My Endocrine Life banner

$250 and No Guarantees

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.

What If?

I actually hate this question. You can go round and round in circles, but you'll never know the answer to "What If?" All you'll know is where you're at.

What if someone had done more test? Would I be so sick today?

In March of 2004 I was diagnosed as having Type 2 diabetes. I was flat out told by my family doctor "you did it to yourself. Look at you. Look at how heavy you are."

I've never been able to get my sugars under control with medication. I've had side effects and maxed out the safe limits for these pills

Two years previously, I was diagnosed as having gastroparesis. You can find out more about that by reading the article and watching the video at Web MD.

At this point in my life, I usually eat two meals a day, and a small snack. Foods have to be soft, or I cannot digest them. Right now it's soup and a sandwich for lunch, some kind of ground meat at supper with vegetables.  Snacks can be anything fruit cups, which is just baby food for adults, maybe some beans (without pork or meat to avoid fat), peanut butter & crackers, hard boiled eggs or cottage cheese. 

Endocrine problems are complicated to deal with, and can take multiple medical disciplines working together to solve.

So What Are We Dealing With? 

I've got to say that I'm very confused at the moment. I have the majority of the major symptoms of Cushing's disease, and have had two tests come back showing high Cortisol levels.

My family doctor, gastroenterologist and even the eye specialist have sent me for test tests for Cushing's the latter two not knowing that the family doctor or endocrinologist had also sent me for similar tests. All three think I have Cushing's or at the very least something is wrong with my Pituitary gland that is causing the rest of my endocrine system to go out of whack.

The problem is that the endocrinologists don't agree. 

What's The Point Behind This Site?

This site is not a bitchfest. The point is not to complain endlessly. I'm not that type of guy.

However, I am on a certain path, and from what I've been reading so are many other people. So, I decided to start this site and keep a running blog as I go through this journey.

Hopefully, this helps other people on their journey as well.

Keep fighting. Don't give up. Find strength wherever you can. 

 

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.

Read More >>>

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.

Read More >>>

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.

Read More >>>

All Endocrine Disorders - Endocrine Web

A list and basic descriptions of Endocrine Disorders. 

Read More >>>

© 2017 My Endocrine Life. All Rights Reserved.