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.
Hi all,
I'm hoping that somebody might be able to shed some light here. Quick description of my history; diagnosed in Feb-14 with an 8mm tumor. Surgery in Jul-14, huge improvement of symptoms, surgeon thought he'd removed it all. Told I'd not need any medication as all levels within range. So far so good. I've had a number of OGTTs since and suppressed each time. I just completed another one yesterday and asked to see my results of the previous test from Aug-15;
0 minutes
IGF-1 30.8 nmol/L (range 9.4 - 29.3)
GH 6.3 ug/L
30 minutes
GH 1.5 ug/L
60 minutes
GH 0.6 ug/L
90 minutes
GH 0.3 ug/L
120 minutes
GH 0.3 ug/L
In fact, all of my OGTTs look pretty similar but with this one the IGF has just crept over the limit. Prior tests have hovered around the 28.5 mark (max 29).
Anyway, because I have always managed to suppress the GH my symptoms have almost been dismissed and the various endos that I've seen have just pointed to these results as reassurance.
Is it a concern that my starting GH seems quite high? Is it a concern that my IGF is now out of range (albeit only just)? Hopefully I'll get the latest set of results within a week or two but I can't help feeling I'm not seeing the full picture here. Nobody has ever explained what the results mean or how they correlate to my symptoms.
Does anybody have any comments on these results?
Thank you
Tom
I'm hoping that somebody might be able to shed some light here. Quick description of my history; diagnosed in Feb-14 with an 8mm tumor. Surgery in Jul-14, huge improvement of symptoms, surgeon thought he'd removed it all. Told I'd not need any medication as all levels within range. So far so good. I've had a number of OGTTs since and suppressed each time. I just completed another one yesterday and asked to see my results of the previous test from Aug-15;
0 minutes
IGF-1 30.8 nmol/L (range 9.4 - 29.3)
GH 6.3 ug/L
30 minutes
GH 1.5 ug/L
60 minutes
GH 0.6 ug/L
90 minutes
GH 0.3 ug/L
120 minutes
GH 0.3 ug/L
In fact, all of my OGTTs look pretty similar but with this one the IGF has just crept over the limit. Prior tests have hovered around the 28.5 mark (max 29).
Anyway, because I have always managed to suppress the GH my symptoms have almost been dismissed and the various endos that I've seen have just pointed to these results as reassurance.
Is it a concern that my starting GH seems quite high? Is it a concern that my IGF is now out of range (albeit only just)? Hopefully I'll get the latest set of results within a week or two but I can't help feeling I'm not seeing the full picture here. Nobody has ever explained what the results mean or how they correlate to my symptoms.
Does anybody have any comments on these results?
Thank you
Tom
sorry I have just joined group and had my first OGTT yesterday. Used to be a scientist and still work I that arena.
I'd say you've got a really good set of test results there, hope mine are anywhere near as good.Good suppression of GH, showing your endocrine system is working properly for that suppression mechanism. I'd would not be concerned at all about the IGF result. Unless it moves very widely outside range it's unlikely to be of any concern.
Don't drive any thoughts from a single minimal difference result, be encouraged that it looks very normal.
cheers
John
Good luck with your OGTT results too - keep us posted!
Your doctor probably didn't say anything about the initial Growth Hormone reading of 6.3 because a person without Acrogemaly can have a higher number. It fluctuates throughout the day and many things effect it, like diet and exercise.
With all that being said, I do believe you can experience breakthrough symptoms of the disease while doctors considered your disease to be controlled. I don't think there are a lot of doctors who buy into this, but I know I have experienced it as well as others. It's trying to find a doctor who is willing to listen.
Hopefully i made sense and I wasn't too confusing.
I guess it's hard not to look for any little detail that may explain even the slightest of symptoms.