hopeful for diagnosis

[kelbell2]

I have been on a wild goose chase for over ten years with little or no answer. I have a history of high prolactin levels, visible breast milk when not not not pregnant-fast forward, 7 year ago I had to have a emergency hysterectomy, both ovaries removed, I will always say that surgery change my life, I did not do well after sugery, I practically walked out of that hospital with high blood pressure since then I have been on hormone replacement therpy to no avail. Since hysterectomy, I weighed 115 lbs, 7 years later, 200 lbs, yes, and it came on over night and I cant seem to loose a pound. 1st time I had high prolactin I was also having severe migraine, fatigue, depression and anxiety. Doctor sent me for mri,, no findings. So, post hysterectomy I have developed allergy and sinus issues, ibs, gallbladder removed, pre-diabetic, neurothapy, degenerative disc, interstitial cystitis, fibromyalgia, chronic fatigue, the list goes on and on so as u see the prolactin issue got put on the back burner. Now had bloodtest n prolactin is high again, what led to his was severe headaches, nausea, profusrely sweating with chills, mouth sores, sore throat, ey ye pain and pressure, blurry seeing patterns and shapes that arent there, my underarms stink no matter what and greasy hair and skin. Ft all around belly, moonface, red, cant tolerate heat, and on on!!!!!!!
My question is when getting an mri can by they see our tumor or is there a vs sp pre ecial on me e for pituitary and if so what is it called? I am female, 45 y.o. just wondered what yall thought, I see endo for the first time next week, and I do not think I have ever had a cortisol test, has any of u had hese symptojs?

[rumpled]

Cortisol can be tested with blood (8am fasting, or midnight best IMHO), 24 hour urine, or saliva - usually that one is midnight in place of midnight blood.

It takes a lot of testing for pituitary as there is no one test to rule things in or out. Even the stim tests can be iffy frankly - I failed ALL the stim tests. Low T can indicate elevated cortisol, but also other things, so you have to get good testing.

I get the ocular migraines.  Not fun.

A pit MRI is called a dynamic MRI - it means the contrast is given while you are in the machine and the uptake is recorded. It helps the tiny lesions to show up. For instance, one of mine never showed up until I had a dynamic.

Some larger ones can show up with a brain MRI but can be overlook by radiologists or fall between the MRI slices (the are 3 -5mm!).

Good luck with endo! Let us know.

[kelbell2]

I  cant remember if I told you about this but I have low testosterone thx

[kelbell2]

Yes, I have had every test ou can imagine and I have a rhumy, she takes care of my fibro, neurologist, eye dotor sa Au ys im having occular miraine. I have gotten worse over tn the last 2nweeks, I see endo next week. T th x

[kelbell2]

Thank you so much, I see endo next week, I live in a small town in alabama so not many doctors here, I just found out recently no no one has ever checked my cortisol levels. I did not t know there was a special urine test for that, I am extremely mad that noone has listen to me. I am assuming urine cortisol will  e 1st, along with mri

is there a special mri, I had a mri last year of m brain and spinal cord, have arthitis fom neck to lower spine, also neurologist thought I might have ms, nothig on mri so is there something different for pituitary ince neuro wasnt looking for that?

[rumpled]

You really need to seek out a proper specialist.

Have you also seen a cardiologist, eye doc and rheumy? It can help to get the support of those docs as well, as you may have other concurrent disorders too.

[rumpled]

My arms and legs are skinny, I have hair on face, breast, belly, I have to wax off, its disgusting. My testosterone is too low and my estrogen, is his typival with pit. Tumor or adrenal, I do have ic, chronic bladder inflamation, infection, leaking urine, urgent to go an nd d I have a lot of pain under my breast at ribcage, my heart goes nuts snd I have blood and white blood c cells in urine. Stiff necktht causes head da ache, ok so I ave had lots of test and everything els is ok, like my wbc and rbc count, high inflammation marker, crp and sed rate. Somebody please tell me what u think. Kel

[rumpled]

Is your doc a neuro-endo?

Are you under the care of a pituitary center? Do you get copies of everything? If not, get copies. Find a good pituitary center.

I had both a prolactinoma and Cushing's. It is not common, but it can happen. Also prolactin can rise for stress and illness so you have to determine what is raising it. You need the right doctor. It can take a really good expert to find out the solution.