Skip to main content

Cushing's Awareness Challenge - Day 8

Today is Harvey Cushing's Birthday - which means today is Cushing's Awareness Day! Harvey Cushing is one of the fathers of modern neurosurgery.  He studied brain tumors extensively.  You can read more about him here.

So, let's talk more about Cushing's.

Over the next few days, I will be writing about the different elements of Cushing's, like medications, surgeries, diagnosis, testing, and what to expect once you are treated.

Today, we are going to talk about diagnosis and testing.

For most patients, testing will include midnight salivary cortisol, 24 hour urine free cortisol, MRI, and for patients with a suspected pituitary source, inferior petrosal sinus sampling, otherwise known as IPSS.

For me, I only tested "high" on 24 hour urine free cortisol tests, which are exactly what it sounds like.  You pee into a jar for 24 hrs, then the lab measures the amount or cortisol excreted over that period of time.  I always liked to do these on days where I could mostly stay at home, because who likes to carry a big orange jug everywhere?

Most people have the best luck with midnight salivary cortisol tests.  Again, just like it sounds.  You chew/suck on a cotton thing at midnight or close to it, until it is fully saturated, then mail it to a specialty lab.  The reason why they have you do it at midnight is most people's cortisol level would be 0 or close to it.  Cushing's patients will likely have high cortisol at that time.

I did have dexamethasone suppression tests, but these are being used less and less, and in a different purpose, so I'm not going to talk about those today.

I had an MRI ordered by my gynecologist, which showed a pituitary adenoma. At that point, I already suspected I had Cushing's, so this was a game changer for me. I was able to go to MGH after those MRI results.  For me, MRIs are not too bad, but unpleasant.  I always suggest taking Benadryl beforehand if there will be someone to drive you home.  It helps me relax, and being a little sleepy doesn't hurt either.  I try to keep my eyes closed from the second they strap my head in.  Most MRI machines will have mirrors so you can see outside of the machine, but I find this just disorients me, and dizziness on top of claustrophobia is not fun.

Sometimes they will let you listen to music, so always ask! I always tell the person doing the test that I want count downs, so in between each sequence they will tell me how long the next one will be, and how long until we are done.  It helps me to think, okay only 30 more minutes, I can do this.

I had an IPSS almost immediately following my diagnosis.  I would say the IPSS was "worse" than my actual pituitary surgery, but maybe it was only because I had this first.  I just remember it as a super stressful day. I was very nervous that the UFC I had to do the day before wouldn't be high, which meant I couldn't have the IPSS.  Then I was worried about the actual test, and what would happen if it didn't confirm a pituitary source.

The prep and recovery was worse than the actual procedure.  I was laying practically naked on a table while they got ready to insert a catheter into my femoral vein.  I didn't feel that, but I do remember feeling the catheter as they tried to get it past my jugular vein.  They were having me tilt my head, and were moving me around.  I was sedated a little bit for this but was still awake.  There was a stretcher next to me just for blood samples, which they took every few minutes from multiple places. (I don't remember exactly, but I think from both arms, maybe from my jugular vein, and from the petrosal sinus).  I remember being so hot and nauseated as they withdrew the catheter, and it didn't help that someone was putting their whole body weight on the incision site to help it clot.  I had to lay flat for 2 hours afterward, and that was probably the worst part.  Luckily, this test turned out to be obviously positive for a right sided pituitary source of ACTH, which was where my tumor was, so I had surgery about a week later. More on that tomorrow.



What was the easiest and hardest part of testing for you?





Comments

Popular posts from this blog

Talk About the Sh*t you Don't Want to Talk About

I haven't updated this blog in a very long time.  I actually deleted a ton of posts while I was applying for social security disability. I posted about Cushing's Awareness day earlier this week on facebook, so I guess I'm in a sharing mood. Anyway, for anyone who even reads this, I was watching a documentary on Netflix about a teenager with anorexia and mental illness who found meaning in her life through yoga. (It's called I Am Maris). It's kind of the reason for this post. To start - let's go back to June 2018. My grandmother died.  She lived a wonderful long life, but it was especially hard on me.  She was the reason I got out of bed every day, my best friend, and so much more. I actually don't remember how I got through most of the summer. In the span of two weeks at the end of August, my mom turned 60, we went on a family vacation to the vineyard, my best friend got married, and I wanted to kill myself.  Yeah, you read that right. The day after re

Yet another health update...

As many of you know, things haven't been that great with my health lately.  I just had an appointment with my endocrinologist at MGH that was very informative, although not very exciting.  My ACTH levels have increased dramatically since a few months ago.  This is to be expected after a BLA and since I likely have tumor tissue left in my pituitary gland, this wasn't too surprising.  She seemed a little concerned about this recent increase and took a look at my MRI from July.  I hadn't actually seen the images, I just read the radiologist's report that said everything looked normal considering the 2 surgeries.  She thought my pituitary stalk looked pretty enlarged (the stalk comes up vertically from the gland and connects it to the hypothalamus).  This could be because I have tumor growth, which would make sense because of the increased ACTH.  She is going to have my neurosurgeon look at the MRI to see what he thinks, at the very least this increases my MRI intervals to

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