Has ANYONE had or know of anyone who has had a pituitary tumor or high prolactin levels? I have alot of different symptoms that mimic depression, anxiety, etc, and I am sooooo sick of hearing that it's really nothing. I have blood work pending in lab for prolactin and thyroid, but just can't rest over this. I have taken depo injections for over ten yrs. Last inj. was in January. My depression went very serious over the past two or three months. Body aches all over, back spasms in upper back, non stop headache rarely responds to treatment, breast tenderness for past week, dark fluid leaking from each breast, and a weird out of body lightheaded goofy thing. As you can see, it screams anxiety symptoms, but the breast issues have me looking at other possibilities. Just looking for some sort of direction. Thanks.
I am scheduled this thursday for a second MRI - stella test, this time with contrast for a pituatary tumur.The first MRI w/o contrast showed nothing. I have had 5 breast surguries on my left breast due to lactation, if I don't express the milk, white thick substance then it builds up and clogs my milk ducts and I have to have it surgicaly drained. I have severe breast pain in both breasts. I have been this way for 14 years.
My first surgery was in "95" the doctor said they could remove my milk ducts but not if I wanted more kids, which I did, I had another child in "97" I had surgeries in 95, 96, 97, 98, & 08. It wasn't until 2008 that someone mentioned the possibility of a pituatary tumur to me. All these years of suffering and 4 different surgens and not one of them said anything to me about it. In fact it was a nurse in the hospital this last time who mentioned it to me, not the doctor.
My new GP sent me for a CT scan with dye and found a left adrenal ademadoma which comes from low cortisol levels from your pituatary gland. Prolactin is what you produce to lactate to much makes you lactate too little and you don't. But my prolactin levels are low and I still do so you can't always go by that.
My 24 hour cortisol urine test was 4.7 which is low but within normal range but I have been getting steroid injections most of my life I'm 43, and if it wasn't for the injections I wouldn't even had made it to that range so it shows that my pituatary isn't making enough by itself.
I suffer with wide spread aches and pains, headaches, memory problems and double vision. I went to the eye doctor and he told me that I have less then 50% of my left field vision which is a sign of pituatary tumur. Left eye, left breast - he said that the pituatary glands sits on top of your head one on each side and they are really close to the optic nerve and if a tumur grows they push on the optic nerve which can cause double or blurred vision or severe headaches. I currently take imatrex it helps but I get them every day and you only get 9 pills in a script so not practical.
I don't know what all labs tests where ordered and if the 24 hour urine cortisol tested was done, where you collect your urine at home for 24 hours and return it to the doctor or lab. but that and a MRI with contrast or a stella with contrast from a nuerologist is the way to go, because a regular GP doesn't have the knowledge to order the right test or know how to read them.
Good luck and next time try posting on the thyroid or brain board that's more along there line of expertise.
I just wanted to share with you what I have been going thru and found out. I was diagnosed with MS 15 yrs ago . Last year I had a major attack where I had severe muscle spasms, so bad that I couldn't walk . They got so severe that I was hospitalized twice. I had severe headaches, nausea and vomiting, vision problems, weakness, fatigue, cloudy head, brain fog. Everyone thought it was MS . Then I got my own reports to visit yet another doctor and found out I had empty Sella. From there I saw an endocrinologist who did a test for human growth hormone along with everything else. What we found was my IGF-1 ( human growth hormone) was over 200. I then found out thru searching the net that my years of having breast 'milk' was all due to having a tumor in the sella, which is a pituitary tumor. It causes empty sella as the tumor smashes the pituitary as it grows, thus diminishing your hormone levels. You should make an appointment with an ENDOCRINOLOGIST!!! You need all your levels checked! You will only have an elevated IGF if tumor is present. It is normally benign, not cancer but it has to be removed!! It causes headaches, fatigue, high blood pressure, brain fog, high prolactin, breast discharge, low thyroid, and fluctuating hormones across the board!!! I am now searching for somewhere to get surgery. That's why I am searching the boards to see if anyone else has had the surgery or where they went. Oh, and I also have osteoarthritis. Good luck ! But get an appointment with a good endo guy now and make sure they check your IGF-1 right away!