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Prolactinoma

Jun 06, 2010 - 3 comments
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prolactinoma



OMG! The continuing saga of What the heck is wrong with me??? Well, a while back I was told I was going into perimenopause early and I was put on biodentical hormones. I really didn't completely believe in the whole situation and couldn't afford to buy them, so I didn't continue on them. Well then my equilibrium started to get out of whack I was dizzy, and I began to hear ticking in one ear, so I went to see my PCP. She thought it was allergies.

Then my periods started to become irregular and I went to see my Gyne. He confirmed what the holistic doctor was saying that I was indeed going through the change already early. Ok. Then about 10 days later I started lactating from one breast!!!! WHAT THE HECK IS GOING ON???? I have never had children. I have not had sex in a very long while. This scared me, so I did some online research and found that there can be many causes the most common cause of which is a Prolactinoma.

It was over the holiday weekend when this all took place, so I got in touch with my doctors on call Gyne doc. She pretty much confirmed the idea that there is a great possibility that I have a Prolactinoma, which is a pituitary tumor that increases the prolactin hormone in the body, which creates the breasts to produce milk. Luckily, these types of tumors are always benign and can be shrunk (usually) with medication.

I went for a blood test yesterday so I will know for sure some time next week. If the test is positive I am sure the next step will be an MRI. I also read that Prolactinomas can cause Osteoporosis and Osteopenia, which may explain why I have such issues with my bones and DDD and what not. My sister also has issues with lactation, but I am not sure it's related?

I am beginning to feel like I am starting to get to the bottom of my problems and soon I will really know why I have been so sick. If anyone knows anything about this condition, I would be much appreciative if you could add your stories here. Thank you for reading. :)  

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by kitonthemoon, Jun 28, 2010
Hi,

I haven't the engery to check in for eons.  Just read your journal and really feeling for ya.  I most sincerely hope this is indeed the culpit of all your problems....

It does sound logical that you might just have hormonal problems...I know and admire your determination fo find and answer for yourself until you are absolutely satisfied with and get on effective treatment.  You're way too young to be suffering so much.

How is school?   are you still going at it?   Wishing you the best.

Sending your loads healing huggies,


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by bridgeovertroubledwater, Aug 17, 2010
I have heard of this and it is definitely to do with the pituitary gland.  I have had issues concerning hormones myself but not lactating.  My thyroid has been a problem with getting the right balance and this has led me to get doctors to finally look into other issues like insulin resistance (metabolic syndrome)  and my blood work came back within normal ranges.  Now, I just saw another GP and he did send me for an X-Ray of the pituitary gland and I received a call from the office this morning regarding my results are back since yesterday and to see my GP about the X-Ray.  They say no hurry however I will be seeing him on Thursday cause he just came back from holidays and is quite busy with all his patients trying to get in to see him.  My theory is he does this so he can get booked up with patients and then will go on another holiday and do this again.  What a way to get your patients to come in to see you.  Anyway,  my symptoms are satiety, insomnia  and no sex drive libido has gone.  I was on a vegan diet for almost 3 months and couldn't lose weight yet it was good for finding out that it does help with pain for fibromyalgia.  As soon as I eat sugar, I get more sypmtoms and puffy hands and feet the next day from just my diet change.  I have a feeling that I will need some kind of hormonal supplements however not sure till I see the doctor about this.  Good luck with your issue and hope this helps a little.  

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by emilia105, Feb 16, 2013
it sounds like Prolactinoma indeed. I am 34 years old now and i was diagnosed with Prolactonima about 17 years ago. I had very much the same sympthoms as you.  I lost my menstrual cycles all together, i was lactating, feeling depressed, no energy, low sex drive, loosing hair, double vision.  Had MRI's on annual basis. They first put me on parlodel.  I was up to 42 pills per week of parlodel and i was sick as a dog, vomiting and stuff. Then Pfizer launched Dostinex and i started taking that medication 1 pill per week, which luckly made me feel better and i no loger had to take parlodel which made me so sick.  I had mixed results with Dostinex, i did get my period back for a little, then it stopped again.  it did bring my prolactin down to 60's - 70's but did not bring it lower.  I was on this medication for 10 years. I was at that point ready for a brain surgery as the medication did not work at all for me and i was desperate to have a normal life.  no surgeon wanted to operation me because my tumor was too small .... BUT the medication didn't work SO what do I do???? i have written to a doctor in Pittsburgh (Dr Amin Kassan)  and he contacted me and said he will operate.  I had my surgery in 2007, all went well. Tumor turned out to be a cyst which explained why medication was inaffective.  however my prolactin continued to be elevated (at little above 100's).  at this point I just try to stay healthy, exercise to build my bone mass, eat healthy.
How are you doing? Are you on any meds?

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