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 prolactin levels fall unless she breast feeds her infant.

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MRI results - what do I need to ask?

Hi there,

I quick history, hubby and I (aged 36) are trying to conceive. In November of last year I stopped taking my contraceptive pill but have had no periods since. An ultrasound in January confirmed I have PCOS and blood test since have shown high prolactin levels (although I don't know the actual figures). I had an MRI about 6 weeks ago and am due back at the hospital for results next Thursday.

My last hospital appointment left me a bit fazed as I was totally unprepared for all the questions and tests etc that I came away with so I'm hoping to be a bit more organised this time.

Could anyone recommend what I should be asking? Is it OK for me to ask how high my prolactin levels are, the size of the tumour if any etc?

Many thanks in advance - I have know since my early twenties that I had PCOS but only now know why.

Lucy

Replies

deleted_user
deleted_user

you ask anything and everything that you want. Levels, size, when do they recheck to see if growing or shrinking, medication options, surgical risks, touching optic chaism... anything that crosses your mind!
deleted_user
deleted_user

Ask anything that you can think of. Don't be scared to ask about the levels, size or anything else. It's YOUR body and you have every right to know what is going on with it. My normal doctor didn't tell me what my levels were, they just sent my results to my Endocrinologist. Since they can get into the hundreds, or even thousands, it bothered me not knowing. Find out everything you can now so that you don't wonder about it later. Think of all the questions that you want answers to and write them down if that helps you remember them, it can be overwhelming finding out that you have something like this. Good luck! :)
JJames3000
JJames3000

Exactly what the two previous posters have said is correct. It is YOUR body. You ask every question you can think off. If they tell you anything that you do not understand what it means, ask the question.
deleted_user
deleted_user

I know the others have answered your question. I wanted to touch on conceiving. I too was in your position at one time. My husband and I tried conceiving for about a year and then I started having breast milk. We thought we were pregnant but it was just the beginning of my challenges of a Prolactinoma. I was put on medicine to help lower my Prolactin levels. Once they were lowered I still couldn't get pregnant. My ob knew my story and gave me something to kind of "jump start" my ovaries. I can not for the life of me think of the name of it but if you talk to your ob when your prolactin is normal and let her know you've been trying then she'll probably prescribe the same thing. The medicine is normally the first course of action they do for a couple that has been trying. Anyways, within 1 month I was pregnant. After my son was born, I went back on my meds to get my prolactin back down and within 7 months I was pregnant again. So the moral of the story is, IT CAN HAPPEN so don't give up or get too down. Just takes time getting that Prolactin down.
deleted_user
deleted_user

I just remembered the name of that medicine that jump started my ovaries. It is Clomid and it worked on getting my cycle normal as well as the output of my ovaries. Hope this helps and good luck.
deleted_user
deleted_user

Thank you for all the replies & encouragement. I saw my gynaecologist yesterday and went armed with my note book! My MRI showed a microadenoma (although I'm not sure what size) and I found out my prolactin levels from the first blood test we're 2154.

I have been given a prescription for 500mg per week of Cabergoline which I'm to take for three months before going back for a check on my prolactin levels.

The doctor seemed very positive which was reassuring although she did say not to try and get pregnant whilst on the Cabergoline so I'm hoping we won't have to wait too long before we can start again.

Oh, and my notes will also be sent to the endocrinologist to see if they would like to see me also.

Fingers crossed!
deleted_user
deleted_user

Apologies, I think I got my dose a little wrong! Should say 5 - I think!!!
deleted_user
deleted_user

5mg is still veryveryvery high. do you mean 0.5mg? that is fairly standard.
freeranger
freeranger

yes 0.5mg...500mg would be a very scary dose
deleted_user
deleted_user

Oh I don't know - I pick up my prescription from the doctors tomorrow so I will double check!
deleted_user
deleted_user

Is 5 a high dose? I was on 2.5 Bromo but now I am on 5 mg. Is that just as strong as the other?