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 didn't quite reflect all the symptoms that I and my friends on the Cushing's message boards faced daily. The medical sites always listed their top 10. This has always perplexed me, because it is widely known that Cushing's, or excess cortisol, affects every cell and system in the body. Therefore, those medical sites 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: 
We Cushing's patients have such an acute awareness of Cushing's oftentimes because we are driven to figure out what is wrong with us. 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. So many times, doctors have scoffed at us or outright laughed at the mere suggestion that a symptom we question could be related to excess cortisol. Scorned, we turn to the Cushing's community for validation, and we usually get it. The pituitary is the master gland and 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. Eleven years is a lot of time I've been reading Cushing's stories online, and that is one thing I know for sure. 

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 and 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)

The symptoms of Cushing's result from an excess of cortisol. Most patients develop at least a few of these symptoms, and the symptoms typically worsen over time. However, each person's symptoms depend upon several factors, including:

CUSHING'S SYNDROME SYMPTOMS
The symptoms of Cushing's syndrome result from an excess of cortisol. Most patients develop at least a few of these symptoms, and the symptoms typically worsen over time. However, each person's symptoms depend upon several factors, including:
The degree and duration of cortisol excess
The levels of other adrenal hormones
The underlying cause of Cushing's syndrome"
Source: "Cushing's: Beyond the Basics" (Aug 2018)
GENERAL HEALTH
Can you keep up with the grandmas in your life? Cushing's gives us "old people ailments" not normally seen in younger patients, such:
  • high blood pressure
  • type 2 diabetes, high blood sugars or hypoglycemia, glucose intolerance
  • osteoporosis or frequent bone breaks from little impact
  • narrowing social life
  • suppressed or weakened immune system, "always sick," reoccurring infections
  • kidney stones
  • acid reflux
  • blood clots that cause stroke, pulmonary embolism, or deep vein thrombosis
  • urinating in the middle of the night
  • loss of balance, frequent falls
  • extreme fatigue
  • poor memory
  • slow word recall
  • cataracts or glaucoma
  • shingles
MUSCULOSKELETAL CHANGES: Excess cortisol causes the muscles of the upper arms and legs/hips to become weaker. 
• muscle wasting; heavy arms and pain in legs
      difficulty holding up blow dryer
      getting out of chair
     • climbing upstairs
      standing
     • failed squat test (squat, can't get back up without assistance)
• loss of balance, frequent falls
• 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
• bone loss that leads to 
     • "bad teeth" that crack easily
     • broken bones
     • osteopenia or osteoporosis (especially at a young age) 
• growth retardation/ stunted growth in children

KiDNEY ISSUES/ ELECTROLYTE IMBALANCE
• nocturia (urinating during the night)
• polyuria (volume of urine is high)
• excessive sweating for no reason
• temperature control issues (hot when cool out; cold when hot out)
• pitting edema (swelling) in legs, feet, ankles

SKIN CHANGES
• progressive weight gain of ___ in ___ months despite careful exercise and nutrition control with food diary
• weight gain in the neck, trunk, and abdomen called central obesity, look pregnant
     • skin that hangs down below your belly button called pannum
     • moon facies (roundness of the face); can’t see the ears of a Cushing’s patient
     • supraclavicular fat pads (collar bones aren’t visible; compare to Hollywood actresses on red carpet)
     • buffalo hump at base of neck; hump can be hard or soft; painful when hard; sometimes difficult to turn our necks; place four fingers sideways on the back of your neck with pinkie touching hair line...your forefinger will be touching the top of buffalo hump   
• thin and fragile skin
     • facial plethora (red cheeks look like rosacea)
     • skin tears easily (bandage removal)
     • skin or injuries slow to heal   

      bruise easily
     • infections 
     • red/ purple striae/ stretch marks (small to very wide makes on abdomen and breasts but can also affect thighs and armpits) (only 50% of patients will have this, NIH 2017); striae rubra (red) can fade to striae alba (lighter than skin) in cyclical Cushing's patients 
• acanthosis nigricans (darkening of skin from insulin resistance) typically seen on elbows, knees, knuckles, arm pits, back of neck
• brittle nails
• acne 
• pimples, boils (furuncles) or hidradenitis suppurativa in skin folds in arm pits, under breasts, groin, buttocks
• skin tags
• psoriasis

SLEEP TROUBLE/ FATIGUE

• exhaustion/ extreme fatigue plus insomnia; want to sleep but can’t
• if asleep at night, then waking up at 4 am for “no reason”
• insomnia, wired at night
• inability to fall asleep or inability to stay asleep
• extreme daytime fatigue
• extreme fatigue in afternoon, then second wind that keeps you up all night, crash at 4-6 am, wake 10a-12p
• night sweats, sometimes drenching clothes
• anxiety 
• irritability
• hostile/ short fuse
• don't want to 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
• difficulty focusing
• loss of motivation; incomplete projects

MENTAL HEALTH

• personality changes
• emotional volatility
• crying
• rage
• overwhelmed
• medication-resistant depression = depression that fails to respond to medications
• social anxiety/ limited socializing
• suicidal thoughts

COGNITIVE CHANGES

• brain fog
• confusion
• sluggish brain
• delayed word recall
• poor memory
• running into door jams/ scraping arms as you pass through
• blurry vision/ double vision
• keratoconus (steepening of the cornea)

HEART ISSUES:  Excess cortisol raises blood pressure and puts stress on the heart and vascular system.

 high blood pressure
 cardiovascular disease 
• blood clots 
     • need for blood thinners 
     • could lead to deep vein thrombosis, pulmonary embolism, stroke

VISION CHANGES
• headaches
• loss of peripheral vision
• tripping and clumsiness
• eye pain
• ptosis (eye drooping)
• cataracts
• glaucoma

HAIR CHANGES
• hirsutism or unwanted, male-pattern hair growth in women
     • dark, coarse hair on body areas such as face (lip, chin), chest and back
     • balding that causes thinning hair at temples or hair loss in clumps
• texture of hair changes: curly hair goes straight, straight hair turns curly 

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

ISSUES WITH OTHER ORGANS
• peptic ulcers
• pancreatitis
• fatty liver
• high calcium (get tested for MEN-1)

That is quite a list, right? High cortisol really put our bodies through the ringer. 

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.

To print this list (will return to provide this), go to this version which omits the Cushing's body graphics.

Be sure to read my article, "Gambling on a Cushing's diagnosis" which can help you convince your doctor to send you to an endocrinologist or test you based on the probability that you have all these symptoms at the same time.

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