Care bear,

I know Sandostatin and Somatuline have the same mechanism of action, but maybe you would tolerate Somatuline better. I am just getting ready to start on the drug, so I am hoping not to be sick. I hope you find a speedy resolution! By the way, I understand how unsettling thinning hair can be. After I had my babies my hair fell out like crazy. I saw a big pile of hair in the shower drain and cried for about an hour! It didn't help that my hubby ask me if I would go bald..uuuggghhh! I found that supplementing my diet with Biotin helped a lot. You may also want to have your thyroid re-checked. I just said a prayer for you to have a good outcome!

Im on somatuline autogel..before drug thick curly hair that grew so quickly..hairdresser would roll his eyes..at the beginning I had hair falling out..and yes it kind of sets you into omg..some members on here have had hair loss from having surgery..also drug yes cab sandostatin and my one..also it could be down to thryoid..stress..seen that one with exam stress of hair falling out..I asked my hairdresser and they said they have know someone loosing hair from the birth of a child,, menopause...but it grew back..mine does not grow quicker now which relieves me because it shows that things have slowed down and the textured went from course to silky..

For me (on cabergoline) a lot of the black ones fell out to be replaced by white ones.

Oh, OK, maybe I am just ageing.

To be serious, I think I am losing more hairs now than I used to, though I still have plenty (just the wrong colour).

I do notice that my hair does not need cutting now every 3-4 weeks as it did before my GH dropped.

John

Thanks for the quick replies everyone.....I'm one of the weird cases where I can't have surgery because the tumor is undetectable. I knew right away something was wrong and was diagnosed within about a years time. From testing my doctor knows it is coming from my pituatary. I originally tried Somatuline injections for two months but my numbers weren't coming down enough, so then went to Sandostatin and have been gradually increasing to 30 mg. All that being said (sorry so long) Im worried to mention anything to my doctor because I feel like he wants to pull me off the meds.

Since I am one of the unusual cases my doctor seems to think my acromegaly will magically go away. I saw an independent specialist in LA and he said I can hope at best to be controlled. So now I don't know which is worse the disease or these meds. The hair loss is quite dramatic. I have a twin sister with brain cancer who lost most of her hair telling me I may need a wig soon :-/ Anyways, thanks for listening....I'm just really frustrated right now.

I have experienced hair loss also. I take cabergoline though. I try to style my hair and cut it shorter so it doesn't look like it's thinning. Not sure this is working though. My heart goes out to you and kudos for seeing another doctor. Acromegaly doesn't just go away. Best you can hope for is to keep it under control. Try to stay positive. This is a lonely disease and nobody knows that better than we do. :-)

I had surgery a year ago to remove the pituitary tumor. A few months ago my IGF-1 levels rose again so i started Sandostatin.

After the surgery (maybe 3 months later) my hair started falling out in handfuls, it was really upsetting, but like a lot of people with acromegaly I had plenty to begin with.

Around 3-4 months after it started falling out it started growing back. now I have all these 3-4 inch pieces that fly around but at least they are back

i am told this is the same thing that happens after having a baby - the growth hormone level drops dramatically and then your formerly thick, fast growing hair, stops growing that fast and for some people it falls out

For most people it grows back to keep your fingers crossed that this will stop after a while /

Good luck

Hi,

I started on Sandostatin 20mg in 2009, and switched to 30mg after a year, and been on it ever since. Experienced the same symptoms as you, but they did go away after two years with the exception of the hairloss. It took a while, but I think the body gets used to the substance.
I'm very curious to know if any other men here experienced hairloss, because my hair just keeps getting thinner and thinner, to the point where I am almost bald, and it's really taking its toll on me. I already had some hairloss prior to starting Sandostatin, but taking the injections definitely accentuated the thinning. Sounds stupid, but this is really what depresses me the most about this condition.

Thanks everyone for all the replies. It's really hard to be going through all of this, but it's comforting to know that there are people who understand and relate. I'm currently on 30 mg sandostatin and one pill of cabergoline 2x a week. I wasn't sure if it was my meds or stress (my sister and myself). I'm trying not to be vain about all of it, but I miss my long hair. I already don't feel like I can control my body most of the time and this was just so sudden and unexpected. Anyways thanks again everyone. Hopefully we will all find some peace soon.

I was on 40mg every 4 weeks for 2 years. I've been on the 40mg every 3 weeks now for 3 years. With the higher doses I've noticed more GI symptoms especially bloating and stomach discomfort, constipation, weight gain, and noticeable hair loss (hair cleavage on the back of my head that I cover with a bobby pin). I do also notice some blood sugar related issues right after getting injections, although I haven't been tested. I get sugar crashes easy and notice I'm thirstier, but it goes away in a few days.

I'm just about 4 months post op and although my igf-1 and GH are still high, they're trending down and I hope it continues that way. So no drug therapy as of yet. However, about a month ago I started to lose my hair - BIG Time. Scary. I've also developed a nasty headache in the last week, almost feels as bad as it did pre-op. My most recent MRI, just a couple weeks ago, shows everything is clear and the surgeon said he got it all. My other hormone levels are all within range. I'm hoping what I'm experiencing, hair loss and headache, is some kind of reaction to the rapid decrease in GH. My saving grace, probably due to the tumor to begin with, is that I still have plenty of hair to lose before it becomes noticeable to anyone besides me.