Cortisol levels and Pituitary Tumor

[chochmeh]

Hi,
i was brought into the hospital last fall because i thought i had a stroke...the symptoms were no muscle control, fascics and severe muscle cramping along with anxiety and fainting...i basically felt my legs go weak and fell down a flight of stairs, blacked out a couple of time...i thought i was dying...i had very low BP(84/48), dehydrated and low heart rates(48) all through hospital stay...i had my heart checked out which is OK...i don't have MS or Lupus...i eat a lot of salt and wear compression socks to keep the BP up.  i am on cymbalta for the cramping pain.
when i got to the hospital, they ran some MRI's and discovered a pituitary tumor...they ran hormone tests and everything was fine exept i had a very low cortisol level and higher than average prolactin...
they ran a stim test and i reacted fine to it...the pituitary tumor was designated as non-functioning and i was sent home...i am still having these symptoms...i have been fatigued and have had sore muscles since last year...before i ended up in the ER, my family doctor and i were slowly trying to uncover why i was fatigued. the only thing discovered was 'leukapenia'...she had no idea about pituitary adenoma...but, she sent me to a neurologist to find out about the muscle symptoms...
i had an EMG/NCV done and i was told i had left leg atrophy with peripheral neuropathy
i also saw a neurosurgeon who said that since my tumor was embedded in the pituitary and it was .9 cm...it was best to leave it alone with follow up to check growth, function...
i thought i was doing better with the twitching, cramping, but then i got a viral infection and everything went downhill for me.  i followed up with endo doctor who won't do another hormone panel for 6 mos...and although she found thyroid nodules, she diagnosed them as non cancerous and will watch them along with pituitary.  i asked how could she know my cortisol won't drop again and cause me to flop like a fish on the floor?  she said, "trust me...your adrenal function is fine..."

my questions are these"
1.  could the cramping, twitching and muscle weakness be from low cortisol levels? (my neuro says i don't have ALS, but can't figure out the cause of these symptoms)
2. can ACTH production be inconsistant? and if so, how can it be fixed or found out?
3. is there any tests for this?
4. should i ask for another stim test or should i just go along with the program?(i need to get back to work and life and i am sleeping 12-14 hours a day)
5. i began having foamy urine, but no protein loss according to doctors...this started at the same time everything else did...could this be from cortisol dumped out of my body?
6. should i go get second endo opinion?  
thank you.
C
2.  

[chochmeh]

HI,
i wanted to go take a nap again, but instead raided my medicine box and experimented with some natural DHEA my naturopath (75 mg) had given me along with adrenal gland extract from Wild Oats and i feel SOOOO much better....i can't wait to talk to endo and neuro about this...tommorow, i am going to buy some hydrocortizone cream and see if i get the same effects...my legs feel stronger and not shaking...i can go down stairs without trembling and feeling like i am going to fall down them...i still have foot drop, but i don't care, i feel strong... i will see if twitching lessens....if it does, i might have a solution to my problems!!! i don't feel tired!!! i have energy!!!

[ifupleze]

It might take awhile to get into an endo, so if our obgyn can do it sooner, it might be helpful, but I would make an appt. with an endo in the meantime.  Good luck.

[chochmeh]

THHANK YOU...i had no idea it was suppose to be tested that often...i know my DHEA levels are chronically low

my last thyroid panels were:
TSH 3.08

last cortisol check was .02

....maybe i will ask the neuro if he knows someone...he's pretty smart...he's been checking my cortisol for me!!!!

i know my B12 levels were high=1342...taking vit D and B's like no tommorow....thank you...i have all my records except the EMG...

i could have my OBGYN run another panel for me too as i will see her next week and might be faster than getting another endo???
The endos i have are suppose to be pretty good...

[ifupleze]

Get another opinion from another endo.  You should be having your blood tested along with the cortisol levels every 4-6 weeks.  Have you been tested for thyroid disorder?  Did they test your DHEA levels as well as cortisol?  These things should be addressed.  Also, Vit D, B12 and metabolic panel.   It never hurts to get a second opinion.  Just be sure to have all your records in hand from your current doctor and any other doctors you have consulted.