Print this Page Cushing's Message Boards

Johnna's Story

My story is so long and I have so much I want to say, but right now I am completely overwhelmed at sitting down and starting from the begining. So let me just say that I stumbled across the "mystery diagnosis" show and with no knowledge before I watched it of what the topic was I saw for the first time the story of someone whose body opperated against the laws of nature as mine has.

I feel now that I was directed by my Father in Heaven to finally have a name for the struggle that has been mine some 13 years now. I'm still trying to get diagnosed and apparantly that is a long road too.

What makes me the most sad about the entire ordeal is not the loss of my 20's or the health issuses but the self- loathing I have felt all these years. Even as I would say to friends and dr's and family that I was dieting and exercising I would still flog myself for not trying hard enough. Just to know I am not the failure I thought I must be to never succeed or pull myself off the couch is a gift.

I am grateful to those who have posted their stories and by doing so have inspired me to keep searching for answers. One day soon I will share the rest of my story, but I had to write and thank you all.

Love, Johnna

Update, 3/14/2005

If it’s true, as my husband has told me, the definition of insanity is repeating the same action expecting different results. Then I am one diet away from being declared legally crazy.

My battle with food and weight began somewhere in the eighth grade. It started when I gave Sadie Caesar some of my paper route money ( around $10.00) to load me up with candy bars from the “little store”. I was in a fairly controlled environment at home and my plan was to have my own candy stash when I wanted something sweet. Sadie gave me around 20 candy bars. I hid them around my room and did a pretty good job of eating one or two every day after school for the first week. Then, compelled by what, I don’t remember, I came home one day and finished off the remaining candy bars in one sitting. I was sick. I felt really sick. Not sick enough to actually be sick. But in seventh grade I had read a book entitled “ Starving for Attention”. I remembered that the main character had made herself vomit. I tried it. I felt better.

Sadie, after one or two more trips to the store for me went out of business as my candy supplier. She said she was embarrassed buying that much chocolate all at once. Before long, I had developed full blown bulimia. I would eat massive quantities of bread. I would climb out my window at night and vomit into a garbage sack to avoid leaving a mess in the bathroom. I would do sit-ups throughout the night. This went on through my sophomore year of high school. My mother and I were at odds all the time. I wanted to sleep all the time. What started out as a bi-weekly cycle of binge and purge escalated to weekly. I would try to diet all week, get ravenously hungry, and binge on Fridays when my parents were having their date day. Finally, my brother caught on to what I was doing and blew the whistle with my parents. They sent me to the local chapter of AA/BA (Anorexic and Bulimics Anonymous ).

I knew immediately that I was different then everyone there. I didn’t have the kind of baggage they all seemed to.

To give my mom and I a break from each other, I spent a summer with my grandmother. The binge/purge cycle got better but didn’t stop and at the end of the summer my parents called to tell me they were sending me to an eating disorder unit. Again, I felt different then everyone there. I was 16 and had more sense than most of the people there. What really made me mad was the desire on the part of the “counselors” to convince me that I had been abused in some way. Nearly everyone there had been, or so they claimed. We spent much of our “group” time reliving the various abuse stories of different individuals. When I would refuse to swear or objected to the use of vulgar language they would get upset with me. They blamed my religion for making me think I had to be perfect. They felt I was repressing something. What they did do was latch onto my rocky relationship with my mother. She did/does have issues with body image and she was/is a perfectionist. They attacked her at our family group meetings and also had me “confront” her. The thing is, I had never had any trouble confronting her at home. Hence, the rocky relationship. I knew, in my heart that I wasn’t as messed up as they kept telling me I was. I knew I didn’t want to rot out my teeth, or my esophagus, or ruin my chances to have children. I knew from early on that I was stronger than my compulsion. When I left the hospital I weighed 116.

It wasn’t as easy as I thought to get rid of the binge/purge cycle. I had relapses every so often. Usually separated by months. I decided that the really destructive half of the cycle was the purging half. I concentrated on that. So when I would eventually have a desire to binge I wouldn’t let myself purge. By the end of high school I considered myself cured. The binging was few and far between. Throughout this time I had been very athletic. I was on the track team, My brother and I played tennis. I taught swimming at the local pool. I agonized over being skinny like most teenage girls. But I was.

I include this part of my history because I have for years thought I may have messed up my metabolism during this stage in my life. Now, as I look back , I can’t be sure what was driving what. I know I was tired all the time. That my body craved those “sugar highs”. I wonder now, if there wasn’t a pituitary issue underlying it all.

My first year of college was great. I lived in the dorms. My weight was pretty stable through the first semester. The second half of the year I battled a few pounds but could pretty well take them off when I wanted.

The second year of school was a different story. I moved off campus to live with friends. This time though, I needed a job. With no car, I needed a job that wouldn’t interfere with my class schedule and was on the bus route. That made it a lot tougher. I started the year with enough money to pay tuition, get books and pay one months rent but I needed to find a job within two weeks so that I could get a paycheck in time to pay my rent. I was stressed Somehow I pulled it off but had to take a janitorial job on campus from 4am - 8am to do it. Without a car to get me to campus, I was getting up at 3:00am so I could get ready and walk to campus by 4:00am. My first class started at 8:00. I was getting no sleep whatsoever. For a while it seemed like no big deal - all college-aged kids are sleep deprived right? The stress was building though. My classes were tougher, I was falling asleep during them. My roommates had issues and I met my future husband.

By the second semester I had found a new job but my grades were bad enough that I was put on academic probation. It was put-up or shut-up time. I worried round the clock. My mind would race all night. I would study for hours with absolutely no focus. I wasn’t retaining anything. Now I was cleaning the courthouse downtown. 7:00pm to 11:00pm. My saving grace was Michael would pick me up so I didn’t have to walk. I worried about money, I worried about school, I worried about if Mike was “the one”. I was riding a sinking ship. Finals came. One of the classes I was doing poorly in, I crammed for hours. I got to the testing center 10 minutes after they had closed the doors to new test takers. I didn’t know they closed at 7:00pm I missed the final completely . I knew I was in trouble academically. Now I worried about my parents finding out. Nobody knew I wasn’t cutting it. My last chance was summer school. If I could retake some of the credits I could bring up my GPA.

Now I had a much better job. On campus at the ASB. Time to study, I was sure Mike was the one. All that was left was to pull up my grades. I was confident I could do it. I had received the letter telling me I would not be re-admitted in the fall if I didn’t bring up my GPA. I tried. I really tried. The day before I headed home to visit I got my grades. It wasn’t enough. I knew I hadn’t made it. By the time the plane landed at home I had broken out in large fluid-filled pustule on my ankle. My parents took my from the plane to the dr. They misdiagnosed me with hand-foot-mouth disease and gave me a cortisol cream. By the middle of that night I was back in the emergency room with it bigger and worse than before. The doctors had never seen anything like it. You could take my pulse visibly from the way the blisters throbbed. They put me on a high dose of pennislyn. After the weekend I went back to school. Three days later I found out I’m allergic to pennislyn. I had a full body rash and still the immense pustules.

I started the appeals process of my suspension. I still hadn’t told my parents about my grades. I got letters from my professors and did my best to show that my grades had come up some over the summer due partly to a great on-campus job that allowed me more study time. I was denied. And that was that. This is the point in time when I believe something changed within me. Something about me physically was changed forever. In a way, giving up on college was good for me physically. The pustules went away. I got a full-time job at a clothing store that I enjoyed and concentrated on getting myself together. I got engaged. And while, unhappy with myself about not doing well in college, was happier then I had been for some time. Then I started gaining weight.

I weighed at that time around 125. I had put on a few pounds but thought I had actually held the line pretty well considering my stress levels. But as all brides-to-be I wanted to lose 10 pounds before my upcoming wedding day. Somehow, even with dieting I weighed 140 when the day of my wedding came. I really didn’t worry about it too much. I was still wearing most of my clothes (size 6) and I didn’t want to become obsessive about dieting given my eating disorder history. I didn’t want to fall into old behaviors. Six months after my wedding I was ready to worry. I weighed 168. It felt like every time I dieted I gained weight. I went to see a dr. I knew I had a family history of thyroid disease. They checked my levels and guess what ? They said my thyroid was low The dr. commented that it was really unusual for a 20 year old to have low thyroid. He gave me two weeks of medicine. Then checked me again and said I was normal. It seemed wrong to me that he didn’t keep me on something.

Interestingly, every time I would get stressed, I would get smaller breakouts of the fluid - filled pustules. On my arms, on my fingers and hands. One Dr. I went to took one look at me, left the room and came back with a mask and rubber gloves. I told him there was no way it was herpes. He tested. It wasn’t herpes. He told me it must just be a stress induced reaction. And that some peoples bodies just have different responses to stress. He checked my thyroid. It was normal. Two more months went by. I joined Jenny Craig. I bought all the food at a huge sacrifice given our newlywed-student budget. Two weeks later I was 175. In one year I had gained 50 pounds. I also found out I was pregnant. I ditched Jenny and reveled in not worrying about my weight.

I had a wonderful pregnancy. The only real problem was being tired. Tired beyond anything I had ever experienced. Fortunately for me, halfway through the pregnancy I quit working. I literally slept 16 hours a day. (Oh to have the luxury ) Throughout the pregnancy I ate normally. Right before delivery I weighed in at 188. Three days after giving birth to my beautiful 6lb 11oz son on May 27, 2004, I weighed 150 I couldn’t believe that I came out of the pregnancy nearly 25lbs lighter than I went into it. I chalked it up to eating healthy and not stressing myself out.

Five days after delivering while my newborn was being checked for jaundice, I left him with his uncle while I went down the hall to use the restroom. As I sat down, something very wrong happened. Blood started gushing from me. Panicked and alone I didn’t know what to do, I’d never seen that much blood I grabbed the garbage can from the stall, straddled it and went to the door to call for help. Hospital staff heard me and the next thing I knew I was on a stretcher heading to the O.R. They found my brother and baby and put me on something to help stop the bleeding. They said I had hemorrhaged and kept me for a few hours under observation. Then they referred me to an OB/GYN. since my Dr. Was out of town. I went in and endured what I can only describe as a barbaric D&C since I was still sporting the stitches of my episiotomy and was given NOTHING for the pain. Too young and inexperienced to know any better, I said nothing.

I stayed down and recovered for the next few days. I loved being a mom but my nights were terrible Even though my son was a content and happy baby I obsessed through the night. Every night. Sleep deprivation was my constant companion. At four months to the day, I began my periods again. I didn’t think much of this except that while I was menstruating my milk would become almost non-existent. I would stop producing urine too. I figured I just wasn’t drinking enough fluids. Then the weight started to come back. Only, it wasn’t anything I could track. One day I woke up and had gained 4 pounds. A couple weeks later, my pants didn’t fit me anymore. I started slim-fast. Nothing. I couldn’t figure out how, with a food budget of $30 per week I could possibly be putting on weight. Especially while nursing. Yeah, I’m a good cook, and yeah, I like sweets but come on, they don’t use the phrase “starving students” for nothing. I figured that my metabolism must have been really messed up.

I kept growing out of my clothes. I started untucking my shirts and wearing only stretch pants. Jeans were too tight around the waist. My legs were still strong and slender but my belly started to look pregnant again. In fact, on days when I was sure I wouldn’t see anyone I would wear my old maternity clothes just to be comfortable. By Christmas 1995, just 7 months after the birth of my son I was back up to 175. I was embarrassed about my stomach. I became the queen of bulky sweaters that hang over your belly. In every photograph I would hold a kid, a pillow, whatever I could find to hide my belly. I mostly avoided pictures whenever I could. With my untucked shirts and my stretch pants and lifeless dry hair which seemed to be getting darker and darker, I became the definition of the word “frumpy”. And I was too tired to care.

Finally my husband got his degree and accepted a job offer in the middle of Nebraska. Excited to be on to the next phase of our lives and convinced that $20,000 was plenty of money, I was sure things were looking up.

Rural does not begin to describe our new home. I’m not afraid of adventure and always up for a challenge but this was a different kind of life. Lonely, depressed and faced with the reality of $20,000, I wallowed for the next few months.

Finally in spring of 1996 I decided to do something about my weight. I was so depressed. I decided to “Get Movin’ With Oprah” I cooked for cowboys and saved up the $400.00 I needed to buy the best of the 3 treadmills in town. I had held the line on my weight for nearly 6 months now. I had quit nursing and thought maybe that had been part of the snag in my dieting efforts. I put miles on my treadmill. And I started seeing some results. I lost nearly 10 pounds in just a couple of weeks. Well, I guess I just needed willpower after all. Then the weight came back with reinforcements. I now tipped the scales at 180. Then I missed a period. Not a trace. I was producing small amounts of milk even though I hadn’t nursed in over a year. I took a home pregnancy test that turned up negative. Still no period. I went to the Dr. I told him of my weight gain, sleep problems, depression, missed period. I told him of my family history with thyroid disease. He said it sounded probable. Two weeks later I went back and he told me my TSH was normal but he could prescribe me some Prozac and/or fertility drugs if I wanted them. I went home confused about what exactly he thought my problem was?

I decided to tailor my own diet. Maybe my body was just unique. I cut out sugar (my weakness) and put in 30 minutes on the treadmill and a minimum of 52oz of water a day. I even bought a special pitcher, filled it in the morning and required myself to drink it by nightfall. I worked in the yard nearly daily. With 16 oak trees in our yard alone and only a push mower it was a big job . I helped my husband on the ranch. 60 miles from any kind of town, there was no way I was beefing up on take-out and still, I continued to gain weight. My energy was sporadic. I’d have unbelievably productive days where I was super woman followed by four days of can’t even get myself dressed. I sweated to the oldies with Richard Simmons. I borrowed Cindy Crawford tapes and of course kept getting on the treadmill. All of it fruitless. How could I be such a dismal failure at this? If I wasn’t trying I could accept the weight as my own fault. On the days that I was so tired I just laid around I would say to myself , “See, if you would just get off the couch you wouldn’t have this problem ” Dieting became my enemy. I did less damage to the numbers on the scale by eating whatever I wanted. I just never lost anything that way. It was a no-win situation.

Then, in September of 2006 I began to have some spotting. After a couple weeks I went to the Dr. And left with the happy news that I was expecting again. Our euphoria was shattered when Sunday, Sept 29, 1996 I came home from church and had what was the worst case of intestinal gas I’d ever had. By 5:00pm we called the dr. (the only Dr. in town) who told us if there wasn’t any blood then I just needed to take a warm bath and relax. By midnight I had tried 2 warm baths, 1 cold bath, Tylenol, ice packs, Tums, and was still in the most indescribable pain of my life. We called the Dr. again and my husband was told that I was having a panic attack and to give me some Benedryl to make me sleep. He said not to bring me in until 9:00 the next morning. I guess we wanted to believe him. We wanted to believe the pregnancy was alright. The Benedryl didn’t put me to sleep. My shoulders radiated pain through my entire body. I was weak and couldn’t pick myself up from the floor of the bathroom. So weak my husband couldn’t hear me calling to him in the very next room where he had fallen asleep. I had always believed I would be one of those people who drag themselves and their six unconscious family members out of the ravine with one lifeless limb at their side; build a shelter out of the wreckage and keep everyone alive until search and rescue can find you. But by 3:00am I had cashed in my chips and asked God to please, if this was it, please take me home. At 6:00 am I passed out and at 7:00am my husband woke me to make the 1 hour trip to the doctor.

I honestly know that I ,with my will alone did not walk into that office. I didn’t have the strength. I was subjected to a vaginal exam and then an ultrasound. Finding nothing wrong with me I was placed in a wheelchair while the dr. proceeded to send me home. Luckily at that time I passed out again and woke up in the emergency room where the attending nurse immediately recognized the signs of a tubal pregnancy. Since I had now been bleeding internally for nearly 19 hours I was rushed to emergency surgery. The only thing that apparently had saved my life was that the blood had had time to clot at the rupture site slowing the total blood loss. How is this relevant to my struggle with Cushings? This is the experience that woke me up to the fact that not all Dr.’s care and/or know more than I do when it comes to my body and my health. This is the point in time where I stopped being impressed with a medical degree and became a mouthy, belligerent, know-it-all patient. Can you blame me?

After surgery, Dr. Quack as I will affectionately call him, came to my bedside to tell me I had lost a tube. He patted me on the shoulder and actually said the words, “We’ll do better next time.” That’s the phrase I obsessed about for the next six weeks as I was recovering with a 10 scar across my abdomen. He made it sound like we had lost a baseball game. I sank into a deep depression. I was depressed about the loss of the baby. I worried about my future fertility. I was depressed about my weight. I blamed my husband for not knowing something was wrong and getting to the dr. earlier. I was lonely and still trying to take care of my 2 year old. By the time I was ready for my 6-week post surgery appointment I had worked myself into a blind fury at the incompetence of the dr. I called his office and requested that the exam be given by his wife who shared his practice.

At weigh-in I had hit 191 lbs for an all-time high. I was shaking I was so upset when I went to my apt. In through the door blasted this dr. who I was not prepared to make eye contact with. He said, “Well, you’re my patient and I’ll be the one to do your exam today.” I lost it. I had done a lot of reading and knew that I had presented with every classic symptom of an ectopic pregnancy and he had said I was having a panic attack. A good doctor would have said, “Let’s bring you in and have a look, just to make sure everything’s alright.” I started crying. I told him I wasn’t emotionally ready to be examined by him again. He left and his wife came into the room. She started out with , “ You aren’t handling this very well. Have you have thoughts of hurting yourself or others? “ To this I replied, “Just your husband.” Then I left and never went back.

Still depressed. My relationship with my husband was strained. My eating was out of control. My mind was back to it’s familiar pattern of racing all night. I was exhausted all of the time. When we went back to my in-laws for a visit, I was so edgy and rude to my husband that his parents pulled him aside and asked if our marriage was alright. I knew something was wrong with me too.

We started back to school so my husband could get his Master’s Degree. I needed to do something to help myself. I joined a health club and as I was being given the tour of the facilities the girl asked me when my baby was due. I looked 6 months pregnant. I made an appointment with a Psychiatrist . I told him my story and further explained that I felt my poor eating had a direct relationship to my fatigue. I explained that my weight seemed to come on in increments of 6-8 lbs. It wasn’t something I could watch and say, “Oh, I need to cut back a little.” It was more like, “Whoa How did that happen ?” I told him that even though I could take responsibility for some poor habits, that dieting seemed to be more the cause of the weight gain than the eating. He suggested we test my thyroid again. He put me on a combination of Zoloft and Trazadone to help with both the sleep and the depression. We checked my thyroid which again came back normal.

I continued to plug away at the gym with virtually no results. I thought I must have picked up some kind of Athletes Foot because my feet started to crack across the pads of my feet and my soles were splitting. No powders or creams or lotions did anything to change it. One day just out of the shower I looked down to find a solitary dark hair on my left breast. Okay, that’s weird. I shrugged it off as hormones. Constipation was ever present. No amount of fiber changed anything. Except every so often I’d have diarrhea. IBS maybe? My periods were getting heavier. I still suspected thyroid as no matter how hard I tried I’d only lose small amounts of weight before my body would rebel and shut down. I went to a new dr. desperate for help losing weight. He said it sounded like a thyroid problem. We ran the tests again. He took my blood pressure and said it was really high. I don’t remember the numbers. I’d never had high blood pressure in my life. In fact even at nine months pregnant it was 116/60. He came back with a prescription for phen-phen. I took it home. I prayed to know if this was the answer. I waited to hear about the thyroid results. When they came back “normal” I figured that all of my problems must stem from being overweight. I took the prescription and was on my way to the pharmacy when I had a strong prompting that this wasn’t what I wanted to do. I tore it up so I wouldn’t change my mind. and went home. A few months later the news that phen-phen was responsible for heart problems started to come out. I felt I had dodged a bullet.

I was hot all the time. Socks drove me crazy. I would over heat if I wore them. I wore sandals everywhere. I never took a coat anywhere, even in the dead of winter. I joked that I was already well insulated. I would apply deodorant once before getting dressed and again before going to bed. I never slept with the covers on. People would always tell me I looked hot - and not in the sexy, good-looking way. My cheeks were ruddy and I always looked flushed. I thought I must be getting rosesaca .

Summer came and we went back to Mike’s job. Now eight months since my tubal pregnancy we decided I had healed enough to start trying to get pregnant. I discontinued the antidepressants and over the next 3 months went down 11 pounds. A drop in the bucket but I was happy. I was even sleeping without taking the medication. Now I was 198. In August we found out I was pregnant again. The healing power of being able to conceive. I could put all the worry of infertility behind me. I was thrilled. We headed back to school for Mike’s last semester.

Again, this pregnancy was hallmarked with fatigue. No 16 hour naps this time. I had a 3 ½ year old to take care of. I also noticed my neck was covered in small skin tags. My dr. said this wasn’t unusual with the hormone fluctuations of a pregnancy. I would always comment to my husband that I thought my face looked thinner then it had in a long time. We finished up school and Mike was promoted to a new job and a new state. We got settled into our new home just 5 days before Christmas 2007. The stress of the move combined with regular holiday bustle seemed like a lot. Of course we were glad to be done with school and looked forward to our new paycheck.

The birth of my second child resulted in a girl! Born May 16, 1998, weighing 6lbs 14oz, I gave myself high marks for a job well done. Especially when I weighed in nearly 20 pounds lighter shortly after her birth. It seemed as though my system just optimized when I was pregnant. If only I could stay pregnant forever! Sorry, sick joke. Whatever it was I seemed to be just the opposite of normal in just about every bodily function.

Then, two weeks after my daughter’s birth I could feel the depression rearing it’s ugly head. I was scared. Alone with my thoughts was frightening. I did a lot of praying. My daughter was much more demanding and there were times when I would have to set her in her crib and regroup for a few minutes. I went to the dr. I told him I was beyond any kind of natural “tired”. Sleep didn’t seem to help and that I would wake up and could only think about how soon could I lie down. His response was, “If you think you’re tired, you should try being an OB doctor.” I knew my cries had fallen on deaf ears. I went home and devised a plan for dealing with depression. I knew my mother had suffered from baby blues and figured that must be what I was going through. I wasn’t sleeping, how could I be so tired and still not sleep?

Four months later, within two weeks I regained all the weight I had lost during my pregnancy. 198. I looked dramatically different. Isn’t it supposed to be the other way around? Puffy after childbirth, slimmer later? I was a walking oxymoron.

All I could think about was not crossing that 200 pound mark. I decided to make myself exercise. I demanded my husband take me out 2 miles from the house with only one way home. Walk. Two days and two encounters with rattlesnakes later I decided I didn’t want it bad enough. I went back to the treadmill. My heart rate was so low. I rarely broke the 100 mark. I was more like 60. My husband’s resting heart rate was higher than mine after a 40 minute workout. The depression faded but never seemed too far away. It would resurface at regular intervals. I felt it was mostly centered around my disgust with my weight. Still plagued by constipation, cracking feet, dry skin, low energy, I became resigned that this must be what my “normal” was. It was hard to believe that because every so often I would have a run of great days when anything was possible. Was I bi-polar?

November of 1998, I crossed the 200 mark. 202. This was a new high. And a new low. Whatever it took I was not going to accept this. I found an exercise buddy at church. I obviously couldn’t be responsible to myself. We started exercising 5 days a week for 30min. I said I was doing it for my health. I lied. I was doing it to look better and I’m shallow enough to admit it. Whatever. I was doing it. We kept going, by the New Year I was down almost 15 pounds! My buddy and I decided to join Weight Watchers! January 1999 and February 1999 I was still seeing small improvements. By mid-February I weighed 179 and I was thrilled! I quit nursing my daughter in March. I gained a few pounds, but that was to be expected. We were now exercising 40min/ 5 days a week. I could never turn it around. Week after week I would come out of weigh-in having lost nothing. I must have plataued. I kept going. Then, I went up .... five pounds. My friend suggested I must have relaxed on my point counting. After all, she was still losing. I questioned my resolve. Had those 2 Tbl. of carefully measured chocolate chips pushed me over the top? Two more weigh-in just like that convinced me I didn’t want to keep paying for the privilege of public humiliation. We kept up with our exercise though. Then I found out I was (surprise!) Pregnant!

Thrown a little, we were still excited and I felt like, given my missing tube, we had been blessed to have another little family member. I was back to the 202 mark at the start of the pregnancy. It was like my body had these metabolic set-points that it felt it had to maintain. Whatever the high point was, it was impossible to leave that number behind.

This pregnancy was rough. My lower back was a mess. Sleeping was impossible. When I did sleep I snored like a freight train. My nose was always stuffy. I would get nosebleeds regularly. Taking a shower could start a nosebleed. My hips couldn’t shift without intense back pain. My heels hurt. My feet were spreading. I blamed the weight. The tendons on the back of my ankles were tight all the time. I had all but given up on getting any sleep. It wasn’t unusual for me to see the clock at some point within every hour. Six o’clock was the magic number for finally drifting off. Problem was, that’s when my family started their day. I was so lethargic I went back to the doctor. If it wasn’t thyroid, what else could it be? No one seemed interested in finding any answers. To them it was a no-brainer , I was tired because I was fat and I was fat because I was tired. No one could see past that option. I hated myself for the constant failure on this issue. In my heart I knew there was something physical working against me. In my head, it didn’t make sense. Even my body temperature was backwards. When I got sick, I went sub-temp like 95.7'.

Near the end of my pregnancy I got the first high blood pressure reading I’d ever had while pregnant. Only a few weeks before delivery, the dr. wasn’t concerned. I had my second son on Jan 18, 2000. He was 6lbs 15 oz. And perfect. For the first time, delivery was easy, nursing was easy. No post partum depression. I didn’t lose weight this time, but I at least came out where I had started. 202lbs.

Four months later, I weighed 215lbs. Why couldn’t I stop this cycle? I was discouraged by the numbers. Maybe I just needed to accept that I was going to be fat forever. I gave up on dieting. I did however continue to try to “motivate” myself by wearing clothes that were one size too small. Maybe if I was uncomfortable, I would think twice about what I ate.

Over the next few months I quit thinking about weight and it drifted back down to 205. In June 2000 I tried Weight Watchers again. Yeah, “ watched” my weight go up 8 pounds in one week.. Aaaaugh! I started to keep track of how slow my system really was. My periods were heavier than ever. I would pass large blood clots the size of grapes. Sometimes I wondered if I was having a miscarriage. At one count I realized that I hadn’t had a BM in 12 days. Well, it only makes sense that if nothing is leaving my body it has to go somewhere. I was still cycling through waves of depression and fatigue. Still, I was never better than in a crisis mode – if company was coming — I could pull amazing woman out of my hat and have my home, my yard, my life looking June Cleaver clean. If I told people I laid around 7out of 10 days they’d have looked around and said it wasn’t true. No mere mortal could pull off what I did in the time I did. It was because of these bursts of tremendous productivity that I believed I must just be inherently lazy. Or crazy. Or both.

Another few months went by. I quit nursing my son and decided to revert to desperate measures. Atkins. By now I had tried “Body for Life”, “Get With the Program”, “Eat Yourself Into A Coma”. The only thing left was Atkins.

If I was going to do it, I was going to do it right. I carried the book with me everywhere. It was dog-eared. I counted every carb, every sugar, protein, fat. I had the ketosis strips. Things seemed to be working. In the first two weeks, I lost 14 pounds. I stayed on the induction phase because I didn’t want to mess with what was working. Two weeks later (while still turning the ketosis strips deep purple) I regained 10. I did the “fat fast” section and gained some more. Seven weeks of hard-core dieting (with exercise) and what did I get for my trouble? Five extra pounds. I had even had my husband look at the scale before going to bed and again in the morning. Up four pounds! How is that even physically possible?! From the “weight loss resistance” chapter I determined that I must have a metabolic problem. This time I was not going quietly! I decided to see an endocrinologist. I called the office and faked my way through to an apt. (May 2001)

This time I took my husband with me. I told him that if I went in there and chronicled my history for this man, I was most certainly going to cry and then they’d try to put me on another anti-depressant. I also wanted a witness to the fact that I had tried dieting and exercise to no avail.

The whole visit was a blur. It was condescending to say the least. He opened with the line, “ You know, one of the hardest things we doctors have to deal with are the issues of weight and fatigue.” It was all downhill from there. He said I had swelling consistent with insulin resistance. He didn’t think I had a thyroid problem and launched into a lecture of how whales and polar bears put on fat differently and how if I take in more calories than my body burns I’m going to gain weight. Well, why didn’t someone tell me!? If only I’d known the secret of losing weight was reducing my caloric intake and increasing my activity level! I wish now I had had the nerve to ask him which one was I, the polar bear or the whale? I left stunned. I hate to think how bad it would have been if I hadn’t had my husband with me. We did have the blood work done and guess what! Finally, they came back abnormal! My TSH numbers were borderline high but my thyroid antibodies were off the charts. Now he said I had a goiter and prescribed a low dose of levoxyl. Victory! Years of feeling symptomatic for hypothyroidism had finally been validated.

After one month on the medicine, the sun came out and I found the me that had been missing for so long. Two weeks of the old me. I can’t describe what hope it gave me. Ahhhh....let’s just revel in this bight and happy moment on my story from hell
Okay, back to the hell part.

Living in an old ranch house, well, sometimes you get critters. I got bats. Did I mention that I hate bats?! In one day, I had four close encounters with bats including one walking across my bare foot while I sat at my computer. I freaked!! I put my kids in the car, headed for my in-laws in Idaho and told my husband I’d be back when he solved the bat problem. While staying at my in-laws home I gained another 7 pounds in four days. That’s something like 6300 calories a day not counting the ones you would normally burn in a day. That’s some serious eating. Even for me. I knew then that the thyroid medicine wasn’t helping.

My husband had gotten rid of the bats. It didn’t matter. I had developed a strange phobia. I thought I heard chirping everywhere. Every dark little cranny looked like a place a bat could be hiding. I didn’t sleep at night for fear of encountering one. I called the endocrinologist. You can imagine how sympathetic he was to my babbling about bats and stress and the medicine not working anymore. He told me that thyroid levels just didn’t fluctuate that quickly and told me to stay on the dose he had prescribed and get tested again in a few months. A few weeks later I got the letter from his office telling me he had retired.

I decided I needed a quality doctor. So many duds out there. Okay, I know they aren’t duds. I know that my body, my symptoms have been complex. But not one doctor had suggested anything beyond the thyroid panel. I needed someone to care enough to push beyond the obvious. I knew my in-laws family doctor was also a friend of the family. I felt he had an invested interest. Maybe that would make the difference. From the very first visit I was treated differently. He wanted to help and he believed what I said about my symptoms. One of the first things he did was to admit he didn’t have all the answers but that he was interested in helping me find some. He started by switching (at my request) my thyroid medicine to Armour and giving me the leverage to adjust my doses based on symptoms rather than lab values. It was worth the two-hour drive and the 45 minute wait to know that my time inside of his office wasn’t wasted.

Again, the medicine seemed to help for a few weeks before the bottom would fall out. The glimpses of normalcy were enough to keep me going. By December of 2001, on 2 grains of Armour, my thyroid levels were still low. He checked my liver function which came back normal. I seemed to be leveling out with regards to the swings in my moods. My sleep cycle improved too. I kept trying to maintain an exercise routine although, with no weight loss, it was hard to stay motivated.

In March of 2002, I learned I was pregnant again. In early April, I started spotting. Scared that I might be facing another tubal pregnancy, this time I went straight to the hospital. Do not pass go, do not collect $200. I wasn’t taking any chances. The pregnancy was alright, but the ultrasound revealed that it was implanted in a less than optimal spot. On May 11th, 2002, I miscarried. I spent Mother’s Day waiting to pass the baby. It was tough.

June came and I turned 30. My 20's were officially over. If those were the good years I wasn’t looking forward to 40. I didn’t even recognize myself anymore. I had stretch marks all over. Luckily they were fairly light colored, except for the stretch marks on my inner thighs that were so thin they would break open and scab over. My armpit hair seemed coarser and my underarms and groin area were darker. Are these symptoms of anything? I don’t know. I started seeing a line of hair from my navel down. Sparse, but still there. I couldn’t find bras that fit. The under wires would break from being stretched out but I couldn’t fill a larger-sized cup. I started wearing leisure bras morning and night to prevent more stretch marks from appearing on my breasts. I noticed my neck seemed to jet out like I wasn’t standing straight. Even when I pulled my shoulders back I still had that hunched up look (buffalo hump —who came up with that term?!) Along my spine were small raised white bumps - I don’t know if that is relative either, but hey, why not include all the details. My nosebleeds were almost daily. But we lived in the dry Utah mountains so I didn’t think much of it. I couldn’t see that I was losing hair, but my vacuum was full of it. Our shower backed up into our basement and the plumbers retrieved wads of hair. It wasn’t falling out so much as it was breaking off. Basically, combined with all my other symptoms I was falling apart.

I kept checking my thyroid levels. They were never the same twice and would still fluctuate just opposite what they should. My Dr. was perplexed. Being the good doctor he was, it was hard to get in to see him. In Sept. 2002, I was pregnant again. I guess we didn’t have to worry about faulty plumbing. Ten days later I was bleeding and was diagnosed with a “blighted ovum” . It was three more weeks before my body decided to stop acting pregnant. Disappointed and depressed. I still could put it all into context with my tubal pregnancy and be grateful to still have my life, my family and the opportunity for more in the future.

I switched thyroid medicines again. This time I added Synthroid to the Armour I was already taking. Now I believe that the real cause of my problems has not been thyroid, put rather an underlying pituitary problem that has affected my thyroid. I believe my cycles of “up” and “down” were more about cortisol levels and not so much of the thyroid as I once believed although I’m sure my thyroid is affected.

November 2002 I was pregnant again. This time everything looked good. I was tired again. I would get up at 6, be fairly productive until noon-ish and then crash and do virtually nothing all afternoon. Around 10pm my mind would start to race and I would talk my husband to death. We joked that the sound of my voice is what lulled him to sleep. I would lie in bed, my body was tired but my mind was going a million miles an hour. I tried making lists. I would get up and clean. I folded laundry at 2:00am. I had to strike while the iron was hot. My energy was fleeting. When I did lay down, I had to sleep on the couch. It was the only thing that gave my hips enough cushion and my back enough support. My back hurt all the time. I knew it was all a bi-product of being overweight. My dr. regularly checked my thyroid. He commented that any normal person would be bouncing off the walls on the amount of medicine I was taking. Instead we kept racheting it up. We discussed the possibility of having it removed. It would all have to wait until baby came and I was done nursing.

My pregnancy was progressing nicely, I was losing weight again. My face got slimmer and the puffiness under my jaw seemed to go away. Everywhere I went people told me how good I looked. My skin looked better too. All my friends complained about maternity clothes. I personally was excited to wear something that actually fit and looked cute. I hated plus sizes. Why do clothing manufacturers think fat woman like “looney tune” characters on everything they own? I actually had to buy SMALLER maternity clothes in my eighth month than I had worn at the beginning of my pregnancy.

My third son arrived on July 1, 2003. Six pounds 2 oz., a little smaller than the others but every bit as cute. I felt as good as I’ve ever felt post-partum. I had started the pregnancy at 215. I only gained 10 pounds throughout, and a few weeks after delivery I weighed 200. I was really excited. Hopefully the thyroid medicine would make the difference and I wouldn’t balloon up again. I expressed my concern to my about repeating old patterns. My doctor assured me that we weren’t going to let that happen. By the middle of October I was desperately calling his office. The weight was coming back! He was out recovering from back surgery. Two weeks later I weighed 220. I was so discouraged. I really thought this time would be different. No one believed me. I didn’t believe me. There must be something inherently wrong with me as a person to not be able to get control of this! Where was is going to end? How fat would I, could I get? I was depressed. I was also ultra sensitive and reactive. I let little things really get to me. Everything seemed disproportionate. My anxieties seemed to be closing in on me. I was still hearing bats in the summer months even though the roof had been fixed and we hadn’t seen a bat in two years. Driving past a semi-truck would make me hold my breath. My friends teased me, but it sure didn’t feel funny. When I worried about anything it took on a life of it’s own. When I finally got in to see my doctor, he was stumped. He said the next step was to see a specialist. Someone who knew more about it than he did. He referred me to an endocrinologist. I was skeptical, but what were my options?

December 2003. I had a sinking feeling when we pulled up at the same office building as the “polar bear” and “whale” guy. It got worse as I went down the same hallway, past the same receptionist and into the same examination room. Hopefully, a different doctor was the ticket. My heart raced. I held my breath. In came the new doctor. My heart sank. He was holding the open file of the last endo. I was combative from the start. I was shaky as I gave him the rundown of how I had been feeling. Even to me it sounded like I had cracked open a book on thyroid disorder and memorized what to say. I could tell he barely heard me talking. He looked at the labs my doctor had sent. I hadn’t seen them yet. He told me that my labs indicated that my TSH levels were too high and that he thought we should back down from the medicine a little. I got very agitated. I told him that for nine years I had been symptomatic but had gone undiagnosed because of the almighty TSH numbers. I asked him how reliable could they really be, especially when I was still having problems. Wasn’t the fact that I fluctuated like I did an indication of something? I looked over his folder and pointed to the fact that my thyroid antibodies were much higher than they had been two years earlier, what did that mean? He shut the folder and pushed away from the table. He said that the antibody levels didn’t mean anything. I asked him why, if they didn’t mean anything did they bother to test them? He had no answer. At this point, he asked to examine my abdomen. Now I know, he was looking for the abdominal hair that I had shaved that morning. He must have ignored all the stretch marks because they were light pink instead of purple. He never said anything about Cushings. When I got down. He suggested that even though I was exercising that if I wasn’t exercising at a level that made me sweat that it probably wasn’t enough to make an impact on my weight. I told him that I was so tired that I considered it a huge victory to get up and make myself exercise at all. But I admitted I wasn’t pushing myself. He suggested the glycemic index as a good diet for me to try. Then he accused me of trying to use thyroid medicine as a diet pill. I exploded! I told him that I’d have to be pretty inept to use thyroid drugs as a diet pill and still continue to gain weight on them. I told him I wasn’t looking for a magic pill. I was willing to work at my weight. All I wanted was an honest result for an honest effort. He never ordered any tests and by the time I got out to the car I was crying.

What a waste of time, energy and money. One step forward, two steps back. I went back to my family doctor in February 2004. He laughed when he read the report from the endocrinologist. I told him it had been heated. The report said “patient and I differed in opinion” it also said I was “unwilling” to try diet and exercise. With no clue of what to do next, we opened up the discussion again about removing my thyroid gland. My grandmother had had hers partially removed and had also enjoyed relief from some of her problems. My doctor said he would talk to the surgeon and get some feedback.

A few weeks later, we were back in the hospital with my baby. He had RSV. I was sick with worry. We got him to the hospital in time, but he was hospitalized for three days, and hooked up to an oxygen tank for two weeks. Then he was quarantined for three months. I worried around the clock. I watched and listened for every raspy little breath. He was weak and not himself for a long time. My sleep was fragmented at best. I also noticed a swelling in my armpit. I thought it my be a blemish. I squeezed it and found it had breast milk in it. Where was Ripley’s Believe It Or Not when you needed them? Every day, this small gland would fill with milk. Go figure.

In March we got wind that the company Mike worked for was reorganizing. We started sorting through the options of what that would mean for us. I didn’t want to move. It seemed likely we would have to. I obsessed about it. Night and day, it was all I could think about. I bottomed out. Then one night, suddenly, while watching televison I lost control of my body temperature. All of the sudden I couldn’t get warm. I was so cold that I started shivering all over. Mike helped me put on 2 pairs of socks. Still freezing. Six blankets later Mike was saying, “Honey, what’s wrong with you?” The blankets were heavy, but I was still shivering. Twenty minutes later the blankets and socks disappeared and I was sweating profusely. I needed a towel to wipe myself off. I went back and forth between the two extremes for most of the night. Finally I leveled off enough to fall asleep. I must have had some kind of bug.

For the next two weeks I barely functioned. I crawled through my days. Distraught at what my life had become, I poured out my heart in prayer. Please Heavenly Father. Please, I’m ready to accept that thyroid might not be the answer I said. I’m turning this over. Please enlighten the doctor’s minds as to how to help me. 20 minutes later, my doctor called. He said the surgeon wasn’t comfortable with removing my thyroid. That he wanted to try a new medication. Cytomel. He also wanted me to try some Lexapro for the mind racing and insomnia. I told him I was willing to do whatever he said.. After all, I had just committed to God that I would trust in Him.

The Lexapro helped me sleep immediately. After 10 days I was feeling so much better, that old desire to diet came back. South Beach Diet. I was fanatical. Everything to the letter. I lost 12 pounds in 10 days. Yes! Then, you guessed it — May 11th, I wrote again in my journal how hard it was to stay motivated after a 5 pound jump in my weight. I stayed on the diet until my weight crossed over the point where I had started. What was the point of trying? The Lexapro had helped initially, but I felt like the effects were fading. That, and the sexual side effects weren’t anything I wanted to have to live with. I weaned myself off of it but kept it as an option should things get really bad again.

In June, my fears became a reality. We were asked to move to Texas. I really didn’t want to leave our family. I really didn’t want to leave our friends. I really, really didn’t want to leave my doctor. Starting over again on the whole doctor thing seemed like a death sentence. I was scared to move to the South.

I took the whole family to the dentist for one last checkup before we moved. My teeth felt like they shifted when I would bite down. One was particularly painful. Turned out it had cracked completely in half and the only thing holding it together was the filling inside. The enamel was coming off my teeth. Gum would stick to my teeth. When they tried to fill a cavity, it took three shots of Novocain and I could still feel the drill. I bought some tooth whitener but when I went to apply it I became concerned about how transparent the top half of my teeth looked.

A week later, the company made another offer. They were buying a ranch in Nebraska which might prove to be a bigger opportunity for Mike. They gave us our choice. We weighed all the pro’s and con’s. More money in Nebraska. Better working environment in Texas. Nothing tipped the scales. I was severely depressed, but too busy packing to have a melt down. I only had 5 weeks to get everything in order.

After much soul searching, prayer and discussion. We decided that we could be happy at either location. We told Mike’s bosses that we would go where we were needed the most. They said, “Good, you’re going to Nebraska.” A week later, it was Texas. A few days later it was Nebraska again. Come on. Just tell me which direction to point the truck!

Ten days before we were to leave, we were told our final destination would be Texas. June and July proved to be one big roller-coaster ride. I was stressed beyond belief.

Packing took more energy then it ever had. I couldn’t lift boxes I thought I should be able to. I remember that sliding the couch out to vacuum, it felt heavy for the first time. Moving the furniture has always been one of my hobbies. Mike had often joked about not wanting to come home from a trip when the lights were out because he wouldn’t know where things were. That’s how often I rearranged furniture. Not this time. Things I had moved several times by myself, now I needed help with. I also remember around this time going out to toss a baseball with my son. What should have been an easy throw for me, an ex softball player, I couldn’t get any distance or direction to the ball at all.

After the hype of moving calmed down. Loneliness and depression just enveloped me. I felt I should look past myself to pull myself out. My religious advisors counseled me to reach out to others. I told them I wanted to but that you can’t send someone who can’t swim to save a drowning man. I kept the Lexapro as an option in the back of my mind. I felt like, depression to some extent was a healthy part of life. Mourning the loss of my friends and former life was a normal response. I just needed a gauge to know when I had crossed over to needing help. I made a list of minimum requirements for myself. Things like “get dressed, wash and feed kids, cook one meal, wash one load.” I drew a line that if I crossed it, I would know I needed the medicine. I never did.

August and September were pretty dismal. I ate everything in sight. (Interestingly my weight didn’t move) By October I could feel my spirits lifting. My weight had stayed around 215 for nearly four months. I hadn’t yet tried to diet while taking the Cytomel. I decided to give the South Beach another try. Within one week I was up eight pounds. I quit before the numbers got any higher. Now I was really discouraged. I couldn’t fit into any of my clothes. I also kept having the sensation of milk letting down even though I hadn’t nursed in months.

November brought another high cycle. I felt reasonably good. The holiday’s have always given me a boost. I quit thinking about dieting. Then, one night, I was waiting for Mike to get done showering and flipped on the television. Scrolling through the menu I clicked on a show called “Mystery Diagnosis”. Never had seen it before and couldn’t tell you now when it comes on. I watched, mesmerized by the story of Sam and Jackie. That’s me. That’s me. I new our stories were different, but the feeling of being completely unexplainable was there. Cushings Disease. I told my husband that I thought I knew what I had. I went out and looked up Cushings on the internet. I pulled up a brief description. It sounded like me to me. Not every symptom was there, no facial hair, my stretch marks weren’t deep purple. My menstrual cycle was normal. I tucked the printout away through the holidays.

December 2004. I missed my period. At the same time I discovered a vaginal cyst. The gynecologist said it wasn’t uncommon for obese women to have them come and go. When my period did show up 10 days late it was heavier then usual. We had company for the New Year. They left on January 2, 2005.

January 4, 2005. I was sick. Another round of sweats and chills. This time accompanied by massive headaches. I never had to take Advil. Now I was taking it as often as I could. This time the chills and sweats lasted an entire week. I was sweating like crazy, even having to get up and change the sheets. I showered three times a day. I had a strange odor about me. My urine smelled odd. And I was going to the bathroom all the time. I was weak and could barely get out of bed. My husband had to take off a few days to watch the kids. I thought I had the flu. After a week, things started to get better. I was still sweating at night, but it was manageable. For two weeks I laid around gaining strength. By the third week in January I hit another round of insomnia. I was up all night for a week. Then I was dragging myself through the motions of the day. I decided it was time to see our local doctor. I had put it off for six months. I wasn’t looking forward to rehashing my medical history. Again.

I went to see our local Physicians Assistant. I gave him a brief rundown on my battle with weight, depression, insomnia. He took one look at my labs and asked if anyone had ever looked at my pituitary gland. I said no. He suggested we start over. That we run a complete panel and suggested some tests that would help rule out Cushings or Polycystic Ovarian Syndrome. I was grateful to still have options. Looking at the labs I had brought, he said it looked like I had gone about as far as I could go with the thyroid. He did however find it odd that no one had ever run a thyroid uptake test.

Completely rejuvenated at the prospect of getting answers I started reading about Cushings. From the minute I read the very first bio I knew this was it. I knew it, I just had to prove it.

So now I’m in the process of getting a diagnosis. I understand it’s a tricky thing in cyclic Cushings which is what I believe I have.

Worth mentioning I think is the fact that just two weeks ago as I washed my face before bed, I went to brush the hair out of my eyes. One little hair didn’t go anywhere. I followed it back to it’s root which turned out to be smack dab in the middle of my forehead! It was nearly 2 inches long! I had already taken out my contacts so I went in and had my husband examine my face for more hairs. He found one dark hair coming from my chin. I have also added two hairs to the one on my breast. When my husband saw how upset I was he said, “ It’s only a couple of hairs, no big deal.” I told him that would be like saying he was only lactating a little, no big deal. In one sense it was upsetting, but in another it reaffirmed for me that I was on the right track.

I’m learning a lot in the process of getting diagnosed. One of the main things I’ve noticed is that I look at people differently. I see weight as more a condition than a weakness. Even in my self which is a long way from where I started. Maybe that’s what I was supposed to learn.

That’s my story for now. I’ll update it as I go. I'll add pictures soon too. Right now, I’m waiting for the results of an MRI and I’m scared to death we won’t find anything. My best to all of you out there. I hope my story helps someone the way yours have helped me.

Love, Johnna

HOME | Contents | Search | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Interactive | Bios | Add Your Bio | Undiagnosed | • Johnna |