And It's About Time There Was Some Support For Cushing's!
I've been regularly checking this site for the past few weeks. It's been incredibly helpful and enlightening. Like most of you, I'm presenting with loads of symptoms: huge weight gain, back pain, upper back pain and tingling in my right arm, massive stretch marks, high blood pressure, red face, hair everywhere, buffalo hump, and of course severe depression....
I could see the change in myself in 1992. I had Mono. Afterwards, I piled on the weight. Before that, I was one of those people who could eat whatever and not gain anything. I was active, but not in a structured way. I went from 160 pounds to 190 pounds in a few months. (Now I consider 190 the skinny me!. I went to see my doctor about the weight gain and she told me I still looked great. I am 6'2", so can get away with gaining a fair bit of weight before it becomes really obvious. In 1994, I weighed 205 and lost 10 pounds fairly easily by strength training. In 1996 I gained 25 pounds in three months between my wedding and my very close friend's wedding. It was quite obvious as the dress maker who did my wedding dress did my maid of honour dress and it was so much bigger...
I assumed that the good life had caught up with me and that I was just getting older.
In 1998 I went to see a hypnotist to help me try to quit smoking. My husband and I had decided to try to start a family and we planned on quitting smoking first. The hypnotist told me he wanted to include a weight loss portion in the treatment. This was the first time I actually saw myself the way others saw me. Does that sound weird? I've never been a particularly vain person and was one who didn't think twice about wearing a bikini in front of anyone.
Anyhow...I was to return to the doctor (hypnotist's) office the next week for a follow up. That was fine, I had stopped smoking the first day and lost a couple of pounds. The next week I went to the office and was up 8 pounds. I told the doctor that I thought maybe I was pregnant. I knew I had alot of the initial symptoms, but thought it was early. He ran a pregnancy test which came back negative. He wanted to step up the weight loss portion of our visit and I told him I was uncomfortable as I really thought I might be pregnant. I told him that I couldn't come back. Two days later, I took a home pregnancy test and it came back positive. My twin boys were born 7.5 months later. This was the first time that I decided that I couldn't listen to my doctor, I had to listen to my body.
I gained a lot of weight in my pregnancy, had toxemia and spent the last 3 months on bed rest. When the boys were born, I weighed 290 pounds. When I left the hospital, I weighed 260 pounds.
Shortly after, I took up jogging. I always wanted to be a runner and knew I could do it. From May to September, I "ran" for 40 minutes 4 times a week. I didn't lose a pound. I did throw my knee out, but can you blame it? Trying to run with all of the extra weight? I know it was crazy!
I started the Atkins diet in 1999. I lost 60 pounds on it. I looked great, felt terrific and was really proud of myself. In November 2000 I came down with bacterial pneumonia. I was never so sick in my life. I spent a month in bed. The only up side was that I weighed 185 pounds at the end of it. I had to go off Atkins when the pneumonia cropped up as it is really hard to eat a steak when you can barely get a cracker in your mouth!
Slowly at first the weight crept back, I would cut the carbs out and lose a bit, then it would come back.
In 2001, my back went out and I went to see a specialist. He suggested I lose some weight and told me that I had a herniated disk.
Over the next year, my weight stayed around the 220-225 area.
In August 2001, I became really depressed. I am usually a very "up" person. I found I could barely & rarely crawl out of bed in the morning.
In June of 2002, I decided it was time to get my weight down and get healthy. I signed up with a personal trainer and started cardio and strength training. The trainer gave me a diet to follow as well, and I was eating 1400 calories a day, working out 5 days a week. I bought a treadmill and free weights so I could round out my workouts and keep up with the trainer 2 days a week. I am quite dedicated...I kept a log of everything I put in my mouth and every bit of exercise I did. Six weeks later, I weighed 17 pounds more than when I started. I was a mess...my trainer was also a mess...
I went back to my doctor and asked what I could possibly do. She asked me if I tasted my food while I was preparing it as it could add calories. Pardon me??? It was clear to me that she didn't believe me.
I dropped my anti-depressants, figuring they must be to blame. I felt fine all summer, but in early September the depression came back full force.
I hired a nutritionist to give me some insight. She suggested that I follow the same diet that had put on the 17 pounds. I told her I wasn't willing to take the chance of gaining more. She left and I said good riddance.
In September of 2002, I was doing some research and came across PCOS. It sounded a lot like me, although I had no fertility problems. I became convinced that the reason that I lost my weight so easily on Atkins was because I was insulin resistant. It just made sense! Finally!
I was tested and my insulin is perfect.
I saw my gynecologist and she tested all of my hormones and did up a ton of blood work. The one thing that jumped out of the results is that my DHEAS levels were high. She put me Diane-35 (BCP) and told me to keep an eye on my blood pressure.
In January 2003, I left my trainer (too expensive! and joined a local gym. I had a fitness test done and my fat levels were disgusting!
I kept checking my BP at the gym and it was skyrocketing. I normally was 110/70 and suddenly it was 145/95. I told my gynecologist and she told me to trop the Diane-35.
She sent me to see a doctor across the hall from her to see if he had some insight. He runs a weight loss clinic. They handed me his folder on his "plan" and came back ten minutes later apologizing as I was there as a medical patient. I thought that I was wasting my time.
He sat me down and went through every single symptom that I had. He asked me if I had stretch marks. I said "huge ones!" in fact a couple were starting to bleed. He looked at them, did a couple of other tests, chatted and sent me off with a requisition to do a 8 am 4 pm cortisol test. He knew I had already booked an appointment with an endo, so he cc'd him on the results.
I went home and started searching on what he was checking me for. Again Cushing's came up, but I had dismissed it as being too rare and I couldn't have it.
I came across this site (THANK YOU SO MUCH! and read some of the bios. I was in tears. I could sooooo relate to so many of the stories.
I didn't know I had a hump until I went looking for it and compared myself to everyone else. I didn't realize that the fact that I looked like I was in a constant state of sunburn could be related to all of my woes. I didn't realize that I couldn't see my ear lobes if I looked at myself straight on.
A week later, I got the results. My cortisol was right down the middle.
I met with the endo a couple of days later, came armed with a sheet full of all of the things that are currently wrong with me. He looked at me and said I didn't look Cushingoid. He did remark that I had the hump and all of the other things. I think he was ready to send me packing until I handed him old pictures of myself. He was clearly shocked. He handed me a requisition for a low dose dex suppression test.
I received the results today, I suppressed "beautifully".
I asked what the next step was and he told me there was nothing more he could do. He was sending me back to my family doctor as there wasn't anything wrong with me in his area of expertise. SLAM. He had tested for cortisol, potassium, sodium and calcium. They all came back perfect.
According to my blood work, I am the healthiest person alive. Lucky Me.
Cherri, I really related to your post and your bio. I felt that some of the things you wrote were what I would say, verbatim.
My husband is incredibly supportive, thinks I look wonderful at any weight and wants me to see this through. He suggests that I go back to my family doctor and ask to have the 24 hour UFC test done fairly frequently. I hope she will go for it.
Meanwhile, I'm at the point where I don't want to go out. Don't want to see anyone, or have anyone see me. In the last 2 weeks I've gone up 15 pounds. I'm incredibly depressed and frustrated. I'm sure the people at my gym don't know what to make of me. They see me there almost every morning and I keep getting bigger and bigger. How much must I eat?????
Thank you all for being here, for listening, and any advice would be greatly
appreciated. I'm in Ottawa, so any suggestions on anything specifically Canadian
would also be appreciated.
I was getting sicker and sicker, my weight was climbing by 5 pounds per week and I could no longer go to the gym. I would get on the elliptical trainer, and within seconds would be at my target heart rate. I was worried that I was going to have a heart attack. After seeing several unhelpful doctors, running several "normal" UFCs and having a "clear" MRI, I contacted Dr. Ted Friedman in Los Angeles. He said he wanted to see me, so my husband and I went to LA.
I was really nervous about seeing Dr. Friedman, as I didn't know what I would do if he didn't think it was Cushing's. I was terrified that I'd be back at square one. The day of my appointment, we went for lunch at a Chinese restaurant where we got fortune cookies. The 2 cookies were on the table and I had this strange need to pick the one furthest from me. It read: "look to the coming month for a solution to your problem".
That night, Dr. Friedman went through all of my lab work, did a physical exam and went through my history.
He told me that he "definitely thinks I have Cushing's". I cried. I was so excited I couldn't believe it!
He reviewed my "clear" MRI films and thought he saw something suspicious, and wanted me to meet with Dr. Shahinian, a well-respected neurosurgeon at Cedars-Sinai. I also did a midnight (my time) blood cortisol test and 2 24hr UFC/17OHCS tests while I was there.
Dr. Shahinian reviewed my films and said I needed to have a dynamic MRI done, as the films were really bad quality. I opted to have the MRI done at home in Canada, as it would be free there.
On my return, I found out the MRI would be in 4-6 months. Non-urgent would be 12 months. I was so upset! I couldn't possibly wait that long.
I opted to have one done in Washington, DC that month when I went to visit my in-laws.
The results came back saying they saw a possible adenoma of 2mm. No one other than a Cushie can understand how excited I was to have a brain tumour!!!
My bloodwork came back from LA with my midnight blood cortisol at 12, 7 is diagnostic for Cushing's! My 24 hr UFC came back normal, and one of my 17 OHCS came back quite elevated. Finally the biochemical evidence is in too!
I went to see a neurosurgeon in Toronto who reviewed my information and decided that I didn't have Cushing's. He thought I did when I got there, but once he heard that I done research on the subject, and had gone to the States for my diagnosis, he changed his mind. He also said he didn't see any abnormality on my MRI films.
I was back at square one. Throughout this whole journey, my family doctor has been cold, and sometimes downright rude, and it took me a long time to figure out what was going on. Even though I was getting the biochemical evidence, the MRI showed the tumour and I was suddenly 110 pounds heavier than my normal weight, she still didn't believe that I had Cushing's. It's hard to explain how frustrating that is, but I know a lot of other Cushies have gone through it too.
I couldn't even get an appointment with a neurosurgeon, and was being told by every endo that I approached that they would only accept high 24 hr UFCs as evidence of Cushing's. I have NEVER had a high 24 hr UFC. I am cyclical and I lucked out that I was on a high cycle when I saw Dr. Friedman. I cannot wait another year for testing while my body falls apart. I cannot get through the day without a nap. My muscles are deteriorating so quickly.
I make the decision to go and have Dr. Shahinian do my surgery. Dr. Friedman confirmed my diagnosis and I called and booked an appointment for the 15th of December. I had 5 days between my booking and leaving for LA. Of course, I didn't have the money at hand, but cashed in all of my RRSPs (401K). We also re-financed our house.
My surgery was done on the 15th. The first day in Intensive Care is a bit of a blur, but the 2nd day, I was feeling quite good. I did develop diabetes insipidus, but otherwise I did really well. I went back to the hotel on the 3rd day, and stayed in that day. From the next day onward, I was out walking around, going out for dinners, and feeling really good. I still needed to have naps most days, but I couldn't believe how good I felt.
I returned home on December 21st, just in time for Christmas and felt really good over the holidays.
I've steadily improved, since my surgery. Immediately I noticed my mood was so much lighter, my depression was gone. My energy has been good, I've hardly needed any naps since, and I am thrilled to be on the road to recovery. I lost about 10 pounds immediately following surgery, but haven't lost anything else since, but haven't gained either which is wonderful. I've started to wean my Cortef, and that seems to be going well.
We won't know for sure if I've been cured for some time, but I am confident that I made the right decision, and the money was very well spent!
I have weaned off of the cortef and I lost 10 pounds in 10 days. I know it won't all come off that fast, but it sure is nice to see it moving in the right direction!
Thanks again to Mary and these boards, as I certainly wouldn't be in my present situation without them. Thanks as well to everyone here for their constant support and understanding.
My next goal is to get more information out in the media. I did an interview with a local news crew regarding my trip to the States because of the delay in getting an MRI here. Apparently they now want to do a full segment about Cushing's. I hope that happens because I'm sure there are plenty of other people out there that have this horrible disease and don't even know it.
Sally
