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Revisiting the weakness issue
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In response to Minniechat: Things are in the confusing stage. I still feel brushed off about the weakness though things seem a little better today. It is so hard to figure out what is going on. Everytime I get a good day or two I get my hopes up. My IGF-1 was not maintained at an appropriate level with Sandostatin (good numbers immediately after the injections but high numbers again by the end of the month) so I have been on somavert for the past week and a half. I think I'm feeling better. The endo decided to take a serious look at the high parathyroid numbers and sent me to see an endocrine surgeon (Did you know that such a person existed?). I ended up doing things backwards and saw the surgeon before the scan. The scan had been ordered but the machine broke. I am scheduled for the scan next week. The surgeon seemed to be recommending parathyroid surgery (Of course, he is a surgeon and would interprete everything as a surgical problem). There has been alot of wavering among different physicians. The problem is my PTH is very high but my CA levels are at the high end of normal limits or slightly above and I have osteopenia rather than osteoporosis which is stable according to the DEXA scan from last year. I do have kidney stones but I also have a congenital kidney problem that could lead to the stones. The question is whether the elevated PTH levels will eventually lead to permanent kidney damage or other problems. The surgeon notice my difficulty rising from the chair in his office and mentioned that my weakness could also be related to the high PTH. My local (nonpituitary center) endo was strongly against parathyroid surgery unless I had more problems. I'm not sure I want to wait until I have significant problems to address what is probably another adenoma in the parathyroids. I also think that the local surgeon is not aware of the advances in parathyroid surgery. The Pituitary Center endo stated that he may have to revisit the MENS 1 issue even though the genetic testing came back negative. He said that he was not ready to ask for more testing but was just keeping it in mind. I have also been dealing with a reactive hypoglycemic issue. Note that Sandostatin can make hypoglycemia worse. I finally saw a dietician who had done her homework and was able to speak intelligently about the glucose problems associated with acromegaly and Sandostatin. She stated that my diet was too low in protein and that I needed to eat something (small amounts) every 2 to 3 hours. Yeah! the eat all the time diet. This has made a tremendous improvement in how I feel -on top of that I am finally losing some weight. Life is complicated - esp. if you decide to take an active role in your treatment decisions. |
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