Cushing's Info

YAAY I've joined! My name is Selva...my husband, Joe, has NOT been diagnosed with Cushing's, but has many of the Cushing's symptoms. He is not as computer literate *we're working on that*, so I'm the designated driver for now. We are both so frustrated with the doctors/endocrinologists that he has seen! He has had a lot of stress in his life, mainly due to me *not kidding...LOL* I was diagnosed with congestive heart failure brought on by cardiomyopathy (an enlarged heart) just a few weeks after we began dating in 1995. We owned an antiques shop for twelve of those years until we had to close it in 2007 due to mysecond bout with cardiomyopathy...I was placed on the UNOS heart transplant list. I tell you all of this, so that you understand just how much stress he [we] are under. The doctors we've been to dismiss stress as a factor in all this *hey, we all know bettah!*

I tried to make this short, but there is really no way to do that, so please bear with me as you read, and let me THANK YOU for taking the time to do so! At this point Joe is without a diagnosis and going to see his primary care physician today (10/6/2009). Below are a list of the symptoms that he has, or has had. This is straight off of the checklist on this site...category by category...we realize some are repeated, but we were thorough. :)

Fatness of the face
Unexplained sudden weight gain
Weight gain in upper body only (mid-section)
Buffalo hump (on the shoulders where they meet the neck)
Thinning arms and legs
Weight loss
Pink stretch marks (not very prominent)
Diminished resistance to infections
Easy bruising with poor healing after cuts and bruises
Acne
Skin rash on face...particularly the cheeks and forehead
Multiple skin tags
Oily skin
Excessive sweating
Sweating and hot flashes
Below normal temperature
Increased sensitivity to cold
Temperature regulation abnormalities
Feeling cold when others feel hot
Low body temperature
Elevated fever, higher body temperature
Hot flashes, flushes, night sweats and cold flashes, clammy feeling
Osteoporosis
Carpal tunnel syndrome
Enlarging feet
Loss of muscle tone
Proximal muscle weakness
Weakness in lower extremeties (can't get up from squat, difficulty climbing stairs), weakness in arms and hands (hand pain, lack of grip)
Widespread pain and muscle stiffness, especially on waking (thinking he slept wrong)
Aching, sore joints, muscles and tendons (includes carpal tunnerl syndrome)
Carpal-tunnel syndrome
Joint Stiffness
Bone, joint and muscle aches, inflammation, and pains
Backaches
Tendinitis
Increased tension in muscles
Severe fatigue, weak muscles, lack of energy
Decreased energy
Muscle weakness
Tingling in legs (charlie horses)
Pain and tenderness throughout the body
Dry eyes and mouth
Blurred vision
Bulging eyes
Jerking, rapid involuntary eye movement
High blood pressure and high blood sugar
Hypertension
Heart palpitations
Rapid heartbeat
Increase in LDL cholesterol
Moodiness, anxiety and irritability, confusion
Personality changes (even though he's a Gemini)
Mood swings
Difficulty concentrating, disorientation
Loss of interest in usual hobbies and activities
Decrease in sexual function
Disturbing memory lapses
Cognitive problems, such as concentrating and remembering
Nonrestorative sleep; waking feeling unrefreshed or more tired than before sleep
Trouble sleeping through the night (with or without night sweats)
Lethargy
Low vitality (fatigue)
Chronic, crashing fatigue
Increased drowsiness
Sleep apnea
Snoring
Exhaustion after minimal effort or exercise
Insulin resistance
Diabetes Type2
Irritable bladder syndrome, frequent urination
Gastrointestinal distress, indigestion, flatulence, gas pain, nausea
Nausea
Sudden bouts of bloat
Headaches
Increase in allergies
Premature aging: gray hair, decreased energy, decreased sexual function, increased body fat, osteoporosis
Swelling of the face
Bulging eyes
Weight gain
Weight loss
Sweating and hot flashes
Dry skin
Warm, sweaty skin
Anxiety, feeling ill at ease
Fatigue, malaise
Lethargy
Hypogonadism
Absent desire for sex


1995 Joe has been thin all of his life up to this point...ran 10 miles a day and did a few marathons and weighed 130lbs. I noticed that his face was changing within a month of us dating...but that soon passed. We opened our antiques and collectibles shop.

1996 We got married (short and sweet for less stress!).

1997 Late this year he began gaining weight and hit 175lbs...his face was becoming rounder (as opposed to his long thin normal face...LOL). He put himself on a stricter diet and began losing weight.

1998 He lost some 40-50 pounds fairly quickly, but he was still over his ideal weight and couldn't seem to take it off, even with rigorous exercise. Slowly began to gain weight towards end of the year.

1999 Early this year, the weight shifted to just around his midsection...his arms and legs didn't change at all...and his face was becoming round.

2000 By May of this year he weighed 208lbs...we attended my cousin's wedding and the foto we took looks nothing like him! When we saw the fotos, I immediately took him to the doctor...he was diagnosed with Type 2 Diabetes, high blood pressure and high cholesterol *the deadly three*. He had the "classic symptoms" of most diabetics...he had not really developed the fat pads on his shoulders just yet. He bagan taking Metformin. Began taking meds for high blood pressure and high cholesterol. He had to "play" with the high blood pressure meds to get them to work for him. He began complaining about being tired all the time...had bouts of mood swings. Testosterone levels were 216 and doc thought they were fine, even though he was below normal range (300-900).

2001-2006 During this time, his weight stayed within 208-215lbs, tired all of the time and very moody. We were working the antiques shop full time (that's 7 days per week!); we sold our house in 2004 and moved into another in 2005. One day when I was giving him a massage, I noticed these strange "bumps" (slightly raised at the time) where the shoulders meet his neck. He had never noticed them, but went to see the doc and had x-rays done...diagnosis: NORMAL! Once we settled into the new home, he put himself on a strict diet and worked out hard for almost a year and a half...by this time he [anyone] would've lost 50-60lbs...he lost 2lbs (yes...TWO!)!!! He went to see his doctor and was told that it was probably his diabetes causing havoc and recommended he see an endocrinologist. A month passed and we finally got in. We mentioned lupus and cancer in his family, and that we suspected Cushing's, so the urine test for cortisol levels was done...diagnosis: NORMAL and within range! Joe showed him the fat pads, which now looked like someone cut a grapefruit in half and placed a half on each side aaaand they were uneven!  The endo ordered an MRI. Diagnosis: OVERGROWN MUSCLE!!! *OMG! I was in disbelief! Are these guys doctors?!* Obviously, Joe was livid and refused to go back to any doctor! I began to get sick so we decided to close shop by year's end (auction, big blow out sales and all the stress that goes with closing shop).

01/2007 I was hospitalized and had a defibrillator/pacemaker installed and placed on the UNOS heart transplant list. My diagnosis was a shock to everyone. Joe was really devastated and coping was tough for him. He was having moments of blurred vision at work and short term memory loss...the memory loss was very noticeable, even to him! He began to experience hot flashes. He ignored them thinking that it was just the stress of how everything with my health had affected him. I urged him to see a doctor...he refused...he was really ticked off!
10/2007 I rushed him to the emergency room with chest pain...we thought it was a heart attack. He stayed overnight and the diagnosis was a panic attack. He mentioned that he would see a doctor at the first of the year.
11/2007 Unfortunately, all of the medical bills were piling up and the stress was too much for both of us. We put our health and marriage first; filed for Chapter 7 and moved closer to his work...140 wooded acres, the lake, peaceful and just what our nerves needed to relax and recoup.

03/2008 Finally got him to see a local endo! Joe didn't like the endo from the moment he met him...didn't like his attitude, but went along anyway. Had blood tests run and discovered that his testosterone levels were even lower than in 2000...as in 156!!! Began taking Testim. No change in 3 months so went to a compound cream. This was a much calmer time for us, but he began having nights with horrible leg cramps (charlie horses), acne, cold flashes (as in teetch chattering cold) and then hot flashes, where he would feel like he had 104 fever! I noticed, too, that he was still really tired and sleeping more than he wanted; still very moody...one moment Mr. Nice, the next, watch out Mr. Hyde!!! Very little change in the testosterone levels after 45 days on the compound cream and Joe still complaining of chronic fatigue. The endo told him "live with it, many men do." *dead serious!!!* Joe insisted, so the doc changed the compound cream to the newest thing out...the sublingual Baucle. His energy improved with time on the Baucle, and was more productive at work and at home; his memory improved somewhat and he's down to 185lbs. I hopped on this site and found a local endo that is very familiar with Cushing's. He was really booked (like 3 months out!) and, of course, Joe wanted to be seen like yesterday! So we opted to see his partner...big mistake! This endo, too, thinks that it's the diabetes. On Joe's last visit, he asked the doctor what could be done about the chronic fatigue, the loss of libido, the weight, and those humps!!! The endo's response was, "Well, what do you wanna do about it?". We showed the endo fotos of the progression in Joe's physical appearance and his response was "And?"...yes, this was a bad thing! Joe is at his wits end and I'm trying to keep him calm through all this, so he doesn't give up, too

03/2009 The beautiful house in the country sold and we had to move, once again. So here we are...FINALLY things are calmer and my health has improved drastically. He has changed endocrinologists twice since the beginning of the year. Both seemed to really concentrate on the diabetes and ignored the Cushing's suspicion after just the urine test that checks the cortisol levels. He has A LOT of the Cushing's symptoms, but can't seem to find a doctor willing to dig deeper than his diabetes. We are so frustrated! IS THAT STRESS OR WHAT?!!! *lol*

Last night, Joe experienced another episode of hot and cold flashes, however this one lasted the longest of any...3 hours!!! His teeth were chattering so hard from being cold that it woke him from a deep sleep. That lasted a good 2 hours and then comes the hot flash...an hour of hot red face. He was physically exhausted! All he wanted to do was sleep. He refused to let me take him to the ER, but agreed to see the doc first thing in the morning. Let's see then what the primary care physician suggests...I'm taking all the fotos, the list and anything else he might need. Will keep you updated.


THANK YOU for taking the time to read. God bless.

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