Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
Well, i am post surgery almost one month.....the sodium imbalance issue is resolved.....i am off hydrocortisone, and my body is producing its own cortisol and sodium....levels are good! The surgeon said i had a "little bit" of diabetes insipidus, and this may still be causing me to urinate a lot, but this seems to be slowly resolving....
I continue to feel a bit better each day, but i am still going slow....i started working half time but i need to come home and rest....i continue to feel positive....i feel like some of the swelling of joints has gone down and i feel less fatigue than before the operation...
Heres my question: my surgeon did a one day post op test of igf-1,hgh, and prolactin. Result was igf-1 227, (nonfasting) hgh .03, and 0 for prolactin (only trace amounts)! We did this testing because the 2011 consensus guidelines (which i found and read here!) recommend one day post op results because they have a high predictive value for future reoccurence or nonreoccurence of the disease. Obviously, we were very happy about the results (prior to surgery,scores were hgh 2, igf-1 500, and prolactin 30).
Last week i did an igf-1 and the number had gone up to 323! Why would the number go up if they got all of the tumor? Is is just bouncing around? Will it go back down again? Was the number low because I was on drugs from the surgery?
Any thoughts?
Ledgy
I continue to feel a bit better each day, but i am still going slow....i started working half time but i need to come home and rest....i continue to feel positive....i feel like some of the swelling of joints has gone down and i feel less fatigue than before the operation...
Heres my question: my surgeon did a one day post op test of igf-1,hgh, and prolactin. Result was igf-1 227, (nonfasting) hgh .03, and 0 for prolactin (only trace amounts)! We did this testing because the 2011 consensus guidelines (which i found and read here!) recommend one day post op results because they have a high predictive value for future reoccurence or nonreoccurence of the disease. Obviously, we were very happy about the results (prior to surgery,scores were hgh 2, igf-1 500, and prolactin 30).
Last week i did an igf-1 and the number had gone up to 323! Why would the number go up if they got all of the tumor? Is is just bouncing around? Will it go back down again? Was the number low because I was on drugs from the surgery?
Any thoughts?
Ledgy
It's funny for me to read this as I write and remember how badly I freaked out when my IGF-1 levels started going up. Then again, they were up to 1800 at one point...
something similar happened to me too. First IGF-1 result was much lower than 3 months later. Endocrinologist has explained me that hydrocortisone can influence IGF-1 levels (lower them) and that results after 3 and/or 6 months post surgery are much more accurate and that I have to wait and repeat testing and then we will discuss all options. It's not necessarily that this is the reason in your case because pit. gland also needs a lot of time to start working normally again.
Like Suzanna I was scared too when my IGF-1 levels started going up and I immediately called my endo. Only explanation from endo has calmed me down a bit. I was so thankful for his soothing words and that he was there for me. So I totally understand how you feel right now, we all need closure.
Take care,
Harmony
Harmony, thanks for the explanation about hydrocortisone reducing igf-1. This might explain my miraculous day after level of 227!
Ledgy