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Myth: "Cushing's is RARE", "No one has Cushing's!", "It is literally impossible for you to have Cushing's Disease!"


MaryO

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Myth: "Cushing's is RARE", "No one has Cushing's!", "It is literally impossible for you to have Cushing's Disease!" 

 

Fact: We have all been guilty of referring to Cushing's as a "Rare" disease. I (note: Karen Thames), myself, say this all the time. In fact, the statistics state that only about 2 in every million people are afflicted with this disease. However, these are documented cases.

 

In reality, Cushing's is not as rare as we once thought. The fact is that Cushing's is just rarely diagnosed! Non experts tend to not test accurately and adequately for Cushing's. With an inappropriate protocol for testing, the prevalence of accurate diagnoses decreases. Cushing's experts DO understand how extensive and difficult the diagnostic process is, so they tend to be more deliberate and thorough when exploring possible Cushing's in their patients. Cushing's patients who cycle also have to be more persistent in asking for adequate testing so that they are appropriately diagnosed. 

 

The following video is an accurate portrayal of what many patients experience when trying to get help for their symptoms:

 


 

Please review the following links:



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OMG that's my story. I thought i just had bad doctors and thought I was an exception, so I complained to our College of Physicians and Surgeons in Canada because my family doctor and another doctor wouldn't test me for Cushings. The college did a 6 month investigation into my allegations and reprimanded both doctors. They each had to write up 2-4 page reports on what is cushings and psychosis and how to properly test for it. When I tried to take it further and sue the doctors, I was told by a court medical consultant that the time it took for me to get a proper diagnoses was not inordinate. After reading bios I learned I wasn't the exception to the rule, I was the rule. This is how we with Cushing's are treated. There has to be something we can do. About 13 years ago, I had a hair analysis done which broke down the chemicals in my body and explained the impact of chemical combinations in my system. It was amazing. It told me at least twice that I had an endocrine problem. My chiropractor did this and neither he nor I knew where to go with this info. I had never heard of the endocrine system before or an endocrinologist so I didn't pursue it. I wonder now if this could be another way of testing for Cushing's. Has anyone heard whether or not hair analysis are being considered for Cushing's?    

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Has anyone heard whether or not hair analysis are being considered for Cushing's?    

 

Yes, I have read a paper which said that hair testing is a promising way to detect elevated cortisol levels, especially in Cyclic Chushing's. Basically, a few strands of hair are dissolved, the cortisol is extracted and then tested for as per the other test methods. What's especially cool is that sections of the hair can be analysed, by chopping it into 1cm pieces, or whatever is appropriate (hair grows about 1cm per month). The chemical composition of say 1cm of hair will give a view of what was happening in the blood for that month. It's basically like UFC, averaged over a longer period than 24hrs. Of course, "normal" population values will need to be determined, but if this sort of test can be properly developed, it will be a huge advantage to our limited testing arsenal.

 

The publication can be found at: http://press.endocrine.org/doi/full/10.1210/jc.2012-1852

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