


I awoke to the smell of melting plastic as all the water had boiled away, a hole burned into the bottom of the aluminum, and the plastic button and whistler cap melted away.


These were two instances where improperly treated pain could have really been tragic.


My advice:  If you are in pain, you really should get it effectively treated.  You can’t let your worried that they’ll think you are a “pain seeker” (someone seeking pain medicine to feed an addiction) stop you from asking for help.


I started telling my doctor, I don’t care what you give me as long as it works.  If the medicine didn’t do the job, I let the doctor know.


Be ready to talk to the doctor about your pain.


What hurts?  How does it hurt?  When does it hurt?  What helps the pain?  What makes the Pain worse?  What have you taken for pain in the past and how effective was it? 


Having these answered when you talk to your doctor can help determine your own effective pain management and avoid sleepless night dangers like those above.

Effects of Low Protein on Hair Growth

      These are not my legs

I have experienced hair growth changes that vary with my protein levels.


When my Albumin is less than 1, for instance, I seem to lose the hair on my legs, and my facial hair as well as the hair on the top of my head seems to grow slower.


When my Albumin increases to 1.7 or more, I begin to notice stubble on my legs.


I have never been an excessively hairy fellow, but prior to my hypoalbuminemia medical condition I did have hairy legs. I’m a guy, and I don’t shave them, but for the longest time, my legs have been bald.


Now that my Albumin level is above 1.5, I’m noticing lower leg hair growth and I kind of like seeing it.


I started taking a drug called Spironolactone last spring, and since, my albumin has seemed to remain above 1.5.

Observations - Severe Edema & Albumin Replacement Effectiveness

Update - I went back to the hospital this past week.  I went in on Tuesday August 30, and came home Friday 3 days later.  I went in  with a wet weight of 189 pounds and left weighting a dry weight of 178 pounds.

My albumin level was 1.7     and my total serum protein was 3.2.  


These levels are pretty good for me, and I suspected they would be according to where my edema was most pronounced.


Edema characteristics are different depending on what the Albumin level is.  For example, when my albumin level is less than one, the edema uncomfortably manifestos  on the dorsal (top) surfaces of my feet; painfully stretching the skin almost bubble-like.  This  situation is in addition to severe generalized edema known as Anasarca.  


When the albumin level is less than 1,  the edema commonly  manifested in my scrotum, penis, as well as beneath  my chin.  


These areas are all known as ‘dependant surfaces’ because they are areas that water (edema) will dam up or collect simply because it can go no farther.  Even my belly at the belt line (my abdominal tissue) would collect fluid and hang outward  looking alot like a water bag!

In addition to severe edema affecting dependant areas, the edema at the less-than- one-level seems to manifest in my intestinal walls as well.


Furthermore, it has been my experience that I eat smaller meal portions  when the level is less than one because there is not as much room in my abdominal cavity for my enflamed intestines, my diaphragm and large portions of food.  I would feel full quickly, and would have difficulty breathing deeply (not enough room for diaphragm motion).


Prior to the severity of my edema progressing to this degree, I’ve noticed that my oral Lasix gradually lose their effectiveness.  As they do, my edema gradually increases culminating into the severe symptoms described above.


Treatment I receive for this is simple:  Albumin (human) 25%, USP  In a Single Use 50MIL vial (every 8 hours), and 60 to 80ml Lasix 30 minutes following each Albumin infusion.

Blood pressure monitoring as well as electrolyte level monitoring are a must.


I have made some observations concerning this albumin replacement therapy.  


First observation when my albumin level is so low, it takes about 36 hours before I really start urinating a lot and see a significant weight (edema) loss.  Also, salty snacks can hamper this therapy’s diuresis effects.

Another observation of mine is that body movement helps the process of diuresis. (Diuresis is the medical term for eliminating edema via urination through the use of pharmaceuticals.  Diuretics pull fluid into the bladder to be eliminated).  


I have found that taking regular walks seems to help the diuresis process.  I believe that this is due to the increasing circulatory activity.


A third observation pertains to how the edema decreases.  The first place I notice it decrease is my intestines.  Very quickly I begin to feel less bloated.  Next, my arms, then my lower legs lose their edema.  After that, I lose it in my dependant areas last.

One thing to know is that you have to use your weight to accurately assess fluid loss.  This is because you can be fooled when in bed (supine) for a number of days, your edema will have a new dependant surface:  your back.


If your back is your dependant surface, your shins (lower extremities) will be skinny though you’re edema hasn’t actually decreased.  So, use your weight.


When being weighed by hospital staff, you should ensure the scale is accurate.  If your weight when checking into the hospital  wildly differs from what you know your weight should be, you should confirm the weight by weighing on another scale.  


After you are confident the weight is accurate, you should use the same scale for every daily weight.  Additionally, you should be weighed at roughly the same time each day. 


Also, refer to your weights in terms of dry or wet weights.  I have gone in the hospital with a wet weight of 200 pounds, and  7 days later  discharged with a dry weight of  170 pounds.




Well, I’m going to leave it here.  I hope this information is useful to you in some way.

Rare Disease and thought’s about Internet Searching

One of the funny aspects of having Idiopathic Protein Losing Enteropathy (PLE) were the occasional search results that would take me by surprise.

I’m visually impaired, you see, so reading case studies and other medical literature is kind of difficult for me.


I use window’s magnifier program - an available utility that comes on computers running windows - and I only have the top 2 or 3 inches of the screen that is magnified enough for me to read the text. Whatever I hover the mouse over is magnified in the that 2 or 3 inch display window. I have the magnifier’s setting maxed out.

So, there I would be slowly reading along. I’d get deeply involved in an article and start thinking about getting a particular doctors contact info; only to get to the bottom where I’d discover the article was talking about dogs.


Another situation I’d run into is after getting to the hospital clinic appointment, I’d speak to the doctor using medical terminology. I’d also ask about stuff I’d read in articles and case studies. Additionally, I’d get him/her to explain why my etiology isn’t one thing or another.


I don’t do this so much anymore, but I seem to recall getting the impression that this annoyed the doctor.

Often, however, the doctor would complement me on having a thorough knowledge of what was happening in terms of current treatments, and my ability to explain my condition to medical students practicing their patient interviews.


I have heard some doctors don’t appreciate patients doing internet research. What happens, I’ve heard, is occasionally, some patients jump to conclusions; thinking the worst and believe that because their symptoms fit an illness (like cancer) they think they are going to die.


Still others look on the internet for what their strange illness might be and to end up self-diagnosing themselves with a minor condition. Feeling confident, they sometimes stop seeking professional medical advice only to have an illness that grows out of control.


One thing I’ve tried to keep in mind: Although some doctors are known to make mistakes, and although each doctor’s knowledge is finite (they don’t know everything), they are very well educated I. That said, have tried not to second- guess their judgment.

Could changes be Helping me? Update

　I’ve been doing pretty well for the past 2 months or so. When I say “doing good”, I mean I haven’t had to go to the hospital for Albumin and Lasix infusions.


I can only speculate as to why this is so. A few things have changed.


You see, I realize the cause of my PLE could be a number of factors and I‘m trying to address them.


One cause could be environmental so I’ve made a drastic change.


It seems my protein losing enteropathy correlates with moving into the mobile home we now occupy. So, for the past year I’ve been sleeping in a separate building.


Also, I realize that some dietary changes could decrease inflammation and I’ve started eating some foods associated with this knowledge.


Also, I wonder on occasion if my PLE is stress related. For the past 10 years or so, the dynamic between my wife, my step daughter and myself, has caused much stress.


My step daughter has been quite absent form the situation over the past 9 months or so… especially after becoming pregnant and moving out.


Additionally, I’ve added some protein to my diet… on a regular basis: namely fish. I bake it, and try consuming fish at least 2 times/week.

Do you Like Chia Pets? The Seeds are High in Protein

I'm reposting this here from THIS WONDERFUL WEBSITE that you should check out.  There are all sotrs of questions answered there.  I'm posting this one question and answer because It might help folks with hypoproteinemia.
 Q: What do you think of chia seeds? — Elly, Port Orchard, Wa.



A: We think they do way more than grow a head of green hair on a guy made of clay. Chia seeds (Salvia hispanica) sprout “hair” and “fur” on Chia Pets, but on the healthy-food front, they’re a nutritional powerhouse.


Originally, chia was the only foodstuff Aztec warriors carried into battle. Chia seeds are nearly as high in protein as quinoa and as high in omega-3s as flaxseed, but unlike flax, you don’t have to break open the seeds to get all their goodness.


This nutty-tasting food of the Aztecs can be stored for long periods and provides quick energy. It also keeps you regular, because chia is 50 percent to 60 percent fiber, as well as high in vitamin B, calcium and potassium. And there’s some evidence that chia reduces visceral fat, the nasty inner spare tire that can lead to diabetes and heart disease.


Sprinkle the seeds on salads or grind them and add to a whole-grain muffin recipe.
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My Comment:

After reading this I think I'll give them a try.  This is the kind of food my nutritionist would encourage me to eat.