prolactin levels / pituitary tumor

[SarahB79]

Just out of curiosity, for those of you with pituitary tumors...

What were your initial readings of prolactin before treatment?  

What else was effected in your body by your tumor?

What are they now and what treatment are you doing and for how long?

[AngieD123]

At age 7, my daughter began gaining weight for no reason. No dietary changes. after a year and a half, she had gained close to 28 pounds. Her pediatrician assumed it was a fatty diet, and no amount of explaining she didn't overeat would make him believe me. General blood work came back normal. By age 10, we found a pediatric internist who would listen. Looked at photos, listened to everything I said and agreed...this was not dietary related. She immediately ordered more intensive blood work and cortisol testing. A higher than normal prolactin level was noted and along with the other symptoms, made an initial diagnosis of a pituitary tumor since her vision had also become worse over the last year, with a major prescription change. The MRI was without contrast...and showed nothing. We were referred to an endocrinologist who discounted the lab results as a fluke, wouldn't listen to anything I said and was only concerned about blood sugar levels because she was a large child and concerned she had diabetes. Her glucose tolerance test came back normal. She made some outrageous claims that her prolactin level may have been higher in the other tests because her clothing could have been rubbing against her breasts?  The endocrinologists only answer to the massive weight gain ( she was averaging 5 -8 pounds a month with me managing her food intake) was dietary. She would not listen to me and said this was just her "body type". Understand, this wasn't just holding a little weight. She would hold fat in odd places. She was in the 95th percentile as an infant and toddler as being petite and small... and suddenly, it was like her body was becoming enlarged with fat for no reason. Everything enlarged. No one in our family had this issue. It was something we couldn't explain genetically.  After being told we needed to see if she "leveled out" into puberty, I had no other resources after we lost our insurance. In an effort to be supportive, I  went on a "health diet" with her. I lost 15 pounds...she lost 3 and that would fluctuate up and down with no dietary changes. She had ZERO metabolism. Then we lost insurance for almost a year. Fast forward to now...age 15. 5'4 and 225 pounds. I took her to a new DR, she ran more tests.  High prolactin still. Not a fluke as the endocrinologist had said. This new DR order another MRI with contrast... and this one found a microadenoma. We await a neuro surgeaons call to see if he will take her case. Thankfully, we are fully insured now.  My frustration is knowing, she has had this all along...and a specialist who should be more concerned and know this was not normal... sent us home saying all we needed was a dietician. Our journey with all of this has just begun in understanding what exactly is going on with her body and how it can be fixed. As I read through the posts on this thread, it occurs to me, she may very well have more than a tumor increasing her prolactin level. The weight she is carrying seems akin to Cushings...but no abnormal levels in tests. IT does help to read and learn. Everyone is very different. And finding a DR who is a pediatric specialist in endocrine disorders, specifically a neuro-pediatric endocrinologist,  is a struggle.  It's especially hard when you see your loving a spirited kid suffering.

[rumpled]

This is kind of a messed up thread - many stories so hard to follow a new one.

But many a pituitary patient is diagnosed with fibro, myself included.

[pixie03]

hi i had ablood test and has come back as high prolactin not sure how high was jus told i need another test this wk was shocked as they told me the results would take a wk and they phoned the nxt day,, i was diagnosed with fibromyralgia 6 years ago but  doing research and reading the comments on here i am wondering if i ever had that at all. im jumping the gun a bit as levels maybe normal tomo,

[pixie03]

hi i had ablood test and has come back as high prolactin not sure how high was jus told i need another test this wk was shocked as they told me the results would take a wk and they phoned the nxt day,, i was diagnosed with fibromyralgia 6 years ago but  doing research and reading the comments on here i am wondering if i ever had that at all. im jumping the gun a bit as levels maybe normal tomo,

[rumpled]

We would all wish for that miracle for you and for all, but... back in the real world,,, yes it is work.

I found the surgery easy to be honest. I have had 12, pit surgery was one of the easiest.

Hormone tweaking is a pain, but I have a decent doctor. That is important. I put all my meds in those 7 day, 4x a day things (I have a bunch!) so I take my meds in a consistent manner - that helps too. Work with your doc and pharmacist around any vitamins (for instance you don't take calcium and thyroid near each other) so you can get the most out of your meds - and after a while, it is not so hard.

But it is a new life, new body, new learning curve.

[Joytoya]

I have a Macroadenoma and most likely will have surgery in August, 2014. For those that have been through the surgery through the nose will you tell me what that was like and the follow-up?  The follow-up regulation of the hormones sounds onerous and complicated.  Of course I am just hoping for a miracle and that the tumor will magically disappear.