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Rumpled - some questions from followup with endoc
Hi,
I had my first face to face with my endoc. since the pit tumor diagnosis.
She's totally confusing me, so I was hoping to get your input:
My cortisol was low 2x out of 3. The last morning cortisol was 16.
My E2 & DHEA seem to go up and down (so does my FSH, but that could be age, but sometimes it seems to be a little too low for my age - i.e. 5)
She's suspicious that the cortisol might not be a pituitary thing, but an adrenal thing (because of the DHEA). So she's having me do a CT of my adrenals/pancreas.
She told me (and I don't actually believe this) that large tumors are easier to get out than small ones. And they don't normally do surgery for non-functional tumors. She made it sound as if surgery of small tumors carry the high risk of loss of pit function like I've read about large tumors. That Dr. Post will probably tell me that he only operates on functional tumors.
I mentioned to her about cyclical cushings - because I could fit into that category. She said it's a possiblity, which is counter to it being an adrenal problem. She said dx involves either the stim test (which she said I'd have to go off HC first?) or 14 days of straight 24 hr. urine tests. Not gonna do that.
She also wanted me to taper down by 10mg on the HC - isn't it suppose to be 2.5-5 mg per week? I've been on steroids for 10 days now.
I still fully plan on keeping my appt. with Dr. Post.
Thanks for your help!
I had my first face to face with my endoc. since the pit tumor diagnosis.
She's totally confusing me, so I was hoping to get your input:
My cortisol was low 2x out of 3. The last morning cortisol was 16.
My E2 & DHEA seem to go up and down (so does my FSH, but that could be age, but sometimes it seems to be a little too low for my age - i.e. 5)
She's suspicious that the cortisol might not be a pituitary thing, but an adrenal thing (because of the DHEA). So she's having me do a CT of my adrenals/pancreas.
She told me (and I don't actually believe this) that large tumors are easier to get out than small ones. And they don't normally do surgery for non-functional tumors. She made it sound as if surgery of small tumors carry the high risk of loss of pit function like I've read about large tumors. That Dr. Post will probably tell me that he only operates on functional tumors.
I mentioned to her about cyclical cushings - because I could fit into that category. She said it's a possiblity, which is counter to it being an adrenal problem. She said dx involves either the stim test (which she said I'd have to go off HC first?) or 14 days of straight 24 hr. urine tests. Not gonna do that.
She also wanted me to taper down by 10mg on the HC - isn't it suppose to be 2.5-5 mg per week? I've been on steroids for 10 days now.
I still fully plan on keeping my appt. with Dr. Post.
Thanks for your help!
You want the most experienced surgeon - and one who has done many of your type of tumor. They differ.
Most surgical outcomes ARE good. Hormonal is another story - whether or not that is the surgery is debatable as the tumors are persistent little suckers.
Most surgical outcomes ARE good. Hormonal is another story - whether or not that is the surgery is debatable as the tumors are persistent little suckers.
That poor boy. I heard you mention that in another thread.
But a high volume surgeon would remove as little as possible, no? I keep hearing positive stories of surgeries - many of them macroadenomas. Guess I need to take my rose colored glass off. Why couldn't this be easier? Wish they could just laser the blasted things out...*sigh*
But a high volume surgeon would remove as little as possible, no? I keep hearing positive stories of surgeries - many of them macroadenomas. Guess I need to take my rose colored glass off. Why couldn't this be easier? Wish they could just laser the blasted things out...*sigh*
Some surgeons are more aggressive than others. Some will just take 1/2 the pit to be sure (not sure I really like that), most will take the tumor they see and a bit more. One I my friends just has like the core of an apple looking thing left when you look at her MRI! I know I one lady I know who got a *free* surgery for her son, the surgeon had not done any pituitary surgeries and that doc simply removed the pituitary... which of course was catastrophic and rendered the child panhypopit at 11. Sure, the surgery did not cost her anything but it will cost a lot all his life. But she would not listen about getting someone experienced - she just wanted someone close and cheap.
I had dark circles under my eyes a lot too. Weird about the red ears and hands. At least it is not your neck LOL.
I had dark circles under my eyes a lot too. Weird about the red ears and hands. At least it is not your neck LOL.
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...
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...
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.
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.
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!
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, 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.
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.
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***
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***
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