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!!  

You can send comments via the website or connect with us on Facebook or send me an email

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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.

    • For more than a decade I’ve been screaming that something was wrong with me. Dr’s look at how healthy I appeared on the outside and said I must be just lazy and need PT. Years and years of PT and still did not feel better. Spinal adjustments and injections. All kinds of tests. Only thing clinically wrong with me in the beginning was heart palpitations and boarderline hypertension.

      Here we are 14 years later and I have a pituitary tumor, Demyelinating disease and hypothyroidism.

      I’ve learned of this tumor since spring 2019 and I have yet to see an endocrinologist or neurologist. I was given the diagnosis and literally forgotten. Even tho the MRI notes literally say to follow up with Endo care.
      I have been put on levothyroxine (By an FNP) and I’m not sure if my adrenals were checked.
      Now we have this pandemic. I have no phone service. The postal service is being dismantled and I haven’t even gotten a letter from my dr office even asking about me.

      Nobody seems to care. So I’ve stopped caring. I have lost all faith in our medical system. I am forgotten!

      • You are NOT forgotten!!!! I feel the exact same as I have severe problems that even blood work show but I can’t get to a dr who cares or even wants to deal with it. We have to stay strong and keep fighting. I feel like my life is literally over, I have no hope but still trying because I deserve it and so do you. Maybe passing it back to me and for us to pass on to others as well will make us feel we are still here if just a little. “You are Not forgotten !!!

  2. For heaven’s sake do not give up! I had almost 20 years of acromegaly symptoms before a doctor would take me seriously.

    Eventually I had the surgery to remove the tumour, four years ago. I am well now, and no medication needed.

    You must make lots of spirited noise unfortunately, to get anyone to hear you, but it is worth it eventually. Never, ever give up!!!

    Good luck.


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