high prolactin no tumor

[horselip]

Hi Dr. Prevedello-
I am a 47 year old female. In January 2006, I had an adenoma removed transphenoidally from my pituitary gland. Prior to surgery it was thought that the adenoma was a prolactinoma. Presurgery, my prolactin level hovered around 200. The pathology report indicated that the growth was a Rathke's Cleft cyst. So it was theorized that my prolactin level was elevated due to mass effect. After surgery my prolactin level went down quite a bit, but it never normalized. It is still elevated and runs around 60-70 nowadays. I have annual MRI's and there is nothing to indicate that I have a prolactinoma. I am panhypopit and take rGH, hydrocortisone, liiothyronine, levothyroxine, and DDAVP. I have opted not to take sex hormones.

I guess that there could be small prolactinoma somewhere. But if there isn't; how my prolactin level could remain elevated if I am panhypopit? This is not an urgent question but it is one that has been bugging me. If you have any insight I would love to hear it.

Thanks
Horselip

[Daniel M Prevedello, MD]

Dear Aloha
I think at this point it is more important for you to figure out if you are really leaking in order to avoid new episodes of meningitis.
Can you collect fluid for analysis?
The prolactin elevation is not a major problem if you are not having symptoms and the MRI does not show any tumor. However, that may be the explanation why your "drive" is decreased.

[Daniel M Prevedello, MD]

Dear Horselip

Did you have an mRi done recently? When were your last MRI?
With your story and all side effects from medication, if you have suspicious tissue in the sella you may have indication for reoperation.
If you do have CSF leak as well, then it should be taken care at the same time.
Are you really leaking?

[Daniel M Prevedello, MD]

Dear Horselip

I think you are very smart. I have to agree with you. When the gland dies the prolactin level goes down as well. You may have a residual prolactinoma. However, they are treated by medication and surgery is rarely required. Have you been in any medication like bromocriptine or carbegoline?

[Daniel M Prevedello, MD]

Great. Let me know if you have any further questions in the future.

[horselip]

Thanks-
I agree! When I wrote to you I had no intention of the leak issue getting sucked into the discussion. I know that it is important. I have an appt now with the new Neuro in early March so we shall see if he is able to handle the diagnostic workup for a leak or tell me if I am safe to fly to California and go to my current team at Stanford.

[horselip]

Aloha from Hawaii-
Hiya Doc- RE leaking
My last MRI was in July 2010, which happened to be the same time-frame that I had my last CSF leak patch surgery. The July 2010 patch job was the second patch surgery that I have had. The patch surgery was done by a very good ENT surgeon. A pituitary surgeon was there just in case they needed to go into the sella and he dealt with the lumbar drain and the yellow dye. After the surgery I came down with elevated cranial pressure. Then I was allergic to the sulfa in Diamox and was put on Topamax for this. I think I sprung a leak a few months back but now it is affecting my ears, if such a thing can happen. Also had another bout of meningitis a few months ago, oh joy. I have been working on referral to a new neuro who just started practice on the island, as I am afraid to get on a plane!

[horselip]

Thanks Doc-
Yes,
I took Bromo and Dostinex. We even tried off label use of Requip (a Parkinson's med). I had horrid side effects, which is why I had the surgery. Of the three: Dostinex was the best of the worst for me. So then you think that stalk effect would be out as a culprit?

I will bring it up with my neuroendo, though. As that was over five years ago and maybe things will be different this time around. I might be able to get away with a very small dose too.

And yes Julie it can be a stinking disease. But, I would not be afraid of hormones. You are just replacing what you do not make on your own. I just opted out on the sex hormones because I take SO many meds and am dealing with a cranial CFS leak too. But I am rethinking the sex hormones because I miss my libido!

Horselip

[Julie251]

That's really a stinking disease, isn't it!  I think 20 years have been wiped off of my life because of it and because most doctors know practically nothing at all about it.  How big was your tumour?  What do all those drugs you're taking do?  

I would probably opt out of the sex hormones too, because I fear hormones of any sort.

My marriage even broke up chiefly because I lost virtually all drive.  Without drive, every encounter was like rape.  So the serious part about women losing this drive is that they are destined to spend the rest of their lives single unless they can meet a guy with the same problem. I'm too afraid to even flirt anymore for fear of running into the same situation (and that's extremely upsetting because I love men).  Thought the Cabergoline might change things it appears not.