Today we are starting a campaign to make sure all our readers diagnosed and living with acromegaly know their IGF-I levels. Make sure you ask your physician to tell you and please check your levels periodically. In our recent podcast we discuss results of our acromegaly survey in considerable depth.
From Dr. Lewis Blevins co-founder Pituitary World News – A recent survey of patients with acromegaly conducted by Pituitary World News provided disturbing results regarding the overall control of their disease state. Respondents were asked a number of questions pertaining to their last known IGF-I levels.
Of those with acromegaly who had been treated by surgery, and without any exposure to medical therapy, only 44% reported having achieved a normal IGF-I level. An equal proportion of patients head elevated IGF-I levels while 11% did not know the results of IGF-I testing.
Of those patients who had been treated with surgery, including some who had received one or more courses of radiotherapy, and were on medical therapy at the time of the survey, 49% had enjoyed normalization of their IGF-I levels. Persistent elevations in IGF-I were reported by 37% of patients while 13% did not know their last IGF-I level. These results are quite alarming for a number of different reasons.
As a consequence of advances in surgical techniques, site directed radiotherapy, and especially developments in the pharmacologic management of patients with residual or recurrent acromegaly, it is now possible to control IGF-I levels in a majority (up to 95%) of patients. Yet, a surprising number of patients who participated in the survey, by self-report, had uncontrolled acromegaly despite treatment. How might this be explained? Only one-quarter of respondents were managed in a pituitary center by endocrinologists and neurological surgeons who focus on pituitary disorders. It is conceivable that surgeons and endocrinologists in community and private practices are not quite as aggressive in prescribing treatment as are those who specialize in pituitary disorders. In fact, clinical experience and speculation of results of post-marketing drug studies suggests that less experienced practitioners do not necessarily optimize doses of pharmacologic agents used to treat acromegaly. Regardless of the underlying explanation for these observations, there are two potential solutions to the problem of uncontrolled IGF-I levels in patients with acromegaly. First, treating physicians should aggressively titrate the dose of medications, and even use combination therapy when necessary, in order to normalize IGF-I levels. Second, additional surgery and/or radiotherapy may be required for those uncontrolled patients. This might be best accomplished at a tertiary medical center with an established record of caring for patients with pituitary disorders. Persistently elevated IGF-I levels on or despite treatment should prompt physicians and their patients to work together to achieve control of IGF-I levels so that symptoms and signs and morbidity and mortality of acromegaly may be improved or normalized.
Equally disturbing, however, is that just over one-tenth of patients who responded to the survey did not know their IGF-I levels and, thus, could not relate their degree of control following surgery and during medical treatment. IGF-I levels reflecting the degree of control should be communicated to patients by their practitioners and other healthcare providers.
Patients should be empowered to ask for test results if they do not receive acknowledgment regarding the efficacy of treatment they have received. Providers and patients must work together to effectively communicate for the benefit of patients affected by this debilitating disease state.
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