And It's About Time There Was Some Support For Cushing's!
I do not have an official diagnosis yet. I have had quite a run around with doctors though...
My last urologist was treating my calcium kidney stones. I was on two medications and still had high calcium in my blood and urine. I was taking 1000 mg of Uricit-k and 1/2 a 40mg.? tablet of hydroclorithioside. My dosage was then doubled because of my weight and still recurring kidney stones. This was in hopes of preventing my kidney stones.
I noticed that many times the Uricit-k pills would pass through my body and not be absorbed. And still I made kidney stones!
I then had a kidney stone made of brushite. My urologist wanted to put me on another medication specially made by the Mayo Clinic to be taken three times a day! At the same time my urine calcium levels were still high. He was not concerned...
I had done some research on the internet on hypoparathyroidism and did not fit the profile. Still, two things that caught my attention was that if this disorder was not treated, you could run the risk of calcification of the kidneys. And that osteoporisis will not go away with any amount of eating calcium rich foods, pills or calcium building percription drugs.
Before my last appointment with my urologist, the x-ray tech told me I had a tumor. I assumed it was on my parathyroid...
After this CT scan, I asked my urologist why I was making kidney stones and he plainly said, "I don't know..." And then said that the chances of having a kidney stone at my weight was greater than if I were 100 lbs. lighter... Note, he never told me about my tumor! Nor did he tell me that burushite stones are another calcium compound stone!
Not happy about taking 3 different medications to prevent kidney stones or the fact that he couldn't be upfront and honest with me, I decided to look at my problem from a different way and leave that urologist.
At a health fair at the local college, I had a bone scan on a portible machine--11/04. It said that I was in the last "normal" number before the second stage of osteoporosis! I was shocked to hear this considering I was a 40 year old man!
I made a list of the symptoms I thought were important and gave it to my doctor. He said that he didn't want any blood or urine at this time and that he would get back to me. This was in mid-February 2005. He just retired in December 2005 and dispite many phone calls to his office, talking with the nurse and even putting my file on his desk for a month, he did not see fit to make a recommendation to me or to even say that he thought my concerns did not justify making a recommendation...
I found my own endocrinologist. I had to get my records from two urologists and my family doctor. That took some doing considering my second urologist is 100 miles away in Birmingham. My old urologist charged me $32 for copies of my records!
I found out that my last urologist knew about my tumor (which happened to be a tumor on my left adrenal gland) for 2 years and said nothing to me about it!!!!!!!!!!
By the time I got an appointment with an endocrinologist, I had found a little out about Cushing's and thought I might have it.
I have had a history of calcium kidney stones starting in the spring of 1987. About that time, I started unraveling emotionally and putting on weight. I've put on 100 lbs. since then and did not change my eating habits. In 1994 I started having the redness in my face and the hyperpigmentation on my legs.
In 2000 to 2001 I went on a protien diet trying to make an ex jelous by loosing a great deal of weight. I hardly ate any carbs. I often checked my urine for ketosis. Seldomly I had "trace" amount of ketosis. And only a few times did I have low amount of ketosis. I aerobic walked for two hours a day. I rarely failed to do so--I had a reunion to motivate me... But over a year, I only lost 30 lbs.!
I found out on the second visit with my endocrinologist that things were not going well. He, a 67 or so year old, did not listen to me when I said I was a musician and go to bed about 5 in the morning.
I had the Dext. suppression test. I took the medicine at 11 P.M.. I ate two hours later. I was afriad of not waking up for the blood to be drawn at 8 A.M., so I didn't go to sleep. My test results said I was "normal" at 0.9. I was a little surprised and looked on the internet and discovered that the test was practically useless because I didn't go to sleep, nor was it given in my typical sleep hours. He simply did not listen to me!
When I had my 24 hour urine, the instructions said after the test to bring it to be tested immediately. I took a shower,got ready(taking about an hour or so) and got over brought in the urine and have blood drawn.
I had a diet vanilla pepsi on the way only to find out that I was supposed to fast for 4 hours before having my blood drawn and I would have to come back.
When I did come back 4 1/2 hours later, my urine had still not been sent off! Then they told me that another test needed for me to have blood drawn soon after I wake up. I was really annoyed. I found out that only 1 of the 5 ladies in the office drawing blood was a full time employee. The others were work study students who were hoping to do this full time after graduation! There were just way too many chances for error with my testing.
I had the results of my testing and my endocrinologist said that all the levels looked "normal."
I had doubts now about the testing, and his ablilites and was not convinced that everything was ok.
I asked him about the bone scan I had done a year prior. He laughed and said that those machines are not reliable. Grudginly he scheduled me for a bone scan.
Two weeks later his staff calls my beeper/voice mail and said, "The test results of your bone scan are in. You have osteoporosis. Call and make an appointment to discuss treatment..." The soonest I could get an appointment was 3 weeks later...
He discussed hormone levels and then said, "You know, maybe you should have a bone scan..." I lost it and said, "I had one done 5 weeks ago. Your office staff called me in and said I have osteoporosis and to make an appointment to discuss treatment..."
He gathered his composure and then gave me the results. "You see here... One scan in your hip suggests that you are in the beginning of the second stage of osteoporosis. The other scan in your hip and the one in your spine suggest that your are in the middle of the second stage of osteoporosis... I can give you a perscription to build back you bone mass..."
I then said, "But what about my problem with kidney stones?" Then he said, "Oh... Well, then come back in two years and we'll have another bone scan..."
I requested my records for my new family doctor (and for the second opinion...) and requested them Thurday before Christmas 05. I did not get them until two weeks after New Year's! I was not impressed with their promptness.
I looked at my tests and discovered that my progesterone level was 8.0 when the suggested range is 3.5-7.0. He did not bother to mention this to me...
I was also taking Avandia; I have pre-diabetes. I read on an interview with an endocrinologist on your web site that test results may not be accurate when the patient takes this medication... Another reason to doubt my former endocrinologist...
At this stage I feel that if I waited two years before I did anything about my health that I could be so low on bone strength that I could fall, break my hip and need to be cared for in a nuring home!
I'm a 41 year old man, doesn't that send out red flags that something is really wrong with me?
I'm in the process of getting a second opinion from a doctor that my new family doctor, and a friend with Cushing's had recommended...
We'll see... If I do not have Cushing's, I still have chronic kidney stones, osteoporosis, and an left adrenal tumor.
I also think I have other symptoms: gynomasita, sweating, lack of sleep, big time depression, anxiety, weight gain in the middle, hyperpigmentation, body odor, skin tags, moon face, buffalo hump, excessive thirst, frequent urination, edema, and other things I can't think about right now...
Thanks,
Morgan
