Thursday, August 14, 2008

Here we go again

I'm still crying from my appointment this morning. A new specialist on my new insurance.

I think I hate 99% of these specialists. Maybe it is just Cushing's specialists that act like this? Each one of them thinks that they have the proper testing protocol and anything but what they do - exactly as they do it - doesn't count. So, all of my sky high results from the tests I did in April? In the trash.

I've been through this before. And to some extent I understand it. But I am very fragile right now, and I could do without the drama and starting from scratch.

Let me give you an example of what I am saying:

Dr. X in OopaLoopaVille believes that midnight serum blood draws are the "it" thing for diagnosis. But he also thinks that they have to be done with central line placed, an IV line threaded to your heart. He doesn't care how many highs test results you have from going to the ER for midnight blood draws, they don't count to him and those results go right into the trash. Now mind you, I'd have to drive to the hospital for them to draw my midnight blood labs - but out of the central line IV.

Dr. Y in Rainbow City thinks that this central line stuff is a bunch of hooey, and exposes immune-system-compromised people to infection and is just a bunch of crap. He wants to you to go to your local ER at midnight and get your blood drawn with a needle stick. He doesn't think that being stuck with a needle affects your cortisol levels to the extent that you would get a false positive.

NOW TODAY, the Dr. Z of Smitzville says all of the sky high lab results I worked so hard to get, from April, are crap. Throw them in the trash. He thinks that driving to the ER at night throws off your levels and that none of those results are worth the paper they are written on. He also thinks that you cannot take any hormones of any sort while you are testing, because it'll give you false positive results. So, to test with him I need to stop taking thyroid, DHEA, testosterone and estrogen - and I am already not taking the growth hormone. I have to be off all of those for ONE MONTH then he'll admit me to the hospital to run tests. No mention of whether it'll be a central IV line (to the heart), a regular IV line, or just regular blood draws.

Are we slicing some mighty fine hairs here? And does everyone on hormone replacement have some sort of pseudo-cushing's disease?

What I have found consistently over the years is that 99% of these specialists are SO FREAKING COMPETITIVE that they just rejoice at the chance to trash the others' methods.

I hate it, I hate it, I hate it.

Oh, and he DID NOT tell me that 2 pit surgeries were a mistake for me to have done. Has he ever had a three year headache and double vision??? Even if it didn't kill the source, I especially NEEDED that first surgery. The second surgery, well - the tumors showed right on the scan, all of the evidence was in, it seemed like the right thing to do to all parties involved. Mistake? Probably not. I've regained ACTH and have not lost any additional anterior hormones.

I'm so emotionally fragile when it comes to being tossed around and torn down over these minute differences in testing protocol. I broke down and cried like a baby.

I'M SICK. Dammit. Fix me.

I'm going to play along with the rules du jour. I'm marking the calendar for the 1 month free of hormones and we'll go from there.

Mark my words, not only did I have the tumors that have been removed from my pituitary - but my adrenals have their own issues. I've been showing symptoms of Cushing's Disease since the age of TWO. Who grows a pituitary tumor at TWO YEARS OLD, yet not grow to massive proportions by age 36?

I have a friend with two daughters having a form of Carney Complex/Cushing's Disease; it is called iMAD. Both had diseased adrenal glands with pigmentation. The older daughter also has a pituitary tumor. Her doctor is saying that the pituitary tumor doesn't mean anything.

On my side of the equation, I have symptoms of Primary Pigmented Nodular Adrenal Disease. But I had a pituitary tumor, so the PPNAD symptoms don't mean anything.

It's a crazy, freaky world let me tell you.

I am sooo tempted to bypass all of the "cover my ass so I won't get sued" CRAP I have to go through to prove again, and again, and again, and again that I HAVE CUSHING'S DISEASE. Do you think I could pay cash in India or Mexico to have my adrenals out? It'd be worth it at this point. I am so done with this guinea pig stuff.


What other disease in the world makes you go through SO MUCH for a cure? I can't think of one. Can you imagine if diabetes was diagnosed the same way?

"It only counts if you eat two apples, standing on your head, then test glucose levels with a finger stick of your left pinky finger."

"No, no, no! You need to not eat any apples for a month, then lay upside down with a fork in your neck and test glucose levels at 1:23pm global-adjusted time."

"Oh, you have it ALL WRONG. Eat thirty pounds of angel food cake, three diet cokes then go to the lab at 8am. They'll jab you with a 10 gauge needle in your RIGHT pinky finger. At a 20 degree angle."

Repeat the above over and over, until all of your toes fall off from gangrene and the new dialysis clinic can fit you in.


Mary said...

Lisa, I'm so sorry you are going through this again. You said it so well here! No other patients on earth have to go through the rigamarole all of us have to go through. I'm telling you, there ought to be a LAW that says doctors can't treat us like this.
I'm glad you got new insurance though, and hope you can get to treatment again really soon.

Robin said...

[...]Ask Lisa....she knows....[...]

(And I agree with Mary...)

Anonymous said...

Huge strength & god speed with the new testing lisa...Really hoping that you nail it quickly & get those adrenals in a jar..I hope some doctors read your blog, from another hanging upside down from too long on this cure journey, unless you've actually experienced it, it wouldn't be believed. We all deserve better .
LOL, Jo.

Kristin said...


I'm sorry to hear you're having such a difficult time. It just seems like a horrible waste of time for these doctors to keep discarding test after test. Damn doctors.
Where are you located? I've had an amazing experience with my endo and surgeon and would be happy to pass along their info. You know where to reach me :)
You're right - you deserve a doctor who is going to stick to their guns and do right by you. This is your life - not theirs.
Best Wishes

Christy Smith said...

So Sorry Babe

Christy Smith said...

So Sorry Babe

Christy Smith said...

Bleh didn't mean to sound like a broken record! Don't know what happened...feel free to delete.

Lady Blognanimous said...

I'm running into the same issues. I have to carry my pathology reports from the tumor in my purse these days.

Stoneflipper said...

I have not laughed so hard in such a long time!!! I laughed for nearly 5 minutes straight after reading the last 6 paragraphs from your August 12 blog post. My almost-19-year-old son came to my room and asked what the heck was wrong with me! I was not quiet in my LOLing!!

I have recently gone through 4 months of testing and compounding and worsening symptoms to FINALLY find out that I have a tumor in my left adrenal gland. I couldn't believe the things they wanted me to do along my journey of diagnosis! MANY, MANY blood tests for all kinds of things, including having 2 blood draws in one day exactly 8 hours apart, 24 hour urine collection (my son just LOVED that one! NOT!), cortisol suppression testing which involved taking 2 pills at exactly 11 pm and having blood drawn at exactly 8 am the next morning, thyroid testing, including a radioactive thyroid scan, and most recently an MRI of my abdomen, with weighted importance on my adrenal glands... of course this included many doctor office visits for which I owe lots of co-pays! and now, YAY, FINALLY A DEFINITIVE DIAGNOSIS!!! Non-ACTH dependent, hypercortisolism due to overproduction of cortisol by the adenoma in my left adrenal=CUSHINGS SYNDROME!

I want you to know that I was NOT laughing AT you... I was completely sympathizing!!!! And I think I am a little emotionally labile... one of the wonderful symptoms of Cushings... argh!!

Well, this is Susan (aka: Stoneflipper) from St. Louis, Missouri and I would love to find a reputable surgeon VERY SOON to consult with about my impending (and MUCH needed, yet dreaded) adrenalectomy, as I don't know anything about the doc to whom I was referred. If anyone knows of someone, please please let me know!!! email to:

THANKS!!! And, Lisa, GOOD LUCK!!! I will keep you in my prayers!!!!!!! We could all use that!

I think I should start a blog of my own... thanks for blogging, Lisa... this may be my much needed outlet for all MY frustration as well!! Look for a blog from me soon... within a couple of weeks... I just need to feel good for a nice length of time to be able to sit down and put my thoughts in order...

Robin said...

Susan aka stoneflipper, have you visited the cushings-help message boards? THey have a lot of information to share. Good luck with everything.