Hello Cushing’s world! My names is Chelsea. I’m 23, female and waiting for a possible Cushing’s diagnosis. I’m trying to see if anyone has a similar story to mine? I’ve had a hard time finding people in my age bracket with similar symptoms or test results.
Up until I was 21, I was 110 pounds soaking wet. I’m 5’3 and have always been extremely active. I was on the USTA junior tennis circuit for 15 years and then started coaching when I was in college. I also was always on a high protein, low card diet for the majority of my life.
I also went on birth control at age 13 and stayed on it until I was 20. The first 6 months off of birth control, I never had a period but I assumed it was normal after being on the pill for so long so I didn’t worry about it.
Then, about 3 and half years ago, roughly six months after I turned 20, I gained 45 pounds in a matter of 5 months. Completely unexplained when, at the time I was coaching a JV tennis team and in kickboxing class twice a week. Obviously I was utterly shocked and disappointed. I started trying to lose the weight. I cut down from 1500 calories a day to 1200 and amped up my cardio routine.
My period had come back, but I started noticing that it would always come about 8-10 days after I expected it to come. Again, I assumed my body was just getting back into the swing of things after going off the pill.
During all of this, it was time for my yearly physical with my GP. I went to the appointment, had weight and height taken, and was ready to discuss with him the weight problem I got in what seemed like overnight. After walking him through my diet and exercise routine and mentioning my period irregularity, he simply insinuated that I was probable a closet over eater and said “Just eat more celery”.
Still to this day I can not look at celery without my blood boiling. He also said that once I lose the weight, my periods will get normal. Ok. I’m 20 at the time and a little naïve in my thinking that, “he’s the doctor, he must be right”. So I pressed on in my quest to lose the weight. To no avail. Instead, every Wednesday when I stepped on the scale, it showed that I had gained a pound of two.
At this point I’m weighing in at 158. Not grossly overweight but also not a healthy BMI. I also started noticing that my once long, strong jaw line was turning into mush and seriously thought I needed a chin implant. Then I noticed that I was starting to oddly resemble a linebacker. The fat on my back between my shoulders came out of no where. I have worn a scarf almost every day since to hide it. I also noticed that, while the sleeves in my shirts were fitting fine, my pants were not buttoning and I could no longer wear my mid-drift bearing tops without looking at myself and crying.
The depression began to set in. I had been diagnosed with bipolar disorder at 18 due to boughts of depression followed by highly elevated mood, never quite reaching mania. Also, I was anxious 24/7. I never took antidepressants. Only a mild mood stabilizer and still do to this day. It is the only medication I’m on.
Back to age 20, the next thing I noticed was that I could no longer bear going to school, coaching tennis, and working part time. It was everything I could do to just get out of bed. My back ached, my knees ached, and I was not even recognizing myself in the mirror. As my mother puts it, I started looking like I was stung my a thousand bees rather than putting on weight.
It was about this time, age 21 that I had skin problems. So I went to the dermatologist who diagnosed me with mild eczema on my elbows and tops of my hands. But it hurt. I couldn’t and still can’t stand for my hands to come in contact with anything hotter than warm bath water.
It then came time for my annual gyno appointment. Again, I rehashed everything I had been feeling and noticing and again, I was told it was just “life stress” and to “learn to relax and work hard to lose the weight”. So again, I left feeling like it was all in my head. The next few months is when I started noticing that I was not functioning like I used to. The comment I often made to my mom was ” I just feel like I’m on autopilot all day. Everything seems so hazy.” She began thinking I may have a thyroid problem.
SO I made another appointment with my GP and brought her with me. He adamantly insisted it was in my head and would not order blood work. Again, I left feeling like this was all my fault. A few months later, I accepted a job after graduation and moved to Boston. This is when I first noticed the disgusting black mustache that had taken up residence above my upper lip. I began having to shave it every day and decided well this must have something to do with my period problem, that was still coming farther and farther apart every couple of cycles. Again, more weight gain.
Finally, I hired a personal trainer and nutritionist. I met with the trainer twice a week and the nutritionist once a week. I kept up with this regime for about 11 months. I lost a grand total of…… four pounds. I was defeated to say the least.
During those 10 months I noticed that my vision was so blurry. Every day all day, it was slightly fuzzy but there would be instances where it would get so bad, I could no longer read my phone. I had been diagnosed with refractive amblyopia when I was 5 ( a non-wandering lazy eye) but I had never had blurry vision before. I decided to find a GP in Boston and made an appointment.
I yet again, went through my whole list of symptoms that I had been gradually wracking up over the last two years and again, heard “you need to just try harder to get the weight off and then everything will go back to normal”. UGH. I thought by choosing a female doctor this time that I’d hear something at least a little more hopeful. But no.
A few months later, I took a job with a great company and relocated to Houston. It was this time last year and I had completely missed a period. 84 days with no period. I decided to get serious. I starting tracking my cycle and recording my weight. I met with another GP. Again, I heard, you need to lose the weight. I was done. I resolved that this must be how I was going to spend my life. Fat, achy, depressed, most probably infertile, and going through life in a haze. However, I kept tracking my periods just so I’d get an idea of when to expect them.
Then, in October of 2015, I accepted a dream promotion and relocated to Seattle. I had started having hot flashes in Houston but guessed that it had to just be that Texas heat. However, they continued in Seattle. I was still living life with the sense that maybe all people feel like me. Maybe all people have aches and pains and can’t muster up the energy to do tasks as simple and mundane as cleaning the coffee pot.
Then, I went home over Christmas where I experienced the three most awful hot flashes of my life. My whole body started tingling, I felt like I was being held up to a fire. I resolved then and there that when I got back to Seattle, I was making a gyno appointment and I was not going to leave that office until the doctor thoroughly listened to me and blood work was ordered. I had a “don’t take no for an answer attitude”.
Luckily, by God’s grace I presume, I didn’t need that attitude. My new gyno is now my hero. Immediately after I went through the last three years of my symptoms, he sent me for blood work. He was thinking PCOS or a thyroid problem. Maybe both. A week went by and I never heard from him. He had said he’d call in two days. Finally, after I called the office about 5 times, he called and said he was sorry to keep me in suspense but that he had never seen blood work like mine. He was expecting to see either my thyroid levels elevated or my testosterone/androgen elevate. Instead, those were all in normal range. What wasn’t in normal range was my moderately elevated Prolactin level and my “through the roof” DHEA level. He had consulted four other doctors who were all just as puzzled as he was and recommended he refer me to a medical endo.
In the meantime, I had made an appointment with a new GP. I went to that appointment two days after my gyno called with my test results. I didn’t mention that conversation with my new GP. I wanted to see what her opinion was when I presented her with my symptoms and test results. She too thought PCOS with symptoms but when she looked at my blood work said ” I have no idea but something is not right”. SCORE! I couldn’t have been happier.
After years of feeling crazy and lazy and defeated, I had validation that my body was working against me. She didn’t come out and say “I believe you have Cushing’s” but she did say “When you see the endo, please ask him about Cushing’s”. My guess is, she didn’t want to make that kind of diagnosis. I got my referral to endo and called to make the appointment, it’s for next week. And I found out my gyno had written “possible Cushing’s?” on my referral. So now I’m anxiously awaiting my endo consultation. His assistant called yesterday and asked why no one had order a pituitary MRI yet. I told her that these were the first two doctors out of 7 that I have seen in the past two years who ever even believed something was wrong. She decided we should do the consultation and go from there. Weird to say, but I really hope it is a cut and dry endocrine issue. Then I’d have a real answer. So now, I’m at 173 pounds, 5’3, (obese as I have been told by several non Seattle physicians), with stage 1 hypertension and a multitude of symptoms that I hope are all linked together.
If anyone has had a similar experience, please reach out. I know this is different for every patient but any kind of similarity will be welcomed while I anxiously await the endo appointment next week.
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Jan 24, 2016 @ 11:32:42
Hi Chelsea,
i just read your article, and at several times cried. I am 20 years old experiencing the exact same thing as you, even what you said about your doctors rings true with me, I am going to see an endo at Duke Feb 2nd for cushings test. I didn’t want to get too detailed on the comment, but would love love love to chat with you!!
Please send me an email if you’d like to chat about everything, I am so interested in discussing our similarities & helping each other out (:
Thanks so much
Caroline
cmgreer@email.sc.edu
Jan 24, 2016 @ 16:52:17
Chelsae,
first off, I’m really sorry you’re going through this–it sounds like you’re on the right track and will soon have answers.
I’m also in Seattle and was diagnosed and successfully treated for Cushings here.
Send me an email if you’d like to talk.
With lots of support,
Beth
bkoutsky@gmail.com
Jan 26, 2016 @ 18:39:46
Hello Chelsae,
I am 37 and was also diagnose with Cushing two years ago. Mine was my adrenal glands (both of them). since the diagnoses, i’ve have my surgery, also two years ago. the road to recovery was slow and hard, but compared to the struggles of crushing’s I will gladly endure it. if you ever need support and someone that understands what you are going through, you can reach out to me.
Cross
crissyvan@yahoo.com
Jan 30, 2016 @ 23:51:17
Hi Chelsea,
I was just diagnosed with Cushings diease. I’ve had 2 surgeries in the past 6 months and after my second I couldn’t understand why I was still so swollen. I’m 5’6 and very active and a healthy eater, but in the span of a few months I went from weighing 135 lbs to weighing almost 200 lbs. I couldn’t breathe and was extremely depressed. I won’t go out in public and the smallest tasks (picking up my children, going to the store, work, school, even walking around the house) seem enormous feats to me. The only way they caught the tumor was because I had pneumonia and they saw a portion of it on my CT scan. I diet and exercise, but I look and feel like I’m 9 months pregnant. My son keeps asking me when I’ll be better. I’m still waiting for my endocrinologist to decide if he wants to do surgery or not. I hope you or some of the other people that have dealt with this can give me some insight or advice. Right now I’m hanging on by a thread. It’s horrible to know what’s wrong with you but not able to do anything about it.
Thank you,
Leslie
Feb 04, 2016 @ 22:44:23
Where is your tumor? There are a lot of support groups on Facebook for people who have crushings, pituitary tumors, etc. some of them are really great and informative
Feb 04, 2016 @ 22:34:12
Sound similar to me! Same age, height, vision issues, mildly elevated prolactin, anxiety, depression, hot flashes, high Dhea, etc. 1. You are not alone! I live in TX and have been having these issues since coming off birth control 2 years ago! I just recently got diagnosed with a pituitary adenoma and they are looking into crushings (the tumor can cause this). Please ask your endo for an MRI referral to check. Sometimes the tumor is so small it doesn’t show on the MRI. Regardless, it can still be there and there are medications that will make it go away! Good luck and God Bless you! I know the struggle all too well.
Feb 04, 2016 @ 22:43:06
Aubreytucker@ymail.com is my email if you need to talk or want any more info.
Feb 23, 2016 @ 01:09:07
Hey Chelsea! I too am in my 20s and in the process of being diagnosed! I have multiple test, blood work, MRI, ultra sounds, cat scans.. Ect. I’m praying I am close to an answer but still in the waiting process. I would love to chat and tell you more of my story! Email me if u would like to talk.
Feb 28, 2016 @ 07:11:25
I had vertically the exact same symptoms having successful surgery in 2010 when I was 35 without any reoccurring symptoms. My body basically went back to normal losing 118 pounds in about 2 years. Everything from no more acne to gaining my menstrual cycle back. I went from a size 2x back down to a size 2. If you would like to see. I’d be more than happy to send them to you. Please keep me posted.
Feb 28, 2016 @ 07:21:53
I had successful surgery as well. I’d be more than happy to send you pictures is you’d like.
Nov 29, 2016 @ 21:52:47
Hi Chelsea!
Yes, I too cried when I read your story – I’m going through the same frustration and being told by my doctor just to exercise more and see a dietician. He clearly didn’t believe me when I said I eat healthily (and not much!) and exercise. At 5’4″ I gained more than 100 lbs and now weigh in at about 240 and feel miserable!
Sigh, it would be nice to know what’s wrong and have someone believe me!
I’m still waiting to see an endocrinologist (I didn’t take no for an answer and finally got my doctor to give me a referral!)
Did you get a diagnosis?? I hope you got a result and feel better.
Look forward to an update with good news!
Cheers, Helen 🙂
Email: helenjdolan@yahoo.ca
Jan 25, 2017 @ 23:34:07
Going through the same – gained 30 lbs in a month, just had a Ct scan where they said I have no adrenal tumors but my dhea-s is still in the 860 range. Scary stuff. What surgery or options do we have?
Jul 26, 2022 @ 21:38:43
Chelsea,
I know this is an old post, but I’m curious if you got any answers. I feel your frustration in so many ways.
Jan 10, 2023 @ 21:36:14
I know this is an old post, but I am 19 and going through so many of the things you describe. I would love to talk, as I feel I have all the symptoms that point to Cushing’s, but my lab work keeps coming back normal. I want to investigate cyclical Cushing’s. I was a college runner and have gained 40 pounds in less than a year despite being a college level distance runner. My doctor’s are confused and don’t know what to do.
My name is Niamh and my email is nmcdadec@gmail.com
I would love to talk to someone about all this if you’re able.
Jan 10, 2023 @ 21:39:38
Chelsea,
I know this is an old post, but I have had such a similar experience. I am 19 and have been struggling with so many symptoms of cortisol excess for the past 11 months. My tests all come bak\