Welcome! I am still awaiting surgery but I can tell you that I have lost a total of 24 lbs over the last 1.5 years. I was diagnosed with a prolactinoma and took cabergoline for over 1 year. I was also started on Synthroid -- make sure that your endo checks the Free T4 as mine was low and causing weight gain, constipation, hair thinning and bad fatigue. The TSH is the usual screening test and with pituitary tumors it may not be the best way to check for hypothyroidism.

I also follow a weight watchers type app and exercise three times weekly.

It turns out I have acromegaly so thus the surgery. I hope I don't gain it back! But make sure your doctor continues to follow ALL of your hormones as these things can change over time.

Good luck!

Eliza, you were vague on the other details that are usually associated with this Beast that need to be considered in your decision. How is your thyroid and adrenal glands functioning? What other meds do your doctors have you on already?

The complexity of this conditions is far reaching...the pituitary controls your whole endocrine system and if it's out of wack than just about everything else is also. which has direct effects on you metabolism, apatite, sleep patterns, emotions,, fatigue factor, stamina,, mental state, sex drive, coordination.....you name it ....it's all on the battle front.

I went from 195-200 to 280 in my 15 year battle with the Beast due to many of the effects of this battle. I would say fatigue, pain (muscular and joints) and the emotional aspects combined were the biggest culprits. It's really hard to exercise when you're hurting, dead tired and depressed.......eating becomes a comfort zone and that equals weight gain.

We have to adapt and battle this on many fronts and it takes time, persistence and determination. I have found that the the beginning Tai Chi for seniors helps me with the muscle and joint pain. Eating healthy and avoiding certain food types helps with the fatigue and riding my recumbent bike 30 minutes on alternating day with the Tai Chi is my golden key. After my hip surgery last May (total replacement), part of my rehab with the bike and a host of isometric exercises helped me kick start the program..........since then I've dropped 30 lbs and I want to lose at least another 40. That's my goal.

The thing is, this is hard enough for most of us, when our levels are normal.........elevate them and it's dang near impossible to merely function. If it was me (and it is....I've been on injections since 2000) I would take the shot. The hidden damage that an elevated Human Growth Hormone (HGH) causes is not pretty and it's forever for the most part. I hate the shots and today is my shot day.............but I hate even more what it does to me if I don't take the shots.

Oh and just for the record, I've had 2 transphenodial surgeries, 1 Gamma Knife procedure, 1 Oceptal Lobe Craniotomy, 1 total hip replacement and 15 years of shots.......

Thanks KatesGram and Lifespalette for your advice.

The acromegaly has been mainly affecting my metabolism hence the weight gain. My thyroid was said to be fine but KatesGram, I'll take your advice and be sure to get my doctor to check my T4. Good luck on your upcoming surgery, KatesGram!

Lifespalette, you're a real trooper! I can't believe that you've been through so much and still going strong. It's only been a couple of months for me and I'm already feeling discouraged. I've restricted my diet to only vegetables with very little protein because I read a study that protein can increase IGF-1 levels. I also try to run everyday for at least one hour.

I guess there are still some more questions to ask my doctor before I think about starting the medication.

I have one more question, after you started taking the medications, did you notice any changes to your body? Did any of the effects of the disease reverse with the medications?

Weight Gain, broadened shoulder, teeth no occluding properly, oily skin, peach fuzz on face, darker hair on arms. Even though I was treated with a less effective med cabergoline a lot of these disappeared. My wrist is so much smaller I need to have my watch band sized.

Im on medication and the simple fact for myself is Im being given a life..I feel very grateful that there is this option..

Eliza....our battle is an ongoing one for life and it's easy to get discouraged........been there, done that and it didn't solve a dang thing. The way I figure it, we can give up or we do what we can. The choice is pretty simply......many years ago, someone shared with me this thought, "pain and heartaches in life aren't options, they come with the journey.............misery is a choice." I've hung on to that for almost 35 years.....little did I know back then just how profound an impact on my life later that would have.

After starting the medications I had some improvements......the surgery was my key. I saw and felt many improvements after that, but this thing takes a toll on our bodies and the accumulation of effects over the last 15 years is very present today........cognitive, memory and coordination skills have diminished to the point I'm now on full disability. I retired early due to the Beast back in 2009. When I drive (not often) I rely heavily on GPS to keep from getting lost..........I'm okay on the normal routes (doctors, grocery store, HomeDepot) but most everywhere else I wait for my wife to accompany me........where once, I could work all day on a renovation project now I have to break up my task in about 2 hours increments with extended periods of rest in between and when I feel the wall of zero energy approaching it's done.

We adapt........we accept the realities and we adapt. Only a fool beats their head against the wall and expects anything other than a bloody bruised head.

Eliza--
Shortly after surgery (which was 'successful') my levels started to rise. My doctor, after the 3rd set of labs & as many months, gave me the option to take Cabergoline to try to bring it down. But, he was not emphatic & gave me the option to wait until the next appt in 3 more months. As it was December & my mother's health was failing at an accelerated rate, & I did not want to live on a drug, I declined. But, 3 months later, the IGF-1 climbed more. At that point, he said he thought the number was too high for the Cabergoline to arrest it, and I went onto Somatuline.

Sooo, I might suggest that you ask your dr if the Cabergoline is an option. It doesn't have a huge history of success, but my pit dr is quite an expert at this & thought it a possible solution to the trend. In hindsight, I should have tried it. He felt it wouldn't work given the increase & time passage.

Now, my levels are the high end of normal on Somatuline, whose dose has been up and down, and the # doesn't change. I kind of regret not trying the Cabergoline when he suggested it.

theres a member on cabergoline who couldnt get on with somatuline..for myself I am on somatuline and refuses to take cabergoline..we both made a pact to watch if each other had any odd effects..if they wish to tell their story.I will let them its their journey.so each has a good and bad side to drugs and one I think it takes a bit to ge youre head around you could be on meds for life..I am the one who is so grateful for somatuline but will not dismiss any of the others as we are all unique..for myself..what did this drug do for me..Im NOT surgery option..so I can see the difference from being med route only..from the first shot..I could feel what it was like to not feel inward intense heat..I knew what it was like to feel cold..after the other shots..my hair thinned..it went from course to soft and my hairdrsser stopped Joking he needed two lots of colour or two appointments for me alone..(he never charged me double) thankgod...I never had any more skin tags grow..my nails stopped growing at an alarming rate..rashes across back disappeared..I stopped snoring like a piglet..fingers slimmed down and was not so puffy..I didnt ache..periods were very heavy and they went into a regular pattern..I had very hign bloodpressure and an alwful grey tinge colour to face..my bloodpressure went down and colour came back..I lost weight and yes kept it off..I got many comment of people dont realize I not as young as they thought I was..I started to be able to string a semtence instead of having a mind of fog and wandering off because I was distracted so far this list of fours is a big yes for myself..so whats the bad side..I guess my moments of hyperness..one thing I do wish is I had sense to have taken this drug at room temp because it made me very sick if not..also Im still a terrible singer..LOL guess I cannot have everything..I also have been able to rebuild my confidence back..which the conditon had stripped away from me..I felt not smart enough..looks..th best one of all was when the tumour shrunk and my eyesight went alot better..so am I a fan of somatuline yes I am..I am very grateful and no Im not being paid by the drug company...

Thank you all for your comments and your stories. It's easier to understand things when I can see how real people have been effected.

What's hardest for me is that I just started college last year and that to on a swimming scholarship. I want to be able to continue my education but being in my early 20s, I also don't want to have other health issues down the road from the drug. But then, there's also the effects of the disease on my health without taking the drug.

Thank you all again - I have a lot to think about... I'll also ask my doctors about cabergoline - I don't recall them mentioning that as an option but its something I'll ask about.

Cabergoline..you have to have youre heart monitored ..as this drug can have side effects

Gab is used for people with a prolactinoma tumour..you might like to read some discussions from that support group on ds..

I went on cabergoline after having nasty side effects from Somatuline, I have been on it for about five years now, with mild side effects after the first few weeks.

You need to have your heart valves monitored initially, but there hasn't been a history of heart valve damage at the dosage you get for pituitary tumours -- the dosage for Parkinson's is often as much in a day as I take in a week.

The noticeable effect initially is from the effect that cabergoline has on a man's prolactin levels -- prolactin suppresses sexual desire so if your prolactin levels were a little high before treatment, suoppressing that, you may notice a bit of a boost in that area when you first start cabergoline! That settles down though.

I am on 1.5mg cabergoline twice a week. You need to titrate upwards slowly when you start so your body gets used to it.