second MRI this year

[sickandtired456]

After ditching my local endo-dud, I found an neuro-endo at a teaching hospital in LA. I've been seeing him for 8 months. My blood work has changed since finding a 3mm tumor in Jan 2014. My iron stores are low, but not anemia. My z score has gone from -0.4 to -1.8 and my IGF-1 from 153 to 58. Dr says it pluses so now I must do a glycogen stimulation test for a true score? Cortisol is high at night, normal in the day- with occasional adrenalin bursts that freak me out. 24 hour urine was normal except I peed 800 mg over normal for fluid amount. I had a repeat MRI last week and tumor is now 4mm x 9mm- eight months later (6 months of it on Cabergoline). Endo has referred me to a surgeon. Neuro-endo still hasn't told me what he thinks is going on. I try to look stuff up on the internet, but its confusing.I feel extreme fatigue. I used to be so active, running 10 miles, cross fit, spin class. Now I have a hard time getting up in the morning. Also gained 50 pounds since a year and half, mostly all in stomach

Side note* Endo sent me to a neurologist for my headaches turned out to by occipital neuralgia. Went through several meds to fix that and ended up taking a prescription sleeping pill and it completely cleared up. I think the insomnia  was behind it all. Still have phantom tingles on left side of head and an awareness of pressure on that side, but not painful.

Will my IGF-1 and z score get better after surgery? Will my pituitary regain the ability improve the z score and growth hormone?

[rumpled]

The test does not hurt much more than one IV line and a shot in the butt. but I did get very nauseous.

It took about 4 hours. Baseline, and then every 15 for the first few then 30 until done. I don't have my results (although they are done I did not get a copy yet).

They did a cortisol stim at the same time.

I have had 13 surgeries now... the pit one was easy! It can depend a lot of surgeons. I had one who did not pack the nose. I felt great after my surgery I just had my tumor grow back (damn FRED...). I am crud with hormones as I have had so much other stuff removed. So yeah, GH may be an issue but it is more an issue just to get it now - insurance is increasingly not allowing it. I would ask. I am just fighting so hard.

[sickandtired456]

Rumpled,
Can you tell me more about this Stim Test? Does it hurt or freak you out during the test?

Apparently, the Cabergoline didn't work as its grown 6mm since Jan. It lowered my prolactin levels, but didn't stop adenoma from growing. I've never really thought about surgery as Dr. kept saying its controllable with meds. Now I'm so scared :(

I've got two weeks before surgery consult and I feel so freaked out...

[rumpled]

Glad to hear you have moved on... to a better doc!

I don't know about z-scores! So I am clueless on that one.

As for IGF-1, that is true. So you have to have a stim test, and that is why insurance makes you have a stim test to qualify for the medication. They are making me repeat the stim test (joy!) as they said I did not pass, but they decided that my test which was fine for that stim agent (which is no longer used) is not valid as they want to use the range for a stim agent used today, which makes no sense to me.

If you have elevated cortisol at night, that can contribute to insomnia. So that can be resolved with treatment of that issue.

A lot of us too have low iron (I did, and a lot of my buddies) and had to take supplements. I found they all had a lot of side effects so I tried to adjust my diet... so it was a rough go.

Sadly, after pituitary surgery, GH is usually, but not always, lost from trauma to the pituitary. So you may regain it for a while, but then lose it again after time. Thyroid is often lost as well. It all changes over time. The iron did resolve in most if not all of us... most of us don't talk about iron now post op. Fatigue is a huge factor. It does get better but never completely goes, as replacements are not quite like the real thing. It can vary - some people are quite active.