Questions about Cortisol Levels

[takemydog]

Just a bit of back story in case:

While I have been suffering from *some* type of Endocrine dysfunction for almost 4 years now, I am FINALLY getting my Doctors to listen.  Of course this is after suffering symptoms that were almost to much to bare.  It started out by gaining 96 pounds in one year and even on a calorie restricted diet of 1200 calories a day, I cannot lose the weight.  I am a VERY thin person, so much so that up until that point, I could not keep weight on.  The odd part has always been that it is all in my breasts and abdomen.  My feet have grown a size and a half depending on the shoe, but other than that, just my face has changed so dramatically.

As many of you can no doubt ascertain, I suspect Cushing's.  I went back to my Endo after 2 years of my life completely changed how and who I am.  My hair is falling out so bad people ask if I have cancer.  My belly sticks out so much that EVERY day, I am asked when my baby is due.  Honestly, I don't blame them; I do look pregnant, so much so that a Doctor didn't believe me.  If those things aren't enough, I am now considered menopausal, not 'pre' due to the fact that my periods stopped 3 years ago, and never returned.  I don't feel like a woman anymore at all!  I had depression before, but I am so deep in it this time, that I cannot work, and my marriage is falling apart.  Hot flashes?  No, they are Hot all day, with waves of more heat, constantly sweating, primarily on my face.  I get so hot, it feels like I am going to faint.  I can feel myself going down.  I don't lose consciousness, but I get to week to even get off the floor.  

I live in Canada so while the free health care sounds fun, it ***** so much I would rather pay.  With a laundry list of symptoms, including a diagnosis of Hypothyroidism, my Endo wouldn't do much, because the stupid lab values weren't "bad enough".  I have been so sick the last few months, to the point I cannot walk long or far, can't play with my son, can't do anything.. I just lay on the couch all day, sweating and feeling like I have the worst flu ever.

Now my question, sorry it took so long to get to this point:

I had a 24 hour urine for Cortisol.  The lab value came back at 562, and according to what i can find, the healthy level is between 10-100.  I can't find out how high is too high?  Also, if anyone has thoughts on what could be wrong, or am I right in considering the Pituitary Tumor.  The symptoms read like my chart. I am doing 2 more 24 Hour Urine test, one week apart.  I guess that means with lab time, I won't know anything till after Christmas.  Honestly?  I don't feel I am going to make it.  I am just a mess.

Thanks in advance.

[rumpled]

Whatever the source, you have to find it - and the surgeries differ - frankly the pit one is a lot easier - had both my pit done and my adrenals out since my pit tumor came back fast and that was seen as my best option. Tests are the same. Pee, saliva, blood, and time. Blah.

ACTH is easily bunged in the lab - renin is the same - they degrade once drawn in minutes. A good lab will have chilled tubes, put it in the centrifuge immediately and freeze it once it is out. If the tech dumps the tubes in the rack, you are done for - the tests will be low.

You need all your hormones checked - cortisol effects everything from testosterone to growth hormone to thyroid -but if you have other diseases (I did as well) that will override the cortisol and your results will be all over the place.

Nausea is strange though - that is usually low cortisol...

[takemydog]

Thanks for the advice.  They are doing 3 - 24 hour urine (cortisol) tests.  I have done two now.  The second cortisol level was 742.  I am going to call to find out my ACTH level.  The Endo did a lot of blood work.  Is there any other test I should request the results on?  I still have another week before my I see the Endo again.  I feel terrible!  Headaches that were always consistent, now feels like my eyes are being pushed out.  I have NO energy, I am nauseated all the time, and my hair is falling out so fast!  I haven't washed it in a week because every time I do, I end up losing more.

Say it is Pituitary?  What would the next step be?  If it is adrenal?

[rumpled]

That is pretty high - but now you need ACTH tests too to figure out if the source is pituitary or adrenal. Even that is art as my Acth was normal which ordinarily points to an adrenal source yet mine was pituitary, so it does help to have an expert.

You may also have a concurrent issue with IGF-1 since your feet have grown so do not overlook that hormone either. Plus cortisol messes with everything. I had Cushing's too.

Don't let them do a dex test and say you do not have it.