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denney

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  1. Hi Mary, I had to mull this one over. At first I was surprised that given the seemingly "moderate" symptoms she described, she was able to get diagnosed what sounds like pretty quickly. However, I am guessing the prolactin issue is pretty visible for docs and undeniable, so maybe easier to diagnose. I am grateful for the awareness that she has been able to raise and the fact that she does not have classic physical symptoms hopefully heightens awareness by doctors that some patients present that way. I do wonder about the details of the condition of the person that died and what happened. The way the article is written, made me wonder about the circumstances surrounding his illness. Interesting article. den
  2. Definitely worth the read Mary. It was all good info and interesting that the experts don't always agree on the details. One of my favorite points was the one they made about the inadequacy of the low dose dex test. Hopefully, this gets more and more known among endos and stops preventing patients from being evaluated. The low-dose dexamethasone suppression test relies on the concept that the correct dose of dexamethasone will suppress ACTH, and cortisol will release in normal patients while patients with corticotroph adenomas will not suppress below a specified cut off. Raff and Findling noted that because of the significant variability of the biological behavior of corticotroph adenomas, research has shown that neither the overnight 1-mg dexamethasone suppression test nor the two-day low-dose dexamethasone suppression test appears to be reliable using the standard cutoffs for serum cortisol. Thanks for posting this. den
  3. Thanks Mary, With so many board members dealing with recurrences, it is obvious other treatment options are sorely needed. den
  4. Very helpful Mary. Amazing how it all comes down to a disruption of the basic functions when the disease progresses to the point where the average physician can see it. den
  5. Really nice comprehensive article. I appreciated the list of body processes that cortisol is involved in. I do wish the possibility of false negatives on the dex suppression test had been addressed more completely. Thanks for posting this. den
  6. Thank you Mary, thank you Robin. This looks like one I will keep for reference. Wonder how resistant endo's will respond to this info. It may be especially helpful to me in the next few weeks with an appointment coming up for my MIL. I noticed on page 17 of the article it mentions individuals with osteo and compression fractures as patients where Cushing's should be considered. MIL has severe and progressive osteo with two compression fractures despite aggressive treatment (GH injections, Intravenous Zoledronic Acid, major Vit D replacement). I noticed on her MRI's she has a very distinctive fat pad at the base of her neck not sure yet if it might be related to steroid injections in her back for pain but she has had the "hump" for as long as I can remember. I just thought it was perhaps poor posture over the years. I have been wondering how I could address the possibility with her new osteo doctor in a couple of weeks and this article makes it a straight shot to get it on the table. This along with some info that JudyC brought to my attention about a possible connection between PTH and cortisol should at least get the docs attention. Thanks again, den
  7. Hi Mary, I finally got to watch the video. Very, very interesting. It actually was not too bad but I did get that weird "hair on the back of my neck standing up" kind of feeling. I notice he mentioned that skull base neurosurgeons were probably the rarest of a rare breed. I guess no one on the board here looking for an experienced pit surgeon would argue that point. Thanks for the info. den
  8. Hi Trish, If you check the path for biosynthesis in the adrenals it doesn't look like dheas comes before cortisol so might not directly affect cortisol but it might increase testosterone and estradiol which lay further down the path. In general might confuse the overall picture of what is going on in the adrenals. Especially if there is a question about any adrenal enzyme blocks or malfunctions. Nice little adrenal biosynthesis chart at the following site http://images.google.com/imgres?imgurl=htt...l%3Den%26sa%3DN den
  9. Hi Mary, I appreciate your posting this. It gives patients a heads up on info that doctors are looking at and if doctors don't make it all the way through the article to the concluding comments they might determine that just a few tests will satisfy their responsibility to their patients. Forewarned is forearmed more or less and I did notice that the researchers in the last sentences of their conclusions point out that while... "Patients with concordant normal results should not undergo further evaluation. We recommend additional testing in patients with (a) discordant results, normal responses suspected of cyclic hypercortisolism, or © initially normal responses who accumulate additional features over time." I would hope that their definition of discordant would at least include variations in diurnal cycles as evidenced through testing and low results in the face of multiple symptoms. I appreciated that suspicion of cyclic hypercortisolism was mentioned as a trigger for additional investigation and I have noticed that the cyclic experts will send patients home when the laboratory evidence is insufficient to move toward treatment to wait for either a progression of the disease to rear its ugly head or a sufficiently high cycle that will reveal itself on lab findings. Sincerely, den
  10. Sounds like it might be another tool. Just wondering about the "rate limiting" and the reduction in cholesterol...wonder if that means it affects adrenal biosynthesis on the top side at the beginning of the chain. that would be great if it would inhibit the other adrenal hormone (testosterone and others) excesses as well. Wonder how you would dose someone that has cyclical patterns though. Might a low go really low? I guess they will figure all that out or let Dr. F do it later. den
  11. Sounds like it might be another tool. Just wondering about the "rate limiting" and the reduction in cholesterol...wonder if that means it affects adrenal biosynthesis on the top side at the beginning of the chain. that would be great if it would inhibit the other adrenal hormone (testosterone and others) excesses as well. Wonder how you would dose someone that has cyclical patterns though. Might a low go really low? I guess they will figure all that out or let Dr. F do it later. den
  12. Ouch Mary, this one makes my brain hurt, lot of that going on lately. Hope I am getting the gist of this. I think this actually might be pretty significant. A couple of years ago when I first started looking for possible connections to family anomalies one of the first roadblocks I encountered was that there was very little established verification of an interconnect between the adrenal cortex and adrenal medula. Simultaneous problems in both areas in one person were just rarely seen or perhaps identified. At that point I was only able to come up with a couple of weird cases, usually related to anatomical malformations associated with CAH, so far our family is negative for that. Yet the symptoms that were coming up were seemly more consistent with something awry in the medulla. We do have the elevated DHEAS that shows up on bloodwork. It might account for the possible involvement of the medulla as a side effect to over production in the cortex. Can't quite make it out but looks like maybe more than one this has to be off. It might help account for some of the swings in blood pressure(? maybe) that some of the cyclers come up against. This is one of those that will have to swim around a bit before it sinks in. den
  13. Thanks for the heads up on this Mary. I am looking forward to seeing it. den Did not see the info about which station might be airing it nationally. Perhaps it is an inhouse broadcast. In that case hope it shows up online maybe.
  14. Interesting Robin. I look at people in the news all the time now and think...I wonder?? I also remember there was speculation at one time that Lincoln might have had Marfan's (sp?) I am probably just way to aware of this stuff but I don't think any of it is nearly as rare as the medical profession seems to think it is. den
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