lbeu12

I am Leslie. I live in Colorado. Here is my story.

I was skinny as a kid and teen. Started menstrating when I was 15 and it was irregular from the beginning. One month I'd have it super heavy, and then I wouldn't have it again for 6 months. Then I would have two normal periods in a row, and then nothing again for months. My doctors told me that it is "normal" to be irregular. I went to college and they continued to be weird. Doctors prescribed BCP to help "kick start" a normal cycle. I took it for two years and then got off to see if it was normal. Nope. Back on BCP. Towards the end of college and then right after I graduated and started my new job I started gaining lots of weight. In high school and early college I was 5'6" and about 140-150 lbs. Now I was 190lbs. I figured it was because I could now afford to go out to eat more and wasn't walking across campus and being quite as active. So I joined a gym and worked out 4-5 days/week doing cardio and weights. That wasn't helping and I was soon at 200 lbs. I got a trainer at the gym. Continued to work out. Started restricting calories and journaling every meal. Was down to 1200 cal/day at one point and working out a lot. Still gaining. Over the next couple of years I kept gaining weight (slower now that I was working out and eating well). Nothing helped. Got married. Got off BCP since we wanted a kid. Cycles never "kicked back in". Got concerned about fertility and my weight at 210 lbs.

Talked to GP - she saw my symptoms - hair growth on chin/neck/face, stretch marks, obese (especially around the middle), acne, hypoglycemia. She referred me to my Endo. My endo immediately said it was PCOS. Also found out I had thyroid issues (sleepy/fatigued, weird sleep schedule had developed). So I started taking metformin and synthroid. Kept exercising. Periods came back after a few months on metformin (at one point took Avandamet). Nine months of regular periods. Lost about 20 lbs. Got pregnant. Stayed on metformin for first 20 weeks. Then got off. No significant complications. Started to develop pre-eclampsia weekend before due. Induced day before due date. Had beautiful baby boy. Weight 230 lbs right before delivery. Lost 20 lbs in first few weeks after. Breastfed for 9 months and my Endo wouldn't let me take metformin while breastfeeding - so I started gaining lots of weight again, even while breastfeeding exclusively.

By the time I stopped breastfeeding to get back on metformin I was up to 240 lbs. Continued exercising and taking Met. Gained 5 more pounds and hit my all time high (so far) of 245 this past summer. I have been exercising 5-6 days per week, eating well (probably about 1800 cal/day - as my body needs about 2900 to sustain my heavy weight). Lost maybe 5 lbs over the past two or three months. Incredably difficult to lose any weight and I'm afraid to slip up on my diet or exercise for fear I might gain it all back in an instant...and maybe even gain more!

At my last appt with the endo to check how I was and check my thyroid levels etc, we started talking about how I am very fatigued and how the hardest part of my day is just getting myself out of bed in the morning no matter how much or little sleep I got the night before. During the rest of my day, I'm usually ok. And I have a hard time going to bed before midnight but force myself to get in bed by about 11pm usually so I can function the next day. I usually don't have to get up for work until 7 a.m. I also don't really ever have any dreams unless I sleep late on a Saturday or Sunday. I also mentioned that sometimes I have some random days that I am so exhausted it feels like a great effort to breathe or lift an arm or leg. I usually lounge on the couch and nap or lay there motionless for hours on those days. But in the evening, I am often a bit better and can get up and going again around 6pm or 7pm. No rhyme or reason for which days I feel like that, but otherwise I am just generally fatigued sometimes and I usually feel fine at night. My entire body hurts some days - especially my feet/ankles, back (usually lower) and neck. And it is the worst in the mornings right when I get up. I have to shuffle to the bathroom to shower and it takes about 20 minutes before I can walk and stand normally. So back to my conversation with my Endo. She asked if we'd ruled out Cushing's. I gave her a blank stare and a shrug because until then, I hadn't even heard of it. So when I came home from that appt I started doing research and found this site. I can't believe that almost every possible symptom is something I deal with (except I haven't been depressed that I know of - unless that is why I am sleepy some days). I called her the other day to request that we do some tests to indeed "rule out Cushing's". But I'm pretty sure and sorta afraid that it actually probably IS Cushing's. I don't want it to be, but on the other hand, I just want to figure out what is wrong with me and start some sort of path to getting better if I can.

My testing process so far: *Updated on 3-3-2010

Overnight low dose Dex test - September 2009 - suppressed to 1.2

Vit D levels rock bottom

Cholesterol high (good type is too low, bad type is ok, triglycerides way high)

Camp Cushie:

a few high midnight cortisol serums, a few random high cortisol serums and ACTH

normal salivaries (elevated but not "high")

normal 24hr UFCs

5mm x 6mm left side pituitary tumor

enlarged left adrenal gland, with 7mm nodularity

Since then:

All normal results - some "elevated" in the normal range.

Still testing - trying to journal my symptoms so I can "catch" my highs.

Doctors and I feel it is cyclical or periodic cushings....now I just have to get the biochemical evidence to get the official diagnosis.

Leslie