Are u taking any meds. Are u in remission?

Sandostatin for gh, synthroid for low thyroid, hydrocortisone for low cortisol, plus a handful of other meds for related conditions. Growth hormone and IGF never totally controlled. I went about 20years untreated and undiagnosed.

Wow, I have wondered if it's ok to be on meds longterm. Ive been on cabergoline for 6 years and octreotide for 6 months. Expect to be on both forever and Im 34 now. Glad to read you have done relatively well! What part of the world do you live in? Any natural health tips do go with the meds?

I've been taking these meds for about 30 years and am still around. The 20 years of untreated acro have probably caused the most problems. The only things I have done besides taking meds are exercise and diet. And I think those 2 things are very important.
I've lived most of my life in Texas and now am retired on the Oregon coast.

Gapeach23, What do you think of the cabergoline? My endo gave me some before surgery. I told my surgeon and he scoffed at it! Made me feel kind of weird! ha ha

I don't have any experience with cabergoline. Presently I give myself an injection of somatuline depot every 6 weeks that seems to work for me. Like everything, it does have its side effects.

waterman I see u switched from sandostatin to somatuline. I'm starting somatuline this week. How long has it been since u started? How are the side effects? Is it better than sandostatin in your opinion?

The main reason I switched was the ability to self inject at home. I don't see much difference in side effects or total results. I've used the somatuline depot for several years now. Self injection is not for everyone.

Ok thanks for the info. I'll get my 1st one at my doctor on Monday then maybe I'll do my next one

I was just taken off cabergoline after 8 weeks it was horrible for me. No energy, hair falling out, nausea, headaches and even hallucinations I was seeing flier fly lights in the dark I thought I was going crazy, been off it now for 3 weeks it took 2 weeks to get back to normal.

Good to know. I've been on medications that made me really crazy too. A little heads up really helps.

I have been on Somatuline Depot 90 for almost 4 years now. GH immediately normalized but IGF 1 which had gone from 989 to 400s starting rising again- MRI shows minuscule tumor remnants. Side effects of extreme tiredness, headache and tooth pain have not been as bad as when I first got injections but stomach pains, loose stools and flatulance have gotten worse. In addition last year I was diagnosed with sinus bradycardia and now I have a pacemaker. Of course that’s an uncommon side effect of somatuline. Has anyone else had this side effect?

I have a very slow heart rate also. Low 50's. It's hard to say what causes it since I take 3 different blood pressure medications as well as Somatuline Depot. I've also had a heart valve repair.

Did you consider radiation as a follow up after surgery ?

There weren't many options back in 1987. After 3 surgeries in 12 months I decided I was done. I would live with those results. Surgical results have improved tremendously since. I would consider all options today.