Wednesday, June 4, 2008

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.