Skip to main content

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!


Comments

Post a Comment

Popular posts from this blog

Plastic Surgery

When I was 17, I thought about getting a breast reduction.  I was still pretty thin at this point and it bothered me to by bigger clothes just to fit my bust.  I had a hard time exercising and always had back pain and grooves in my shoulders where my bra straps sat. I had a few consults with different plastic surgeons and ended up scheduling surgery for the week before my high school graduation.  I ended up "chickening out" because I didn't want the surgery to have any impact on my graduation, and I hadn't had any major surgeries before.  I started gaining weight due to Cushing's shortly after, so it worked out for the best in the end.

Now, my breast size has gone way down since I've lost weight, and even though they are still bigger than average, they don't get in my way as much and are more proportional to my body. These days, my plastic surgery dream is to have a tummy tuck.  I have a lot of excess skin on my body, especially on my belly, and in a drea…

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

The Challenges of Getting a Diagnosis

I have been asked about this so many times, and talk about it a lot, whenever someone asks me about Cushing's.  So many people have the same experience - KNOWING you have Cushing's, and seeing 5, 10, 20, or more doctors over the course of many years before you officially have a diagnosis.  I would say this is one of the most common links I have with other "Cushies".  We all fought for a diagnosis, heard we were just fat and depressed, waited with hope after every test, until a day came when one test came back high, or a brain MRI showed a tumor in the pituitary gland.

I think the reason I haven't written about it is because it's one of the hardest things to sit down and spend time on.  It's painful, and of course, I can't help but wonder what my life might be like today if I was diagnosed sooner.  Would I have needed an adrenalectomy?  Or for that matter, a second pituitary surgery? Would I have as many health issues after Cushing's?  It's ha…