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.

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To see for yourself, take a look at the websites for these major medical centers: 

• American Association of Endocrine Surgeons
• Cedars Sinai (Los Angeles)
• Emory University (Atlanta)
• John Hopkins 
• Massachusetts General Hospital/ Harvard
• Mayo clinic
• NIH: National Institute of Diabetes, Digestive, and Kidney Disease
• Oregon Health and Science Center
• Pituitary Network Association's "list of the top pituitary and hormonal health hospitals in the world"
• UCLA
• University of Texas Southwestern (Dallas)
• University of Virginia
• Vanderbilt

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:

●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
  
• bursitis (my most recent addition)

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, groin, buttocks or under breasts, stomach flab or 'pannum'

• skin tags

• psoriasis

SLEEP TROUBLE/ FATIGUE
• 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, wake 10a-12p
• 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

• night sweats, sometimes drenching clothes

MENTAL HEALTH
• personality changes
• anxiety 

• irritability

• hostile/ short fuse

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

• 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

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

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

• high blood pressure

• cardiovascular disease 

• heart arrhythmia

• tachycardia

• 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
• keratoconus (steepening of the cornea)

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 (amennorhea)

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.

I've included some articles I wrote to help get you started here: Initial Cushing's work up

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.

Be sure to like my facebook page: Fight Cushing's with Moxie to be the first to get new articles I post here on my blog. Also, feel free to search for me on Facebook at Moxie MelissaTX or moxiemelissa at symbol gmail dot com.  I am happy to answer your questions, help you find the right type of group for online patient support. We even have groups for patients in every US state!  There are Cushies everywhere. Be sure to create a safety net around yourself and get support. No one understands how terribly devastating and life-altering Cushing's is like other Cushing's patients.

Boom & Bust: Stress Fuels Market Crisis

As a blogger and patient advocate, I always strive to explain the Cushing's experience in a way that caregivers, family and friends will understand. My hope has always been that if they really understood the damage we face, perhaps our support system would encircle us and protect us as we walk a very difficult road to remission. This does not happen as often as it should, despite nearly four years of blogging, but I am hard-headed. So, I keep trying.

To that end, I am thrilled to share this article, "Boom & Bust: Stress fuels market crisis." This article provides  fascinatingly detailed look at the roles stress and cortisol played during the financial crisis. Cortisol is cited for changing the bodies and personalities of risk-seeking stockbrokers as they faced an uncertain market future. 

The author even names cortisol "the molecule of irrational pessimism." 

I hope you will take a few moments to read this article, and please understand that the changes these brokers faced during the crisis are the same struggles we Cushing's patients face every day, for years and years. While I am not asking for empathy for stockbrokers, per se, I am asking you to read this article with Cushies in place of the stockbrokers. Reading about their symptoms may help you see your Cushie in a new way. If it does, hold her or him a little tighter, and admit you learned something about this illness. Your stock is sure to rise, as it will be music to your loved one's ears. 

Click through to the original article on the Montreal Gazette.

My Odd Assortment of Symptoms now have a Place to Land!

I recommend making a list of symptoms in the TIPS post above.

Please review my discussion about how Cushing's patients often display different sets of symptoms, also listed in the TIPS post below.

I realize this is very personal. However, I feel that sharing my list of symptoms may highlight some symptoms that you have but never attributed to Cushing's.

• Missed periods. I have missed 10 of the last 24 menstrual periods. Confirmed no pregnancy with multiple hCG blood tests.
  
• Buffalo hump. Pronounced hump at the base of my neck. Extreme soreness-inability to turn head: dated back to 2004. I missed several days of work because I was unable to move/lift my neck due to soreness.
  
• Central obesity. I have gained 70 pounds in 4 years, gaining weight for over 12 years. Inability to lose weight.
  
• I eat pretty well (no white foods, fast food, ice cream, sweets, candy bars, sodas, pasta, salt or sweet cravings).
  
• I eat whole wheat, whole grains, fruits, veggies, drink water. Very difficult to lose weight and keep it off.
  
• Hair is falling out. Started July 2007. Ferrittin level dropped from 44 to 20 from March to August 2007. Normal range is 10-291.
  
• Acid reflux. Started June 2007. Cortisol highs correlate to hump pain, facial acne, acid reflux, high energy particularly after sundown, low body pain.
  
• Roundness of the face. Cheeks are very round in profile photos, but not red (I have a tan complexion). Growing double chin.
• Pink stretch marks on the abdomen and upper hips/thighs.
• Headaches. Rarely had them before (less than 1 per year), but have been getting them more in the past 2 years (10+ per month).
• Blurry vision. There are times when I just can’t see out of my glasses or contacts. I blink a few times, and my vision returns in 1-2 minutes. Recent eye exam (April 2007) indicates that my vision has not changed since October 2005.
• Bumping into things. Run into low objects, scrape door frames very regularly. Loss of peripheral vision often associated with pituitary tumors. Unsteady gait and balance issues.
• Inability to focus or concentrate. I have always been a person who takes charge and gets things done. Now, I just can't follow through. I forget a lot. I can’t remember the words of basic items. Even simple tasks seem much more difficult. Confused.
• Stuttering. I feel like my brain is working faster than my mouth, and I stutter to get words and sentences out.
• Mood swings. Sometimes content. Sometimes screaming and violent (throwing things). Very irritable. Easily upset. Little things set me off. Overwhelmed by the life's daily requirements. Very frustrated.
• Depression, anxiety, feeling of hopelessness, isolation. Easily overwhelmed by change and stress. Crying many times a week. Being lonely but not wanting to be around anyone. I don't feel like myself.
• Suicidal thoughts. Periodically in 2006 and 2007.
• Hair pulling or trichotillomania.I have been pulling out my hair since I was a child. I can remember doing it while watching TV, especially football on Sundays. I searched for certain hairs, thicker ones, then I would give it a good yank. I felt relief. Then I would hunt another. I did this until there were piles of hair on my pillow. My mom would see me with my hand in my hair and she would yell for me to stop. I would until she left, then I picked up right where I left off. In 2002, I saw an article in Self magazine about skin picking and hair pulling. I couldn't believe it had a name! Skin picking was called neurotic excoriation, and hair pulling was called trichotillomania. I did both! I researched on the internet and found Trichotillomania Learning Center (TLC) and I was very close to seeing a national specialist who happened to live in Houston. I called and emailed her several times about behavioral treatment, but alas, I didn't have health insurance and her office was on the busiest side of Houston. I was forced to pass up treatment. I only added neurotic excoriation and trichotillomania (below)to the list in June 2009, after pituitary surgery, as I have realized my nails are down to numbs again aftering being on such a high dose of hydrocortisone (synthetic cortisol) for the past 17 days.
  
• Anxiety/nervousness, resulting in neurotic excoriation. I have terrible nails and I am neurotic about getting them to feel "straight" or "even." I pick at my nails without even knowing I am doing it. When I realize, I stop, only to do it right away again mindlessly. In 2001, I finally decided to pay $30 a month or so to have my nails done because I would leave my hands and toes alone if someone made them look nice for me. I went from salon to salon, and I got tired of each manicurist saying, "These nails so short. Don't chew them. Don't ruin them." I was and am embarrassed by the way my nails look. I admit that I can't relax, and I'm a nervous wreck during the mani/pedi. I become intensely focused on whether they will smooth out all the edges so I won't pick them, and if they are going to do it without making me feel like a freak about it (eye rolling, deep sighs, etc). I made due by going to the same nail salon and manicurist for the past 8 years, and I explained to her about my problem and that I needed her help. Right before she put on the nail polish, I would rub my fingers along my toe nails and finger nails, pointing out any edges I perceived to sharp or uneven. She dutifully filed and buffed them down and presented them back to me for my final approval. This often took several rounds, but she always patient. If she minded, she never told me, which I appreciated (thanks Joann). I tipped her big for all the extra time she spent. Like $8-10 tip every time.
  
• Severe fatigue, weak muscles, lack of energy.
• Muscle soreness/pain. I struggle when I get up from a chair, go up the stairs. Arms, legs, back, and neck hurt. Very difficult to stand for even short time periods.
• Joint pain. Shoulders seem to pop and grind. Tightness in joints sometimes daily (fingers, wrists, elbows, knees).
• Edema. Moderate swelling in my legs, back of knee joint. Pitting edema some days. Chiropractor notes loss of muscle tone. Severe pain even when mild touch is applied (15 pound kitten walks over or chiropractor moves my body for adjustment).
• Moderate hypertension. My blood pressure has increased to 130s/high 80s or 90s since 2005. Now controlled to 120/85 with 1500 mg of Metformin.
• Heart palpitations/chest pains. 4-5 per month, last 10 months. Stabbing pain (left side) x 2 in October 2007.
• Uncomfortable at night with hot flashes.
• Insomnia, restlessness during sleep. Never feeling like I am well-rested. More snoring in the past 2 years.
• Very active dreams make me exasperated upon waking. High ACTH levels (78, 105) occur at 4 am, related to pituitary tumor activity.
• Decreased libido.
• More facial hair on upper lip and eye brows than normal. Must wax every 3 weeks since 2001. No other hirsutism noted.
• Acne. I have great skin, and rarely get acne (maybe 2 pimples per year). Now, I have an oily face, with pimples particularly in my hairline. Also, I have pimples and white bumps on my face, pimples/rough skin on upper arms.
• Body odor. Hormonal change. If I shower at night and don’t put on deodorant, my arm pits stink very badly in the morning. New in Summer 2007.
• Darkening of skin between my upper thighs, arm pits, waist line, under breasts. New in Summer 2007.
• Bruising easily. Slow healing. Mosquito bites, cuts, and scrapes take longer to heal (4 to 6 weeks). Bruises last longer.
• Dry skin on arms and especially legs. Skin is extremely dry and scaly.
• Skin: thin and sensitive, particularly to adhesives. Band aid ripped skin off in 2 cm area; left sores in two other areas. July 2007.
• Itching/rash in body crevices. Under breasts; area between pubic area and thighs. Started September 2007.
• Diarrhea. Loose bowels for over 18 months, daily for over 12 months.
• Several 'normal' thyroid panels despite symptoms of mental and physical sluggishness, heat sensitivity, cold intolerance (hands and feet), fatigue, brittle/weak fingernails, dark circles under eyes. Several years now.
• Low core body temperature has always been lower than 98.6 degrees (typically 97 to 98 degrees). This is related to metabolism, also endocrine-related.
• Alcohol sensitivity. 2 occasions in Summer 2007. Inability to enjoy alcoholic beverages. Results in 1) Sudden and severe headache within 20 minutes; 2) Shortness of breath; 3) heat intolerance.
• Seborrhoeic dermatitis. Flaky yet oily little patches on my scalp, maybe a couple of millimeters big. A little bit crusty. Results from body's suppressed immune system.
• Eye twitching, intermittent for days on end. Started September 2007. Often related to pituitary tumor activity.