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,
Sorry for all of the questions, I'm even starting to bore myself now....!
My only real symptom of acromegaly is the fatigue that I experience. I've had this for a few years now, however, it doesn't seem to be consistent. For example; I have many days when I physically don't have the energy to function. On odd days I feel good and have enough energy to see me through the day to the extent where I wouldn't believe anything was wrong other than a little sleepy. Over the last month or so I've looked for patterns in the way I feel, trying to link it to my diet, the amount of sleep I get, feeling stressed etc. but so far haven't found any way to control it.
The only thing I can loosely link it to is my diet. By skipping breakfast I seem to be able to cope better throughout the day. I'm not an unhealthy person anyway, but cutting out sugar and fat also seems to help - but not to the extent that I could definitely put it down to that.
Am I on to something here, or is fatigue associated with acromegaly completely random?
Thanks in advance,
Tom
Sorry for all of the questions, I'm even starting to bore myself now....!
My only real symptom of acromegaly is the fatigue that I experience. I've had this for a few years now, however, it doesn't seem to be consistent. For example; I have many days when I physically don't have the energy to function. On odd days I feel good and have enough energy to see me through the day to the extent where I wouldn't believe anything was wrong other than a little sleepy. Over the last month or so I've looked for patterns in the way I feel, trying to link it to my diet, the amount of sleep I get, feeling stressed etc. but so far haven't found any way to control it.
The only thing I can loosely link it to is my diet. By skipping breakfast I seem to be able to cope better throughout the day. I'm not an unhealthy person anyway, but cutting out sugar and fat also seems to help - but not to the extent that I could definitely put it down to that.
Am I on to something here, or is fatigue associated with acromegaly completely random?
Thanks in advance,
Tom
I was diagnosed in October 2013, surgery November 2013. Four months out I still have no energy or get up and go. I was one that never sat still, now I can not make through the day without taking a nap for two hours. I get up and a four hours later I am crushing with no energy. I took my first injection of Somatuline today and hopefully that will lower my IGF to normal and get my life back to normal but still dealing with all the joints the disease has affected.
Ken
Ken - I hope the injections work out well for you. I'll ekeep my fingers crossed....
Jokey - Definitely agree on the sleep pattern, as for cutting out sugar....I can't lie I have struggled with that but so far so good ;)
Lifespalette - I guess we kind of hang on to the hope that it's down to something we eat that may not agree with us or dyhydration. I know I certainly was.
Idahomom72 - Are you on medication to control IGF?
Ahead of my treatment, the hospital gave me a home-based sleep monitor kit to use overnight. After they looked at the results their comments were that I only potentially had very mild sleep apnoea only --- they could only detect snoring from the overnight monitoring. It was considered so mild that they considered it probably unsuitable for any treatment -- but, boy, did it feel bad to me! I was so often wake up in the night gasping for breath.
there's a standard sleepiness test which they will give you too http://www.britishsnoring.co.uk/sleep_apnoea/epworth_sleepiness_scale.php
Luckily, this sleep disruption fixed itself the evening of my surgery.
John