Today is

My daughter is 19 years old.

about 4 years ago her periods stopped...looking for a possible cause blood work was taken and she had significant rise in prolactin levels.

An MRI was taken and a prolactinoma of 2mm was found on her pituritary gland.

A few months later she fell pregnant and had a beautiful healthy baby boy.....After the pregnancy prolactin levels were still high but an MRI showed that the tumor had gone ???

Since then (about 15 months) my daughter has gained about 30 kilos, tired all the time hump on her back (neck) a much more rounded face, and her periods have returned but they are never on time. She has also been treated for what they believe was postpartum depression.

Does anyone know if a tumor can just disappear? And what test would you ask for now?

After reading this web site I cant believve that her endo hasnt checked her for cushings.

Thankyou Dee

(MaryO note: Although Dee asks several questions, she didn't give permission for a link to her email address to be added to her bio)

Labels: bios, Dee, pituitary, prolactinoma

I am a 54 old wife, mother and grandmother.

I have been terribly ill for 17 months with adrenal insufficiency and a prolactinoma. I do not know yet if it is a nonfunctioning tumor or not, but I suspect so since I do not have any of the Prolactin symptoms. I will be evalutated soon for that.

I have gone the whole nine yards at Vanderbilt University Medical Ctr in Nashville recently. This is after 17 months of hell and seeing doctor after doctor. No one would listen to me.

Last July I think I was actually dying and was probably in adrenal crisis. I had hypertension and hypotension epsisodes with two ER visits with extremely high blood pressure and stroke symptoms. I was seen by many doctors who were all headed in the wrong direction. I was basically told it was female problems, stress, menopausal, etc. etc....you know the routine..many have the same story.

However..mine has a twist. I was so desperate for help I went to see a Mennonite Naturopathic healer in Kentucky. His name was well known of helping so many people. He not only seen his Mennonite Clan but also saw many "English" as we are called. He does Iris Iridology. This is a very old time practice that is about faded away. It takes years to learn and I suggest if you go to one make sure they have done it for years.

He looked into my iris with a small eye magnifying glass. He told me all the problems that I have been diagnosed for years, Fibromyalgia, IBS, Sleep Apnea, Insomnia, hypertension, hypotension, digestive disorders, and early pancreatitis. Now this was different than the doctors as my sister told me NOT to tell him any symptoms at all, much unlike the conventional doctors who heard all my symptoms. Then he really shocked me when he told me I had adrenal problems and something wrong with my pituitiary!!!!! He gave me natural medicines that helped some but I knew it was not the final ending to this problem.

I went back to my FP at the time and told him my horrible symptoms of flushing, anxiousness, nausea, dizziness, digestive problems, inflammatory pain etc, etc. He finally checked my norepenephrine levels were 624! He then did a MRI of my adrenal glands.....negative.

But then he went back into the service and left me holding the bag...no referral no recommendations. I was ticked. I had to search for a new FP on my own. Finally I found a FP in my own county that everyone said loved a challenge. He thought I had a carcinoid tumor or an adrenal tumor.

After blood tests showed several things he sent me to Vanderbilt. After my first appt. they tought the same thing. However tests revealed that my cortisol was lower than a 1. Barely registering. No wonder I was so ill. They did a MRI of my pituitary and found a 6 mm tumor..suspected to be a Prolactinoma.

So the Mennonite man was batting100%, conventional doctors 0%. Well, I know I still need conventional doctors so I can't beat them up too much.

However...why is it so hard to get doctors to listen...even my regular Endo missed all this last fall even though he suspected orthostatic hypotention? Men doctors are horrible, particularly for not listening to women and labeling them hysterical depressive menopausal ninnies!

Would love to hear from others please about their experiences too? Meds or surgery for Prolactinoma...what worked for you?

Email LaDawn

Labels: adrenal, bios, LaDawn, prolactinoma

my names sarah i am 26 i live in biggar saskatchewan in canada..2 years ago i was diagnosed with pcos, there were treating it and i was getting worse..

I started getting headaches and blurred vision almost everyday..So my gyno ordered a cat scan, when the results came in from that they said that they see a tumor but u need to get a mri done so they can have a better look, in the meantime i had blood test fro thyroid , prolactin ect..

Results from the mri showed i had a macroademia.. MY bllod test came back i had slightly high levels of prolactin, so they said u had a prolactinoma and put me on a surgery list to remove it, i got a phone call from my endo saying i didnt need surgery u just need to take dostinex and the tumor should shrink..

Well i was getting sicker i had to take sick leave because of work still no menstrul cycle headaches everyday, nausea, gaining weight like mad but hardly eating,seemed that the dostinex was making me feel worse i was getting upset because
the docs were looking at me like i was making things up, but really i wasent..

About three month later i was feeling terrible i ended up noticing a hump growing on my back and facial and back hair i never had today.. i also had tons of red strech marks on my stomach and my armpits and breasts,one day my mom calls me and says you need to go onto google type in cushing disease and read the syptoms, so i did, and i had every single symptom except for high blood pressure..

So i made a apt for my endo and asked her if it could be cushings , she said yes that sounds about right, i took a 24 hour urine and a dexomethane blood test and results came out that i had very high cortisol..Next i did the 3 day dex test, and yup sure enough it is cushings disease..

My endo booked me a apt with the nuero surg, who put me on a urgent list, twelve days later i had surgery..well my surgery was on nov 12th 2008..

I am still sick, still have bleeding in my nose and my nuero cant see me until feb 24th cause he is on vaca, i mean really tho i still havent even had a post op apt with him..

As for the cushings i am off of the steroids and feeling like crsap, some days i cant even get outta bed... I just had a triple bolus test done and i have high tsh and prolactin level, my apt is tues to discuss the prognosis yay what next, still have lost any weight well 5 pounds, still have a moon face, i will prob have the facial hair forever, but the sore muscles and headaches and nausea has got to go i am tired of being tired, but i am a insomniac so i cant even sleeo in the day..thanks for listening ..Sarah..


Email Sarah

Labels: bios, PCOS, pituitary, prolactinoma, Sarah2, surgery