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.
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2 comments:
From what I understand, GH and IGF levels jump around all the time and it doesn't seem that much higher, so I wouldn't get tooo worried. But switching to a higher dose seems like a good idea anyway, esp since you have had a good response with 10 mg.
I always wondered how they determine what is normal!! I didn't know the range has changed over the years! Do you know if it got wider or narrower? I wonder if they determined that based on men or women, and what demographic? I heard that a lot of medical "normal" ranges are based on tests conducted on army soldiers in the 50's.
Hi!
I also believe that you shouldn't worry about your levels. They don't seem to be too high and if you are getting a higher dose it will improve for sure!!
Anyway, I have always been so far away from the normal range, that I never knew which one exactly is the "normal".
I think that the best indicators of our GH-IGF1 levels, are the changes you can feel, and everything returning to the way it was before...
All my best wishes
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