High Prolactin Levels and Eye Damage..????
5 Replies
Amber - April 28

About 2 years ago I went to my doctor with problems with irregular periods. Bloodwork revelled high prolactin levels and further testing revelled a pitutary tumor. For the past 2 years I have been expressing my desire to have a baby but was always put off saying that they needed to know exactly what was going on. So to make a long story short, they still aren't 100% sure that it is a nonfunctioning tumor....they need more time! I told the doctor today that I want to start trying now and he said that is fine but I had to understand that there is a risk (although small) that pregnancy could cause opitical nerve damage in the later stage of pregnancy. Has anyone who is pregnant had problems with this? Or if anyone has any information, I'd love to know. Thank you!! :)


Heather - April 28

I don't know much about this subject, but... From the beginning of my pregnancy (was only a 9 week pg) I noticed changes in my vision. I figured it was just because i was pg. After the m/c my eye sight hasn't gotten any better. It is more than a noticable change too. I can't read street signs. Have to get a totally new prescription.


Amber - April 29

Were you told of your condition and the risks? Was there only a small chance that something would go wrong as I was told?


Carey - April 29

I have a prolactinoma (aka Pituitary Tumor). I have had it for over ten years now. I have two healthy children and had easy pregnancies with both of them. I was never told to wait. I take parlodel to keep my prolactin levels in check. It sounds as though your doctor may not be quite up to date on his/her info. Are you seeing and endocrinologist, and if you aren't, then you really should. I have no eye problems, no glasses, etc. I think you should go to another doctor and get a second opinion. Please let me know if you have any other questions.


Amber - April 29

Hi Carey,
Yes I am seeing an endocrinologist and have been for 2 years. Everytime I go he tells me to wait another 6 months. From the very first time I went to see him, I expressed wanting to start a family..and it was just wait until we figure this out..blah blah blah. And again this time he tried the same thing...I had enough and said I am doing it so you'd better tell me what you are going to do for me now. That woke him up! :) So I guess his reasoning was to wait until he is 100% sure it is a non functioning tumor (which he strong feels is). Is your tumor non functioning?? DId you have your chidren before you found out about your tumor?? Were you able to stay on your parlodel while pregnant?? Was it difficult to get pregnant with your prolactin out of sorts??


Carey - April 30

They found my tumor when I was 15. It is a non-functioning tumor as well. I did not have any problems getting pregnant, in fact, both times we got pregnant the first month we tried. I had been on the medicine for seven years before I got pregnant and yes, I did stay on it throughout the pregnancies. You can go off of the medicine if you want to nurse when the baby is born, but I forgo that to save myself some trouble. That's really odd about your doctor. I am sorry to hear you've been waiting that long. I never even really thought about it when I wanted to have my kids. I guess some people have a really hard time. I wish you all the luck and please feel free to ask anymore questions that you may have.



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