Hi, I had an MRI in 2001 and it was totally clean. I then went for an MRI in 2005 for headaches and they found a 7-8mm pit tumor. I have had 2 or 3 MRI's since then, most recently in March and it has not grown any futher. I was treated with both cabergoline and pergolide for about 1 month each b/c my prolactin was elevated, (I was also on medications at the time which increase prolaction, so the source of the excess prolation was never known for sure) both of which I had dangerous side effects from and had to stop taking.
How can a pit tumor grow from nothing to 8mm in 4 years and then just stop? my endo is baffled by this also, and has kind of left things alone, exploring many other avenues for my symptoms, but I just can't let go of this one, esp with my increasing amount of symptoms.
Yes - they are typically not known to be aggressive growers. I had one stay the same size without treatment for years.
I would still stay monitored closely, and get ALL your other hormones checked as well, I had what was thought to be a prolactinoma and mine ended up being a that and a second tumor that was Cushing's. More symptoms means more testing - and maybe a new doc that er, knows pituitary? Is your current one a neuro-endo?
sorry for the brief post, I was in a rush at the time. I elaborated on another pit. forum and I am just going to copy and paste it b/c it is detailed and I don't want to type that much again.
So, here it is: (I know it's long, but so is my story -- believe it or not I made it as short as I could!)
I am aware that those two drugs inhibit prolactin production, but at the time of my dx, I was on a hefty dose of risperidone (for tourette syndrome). I had experimental deep brain stimulation surgery in 2006 and was able to drasitcally reduce and eventually come off the risperdone entirley. If you google risperidone, you will find that a common side effect is milk excretion due to increased prolactin. A lot of guys don't take it or stop becuase they develop breasts and it affects them socially. So in hindsight, the blood tests werent performed often enough, so no one really knows whether the risperidone or the tumor was the source. the only thing that gives some clue, is that my levels were not super super high like 500 or something but they were over 100. I was only on each drug for a month.
I am aware that pergolide has been taken off the market, but it was still in use in 2005, and the reason I actually had to stop it was becuase of caridac isssues. I ended up in the ER with SEVERE postural tachacardyia. Sitting HR=60 stood up and it went to 175. when the doctors concluded it was the pergolide I stopped it but the tachycardia still remained, though not as severe as while on the drug. I was prescribed a very low dose of beta blocker which took care of things (until a few months ago). I have tried to come off the beta blocker 3 or 4 times since the incident in 2006 and my tachycardia always returns. I am probably going to have to be on a beta blcoker for life becuase of that stupid drug. I asked my doctor about the drug being taken off the market and heart valve damage, and she told me there is no way it could have done anything to my heart becuase I was only on it for a month. So I dont know what the heck to beleive.
All I know is I cant let go of this pit. thing. Becuase of the brain surgery I can no longer have regular MRI's and when I do have them I have to go the the place I had the surgery, they have to shut my stimulators off and I think they calibrate the MRI machine differently becuase they are not able to get the clear, close-up images that they do with everyone else. They can still see more than with a CT scan though, which is useless.
I also know that I lost 70lbs between 2004 and 2006 and I have wached myself gain all of it back plus 20 more. I now weigh 300lbs (on my 5' 10" frame) and suffer with multiple endocrine related issued including but not limited to: increased heart rate (beta blocker no longer works like it used to), anxiety, easily fatigued, back pain, short rage episodes, social phobia, apathy, insomnia, headaches, appetite fluctuations, extreme carbohydrate and suagr/fat/salt cravings, fluctuating cravings for alcohol and nicotine (never smoked and drnink rarely) fluctuating blood pressure, blood sugar and thyroid levels, missed periods (despite the use of a BC pill to regulate my cycle, which has worked fine for 7 years) fluctuating contstipation and diaherra, lower and upper back pain, heartburn, cramps, spider veins (disgusting! I am only 23), fluid retention issues, abdominal weight gain, sunlight senstivity, you get the point, I'm a mess.
I was at the top of the world two years ago and now I feel like I am at dirt bottom. All my doctors are baffled by my symptoms. I have been to a nuerologist, a cardioligist, and endocrinoligist, a gynecologist and many others that I can't think of right now cuz I am too tired. But I can tell you that forums and the internet have been more of a source of information for me than all of them combined, except forums and the internet can't order tests for you! (unless u pay thru the nose and I'm broke).
So feel free to chime in if you think I am wasting my time looking into specific "conditions" (cushings and adrenal fatigue and carcinoid tumor and all the other useless things my doctors and I have explored) and let me know if you think the 8mm pit. adenoma (that they have been pretty much ignorning and that can't be imaged in detail) is just wreaking havoc on my body and is the cuase of all of these symptoms that have pretty much all surface in the last 18 months. (note: I have been tested for all major hormones, but most of the tests (with the exception of my thyroid and blood sugar) have only been done once)
thanks to anyone who can contribue to this ongoing "puzzle"! (I often wish Dr. House was real)
rumpled....cushings has always been a possilbility a I have been exibiting a lot of the symptoms of cushings and that is the one that my endo still may think I have, but my 24 hr urine cortisol levels have always been at borderline high...like 35-45. can I ask was your cushings tumor in your pit.? what was it secreting ACTH?? were your blood ACTH levels ALWAYS high or intermittent? and did you have a dex supression test/ACTH challenge test? was it positive. Cushings is a possiblity I still do not want to let go of. Are you a member of the cushings.invisionzone forums? I joined there and they have been a huge help for me...more than my endo has ever been...
please let me know the answers to these question as your situation could be very similar to mine, as they also initially though my tumor was a prolactinoma...do you like your endo? its so hard finding a good one that really takes care of you...they are all so afraid of ordering too many tests becuase the insurance compaines are at the top "watching over" costs....dont get me started on our medical system...it's too late :)
Cushing's can be adrenal or pituitary, or be from steroids, or rarely, from very very severe depression (the kind that puts you in the hospital).
I had the cyclical pituitary form, my tests were borderline often, my ACTH always normal (lab error for the most part, go figure), and I flunked every dex test out there - which is, sadly typical of most Cushies but the docs will not see that unless you see an expert.
If you get a better UFC - the HPLC, the range will end at 34, and it is more accurate, and will tell you more.
I ended up with both a prolactinoma and Cushing's - it is possible to have more than one tumor. My first symptoms were lactation, but my last ones ended up being more cushingoid, and I ended up having both discreet tumors.
It is very hard to find an endo - I had to travel far and wide and still travel for regular care, and only because he orders more tests. I am still complex and it is a mess.
Your med may or may not have contributed to the pit tumor, but still, they need to treat you - you need a better endo.. I know the pain.
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