Prolactinoma

Hi All - first time posting here but I'm a bit baffled so I'm just looking for some insight from those who have gone before me so to speak. I am a 31-year old female who was diagnosed with a 11 mm prolactinoma in 2001. After meeting with my endocrinologist we settled on a medical route for treatment. I started on Dostinex (cabergoline) and within 4-6 weeks my menstrual cycle had returned. I continued on the medicine until 2007 when I became pregnant with my son. During that time I had one follow-up MRI that showed the tumor had shrunk but was still present. After I delivered my son in 2008 (via c-section due to breech presentation) I had a follow-up MRI which revealed the tumor was gone leaving only scarring behind.  Fast forward to the past year where I have been having numerous odd symptoms crop up that are leaving me a bit confused.
1. Anxiety issues - started in Feb. of 2010, went on Zoloft (and Ativan until Zoloft kicked in) which worked fine. Weaned myself  off over the summer but in early October had a relapse, started taking Zoloft again, been 2 1/2 weeks and anxiety is still present although reduced somewhat. Not having panic attacks - just continual churning anxiety. Both times these anxiety "episodes" have occurred has been a few hours after I exercised and haven't exercised beyond those two times b/c of the anxiety that sets in (but hours later, not during, feel fine during).
2. Weight gain - had put on 50 lbs. prior to being diagnosed with the prolactinoma but through diet/exercise and the reducing of the tumor, lost the weight. However, since the birth of my son I never lost the baby weight but have added on about 50 more lbs. I am now at 245.  What is odd is that unlike the first major weight gain, this time it is much more focused on my trunk region...a lot of abdominal fat than before.
3. Very tired after exercise - like I need to take a nap. Never feel energized afterwards, no matter what kind of shape I'm in.
4. Still tired and dragging after 9+ hours of sleep.
5. Feel like even minor cuts are slow to heal
6. Periods are regular but heavy
7. Hair loss (not sure what is normal but it seems like a lot)
8. Legs feel like they have bricks attached whenever I go up steps or walk quickly
9. Frequently cold (especially feet) when everyone else is warm
10. Feel somewhat like I'm living in a fog...can't remember things as well, words don't come to my mind like they used too, forget how to spell simple things sometimes (never used to be like this)
11. Frequent feelings of lightheadedness when I move my head suddenly
12. Frequent pins and needles - feel like I'm always needing to adjust how I'm sitting/lying down b/c my legs fall asleep. Happened the other day when I got out of bed quickly to attend to my son and both my legs were totally asleep - fell right on the floor. Comical kinda but wondering if it is something more.

I'm scheduled for an MRI for next week and then a follow-up consult with the endocrinologist. I just have feeling that something isn't right however, sometimes I wonder if it is me just seeking a reason for the anxiety. However, prior to two years ago I never experienced it despite having periods of stress. It seems to me that there is the potential for the tumor to have come back in a different place since my prolactin level is normal at 8 or perhaps it did some damage before leaving affecting some other pituitary hormones? I'm just not sure what is going and I'm sure that after I meet with the doctors and have the MRI some answers will be shed. But that is a week or more away and I'm not very patient I guess...I'm just curious to know if anyone has light that they can shed on this?  Thanks!

[enzymelover]

Hi! Welcome to the forum. To me, your symptoms sound like hypothyroid and hypoglycemic issues, both of which could have been caused by your pit tumor's effects. Your endocrinologist should be able to help with this, although successful treatment of hormone imbalance isn't always so easy!

My son had a pituitary tumor (actually a craniopharyngioma) that did a lot of damage before it was surgically removed. He suffered from substantial hormone loss - thyroid, testosterone, growth hormone, and cortisol. He had all of your symptoms except for the female issues and the weight gain. Now that he has been on hydrocortisone for a long while, he has gained a lot of weight, however.

It does sound like you need thyroid hormone replacement. Please let us know what your endo says.

[rumpled]

I'm wondering if you are more like me - I was diagnosed with a prolactinoma (actually they kept saying no about my 6mm lesion) but my tumor disappeared and alas, it was hyperplasia and I actually had Cushing's - and your symptoms are consistent with that. The abdominal fat is a sign of high cortisol. Have  your doctors tested all of your pituitary hormones or just your prolactin? How is your ACTH?

You may need hormone replacement - like growth hormone which is the first hormone usually that is effected by any damage and thyroid like enzy noted - but I suspect more is going on and your docs are oblivious. An MRI can only show so much - it is the lab work that really is what you need.

[Laska18]

Thank you both for getting back to me! I haven't had any blood work since February and they only tested the simple things. Prolactin was the only number I remember b/c of previous issues. Haven't had ACTH tested...yet.  I thinking that the meeting with the endo. will result in a lab slip for a lot of blood work and if it doesn't I'm going to request it.  I guess I was just niave that when the previous MRI came back clear with just some scarring that I was home free. I thought I was done with this stuff but now I'm really wondering if there isn't something more going. We'll see - I'll update when I know more. Thanks again!

[lbedford]

I'd like to suggest xanax instead of the zoloft. I'm having those same issues, anxiety, stress, crying, anger (to rage instantly). I refused zoloft because I took it after an auto accident and found it weakened my bladder muscles and was a son of a gun to wean off of. I find xanax does a great job. I'm on .25 mg 3 times per day.. I don't know what I 'd do without it. I have all of your sympoms except #12, I have the bad leg pains sometimes, and I can't tolerate heat, but cold doesn't bother me, although my feet ache if they get cold (around the house). Also, my writing is illegible at times. I'm seeing an endo now.. I'm on my knees begging for the pit tumor surgery.. he's almost giving in. I have the big belly.. had tummy tuck, now it presses so hard against the muscles.. I can't really eat that much (I'm starting to lose my appetite anyway, BUT gaining weight). Big white hairs growing around my mouth and chin, lost my eyebrows, lost hair off my head, fat face, fat neck, gained 50 pounds.. I seem to gain more if I don't eat, lost sense of smell, sense of taste, big ridges on figernails, atrial fib since January, diagnosed now with diabetes, also have fatigue, bladder pain, spinchter muscle pain, sinus infections, feeling icky days, can't sleep at night, but can fall alseep in the middle of a tv program, and on and on it goes.. I've been working on getting help for about 18 months.. been through 2 endos..now on my 3rd. The neurosurgeon had already sent me for the IPSS last October when that endo said I didn't have a pit tumor and stopped the neurosurgeon dead in his tracks... I made an appt. and went to have my MRI read and I had an 8mm pit tumor at that time (I wanted it confirmed).. I cried and cried because that stupid endo stepped in. Since then my symptoms are now getting serious i.e. heart problems and diabetes and high blood pressure.. I'm getting more persistent on what I want...just do the surgery!! The neurosurgeon that had me ready for surgery taught the pit tumor surgery in the State of Washington before coming here. He said I had Cushings after his routine of questions, tests and MRI results. It's just at that time I had the WRONG NEUROENDOCRINOLOGIST!! I was heartbroken, The Neurosurgeon  told me at the time that all my symptoms were reversible after surgery. I have had every cushings symptom there is.. my new endo yesterday finally agreed with high cortisol, but now I have to do the 3 consecutive salivary and the 1 mg dex test with blood drawn at 8 am. I am begging this endo to schedule me for surgery... I want this damn thing out before it's too late, if they get it now I can recover, if they wait... well, things sure have speeded up this last year!!! I'll do anything, beg, plead whatever. He has explained how serious this surgery is.. I'm to the point where I've suffered so much and am so miserable that I'm at the end of my rope. I'm at the early stages of diabetes... so that makes me all the more anxious. I told him take it out and do a biopsy on the tumor... then he can deal with the replacement hormones if I need them. I'm not giving up this time and he isn't real hard to deal with, he listens, explains and listens again. He wants to make sure I understand about the surgery, but hey after an IPSS, I think I can handle it. It will be like after my tummy tuck, I came out laughing, talking and felt sooooooo good!! I'm ready for GOOD BYE PIT TUMOR!!!

[rumpled]

A clear MRI means ... not much.  The radiologist could have missed it, the MRI could have been done incorrectly for pituitary (it needs to be dynamic which is a technique, not a machine), the lesion fell between the slices which are 3mm - there are so many reasons so eh, testing is the real thing and even that can get screwed up. Oh and medications like anti-depressants and BCP etc can mess up testing. So they are so nice to put you on it and then you can never test correctly again... they are treating you per symptom without finding a source. Bad idea in my book - it never worked for me.

Take someone with you to appointments who can advocate for you - and get the testing you need. Read up - we have to be smarter than the dang docs, which is not hard as most of them are not up on pits.

Lbedford - the surgery can be cake - the risks are if you have an inexperienced surgeon. Ask how many surgeries he has done. Make sure it has been over 500 and 50 that year. Then feel better - the risks are usually anesthetic. But the surgeon is near very sensitive nerves and veins so a not good one can kill or blind you (seen it, sadly).

You will need replacement after surgery - the pit is very unhappy after being wacked after surgery and you need to wean off cortef but you may need other hormones on a permanent basis depending on the skill of your surgeon and the tumor. So tumor and surgeon are the factors. I could not wait for mine to come out. I wish I could get this recurrence out...