Hi all,
just come across this thread, very interesting and I hope you don't mind me jumping in. I started with headaches Aug 2010 which just wouldn't go, had the usual diagnosis of migraines etc finally got referred for an MRI scan on 30/12/2010 and found 3cm macroadenoma with hypopituitarism which was haemorraging and compressing on the optic nerve. Bit of a shock to start off with was going to have an operation in feb 14th (typical, valentines day!!) was all gowned up ready to go in wife (heavily pregnant) and family all there upset and consultant neurosurgeon came into my room which I thought was just to take me down and said there's been a glitch, my prolactin levels were too high at 6400 which maybe indicated it was a prolactinoma. so was straight onto cabergoline, also went to see endocrinologist all my hormones were up and down so here's the list of medication I'm taking:
Cabergoline
Tostran
Hydrocortisone
Levothyroxine
Simvastatin
and for pain relief for my severe headaches OxyNorm in the day and Amitriptyline at night!
Also for my anxiousness Diazepam.
Hormones seem to be levelling out, had an MRI scan last week which was the 6 month mark after starting medication so waiting anxiously for results.
As a result of taking all my medication I'm very very tired all the time, suffer from hot flushes and have been told I have abnormailties in my liver. Also waiting for heart scan (echo) results. Also I've had a mineral bone density scan which shows my spine isn't 100%. I suppose that is a lower form of osteoporosis.
Are any of you suffering from severe fatigue because I find it impossible to work at the moment. Any advice would be greatly appreciated! Just remembered while looking in the mirror put a 21lbs on in weight is this also a symptom?
Desperate to feel normal again and it would be nice to talk to somebody else in my position.
Regards.

The meds make you crazy and they just want you to keep popping the pills.Anxiety,mood swings ,irratable,I get ocd not sure if its related but it gets better when i lower my meds or stop taking them .My life was destroyed.Marriage done .I havent even mentioned the compulsiveness.

I used to take 10 mg of bromo a day.side effects at that dose was insanity.now i take caber twice a week .Compulsive hypersexuality gone irritable anger bouts still there.testosterone still low ,hypothyroid high but normal tsh 3.89.I thought reading that everyone else is screwed up too would make me feel better but truthfully it doesnt bring back the relationships or my family.WIFE HATES ME and reading everyone else has mood swings and anger just makes it feel hopeless...Hopeless sucks. Does anyone ever feel emotionally numb ?Narcissim? selfishness?When i get to cut my meds in half will the mood swings get better?Is it to late for me to just have it removed?

I too have destroyed relationships and stressed out to the limit the few left that have supported me.
Bad decisions and the financial loss has been tragic.

Been off the meds now for about 2 months but never was too compulsive on them. Lots of anger and mood swings and anxiety, paranoia and scary dark thoughts. The phsyical end was and still is Chronic fatguie and insommnia,

I will have a surgery date in the next few days or so for november.
My compulsions came on recently after being perscribed clonazepam for moderate to sever anxiety after getting off Cab and bromo. weird....
I dug my rearend in a financial hole once I saw how much out of pocket surgery was going to cost me, It freaked me out and I got desperate. having very little funds and all the loss in the past this has created prior to being diagnosed . bad choices.

If I continued those meds it was just a short matter of time before I would be in Prision, locked up in the pysc ward or dead. Why some can tolorate these meds and some it makes crazy?

I feel for you and I hope all of us find some peace and healing dealing with this tumor. I am done with it ,and want it out of my head.
My memory is shot and concentration is difficult.
I have the Low Testosterone, thyroid issues and hypogonadism.
Depression and a crappy attiude has not helped. I tell everyone that I am doing he best I can. This is not hopeless for us but just do your best.
God Bless,

good luck.I will look into surgery next week.

Doing the best I can isnt good enough.ANXIETY is bad now,Any drama or disappointment at all sets me upset or angry.I have drama when I am screaming for security.....Dont want the meds anymore,or the tumor....When they diagnose you they describe the meds and the effects like you are taking a advil a day for the rest of your life.....NOT EXACTLY

Wow. am I ever glad i found you guys. for years now i have been gaining weight steadily and more rapidly as the years went by. and for years my libido has been declining to nothing. A year and a half ago my eyes started to fail me. I was sent to a specialist to check my eyes. I was told i had miopic degeneration. over a year went by and i went into my Regular Eye Dr. and was ready for him to take my drivers licence from me because i had gone so blind. Other things that were happening too were extreme thirst and constant sleeping. my wife at this point was very angry for many reasons that now i see are just symptons. anyway the Dr. says i think you have a tumor. that afternoon I Saw a nuerologist. 2 days later had an MRI. a week later saw a nuero surgeon. a week after that an endo. now I take dostinex. my sight has gone back to normal. Praise the Lord! My emotional roller coaster has been bad. I am thank full my wife had not left. but i has been very difficult for her and the kids. the swings between rage and crying make me crazy. taking Prozac for that now and se3ems to help but may be early to tell yet. reading all your post has validated my life a little. some times my wife thinks im just blaming my Tumor for everything. I think it is the cause of a lot of crap! looking forward to staying in touch here. thanks.

My wife just doesnt care....She has a certain way she should be treated and SHE has let me know she is done with my hypersexuality and losing my temper.Well now that I know my expectations surely I will be cured.

Dan, Don't give up hope my man. I hear where you are coming from and completely understand. I am going for surgery Nov 8th and will post here the post op experience.
Myself, like you, could not deal with what the meds were doing to every aspect of my life. I had to stop them and make the hard choice to go the surgical route.

Join or visit the Pituitary network asso. http://pituitary.org/intro.aspx

Lots of info and top rated surgeons listed on that site.
I hope this helps in some way and know you are not alone with all of this. I agree it is hard to maintain a positive outlook when the meds seem to take over.
God bless and keep posting here for support through this.
Peace and healing for you.

I was in your shoes a few months ago Dan. I opted the surgical route. I'm still feeling as you describe, but I don't know if my labs are normal yet. If they are and I'm still feeling like this, then I will go nuts.

Anyone here have issues with fertility after being placed on testosterone replacement? That would be my next step if labs are abnormal, but I'd like to have kids in the future...

Hi Everyone,

I have posted on here before and found everyone to be a great help. I have been on Cabergoline for my Prolactinoma for about 5 months now. After 3 months, and after having more blood tests, my endocrinologist adivsed me that my Prolactin Levels had slightly decreased, but was still very high.. He doubled my dose, and after being on that for 6 weeks I recently had blood tests and am awaiting the results. My testosterone is extremely low. Do any guys out there know if High Prolactin levels can cause premature ejaculation? Something that has been affecting me for several years now. Im only 23, but have also been on a medication called Solian (amisulpride) for Depression. Google that and you will find that that medication can elevate your prolactin levels. After having the MRI, and finding out that I have a prolactinoma, the doctors arent sure if it was the Solian causing the elevated Prolactin (Which is causing all the problems) or if it is the actual tumour secreting prolactin. It could be one, it could be both. Im just glad i realised something was wrong. My sex drive was very low,I was gaining weight, and i didnt feel like other people my age (very little facial/body hair, interest in women and most of my mates having girlfriends. Havent felt/ noticed any changed since being on the medication so you can understand that I am nervous in getting my results. Thanks for your time.

Squaks88- Looks like we were diagnosed and started Cabergoline around the same time. However, I didn't figure out I had a physical problem until I was 33, so yes, be glad you found it early. Make sure you get the lab numbers from your doctor and do your own research (and share them with us), you are your best resource, your doctor is only a reference and adviser. Do you think you started taking the Solian as a result of the high prolactin? At your age, I was terribly depressed too. I would try to get off the depression medication, that's some crazy stuff. My best advice at this point is to make sure you stay very hydrated (I started drinking a gallon a day, i weigh 220lbs, and I feel much better), keep off the refined sugars and pray. Things will get better, keep your head up, focus on what's positive.

I've been following this thread for ages now and want to add my own experiences. I was diagnosed with a 12mm Prolactinoma back in April 2011 where my Prolactin level was 4299 (normal range being 86-324) and my Testosterone was 2.6 (normal range being 9.9-27.8). I've been steadily gaining weight since my early teens and have never had a massive libido which also has been decreasing, which is what spurred my appointment with my doctor to see what was going on. After lots of blood tests and finally an MRI to confirm the results I was diagnosed.

I've been on Cabergoline since May 2011 with the smallest dose I think is possible! After 3 months my blood tests came back, showing that my Prolactin level had dropped to 470 and my Testosterone had risen to about 8. I've just had my 6 month blood tests and my Prolactin level is now 370 and my Testosterone is now a healthy 16.5.

I've noticed a lot of changes over the last 6 months and the easiest way to explain them is like finally going though puberty! I'm growing hair all over my body now, can probably grow a beard if I wanted to now! I've also started loosing weight and my wife says I'm also developing muscles all over my body. I've had back problems for years which I put down to my weight but I now think it might have been weak core muscles. Who knows!

Anyway, I thought I'd share my experience with you all. I'm waiting for the results of a 6 month MRI to see if there is any change in the size of it. I can't tell you how my life has changed since I've been on the medication. I've been very lucky that I've got an amazingly supportive wife who has been very understanding throughout the whole process.

Thanks for sharing DavieG. One thing i have notice mor lately and as time goes on and certain paterns emerge. on my Pill days, Tuesday and Friday I am very emotional and that ussualy comes as anger. its been good to figure this out so i can avoid the people i love so i dont hurt anyones feelings. and best of all my wife has become more and more supportive. life can be good if you meet it on its terms. Work with what you are given and keep livin!

That sounds so familiar Charles! I usually find it's the day after I take my pills where I might feel a bit angry or paranoid. I'm learning to recognise the signs and having a supportive wife really helps, she usually spots first when I'm going into a 'downer', she tells me so I can try to work with it. Work too have been great about it.

I've been through the usual 'why did it happen to me' feeling sorry for myself. Now, I look ahead and try to live everyday as it comes, making the most out of each day.