another MRI scheduled

[SarahB79]

Well I saw my normal endocrinologist the other day.  She applauded me for seeking out other dr's in the field and said it is very helpful to her to have outside opinions to help her with me, especially having so many endocrin things going on... sometimes she'll focus on one and lose site of another.

I have been off dostinex for 6 weeks and she retested my prolactin... test hasn't come back yet.  
She ordered:
dex suppression cortisol
24 hour urine cortisol
saliva corisol

She asked me to find a MRI location with a 3.0T MRI machine this time for better ability to see the tumor.  So I found one of those and made an appointment.  

Also she recommended that I see my primary asap and find out if I should have a consult with hemmatologist or oncologist because of repeated tests with each time increasing WBC and neutrophils.  

I'll update you soon... Thanks everyone!

[SarahB79]

She said if ANY of the cortisol tests look abnormal to her she may refer me to another endo with more adrenal experience so she doesn't make a mistake.  She said she wants me to have the best care and feel better.  WOW.  Is she human?

I wonder if I should ask her about ACTH stimulation too before we stop testing if these come back normal???

[rumpled]

I was never very high with my prolactin, and I still had a tumor that tested positive for it.

The dex test is not perfect. I failed them all and still had Cushing's. I hope your doctor is not one to dismiss all Cushing's testing based on that test as some are (most are).

Thanks for the wishes. I hope it all goes well.

[SarahB79]

Best of luck at your out of state appointment! I hope you find something out!!!!

It's an overnight dex I believe.  pill at 11 pm test at 8 am.  

My prolactin test result is back.  It actually isn't as high as I expected it to be with lactation having resumed after stopping the cabergoline (dostinex).  It's only at 16.  But that's still much higher than the 1-3 that it has been for the last 8 months with cabergoline.  It was 50.5 prior to beginning treatment.

[rumpled]

Great!
I got a 3T MRI too and they are so much clearer - but it still helps if they know the dynamic technique as sometimes the tumors show up when they take in the dye at different rates and that is how they are found.

Are you just getting an overnight dex or a long dex?

I will be away. I am consulting with a doctor out of state (could not find anyone local even for that! and I tried!) on my choking issues related to my myasthenia gravis and then I am back for a day before leaving to go to another state to get extensive testing on my pituitary related to possible Nelson's syndrome of even adrenal rest tissue. I will reply when I can but I will only have limited access.