the more things stay the same, the more i want them to change

How do I hate thee? Let me count the ways...

How do I hate thee? Let me count the ways...

I have had a problem with doctors for my entire adult life. Being talked down to is not a way to gain a fan, neither is cutting me off in the middle of my list of symptoms to focus on one thing and dismiss everything else. Test after inconclusive test. Shrugging and scratching heads. Passing me on to others with no follow up. Putting me through tests with no follow up. Telling me to "wait and see."

I have been in the "wait and see" holding pattern for 15 years. So nope, not a fan.

Actually, I'm not really a fan of anyone or anything health related. The wretched "green medicine" when I was about 8 or 9 because anxiety was making me puke all the time. The increased number of pills I have to take on a daily basis that has in fact made my gag reflex WORSE - I used to be able to swallow up to 4 pills at a time. Now I'm lucky if medium-sized pills taken one at a time go down the first time. There are hospitals with their smells and their bad memories and the constant cold. There are office waiting rooms, followed by the waiting room 2.0 that is formally known as the exam room. Dentists have been failing to properly numb me since elementary school, or stab me in a nerve for the most painful 2 seconds of my life - so traumatic that I now need to take valium to see a dentist for any reason, or have needles used on me.

Lab Technicians can be really awesome actually. There was this really cute one at Group Health that I would fantasize about while she took my blood. Quite an experience when I almost passed out and she laid me onto the floor, her face hovering over mine like an angel. My favorite lab tech at Virginia Mason is a flaming gay and a real hoot - and has been known to actually NOT hurt me when drawing blood (gasp!).

Finally, we come to nurses - the true angels of the medical profession. Nurses listen. They do not run all over you trying to diagnose in 3 seconds what no one else has been able to diagnose for years. They take the time to study your chart before and after your visit, do research, and call unexpectedly with new information.

My current gynecologist put me on Clomid for 2 months, and said she didn't know how to help me after that so I should see a fertility specialist. But when I went in for a post-Clomid check up that was supposed to last 10 minutes, I was there for an hour because the nurse took 20 minutes looking over my chart before coming in and then she spent 30 minutes talking and listening and examining. That is a world record, I'm sure.

The nurse pointed out that there are notes from my gyno that she thinks I have PCOS (poly-cystic ovary syndrome), something she never relayed to me!

She went on to explain how PCOS can mess with your hormones, which can mess with your blood pressure, cholesterol, fertility and menstruation, weight, body hair, moods, etc. So she gave me an anti-diabetic drug to help make my blood sugars and insulin work correctly, which she believes can help a lot more than just my fertility problem.

And she put me on extended Clomid - 7 day cycle instead of the standard 5.

And she sent me to get a blood test to see where in my cycle I was, and/or if I was pregnant, because at day 37 I was around 10 days late.

And then she called me yesterday to tell me that the blood test showed that I should start my period any day now (or, as it was, the day before her call).

And to tell me that she had spent the past 2 days going over my charts and testing history, then doing research. She believes there is a gap in the testing - an area that no one else has thought to check: my cortisol levels.

She thinks that I may have Cushing's syndrome, which would explain a lot. She sounded optimistic, that this could be a good thing, that I could cut out all my medications and be put on just one. Holy crap! All I have to do is collect my urine for 24 hours. How... very much un-fun. But as tests go, really damned easy!

So I was happy. Let the pee collecting begin!

Then I started looking into Cushing's. At first I was merely astonished at how the symptoms pretty much described me perfectly. Things I never even thought to mention could actually be symptoms!

And then this morning I decided to continue to do research. And now I'm terrified. Here's what I found, in the order I found it:

1. http://care.diabetesjournals.org/content/26/6/1819/F1.expansion
Looks like me in 20 years

2.http://img.medscape.com/pi/emed/ckb/endocrinology/116364-138556-117365-138806.jpg
I have 8 out of 10 symptoms

3. http://friendsofbecky.com/pictures.aspx
Wow, Cushing's develops fast! Wait... why is this girl on chemotherapy?

4. http://friendsofbecky.com/default.aspx
Becky died from cancer, Adrenocortical carcinoma

5. https://health.google.com/health/ref/Adrenocortical+carcinoma
Adrenocortical carcinoma has many of the same symptoms as Cushing's, is linked to cortisol over production (like Cushing's), and I should call my doctor if I have symptoms of Cushing's.

6.http://7thspace.com/headlines/332095/adrenocortical_carcinoma_secreting_cortisol_androgens_and_aldosterone_a_case_report.html
And I quote: "Adrenocortical carcinoma is a rare malignancy with a poor prognosis"

7. https://health.google.com/health/ref/Cushing+syndrome
if symptoms are caused by a pituitary tumor, treatment is surgery to remove the tumor, followed by radiation

4 comments:

judycolby said...

http://www.cushings-help.com/intro.htm
Check out the above link, especially the message boards.
Hopefully your doctor knows that just one test can't rule Cushing's in/out. Many Cushies cycle and have a hard time catching a high. If you cycle fast a 24 hr. urine can even itsself out.
Hope you get to the bottom of this.

judycolby said...

Forgot to say that cortisol is also usually tested in saliva (11 p.m.) and serum (midnight). Midnight is a good time to test serum because a normal person should have about 0 cortisol. Someone with Cushing's will quite often have high results.

Anonymous said...

If you do have Cushing Syndrome, are you able to get pregnant while getting treatment for Cushing Syndrome?

Anonymous said...

While it all sounds really scary, I am glad that you have found someone that might actually be able to help you. I recognize several of these symptoms in myself and wanted to say thanks for posting all the links. Much love to you, my dear sweet friend. ~K

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