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Confusing Doctors

This year, FINALLY, I had a few months appointment free over the summer.  I took the summer off because constantly using days off for appointments and trying to figure out what's going on inside my body is exhausting.  It takes up my mind every free moment.  It's just hard to do for 9 years without a break.

This fall, things were kind of quiet.  A few appointments here and there, but mostly good things were happening, weight loss, researching growth hormone replacement (more on that later), and trying to improve quality of life, instead of fixing problems.

That changed big time this winter.  I started having this dull, intermittent abdominal pain.  I was falling asleep every afternoon, even after sleeping 10 hours each night.  Something just felt off.  

Then, I turned yellow.  I noticed it a month or two ago, but no one else seemed to notice.  I mentioned it to a few people, and then one of my coworkers mentioned that the whites of my eyes were yellow.  I saw a nurse practitioner at my PCP's office, who seemed more concerned than I expected.  She looked at the size of my belly (bigger than usual), and the color of my skin and eyes.  Definitely jaundiced, and definitely swollen.  Labs were done, and of course, my liver function tests were high, and my bilirubin was high.  

I saw my endocrinologist a few days later, but the yellowness seemed to disappear.  I didn't think much of it but still had the achey abdominal pain.  I think at this point these doctors are a little afraid to find another thing, I mean, I made me favorite one cry when talking about the saga at Harvard Medical School.  

At my endocrine appointment last week, I mentioned it again.  She examined me closely, then got on the phone.  What if I was hemolyzing?  (BTW - hemolysis is the break down of red blood cells)  After a bunch of questions (most of the answers were a strong YES!), off to the lab I went.  Some tests did show hemolysis (low haptogloblin), and some didn't, (normal RBC).  And some were just off (lymphocytes, neutrophils).  No active infections or explanation for the unexpected.  The most worrying thing about all of this is that usually hemolysis is caused by something else. It doesn't usually happen by itself for no reason.

Off to hematology I go.

I hope you are all having a wonderful week, more later!


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