#Cushing Disease

[astersmelody]

me when im scared of getting a cane and telling people why i have one because they’ll call me fat and “undeserving” of a cane

my back fucking hurts from my stomach holding like 85% of my weight from Cushing’s LMAO

[sar-kasstic]

Feels like I'm throwing a line in a pool of tar but....anyone heard of/had/has/cured from something called Cushings Disease?

[sluntch]

WOOF

I haven't written anything in a few days, mostly because things are getting entirely worse over the past few days and I have spent a lot of time in and out of the emergency room and rapidly deteriorating due to my superfun illness. However, some good news on this front. Under the cut to keep it from cluttering up the feed.

Had an appointment with an Endocrinologist today (who RULES, by the way) and she gave me what was, in my eyes, my first official Cushing Disease diagnosis. Interestingly enough, the thing that was tell-tale for her were the stretch marks on my stomach. She asked me to pick up my shirt to see the stretch marks I confirmed that I had and no sooner than the shirt started coming up she said "Yeah, you have Cushing." Interestingly, the color and width of the stretch marks is specifically indicative of Cushing rather than "normal" stretch marks. Mine are purple-ish and very wide, the ones that pregnant women or people with larger stomachs may get are not. I had just attributed the marks to me being just a regular fat guy, but apparently not. Dunno, I found that interesting.

The doctor had a lot of good things to say, asked a lot of good questions of me, and gave a very solid path forward as far as next steps in this whole process. I have my MRI to scan my noggin for the pituitary tumor on 10/30 and then, according to the Endo, if there is a tumor there, I will meet with a Neurosurgeon in the next few weeks. From there, it's schedule the surgery, get it done, and then recover. Hopefully that means the surgery could be before end-of-year, maybe even before Crimmus. It'll most likely be the surgery where they go in through my nose, nab the thing, and get out. There is a chance, depending on what is found in the MRI, that they may have to actually cut into my head, so we're hoping for NOT that. If there is no pituitary tumor present, I'll have to get a scan of my chest to check for a lung tumor, so we're hoping for NOT THAT. Either way, with these docs at the tiller, I'm excited, hopeful, and confident in a way I haven't been for a bit. I'm very lucky to have not only access to these doctors and this care bu also for lucking into a good team that continues to actually get work done for me and get me the care I need. I really wish everyone had access to this kind of stuff.

We're getting back into it and this is the first day back. I guess the streak resets? I don't know how to handle that and I'm thinking I also don't give a shit. I'm doing this for me anyway and when you have a streak of pretty bad days, this is just gonna happen. But we're back on the horse and ready to rumble.

"Who Give a Shit" days to go.

[ultradannyboyblog]

I Am Cryin' A Final Goodbye For Holly Golightly

This morning, I had planned to say goodbye to my Holly Golightly (put her to sleep), and I was writing this a few minutes before I took Holly to the vet’s office. She’s been battling Cushing’s Disease for a few years and she is now totally deaf and almost blind. I had been up with her all night and had to give her some Trazadone to calm her down but it had little effect. She was spinning out…

[flowerycoffin]

Guys, I’m sorry but Adam and Mammon look like they have Cushing Syndrome imo

Here’s helpfull graphic from this site (also read what is it. It’s very interesting disease and not all people know about it)

Adam less, even tho in some shots he looks like he’s supposed to have a bigger belly which makes him look so strange and ugh Mammon slim hands convinced me he probably also has slim arms and legs

[mistywitcher]

so i haven’t posted on tumblr in ages because i ended up having brain surgery!

tina tumour is gone! it was a rough few weeks following the surgery, but i think im coming out the other side now!

i no longer have cushing’s disease as my surgery was successful! my cortisol has dropped and now i have secondary adrenal insufficiency and have to take replacement cortisol!

i’m exhausted a lot of the time, have headaches most days but i feel better than i have in years stress wise, and so much mentally with it!

[ogdit]

An addition to my battery acid spaghetti saga

and a later addition

[med4lif3]

Adrenal Cushing's syndrome (research post)

Cushing's syndrome refers to an abnormally high amount of cortisol present in blood.

How is Adrenal Cushing's syndrome caused?:

A tumor present on the adrenal glands (located above both kidneys) will produce an excessive amount of cortisol. This tumor can be malignant or benign, however both types will secrete cortisol.

This extra production of cortisol that is sent throughout the bloodstream, triggers the onset of hypercortisolism in blood (Cushing’s syndrome)

Benign tumors include: Adrenal adenomas (Tumor growing along the epithelial tissue of the adrenal gland) and micronodular hyperplasia (Micronodules growing along the adrenal gland)

Malignant tumors that could cause Cushing’s include: Adrenal carcinomas (Tumor that similar to an adenoma, forms in the epithelial tissue of the adrenal gland)

What are some symptoms?:

Weight gain in the central part of the body (Thin arms and legs)

Rounded face (referred to as moon face)

Fragile skin, prone to easy bruising and poor wound healing

Muscle weakness

Hypertension

Memory loss

Depression

Sleeplessness

Women may also experience: Irregularity or loss of periods (Amenorrhea) and male-pattern face and body hair growth (hirsutism)

Men may also experience: Erectile dysfunction

Types of treatment available?:

Patients can use medications that target the adrenal glands in order to control the excessive cortisol production. Medications include: Ketoconazole, Osilodrostat, and Mitotane

A more permanent option of treating Adrenal Cushing’s syndrome would be an adrenalectomy, in which patients have their adrenal glands surgically removed.

___

Note: First post and whew, this was really interesting to research the mechanics of Cushing's syndrome itself. It was also cool to find out that tumors just produce hormones?? The body works in really funny way...but anyways to finish off here is a meme I made (it isnt very funny but the background photo's dumb so i still laughed)

[nevadancitizen]

hey i know this is a bit different from my other posts but my dog just got diagnosed with diabetes. i don’t need money (and please don’t offer it), i just want someone who’s lived with a diabetic dog to tell me what it was like for them.

she’s 13 y/o, a blue heeler mutt mix, ~50 lbs, and the sweetest girl ever. i grew up with this dog and i love her with all my heart. it would absolutely shatter me if anything bad were to happen to her, especially if i could’ve prevented it.

i can afford her insulin, her glucose monitors, special diet foods, and i know how to administer her shots. she is showing signs of cataracts, and her bloodwork is showing possible signs of cushing’s disease. if anyone has lived experience and is comfortable sharing, please feel free to comment/dm me.

please do not recommend i euthanize her. i’ve had this dog since i was six. we grew up together. i literally don’t know a life without her. even if you think it’s best, please keep it to yourself.

thank you for your time <3

[hanorganaas]

i finally got a "cushings i know what that is cause a family member has it" from a co worker. its nice not having to spend 20 minutes explaining how my cortisol levels got wonky for a change considering how rare it is.

[astersmelody]

ahhhh. is it a common thing to see chronically ill tags when you are, in fact, chronically ill but your pain isnt as "bad" as other peoples pain so you sometimes question if ur actually chronically ill or just faking (i am legally and professionally diagnosed)

[ashleywool]

72 hours until my in-person callback

...with the neuroendocrine surgeon! 😜

Confirmed: there is a lesion on my pituitary gland which may be either a pituitary adenoma, a Rathke's cleft cyst that's behaving like a pituitary adenoma, or both. Whatever you wanna call it, it seems to be the source of all this crap, and surgery will be the next step.

I am SO grateful to the scheduling team for following through on their promise to call me the second a cancellation came up so I wouldn't have to wait until mid-September. I can't wait to SKIP off the subway into the UES on Tuesday morning (if not physically, then spiritually). I can't wait to MAYBE HOPEFULLY have surgery scheduled by this time next week, to get this stupid tumor thing off my pituitary gland for good.

I'm starting to feel some sadness about the prospect of leaving this apartment. This second-story walkup studio, the first lease I ever signed. This apartment was my dream for so long. For a whole year, I got to live that dream--and for half of that year, I even got to pay for it myself.

It's weird, as a person who believes in disability pride and abhors capitalism, that my two primary goals right now are (1) obtain this surgery so that I can become healthier, (e.g., less disabled), and (2) in doing so, obtain the ability to work as hard as I can, so I will have a shot at attaining financial independence again, and maybe even retaining it this time.

But no. That's not it. What I want is to feel better, so I can do more things that I love, and earn enough of my keep to have my needs met and be able to give back to the world in a meaningful way.

I want to work because there are so many things I enjoy working at. I want to make money because participating in capitalism is the only way to ultimately free yourself from its trappings and help others do the same.

And also, I want to sing and dance and roller skate and walk in the woods and read all the books and pet all the cats and bake cookies from scratch and engage in all the niche fandom content and visit my family and friends whenever I want and host them for holidays without worrying about whether or not I'll have the energy.

Tuesday will bring me one step closer to all of that. Thank God. God is still good.

Just over 71 hours.

[gagfadget]

I miss my cringe ass boo boo fuck nae nae baby ♥️♥️♥️

[sluntch]

A New Challenger Appears - A Writing Experiment - Day 5

Welcome back, if you've been here before. Welcome if you haven't (and also you've got some catching up to do). Today, we deal with a mystery illness and take a bit of a sidetrack from the diet specifically. This one kind of gets turbo personal and a bit NSFW. Ye be warned to continue from here on in. Here we go.

So throughout all of this dieting and going to the doctor and "taking care of myself" or whatever, the doctor's major concern is that I have high blood pressure and that my potassium is, what many in the business would call, "dangerously low". I get a bunch of meds prescribed to me. I currently take 6 different medications at varying points throughout the day, even though none of them have actually managed to lower my blood pressure effectively and the potassium levels have been held in a fairly decent range due to the supplement I'm taking specifically for it. The potassium being the doc's primary concern out of those two led her to refer me to a nephrologist which is a kidney doctor and a word I didn't know existed until I was referred to one. The thought process was that the potassium was being leaked or something through my kidneys and that they, in particular, needed to be checked. In the meantime, everything else also seems to be completely falling apart.

The previous information and procedure all took place over the course of about 10 months. The nephrology appointment took place in August 2023 and was the point at which motion was finally taken to get things rolling in the right direction. Before that point, though, a lot of other stuff started going wrong. Early in the year, I began to have fluid just stick in my retinas, causing blurred vision and issues seeing things, especially in the dark. The eye doctor I saw told me it should go away on it's own and may be related to stress. He referred me to an ophthalmologist who told me the same thing. Ok great! It doesn't go away. It actually gets WORSE, if you can believe it. At the same time, I lose all libido entirely. Like nothing, ever, for months on end. My body, specifically my legs, get insanely weak. We're talking so weak that I can barely walk up the stairs carrying my own weight, let alone anything else, without becoming winded. Wounds I get on my body don't heal quickly, if at all, and some ooze this clear liquid. Bruises stick around for a long time. My hair begins thinning. My face starts to swell up and is very red. This all progresses and worsens over the course of Oct 2022 to Aug 2023. In addition, the swelling from the Venous Reflux - yes, the one I got an expensive surgery to try and fix - is still there. So at this point, I'm starting to get pretty concerned, as is my wife.

The nephrologist appointment led to a short bit of information (the doctor spoke in broad terms and mentioned trying to rule out certain rare diseases), a new medication (the 6th, overall), and an ultrasound of my kidneys. The ultrasound revealed no issues with the kidneys. Dillon, whose mother is a doctor (this will be relevant in a second), while I was over hanging out, did some googling after the ultrasound follow-up appointment. He began reading me the symptoms of something he was reading off of his phone. While he read, we discovered I had every single symptom he was reading. The "something" was called Cushing Syndrome, a disease I had never heard of. As a point, I feel, it's not a great sign when you have every symptom of a disease. Cushing is caused by an excess production of the hormone Cortisol, sometimes known as the "stress hormone". That Cortisol overproduction can be caused by few things: Taking glucocorticoid medications (which don't do) or one of three types of tumors - an adrenal tumor that could be cancerous, a lung tumor that could be cancerous, or a pituitary tumor that is rarely, if ever, cancerous. It also turns out that this syndrome affects, or at least gets diagnosed, in 40-70 out of 1 million people and, of those, 30% are male. So I win a weird lottery and have this syndrome (which we eventually being calling the disease it actually turns out to be, Cushing Disease) that is causing me to feel like I'm wasting away which is ALSO causing all of the other things going wrong, including the high blood pressure and low potassium. Dil asks his mom about it and I ask the nephrologist about it. Dil's mom has me do a peripheral vision test which I don't do particularly well at and she takes this as good news. She believes, based on that, that the cause is a pituitary tumor and those are, apparently, very easy to remove and, once removed, would rid myself of the issue. The nephrologist confirms that, by definition, I have Cushing and they just want to rule things out before moving forward with treatment.

An MRI of my kidneys is scheduled and reveals no issues with them and no tumors. So not the hyper-rare cancerous one. Good news. My PCP weighs in while in conference with the nephrologist and I get an appointment with an endocrinologist scheduled for November 29, something both other doctors involved seem to be attempting to get moved to an earlier date given the diagnosis. An MRI of my sweet sweet brain has been scheduled for Oct 30 and I'm anxiously awaiting that day to confirm the pituitary tumor and get the brain surgery (yikers) schedule moving. In the meantime, I've been only getting weaker and weaker and have injured my right ankle from overuse. As I'm writing this, I'm sitting in my living room chair in a boot after a 5-hour, 2:30 AM emergency room trip taken when I woke up with debilitating pain in my right ankle and an inability to put any weight on it. I've had a lot of emotional swings during this time and, again, cannot thank Abbey and Dil enough for being there for me through all of it. Every day I feel worse and worse but with them around, I can keep moving forward and having some hope that this gets resolved and resolved quickly. Though, if I'm being honest with you, it's getting really tough to keep existing like this. All I want is to feel regular again. It may be close but it still feels very far away and I'm VERY scared of getting brain surgery. We'll see what happens.

That brings us up to the current day. The entries from here on out are going to be, most likely, a smattering of different things. They could be about what I ate or did during a given day or random thoughts that I have or some other such nonsense. I don't really know and am just going to begin treating this as my journal that other people can read. As long as I'm writing, I'll build the habit. Thanks for reading, if you did, and I appreciate you very much.

61 days to go.

[dyslexicorn]

So I won't go on tiktok for literal money but this is....idk..it's something. Because I was one of the "rare cases" where my face WAS swollen from this bullshit tiktok term "cortisol face." I had a tumor on my pituitary gland making my body produce cortisol at an alarming rate. And it was literally killing me. I was an extremely lucky case, in that it only took about a year of diagnostics before I had two surgeries going in through my nose to the pit gland before it was removed. I am still recovering even three years later. Gotta say it feels pretty shitty to find out tiktok is reducing an multifaceted disease that kills people to "your face is fat!"

It's called Cushing's Disease. It can be florid or cyclic. It's debilitating. I was puffy, red, constantly tired, over heated. I gained 100 pounds in less than a year. I couldn't walk any significant distance. My heart rate was 133 bpms resting. My heart now has an enlarged left ventricle which I will probably have the rest of my life. I only narrowly escaped massive medical debt because of a fluke of insurance I happened to have. To hear that there are people peddling the thing that tried really hard to destroy my life as an explanation as to why someone does or doesn't look a certain way is just the brand of fucked up I expect from tiktok.

If you think you might have this disease I urge you to ask your doctor or endocrinologist for a cortisol urine and cortisol blood serum test to get checked out. It's real and allegedly rare, but this isn't time for my speculations on that.

So while it isn't a made up trend, it is a very real, very painful and damaging disease. I'm not really sure why I wrote this. Just that it upset me and I figured I'd crawl out of my cave to write about a singular thing I can actually speak to. Thanks for coming to my ted talk I guess.

Oh you think you’re fat? Actually you have CORTISOL FACE! Yeah buy this useless product on TikTok shop and follow me for more misinformation and general panic about the next made up trend.