This is my journey with Cushing’s Syndrome. I am 57 years old. How long have I had it? I don’t know. All I know is that when I was finally diagnosed in the spring of 2010, the doctor said that I have had it a long time.
This started with many visits to my primary doctor probably at least for the last 15 years. I had high blood pressure, extreme sweating, depression, anxiety, fatigue, and my weight kept going up. I had problems with concentration and memory and I was told that we all have problems with that. Something told me that my issue was much more. I had high cholesterol, high triglycerides, migraines, joint and muscle pain so bad that I just didn’t know what to do anymore. I’ve been to a Rheumatologist and have been diagnosed with fibromyalgia and osteoarthritis. I’ve seen a Cardiologist – I have a heart murmur. I’ve been told I’ve had this by several doctors and that a lot of people have them and they are not all serious. I’ve seen a Neurologist for the migraines and have had a head MRA which showed scattered lesions. I’ve seen an Orthopedic Surgeon and have had multiple surgeries and will no doubt face more because of the degenerative condition I have. I see my Chiropractor on a regular basis for over 20 years. I’ve had foot reflexology. I’ve had acupuncture, which helps. I was told that I was going through menopause and that I was just having hot flashes even though I had a total hysterectomy in 1994! I’m not sold on that one!
I had been on an anti-depressant since my Mom died in 1993 which was prescribed by a primary Dr. and I wondered if that was working (Makes me wonder if the Cushing’s was a problem then.) Because we had a change in insurance I could no longer go to my primary Dr. for mental health issues. I started seeing a psychiatrist in January of 2007 to see if that was the case and to see if I could get help with my mood changes. So, it was trial and error to see what was going to work for me. I had tried and been on so many medications by the time I was diagnosed with Cushing’s that from what I have been told by my family and friends that they could see me getting worse and not better. My question to this Dr. was: What if all this medicine is not needed and all the symptoms I am having may be a result of the Cushing Syndrome? He said:” That’s a good question”. I said that I wanted to try and was going to slowly wean myself off all those mood stabilizing medications and see what happens after the surgery.
Needless to say I’ve had countless tests done. Once again, I went back to my primary Dr. She then suggested that I see an endocrinologist, who I did see in January of 2007. He ordered the first 24 hr urine collection. He said everything was normal except that my sodium level was ‘ a little ‘ elevated, that it was nothing to be concerned about. I said that I just didn’t feel good. He said ok, we’ll do the test again. Well, that came back with the same results. Everything was ok. So, once again I was left thinking that there was nothing more he could do. So, I went back to my primary doctor in March of 2007 and she ordered a CT scan of my stomach. Due to a system change within my provider’s clinic I had access to my medical history/lab results. The report stated that there was a history of adrenal nodules! It seems back in 1988 I had a CT scan and they were present then and I was not even made aware of the fact! When I questioned my doctor she said that according to the report they were stable bilateral adrenal nodules, compatible with adenomas, 2.5cm on the left and a 1.3cm on the right. She said that this was nothing to worry about, that many people have these and are not bothered by them at all and may only find out they have them due to testing for other reasons, which is true.
So, ok time goes on. My complaints continue. I’m starting to look like I’m nine months pregnant! I got to the point that I didn’t even know if I should go back to the doctor, thinking that there was nothing more that could be done. Would I just have to learn to endure whatever was going on? Fast forward to September of 2009, my health is getting worse. I went back to my primary doctor and I expressed concerns about the ‘ nodules’. I had started doing some research on my own and found that there was a lot more that could be going on than what she was aware of, so a repeat CT scan was done. I asked to be referred to another endocrinologist, Dr. Gayle Kassdorf, whom I did start to see in December of 2009. We went over the results of the recent CT scan and it was me that who brought it to her attention that there was now another 1.3cm ‘ nodule ‘ in the left adrenal gland.
(She then proceeded to do a round of tests, some that had not been done or even suggested by the previous endocrinologist. In her evaluation, she was suspicious that there was a problem that at times could be difficult to diagnose. She felt that I would benefit from further evaluation for the suspicion of Cushing’s Syndrome by Dr. James Findling.
I started seeing him in February of 2010. He then did his testing and evaluation. Finally, I had an answer for what was going on! Yes, I did have Cushing’s Syndrome and that I had very high levels of cortisol due to the what I now call tumors in my adrenal glands, most likely from the left one. So, on May 4, 2010 I had my left adrenal gland removed laparoscopically. After the surgery we found out that my right adrenal gland wasn’t even working ! So, we had to see if we could ‘wake’ it up. That worked, but I needed to take a steroid for a while until the cortisol levels came up to the normal range then I was slowly tapered off of it. Then, when my adrenal gland decided it had a job to do, it decided to work a little too much!
I wish I could say that my recovery was smooth sailing but it wasn’t. I realize that everyone recovers differently but, I feel if I would have had a lot more information as to what to expect, I would have been better prepared as to what I might go through. Maybe, maybe not. I prayed the first 6 months that the next 6 months or more would not be more of the same because for me that was a very bad time. I was told that “We don’t know how long you have had this but it has been a long time and it will take a long time for things to get as good as they will get” for me, which at that time they said it could be 1-1/2 years or more. Some things would get better and some may not. It was suggested that I go back to the psychiatrist as I was having problems with deep depression, which is not uncommon after surgery. That was about in February 2011. We still have not found something that works but does not have lasting side effects. The most recent one was a mood stabilizer that has helped but it may be responsible for some the elevated liver enzymes I have. So, I am off that for a while until a repeat lab test is done to see if the medication is the problem. This will be the fourth test. The Dr. said the Cushing’s could be responsible for some liver problems. The extra weight could cause fat to develop in the liver and could be the cause of what is going on. Time will tell. I still have a fair amount of joint pain and muscle weakness. I don’t sleep well at all. I guess I have not gotten used to the fact that all the ‘energy’ I had was driven by the high cortisol levels. I used to be able to spend more time in my yard gardening, helping friends with projects, baking (half of which I would share with friends), entertaining, and even just day to day activities. Now, it doesn’t take much and I’m tired out. I don’t want all of that kind of energy back, but it would be nice to have the feeling of wanting to do a little more. Another thing that is hard is when people say you look so good, you must be feeling so much better since your surgery and you’re off your BP meds. Yes, I do look better because of the weight loss and yes I am happy that I no longer am on BP meds. But there are so many things that they can’t see that are going on inside that they just don’t get it
All of my Drs. strongly suggested moderate exercise as tolerated. Water walking is what has helped me. The Arthritis Foundation has an exercise class at many local YMCA’S and community pools that is taught by certified instructors. This helps with range of motion and flexibility and does not stress the joints and can help elevate your mood.
After many repeat tests and follow-up appointments it was determined that my cortisol levels were leveling out. On April 7, 2011 I had a repeat CT scan. It showed that the tumor has grown. I like many people may not know size-wise how big something is in cms, so I asked. This tumor is about 3/4 of an inch, which doesn’t leave much room since our adrenal glands are about the size of a walnut! I don’t know why I never asked for a comparison before. Maybe because it’s a lot to take in, we don’t always think of those things. As of my last visit in October 2011, my cortisol levels are high but because, clinically, I am doing so well and have lost 14lbs since April 2011, it will be a wait and see until my labs, CT scan and my next visit in April 2012, unless there are any sudden changes. I would like to lose another 15-20lbs but maybe at my age that will be a little more difficult to do, plus the fact I still tire out so easy making it hard to burn off calories.
Many positive things have come out of this journey. I now know what I have. Surgery was the treatment. Some get a diagnosis for a disease but there is no cure, no surgery or medicine available. I have lost 80lbs and no longer look 9 months pregnant! I no longer need blood pressure medicine. My lipid panel numbers (cholesterol, triglycerides etc.) are all in the acceptable range. My appetite has changed quite a bit; I no longer crave sweets and carbs and I drink a lot of water. Since my surgery I have been seeing a Dr. for pain management, as over the counter pain meds do not work for me. I don’t need pain control on a daily basis, but it is there when I know I have reached my limit.
I know that this is a lot of information and it is not even all of what has been going on during my journey but if it can be of help to others who may be faced with the possible thought that they may have Cushing’s Syndrome, then I would encourage them to get advice from a Dr. who has knowledge in this area. (Dr. Findling now feels I have had Cushing’s for 22 years!) Through all this I have learned that we need to be our own advocate. Don’t be afraid to ask questions or challenge something a Dr. has said. Have patience, because sometimes they don’t always know the answer or don’t understand what you are asking them, or you may not even know what questions you should be asking, or you might not understand what they are saying. They may need to send you to someone else to help you get to the bottom of what is going on. Sometimes it helps them to learn to be more informed.
If I were to go back to the day of my diagnosis and was told that I would need surgery, would I make the same decision? Yes I would. Even being faced with the possibility of a second surgery, I would still do it knowing all that I have gone through, along with the fact that I will then have different challenges to face, and if that happens, helps me in that I now have a connection to others who have been on this same sort of path. My one regret is that I wish I could’ve, would’ve, and should’ve made this connection sooner!
Newsletter: Winter, 2011