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Cushing's disease

Recently, I was sent to see an endocrinologist in Toronto to confirm that I don't have Cushing's disease. Even though she started the appointment telling me that I don't have Cushing's, by the end of the appointment, she was looking at test results I brought with me, (the referring local specialist only sent the results from two tests, not the additional 15 that I've had done in the past year) and decided to have me do a bunch more tests related to Cushing's.

Cushing's disease is very hard to diagnose. It has to do with pinpointing high Cortisol levels as well as where the problem originates. No one test is reliable in confirming or ruling it out, although the 24 hour urine collection test is fairly reliable for determining cortisol levels. You can read more about Cushing's disease on Wikipedia.

One of the tests the endocrinologist ask for was late-night salivary cortisol test. This test is basically chewing on a cotton wad for 30-45 seconds and placing it in a sterile tube. It's important that the cotton not be touched with your hands so that the sample is not contaminated. In total, I did four of these tests.

It was stressed to us, that the sample has to be frozen, and sent back to Toronto for testing. The sample cannot reach room temperature for any prolonged period of time, and so needed to be delivered within 24 hours of coming out of the freezer.

We were told by FedEX, that to deliver it from Sudbury to Toronto overnight, that packing it in dry ice was the safest bet. 

Because dry ice is considered a dangerous substance, the cost to ship it ranges from $250 to $300.

By the way, there's no guarantee that the substance will remain frozen. We asked, and were told that there was no way they could guarantee that the item would not be placed under a vent or next to a heat source.

That would mean that we would pay that amount to send the samples down, and not really be able to trust the integrity of the sample once it arrived at the endocrinologist's office.

We tried calling the doctor's office Thursday afternoon, but they closed early, and their voice message said they were closed until Tuesday.

So, we are driving it down ourselves. It's cheaper, and we know we can keep it frozen, and away from heat sources for the trip.

We've asked. This is our only reliable option.

It's ludicrous to me that we have to close our business for the day, make arrangements for other people to cover other responsibilities and drive over 800 kms round trip to get this sample down there. There is no money or time to stay overnight, and so we have to round trip it.

With all the problems I'm having physically, this trip will be very difficult. My wife will have to do all of the driving. She has problems with her hips, knees and ankles and so this will be difficult for her as well.

At least we can do something like this. I can't imagine what happens to the people stuck without a choice.

 

Purpose of Site/Disclaimer

The purpose of this site is to encourage people with ongoing issues to educate and advocate for themselves medically. 

This purpose of this website is not to give medical advice. I am not qualified to do that. The information found in this website, whether provided by me or shared by a third party, is not intended to be used as a substitute for professional health care or other medical advice. You need to have a health care team that you are working with. You should not rely on the information found here to make decisions about your health or lifestyle without consulting a health professional.

Like most people with Endocrine system problems, my situation, symptoms and issues are different from yours. What has worked or not worked for me, will be different for you. That is the nature of endocrine disorders.

Ultimately, you need to work with and consult with your health care team. As well, you and your family will need to learn to advocate for yourselves. It's too easy to have your symptoms and problems brushed off. Learn to fight back in a professional way, meaning, leave your emotions at the door as much as possible. Yelling and screaming gets you ignored.

 

The Cushing’s Support and Research Foundation

The Cushing’s Support and Research Foundation was founded in 1995 to provide information and support to Cushing’s patients and their families.

Cushing’s syndrome and Cushing’s disease are caused by the excess production of the steroid hormone, cortisol. These relatively rare disorders can be physically and emotionally devastating to the patient. Most patients endure years of symptoms prior to obtaining a diagnosis and recovery often requires a substantial period of time.

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Endocrine System - Wikipedia

The endocrine system is the collection of glands of an organism that secrete hormones directly into the circulatory system to be carried towards distant target organs.

The major endocrine glands include the pineal gland, pituitary gland, pancreas, ovaries, testes, thyroid gland, parathyroid gland, and adrenal glands.

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Endocrine Disorders - WebMD

The endocrine system is a network of glands that produce and release hormones that help control many important body functions, including the body's ability to change calories into energy that powers cells and organs.

The endocrine system influences how your heart beats, how your bones and tissues grow, even your ability to make a baby. It plays a vital role in whether or not you develop diabetes, thyroid disease, growth disorders, sexual dysfunction, and a host of other hormone-related disorders.

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All Endocrine Disorders - Endocrine Web

A list and basic descriptions of Endocrine Disorders. 

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