Also, I went through all my bloodwork with a fine tooth comb (still going to go back & recheck & make up a history/timeline), but she totally missed that my "IGF Binding Protein 1" was low. Level was 9.6 - Range is 13-73.
I looked it up & IGF is stimulated by growth hormone. Growth hormone sustains blood sugar during fasting. I remember reading that growth hormone is the first to go. So it's obvious to me this is pituitary insufficiency....even though she can't possibly believe because it's not compressing the pituitary according to the MRI ***sigh***
Well, I think you should do the testing, at least some of it - even though it *****. I have had docs do salivary tests straight through but not urine - yikes. Your fridge is going to be full full full. I had a CRH stim test, flatlined it - for cyclicals, it is an iffy test. I still had Cushing's for sure, but that gold standard (supposedly) test sure does not work for us all...
The endo may not think your pit is being compressed but er, anything up in that small space is putting pressure on your pituitary. The surgeons are usually much more in tune with that. Why some endos are so thick on that point, no idea.
My adrenal scans came back totally normal before surgery - pathology showed they were at least 2x the size of normal and one was nodular - and a post -op CT report noted that my adrenals were... normal! Ah, imaging... I have a distinct lack of trust for some odd reason... hmmmm...
There just is no one test.
Usually GH goes after surgery or trauma. If your tumor is pressing on something, it could be effected - or the cortisol could be doing it - high cortisol suppresses IGF-1 so having low IGF-1 with abnormal cortisol readings is pretty standard. Usually they will not treat the GH until the cortisol issues have been treated. My surgeon explained that you can have secreting tumors or you can have a tumor or just tissue pressing on the pituitary that secretes the hormone - either way, removing it can relieve the pressure and thus the problem so having normal pathology is fine, what is looked for is a relief of symptoms.
Just to tell you what I am going through to let you know there is a great relationship - that most docs seem to ignore (or be ignorant of), I had to raise my estrogen, in return, my IGF-1 and my thryoid both dropped so I have to then increase both. After my hysterectomy, my IGF-1 went super high. It was really weird. So as I change meds (I have to adjust all mine manually thanks to the removal of everything...haha), I have to adjust all my other meds. Thankfully, I have a doc who watches and adjusts them all. Still it is a PITA.
About the estrogen - so I guess there is a feedback loop on that & IGF/thyroid. I noticed my estrogen was higher (60) when the low IGF came in. And the month prior it was 16 (same menstrual cycle day of the month). So estrogen is apparently up & down for me too.
How cyclical can cushings be? Day to day, month to month, months at a time & then remission? I can see even a 14 day urine or 24 hr saliva wouldn't catch it if the cycles are far in between.
Can I ask, what's your opinion on what my endoc. said about larger tumor being easier surgery??
Oh, and I had the CT scan done. That was worse than the MRI (that damn Iodine injection & drinking the contrast really made feel God awful). I'm really not up for 14 day urines though & like you said, it could all be moot & not catch it. I'm going to see what Dr. P. says. I'm sure he'll do his own tests if he decides to "take on my case".
Thanks Rumpled! You've been a huge lifesaver throughout this for me!
Well, at least your endo did not say size matters as far as testing goes. Larger tumors are only easier to a point - once they get to a certain size, they get too difficult to remove as they are too close to the carotids and the optic nerve. I don't know actually if the surgeons would agree with her statement since they have to remove more of the pituitary. Sure, you can see it but er, the risks are greater.
Ah the adrenal scan. I had on tech want to take a picture of my face when I took a sip of the lovely and delicious (*gag*) contrast. I was with a woman who had lost her sense of taste due to a brain tumor and even she disliked it so we laughed.
I have had long and short cycles. I had a co-worker that used to send me up to the nurse as he watched my face redden suddenly for no reason during the day (I was just sitting there, doing e-mails or paperwork, writing policies etc.). as it looked like my blood pressure spiked. It was low. It was baffling but later it all made sense.
I found out later that I probably cycled overnight. Sleep studies (failed) showed I did not reach deep sleep and later, 10 hour UFCs showed very high levels. But I was so low and tired during the day, the average on the 24 hour UFC was normal. Ugh. Only late night testing really hit it for me - but it takes testing to figure it all out.
You could hit it on the 24 hour UFCs - my doc used to make us do 2-3 in a row whenever you felt good. I did get a few. Feeling good is when your cortisol is high. I have had friends carry soft coolers and zip lock bags - whatever it takes - to do the UFCs to catch the cycles. I did tons and tons of saliva tests too. Even now, I have to do UFCs. Not my fav.
Actually, the taste of the contrast didn't bother me! It was after drinking it the day before the test, I woke up in the middle of the night with my heart pounding out of my chest. And then a total feeling of disconnect & feeling like **** the next day. I had bags under my eyes too the following day, and every day since. I think it was tough on my kidneys.
My face doesn't turn red, but my ears can suddenly turn bright red & burn like heck. Then an hour or so later, it goes away. Same with the palms of my hands.
So I guess some of the pituitary is lost no matter the size? Ugh...