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.
Interesting article I have come accross. Thought you all might enjoy reading this. It lends clinical theory to debate the outcomes of such termed 'biochemical cure' in Acro patients. Alot of Doctors like to read into numbers and use that as their rationalization basis for how they think 'we' should be feeling, experiencing.
However, we've continued to experience what we do on a daily basis as orphans of this disease!
Wes
New theory on why cured acromegaly patients still suffer
New research conducted jointly in the Netherlands, Denmark and the USA proposes a novel theory as to why so many acromegaly patients apparently under biochemical control still have ongoing symptoms. If the theory transpires to be true, it could radically change the medical treatment for all acromegaly patients who fail to be cured by surgery alone.
The international team of doctors put forward a new paradigm or model for systematic acromegaly that affects patients who are treated with an acromegaly medicine thats widely used called long acting somatostatin analogues . According to the new theory, these patients could still have acromegaly in many parts of the body, other than the liver, because of the way this particular medicine works. Consequently, this remaining acromegaly is hidden as it doesnt show up in IGF-1 testing. It means, say the researchers, that these patients continue to suffer the damaging effects of excess growth hormone, even though their biochemistry indicates that they are in normal range.
The research team, led by Dr Sebastian Neggers of Erasmus University in the Netherlands, has named this peripheral or extra-hepatic acromegaly (i.e. acromegaly outside the liver). He claims that this peripheral form of acromegaly has, a significant negative impact on the quality of life of many patients who were previously considered to be biochemically cured.
The authors of the concept claim that, if their hypothesis is correct, it could mean that the medical treatment for acromegaly patients will require a significant update. In particular, their theory challenges whether IGF-1 is a reliable marker of disease activity in acromegaly patients. There is a need, the researchers believe, for newer measures of acromegaly to be developed, either genomic, metabolomic, proteomic, or others which integrate both hepatic and peripheral or non-hepatic forms of the disease. Such new markers of the disease could also help to optimise treatment on a more individual basis, especially with regard to quality of life issues.
Dr Neggers and his co-workers also conducted additional research indicating that if treatment with long-acting somatostatin-analogues is combined with another drug, called pegvisomant, this can successfully resolve the remaining, peripheral form of acromegaly. (See section on medication below).
However, the new theory does not appear in the new American guidelines for acromegaly, and Dr Neggers admits that, around the world there are some non-believers. One leading professor of endocrinology told me he remained agnostic about the hypothesis. The American Association of Clinical Endocrinologists advised me that they only included data in their latest guidelines that had achieved general consensus, but if the new theory proved to be accurate, it could appear in the Associations next guidelines.
Dr Neggers and his team are now calling for other scientists, clinicians and pharmaceutical companies to conduct further studies to test whether their theory is correct.
Sourced from Article Online;
New guidelines for the treatment of acromegaly, a serious growth hormone disorder
http://www.news-medical.net/news/20110831/New-guidelines-for-the-treatment-of-acromegaly-a-serious-growth-hormone-disorder.aspx
Published on August 31, 2011 - By John Danzig
However, we've continued to experience what we do on a daily basis as orphans of this disease!
Wes
New theory on why cured acromegaly patients still suffer
New research conducted jointly in the Netherlands, Denmark and the USA proposes a novel theory as to why so many acromegaly patients apparently under biochemical control still have ongoing symptoms. If the theory transpires to be true, it could radically change the medical treatment for all acromegaly patients who fail to be cured by surgery alone.
The international team of doctors put forward a new paradigm or model for systematic acromegaly that affects patients who are treated with an acromegaly medicine thats widely used called long acting somatostatin analogues . According to the new theory, these patients could still have acromegaly in many parts of the body, other than the liver, because of the way this particular medicine works. Consequently, this remaining acromegaly is hidden as it doesnt show up in IGF-1 testing. It means, say the researchers, that these patients continue to suffer the damaging effects of excess growth hormone, even though their biochemistry indicates that they are in normal range.
The research team, led by Dr Sebastian Neggers of Erasmus University in the Netherlands, has named this peripheral or extra-hepatic acromegaly (i.e. acromegaly outside the liver). He claims that this peripheral form of acromegaly has, a significant negative impact on the quality of life of many patients who were previously considered to be biochemically cured.
The authors of the concept claim that, if their hypothesis is correct, it could mean that the medical treatment for acromegaly patients will require a significant update. In particular, their theory challenges whether IGF-1 is a reliable marker of disease activity in acromegaly patients. There is a need, the researchers believe, for newer measures of acromegaly to be developed, either genomic, metabolomic, proteomic, or others which integrate both hepatic and peripheral or non-hepatic forms of the disease. Such new markers of the disease could also help to optimise treatment on a more individual basis, especially with regard to quality of life issues.
Dr Neggers and his co-workers also conducted additional research indicating that if treatment with long-acting somatostatin-analogues is combined with another drug, called pegvisomant, this can successfully resolve the remaining, peripheral form of acromegaly. (See section on medication below).
However, the new theory does not appear in the new American guidelines for acromegaly, and Dr Neggers admits that, around the world there are some non-believers. One leading professor of endocrinology told me he remained agnostic about the hypothesis. The American Association of Clinical Endocrinologists advised me that they only included data in their latest guidelines that had achieved general consensus, but if the new theory proved to be accurate, it could appear in the Associations next guidelines.
Dr Neggers and his team are now calling for other scientists, clinicians and pharmaceutical companies to conduct further studies to test whether their theory is correct.
Sourced from Article Online;
New guidelines for the treatment of acromegaly, a serious growth hormone disorder
http://www.news-medical.net/news/20110831/New-guidelines-for-the-treatment-of-acromegaly-a-serious-growth-hormone-disorder.aspx
Published on August 31, 2011 - By John Danzig
I think that sounds prudent of the doctors; I agree with you. Each individual case is in it's own complicated. IE Leignth of time till diagnosis, responsiveness to treatment through surgery, and then medical treatments etc... You could be in remission, and still be feeling different symptoms etc... or as you say your husband is a little above IGF Normalization, and he is feeling quite normal and good! Which is excellent. We are lucky to have Doctors around us that arnt so textbook oriented when it comes to the very limited diagnosis and treatment data, a purely clinical approach rather than wholistic and open minded as to ongoing quality of life issues.
Your husband is very lucky to have someone like you watching over him!
John
John
Heather
I am excited to get it started. I am ready.
Eileen