Best avise I can give is expect this to be a long journey. I had started this due to low testosterone and fortunately my GP said instead of treating that lets find the root cause: I was diagnosed with an 8mm 8 months ago , started Cabergolin at .25mg twice a week with some side effects-mostely vertigo and dizzy that subsided after a few weeks. The dosage was increased one a month up to 2mg per week and the prolactin levels fell from very high (250 american measurements) down to 60 and stopped, so dosage was increased to 4 mg/week and have been increasing since and slowly working the prolactin down-now at 6mg/week and due for another increase soon. Side effects at this high dosage are the same with each increase then level off. Interesting to note that until Feb. last year the max. recommended dosage was 2mg/week but that was lifted and is now up to the Dr.'s discretion.
So be glad if you are getting good results at below 2mg/week, but be prepared for the long haul.

Hey Boys,
Davie, that's good news! these 'nomas grew over a long period of time so don't thing they will disappear quickly. Not sure is dosages are just higher in the states, my dosage is .5mg (twice a week) my levels have gone back to normal in about 6 months. Still having mood swings, but to be honest the biggest mental changes are sexual. Think about sex way more now and look at porn all the time (which I never did in the past) I had this path where I wanted kids, marriage etc and now I feel like I am on hold, it's hard cause I am with a wonderful woman who loves me very much and wants those things too.....but I've changed and feel like I am on hold and want to focus on my change.... anyone else feel like this? Anyways glad you guys are here, nice to know I can vent with someone. If you're ever in Windsor, drop me a line. On a side note, not to sound like I'm advertising but I do a podcast with a friend where I talk about my recovery, but it's more of a comedy story telling show, you may like it, lot's of bathroom humour, if you're into that sort of thing, site is www.shanetom.com

Cheers Bro'lactinomas
shane

Just did my 6 month scan. Tumor shrank by a millimeter or two. Radiologist said there was a plaque or scar if you will on it. It has something to do with blood flow.
Next the team at Hopkins will look at them on the 23rd of Feb.
I stopped my T shots cuz they were not helpful and pushed the prolactin back up out of normal range.
Having trouble finding my willey. LOL.
Just hanging in there.
HA! that was stupid, " cant't find it but i'm hanging". What a putz!
Anybody here have it yanked out? Is it still this roller coaster afterwards?
Anybody on antidepressants? do they help?

Just wanted to add that I started the hardest conversation about sex with my wife 2 weeks ago. I started with letting her know up front that I was in no way complaining or casting blame. I just wanted to ask her what she specifically liked, needed, wanted.
I told her how much anxiety there was in initiating, what I needed from time to time.
I was afraid to start it cuz i felt like i wanted a mediator in case something was misinterpreted. We just said from the get go not to get mad and to refraise if necessary.No fighting.
The tension in the house is way way down. Not a lot of resolutions but it was very helpful.

Hi Count, I can appreciate where you are currently at myself, Hang in there. I have been stalking these boards for a while inparticular this guys one.
My short story is I'm 38 was ok up until 2 years back...starting feeling achey, tired,no libido. MRI done and they found empty sella syndrome (my pit gland has been damaged/crushed) Ironically I was actually hoping for a tumour. You see at least they can reduce it or have surgery etc. The side effects of my damaged pit is Low T and High Prolactin and Hypothyroid.
Testosterone therapy for the last 10 months didn't really help as I got anxious/panic attacks. They have only now considered (at my insistence) they try cabergoline and see if my own balls start to work again. (especially after being shutdown on T therapy)

Hope you guys are well and enjoying those days with sunshine and gloss over those bad days.. I think the worst thing for me is that I don't know anyone else in the real world with this sort of problem..

I too have my own website about going through all this of anyone is interested it's www.mytestosteronetherapy.com If anyone would like a chat please just PM me

best wishes
Angrydad

Thanks for sharing Angry daddy. So i gather you have chronic pain as well? My docs seem to shrug it off and only want to talk about the gland. The tumor. Just makes me wonder what folks did 100 yrs ago. Booze and witch doctors I guess.
Whats empty pitt?

Hey Count! No worries! I do get sore joints and palpitations and just feel like a hypochondriac nowadays! Ache this, pain that.. Empty sella is apparently quite common (20 to 30% of autopsies of the general population apparently show the person may have had an empty sella ) But not had any symptoms. Only a small % of people suffer, Normally women.. Go figure eh!

Empty sella is where the Pituitary gland is crushed like a punctured football against the bone cavity in which it sits... the bone cavity is called the sella turka hence empty sella.. as the gland is crushed against the bone.

I am supplementing my thyroid and taking cabergoline. Just hoping that my nuts start to work again ;-)

I reckon 100 years ago folked only lived to 40/50 something. Perhaps they just accepted an awful quality of life?

best wishes

Hello all, notsure if this thread is active since there hasn't been a post for a month, but I can't find anywhere else.

I am male, 21 years old and was just diagnosed with a macro prolactinoma a week ago. I started having vision problems several months ago which eventually led to the assumption that I had a pituitary adenoma (non secretory). I have no other symptoms than vision problems but the tumor has been growing for about 6 years apparently, so who knows if I have a reduced libido, since I would have been experiencing reduced libido since I was old enough to have one at all. My prolactin levels were up above 4000, and the tumor was 7cm. From what I've read here, that is huge. On my MRI it shows the growth going from my optic chiasm all the way to the top of my spine. One carotid artery is completely surrounded, and the other only partially. I have been on Cabergoline for almost a week now (0.5mg twice a week). I have experienced some headaches but nothing too bad, and reduced energy/motivation to work. My endocrinologist said that I may experience vision recovery almost immediately (1-2 weeks) and I think I am, which is very exciting. After reading most of this thread, I am left wondering a few things:

1. Do the side effects from cabergoline get worse? or better? or stay the same?
2. My endo seems confident that I won't need surgery, while the neurosurgeon seems confident that I will. Does cabergoline ever get rid of these things completely? or will I be on meds for the rest of my life? I think I'd rather go under the knife than be on this stuff for the rest of my days.
3. Does anyone have experience with a prolactinoma of this size? I'm wondering how quickly I should be expecting it to shrink. I think my endo was intending to have bloodwork every two weeks to monitor dosage, and an MRI in a couple months to check shrinkage.

Hey SJ. We are here for you. I still monitor any activity on the site. Yes, my noma was that big, too. My libido had disappeared and my level was 896. (I am 58.) Six months of Cab got it down to 16 and the MRI showed the noma as 35mm, half as big. But the Cab made me really paranoid. I switched to Bromo, which may not be as effective, but has fewer side effects. I have another set of tests and an MRI pretty soon. It sounds like you have good docs, but it is a shame they can't screen for these things earlier. I guess they are rarely found in guys.

I have no complaints with my docs whatsoever; only good things to say about all of them. However, I feel as though as soon as they suspected a pituitary tumor, I should have been sent for bloodwork. That would have identified the problem months sooner. I have donated blood several times in my life, and I understand its not their job to test my blood, but if they had, we would have found this thing years sooner.


I'm into my second week of cabergoline now, and the headaches are still present, especially when I first stand up, but the tiredness seems less prevalent. don't want to be on cabergoline forever, but its hard to weigh surgery vs years of medication.

I started cabergoline in November of 2010. I have a 24x26 mm prolactinoma which is wrapped nicely around my carotid artery. Started off at .5mg 2x per week. Prolactin levels dropped from 2800 to 3! After punching a wall and breaking my hand during an argument with my son and freaking out at my wife because she was eating my ice cream, she insisted on going to my doctor and discussing our options. Neuro surgeon said surgery was risky, so doctor suggested reducing the cabergoline to .25 2x per week. Prolactin levels have increased to 28 and seem stable. Rage is not as prevalent as before but I still struggle sometimes. Even with the prolactin levels at a much lower level my testosterone levels stayed extremely low around 50. Had to start testosterone replacement. Right now life is what appears to be normal. Tumor has not reduced in size. I have hair growing everywhere! My wifes not too excited about the hair on my back! But is very pleased with the renewed activity in the bedroom. I've been married for 22 years and lost a good deal of my life to this freakin tumor!

Hey boys, I won't really know my noma has reduced in size till the fall. Been on Cab for 7 months now, the ragey, frustrated feelings have subsided, but hormone urges have certainly gone up. Probably going to talk to a councillor soon just to talk about these changes, haven't been a real sexual being my whole life and now dealing with new urges and my chronic pain finally going away after 8 years.
keep in touch
shane

OK, here's a weird one I want to check with you guys. I've just had what can only be described as a migraine for the first time. Was in the middle of taking a show when bam it hit me! I've been trying to rip my head off all day due to the constant throbbing pain.

Has anyone else experienced this? Mt wife called NHS Direct for me and they said it could be a side effect of the Cabergoline that I'm on, but as I've been on it for nearly a year and this is the first time it's happened I doubt it.

I just wanted to see if anyone else has had similar issues while on the drugs? I get normal small headaches now and then but nothing to this scale.

Dave.

No headaches , just some mild ones from what I assume is clenching while I sleep due due chronic pain. I have noticed some times ( a couple times a month) I have trouble with my eyes focusing. Usually doesn't last more than a day. May be due to shrinking noma, removing pressure off optic nerve, or medication?

I have a rather large macroprolactinoma (60mm+). I'm not sure if its just my particular situation, but I was advised to go to the ER immediately if I had a sudden onset massive headache as it is a good indication of hemorrhaging and is a serious medical risk. Again, I'm not sure if that's just because of my situation and I just recently started Cabergoline, but I would be worried and contact medical support (even if you just phone in) immediately.