How high is your prolactin?
Don't worry... I was in your exact shoes a few months ago. Turns out I do have a pituitary tumor, but it's sooooo small. I am being treated with Dostinex (Cabergoline) and in 8 weeks time my prolactin is 3.4! YAY me. I feel a lot better too. Side effects are noticable at first from meds, but overall effect is worth it!
You certainly have the most common symptoms of a pituitary tumor, but this doesn't mean you have one. The endocrinologist will decide if an MRI is needed, and probably order more blood tests.
Do you have more trouble getting up in the morning than is normal for you? Is your peripheral vision good? The endocrinologist should order an eye exam to check your vision status.
Try to write down any questions you have for the endo.
And try not to worry until you get more test results. It's possible there is no tumor.
Hi, how are you today? Have you had any imaging tests done yet, like an mri? It is good that you are going to a endocrinologist. Something to keep in mind is that if things are really pointing towards issues with your pituitary that you are going to want to have a endo that specializes in the pituitary. How long have you been having symptoms? A mri is really the only way to tell if you have a pituitary tumor.
Have a list of question written out before going.
1. Ask how much experience they have with pituitary issues.
2. ask about getting a mri.....they may want to start with a ct scan first be prepared for that.
Prolactin can be elevated because of thyroid, medications or due to a pituitary tumor - those are the most common reasons.
Typically, a prolactinoma is treated with medications.
You should get an MRI with and without contrast (preferably *dynamic*) so you have the best chance to see it but even so up to 40% do not show up even if one is there as they are so small.
CTs usually do not show them unless they are very large or it is an empty sella.
Testing is the best way to show what is going on really - as MRIs are only so so in accuracy. Mine hid for 12 years!
Make sure you get copies of everything - tests, films, reports and then learn to understand them. It takes a while but it is worth it.
I had a prolactinoma and Cushing's tumor.
Hi - you mentioned MRI with and without contrast (preferable dynamic) what does the dynamic mean??
I had a pituitary tumor 27 years ago that started being a micro and within 6 mos. turned into a macro. It was removed and since then, so far so good. I had amenorrhea/galactorrhea which was the first symptom manifesting itself to take me to the doctor. I went through numerous tests within the 6 mos. period and it was explained to me the damage to the optic nerve that could happen if I didn't have it removed. I left the hospital on demopressin, but surprisingly the need cleared up and later I found that diabetes insipidus can occur due to trauma. Since they went up through my nasal passage to remove the tumor, and grafted skin from the groin area , it was a trauma to that area. There is so much more known now.
My son's endocrinologist seems to take it for granted that he will have diabetes insipidus
after surgery. It does result from trauma to the pituitary during surgery for many people. His adenoma is on the anterior part of the gland, whereas diabetes insipidus is caused by damage to the posterior lobe. It doesn't make me want to rush him into surgery to know this!
This is one of the reasons it's important to find an experienced neurosurgeon, who has done a LOT of pituitary surgeries.
Dr. John C. Vangilder, MD at the University Of Iowa Hospital performed the surgery for me. I was only in my early 20's. They couldn't tell me why it developed and grew so fast in such a short time into a macro-tumor. It was starting to press on the optic nerve and affecting my peripheral vision. They told me it shouldn't come back, but that women older in their 40's or so had those type of tumors.
I never researched it, because at the time this all happened, I was a nursing student and it totally changed my perspective on the direction I would take. When they took the packing out of my nose, I laid on the bed trying so hard to stay still with tears streaming out the corners of my eyes from the pain. I remember being told that if I hadn't have had the surgery, I wouldn't have been able to have children.
No one told me about the diabetes Insipidus. I woke in the middle of the night feeling like someone hit me with a hammer and needing to urinate frequently.
I'm so sorry you had to go through that experience. I can't stand the thought of my son having to go through this. I wish I could change places with him. He will be 13 next week, though he still looks 9, from lack of growth hormone. He also has a macroadenoma, close to the optic chiasm. I check his peripheral vision daily. So far, so good.
I have a lot of decisions to make, affecting his future. He says he doesn't care about growth hormone loss and being short, if he can avoid surgery. If only it were that simple.
Considering how things have improved with techniques, you have a lot going for you with your son. Being young at the time it happened to me, I was just over 21 and had to make my own decision. I just took the leap and went for it. Now years later, and two daughters later, it was the right decision.
I learned to live with the "not knowing what caused it so young". My sister, who had fibroid type of tumors had her own ideas. I remember reading through the pathophysiology book I had for my class and scaring myself with all the possibilities of what could happen if I didn't have the surgery.
Like I said before, the diabetes insipidus cleared up a few days after I went home. I hope the best for your son and you and making the right decisions. Getting lots of information is good. :-)
I finally saw the endocrinologist yesturday and apparently my prolactin levels should be around 580 and im in two thousands, hes booked in me in for a mri and did more blood tests, my doctor thought it may be my anti depressant causing this as it blocks the messages or something like that, but the consultant said he thought my evels were too high for this and he thinks it is probably a tumour.
ive also got to see a eye specialist as my vision is getting worse every day, and my head is pounding all day long its driving me mad! i also cant keep awake.
i shall find out more soon