Cushing's Syndrome

Join the Conversation on
Cushing's Syndrome
548 people
0 stories
23 posts
About Cushing's Syndrome
Explore Our Newsletters
What's New in Cushing's Syndrome

Cushing's diagnosis-questioning my dr

I have read up on #CushingsSyndrome for quite some time given I have the physical appearance symptoms that come with that dx and all of the body dysfunction symtoms like extreme #Fatigue , poor wound healing, #Anxiety /depression, I've even broken bones from a fall that shouldn't have resulted in a break. I tested positive for too much cortisol for a low dose overnight dexamethasone test. Since I tested positive for the low dose they did a high dose suppression test which from all my results is used to differentiate why the cortisol was high in the first test. My endo messaged me after the second test and basically said nm your #Cortisol levels are normal?!? We're not going to look in to all your symptoms any further. WTH? What would you guys do if you were in my position?

2 reactions 5 comments

Sick, suicidal and it's getting worse

Hi, I'm new here, but I am not new to chronic illness. In 2013 I was diagnosed with autoimmune chronic kidney disease, Hashimoto's Thyroiditis, and chronic Lyme Disease. This year, the doctors added Lupus, Fibromyalgia, and Graves eye disease. I've dealt with exogenous Cushing's syndrome from super high doses of prednisone, I live with CPTSD and chronic nightmares.

I'm just really struggling to find meaning. I'm struggling with feeling like I deserve to be alive. I don't think I do. I've been living with chronic illness for 10 years and it's not getting better... it just seems to get worse. I started very optimistic -- even ended up in remission five years ago -- but that quickly ended and now I have new diagnoses to navigate. I'm not sure how much more I can take.

No support system. No family. I have a partner, but his life is made all the worse for my being in it. I see him suffering, watching me suffer. I cannot tell him what is really happening. He cannot take any more. I am alone in this fight, in this body. I doubt anyone will read this. I'm just writing to write, I guess. It's been written that the deep depression that follows grave illness could be avoided if the person afflicted has a deep enough investment in life... I have none.

Has anyone been here? If so, how did you pull yourself out? I've been here hundreds of times, but none of my tactics work now. and I'm getting scared.

21 reactions 3 comments

I'm new here!

Hi, my name is K_Lynn1376. I'm here because I was diagnosed with Cushing's syndrome in September and had an adrenalectomy on 10/31/22. This has left me in Secondary adrenal insufficiency. I learn all I can about both conditions to have the fullest life I can.

#MightyTogether #cushing 'sSyndrome

1 comment

Physical health #CushingsSyndrome #svt #Steroids #MyalgicEncephalomyelitis #atopy

Home from hospital now, so happy to see my children. The worst part of all this is how suddenly i become unwell and end up in hospital and have to leave them with someone else. Looks like my heart is the issue, i went into SVT and they had to give me IVs to stablise my heart rate. Looks like it could be cushing syndrome too, and steroid induced diabetes with my blood sugars going above 20. They’re looking more into what’s going on with my heart and I’m now going to be under the cardiologist, as well as the thoracic clinic too with my usual respiratory consultant. Will have occupational therapy, respiratory nurse to visit at home as well as speech and language to help with my voice and swallowing problems. We are going to try and reduce the steroids a bit as currently on 50mg and have been for ages. The weight should start to fall off with the reduction too. My new wheelchair comes tomorrow one i can wheel myself rather than being pushed so will give me some freedom. Been a really awful few months, they want me to do counselling because of how much my life has changed and how limited i now am and they said they can arrange it for me though I already have a private therapist so not sure what I’m going to do yet.

1 comment

The fear in waiting.

I just had an #Endocrinologist appointment that ended with bloodwork. Now I'm in that dreaded stage of waiting. I may have had every single symptom that checked the boxes for an endocrine problem, specifically #CushingsSyndrome , but you know... that's happened before. As someone who has spent their entire teen and current adult life suffering through doctors and their tests, most of them coming back negative, I'm used to this. But this time...I really need to have an answer. An answer with a solution, no more incurable diseases. If its Cushing's, which I hope it is, I'll just get the snip of a benign tumor and return to my typical homeostatic state of #EhlersDanlosSyndrome . I really just need some support during this time, and good vibes I have solid answers instead of "rule outs." #ChronicIllness #ChronicPain #Asthma #HypermobileTypeEDS #IrritableBowelSyndromeIBS #AcidReflux #GastroesophagealRefluxDisease #BellsPalsy #Tachycardia #CheckInWithMe #Undiagnosed

See full photo

emotional support best friend

recently i almost lost my love of my life & emotional support animal.. boop.

she is the most amazing soul & a registered therapy pup, she’s touched SO many lives. i’ve been the luckiest person solely bc of her. she is & has been my only reason to fight & press on through chronic illness.

suddenly she got SO sick, after thousands++ of dollars in tests & specialty vets she was diagnosed with cushings disease as well as diabetes, she also completely lost her sight within a week :(

so we’ve been learning together how to do 2x a day insulin shots & cushings meds & how to help her navigate the world without sight.

so, i have completely abandoned all of my medical or life needs to make sure i continue to do anything & everything possible to get her back to healthy.

she & i have always done one thing over all else: take care of each other.

but i have to say, what do you do when your support animal (& best friend in the universe) becomes the one who needs the most support? how do i maintain the level of care & medicine she needs without neglecting my own to such an extent i am in no condition to take care of either of us?

how to deal with THIS many chronic illnesses? how is this real life??

most exhausting soul crushing year ever, send good vibes & love

xo, kat n boop

#Lupus #EmotionalSupportAnimal #CushingsSyndrome

See full photo

#tiredoffighting #CheckInWithMe

Today is one of those days where everything just sucks. It starts off with a conversation I'm having about my passion for improving my workplace with my girlfriend ending in a lack of understanding and words my mom says that is often followed in the next hours/days with gaslighting and passive aggressive statements.

Then it carries on with a poorly tracking knee and hyperextended elbow, headache, and overwhelming fatigue. This fatigue has been growing so much and triggering other symptoms. But, I gotta help clean the house because my mom is leaving for #BreastCancer check up for a few days.

I do that and then go to my orthopedic appointment, who while unable to help with current muscular pain did finally perscribe me pain medication for 9-10 flare days. (Heck yeah!) But he's concerned with the increasing fatigue, dysautonomia, and need to rest for hours to days on end. So, once again I'm referred to a specialist, an endocrinologist.

So I may have #CushingsSyndrome , which would explain a lot yet is ANOTHER DANG THING I have. I don't understand why there is not a cap on what us mere mortals can endure. I'm just so tired. All the time. And nothing I do can really help other than attempt rest.

I need to find my hope again today, cause really I'm not seeing it. #EhlersDanlosSyndrome #Dysautonomia #Asthma #AcidReflux #ChronicMigraines #ChronicPain #ChronicIllness #HypermobileTypeEDS #Fatigue