Dear Fellow Acromegalics,
<o:p> </o:p>
I wonder if you continue to have acromegaly symptoms despite the wonder drug Somavert that controls IGF-1 well.
<o:p> </o:p>
I certainly do. I had pituitary surgery, then Gamma Knife. I was on Sandostatin, but it didnt work on me. I can do no more surgeries because of the tricky location of my residual tumor. Gamma Knife hasnt worked a bit after 2.5 years. Thank God, there then came along Somavert that has controlled my IGF-1 well. I have been on 15mg Somavert for 2 years. My IGF-1 hovers around 110-130. My endo thinks I should stay at the current dosage because my IGF-1 is good and my soft tissue has shrunk tremendously.
<o:p> </o:p>
The problem is that even though my soft tissue has been well controlled, that I no longer have puffy face, hands, nose, etc., my hard tissue has NOT. More specifically, my bone structure has still been growing and expanding. My body frame is getting wider, including face, shoulder, hip
I have to wear a larger size of clothes because my born is stretching, not because I am fatter. The most prominent indicator is that my jaw continues to protrude, that Ive become more and more under-bite. The bigger lower jaw not only affects my appearance, but affects my speaking. There are certain sounds I cant pronounce well because my teeth dont close properly. I already had jaw surgery years before; certainly dont want to go through that horrendous process again
<o:p> </o:p>
But then, why would my bone still be growing if my IGF-1 is good? Does IGF-1 control only the soft tissues, but not bones? My growth hormone level GH has been high, at around 10, because of the interloping relationships between Somavert, GH and IGF-1. Could high GH be the culprit? Or maybe I should increase the dosage of Somavert to lower IGF-1 further?
<o:p> </o:p>
I would very much appreciate your insights,
<o:p> </o:p>
Perplexed Jeannie 