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Quote from: Counterpoints on 10/02/2009 23:03:34The only big step I've made is the result of my 24 hr urine cortisol test.Counterpoints, I'm taking a cortisol AM blood test. Not comprehensive I know, but it's a start. If nothing else, it may contribute to our forum databases.I'll post results here in about 27 days from now. Plus re-exams of prolactin, testosterone, etc.I'm still pinching myself to see if I'm truly awake with this new treatment!
The only big step I've made is the result of my 24 hr urine cortisol test.
I would take the test when you are symptomatic.
How long those it take for blood test to get done, i have not seen any results since two weeks i went to doctor.
Quote from: CCconfucius on 13/02/2009 16:28:43I doubt weight could hav anything to do with these. I am considered obsese,but i exericese a moderated amount. is there anybody who is pretty fit and still has these problem. YES, this is an important observation. People with Cushings, and cortisol problems, have trouble losing weight, despite good efforts to lose it (exercise and diet). When did you start gaining weight? Are you still gaining weight, or is your weight stable? Is fat disproportionately in face, collar bone, and stomach areas? Do you have thin skin anywhere? Do you have insomnia? Do you have stretch marks? Do you bruise easily? All important questions when trying to figure out whether cortisol could be part of the issue.I am not obese. (My total height/weight ratio is pretty good). I would probably be considered fit. But I do show some of these signs.
I doubt weight could hav anything to do with these. I am considered obsese,but i exericese a moderated amount. is there anybody who is pretty fit and still has these problem.
Quote from: CCconfucius on 13/02/2009 16:29:40How long those it take for blood test to get done, i have not seen any results since two weeks i went to doctor. CC, my reply post disappeared! It shouldn't take more than 3 days. Call and blame your friend (me) that he says it shouldn't take that long.
Which blood tests CCconfucius?
my family doctor took a month to tell me my overall blood test result.
I already started calling them, my family doctor took a month to tell me my overall blood test result.
Martin, maybe there is something after all to the Taoists who claim semen retention = strength (among other things).
Really good to see this thread thriving so well. Who would have thought it would be so many pages in length ? Big respect goes to you all for creating this support network. A special mention must go to Demografx who has put in so much work to keeping this thread alive and well. He is the backbone.Well done to ALL of you for your reciprocal support for oneanother !
Quote from: martin88 on 13/02/2009 01:14:55Counterpoints, what about ACTH which is secreted by hypophysis to stimulate adrenals ? I think you were tested for this. Thanks for your suggestion for the 24h urine test for cortisol. Do you think it's enough, at first, to do the blood test ? It should show at least a tendency.As far as I understand, the hypothalamus releases CRH, which stimulates the anterior pituitary (Adenohypophysis) to release ACTH, which stimulates the adrenal glands to produce cortisol. My ACTH actually tested somewhat normal. (14 pmol/L, ref: <15 pmol/L. This goes with the 740 nmol/L reading). As far as AM cortisol blood test vs. 24 hr urine... not sure. The reference for an AM blood test is 150-690 nmol/L. I have tested AM cortisol 3 times. (560, 590, 740 nmol/L). So two of these three times were "in reference"... but for my age, quite high, I think. Nonetheless, I think they would have been disregarded by 90% of physicians -- even though it is very common amongst people with cushings and other cortisol problems to only test high-normal on the blood samples.On the other hand, my 24 hr urine cortisol 515 nmol/d (ref: 30-220 nmol/d) is an obvious indicator of a problem. What first caused me to worry about cortisol was a PM cortisol blood test I had (430 nmol/L, ref: 50-300 nmol/L). So, in short, I'm not sure. I think if you get an AM blood test, and the result is < 300 nmol/L, a 24 hr urine test probably won't show anything. It seems what's happening with me, is that cortisol is getting high during the night, when for most people it would be at its lowest.(To those who don't know what a 24 hr urine test is, it's not a big deal. You go to a lab, they give you a container. You wake up the next morning. You disregard your first "sample", and write down the time. You continue to "collect" until 24 hours after the time you wrote down. The container should be in the fridge when it is not being used for collection. After the 24 hours, you give the container to the lab). I would like to note that my cortisol has been highest when I am symptomatic. There seems to be a clear correlation between symptoms and cortisol levels.
Counterpoints, what about ACTH which is secreted by hypophysis to stimulate adrenals ? I think you were tested for this. Thanks for your suggestion for the 24h urine test for cortisol. Do you think it's enough, at first, to do the blood test ? It should show at least a tendency.
Cortisol between 11:00 p.m. and midnight appears to be the earliest detectable abnormality in patients with this disorder. Cortisol secretion is usually very low at this time of the day, but in patients with Cushing's syndrome, the value is virtually always elevated. Although this is a relatively new test, it is currently the most widely studied single test for the diagnosis of Cushing's syndrome with at least eight independent studies from all over the world demonstrating sensitivity of 93-100% for the diagnosis of Cushing's syndrome. In the United States, there is only one FDA-approved assay for the measurement of salivary cortisol in the diagnosis of Cushing's syndrome. Collection of saliva requires special sampling tubes; however, this is a very easy test for patients to perform and can be done on multiple occasions. Salivary cortisol is very stable at room temperature and the samples can actually be mailed to a reference laboratory. Normal levels of late-night salivary cortisol virtually exclude the diagnosis of Cushing's syndrome.
...my POIS is worst during sleep at nighttime. I don't know why this is. Perhaps there are natural changes in cortisol during sleep.
Since I don't generally sleep well, I'm using this as an opportunity to experiment. I haven't slept well two nights in a row for 21 months (during POIS or without).
I don't like to talk about short successes, because I don't want to jinx myself.
Sometimes I'm starting to lose hope I'll know one day, even with all the progress we have made, there is still no real study on us to explain where is the problem.