Cushing's Info

Here goes...

I am a 32 year old female living in Connecticut and working in NYC. I was a healthy, happy, vivacious person until after my 17th birthday. Then my medical trials began.

It all started with a bout of tonsillitis that landed me in the emergency room. I had tonsillitis when I was 9 years old but bounced back quickly with rest and antibiotics. The ENT at that time said that there was no need to have them removed ("We don't 'do' regular tonsil removal these days"). Fast forward to the end of my freshman year in college. In a period of about 6 hours, I developed all of the classic tonsillitis symptoms. I headed home from school and my mother took me to our PCP who immediately sent us across the street to the emergency room. The same ENT that treated me some 8 years before treated me in the ER. One 'minor' procedure later along with antibiotics and IV fluids and I was sent on my way to recover. No mention of removing the tonsils. I bounced back fairly quickly feeling back to myself about 10 days after the initial ER visit. But that was short lived. Exactly 3 weeks to the day I had walked into the ER, I was back and sicker than before. The same ENT arrived, examined me, tried the same 'minor' procedure to give me relief but to no avail. I stayed in the hospital several hours for administration of IV antibiotics and fluid as I had become severly dehydrated from not being able to swallow my own saliva because of the state of my tonsils/throat. Once hydrated, I was sent on my way with loads of medication to help get me to a state where I could have my tonsils removed. Several weeks later I had my tonsils removed. Standard surgical procedure with no complications. The surgeon did note that he had never seen tonsils as large and inflamed as mine and said that they looked as though they were on the verge of becoming more swollen.

I didn't think much of it the whole tonsils ordeal. I returned back to college and was back to my studies almost immediately. I was feeling better but noticed that I was having stomach/digestive issues. I attributed it to the loads of antibiotics that I had been on for months and a not-so-health diet of college dining hall food (I lived off of cereal and soda!). Again, I didn't think much of these issues until they started to interfere with rowing on the crew team, playing women's ice hockey and socializing with my friends. My mother and I proceed to the PCP who referred up to a gastroenterologist. The GI performed and upper and lower GI scope and found that things looked 'relatively normal' but that my lower GI track was inflamed. He prescribed a diet that would address the inflammation and sent me on my way. I followed the diet to the letter but progressively got worse. In an effort not to disrupt my college life, I pushed through as best I could. Painful bloating, gas, diarreha, constipation, fatigue were a constant during the last 3 years of college. Regardless of how I changed diet or what supplements I took, nothing helped. I continued to push through. By the time I graduated college, I had put on approximately 40 pounds that wouldn't budge.

After college graduation, I entered into the workforce. I was excited about moving to a new city, starting a new job and meeting new people. Very soon after I started working, my GI symptoms got substantially worse and I developed severe migraines on a weekly basis. So back to the GI I went. After a battery of tests and a colonoscopy, he declared that I had no problems. It was all in my head! Thoroughly annoyed, I found a female GI how came highly recommeded. She conducted loads of tests, sent me to a dietician, 'scoped me a handful of times and even got me included on medical trial studies. The symptoms seemed to ease up a bit, but still disrupted my life constantly. Throughout all of the testing and scoping, she suggested that I follow a strict gluten-free diet. I was desperate for relief so I tried. To my amazement, I seemed to get better. She sent me to a neruologist for my migraines. Another battery of tests revealed all things were normal and they sent me on my way with medication to deal with the migraine episodes. With the gluten-free diet, most of my GI symptoms were under control and my migraines decreased in frequency. Upon this result she declared that I was a Celiac and told me that I was to follow a gluten-free diet indefinitely.  I happily did this for the next several years.

Life and work went on. Having so much energy again, I picked up running. I ran several half-marathons and one full marathon. I started weight training on a regular basis. I was feeling good! I dropped about 30 pounds and finally looked as good as I felt.

In 2008, the wheels fell off my bus. My weight dropped without explanation. I was losing about 2-3 pounds a week without trying. I increased my caloric intake and curtailed some of the exercise. No luck. Friends and family thought that I had developed an eating disorder due to how sickly skinny I had become. I developed acne (I was 29 at this time and had never had acne in my life). My skin became very thin and extremely dry. I had incredible migraines. I was painfully cold all of the time yet at night I would awake drenched in sweat. My sleep patterns were a disaster. I was exhausted during the day, could fall asleep extremely easily but awoke a few hours after falling asleep with insomina. My GI symptoms returned with avengeance. My vision was blurry some days and not the next. The hair on my head had become thin as did my eyebrows and eyelashes. I was constantly shaking as if I was having dropping/spiking blood sugar episodes. Still I pushed through.

It wasn't until I went on a vacation in September of 2008, gaining 30 pounds in a week, that I knew something was very wrong with me. The vacation was an active one scuba diving on a daily basis and hiking when not under water. Yet I packed on the pounds. My now fiancee (boyfriend at the time) declared that I looked at least 6 months pregnant due to how distended my stomach had become (I left for vacation with a 6-pack and returned wearing elastic waistband pants). At first I thought I had eaten something containing gluten or was having some sort of allergic reaction. But even after returning home, my body continued to revolt. I had extreme piting adema on all of my extremeties, continued to gain an alarming amount of weight all in my middle and had a distended stomach that strechted my skin so taut that I was in constant pain. I ran fevers regularly and slept for 18 hours a day during the weekends. The last straw that forced me to the ER was waking up one morning next to my boyfriend who asked me if I had been crying because my face and eyes were completely swollen. Off to the ER we went. I was diagnosed with Hashimoto's hypothyroidism, protein wasting entropathy, low red blood cell count and suspected Menetrier's disease.  They referred me to the nearest endocrinologist and GI for further investigation and treatment.

By this time in my medical saga, I had gained 75 pounds over the course of 8 weeks. In one weekend alone, I gained 20 pounds. My whole body ached and I had persistent non-specific organ pain (pain starting in the back radiating to my sides). The doctors I visited didn't believe me. They told me that the thyroid medication would help me lose weight. They told me to cut my calories and exercise more. Three endocrinologist later, I found one that was finally able to get my thyroid under control (it took her two years), diagnosed me with abnormally low IGF-1, reactive hypoglycemia, borderline high cortisol levels and low progestrone levels among other things. The non-specific organ pain seemed to increase depending on the foods that I ate (food induced Cushings?). The latest GI found that my pancreatic enzymes were equivalent to that of a 40-year alcoholic, someone that has cystic fibrosis or pancreatic cancer (all of which I didn't have). I had every scan, sonogram, x-ray, 'oscopy, ultrasound, CT, MRI possible done on my abdomen and everything came back normal. The ridges in my nails were so severe it look as if I had shut my finger tips in the door of a car. Blood work and all other lab tests came back fairly normal. Every so often I'd have a 'slightly high' or 'slightly low' result but nothing that triggered the doctors to provide a formal diagnosis.

This went on for 2 years. In all of this, my endocrinologist never gave up her investigation. She approached the Cushings subject more than one. I've done two 24-hour urinary free cortisol tests, three dexa-stim tests and two salivary cortisol tests. Dexa-tests came back normal, salivary cortisol test came back on the high-normal side and the urniary free cortisol tests were mixed normal and high-normal. Exhibiting a dozen markers for Cushings put lacking things like stretch marks and the buffalo hump, she isn't sold on the idea that it's Cushings. She has suggested cyclical Cushings but explained diagnosis can take years and is very precarious. It's very difficult to catch let alone diagnose. The one thing that I think is missing in the equation is that she hasn't sent me for head CT's/MRI's/scans. Knowing that this is the last unchartered area, I'm still pushing her to do this.

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