Is Cushing’s really that rare? Or is it simply undiagnosed?

Here are some thoughts from the Cushing’s Help message boards over the years.

  • Is this really such a rare disease, or more of a rare diagnosis? I mean, I remember when Thyroid issues were taboo and non-existant to regular docs, but now they all see to know something and are recognizing the issues…Seriously, if only 10-15 in every million have Cushings, how on earth did a well visited forum get created???
  • My personal opinion is a rare diagnosis….I see people with acne covered red moon faces, frontal obesity and a hump and just shake my head. If I can talk to them I will mention it but I am super sensitive about my weight and don’t want to insult anyone.
  • I believe it is both. The disease itself is rare, but more and more people are coming forward. I don’t think it is as rare as they think it is in research. It is also rare to find an educated physician for this disease. They are out there, but why aren’t there more? This makes for rare diagnosis. It is not like I can walk down the street and see tons of people with cushings symptoms, but now that I am aware of it I DO see some.
  • i believe until it is not so underdiagnosed we will never know if it is actually rare.
  • I don’t think it’s as rare as doctors think it is. I think the problem is they send people out based on individual symptoms versus looking at them all as a package. For example I got sent to: a psychiatrist for depression, a gastroenterologist for stomach stuff (diarrhea and constipation), an endocrinologist for the hormone/insulin issues, a neurologist for the headaches, an OB/GYN for the “missed periods” and an opthamologist for the vision issues. None of them talk to each other and none of them work together. How could they make a diagnosis of anything other than their specialty based on that? I think until docs take a team approach, it won’t be diagnosed more.
  • We all tend to think it is rarely diagnosed, more than it being a rare disease. Then, you get into the whole idea of, what causes it anyway?

    Who knows? Nobody knows for sure, but say it is from our environmental issues. Maybe it’s from chemicals we are exposed to, and this is how our bodies react. Then if it is environmental, you will start to see more and more people with it because more and more people are exposed to the same environmental issues. Maybe the same thing causes cancer in some people, and pituitary tumors in others. I’m not saying this is the case, I’m just throwing ideas out there. You didn’t hear of Chronic Fatigue and Fibromyalgia 30 yrs. ago either. Maybe in another 30 yrs., Cushing’s will be a disease that most people know about. That would mean more people getting diagnosed, and it would seem that Cushing’s would be on the rise, but awareness is probably the key.

  • What do YOU think?

One Response

  1. Comments from Facebook:

    I see people all the time that must have it.some times i go and talk to them.I wish i could do that more often.

    ~~~

    I think it goes undiagnosed because the symptoms are seemingly common and addressed as stress, overeating, osteoporosis, high blood pressure, fatigue, fractures, other glands such as the thyroid failing, etc. Each and every symptom is diagnosed separately. When you pull it all together, it can equal one disease. If you have all the symptoms at … Read Moreone time, doctors don't seem to realize that this can equal something else going on in the body related to disease. Cushing's can also happen rapidly, or can stay with you for a matter of years. It happened to me gradually, but later in life, my symptoms had appeared more rapidly causing me to want to just finally give up the ghost. If your symptoms happen gradually, doctors won't hardly give you the time of day. But you KNOW there is something wrong. Anyway, it's a difficult disease to diagnose, too. It takes more than one poke of the needle or one pee jug to get a diagnosis. Persistence is key. What it boils down to is that I think more people have it and it just goes undiagnosed. That's my two cents, but for what I wrote it looks more like $1.00. And if it wasn't for you and your website, Mary, I doubt I'd be here today. Thank you….you are truly a blessing… to all of us.

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