Prolactinoma Support Group

Sometimes the symptoms we experience are different than what the symptoms doctors believe we should be having. Most doctors acknowledge lactation, menstral disturbances, and (depending on the location of the tumor) vision issues, but little else. However, most of us have other symptoms that we feel should be addressed. Sometimes the medications will help alleviate them, but not always.

Some of my other symptoms have been:

Headaches

Tunnel and double vision

Complete lack of sex drive

I have other complaints, but I also have other medical issues, so I don't know if they are related to the prolactinoma or something else. I'm hoping to make some connections, by finding out what other people have experienced.

What other symptoms have you experienced?

Has anything helped alleviate these symptoms?

I've just been diagnosed with a 6mm prolactinoma. Must admit I am a little freaked out but trying to not let it get to me. The only indication I had that something was amiss is I was having flushing (sort of like hot flashes). I thought I might be starting menopause as I am 44. After a visit to my doctor in May and bloodwork results showed my prolactin was elevated but everything else was normal. I was on Celexa so my doctor thought that might have something to do with the elevated prolactin so I stopped it and had my blood redone in July - prolactin was higher. Had blood redone on Sept. 8th and an MRI, prolactin up just a wee bit and 6mm prolactinoma. Just waiting o see the specialist. Had a hysterectomy at 36 so no impact on menses. Took LurponDepot (3 injections) prior to my hysterectomy to shrink fibroids and wonder if there is a connection.

I have had a roller coaster of symptoms. Fatigue, lost meses, leaking breasts (and some times very sore nipples), crazy migraines, nausea, dizziness, and the constant feeling that I need to blow my nose. The nose thing is from the Dostinex, I am sure of that. Most of the other symptoms I am unaware if they are caused by the tumor or the medication. The headaches seem to be from both....like they are already there most of the time and the Dostinex days just make it amplified. The fatigue was there before diagnosis and continues to this day. Other than lots of coffee and mental self-pushing, I almost live a pseudo-normal life. Every few months, however, the fatigue and headaches take me off my feet with disastrous consequences for my life. Usually during these episodes I lose my job, friends, and many opportunities to get out in the world and enjoy the company of other people. I grow tired of re-building repeatedly and digging out my house after periods where I am to not well to get up and clean up the place. I pray that going through the surgery at least helps some of these things. Hopefully one day I can look in the mirror and not see "Tumor Girl" and her sad eyes.

I never connected my flushing to the Prolactiloma.

Missmelody-

Have they checked to see if your ACTH production has been affected by the tumor? ACTH tells the adrenals to produce cotisol, and some of the things you are describing sound like you may be low on cortisol.

Going for a raft of bloodwork this week before I see the specialist on Nov. 8th.

Rhub, The docs keep checking that and keep telling me I have normal ACTH but the symptoms persist.

Have they also checked your cortisol level?