Hi I am a 34 year old female who has just been diagnosed with Cushing’s Syndrome. I am married with two children ages 10 and 4. My husband is an active duty Marine and I am a former Marine.
I’ve always been healthy up until now. I had pretty much a yawn worthy medical history and I wish I still did. I guess it started two years ago when I started having to use the bathroom frequently at night. I did go to the doctor and they just told me to quit drinking before bedtime. I chalked it up to having children and maybe just a weak bladder. I wasn’t thinking rare disease.
Then I noticed that I started to gain weight and my close weren’t fitting right at all. I chalked that up to sitting at my desk job all day and not getting enough exercise. I did go to the doctor to have my thyroid tested and it came back normal. So once again I am thinking it is me and I just need to exercise more.
My husband received orders to California and we moved here in July of 2012. By this time my emotions are all over the place, my weight keeps creeping up but I think it is just stress. Determined to get back in shape I start exercising everyday at 630 in the morning. Normally I am not a morning person by any means but since we moved here I find it hard to sleep. I worked out for three months following an exercise regiment but the weight stayed on. My periods started to be further in between and would only last a couple of days, I went to the doctor for that as well. I was told there is “irregular” periods and then there is “irregular” periods and mine were not that bad. I had them test my thyroid again, it was normal.
Once again determined to beat the weight I started walking vigourously and watching my calorie intake. I noticed that I would have tingling in my toes at times and that my calves seemed weak. I thought I pulled a groin muscle but I didn’t let it slow me down I just kept going. My face started to get rounder and puffier, my skin seemed so thin that I could see all of the vessels. I knew something was wrong but I couldn’t put my finger on it.
I started to do my research on the internet and that is when I discovered Cushing’s. But I thought it is so rare I can’t have this. I started going to a Chiropractor for neck pain and when they took my blood pressure they were so alarmed they took it a couple of times to double check.
In March I went back to the doctor and told them to test my cortisol levels. My husband was due to deploy in April so he planned a surprise vacation to Angel’s Camp in Northern California. By this time I can hardly walk because of my pulled groin muscle, but I was determined to have fun with my family.
The second day we were on vacation I could hardly walk so I went to prompt care and had x-rays done. The x-rays did not show anything so they sent me on my way with crutches. By the 4th day of vacay I stayed in bed resting because I really couldn’t walk. I got up to use the restroom and I had the crutches and fell backwards. I ended up fracturing my hip. I had surgery and told the doctors I was currently getting tested for Cushing’s and that my 24 hour urine test came back abnormal.
They had a really hard time keeping my blood pressure under control during my hospital stay. While I was on vacation the endocrinologist office had called me to schedule an appointment but first I had to have another 24 hour urine test and dexamethasone test done before the appointment which was scheduled for April 23. Well upon our arrival back home I was referred to Orthopedics because of my hip.
Ortho took x-rays and it was determined that after the surgery my hip was not aligned right and a second surgery ORIF was needed. It was conveniently scheduled for April 23 (the day I was supposed to see Endo). I had my second hip surgery done and while I was in the hospital they were so concerned with my heart rate and blood pressure they did a CAT Scan for pulmonary embolism.
Well thankfully I did not have a PE but they did discover a nodule on my left adrenal gland. I am having it removed on June 11th and from what I’ve read I am terrified of the aftermath.
Is there any good news out there? I really hope so, I just want to be healthy and enjoy life again!
May 19, 2013 @ 17:16:52
Jenny….I had a very similar story to yours, minus the broken hip issues. I was 37 and thought my weight gain was all related to moves and changes etc. Dont be scared by all the stories you read. In fact stop reading them – you will drive yourself crazy. Everyone is different and sadly the “not so bad” dont seem to be published as much. I was terrified by what I researched, but thankfully I had a very smooth recovery and was off the hydrocortisone within 9 months. Find a great laparoscopic surgeon and an Endo that you trust. Be as aggressive with your recovery as you think you can handle. I was lucky to find an Endo that was in agreement with my desire to push myself quickly, but not too quickly. I was very lucky, I realize, but I just wanted you to know that recovery is not always terrible.
It won’t happen overnight, but you will get back to normal. I am 2.5 yrs post adrenalectomy and I feel fantastic. I lost all the weight I had gained too.
Good luck… You will get through it!!
Jun 13, 2013 @ 00:03:40
Did you have just one adrenal gland out? Are you on any more meds? If so what are you taking and for how long?
May 19, 2013 @ 21:38:02
I know when everything is falling apart it seems that it is over whelming. But you have good news. Your tumor was found and you are now on the road to recovery. It is not a fast road and there may be some bumps, but you are heading in the right direction. My diagnoses took 15 years. During that time I gained 65 lbs and couldn’t lose it, had kidney stones, high blood pressure, diabetes, sleep apnea, etc… This is not to say, mine is worse than yours, just that we all share a story of frustration with what our body and cushings did to us. Find a great surgeon and endo and then start your journey to a much better life. I am 2 months out of pituitary surgery and some days are rough, but I know I am getting my life back. Good luck and let us know how you are doing.
Jody Williams
May 19, 2013 @ 22:21:35
I am about 75% recovered 8 months after surgery. Good news is I have lost about 15 lbs (5’10” now 157) so I look much more like myself. I can exercise and do most things. But, I tired easily and can’t drink alcohol beyond a drink once a week. The first 6 months were rough. I think that there is a bit of magic thinking. Surgery=cure. But before I am cured, I have to go through recovery. I just didn’t know how hard it would be. But now, I feel bright-eyed again. It is amazing to know that I will be happy and healthy for many years to come!!! Feel free to email me!
May 20, 2013 @ 11:39:31
Aw, my heart goes out to you. I was simply putting some crackers up on a shelf in a grocery store while working and felt something snap in my back, and the pain was pretty intense. After trying ice packs and stretching it to no avail, I went to my chiropractor. H e took an X-ray and said he didn’t see any reason not to adjust my spine. It hurt really bad to have the adjustment, and about a week later I went in to ER at the local hospital for X-rays. I was told I had a compression fracture. I went to a doctor the next day and my mom went in with me. She is a retired nurse and suspected Cushing’s disease right away because I already had some of the other symptoms. The doctor said he thought of that right away, but unfortunately the other doctors in the practice did not concur. As a result of that it took another 2 years of tests to find that I did have a pituitary tumor on my right side. I had developed severe osteoporosis, my hair was thinning, while I had heavy facial hair growth, my skin was thin and fragile too. I reacted to Ibuprofen so severely that my feet broke open from the swelling. I had 2 more vertebrae break down after the first one. In June of 2010 I had 2 back surgeries, but that didn’t stop the pain. I had developed type 2 diabetes, high blood pressure (I was taking the maximum dosage of two medications for that), I sat with ice packs on my back for pain, I couldn’t wear shoes for almost 4 years from the swelling. My face became more rounded. I finally had my head shaved just over 2 years ago due to not being able to care for it. I went through a divorce before the thickest and worse part of all this, and I had some signs as that was taking place. BUT, through this whole ordeal, God never left me. I had 2 surgeries to remove the tumor in October and November of 2010. It took 2 because I had too much bleeding in my sinuses the first time, so the doctor couldn’t see to continue. As soon as the tumor was taken out, my body started to balance again! I am now pain free (after 2 months of physical therapy). I have gone from wheelchair to cane to NO PAIN! I no longer need any blood pressure medication, and no longer take any medication for diabetes. My blood sugar is much more normal. I can now walk without pain, ride a bike, and have almost a NEW life. Don’t give up on hope! It took almost 5 years to go thorough all of this, but I am doing great. Don’t listen to the horror stories. Yes, every case is a little different. And you are special in a way you never wanted to be, but you have others including myself to encourage you. The best thing for me was to get a great endocrinologist, who knows her stuff! This too shall pass.
Sharon 🙂
Hang in there, it does get better.
May 23, 2013 @ 22:08:27
Let us know how your surgery goes. What hospital and doctor are you going to?
Jun 03, 2013 @ 15:23:04
Hey Jenny,
My name is Frank. I realized I had Cushing’s Disease in August 2011, when I was 30 years old. I totally understand your frustration. For almost a year, I gained so much weight and had all the symptoms you’re referring too: headaches, blurred vision, diabetes, edima in my feets/stomach/legs, barely walk, hair fell out, mood swings, loss of memory, poor mood, etc. After changing doctors several times, I was finally correctly diagnosed. In October 2011, I reached out to the National Institute of Health in Maryland. I proceeded to live the next 2 months there undergoing testing. My tumor was found in my right adrenal gland and I left the hospital right before Thanksgiving after surgery. I didn’t go back to work until mid-December because of constant fatigue. Now it’s 2013 and I feel great. I went from 208 pounds to 165 pounds. Be strong and don’t give up! You will be back to normal in less than a year. I was off all meds in 6 months and diabetes disappeared! Feel free to email me anytime: frank.ware@yahoo.com 🙂
Jun 06, 2013 @ 20:04:41
Hello Frank
Did they think you had a pituatary problem at first. How did they tell the diffence between adrenal gland or pituatary?
Jun 08, 2013 @ 08:52:38
Hey,
To determine the difference, the first test doctors run is a MRI of the Pituitary Gland (catscan of he head). If no tumors are present, doctors will run a series of tests in the adrenal gland to find the tumor. Although, you never want to operate in the head, it is easier to find the tumor. Sometimes doctors have a hard time finding the tumor in the adrenal gland.
Jun 09, 2013 @ 23:12:08
OK thanks
Lynda