With Cushing’s

My story is very similar to the others that you’ll see here, with one notable exception; I’m a man! I find it interesting that the vast majority of experiences here are from women. I understand that Cushing’s is more common in women, but not to this extent. I suppose men just aren’t as comfortable sharing their experiences. Another difference for me is that I never really felt sick prior to my diagnosis. I gained about 20 pounds, got the “moon face”, and spindly arms and legs, but didn’t suffer from depression or fatigue to the point where it was noticeable. I was living overseas for the past few years and wasn’t too impressed with the health care there. My thin skin and easy bruising was written off by the dermatologist as being caused by excessive exposure to the sun in my younger years. A psychiatrist said my memory loss was due to job-related stress. My easy cutting and bleeding were deemed to be “normal” for someone my age (47). When I broke a bone in my foot for no apparent reason, no-one thought much about it. However, the worst thing was my repeated injuries to my back, which were never x-rayed, and deemed to be muscular and referred for physiotherapy. While I wish I had been diagnosed sooner, I harbor no ill-will against these doctors, since Cushing’s is so rare (especially adrenal tumor-related in a man), that the average doctor would never see a case in their lifetime.

Upon returning to the US, my back was still bothering me, so I went to my GP who referred me to an ostoeopathic surgeon. He also discovered that my blood pressure was extremely high and referred me to a cardiologist. The bone guy x-rayed my back and found four fractured vertebrae, which was quite unusual for someone so young. This, linked with my foot fracture led him to order a CT-Scan and MRI of my back. Fortunately, he spotted something odd near my left kidney and sent me off to an endocrinologist with an interest in osteoporosis.

After spending only about five minutes with the endocrinologist, he told me “I know exactly what’s wrong”. He ordered a 24 hour urine test and confirmed his diagnosis, telling me I was a “classic” case of Cushing’s Syndrome. He then referred me to a surgeon to schedule the removal of a 3cm adrenal tumor and my left adrenal gland. At the surgeon’s office a group of med students was given all of my history and symptoms, but the only one who could come up with the correct diagnosis was the one who already knew I had a hormonal problem. I felt like I was in an episode of Gray’s Anatomy!

My laparoscopic surgery lasted about five hours and I was able to go home from the hospital after a four-day stay. I was feeling pretty good (considering I’d just had surgery). On day seven I developed severe chest pain and wound up back in the hospital for another four days with pleurisy and pneumonia. This is something you want to avoid if at all possible. I stayed home from work for four weeks, feeling too fatigued to do much of anything, and often had an upset stomach. This was the hardest time for me, because I couldn’t do the things I used to. Also, I’ve always loved to eat and enjoy good food, but during this period nothing sounded or tasted good, making eating a chore more than a pleasure. I lost almost 15 pounds in the first two weeks, but put back on about half of that.

After surgery I started out on 30 mg of Hydrocortisone and weaned back to 10 within the first year. I felt tired most of the time and had a hard time psyching myself up to do things, but was confident that this would go away in time. I had the stamina to walk and exercise with light weights on a daily basis. My doctor advised me to refrain from jogging, biking, or golf for at least six months, as I was still at a high risk for further bone fractures. This was the most frustrating thing for me, because in my pre-Cushing’s days I had always been very active, with outdoor hobbies and exercise. My appetite varied and my weight eventually stabilized, with my belly slimming a little and arms and legs filling back out.

After Treatment

It took me a full two years to become Hydrocortisone free, which was frustrating because I had hoped for a faster recovery. However, I’m now back to my college weight (25 lbs below peak weight), most of the aches and pains are gone, and after intensive treatment, my bone density has recovered. My energy has returned as much as can be expected for a 49 year old and I still enjoy being outdoors, but can’t jog or run due to the remaining back pain. Much to my wife’s dismay, I’ve taken up a new hobby — skydiving.

In hindsight, it should have been obvious that I had Cushing’s. I showed many of the classic symptoms, but they were explained away as part of getting older. I’m amazed now by how many people had told me they thought something was wrong with me but were afraid to ask for fear of being considered nosey. Many of them are old friends that only saw me once or twice a year, so the changes in my appearance didn’t seem so gradual as it did for me and my wife. Several people told me they didn’t recognize me at all.

It took a while to get a diagnosis, but I feel lucky to have been diagnosed after having Cushing’s for around four years (estimated by looking back at old photos). I suspect I wasn’t hit as hard as many because I was very active before and during my illness. My medical care in the US has been excellent and my employer, family, and friends have been very understanding and supportive through the whole thing. I’ve learned a lot from various Cushing’s websites and was connected with a wonderful email penpal who had the same procedure at about the same time. It was great being able to share progress and setbacks with someone who was in the same boat.

My wife and I enjoyed living overseas, but now realize that moving back to the US to get healthy must be part of God’s plan for us. We’re thankful for the many problem-free years we’ve had together and look forward to many more now that we’ve put the Cushing’s monster to rest.

I wish the best for all of you who are still fighting for a proper diagnosis and an end to your symptoms.

Member: 080806
Newsletter: Winter, 2010
Country: England

An Update

If you’re a regular on the CSRF website, you’ve probably seen my photo on the top of the homepage. The “after” photo is now nearly five years old and a lot has changed for me since then.

My Cushing’s story on the website tells of my experience with diagnosis, surgery, and several years of recovery. At that point I still had some lingering effects, but I’m now happy to say that Cushing’s has left me with no lasting effects. Since that time, my career has re-started, with one move in the US and two internationally. This has been a wonderful experience for my wife and me, as we’ve been able to explore places we never thought we would. All of my aches and pains (except the normal middle-age ones) are now gone, as is my dependence on any medications. My weight has been stable for the past few years at my old college weight and I’ve resumed running, having now completed five half-marathons, as well as a “sprint” triathlon.

Listing these things isn’t meant to sound like gloating, but rather a demonstration that after beating Cushing’s, anything is possible. My experience with Cushing’s has taught me to appreciate the fragility of our bodies, but also the strength we have to rebuild and renew. It also reinforced the importance of faith, family, and friends during the difficult times. Without them, there is no way I could have come through the experience so well.

The information and support I received through the CSRF website and its members were also an important part of my recovery and I can’t thank them enough for what they do in their ongoing mission. Please remember that everyone involved with CSRF has a common goal, which is to make life better for fellow Cushing’s sufferers. Don’t hesitate to reach out for advice, to share experiences, or just to be heard.

Newsletter: Winter, 2015

Country: Malaysia