Prolactinoma Support Group

A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...

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Endocrine System
/ Prolactinoma Support Group

Need some advise

longarm20
longarm20
I finally got my blood work back and all of my other levels (cortisol, thyroid, etc..) are in the normal range but my Prolactin level is 20.3 (15.2 is apparently the top of range). My MRI showed no signs of a tumor. My original issue going to the doctor was a blood test showing my testosterone level of 13 so my Doctor ordered the MRI done and I also ordered the full bloodwork done for a diagnosis of Hypopituitarism. Now, no tumor showing but high prolactin has changed the diagnisis to Prolactinoma. Is that possible with no visible tumor? I had my first T shot 10 days ago and my T levels went up to 415 after 1 shot. This is all confusing to me but from everything I have found on my own, it sounds like a text book Prolactinoma with treatment using bromo or caper. Can anyone with experience with this give me some input? Does that sound like I am on the right track? My doctor is very unfamiliar with this but an Endocronologist who is a friend of the families has pointed me in that direction.
freeranger
freeranger
The low T and higher than normal Prolactin indicate a Prolactinoma but usually the Prolactin would be much higher than that. Mine was 15,000 at one point. I would definetly follow up with a good endo.
deleted_user
deleted_user
I get my prolactin checked now twice a year and MRI's depending on my prolactin levels. In my last MRI the tumor was not visible but my prolactin is still a little high and I still suffer from all the symptoms. I agree with Freeranger get a good endo and also do as much research as you can.
deleted_user
deleted_user
There is a form of hyperprolactinemia referred to as "idiopathic hyperprolactinemia" whereby there is no tumor visible, yet the prolactin levels may be elevated.

Certain medications will raise Prolactin, so you might check to see what you take and discuss that with your Endorcrinologist.
longarm20
longarm20
Thank you Cheyannne and Tigertales. I am working on getting an appointment now. They need to rveiew al of my records before they will see me. I really appreciate all your help.
deleted_user
deleted_user
Staying calm is by far and away the best skill to develop here. Also, be open to try different medications. This illness is as individual as the individual when it comes to reactions and responses to treatment options.

We share a lot of commonalities, yet from a number of different perspectives based upon the severity of our illness and our side effects.
deleted_user
deleted_user
My prolactinoma is no longer visible either, but I still have symptoms and my numbers go up and down. I started out with a 4mm prolactinoma, the medication took it down to where it is no longer visible. I went off the medication for 6 mos and the tumor immediately began growing back. I had a MRI, but the tumor wasn't visible, but my numbers showed that it was growing back. I'm back on the meds and the tumor is still not visible, but my numbers continue to fluctuate.

This is often a confusing road that we're on. I can only take it one day at a time knowing that it is constantly a puzzle and the doctors aren't very clear on how to treat this chronic problem.

Blessings and good luck!
longarm20
longarm20
You guys are all so great. Thank you. I am onn the roller coaster that everyone speaks of. Today, I could barely get out of bed due to exhaustion but the past week I felt good. I was able to give myself my first injection on my own. That was tough. I had about 6 good days out of the 14 days after my first injection. I'm waiting on the endo to review my file and contact me. In 3 weeks I have to go out of state, leave my family, for 2 and 1/2 months. It has been alot to handle along with the time constraint I am under to get this controlled enough to attend my training. I am hopeful that the T shots will be the solution without any other meds but I will know more when I see the dno. It will be a relief either way just to get a professional to talk to and sort it out. In the mean time, this group has been my saving grace. Thank you all.
deleted_user
deleted_user
Hi Longarm!
I agree ith free ranger too, you definitely need a good Endo. I was diagnosed with a 1.3 CM tumor in June & my Endo checks my Prolactin every 3-4 weeks. If you do have a Prolactinoma, it sounds like a small one, so you're fortunate you caught it early. My cousin had a small tumor & was on Bromo. After 1 year the tumor was gone, then her Endo kept her on the Bromo 1 more year & she's been fine ever since. Her tumor has not come back.
I'm on Cabergoline & having a tough time with the side effects. It's been a roller coaster & I'm still not sure how I'm going to proceed if I keep feeling this bad. My Endo did mention that certain psychiatric meds can elevate your Prolactin. Good Luck to You & keep us posted on what you find out. :)