imported_sahn

Never done this before, here's my story, hope someone can provide some advice or has had a similar experience...

Went off ortho tricyclen Dec 05 with plans to start family after being on bc for about 12 years. I am 29 now. After period in January right after last pill pack, I have not had a period since. No cramps or indications what so ever of a period, just gone.

Saw gyno in March and had all hormone levels tested. Took 10 days of progestrone to try triggering period start. No luck. Discovered prolactin level of 199. Had MRI and discovered I have a pituitary microadenoma, a benign tumor that can cause high prolactin levels. Dr. told me my body thinks I am pregnant even though I am not. Started taking bromocriptine to reduce prolactin level and reduce size of tumor. All other hormone and thyroid levels normal.

May prolactin test showed a level of 7, June test showed a level of 14. Had another MRI here in July, still taking bromocriptine daily. Tumor is still same size, Dr. not concerned because prolactin level is down.

However, I am concerned. It has been over 6 months now with no period and if my prolactin level has been normal for at least 2 months now it tells me that that is not the casue of my lack of period.

Dr. suggests I start taking progestrone again to try period trigger or that I can start taking clomid to trigger ovulation. I am afraid to jump into taking more drugs. Any suggestions? How long should I wait to see if my period will start on its own knowing that the Dr. tells me everything is normal now?

Thank you.

AFemaleProdigy

Wow! This situation is way out of my realm unfortunately. I do not know much about prolactin or the medications you are taking. If you are feeling unsure about your doctors advice, then get a second, or even third opinion. It's your life and you're better safe then sorry. Maybe someone else here has been or is going through this same thing and will shed some light on the situation. Good luck and please keep us updated!

__________________
~Jessica

imported_LAO

I was 22 and got off birth control pills after one yr.
I cannot remember what I was taking at the time.
I had the same experience but was not married or trying to get pregnant...I did not get my period for 7 months and after going back and forth to the doctor...he finaly recommended a reproductive endrocronligst. The first blood test showed a prolactin level of over 300 and the MRI showed a pituatry microadinoma.
I began taking Parlodel and within 1 year my period came back.
I did not get my period until my levels where normal and there was no sign of the tumor...The doctor explained that it had been reduced to excess cells.

I had many problems getting pregnant in my 30's.
I was then diagnosed with Lutial Phase Defect (all due to the elevated Prolactin issue)
I was on the maxim amt of parlodel and clomid and progestorone...etc. I was artifically inseminated 4 times before I got pregnant.My levels have been insinc ever since.
I am now 41 and have two children.
My advice to you would be to make sure you are under the care of a very good reproductive endrocronoligst.
Good Luck and never give up hope!!!

imported_lsmith1319

You have explained almost exactly what happened to me. I was a Sophomore in High School when I got a pituitary tumor. I didn't have a period, my breast lactated,pretty much my body thought it was pregnant but it wasn't. I didn't have a period for about 8 moths or so. I was put on Parlodel for about a year. They check my prolacten level throughout that time and it was always high. Once my prolacten level was normal they did another MRI and the tumor was gone. I started having a period again a couple months later. The doctor explained the same thing to me. "that is had been reduced to excess cells.

I am now 23 and have 16 month old twin boys. They were natural twins. I did not take any fertility drugs.

In the last 4 weeks I have been having severe headaches so I went and got a MRI done. They told me today that my pituitary tumor has returned.

I agree that a good endocronoligist is very important to have. Good Luck to everyone and hang in there. :-)

imported_frustrated45

I was just wondering, I have high prolactin levels.....I am not sure the exact number, but I had my MRI and there was no growth on the pituatary. So now I am told I will have to be referred to an endcrineologist(sp??) and that the treatment will be medication of some sort. My question is how long generally were you on your meds till your prolactin levels went back to normal?? I so desperatley want a baby, and I am not getting any younger.....If you could share your experiances with me to help give me a general idea, I would appreciate it!

imported_sahn

Thank you for your posts. Since my post mid-July I started taking 10 days of only progestrone (no clomid) once again and did finally get a normal period July 29th that lasted 5 days. I have not had another period since and I feel the one in July only happened due to the progestrone.

When trying to call my Dr. to let her know, I found out she was going to be out of the office for a month so I waited to be able to talk with her again. At end August calling the Dr. again to set an appointment, I now find out she is on medical leave through January. I now have an appt with a new Dr. set in October at a Obstetrics, Gynecology & Infertility clinic.

In August however, I did get the doc taking over the patients of my previous Dr. to schedule another MRI her in September for me that my original Dr. and I had planned.

That MRI showed no change in the tumor at all and the Dr. recommended that I just keep taking the Parlodel (bromocriptine) as I have been. I have not had another prolactin level blood test yet since the one in June but plan to schedule one. Shouldn't the size of the tumor be decreasing?

I am only taking one 2.5mg tablet of parlodel daily in the evenings. It sounds by a couple posts that you both had the tumor basically disappear before things came back to normal. What dosage of the parlodel where you taking?

I wonder if I need to go back to a higher dosage. I tried taking 2 a day for a few weeks but got such severe headaches that since my prolactin level dropped, the Dr. didn't see a need for me to keep the dosage that high.

I feel like I am kind of at a standstill and look forward to the new Dr. I will be seeing in a few weeks. We would really like to try getting pregnant soon.

Best wishes to all!

zukemania

After I had my daughter at age 23, I began taking birth control (a shot)...about 10 months too late (ha ha. j/k). Anyways, after I took the shot, which lasted about 3 months, my period never came back. I was told the same thing as the first posting that I saw and have never gotten my period back. The doctors flip flop from one thing to another. They are absolutely clueless. They seem interested in helping and give up when the answer isn't obvious. I also took Bromocriptine but became very moody so promptly stopped. I am now 33 and still no period. Eventually, at around age 30, a doctor said, well, it looks like early menopause. I was shocked, hurt, and was annoyed that the doctor waited until I guess I was "of age" to give such a diagnosis instead of working towards figuring out the problem. In his mind "problem's solved."
I then moved to another doctor who was equally baffled.
I am still periodless and have serious side effects from the medicine so I stay away from it...
Wish someone could help us...

bamaangel

Hi. I just found out this week that an MRI revealed I have a pituitary microadenoma. My symptom was my breasts were leaking milk. At first I thought it was hormonal because in December '07, I went off my pills to try for a second child (after 12 years). I think they started leaking around March. Since I had the nipple discharge, my dr ordered blood test, which revealed an elevated prolactin level (108.7). She scheduled an MRI which revealed the tumor. I am awaiting an appointment with an endocrinologist. My question is, how hard is it to get pregnant while on this medication? Also, do you continue the meds while pregnant? I'm already 36 and don't have much time to have another baby. I know I can ask the dr all this, but I'd like to hear from someone who has actually been there. Thanks.

want2bamama

I am feeling a bit relieved that some here have had children after a pituitary tumor. I had a really sh-tty doctor at first. I hadn't had my period in over 7 months at the time, and she told me to go back on the pill. I didn't want to be on the pill anymore. I was 32 and had been on it since I was 16. I wanted a break. Well, come to find out.. when you go back on the Pill and get that "period" - it could very well possibly be a withdrawal from the hormone pills you take for the first 3 weeks. Its not actually a period. Ugh. I finally switched doctors. He checks my records on the computer and noticed that my prolactin levels were high on my previous blood work. Why the other doctor did not care to figure out what was wrong is beyond me....but the new doc. put me on Bromocriptine 2.5 mil. I then went in for an MRI and found a micro tumor. This was in February. It is now April and I just went to the doc. the other day. My prolactin levels are down (Thank god!) ... but I still have no period. It's been over a year now with no period. I have no children and I so badly want to start trying within the next year. My doc. told me that I should get my period soon.. but I am scheduled for another MRI in July. I feel for everyone going through this.. especially if you have no children and are concerned you may have trouble getting pregnant. I wish you all good health and 100% recovery!!

nena308

I am a healthy 28 year old and I was diagnosed with microadenoma at age 23. They diagnosed by accident you can say. All through high school I suffered from sever headaches and my vision continually changed, I had sporadic periods and always thought it would regulate. Initially I would go to our family doctor who diagnosed me with migrane headaches. To make a long story short, I married when I was 22 and got on the shot for birthcontrol. One year later we wanted to get pregnant. So I went to my OB and began to talk to him. Initially we waited thinking that I was not getting pregnant because of the effects of the Depo Shot, but as time went on I realized something was wrong, my OB did blood work and found my Prolactin levels were at about 15-16... He made his diagnosis a week later and started me on Dostinex .5mg 3Xs per week and checked my blood work weekly. Soon after my periods normalized and I became pregnant, had a miscarriage and 3 months later became pregnant again my daughter is now 3 years old and ready to try for another baby. My advise to any women going through the same symptoms is never give-up and always follow-up, if you don't get straight answers get a second, third opinion. Good LUCK!!!