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My attempt at my health history



Hi. I'm Shelly. I've been asking questions on this site for months now and have found a lot of help and support from everyone. I've been avoiding writing down my exhasting story down this entire time... but I finally feel at a dead end again and feel like my whole story might earn me some good advice. It's 3:00 in the morning and what the hell. It's basically the only time I have any energy anyway...


My journey begins around my senior year of High School. I was always the size 0 girl who ate a ton but could never gain a pound. I bounced off the walls and was known for my hyper and sporty personality. I didn't get the concept of a nap and wondered honestly why people did jumping jacks. Are they a joke? Point is, I felt good until midway through my senior year. I got really sick and had my tonsils out and lost a ton of weight cause I wouldn't eat until my throat was better. Then, I started experiencing depression. I had always been someone who LOVED exercising ( I did soccer, basket ball, track, and cross country!) but after my illness, I was so depressed I couldn't go to the gym sometimes... so sad my muscle was gone. That last fall of my senior year, during cross country my feet were hurting terribly during and after races and we attributed it to my shoes. After graduation, my mom sent me to the Doctor because my face was getting dramatically fatter. I was mortified that she'd do that... thinking I was just getting ugly and offended she'd called me out on it, but she was concerned so I went. My doctor said he thought I had an infection in my wisdom teeth and said my glands were swollen and would go down once I had them removed. Not so. It got worse as well as my acne. I finally decided to start birth control to attempt to fix my acne. It actually started to work, but my weight gain was sooo frighteningly staggering that I switched to a low dose hormone. My weight continued to gradually climb, but not as quickly as before (I had been dieting and hard core working out throughout the weight gain and nothing helped). Anyway, so suddenly I found myself fat and zitty and horribly depressed. My feet hurt so badly that I couldn't run anymore and I kept getting chronic sinus infections. This went on throughout two years of college and my feet kept getting worse until I couldn't bike either.


Having been someone with strict self discipline, I was mortified that I let myself go like that and constantly found myself fighting with all that I had to get back into shape. I'd work out and barely eat... sometimes I wouldn't eat at all. I worked on a cruise ship for 3 months and ate salads without dressing and worked out in the onboard gym for 2 and 3 hours a day ( I wanted to look hot in my bikini!) But I kept gaining weight. I would get numb hands (both at the same time) and my face looked swollen.... face fat that continued down half of my neck and seemed to attatch on my cheeks making my jawline completely disappear under soggy sponge like zit skin. I'm only slightly exaggerating. After getting off the ship I decided to fix my problems once and for all and spent my hard earned money on a Natrupath.


After lots of tests the conclusion was drawn that I was totally deficient in most vitamins and minerals. She had me write down everything I was eating to the last M and M. She decided that I was not being accurate in my records because if I really ate that way I wouldn't be so low in everything (I never eat fast food, coffee or pop. She thought I was lying...) So anyway, I bought her suppliments and kept coming back. She decided that I must not be taking my suppliments as regularly as I claim because they should be working for me and they clearly weren't. I humored my parents by seeing my first Endo at the same time as this woman. He tested me and said "the good news is there's nothing wrong with you. The bad news is... there's nothing wrong with you! Hahahahaha". I cried and left. He had no idea how badly I'd been feeling and how totally out of control my health had suddenly become.


One day during all of this my mom got word that her 80 something year old father had just been diagnosed with Celiac Disease (meaning he was allergic to Gluten, a binding agent found in wheat, rye, and barley) anyway, my mother had health problems too including chronic migraines and researched the heraditary disease and I fit the bill. I told my Natrapath that the mystery was solved. The reason her suppliments weren't working was because my digestive track wasn't absorbing them and that once I went on the gluten-free diet, supposedly within 5 months my system would be fixed and everything would balance out. I didn't mind a strict diet for the rest of my life if it meant finally getting better.


Six months later... my mother's Migraines that she had from the age of 16.... completely gone. She was cured. All along, it was a food allergy! Wow. Me? Nothing. I was feeling worse and worse. I had gotten a job as a hostess at a restaurant (age 21 by now) and my feet hurt so horribly that I could barely handle it. It would bring me to tears. I forgot to mention I'd been to a physical therepist, a peodiatrist in Idaho, and one in California. I had special orthodics made, and wore special sandels. I had electrotherepy and cortisone shots. Nothing worked. I was diagnosed with Plantar Faciitis and swollen nerves, and loose tendons and ligaments. They had no idea what started it all. They wanted to do a nerve conduction study, but by then, I had to prioritize what health problems to address. I needed a peodiatrist, dermatologist, endochronologist, and an ear nose and throat doctor. Everyone thought I was a total hypochondriac so for a while I only addressed one issue at a time so as not to seem crazy.


I moved to California and my feet began to hurt so bad that driving my car and pushing the gas pedal made me cry. I had to get an MRI on my wrist because one day I reached for the steering wheel and felt like I ripped something. I couldn't use it for over a month which made work difficult, not to mention the fact that I'm a musician and practicing guitar was out of the question. By this time, I was up to 175lb. It may not sound incredible, but for someone who was 125lbs of muscle in High School and for someone who developed the face of a 300lb woman, I felt fat! Then, my cousin told me about Candida. Basically if you don't know what it is, you should look it up. It's a yeast overgrowth that causes basically all of the same symptoms as Cushings. It can be caused by taking too many antibiotics. I've been on antibiotics since I was 6 weeks old for chronic ear infections and such, so I KNEW this was what I had. Better yet, the cure was to go on a strict diet the killed the yeast and once is was gone I would be cured and could slowly start eating normal again. The diet was no wheat, yeast, caffine, sugar, vinegar, fruit, things like white or brown rice, alcohol, peas or corn, anything sweet. I could have nuts, but only almond and hazelnuts and only if I bought them raw and roasted them myself and then ate them in moderation, no red meat.... etc. Point being, I basically ate celery sticks, carrot sticks and raw sunflower seeds for 3 months. I asked a natrupath that I worked with after three months on the diet when I should start seeing results. He said I definately should have seen major results by the end of the first month and that I was barking up the wrong tree :spudnikheadstand:. I never even cheated once on that damn diet.


Then, my period stopped. That was the second time it had happend. The first time was a year before when I started seeing the natrapath, but it started again after 3 months. I hadn't been regular though. Anyway, this is about the point where my family started believing that maybe I actually was sick. Go figure. That was about March of this year. I started seeing an Endo again (wasn't excited about that, but what else could I do???). He was cool and seemed open minded. My mom had watched mystery diagnosis and saw a cushings patient on there and called me convinced. She hadn't even supported me with my candida theory so I was shocked to hear her raddle off about how the woman on TV was just like me. She said "I don't know though... the woman on TV had fat between her shoulderblades though and that was a major symptom..." I said " Oh, well I have abnormal back fat but it's more like a hump at the base of my neck" and my mom said "YES! That's like this woman!" So that's when I got online and found this site! When I went to the doctor I mentioned Cushings and asked if he could test for it. He didn't examine me or anything but said, "well... I'm sure you don't have it. It's very rare." He didn't ask for a long list of symptoms or my story, he just asked for my two worst symptoms. I said "How do I choose?" I finally decided on my weight gain and my foot pain. He quickly wrote my foot pain off as unrelated but ordered a ton of tests which was pretty cool.


after many tests including a 24 hour urine test, we found my cortisol level and my androgens were high. He narrowed all of the potential hormonal issues down to PCOS and... you guessed it.... Cushings. He did another cortisol test where I had blood drawn late in the evening when it's supposed to be low, and my results were still high. He then did a suppression test and I supressed. He decided that it was PCOS and ordered an ultrasound. (He still never examined me or asked what my symptoms were which I thought was pretty weird.) I had a perfect Ultrasound... nothing at all wrong with my ovaries. My doctor was suprised and took back his diagnosis... testing me for excess growth hormone and other things. He found that I was high in insulin, but the growth hormones all checked out. He decided to take back his take-back and diagnose me with PCOS again and put me on Metformin. I kept informing him this whole time about the info I got on here and asked questions about cyclical cushings (non-existant according to him) and about others who supressed on the cortisol test but still ended up having cushings. He teased me for falling victim to the internet, but I feel as though I take his opinion just as seriously as what I read on here. I decide that they may not know a lot about the cause of PCOS and that I'd humor my doc by trying to treat PCOS just in case. After all... a pill is way easier than brain surgery! It was like my doc thought I WANTED Cushings. Anyway, a month after Metformin I tested again (OH.... I started weight watchers too with the hope that even though eating well and exercising never worked in the past, the metformin might change that...) and my cortisol had gone down but my androgens were still high and he had tested and found that my vitamin D level was too low. He thought my androgens would get better if I lose weight ( I was up to 185 but dropped about five pounds after starting Metformin and weight watchers for a month) I should have lost more weight though if everything had gone to plan. Still have horrible horrible foot pain--- my water areobics even hurt them! Anyway, I had convinced my doc to MRI my pituitary this last time around just in case, and he did. He said everything was fine, but he had also told me before getting it that he was hesitant to do a scan cause a lot of the time people will find something that isn't normal nessicery but isn't doing anything to cause harm, yet people freak out and make something of nothing. He also said we'd be looking for a tumor that was so big it would be effecting my vision and "clearly I'm not having that problem so there's really nothing to worry about." I felt bad correcting him so often that I let it slide, but that just means I'll be asking for a copy of my MRI for a second opinion.


I never mentioned some of my other major symptoms like total forgetfulness or complete confusion and spaciness. I have NO sex drive and I crave sweets like a drug addict. I drink a ton of water and always feel dehydrated due to my muscle cramps especially in my legs and feet, and randomly, my face! Haha weird. I have a fat face and a back hump, and most of my weight is in my stomach and upper arms. I have ugly acne that takes months to heal and my inner thighs look like an LA freeway with all of the stretch marks. I get what I call "Shrek feet" when my feet swell up like crazy and I've had old women ask my if I'm "With motherhood" and point at my convincingly pregnant looking stomach. I'm still in chubby denial and feel like I'm a skinny hyper person stuck inside this crazy body that I had nothing to do with and no control over. I was up to 185 and now I lost about 5 pounds after a month of a strict weight watchers diet paired with Metformin and swimming laps in the pool for exercise. Hey, at least I lost anything, but I should be losing 5lbs a WEEK doing all of that. Okay, not normally, but the Metformin is supposed to make it come off despite diet and excercise, and for all I know, I'll gain that 5lbs back in water weight when it's time for my period anyway. Again, I had only lost it for 3 or 4 months so its back now. Joy. I never lost the PMS though! I feel like all of my symptoms are just a perpetual state of PMS! Hahaha seriously.


Sooooo now I live in Las Vegas and I don't know what to do. I need another doctor for a second opinion or something, but I heard there aren't any good endos here. Plus, I feel stupid continuing to look into Cushings after that other doctor was so convinced it isn't what I have. Should I be looking into something else? I don't even know if I'm on the right site anymore, but everyones stories are soooo similar to mine and I don't want to be in Cushings denial and pretend to believe in my PCOS diagnosis as I continue to get worse. I don't feel any worse lately (besides my feet) But I'm sure as I can be not feeling any better. Wow. It's 4 in the morning now. Sleep is probably a good thing for my health. What the hell. I lay awake in bed til 4 before I fall asleep anyway, may as well get some writing done! Hey.... Congrats to anyonw who made it all the way through my story. Thanks for listening. Wish me luck in figuring everything out and as always, any advice is appreciated.




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HI, Shelly. I just wanted to say your story is very well written and moving. I myself can offer no advise because I am in the same boat, but have not gone so far down the road yet with testing for Cushing's. I have been sick for a long time and dealt with a lot of doctors. Have you seen an immunologist for your infections? As far as for the other things, hopefully you will find an angel who will help you too.



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Hi Shelly, I am at about 185 pounds to and it sucks. I really enjoyed your post and love that you still have a sense of humor. I am just at the beginning of the journey, praying the doctor I saw for the first time today is not a quake. who knows I have a lot of the symtpoms and high cortisol levels, but he says he would be surprised if it was cushings. Best of luck






HI, Shelly. I just wanted to say your story is very well written and moving. I myself can offer no advise because I am in the same boat, but have not gone so far down the road yet with testing for Cushing's. I have been sick for a long time and dealt with a lot of doctors. Have you seen an immunologist for your infections? As far as for the other things, hopefully you will find an angel who will help you too.



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