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Prolactinoma
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Prolactinoma

For the past few months, my prolactin levels are high and the doctor did ultra sound and confirmed I have PCOS even though the report questioned about that. I had to ask for an mri, so the doc worte me an mri. The mri results show that I have microadenoma .My doc wants me to go to a neurologist but the neurologist's office people told me to go to and endocrinologist. I don't know where can I find a good endo or nero-endo for that matter. Please advice from where I should start my search.

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657231_tn?1390151580
The neurologist is correct - they do not treat pituitary issues.

PCOS has to be confirmed with the ultrasound - did you get a copy of the report? and with lab results showing abnormalities with testosterone and with LH and FSH. Other tests should be run like sex binding hormone and really all the androgens should be run several times.

Even though the MRI is *normal* I have heard that many times if the MRI was not done correctly - it should have been a dynamic pituitary MRI (with and without contrast with contrast given while images taken so smaller lesions have a better chance to be seen). Smaller lesions can fall between the 3mm slices and simply put radiologists can miss them.

A good neuro-endo can be found at a university or a larger hospital. There are links in the health pages that list some docs and it will take some calls (some endos will say they treat pituitary and you get there and they really do diabetes mostly) so you have to really find a pituitary center. Make sure you have all your records and labs and all and do research. Time of day matters for testing. Lab error is a factor.

You have to be educated so you know if you have a good doc or a endodud.
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Avatar_f_tn
I have the copy of ultrasound and the labs for female hormones but none of them were abnormal. My MRI is not normal, as I stated above, it showed I have microadenoma. My prolactin level is increased from 60 to 100. My first test for prolactin was done in february and then in september. I will look into the health pages. Thanks for the help.
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657231_tn?1390151580
So much for my ability to read... sorry about that!

I would question the PCOS with no abnormal hormones. I had pituitary issues AND PCOS - which made them, of course, only want to think PCOS... but it was really the pituitary.  Prolactinomas are the most common of pituitary tumors, but not the only abnormality - so you have to get all the pituitary hormones checked. Even though your prolactin was elevated - it can be elevated by other hormones - even thyroid. So it has to be checked out carefully. It can be treated with medications - have they started you on one?
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Avatar_f_tn
Thanks for responding, rumpled. Some doctors does want to conclude on the wrong information!!  I don't know what are the other pituitary hormones that need to get tested. I have Hashimotos hypothyroidism since 2006 and I'm on medication since then.
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657231_tn?1390151580
First, make sure you get a copy of all your labs, all the time. Then, read up on pituitary sites and read up on some of the resources in the health pages. The general info and lab stuff you need to bone up on - lab error can really mess things up. ACTH degrades in minutes - that test and the lousy techs messed me up for years.Time of testing and even keeping things cool matters.

So you have to know so you know the docs are doing a decent job or it is time to walk away and try for another.
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Avatar_f_tn
By health pages do you mean forums related to brain/pituitary in this website? Correct me if I'm wrong. I'm visiting pituitary websites for information to get myself educated, so I know what my doctors are doing. Actually, my periods stopped 6 months back, and I had to force my doctor to write the MRI. I have my lab results. My doctor never tested me for ACTH.
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Avatar_f_tn
Sorry, I figured out where the health pages are!
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657231_tn?1390151580
It is not so clear... we are not supposed to post links in the forum so we put them there.

It took me forever to learn all this stuff and go back and get all my testing - I think if I had been on the ball I would have been diagnosed faster.
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