What is Prolactinoma
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...
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I was having symptoms of a prolactinoma since about October of last year (2008) and didn't really think anything of it and never said anything to my doctor. I went in for my annual exam in January and told my Gyno about what had been going on (headaches, lactating, periods incredibly random). She was very non-chalant and said she thought it was nothing but sent me for some blood work. A few days later she called me and told me that my PRL were elevated, but not very high (34), and that I needed to do another round of bloodwork and go see an Endocrinologist. The second batch of blood work came back at a level of 28 (again, not very elevated).
When I finally got into the Endo he did another round of blood work and my PRL was only at 26 now, but my symptoms have not changed. He did not want to do an MRI at that point and wanted to wait a few months.... do more blood work.... and then come back in and see where my levels are at. He said, "Sometimes at the beginning of these things, the levels will go up and down until they stay raised. And if we do an MRI now, the prolactinoma can be so small it won't show up." Has anyone else heard this from their doctor? Well, it has now been 2 and a half months and I have the same symptoms excpet one change.... I have had not had a period for 2 months. Has anyone else had low levels like this and still had all of the symptoms? Am I missing something? Also, any advice if I go back to the Endo (June 1st) and he again doesn't want to do an MRI becasue my levels are low (that is... if they are still low)??? Any advice? Thank you all so much!!! p.s. I have learned more from this forum than from any doctor I have spoken to regarding this issue :) Posted on 05/21/09, 09:05 pm |
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Welcome,
A prolactinoma is a slow growing tumor it take years of high level to form a tumor. You have caught yours very early. Your Dr really does sound like he is doing the right thing for now. Trust me the drug you take for this are not nice. If the lack of a "period" bothers you, there is always birth control pills. It will not effect the prolactine levels but it will force your monthly cycle. 
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Thanks for the reply Apple123 :) I have been reading a lot and am not looking forward to any type of tumor or medication, that is for sure. I am on birth control pills and still have no cycle. I guess I'll see what the doctor says next week. Thanks again!!!
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One of the things the pituitary controls is ovarian functions. Make sure the DR checks your other hormones like Estrogen & progesterone. Even though you are on birth control they might not be the right levels for you.
I first had high prolactin levels in the late 90's and MRI revealed nothing so I wrote of prolactinomas. 10 years later I slowly kept getting worse and they did find a super small prolactinoma. The most important thing is getting that hormone in the right range. Having the MRI doesn't add much unless you are having vision problems. In my opinion. Sounds like a good plan of action at this point.
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You could always get a second opinion. I had to go through a ton of doctors. Some saying it was just stress, and others telling me I was just depressed and wanting to put me on antidepressants. It's tough finding a doctor that will listen to you, but it's your health so it is worth it. Find one that will give you the mri, better to have with and without contrast to have a better shot of catching it. (That's what my doctor told me anyway)
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Alyson,
My prolactin levels were fairly low (in the 50s and 60s), but it took a while for my gyno to listen to me and believe me that something just didn't feel right. I'm not sure why your doctor is hesitating when sending you for an MRI- it won't hurt or make any issue worse if it is done. In my own case, I was sent for the MRI, but my gyno had said "since your level is only slightly elevated, you probably only have a few cells growing on there. I wouldn't worry about it." Well, thank God I got the MRI because my tumor was about 1.5 cm, much bigger than what he suspected. To make a very long story short, I did not try the medication because a neurosurgeon and endocrinologist said that I probably had a non-functioning pituitary tumor. Meaning, the tumor is fairly big, but it does not excrete prolactin...which is why my prolactin levels were not through the roof. This COULD be your case, but only an MRI can tell. I literally just got home from surgery last night and had the tumor removed on Wednesday. My advice is to push to have an MRI done. No doctor can assume anything until they can see what's going on in there. Second, trust your instinct and see as many doctors until you feel comfortable with one. Good luck.
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