Today I went to see another endocrinologist at UCSF, Dr. Ku. I don't know if I should name names. Especially when I complain :-D They bounce me around between doctors a lot (fellows), but at least this one seemed nice and actually concerned. I can't say the same for one of the head doctors there, Dr. Tyrrell. He gave me my shots but generally seemed in a hurry to get me off his hands every visit. I can at least thank him for prompting me to plead with my primary physician to do the monthly shot (because they initially refused) - and now I don't have to travel to San Francisco every month.
Dr. Ku made sure to check all my vitals and actually asked questions, etc. I told him about my fatigue and headaches and he gave me the normal "don't know what to tell you about that" answer that I get (and expect now) from all of my endocrinologists. He told me the labs for the glucose suppression test came back with the GH at 2.1 and IGF-1 at 389. Back in 5/07 my IGF-1 was 370 and GH was 1.3. This doctor told me that they've changed the normal range so much on the IGF-1 over the years that it's not always a very accurate way to judge things because the range has been so skewed. This is the first time I've heard that one. He also said that he thinks my GH should be below 1.
If I'm to believe the readings are correct, then my levels have actually raised some since 5/07, even on the monthly 10mg Sandostatin LAR. So the doctor is raising me to the 20mg and I'll get checked again in 5 months. Hopefully I won't have issues. I asked how often I should have the MRI done and he said every 6-12 months. The surgeon who operated on me, Dr. Kunwar, hasn't followed up with me because they're so busy there. So the endo says they'll follow that. Well I should hope so! I can't believe that's not a normal concern for the endo with my condition. It's as if he expected the surgeon to follow up with me, I'd think that's an endo's job? Anyway, I know that "I" will follow up with myself. Dr. Ku also mentioned that just because my GH seems to have risen some, doesn't necessarily mean my tumor has returned. That's good news but I'll still be interested to see the next MRI.
Tuesday, December 18, 2007
Sunday, December 9, 2007
One Year Anniversary!!
I can't believe it. I just realized in 3 days it'll be one year since I had surgery. I guess I should do an update :-) I'm doing really well now (knock on wood). A lot has improved since surgery, and even more so since starting the monthly Sandostatin LAR shot back in April. I feel almost normal again. I have an appointment the 18th with my endo in S.F. to check my levels again.
After surgery my depression seems to have completely gone away, where before it was chronic (YAY!). I'm still fatigued daily, and I notice that I tire easily doing simple things like getting on the computer, socializing, and driving long distances. I get headaches and neckaches often. Tylenol and Advil are my friends. My BP is under control with meds (Micardis at the moment, switching to Diovan end of month). My GH and IGF-1 are controlled. Most of my soft-tissue swelling has gone down now. My nose is back to normal size. I've gone down about 2 ring sizes to a size 7 I believe, and I can fit in my 8 1/2 shoe again!! (Down from size 10). My weight is good at 135, but I still get extremely hungry at times. My hair still seems to curl too much but I've discovered the straightening iron. I have to stretch before any exercise now or I'm extremely sore afterward (I may just be getting old in this case, I did hit the 3-0!). And I notice I still have the beginnings of TMJ. Luckily I'm not in pain but opening my mouth is awkward at times, and I deal with the awful clicking sounds/feelings.
My biggest complaint is probably wishing I knew more how to control my illness, wishing my doctors could provide me with more information. Some days the headaches, neckaches, and fatigue are unbearable (I know my limitations better now, and when I need to rest - I rest!) I get juggled around between endo's in S.F., and I never seem to have the same doctor. All they seem to do is tell me my GH and IGF-1 and not much else. At the same time I realize I could be much worse off and I do realize how lucky I am.
I've received a lot of contact lately from other acromegaly sufferers (a pleasant surprise!). It's great to hear from you and swap stories. I hope things are going well for all.
After surgery my depression seems to have completely gone away, where before it was chronic (YAY!). I'm still fatigued daily, and I notice that I tire easily doing simple things like getting on the computer, socializing, and driving long distances. I get headaches and neckaches often. Tylenol and Advil are my friends. My BP is under control with meds (Micardis at the moment, switching to Diovan end of month). My GH and IGF-1 are controlled. Most of my soft-tissue swelling has gone down now. My nose is back to normal size. I've gone down about 2 ring sizes to a size 7 I believe, and I can fit in my 8 1/2 shoe again!! (Down from size 10). My weight is good at 135, but I still get extremely hungry at times. My hair still seems to curl too much but I've discovered the straightening iron. I have to stretch before any exercise now or I'm extremely sore afterward (I may just be getting old in this case, I did hit the 3-0!). And I notice I still have the beginnings of TMJ. Luckily I'm not in pain but opening my mouth is awkward at times, and I deal with the awful clicking sounds/feelings.
My biggest complaint is probably wishing I knew more how to control my illness, wishing my doctors could provide me with more information. Some days the headaches, neckaches, and fatigue are unbearable (I know my limitations better now, and when I need to rest - I rest!) I get juggled around between endo's in S.F., and I never seem to have the same doctor. All they seem to do is tell me my GH and IGF-1 and not much else. At the same time I realize I could be much worse off and I do realize how lucky I am.
I've received a lot of contact lately from other acromegaly sufferers (a pleasant surprise!). It's great to hear from you and swap stories. I hope things are going well for all.
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