Saturday, October 6, 2012

Cushies and Growth Hormone Deficiency

For people with Cushing's, the presence of pituitary tumors often leads to growth hormone deficiency. After the tumor is removed, surgical damage from just cutting the pituitary often leads to growth hormone deficiency. For this reason, it is important to understand the signs and symptoms of growth hormone deficiency and the benefits of GH replacement for patients' quality of life.

This article presents an extensive review of the medical literature and concludes that overall, patients benefit from growth hormone replacement, as measured by instruments such as various quality of life questionnaires.

As a Cushie, I had very low IGF-1 levels of 50-90 (normal > 150) since first tested in June 2007. After my pituitary surgery, these levels continued to be low. A doctor administered an insulin tolerance test, a timed test administered to measure the body's levels of growth hormone in reaction to being administered a drug to stimulate GH. Patients with normal growth hormone production see their numbers stim over the 5 mark. I did not stim past 2.55. I was officially declared GH-deficient, and I started growth hormone replacement in August 2010. I have taken injections daily for 26 months. It is imperative to note that while growth hormone replacement has given me back my will to live -- as my friend PB says -- I have had to continually adjust my dose upwards after two pituitary surgeries (0.4 to 1.0) after labs show my IGF-1 levels dropping despite replacement. This can be attributed to the presence of an unseen pituitary tumor on imaging; however, I battle the effects every day. Thus, I face signs and symptoms of growth hormone deficiency each time my dose is too low to keep my IGF-1 levels in range. Growth hormone deficiency is not a disease that ever leaves me, and GH replacement is not a "set it and forget it" solution. Patients are acutely involved, just fighting to have some normal days mixed in with illness.

For help fighting insurance companies to pay for your growth hormone medication, contact the Magic Foundation, leaders in fighting growth hormone-related illnesses in children and adults.

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The Open Endocrinology Journal, 2012, 6, (Suppl 1: M12) 91-102 91 Open Access

Quality of Life in §Adult Hypopituitary Patients Treated for Growth Hormone Deficiency

Marianne Klose, Åse Krogh Rasmussen and Ulla Feldt-Rasmussen*
Medical Department of Endocrinology Rigshospitalet, University of Copenhagen, Denmark

Abstract: Growth hormone (GH) affects all organ systems and several studies have also indicated an influence on health related quality of life (QoL). Assessment of QoL is therefore considered as one of several valid indicators of whether or not treatment with GH is beneficial. Two main types of QoL measures are generally used: disease-specific and generic. A combination of the two is generally advocated as they seem to be complementary. Methodologically, questionnaires must be correctly validated in the relevant context of language and a sufficient population based reference group.

In this review, the previously published studies on the effects of GH replacement therapy on QoL in adults will be scrutinized. Although many of the studies on the influence of GH replacement on QoL assessment are either having a too short follow-up period, are uncontrolled, or using supra-physiological GH doses or inappropriate QoL instruments, there is a growing body of evidence for impaired QoL in GH deficient patients with improvement or normalisation after GH replacement.

Keywords: QoL, GH deficiency, pituitary, patient reported outcome, generic, disease specific.