The only comment I can offer is that my lab changed the lab to which they outsource the IGF test, and the results from the new lab are much different from the prior lab. It might be worth checking if it is the same lab/same assay to make sure you have an apples to apples comparison. You are probably thinking of Sandostatin rather than Somavert for the monthly shots. The Somavert is a daily shot, and they won't go to that unless the other two don't work. My experience with cabergolne and sandostatin were not good, but if I were in his shoes, I'd also try the cabergoline first. Sandostatin caused my blood sugar to get worse and has nasty GI affects.

Thank you furkidmom. You are probably right. I was so in shock, I only heard 1/2 of what the doctor said, after he said this is worry some. So, what medicine are you on now? How is your igf?

I'm on somavert. Just did blood again, but Igf isn't back yet. Last timeit was 136. It had been 317. My range was about 70 to 230. But that was by lab corp. They changed to quest in nov but their range was different. So i dont really know how it compares. I was never tested by Quest when my acro was not being treated.

I have been coming to this site since my diagnosis in june of 2012. just joined today. I felt impelled to reply to your query. I had surgery to remove a 1.5 cm pituitary tumor on july 12, 2012. right away I felt better. I knew when I woke in recovery. blood work all normal.( I had been having symptoms aprox. 10 years begging for help, always told it was the change, etc.) I am an active woman, love the outdoors, try to stay fit, love staying busy. I was glad to finally have a diagnosis but scared to death too. surgery went well, no complications. neuro felt he got it all. about 2-3 months later symptoms returned. I knew before test it was not over. boy was I disappointed. a small remnant of tumor remained on my carotid artery. jaw, hip, neck, headaches all back.felt sick and nauseated again all throughout the day. all docs said no more surgery. saw endo in dec. went on octreotide(sandostatin) injections, short acting, 3 times a day. immediate relief of symptoms and that 15 pounds I couldn't loose fell off in about 2 weeks. I have tolerated it very well. made my constipation worse but other than that good. I just increased my dose slightly because some pain returned. my igf1 before surgery was 1044. now is 324. I am a 48 year old female. research well all med choices. of course talk to your endo. hope the best for you!

Cdpour, thank you for your reply. So, you will have to be on this medicine for the rest of your life? And you have to inject yourself 3 times a day? My husband freaked out the thought of having to give himself a shot once a day. So, in your opinion do you think there is a remnant of the tumor left? I feel there isn't a new one growing or his others numbers would be out of whack. His gh is .4. And all other numbers are great. He still has diabetes but he has been able to decrease his medicine. Thank you!!!

was that gh test just random? my last random gh was 1.3. my numbers were so good after surgery the endo used the word "cured" and my neuro was sure he got it all. when I came back after mri in dec my neuro called the radiologist that read my mri a "notorious over reader". he just didn't want to believe there I sat again feeling almost as horrible as before. it only takes a single cell left behind and may take some time to be detected again. of course it is always best to have the mri in the strongest machine(mine was a 3.0) and have a great reader. I listen to my body. I KNOW when things are not right. I let doctors put me off for years but no longer. I need to feel better on a regular basis. I hate shots too!! but the needle is small like a diabetic needle and I look forward to them now because they make me feel better.i also feel more in control doing it daily(instead of the once a month) if I need it a little early I take it. I don't know what the future holds, I hope this medicine shrinks my tumor on out of here. I just have to take it one day at a time. each of us are different, even with this disease. hang in there.

just want to add.... one of the replies mentioned the lab, yes, oh yes, make sure the same lab does the test every time. there are differences in labs. if the lab is the same, his igf1 creeping up is suspicious. keep in mind a lot of things can cause numbers to slightly increase. I feel I struggle most this time of year. I try to eat less meat, no dairy, more complex carbs. considering how all our hormones are involved, it is amazing we do as well as we do. don't stress too much, you will know more soon enough.

I am drug route not surgery how do I feel about the idea of taking this drug for the rest of my life its been a life saver..I was a mess and a monthly jab is nothing compared to the bad way I was in..I have levels tested and they have been eractic but even when they was higher the tumour had shrunk..I ask for a full profile I like to know how my thyroid is doing etc..I have had my gallbladder checked and Im tolerating well came back fine..side effects I am more concerned of the list on some every day medications eg a back pain one can have a scary list..so far my side effects have been the hyper occasions and when the drug has not been left to go to room temp and been administered Ive been sick..When they changed the needle that now seems to do more of a direct hit first one I had sent me on a rollercoaste of emotions..drugs over time for this conditon will improve but Im not complaining about taking a drug that is saving my life..thankgod for it I have a chronic illness but I have got myself to a very good place just have to keep myslf in top fitness..not get stressed or over tired ..

Did they tell him they thought they removed all of the tumor? If so, I would not take radiation right away....wait at least one year....my igf went down right after surgery, but then began rising....they wanted to do radiation, but I said no because I read here that it can bounce up for a while after surgery....sure enough after I year it went back down and it is still going down.....my latest result was 209!

If they did not get it all, or if your numbers do not eventually go down I would first try cabergoline to see if it works and there are no side effects....if not, take the sandostatin or newer version pasireotide monthly shots....that to me is better than radiation....

Yes ledgy, they were completely confident they got it all. It was 9mm and his gh dropped from 4.5 to 1.7 immediately after surgery. And the iGF went from 730 pre surgery to 285 six weeks after surgery then 312 3 months after that. Then the last time which was 3 months later was 370. Which the endo said was worrisome. It will be 1 year in July. We are testing again in about 2 weeks. If it has gone up endo does want to start on cabergolne first. But I am wondering if we should just get another MRI first, before he does anything. He was due to get the MRI in July anyway. It would just be getting it done in June instead. That way we know for sure if the surgeon sees anything. I definitely don't want to try the radiation first. We will try the medicine route first. I'm confused to why his gh is staying low it's .4. If the tumor is back. And he feels great. He works 12 to 14 hours a day. He truly is an amazing man :) when I first started this post I was in total shock. But now I am coming to terms that if he has to be on medicine for the rest of his life (or they find a cure :)) I'm just grateful they have medicine. Thanks for everyone's input. It means more than you know.

Hi if your docs agree that you can delay radiation I would follow the advice, and if they offer you Somavert jump at it, this brings down levels in most very quickly, if the docs agree that is, good luck

watch the video on youtube.com titled" Acromegaly. what's new. " very informative! its long, about 45 minutes but worth it. you are going to have some important decisions to make.

A couple of thoughts. My MRIS after the surgery were not useful because there was a lot of cloudy material in the way from the surgery and they couldn't get a good read. The first clear MRI was one year after the surgery. So I would wait and get one then.

Also, there is a lot of medical literature about the gh being low after surgery but the igf-1 bouncing back up....and then bouncing up and down after that. There are different theories about how that can happen, but no one is really certain. I think it is fabulous that your post glucose number went down to .4. That is really the definitive test for acro. I would really be patient and let the igf-1 number bounce around for awhile and take a wait and see attitude....the good news is that the tumor material grows real slowly, so you always have time to study the situation, and not hurry into anything.

Also, igf-1 numbers and lab results are notoriously unreliable. I would make sure that you are using the same lab, and the same testing assay each time it is done. I think it still might be unreliable, but at least you will know whether the number is going up or down.

If your husband is feeling better, that may be the ultimate indication that they really did get most or all of it, and he is going to be fine. I know it took two years for one members igf-1 numbers to finally stabilize.

In my case, my numbers are still shifting around, even 18 months after surgery, but they are trending down once again. I had a 209 result just last week. I still have some fatigue and joint pain issues but my researcher told me this damage is probably permanent. In general, I am doing very well, and I consider myself to be very lucky indeed.

Good luck! We are praying for a great outcome for you!

Thank you everyone! Your input means so much to me

Good news! IGF 1 rechecked down to 245!!! Thanks for everyones wonderful words of encouragement. And I'm not worried if it does rise again. He will just be put on medicine. Not the end of the word.