Tuesday, November 19, 2013

Change In Treatment Plans On Hold

I went to see my current endocrinologist with my list of symptoms that I think are caused by problems injecting Sandostatin, and/or by taking too high a dose. He basically told me he didn't know what to do with me. No surprise there. I knew when I started seeing him that he'd only treated 4 acromegaly patients. My GH and IGF-1 are very good, both within normal range on 40mg every 3 weeks. And it's a noticeable improvement over the 40mg every 4 weeks. So technically my treatment is good, but I don't feel good with my current negative symptoms. He referred me to Stanford to see Dr. Katznelson. I'd already planned to see Dr. Katznelson a few months ago, but I've been putting off the visit. I hate to have to change my treatment, or to be suggested treatments I don't agree with. Not to mention it stresses me out to drive out to the bay area. My endo did lower my Sandostatin dose to 30mg every 4 weeks to see if that is causing my problems. But I didn't realize my primary doctor's office already had 2 months worth of medication on hand. So I had my 40mg injection yesterday, I'll get the 40mg injection in 4 weeks. Then I may go down to the 30mg, unless I happen to get into Stanford before then and have a different treatment suggested by Dr. Katznelson. I also got my enrollment form sent in for Sandostatin's mobile nurse administration program. I hope that helps. Thinking about changing treatment, and a friend currently planning to do Gamma Knife makes me wonder how many acromegaly patients respond well with radiation. The thought of losing pituitary function and needing HRT worries me. But having acromegaly symptoms uncontrolled by medication is a worry as well.

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