- CASE FILE
In the 10 years I’ve experienced rapid weight gain (despite being active and eating balanced),insomnia, crippling fatigue and much more.....
ABOUT THIS CASE FILE
I don’t even know really where to begin in telling my story as this entire ordeal has been such a rollercoaster of emotions of up and downs.
I guess I can begin at 15 years old. As a teenager going through puberty I had hormonal problems from 15 years old. I had most of the normal changes like beginning to develop breasts, and growing hair on my woman parts. The only thing that was missing was I would never naturally start a period on my own. In fact to this day I’ve only had maybe 5 periods naturally without inducing and I’m 36 years old.
By the age of 16 when I still hadn’t started my period my concerned mother took me to my first gynecologist appointment, we were told that day that I had a condition called pcos. I was given birth control and my periods came every month like clock work. Two years later when I married my first husband at 18 we decided we would try for a baby so I stopped taking my bc...and my periods came to a halt soon after stopping.
We tried for 2 years to conceive to no avail. My gynecologist at that time asked if we would like a little help and explained to us that she could give me a medication called clomid that would induce ovulation and hopefully we would be able to conceive with that. She carefully went over all the directions on how to correctly take the medication; to how to time our intercourse for when I was ovulating. To make this story shorter...we did several rounds of clomid among a few other fertility aids and we never conceived.
Fast forward to the age of 23. That marriage fell apart, we divorced and all the while my health problems still existed. I was still not having periods. Doctor after doctor would tell me I have pcos and birth control or Provera to induce a period was all I was offered...in addition to metformin. I took these medications for years, but I always knew deep down something else was wrong. I researched pcos extensively...I have a few friends that also have pcos. The symptoms I read didn’t quite line up to all things that was happening to me, there was so much more. It seemed like no one else with pcos was as a severe of a case as I was!! Most people I knew could have babies with clomid inducing their ovulation. I could not. So I went back on my birth control and stayed on it until I was 25.
At this point I’d like to say that I have never been super thin in my life. In my late teens throughout my early 20’s I was around 145-150lbs and was wearing a size 8-10 in pants.
At 25 years old I met my now husband. Like I mentioned above I was 150lbs and a pant size 10. I thank the Lord above for this man I found, we fell in love and now were growing old together. About a year into our relationship we both knew we wanted to try for a baby so we did. I again asked my gynecologist for some help and went through all the fertility treatments again. This time I did some shots in addition to the clomid, and to not drag out the heartache of not ever being able to conceive I’ll just say the treatments didn’t work for us either.
Accepting what I feel is a loss we have moved on with our lives knowing it’s just not going to happen. I decided at this point I don’t want to continue to take birth control for the rest of my life. I just want to have a period naturally like other women so I asked my doctor if there was an alternative medication that could help get me on track again...something that I won’t have to continue taking for years. She gave me metformin once again and said it would help me have my periods back. It never did.
I stopped all medications altogether and just went a few years without having many periods at all. Although, I would induce a period every few months with Provera because it helped me to feel better. About 4 years after stopping the birth control. I was around 30 years old I noticed I was feeling very depressed...very down on myself, just a lot of doom and gloom. But I didn’t know why. I was happy in my marriage, I was very much in love with my husband. We became pet parents and I was happy in my life with that, we both had good paying jobs that gave us financial stability like I’ve never had before. We had a great savings (still do) and we were slowly building up our retirement. I had it all (to me). All the things I prayed for before meeting my husband...I now had. Why in the world would I be so depressed??
I made an appointment with a therapist...I asked my pcp for some medication for depression all of which I never found relief from this debilitating depression. We switched medications 5-6 times. Everything remained the same if not got even worse. I stopped taking those medications too. I stopped seeing my therapist...she couldn’t figure out my depression either. I asked for more hours at work to just keep my mind busy so I didn’t have to think about my depression and I just struggled through it the best that I could.
Fast forward a few years later...here I was 35 years old and nearly 100lbs heavier. I attributed my weight gain to my depression. I never changed my diet much over the years and if I did I changed it for the better...Joe and I joined a gym and we worked out a lot. We walked everyday, we rode our bicycles for exercise, we were eating healthier than we ever have in the 10 years of being together and all the while I was getting sicker. I was more tired, more emotional, more angry at times. I had severe insomnia. I had a hump growing on the back of my neck. My legs and arms looked like rails but my stomach kept growing and growing. I was losing hair on my head...I had acne worse than a teenager. I had male pattern hair growth on my body. There’s no way this was all due to pcos!! No way! But what did I know? I believed my doctors. Why shouldn’t I?
So, in July of 2017 I visited a dermatologist because I was just so sick of this acne!! While there she did a skin test (where they just look over all your body for any moles or other skin abnormalities). She started feeling around my neck and said “Have you ever been tested for Cushing’s syndrome”? I said “No, I don’t even know what that is”. She then said that maybe I should bring this up to my gynecologist or even make an appointment with an Endocrinologist.
As soon as I got home I rushed to the computer and googled ‘Cushing’s’. I found quite a few articles. I went through the symptoms and in my head I checked off almost every one! Later I read them out loud to my husband and he would say “Yep” after almost every one I mentioned. This is what was making me sick! I knew there was more than just pcos!!
August 2017 I met with a local Endocrinologist who suggested I take the glucose monitor he offered and test my sugar every morning for a week and record the numbers, because he said I could be diabetic. He also did a Dexamethasone suppression test, (1) 24hr ufc, and 1 saliva all of which were normal. My fasting blood sugar for that whole week was in the mid 70’s-high 80’s which indicated no diabetes. He didn’t test me anymore and said that I didn’t have Cushing’s.
I somehow came across a Cushing’s support group (I honestly don’t remember how now)..and sent a request to join. Everyday I read similar stories as mine, I felt so at home here...finally other people who could understand how I was feeling!! Who knew that all these changes were not in my head!! I was now aware that there can be normal test results even with Cushing’s, and it seemed like everyone was fighting to be diagnosed...just like me!! I learned about cyclical/episodic Cushing’s and that if that is what mine was I would have to “catch a high” in order to be diagnosed.
I kept hearing about this Dr. F from a lot of people in the group. I decided to look him up and see what he was all about. I’ve heard such great things about him, and after hearing all the horror stories about other doctors dismissing people I wondered if I should just skip all the heartache and dismissive doctors and go straight to him? I had at this point gotten to my breaking point with this illness. He was in Los Angeles and that was over 2,000 miles away from me. People would surely think I’m nuts to fly across country to see a doctor!! And they did! They still do...lol.
I did try a few more Endocrinologist close to me before going to LA, and without too much detail they just didn’t work out. I made an appointment in September for December to fly out to LA to see Dr. F...I reserved our room for a week and plane tickets. Here I am less than a year later recently diagnosed with cyclical Cushing’s and very well could be having surgery in the next few months. I’m working with a really good local Endo in addition to Dr. F and they both agree that with the highs I have now and the clinical presentation I do indeed have Cushing’s. We do need some additional testing just to be double sure!! But, that’s okay...we are currently checking on my adrenal tumor as well. I didn’t come this far to just come this far! Fingers crossed!
I am still a medical mystery even after all this.