Friday, May 11, 2018

Comprehensive List of Cushing's Symptoms collected by a Cushie

I've spent the last 11 years of my life surviving Cushing's and its aftermath by immersing myself in the patient community online. I noticed fairly early on that the symptoms listed on the websites of the  major medical centers were so inadequate and sparse. They always listed the top 10, which for a disease that affects multiple if not all systems in the body, doesn't really cover the extent of the damage we patients know that uncontrolled, excess cortisol causes.

To see for yourself, take a look at the websites for these major medical centers: 
You have seen me write that patients have such an acute awareness of Cushing's oftentimes because we ask each other online if the strange symptoms we have can actually be caused by excess cortisol or other disruption to the hypothalamus-pituitary-adrenal axis, also known as the HPA axis. Since the pituitary is the master gland which controls the hormones made in the body, you can sure bet that there are many more symptoms that Cushies commonly face than the medical community is presenting to us.


To rectify that and to educate as many patients as I can about this deficiency, I have prepared the following list over the past several years. I haven't published it before now because it took me a while to remember all the symptoms. Now, I feel it is 98% complete, and that has to be good enough for me to post.

Please note that I don't expect for you to have every symptoms on this list. I don't have every symptoms and it is likely no other Cushie will have every symptoms. However, the real question is: 

From this list of 80 symptoms, how many don't apply to you?

If it were only this simple.
Please take note of which symptoms do not apply to you.

have     not       % Cushing's
                    symptoms I have
 75         5          94%
 70       10          88%
 65       15          81%
 60       20          75%
 55       25          69%
 50       30          63%

So as the table shows, you could go through this list, not have THIRTY symptoms, but still have nearly TWO-THIRDS of the symptoms of Cushing's. That is really quite remarkable. Please use this list to pursue a proper evaluation for Cushing's and any disruption to the HPA axis. For tips on how to do that, check out one of my first posts to my blog, "Tips to Steady your Feet & Get Diagnosed Quickly

Cushing's symptoms you can see

Before I reveal the list, I thought I'd show you the plethora of diagrams showing these freakish changes high cortisol causes. Even these diagrams vary! I am convinced there is no way to make an infographic that lists all the related Cushing's symptoms. There are just too many!!

Do   you   see   yourself  in   these   images?

 















*Symptoms caused by Prolonged Exposure to Excess Cortisol*
(compiled by Moxie MelissaTX over the years (www.cushingsmoxie.com)

GENERAL HEALTH
• "old people ailments" not normally seen in patients your age, such as cataracts, high blood pressure, diabetes, osteoporosis, shingles,extreme fatigue, poor memory, slow word recall, narrowing social life
• high blood sugars or hypoglycemia
• glucose intolerance or diabetes type 2
• high blood pressure
• reoccurring infections
• suppressed immune system, “always sick”
• acid reflux
• peptic ulcers and pancreatitis
• kidney stones
• high calcium (get tested for MEN-1)
• weight gain of ___ in ___ months despite careful exercise and nutrition control with food diary, yet still no weight loss
• central obesity, looking pregnant
• skin that hangs down below your belly button, called pannum
• pulmonary embolism

SLEEP TROUBLE
• exhaustion/ extreme fatigue plus insomnia; want to sleep but can’t
• extreme daytime fatigue
• extreme fatigue in afternoon, then second wind that keeps you up all night, crash at 4-6 am, sleep past 10 am
• insomnia, wired at night
• inability to fall asleep or inability to stay asleep
• if asleep at night, then waking up at 4 am for “no reason”
• night sweats, sometimes drenching clothes

MENTAL HEALTH
• personality changes
• anxiety 
• irritability
• emotional volatility
• crying
• rage
• hostile/ short fuse
• overwhelmed
• medication-resistant depression = depression that fails to respond to multiple depression medications
• won’t commit suicide but wouldn’t mind not waking up
• loss of hope, can’t see light at the end of the tunnel
• loss of interest in hobbies
• social anxiety/ limited socializing
• suicidal thoughts

COGNITIVE CHANGES
• brain fog
• confusion
• sluggish brain
• delayed word recall
• poor memory
• difficulty focusing
• loss of motivation; incomplete projects

VISION CHANGES
• headaches
• loss of peripheral vision
• running into door jams/ scraping arms as you pass through
• tripping and clumsiness
• blurry vision/ double vision
• eye pain
• ptosis (eye drooping)
• cataracts

MUSCULOSKELETAL CHANGES
• muscle wasting (difficulty holding up blow dryer, getting up from chair, climbing upstairs, standing)
• failed squat test (squat, get back up without assistance)
• heavy arms and pain in legs
• loss of balance, frequent falls
• broken bones
• osteopenia or osteoporosis (especially at a young age)
• children can experience growth retardation/ stunted growth

• pain in the feet upon waking, difficulty walking; docs call this plantar fasciitis
• dropping things from the hands when you think you are grabbing on tightly

KiDNEY ISSUES/ ELECTROLYTE IMBALANCE
• nocturia (urinating during the night)
• polyuria (volume of urine is high)
• unexplainted excessive sweating
• temperature control issues (hot when cool out; cold when hot out)

HAIR CHANGES
• hirsutism (excess facial on lip, chin, body); females 
shave face; hair is often black and coarse
• thinning hair or hair loss in clumps
• texture of hair changes: curly hair goes straight, straight hair turns curly 

SKIN CHANGES
• facial plethora (red cheeks look like rosacea)
• moon facies (roundness of the face); can’t see the ears of a Cushing’s patient
• buffalo hump at base of neck; hump can be hard or soft; painful when hard; sometimes difficult to turn our necks
• supraclavicular fat pads (collar bones aren’t visible)
• red/ purple stretch marks (small to very wide makes on abdomen, breasts mainly, can also affect thighs, armpits) (only 50% of patients will have this, NIH 2017)
• acanthosis nigricans (darkening of skin from insulin resistance) typically seen on dark elbows, knees, knuckles, back of neck
• bruises easily
• pitting edema (swelling) in legs, feet, ankles
• brittle nails
• thinning skin that can tear easily (i.e. bandage removal)
• skin slow to heal or injuries slow to heal
• acne 
• boils (furuncles) or hidradenitis suppurativa (boils in groin, buttocks, arm pits, under breasts or fat rolls)
• skin tags
• psoriasis

REPRODUCTIVE HEALTH
• infertility
• loss of libido
• inability to orgasm
• women: irregular menstruation or lack of menses
• men: erectile dysfunction

What do you think? Did I miss any symptoms? Feel free to comment below and tell me. I'll research your suggestions in pubmed and Google Scholar, and maybe I'll add it to the list! In the future, I hope to hyperlink each symptom in the list to other sites that mention the symptom's relationship to the HPA axis.

Be sure to like my facebook page: Fight Cushing's with Moxie. Bye for now!