FAQ Time.

After my last post, I had a bit of feedback asking me what exactly Cushing’s is, how it is cured, what causes it, what are the symptoms, etc. Cushing’s is really difficult to describe seeing as I’m not a doctor and I’m still trying to learn as much as I can about it as I learn more about my diagnosis. I’m going to answer all the questions I had as best as I can, but again, for those who search up information for Cushing’s and happened to land on my post, I’m no doctor and my journey is not the same as yours. People get this illness from different factors, so if you feel as though you have Cushing’s, it is best to ask your doctor to be referred to an endocrinologist so that you can have a specialist look at your specific needs and find the root of your problem! I think this is going to be a good way for me to learn more about what I’m going through as well, so why the heck not write about it? I also have A LOT of people stare at me as though I’m big because I got lazy – no. Quite the opposite. I went on a strict food sensitivity diet and was eating only whole foods with a little treat once or twice a week plus exercising and still gained a ridiculous amount of weight for a human being who was being healthy, in 3 months. So clearly, this had to do with a body issue and at last – I have found some answers for now. But let’s get onto the real important questions, shall we?

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Question 1: What exactly is Cushing’s?

To start off, Cushing’s can be defined to as “Syndrome” or “Disease”. The following information for this question is what I have gotten off the following site here.

Syndrome is caused by a hormonal disorder. This is when you get a list of different symptoms that happen when your cortisol levels are way too high for the normal for a really long period of time. This can be referred to as hypercortisolism. This can be caused by medications that cause cortisol levels to spike up. This is an external cause. On the other hand, there is an internal cause – something causing your adrenal glands to overproduce the cortisol in your pituitary glands. Most cases, there is a tumor in the pituitary gland that is causing the excess release of cortisol. Other internal reasons can be from an adrenal tumor or other unknown causes. Once you’ve been diagnosed with Cushing’s Syndrome, it is really important that you work with your endocrinologist to find the cause of your excess release of cortisol to then find a way to treat it.

Disease is caused by a tumor in the pituitary gland that releases excess amounts of ACTH (a hormone). This type of tumor is non-cancerous (benign). ACTH travels down to your adrenal glands (your glands are above your kidneys) which sends the “all good” to produce cortisol. This isn’t the harmful part though (even though it is, but in excessive amounts), the harmful part is that when someone has the disease, it is because a group of abnormal cells grew in your pituitary gland and formed the tumor that over-produces ACTH.

Question 2: What are the symptoms exactly?

This one is a little personal but honestly, it isn’t anything I can hide. There are quite a few symptoms. They’re all pretty physical externally and internally. There are also mental symptoms. These are caused when the excess cortisol in your body has been circulating in your body for too long. From what my doctor told me, it can take up to 10 years for Cushing’s to take it’s full effects and from my personal experience, I started having issues with anxiety and depression at the age of 12 and the Cushing’s symptoms really started to take shape around/just after I turned 22 – so that could totally make sense. Anyways, back to the point.

My personal symptoms are “moon-shaped” red face – my face has never been this round in my life. Not even when I was a child. My skin also gets really red, especially when I’m warm. Horrible, purple stretch marks. I even have them on my legs even though my legs are normal. A hump on my back, it’s not massive but it’s where fat tissue builds up. It’s at the top of my spine/bottom of my neck. I also have the lovely symptoms where all my fat builds up in my abdominal area but my legs and arms stay thin. Gotta love looking pregnant – actually, no. Pregnant women look better than what happens with this fat build up, especially since pregnancy is totally different, but Cushing’s causes women to gain fat to a point where they look pregnant since that is the only place they gain most of the weight, besides the face. Those are the physical symptoms – I have all of them except for the easy bruising. My other mental/internal symptoms? My back kills, all the time. I’m absolutely exhausted no matter how much I rest. I have facial swelling, as well as internal swelling in my stomach (I’ve had many poke my stomach for me to prove how much of my gigantic-ness is from hard swelling… It’s as hard as a rock). I’m irritable, like incredibly irritable. I was always an impatient person, but since I’ve been gaining more weight and experiencing more symptoms of Cushing’s, my irritability has gone through the roof. You could breathe a certain way around me and I’ll probably bite your head off, sorry. I’m hungry ALL THE TIME. I know people always say they are but I seriously mean it… If I had 0 self control, I would be eating every half an hour, not even kidding. I can’t remember things like I once used to, I can’t learn things at the same speed I used to… I get confused very easily and things that used to be easy to me are no longer simple. I can’t sleep properly and even on the very rare nights where I get more than 4-5 hours of sleep, the quality of sleep just isn’t the same. It is incredibly poor. I also started getting acne, cystic acne actually. And anyone who has known me for a long period of time know that I never had acne, really. Obviously the unavoidable zit here and there, but now it’s all over.

So overall, the list symptoms one can experience are the following, also taken from the site I listed above:

Moon-shaped face w/ redness (not everyone experiences redness), purple stretch marks, fat tissue build-up in-between the shoulders, fat buildup around abdominal area but no extreme weight gain on arms and legs, bruise easily and excess growth of facial and body hair (in women). Cushing’s is more common in women than men, but yes, men do get Cushing’s!

Question 3: What needs to be done to find out how you have it?

Lots of fun tests. Lots and lots of blood. First, what my doctor’s did for me was just have blood tests done for everything. That is how this journey started. At first, my cortisol was a little over 14 (I’m not 100% sure what the name of the unit is called to measure the cortisol levels, I just know 14 is where you want to be and I was a bit above it at the time when the tests for random things started). The next blood test I took, the level was at 18. My endocrinologist was sent these results when I was referred to him, so he got me to do more blood tests and my cortisol levels went up to 20. So recently I did 2 more blood tests and another 24 hour test that isn’t the most pleasant – ha. Now I just have to wait and see if the cortisol lowered at all in any of those 3 tests, or if it continued to rise. From there, that is how I am going to go about with my endocrinologist to see what type of treatment I need or what further tests I need, like an MRI to see if I in fact have a tumor in my pituitary gland. I had a test before that he had me do called the “dexamethasone suppression test” and my cortisol levels didn’t lower, so he had me do one of my blood tests without the suppression and then again with suppression. This suppression test measures how my cortisol levels change in terms of a response to an injection of the dexamethasone. Dexamethasone is a corticosteroid medicine that changes the cortisol hormones in your system. This is supposed to help decrease the amount of ACTH that your adrenals produce, and in my case the first time around, they only went higher. So the second test was put in place with it to make sure it wasn’t just a fluke. He told me that people with Cushing’s, the medication doesn’t suppress the cortisol levels.

There are the answers to the not-unusual type of questions I get from friends and family. Doing this also helped me learn a few things better as to what I’m going through, but now it is just the matter of figuring out exactly what is going on so I can proceed with finding a treatment! It’s really discouraging when I know there is nothing I can do to better myself until I find an actual treatment. No diet, exercise or meditation is going to help me out with this weight gain, so it literally is just taking it one day at a time and just making sure I don’t get so discouraged and keep treating my body as healthy as possible. Those things will help with keeping my mind and body as healthy as possible despite the things I can’t control. It’s an every day battle but everything will be better before I know it 🙂

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