Intro and Question about Elevated Prolactin Levels

TheNewMrsHP · June 2012

I've been lurking on this board for the past few months and now that I got some news on test results I wanted to introduce myself and see if anyone has gone through something similiar.

I got married in March of 2011 and went off the BC pill this past March. DH and initially decided we'd "just see what happens" but realized pretty quickly that we really want to actively start TTC.

I got my last period on 3/25 right after going off the pill but haven't gotten it since. I saw my OB/GYN last week and they ran some tests to make sure everything was was ok. The test cam back and I have elevated levels of the hormone Prolactin. My dr. thinks it could be residual hormones from BC or bengin tumor on my pituitary gland. If it is a benign tumor, he said I could take some medicine to treat it.

The plan is to wait 4 more weeks and then re-test to confirm. There's still a chance that I'll get my period within the next month, but I'm obviously starting to freak out a bit. Has anyone had a tumor on their pituitary gland, benign or otherwise? I'm trying to stay positive and hope that its nothing but of course my mind goes right to the worst case scenario.

Laurakat81 · June 2012

Welcome! My best friend had elevated prolactin levels years ago and was producing breast milk. Idiot doctors said they thought she had a brain tumor but never did an MRI to make sure. They simply checked more bloodwork and when other hormone levels didn't come back suspect they acted like it wasn't a concern.

She was diagnosed with a craniopharyngioma (not a pituitary tumor but it is located right next to the pituitary so it often mimics the symptoms as it grows and puts pressure on the gland) in August last year. At that point in time her prolactin levels were back to normal.

At the time of her diagnosis she hadn't had a period in 6 years and was told she had PCOS. Instead she went blind in one eye literally overnight and went to an eye doctor who ordered an MRI and they found the tumor.

I'm certainly not trying to scare you as her case was certainly a rare one but I'd really urge the doctors to order an MRI if they are even suspecting a pituitary tumor. More often than not these tumors are harmless and never need any treatment but I'd rather be safe than sorry. If my friend had pushed the doctors harder years ago they probably could have found the tumor, removed it, saved her vision and her fertility.

MrsA111111 · June 2012

Hello!

First off I want to say - DON'T FREAK OUT - take a deep breath.

I know its hard but trust me - I was diagnosed with hyperprolactinemia due to a pituitary microadenoma in January 2010. It sounds A LOT scarier than it really is - I swear.

What are your levels at? The higher your levels means the larger your tumor *likely* is. Find yourself a good endocrinologist that also specializes in fertility if at all possible (there are diabetic endocrinologists too - they of course can help, but since you are wanting to get KU find one that is well versed in fertility!)

Pituitary tumors are VERY slow growing tumors and are benign; like my doctor said: if you are going to have a brain tumor at all, this is the one you want. They respond very well to medication, though, when they are macroadenomas (a tumor greater than 7mm) you may need to undergo surgery to remove it.

The medication takes some time to get used to, but you do eventually get used to it. And like I said, these tumors respond very well.

Elevated Prolactin levels mess with your ovulation and possibly your LP, but as soon as your levels get down into the normal range, you should be able to conceive naturally (according to my endocrinologist). You will have to stop taking the medication as soon as you know you are pregnant. History shows that while pregnant, the tumor will likely remain unchanged - again, because it is slow growing. Pregnancy IS possible - you just have to get your levels down to normal which may or may not happen quickly, as it takes time to find the right dosage that you need.

Also - I am not sure if you have health insurance or not. But if AT ALL POSSIBLE, go to an independent MRI clinic (not the one in the hospital)! The hospital MRI's are 3-4 times more expensive - you can save a lot of $$ by going to a clinic!!! Oh, and the medication is expensive too - so I really hope you have insurance.

If you need more advice or encouragement or whatever, feel free to PM me!!!

TheNewMrsHP · June 2012

Wow that is some crazy stuff. I would have had no idea I wasn't ovulating or there was a problem bc I've been on bc for 6+ years. The dr didn't say exactly what my prolactin level, just that it was slightly elevated and he wants to retest in 4 weeks to if it is consistent. If it's still high he wants to do an MRI so I guess that's a good thing.

I am lucky enough to have relatively good health insurance and a hsa account to help with out of pocket expenses, although one problem like this can drain that.

Thanks for the encouraging words mrsa, I swore I wasnt going to freak out if this process took a liitle while, but I never expected news like this

MrsA111111 · June 2012

TheNewMrsHP:
Wow that is some crazy stuff. I would have had no idea I wasn't ovulating or there was a problem bc I've been on bc for 6+ years. The dr didn't say exactly what my prolactin level, just that it was slightly elevated and he wants to retest in 4 weeks to if it is consistent. If it's still high he wants to do an MRI so I guess that's a good thing.
I am lucky enough to have relatively good health insurance and a hsa account to help with out of pocket expenses, although one problem like this can drain that.
Thanks for the encouraging words mrsa, I swore I wasnt going to freak out if this process took a liitle while, but I never expected news like this

If I were you, I would find out what your levels were - you should just be able to get the info over the phone from the nurse. Normal range is under 29.2 (though there are different labs which may use a different measurement). I am kind of surprised that he wants to wait 4 weeks to re-test; I was re-tested about a week later. When my #'s had even dropped a little bit, he still ordered an MRI.

Make sure you stay in contact with your doctor - especially if your eyesight worsens. Because, if you do have a tumor it can push on your optical nerve and you can go blind if you aren't treated.

I know everything will be alright - keep us posted!!

Expatrica · June 2012

There's some very good advice in this thread so far and everyone is right in that you shouldn't freak out.

When I was 21 my gyn noticed (during a routine breast exam) that I was producing a teeny tiny amount of breast milk. I was sent for blood tests and it turned out that I had very slightly high levels of prolactin. I can't remember exactly what the numbers were but I think it was around 30 or 31. I was sent for an MRI and did not have a tumor. I was monitored every couple of months for a while and the numbers never changed. They said that sometimes people just have slightly high levels for no reason. The elevation was so minimal I wasn't even treated with medication and I continued to ovulate the whole time.

Just thought I'd share my story. Even if you do have a tumor present they're very treatable and not near as scary as they sound at first.

Good luck!

BorderGirl · June 2012

I've had a pituitary microadenoma. Find yourself a GOOD endocrinologist. I was referred to an endocrinologist for mildly elevated prolactin. He sent me for an MRI and told me everything was fine. After mentioning all this to my dermatologist of all people, she had me get a second opinion. My new endocrinologist had me pick up my results and I was shocked to see that my MRI showed a 3-4 mm microadenoma. A few months later, it had increased in size to 7mm. My endocrinologist immediately (before my second MRI) ordered a complete pituitary blood panel and my ACTH level was astronomically high. Prolactinomas are the most common kind of pit tumor but not the only kind. And if it wasn't for a fabulous endocrinologist it would have been missed.

If I were in your shoes, I would ask for a complete pituitary blood panel, thyroid panel (thyroid problems can elevate prolactin), and an MRI. If a tumor is found, get an appointment with a neuro-ophthalmologist as well.

Prolactinomas are treatable with medication. Mine is not. But the good news is they can wax and wane, and for the time being mine is no longer visible.

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