cushing's-syndrome

Cortisol

Cortisol, what is it? What does it do normally and why does having 10 times the average amount mean that my body is acting weird? 

What is it?

Cortisol is a steroid hormone. Steroid hormones are exactly what they sound like: a steroid that acts as a hormone. Specifically, cortisol is a glucocorticoid hormone. That just means that it binds to glucocorticoid receptors. I’m not going much more into detail about that stuff because I do not understand chemistry…

All steroid hormones are responsible for controlling metabolism, immune functions, inflammation, water and salt balance, and development of sexual features. So they are very important! 

Cortisol is released in response to two things: stress and low blood sugar. Many people call it the stress hormone. In response to stress and low blood sugar, cortisol does a few things.

  • Decreases bone formation
  • Suppresses the immune system
  • Increases blood sugar
  • Aids in metabolism of fats, proteins, and carbohydrates

Why does it do these things?

When your body is stressed, it goes into survival mode. The body will do everything it can to ensure that you are surviving. The body’s main focus, biologically, is getting nutrients. 

So your body realizes it has incredibly high levels of a stress hormone. That must mean you are in TERRIBLE DANGER! Oh, no! Your body reacts to the terrible danger by attempting to preserve energy and get as many nutrients as possible from anywhere it can. 

Why is my body freaking out?

Imagine a little person in your head monitoring your body’s functions and levels. Suddenly, your little monitor sees that you have 10 times the normal amount of cortisol being released. In reaction your monitor says “Oh, no! You must be in grave danger! Let me go ahead and do some things to help you fight this danger! I will save your nutrients and energy, and hopefully you will survive this terrible, horrible, life-threatening thing!” Unfortunately, I am not in terrible danger, so the things my body is doing to “save” me are actually doing more damage. 

So that is cortisol as I understand it. If you want to read more about the hormone and its effects, check out some of these links:

https://en.wikipedia.org/wiki/Cortisol

https://www.adrenalfatigue.org/cortisol-adrenal-function

Diagnosis: My Reaction

“You have Cushing’s Disease.” Four words and my entire life has changed. 

Getting a diagnosis can be a difficult journey. When I finally heard the words “You have Cushing’s” I was overwhelmed with a sense of relief but also a feeling of worry. I cried. Unsurprisingly. But mainly they were tears of joy; tears of utter relief.

The doctor was telling me that I had an incredibly rare disease: I was 1 in a million. I should be terrified. 

Hearing that you have a tumor in your brain that has been growing for 3 years is typically a call for alarm, horror, and fear. But for me, it was just an incredible relief. I don’t know what else to call it. 

It all made sense now: the acne, the hair loss, the sweating, the excessive weight gain and the inability to lose weight even when eating well and exercising daily. I wasn’t just gross – there was genuinely something wrong with me. My body was wrecking itself and it wasn’t my fault.

I had been going to doctors for years and hearing the same thing: “If you just lose weight all these symptoms will go away. You won’t have acne, you will sleep better, you won’t be so tired. Just lose weight.” 

They were wrong. The weight wasn’t causing these symptoms, and even if I went on a diet and exercised daily the weight wouldn’t come off. 

Hearing that I have Cushing’s has renewed my faith in myself. I have been struggling for years believing that I couldn’t lose weight or get healthy because I was weak-willed or just built a certain way. I was wrong.

 It will take some time to heal from the years of negative thoughts I have had about myself. For years I have constantly been beating myself up for things that I thought I was in control of when really the Cushing’s was controlling me. 

Since hearing the diagnosis I have found myself stopping in awe to reflect on all the possibilities that are now ahead of me. I have so much to look forward to now that I have been diagnosed. 

Yes, I have to have brain surgery and yes, there will be a point where I feel worse before I feel better; but I have a chance now. I have an honest-to-goodness chance of getting the life I want.

Hearing the words “You have Cushing’s Disease” can sound scary, but to me all I heard was “You have a second chance.”

Drugs used in the treatment of hyperadrenal disorders

As a test, I’m going to try writing up my revision notes on here. Bit of a strange place to start, but it’s as good a place as any, I suppose. So here we go, a quick rundown on the drugs used to treat hyperadrenal disorders.

Specifically this will be about hypersecretion of hormones of the adrenal cortex. A quick reminder of the anatomy of the adrenal glands (or suprarenal, if you prefer):

So you have the inner medulla and the outer cortex, the latter consisting of the zona reticularis, zona fasciculata and zona glomerulosa. I remember these names by thinking of the letters GFR (because this also means Glomerular Filtration Rate which, as a side note, is  around120ml/min). 

Basically, the adrenal cortex pumps out steroids. A quick rundown of what the different sections of the adrenal cortex produce:

1.) Zona glomerulosa - mineralocorticoids (aldosterone etc.)

2.) Zona fasciculata - glucocorticoids (e.g. cortisol)

3.) Zona reticularis - sex steroids (e.g. dehydroepiandrosterone, DHEA)

So, there are three drugs I’ll talk about:

1.) Metryrapone

2.) Ketoconazole

3.) Spironolactone

The first two work by inhibiting steroid biosynthesis.

Spironolactone is a mineralocorticoid receptor (MR) antagonist i.e. it binds to the receptor, but does not produce a physiological response, thereby blocking the effect of agonists (things that bind and DO produce a response).

Firstly - Metyrapone

Like we said before, Metyrapone works by inhibiting steroidogenesis - specifically it inhibits a rather important enzyme by the name of 11-beta hydroxylase. I’ll show in a diagram why this is important:

As you can see, 11-beta hydroxylase converts 11-deoxcortisol into cortisol, and 11-beta corticosterone into corticosterone. Therefore, if it is blocked by Metyrapone, neither cortisol nor corticosterone will be synthesised - thereby treating the hypersecretion of cortisol, for example in Cushing’s Syndrome.

Cortisol works on a feedback loop - if it stops being produced, this will send negative feedback back to the hypothalamus and pituitary, which translates to increased production of ACTH (which stimulates cortisol production).

As I mentioned before, Metyrapone can be used to control Cushing’s Syndrome prior to surgery or for long-term amelioration of hypercortisolism if it persists/if surgery isn’t possible.

It does, however, come with some unwanted actions, like many drugs:

1.) Nausea, vomiting, dizzines

2.) Sedation, hypoadrenalism

3.) Hypertension on long term administration (11-deoxycorticosterone accumulates in the z. glomerulosa and has aldosterone-like (mineralocorticoid) effects => salt retention and hypertension.)

4.) Hirsuitism (excessive hairiness)

Okay, so that’s Metryrapone! Now for the second drug…

Ketoconazole

This is mainly used as an antifungal agent, but at higher concentrations can inhibit steroidogenesis (glucocorticoids, mineralocorticoids and sex steroids). As with Metyrapone, it can also be used to treat Cushing’s 

Unwanted actions include nausea, vomiting and abdominal pain. Also unwanted are:

1.) Alopecia (baldness)

2.) Gynaecomastia (enlargement of breasts in males, oligospermia (deficiency of sperm in the semen), impotence and decreased libido

3.) Ventricular tachycardia 

4.) Liver damage - possibly fatal. Liver function must be monitored on a weekly basis 

And finally…

Spironolactone

This drug is used to treat primary hyperaldosteronism, also known as Conn’s Syndrome.

It must first be converted into its active metabolite, Canrenone. As I mentioned before, Spironolactone works not by inhibiting steroidogenesis, but by working as a competitive antagonist to the mineralocorticoid receptor. This blocks Na+ resorption and K+ secretion in the kidney tubules, so is classed as a potassium sparing diuretic.

Unwanted actions include:

1.) Menstrual irregularities 

2.) Gynaecomastia (due to androgen receptor binding)

3.) GI tract irritation

N.B. Spironolactone must not be used in patients with renal/hepatic disease; it is contraindicated.

And that’s about it. Forgive the rather disorganised/potentially unclear nature of this post, but it was my first one like this. I might do more. I’m not really sure - there’s a hell of a lot to get through and writing this out, while a good reminder, does take an extra bit of time. We shall see!

Watson

So the ultrasound revealed….normal! I guess I just have a random lump on the back of my neck that appeared six months ago. I am happy about that. kel-rhea, I did have alarmist theories about tumors, cancer, etc, and at one point we thought it was Cushing’s Syndrome, but my cortisol levels were normal so it was not that! I believe that the Seroquel is what caused my weight gain, insulin resistance, and uncontrollable high blood sugars, so I am happy to be almost completely off it and experiencing a lot of improvement in all those areas. I’ve been on it for years and I thought I might be taking it forever but I feel so blessed that I don’t need it at this point anymore! I am still on a lot of psych meds but that’s a very strong one so to be able to come off it feels really incredible. Tomorrow at my psych appointment we’ll see how the psychiatrist feels and where we want to proceed from here. Seroquel made me able to sleep so insomnia has been increasingly more of an issue- we’ll see if we can change some things around that will help with that! 

I’m going to post in a bit about the theme of the day but I just wanted to share the good news about my neck :)

Symptoms: Foggy Brain

Since I found out I had Cushing’s I seem to be mentioning my tumor pretty frequently. I don’t want Cushing’s to be the thing that defines me but it definitely has had a very large effect on me and my life for the past three (or more) years and will continue impacting me in the future. I find myself blaming the tumor frequently and even though I try not to mention it, somehow it aways comes up. One of the main reasons I mention the tumor in polite conversation is in reference to my poor memory and my fuzzy headed-ness. 

This week I have been thinking about my mental capacities a lot. I have been thinking about how I think now compared to how I used to think. I’ve been noticing much more frequently just much my brain has been impacted by the Cushing’s. Not only have I been thinking about the status of my brain currently and the difficulties I face as I heal, but I also have contemplated how my brain has been affected the past few years.

I have forgotten so much and don’t know if I will gain the memories back or if I will have to relearn things. I have forgotten basic things that everyone learns in elementary and high school. Mental math is hard for me, directions are confusing, and memorizing things is near impossible. I have forgotten names. I have forgotten experiences. Most of high school is just a big blur with only particularly emotionally strong memories standing out. When I try to recall what I learned last semester I draw a blank.

It’s really tough. All my life I had been praised for being the smart one. For being curious, reading constantly, and pursuing difficult classes. When I got to college I started feeling less capable. I was no longer the only one who was “smartest in my class.” I got down on myself a lot, thinking I was stupid or just didn’t care enough.

Reading became more difficult and classes more frustrating. I thought that it was just college, that college was just harder than high school and I hadn’t been as prepared as I thought. I figured that it was a learning curve and eventually I would catch up; I just had to get used to reading more academic papers and working in different conditions than before. 

When I found out about Cushing’s it suddenly made so much more sense. I wasn’t just inconsiderate, I wasn’t just bad at memorizing the Periodic Table of Elements, I actually had something keeping me from being able to remember the names of my co-workers, my best friend’s birthday, even conversations I had the night before. It is so difficult to come to terms with the fact that it wasn’t me. I’m not “just dumb” or “not suited for academics.” It wasn’t that I wasn’t trying hard or that I had lost interest. My brain wasn’t working like a normal brain.

The easiest way for me to think about it is that the cortisol is like fog. The more cortisol was pumped out, the more fog built up around my brain. For years fog rolled in and filled my skull. Now there is no more fog being made but I still have to wait for it to clear. I am slowly wading through the fog, trying to find my way out. There is many years worth of built up fog in my way and it will take time for it all to clear.

But I have to also focus on the good things. I have noticed that my memory of recent things (things that have happened since the surgery) is slightly improving. I still have difficulty reading and retaining what I read. I also have issues keeping numbers straight, doing mental math, or repeating back a lot of information. But the brain is plastic (I remember that much from Psych 101) and the more I use it the stronger it will get. 

Feeling dumb is very hard on me. I have always been proud of my intellect and losing that has taught me a lot about myself. I no longer judge people based on their education or intelligence. I recognize now that people can have strengths in other areas and that is just as important. I realized that high school and college aren’t for everyone and that some people thrive without them.

I am grateful to have learned these things but I am also still very frightened that I will not get back to my original brain functions. I am afraid of people thinking I am stupid. Every time I make a mistake or say something dumb I want to shout “It’s not my fault! It’s the tumor! It’s a symptom of Cushing’s!” I am so frightened by being stupid because my intellect was such a big part of me growing up. I’m not beautiful, I’m not talented, I’m not athletic or artistic, but I had my brains. And if I don’t have that anymore, then who am I?

8

So I think I may finally FINALLY have an answer.  Typing this out is very hard for me because I tend to question the hell out of myself.  I have also lost a lot of faith in the medical industry because of how many times I’ve been turned away with no answers.

However, I think I may finally have a damn good idea what is going on, and I’m building up my courage to ask my doc to be tested.  I think I may have Cushing’s Syndrome.  The photos above are presented as evidence of some of the most common symptoms: central body weight gain, moon face, and acne.  The first three pictures are from before I got sick.  I ran every other day and loved it, I liked to be active, and I didn’t have too much trouble with my skin.  The fourth image is of just after I started to get sick.  I developed horrid acne that I STILL have trouble with at 26 years old and began to develop the “moon face” that is common to Cushing’s.  The fifth image is just one year later, with an extra 60 pounds.  As the last three images show, over the last seven years the weight gain and moon face have just gotten worse.  I have tried exercising, dieting, going vegetarian,  abusing laxatives, and limiting myself to 1000 calories a day with little to NO results.  I just tipped the scales at 200 pounds.  No matter what I do I can’t seem to STOP this weight gain.

There are other symptoms I have too.  Anxiety and depression, muscle weakness, purple stretch marks on my belly and thighs, fatigue, and headache.  Furthermore, there are symptoms that only crop up in long term untreated Cushing’s.  Namely hypertension, tachycardia, and insomnia.  ALL of which I’ve developed in the last month or so.

Lastly, one of the medications used to treat Cushing’s is Metoprolol.  My doc started me on this drug two days ago, and I feel better than I’ve felt in a LONG time.  My husband immediately noticed and improvement in my physical strength AND my attitude.

I’m GOING to ask to be tested.  The question is, will the doc take me seriously?

I’m always shy, I’m always afraid to express my concerns, I’m always afraid of being swept under the rug… I’m NOT giving up this time.  I’m not walking away unanswered…

I meant to post this yesterday, but I wanted to spread this around.

April 8th is National Cushing’s Awareness Day.

Now… A lot of you are probably wondering what Cushing’s is (or really is). In case you’re wondering, typically, Cushing’s is a form of a benign tumor that sits either on the pituitary gland (a small gland about the size of a pea that sits just underneath your brain), or your adrenal glands. Those two places control your cortisol, hormone, and steriod production. When those things are out of wack… EVERYTHING is out of wack.


But is it cancer?

No, it’s not. But let’s take a look at these side effects.


- Excessive weight gain. This is due to cortisol, hormone, and steroid overproduction.


- Insomnia


- Facial Flushing. Those rosy cheeks aren’t always a good sign, ladies and gents.


- Irregular hair growth in places such as arms, neck, stomach, etc.


-Hair thinning/loss on the head. I lost a majority of my own.


- Round face. Again, chubby cheeks are one thing. An excessive double chin is another.


- Stretch marks. Might I add, very painful stretch marks. Some get to a dark purple hue, and some even rip and bleed. I’ve had the misfortune of having both circumstances happen.


- “Buffalo humps”. A buffalo hump often happens around the back of the neck and upper back areas, as well as above the rear. This is a key sign of Cushings.


- Muscle weakness.


- Extreme fatigue. I’m not just talking about going for a run and feeling tired. I’m talking about not being able to walk around the grocery store without feeling faint. I’m talking about getting winded and exhausted after doing simple tasks, such as tying your shoes.


- Easy bruising, and slow recovery from bruises, cuts, scrapes, etc.


- Easily nauseas/constantly nauseated.


- Bone loss/fractures.


- Night sweats.


- Frequent hot and cold flashes.


- Severe depression and anxiety. This is a MAJOR sign. Sadly, this often goes misdiagnosed, when, a sad reality is that it’s a side effect.


- Diabetes. Again, this is often also sadly misdiagnosed. 20% of diabetics may be Cushing’s candidates without even knowing.


- Extremely high blood pressure.

- Kidney Stones.


- Severe headaches and migraines.


- And ladies, not only do we get all of this, but your menstrual cycles are off, and often, very painful.

No. It’s not cancer. But it sure as heck sucks regardless.


Many of these side effects often get misdiagnosed by doctors. If you suspect that you or someone you love is a Cushing’s candidate, find a endocrine specialist, and get examined for Cushing’s. The name of this disease is cute, yes. But know this:


Cushing’s is a silent killer. Don’t hesitate.

I’ve made an appointment to go see my doctor about getting tested for Cushing’s syndrome. I have pretty much all the symptoms.. but I’m terrified because if I DO have it, its going to be caused by a benign tumour on my adrenal glands or pituitary gland which I’ll have to have surgery on. Then there’s the “extremely rare” chance that they’re not benign. I’m trying to not panic, but.. hahaha. Anyway, doctors in a week. We’ll wait and see.

Moon Buffalo?

Welcome to my new blog! I am a 20 year old student recently diagnosed with Cushing’s Disease. I hope this blog can help others going through the same battle that I am fighting and have been fighting for the past three years.

This blog will be a record of my recovery and will also include information on the disease, getting diagnosed, and some personal stories about how Cushing’s is effecting my life.

So why Moon Buffalo? Two major symptoms of Cushing’s are a fat deposit between the shoulder blades (known as a buffalo hump) and excess weight and roundness of the face (moon face). I took these two symptoms that I DEFINITELY have and created the Moon Buffalo – my disease animal :) even though Cushing’s is a serious disease, I want to keep things in good humor so the moon buffalo helps me think of my disease in cuter terms!

I hope this blog can prove to be therapeutic as I recover as well as informational and helpful for anyone on a similar journey as I am.

Cushing's disease

So it’s official this is what I have. Some of you guys have asked what is really going on with me. I haven’t been upfront about it, mainly because I was waiting for the official confirmation.

I have a 7mm tumor on my pituitary gland. I get to sit down with a neurologist on the 21st. Hopefully we can schedule a surgery soon. I start school on the 25th and I hope I don’t miss too much of it.

Am I scared yes! I’m having BRAIN SURGERY!!! Without your brain your not even you and can’t even function. Fuck this rare disease! And fuck this tumor that I named Joel.

If all goes well, all my health problems should disappear.

Shit I think my doctors misdiagnosed me 8 years ago and I’ve been trying ever since to alleviate the symptoms of a PCOS that never improves. I have no ovarian cysts and I have many more symptoms in common with Cushing’s Syndrome, including the fucking buffalo hump on the back of my neck and fat deposit over my tailbone, moon-face, bad healing, constant exhaustion and weakness, bad skin quality and pink stretch marks, weight gain around the waist and pendular belly, ANXIETY DEPRESSION AND INSULIN RESISTANCE… All of them. And from what I’ve been reading the whole day they didn’t discard Cushing’s with the adecuate tests and procedures. I’m so fucking pissed. They gave me a chronic illness to deal with, and when I failed to improve with.any.fucking.treatment. they told me to lose weight. Fuck them all. If they had done the right tests now I could be cured, by surgery or pharmacological treatment!
I hope my doctor understands this and does the extensive tests needed and doesn’t fuck around again. I stg if I have pituitary or adrenal tumors I will burn their houses with their lazy asses inside.
All these years they saw no improvement and dared to see me lose my physical and mental health again despite my efforts and their only response was to doubt me or put me back on birth control that I had told them was hurting me instead of checking the diagnose of a chronic illness that shouls only be diagnosed after discarding other illnesses. FUCK THEM VERY MUCH.

3

The top picture and the bottom picture show my shredded pre-Cushing’s abs. Call me conceited, but I worked hard for those! xD The elevated levels of cortisol my body has been exposed to for so long has induced insulin resistance as well as fat gain along my midsection…  my muscles waste away very easily as well; cortisol is highly catabolic (the middle picture). And no, I did not stop exercising nor did I start eating donuts (I actually have been on a stricter diet believe it or not).