One in Five …One in Eight. Who cares! One person not diagnosed is one too many.


From J D Faccinetti – There are several expert sources that have focused research on the prevalence of pituitary tumors. Estimates on these studies varied from as high as 30 percent to as low as 1 percent, but most people think it’s around 16%. You can read more about the 16% consensus here by downloading the research report here. So, one in five people, if you agree with the consensus, are running around with a pituitary adenoma.

OK, sounds worth looking into.

There are a few things to consider, however, which could bring this 16 percent number down. Even though a person may have a pituitary adenoma, it could be the non-functioning type, meaning it does not affect the normal production of hormones from the healthy pituitary gland. So it is clinically non-significant. In other words, the adenoma is very much there but the person does not exhibit any of the signs or symptoms of pituitary disease. In fact, a person could live to a very old healthy age and never know they had a tumor in their pituitary gland. Dr. Blevins will have more to say about this in upcoming posts.

Regardless, one thing is true. Even if, for the sake of argument, you were to cut in half the most conservative of estimates, you’d still have way too many people taking longer to get diagnosed, perhaps not even properly diagnosed, and worst of all, not diagnosed at all.

The point is, knowledge and awareness are critical to reduce the numbers of miss/non-diagnosed people. We at Pituitary World News, think the best approach is to spread the word to everyone as broadly and comprehensively as possible. Physicians will then look for the signs and think about pituitary disease, and patients will know to ask questions to help their doctors think more broadly about symptoms. It’s on the radar!

There are other ways. In the case of acromegaly, for example,  a few people I’ve spoken with believe the IGF-1 test should be included in routine blood panels during periodic wellness physicals. We think this also makes a ton of sense.

From a layman’s perspective it seems that if we spent less time trying to prove a point and more time offering common sense solutions we would spend less money and diagnose more people. Can’t remember who actually said this first but it’s one of my favorites:

“Great ideas have something in common with bad ones: early on they both sound ridiculous”

Time to send us your thoughts!!  

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  1. Many articles ive read say that igf-1 is a poor indicator of GH deficiency (GHd) as it is 6 times more responsive to dietary protein than it is to GH, leading to only 20% of GHd patients being low IGF-1. The main improvement i could see happen is pathology reference ranges for pituitary patients being improved e.g. an 8am cortisol of low 200s (nmol/L) is not ok, but an endochrinologist that uses reference ranges as a primary diagnostic tool my name for such is “a paint by numbers endo” will tell the patient there is nothing wrong even when the patient reports pre crisis symptoms occuring every evening, you can imagine what happens to a patient that is treated for GHd, which increases cortisol clearance, ends up in ER unaware they are having an adrenal crisis. The ranges are also inadequate when multiple hormone deficiencies are involved as the hormone systems are strongly interrelated. A patient with just a thyroid problem may be asymptomatic with a freeT3 of 4.5pmol/L but a hypopituitarism patient with that level my be experiencing many symptoms of hypothyroidism, a paint by numbers endo will dismiss the symptoms over the blood test results. If you want to detect more pituitary patients, change the reference ranges. Better yet, a global diagnostic rule, if multiple hormone deficiencies occur, ignore reference ranges, listen to the patients symptoms.


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