And It's About Time There Was Some Support For Cushing's!
My name is Jack Dean, I am a thirty-eight year old divorced father of one. I had pit surgery to remove a 6mm tumor on June 1st 2000. The symptoms that led up to my diagnosis and successful surgery go back several years. I first noticed that my overall health started to decline in 1995. I have always been a very athletic and fitness conscious person. I would run over 25 miles a week and work-out at the gym at least four times a week since 1988.
I do a military physical fitness test every year and at that time my scores started to decline steadily. I was always the fastest runner out of the three hundred men in my National Guard unit. I run a lot and I was getting slower and slower while being able to do less distance. By 2000 I was finishing in the middle of the pack during the PT test. Over a five year period I went from leading the pack to being at the back of the pack.
My workouts at the gym were suffering and no matter what, I could not lose weight. I have always been able to adjust my weight easily by diet and exercise. I would diet and exercise to lose weight and only be able to maintain it, but whenever I would go to a normal diet that should maintain my weight, I would gain. In 1995 I weighed 175 lbs., just before my operation I weighed in at 216 lbs. The last three months I gained 10-15 lbs. Most of the weight was in my pot-belly. I just started to get a moon-face just before my operation.
My yearly physical also showed an increasing BP rate and cholesterol level over four years. Other symptoms were a sharply decreased sex drive along with performance problems. I had severe fatigue problems that caused me to take naps all the time and even sleep on the couch all weekend when I was not sick. I would lose my temper easily and I had very little patience. Any cuts or bruises that I would get would turn a funny purplish color and take forever to heal. If I would get an insect bite it would turn hard and not heal hardly at all. Three months later a mosquito bite would be like a purple-white scab. I would also get up often at night to urinate, sometimes four times a night.
Just before my op I was put on high BP medication. It got to the point that I was stopping several times on my runs and walking. These symptoms steadily got worse over a five year period, I finally went to my doctor and said that I know I am getting old but it shouldn’t be this bad. He ran some tests that showed my thyroid and pit hormones were off, he referred me to an Endo. My Endo ran the dex tests and a 24-hour urinary cortisol test. They all came back positive for Cushings with a 256 on the urine test. My first MRI showed the tumor. She referred me to a neuro who repeated the MRI. The whole process from GP to neuro took about four months. I was helped immensely by my great doctors and the fact that all of my tests pointed to Cushings. The diagnosis time would have been shorter by two months, but there were long waits for getting appointments, doctor’s vacations, and waiting for MRI times.
I think I have had the tumor longer though. Since my op some symptoms have went away that I have had for most of my life. I no longer bite my fingernails at all. I have been a lifelong fingernail chewer. I no longer stutter like I used to, I have always stammered at times. I am also much calmer than I ever have been. I can think through a crisis without getting excited. In 1993 I suffered a stress fracture in my lower back. I later learned that this is common in people with advanced Cushings. These symptoms point to the fact that I have had a pit tumor for a lot longer than I had thought. I use the 1995 date as a date that signifies my obvious Cushings symptoms.
My weight is steady for the last three months. I no longer get up in the middle of the night to pee. Before my op I would go three times at least. After the op once a night and now I can wait until morning. Isn't this a strange disease?
I am having some problems with my memory. In some ways it is better but lately at work I am making mistakes that I haven't made in years. I work on helicopters and I do not want to kill anybody because of my bad memory. I see my neuro soon and I am going to ask for his advice and some memory tests to see if I am ok.
My soreness is gone, I am back at the gym now and my muscles are fine. I can work out now and it isn't excruciating pain anymore. I still do not see how I ran that much with the problems I had. I must have other problems, too. I think that within a year I can be back to the same stage I was five years ago.
Cortef is down to 12.5 a day. I cut down when I can and enjoy my life and don't worry about it anymore. That little pill is no big deal, it is my best friend now. I had to go up to 30 when I was sick at the end of Jan. I think my system is still weak because it seemed like I had a very hard time fighting off the virus I had. I almost went to the hospital at first and then I got better but I couldn't quite shake it off for a long time. Do you other post ops have the same problem when you are sick?
Have to go I just finished throwing a frisbee and kicking a soccer ball with my daughter, her friend, and my fiancée. I love you all.
There are very few men who have Cushings Disease or Cushings Syndrome. Jack is one of them. We are very fortunate to know Jack. He had Cushings Disease and his surgery was June 1, 2000. What follows are Jack’s postings on recovery from his surgery. This is very helpful and useful information.
Surgery went great the tumor was on the surface so it was removed with minor damage to the pit. Rough couple of days but I am doing so well now I was discharged about an hour ago. Still very tired just wanted all of you to know I am fine, will post again soon...
Operation for me was much easier than I thought. The worst part was removal of the nasal packings "rhino rockets" and catheter. The first day I just wanted to sleep and drink water. Never was in any bad pain, Whenever I would start to get a headache the nurse would give me a shot or some pain pills and that was it. I could even touch my nose and it never hurt. It does feel congested and I am not allowed to blow it for awhile. I was moved out of ICU after two days, Mainly precautionary. I would feel normal then get very tired and rest then I would feel good again then rest. Very thirsty all the time. The main concern was " diabetes insipidus". That is probably spelled wrong. It is when your pit is not fully functioning and causes your kidneys to flush all the fluids out of your system. After that cleared up I was cleared to go home. Am on Cortef now, they will taper it down after a few weeks when my system stabilizes. The tumor was on the surface so it was removed with little or no damage to the pit. The neuro said it should be fine. No complications so far, I am very blessed. Right now I feel so good it’s scary. I feel like getting out and doing things but I am not going to. I am going to take my time and not overdo it. I am not allowed to do any strenuous exercise until my neuro clears me. I am allowed to drive, take easy walks, and other non-strenuous activities.
Today I am very tired. I think I had too much going on yesterday. Very important to just lie down and drink water with no distractions. The only person in the house for the next few days is my mother and I. Feeling much better already after houseguests have left. Peace and quiet very important at this time. Have taken some Tylox when my face feels swollen and tight. I think it is starting to wake up and heal. No headaches since leaving hospital. Will get rest of nose plugs removed Thursday by ENT and see my Endo also. Will be so happy when I finally get to blow my nose. Am taking 20m Cortef in the morning and 10m in the late afternoon. So long…
Hormone rollercoaster is getting better. Went on a ½ mile walk with my dog yesterday, felt pretty good. Drove my car for the first time today to see my Endo and the ENT who did part of the surgery. The ENT pulled my nose splints out. This hardly hurt at all compared to the rhino rockets that were in my nose before. Energy level getting better every day. My blood pressure still very high. My Endo supplemented my BP medicine and cut me down to 15mg Cortef a day. Every day better than the last mentally and physically. Appetite still off and I still can’t smell or taste anything. The only pain I have is mild discomfort from a nose that feels like it is huge and swollen, doesn’t look that bad though. Went into a deep sleep nap this afternoon when I got back from the doctors. I think I was in a coma for awhile. Thought I was doing great until Nicole told me she is already working part time. Am going to try and fix my dryer and take my little girl to the movies tomorrow. Very hard not sneezing but the thought of blowing my brains out my nose keeps it in check. When I was in the hospital whenever I would cough it felt like I was being hit over the head with a sledgehammer. ..
Have been waiting until I felt better to post but I am still waiting. Three days in a row of feeling bad with flu-like symptoms. I do seem to feel a little better at night. Today I awoke with a headache and feeling sick to my stomach all day. Barely ate anything. Nose is healing great, tenderness going away and swelling down. I think I will have the world record for naptime soon. Before my surgery a friend of mine told me that the surgery was the easy part. The post surgery treatment was the hard part. I understand what she was saying now…
I felt much better yesterday and today. What an awful weekend. Have noticed the soreness in the joints people talk about. Appetite is way off; Lots of foods make me sick to my stomach. Did light yard work for half an hour and rode my bike for 15 minutes today. Will do a little bit more tomorrow, it was around 95 today. Weight finally starting to come off. Was kind of worried that they didn’t get the whole tumor because my weight has been consistent even though I am not eating much. Main post-op concern before surgery was weight now it is feeling better. Everything much better now, still a ways to go but looking up…
My hands and feet feel arthritic. Joints feel very sore and swollen. I look like a little old man when I get up and walk. I started laughing when I got up before because I was so pitiful. I need a full time masseuse that would be heaven right now. Everything else still getting better slowly. Tried to walk my dog, Brutus, today. That was a disaster, I almost couldn't finish. It showed me I have to be very careful, I am still very weak and this 95-degree heat is brutal in my condition. I am curious to find out how many of my problems in decision making and performing under pressure is tumor related. Am being patient and biding my time, call me Mr. Lazy.
Almost three weeks now and I am still here getting better slowly. Kind of down today because I had to lie down and sleep for three hours today. I didn't feel well and didn't do anything. Other days I will be fine (no naps); it is kind of confusing because just when I think I am getting a lot better I have a day like today. One strange thing I have noticed since the surgery is the skin on my face is so dry it peels. I never have had a problem like that before. The main problems I am still having are the soreness in my hands and feet, my whole body really, but especially in my hands and feet. Fatigue is still a problem, but not as bad as last week. The weight is not coming off as fast as I would like but I can tell it will come off faster when I can start exercising regularly again, six pounds so far. Oh yeah, I am still nauseated by most foods and I can only eat half as much as I used to. I thought it was due to post surgery symptoms. It has been three weeks and it is still the same. When I look at the overall picture if this is all I have to gripe about, I am very fortunate. I am improving steadily and my little girl (Hannah Jane, 4) loves me, what more could I want. When I was awaiting surgery it was hard to find a lot of details about the surgery or post surgery details.
Good news. I was put on high blood pressure medication four months ago after three years of steady increases in my BP. My Endo even supplemented my medication with another med one week after surgery. Now my BP is averaging 138 over 82 without meds. My second number (diastolic I believe) was averaging in the 100 range. Moon face is gone also. Continuing to improve, in the last week I have changed the oil and spark plugs in my car, cut the yard and trimmed it, washed my car, washed my dog, and various other jobs. All this out in 95 degree heat, I just take my time and drink lots of water. I have found out that lying around when I do not feel so good doesn't make me feel better so I start to move around and do something and I usually end up feeling better. I even went out on a date; the wine with dinner affected me faster because I have not had any for so long. Hangover not nearly as bad as before the operation, no headache at all. It was kind of strange to be out in the world again. Everything has been tumor, tumor, tumor for so long that I forgot about the outside world. My feet and body are still very sore, no sharp pain, just an aching that hurts when I walk. I am taking Ibuprofen for it and it helps a lot. Go for more blood tests at my Endos Monday. They mailed me lab results that said my T4 and electrolytes are normal.
Lots of ups and downs since last posting. I was doing great until Sunday and then the bottom fell out again. I couldn't get off the couch for three days. I had a post op appt. with my neuro and he said its just cortisol withdrawal symptoms and maybe I need to up my Cortef a little. Started feeling better Wed night. Friday is the first day that I have felt "normal" since before the operation. I felt good, no "funny feeling". I get a certain week feeling when my hormones are off. I functioned normally all day and did everything without any problems. Hard to explain, but I felt like myself again ( best feeling in the world). Today I am still feeling better, starting off a little slower, but still good. When I can get off the couch I try to stay active. I ran for the first time Friday, though not very far or fast. I was surprised that I felt like running. I have been walking with Brutus regularly now from 2.5 to 4 miles. I plan on returning to the gym this week. Have also ridden my bike several times. I wanted to return to work next week, but my neuro wants to put restrictions on my return and I have to have a full clearance to go back for my employer. So I might have to sit out for another week or two. I will find out Monday. My feet and hands are much better. My Endo gave me Naprelan 500 for the soreness. It is a time-released version of naproxen sodium, which is Aleve. Soreness still there though not nearly as bad. The upper part of my mouth is still numb from the surgery. My nose looks normal and feels great. The left side still feels like it is half stuffed. The weight is coming off slowly. is half stuffed. The weight is coming off slowly. Still holding at eight pounds lost.
Today is the one-month anniversary of my operation. I plan on run/walking this morning with Brutus and a new friend. I also plan on meeting my ex-wife and daughter for an outdoor concert the city puts on at a large park in the middle of town. Remember we are all just cortisol junkies...
I am still making good progress. I have had three good days in a row and counting. On my good days I try not to do too much now and it seems to help me stay that way. Soreness still there but not as bad. Either the meds or I am getting used to it. Weight is still not coming off; I went back up a little so I have only lost five lbs. since the surgery. I can almost blow my nose again. I still have to be careful on the left side. Appetite still way off. Cannot eat as much or certain foods. On my bad days I noticed my attitude would get real down. I guess a type of depression takes over and makes things worse. Feeling more normal by the day. It is just a matter of time and things are good again. I will be going back to work next week. I had a clearance from the Neuro with limitations. To go back to work I have to have a full clearance so it will be one more week.
Going on week six and I am doing great. I have had six days in a row of feeling great, not just good, great. Fatigue is no longer a problem. Granted I am not doing a whole lot but I do not take naps all day or lie on the couch all day. I am having problems sleeping. I take half a sleeping pill to knock off at night. If I do not, I feel wide awake at night and do not fall asleep until after 3:00 am. My feet and hands are still slightly sore. Fingernails are back. High BP still gone. Dry skin on face gone. Weight starting to drop again (8 lobs). My temperament is much better. I stay calmer now in all situations. I still get upset sometimes but not nearly as bad as before. Nest appt. with Endo is in Aug. I am going to ask for a bone density test. She told me before the operation it would be a good idea. Her nurse told me I could taper Cortef whenever I want and if I feel too bad to go back up. I will try after first week of work. Go back to work Monday. I am starting to feel a little nervous. Just a little bit. Laying on the couch one month after the operation and feeling worse than when I got out of the hospital was depressing. I started to think about ever being able to do my job, raise my child, or functioning normally again. When I was tired my outlook would get real bad. I know now that it wasn’t the fatigue causing my (depression) it was the incorrect levels of hormones in my system. It always coincided with the fatigue, which was caused by the same thing. They were right about feeling better than before. I am so happy and at peace right now. I hope it lasts because right now I feel very good. I have run/walked four miles five times this week. I even ran for four miles straight once in 95-degree heat. Probably stupid but I felt like it. No ill effects afterward. I will go back to the gym within a few days. My arms feel weak from nonuse.
Remember there is a light at the end of your tunnel, keep striving for it and you will be there with me. Don't give up.
Tumors suck...
Ran 4.5 and walked .5 with Brutus after going to work today for the first time. I was supposed to start Monday but they called and said I could come to National Guard drill if I wanted to. Granted I did not do very much today but it was nice to be back. The only problem I had today was sore feet. Appetite is nil. I was so calm and relaxed all day. I have always been kind of nervous in groups of people. I would never speak up. I am so calm and clear-headed now. Makes me wonder how long I have had this tumor. My head doesn’t get “muddled” like it used to. I hope it stays that way…
Six weeks after surgery and I walked and jogged 7.5 miles in one day. Went back to work Sat and am still doing fine. Hardest part about it is staying on my feet for long periods of time. My feet are still sore from the cortisol withdrawal. Not as bad as two weeks ago but still sore. I am still feeling calmer than before, even my cortisol stays at the level that I am taking orally no matter what. When it should go up naturally, when I should be mad or when my car breaks down, it stays low. Maybe when my pit wakes up I will have a more normal temper because right now it is nil. Does this make sense? My nose is slightly numb in some places but I can blow it normally and even pick it if I want to. Am sleeping easier now that I am getting up early and working. I am beat when I go to bed. I hardly stutter or stammer at all any more. Before, I would at times, now I calmly keep talking. This is one of the reasons I think I have had the tumor a lot longer than I originally thought. My fingernails are thicker and still there. I cut all 10 of them yesterday for the first time ever. Another strange thing I noticed is I do not do the daily crossword puzzle anymore, before I ALWAYS did it for the last two years. This is a strange little disease. How come we are so lucky? Don’t give up. There is light at the end of the tunnel.
My prayers are with you all..
I still have all ten fingernails. I will cut them for the second time soon. My temperament is still very calm. I hardly get upset at anything. Even my ex-wife doesn't get on my nerves anymore. Bad drivers don't faze me either. You will not realize how wound up and tense you are until your $#^%&*&^ tumor is removed. Everything is different; you will surprise yourself how you react in certain situations. Your whole perspective changes. Your brain functions much better also. Thoughts are much clearer when not soaked in cortisol. When dealing with my little girl I notice I am extra patient and understanding even when she is being bad. When I read her stories tonight I noticed I am a better storyteller, I took my time and enjoyed it much more. I know this sounds stupid but this is what I observe. I am walking or running at least 3.5 miles every day again. Took a break last week, because my feet were killing me. They still hurt but I can't sit still with this potbelly of mine. I am so pitiful running. I can barely run at all. This from a guy who five years ago could run 15 miles at a time and actually RUN it.
I am starting to lose weight again. I was down to 204 this morning from a high of 214 the day before surgery. Shooting for 200 soon. I am eating lots of poultry, brown rice, and veggies. Will start going to the gym tomorrow for the first time in two months. Longest layoff in 12 years. Before a week was the longest stretch I missed.
My feet are still aching but even the week layoff didn't help alot. I figured if they are going to hurt anyway I might as well run. Hands are the same.
Energy level getting better every week. I am almost back to normal. No naps. I am sleeping better now that I am working again. No sleeping pills. Still taking 30 mg of Cortef a day. 20 mg in the morning and 10 mg at 3:00 PM.
I can't express enough about how much calmer and at ease I am. When my Endo finally diagnosed me with Cushings, I remember she asked me if I was nervous, tense, or irritable and I told her no, because I didn't notice any changes. I guess I have had this for most of my life. Looking back I know now that I was always tense. I always felt I was behind and catching up. No matter what I did it wasn't good enough. In social situations it was hard for me to relax, I was always nervous. Even when I was relaxed I wasn't really calm. I was always wound up inside no matter what. If I lost my temper it was very hard for me to calm down. Now if I do get upset I calm down quickly and my anger is minimal. I am very relaxed in situations that used make me very nervous.
My situation might not apply to all of you but believe me the excess cortisol is really affecting your entire state of mind. From day to day situations, interaction with everybody, and your peace of mind. You never really relax with all that cortisol in your system. It even will make you paranoid to some extent. Remember you are under control of a very very powerful hormone that attacks you physically and mentally. The physical symptoms are easy to see and notice but the mental effects are often unnoticed because your mind thinks it is functioning normally. In reality the mental symptoms are there as much as the physical ones.
Remember to keep track of mental symptoms when talking to your doctor such as irritability, tenseness, paranoia, bad temper, not being able to relax, depression, etc. This along with your physical symptoms might help convince some doctors to pursue a Cushing’s diagnosis. Hope this helps you join us in getting off the cortisol train. Good luck.
It has been over nine weeks now and I am still making steady progress. I have gone from 30 mg of Cortef to 22.5 in the last week with no bad reactions. I tried to go down to 20 but I started to feel funny so I tried 22.5 and I have been ok since. Nothing much has changed lately besides the Cortef taper. I have noticed that my cuticles look as good as my nails. I guess the cortisol made both of them unhealthy. Have trimmed my nails two or three times since surgery.
I broke 200 lbs. finally. I was 199.5 with 21% body fat yesterday morning; I was 214 morning of surgery. They tell me that after the op the weight just drops off by itself. I have been dieting extremely well and exercising like crazy, I am losing steadily but I should be losing a lot faster. My energy level is almost normal. I can run for over five miles at a time now. I have started to go back to the gym and am having good workouts.
I had a bone scan done to assess any damage, should have the results back soon.
Tapered my Cortef to 22.5 mg from 30 mg without any ill effects. My main problem is sore feet and hands are so darn sore. When I get up in the middle of the night to take a whiz I can barely walk at first. The soreness is worse when I sit for awhile. If I keep on walking around it is ok.
I am off Cortef right now, I forgot to take it yesterday morning so I decided to see how I would do and so far I am ok. I have not taken any today or yesterday. This is not recommended but I feel like my pit might be producing again. I was on 30mg until last week when I went down to 22.5. I am a little more tired and I have Denyse's stretching feeling. Other than that I am feeling good. Everything else is still going great, except for my feet of course. I cannot wait for these tootsies to feel normal again.
I will keep this as proper as possible. I do not want to offend anyone so do not read anymore if the discussion of sexual problems bothers you. I have not mentioned my libido problems that I had before the surgery because since my surgery I have not had a chance to find out if I still had them. I have been single with no steady girl for quite awhile. However things are changing, I have felt the desire come back and after several "dates" I finally got lucky and I am proud to say I did very well. Not quite as good as five years ago but much, much better than the last few years. I am not dead yet. Maybe with lots of practice I will be back to my old self soon.
It still amazes me how much the excess cortisol affected almost every part of my life. From relationships, attitude, temper, sex, energy, diet, and on and on it made everything worse.
Had to start taking Cortef again after 2.5 days of cold turkey. I could take the lower energy levels at first but my body just started to get sorer and sorer until I had to pop a pill. I am taking only 20 mg from 22.5. Denyse you were right again even macho Cushingman could not go cold turkey. I thought my pit was doing ok after two days but then it got worse and worse.
Soreness still main problem. I hate to sound like a broken record but it really hurts and is aggravating.
I am running over 20 miles a week and am back in the gym again. First workout was pretty bad bout I am steadily improving. The two month layoff made me a weakling but I shall return to my old form its just gonna take some time.
Weight down to 195 last night from my pre op level of 214. Lots of hard work and exercise but before op I would do all this and still gain. Now the weight loss is gradual but steady. Still have a slight pooch in my belly but it is getting smaller.
Have been practicing a lot lately and despite some minor setbacks things are great. Main thing now is getting used to having sex again. Its just like running or anything else, you have to practice. My four-year period of little to none affected me greatly. Getting used to being with a woman again and everything from kissing to touching takes time.
Still waiting on bone scan results.
Jack
