Guest guest Posted April 11, 2010 Report Share Posted April 11, 2010 Is anyone familiar with LDN and its effect on Cushing's patients? Are there any forum members using LDN for Cushing's or Cushing's related symptom relief? I have a rarer form of Cushing's (hyper-cortisolism) called Psaeudo Cushing's and on top of that, of the numerous causations for Pseudo Cushing's, I have a very rare type of the multiple forms of Pseudo Cushing's (an unfortunate name because it IS hyper-cortisolism, just simply is not caused by either an adrenal gland tumor or pituitary gland tumor, etc. - so they just group all the other forms of hyper-cortisolism not otherwise categorized and call them " Pseduo Cushing's). Anyway, while this probably started in the very late 1990s and began showing symptoms in mid 2002 but they were mild and sporadic. Then in May of 2004, the symptoms exploded into multiple symptoms. I ended up finally at the NIH Hospital in December of 2005 and began a treatment regimen in January of 2006. And my cortisol levels began steadily reducing from that point on. Slowly but surely. Finally in August of 2009 my cortisol levels returned in the normal range for the first time since definitely mid 2004, probably since mid 2002. My cortisol levels were normal in August, September, October, November, and December (2009), however moderately elevated in January (2010) with a 73.1 (normal range 4 - 60) and then normal range again in February and then clearly elevated in March with a (rounded off)level 85. (Note these readings are all 24-hr UFC reading as taken at the first of the month inidcated). I started LDN in mid December of 2009 (1.5 mg for three weeks, 3.0 mg for 3 weeks and then to 4.5 mg - which is where I am currently at). I wondered if it was coincidental that I started LDN in mid December and my 24-hr UFC (which had shown normal range results since early August) now showed an elevated level (73 in range of 4 - 60) in early January testing. Then during January I was off of the LDN for about the whole third week of January (due to an error in amount of prescription initially dispensed and getting that straightened out) and my early February 24-hr UFC cortisol test results came back in the normal range (after being off the 24-hr UFC for a week about 2 weeks earlier). Then the early March test returned again showing a very noticeably elevated level. Now Pseudo Cushing's (of my variety) is known to have instances - once the cortisol levels start getting normal - that the feedback loop to the HPA Axis (that was malfunctioning initially and causing the hyper-cortisolism as the signal was not being received that there was already plenty of cortisol) WILL (in rare instances) revert back to its malfunctioning state anywhere from one to several times before correcting itself completely... or may not ever completely correct itself completely. So that " could " pretty clearly be one of the reasons for the elevation of the cortisol secretions - BUT - it just seems strange that after months of normal range levels, that the first elevated test result level was just about 3 weeks after starting the LDN and that the next test result level was normal after (two weeks earlier) having been off LDN for a little over a week and then the test taken early the following month showing yet even higher elevated cortisol levels (I took my April test around April 2nd or 3rd, so those test results won't be back until towards the end of next week). So, I guess my main question (aside from the first couple) is: Does LDN cause an elevation in secretion of cortisol, decrease the secretion of cortisol, normalize cortisol secretion whether high or low? Or have " no effect " on cortisol secretion??? Thanks for any information. Quote Link to comment Share on other sites More sharing options...
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