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Everything posted by denney

  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
  15. Sounds like he was a seat- of -the -pants kind of researcher. Probably be buried in paperwork and government safety standards today. Liked the bit about the cigar / blue haze. I had a grandfather like that, only he was a mechanic, and he was soaking a carburetor in a vat of gasoline at the time. Aah...Good times... den
  16. Hi Mary, I believe that PDE11A is the gene that is involved in the problems that Jackie's daughters are dealing with, I noticed Stratakis is involved. I knew that drug companies had already discovered that producing drugs that inhibit phosphodiesterase (similar to the way the defect itself works) was profitable so I am glad to see that they are investigating ways to replace or induce or otherwise work around the missing enzyme. This would be a good thing for those with the defect because it not only affects the adrenals in the formation of nodules but makes them susceptible to other endocrine tumors as well. The part of the info that mentions "carriers of PDE11A sequence variants that are frequent in the population" is consistent with other information that I have come across. It makes you realize that alot of people are already or will be dealing with this, they are just not being diagnosed. If pharmaceutical companies decide to get involved, I suspect part of the reason might be because they believe there are enough people suffering with this to make it profitable. Thanks for the update. den
  17. Mary, Thanks so much for this. My dad is being evaluated again for the abnormality that has shown up in his pituitary. There is some suspicion that the mass effect is causing him to lose his vision. Hopefully, the neurologist will have some answers at Dad's appointment this week. I have been trying to think of which way to go on this if they determine that is the problem. His overall health is no longer good and in our area there are no surgeons with sufficient experience to trust to send in that close to the optic nerve. Also, if we travel and there are complications, how do I get him back to the surgeon to fix it? So, I will follow up on the stereotactic radiosurgery (SRS) angle to see if there are treatment centers that might be doable. It looks like the fractionated radiotherapy (FRT) might take a while to see results, he is 76. He is already hypopit on a number of hormones, so I don't think preserving pit function is necessarily at the top of the list as far as decision making. Thanks again for bringing this up.. Sincerely, den
  18. Wouldn't it be nice if the medical community decided it was better to take the little monsters out preemptively rather than risk the possibility of apoplexy. sigh... den
  19. Hi Mary, I know the point of this research is to confirm the utility and usefulness of salivary tests, it is good to know that at least in this scenario the salivary and serum values correlated, but something else came to my mind as well. I recently ask a doctor if my elevated UFC's could be related to something other than a tumor (although I have those as well), perhaps some type of inflammatory process and he said no. When I read this I didn't get the impression that suspicion of endocrine problems was part of the criteria for testing, just that the patient had to be critically ill for whatever reason. It doesn't seem to me to be a huge reach to conclude that cortisol is part of the body's response to critical illness. I think that is a given. But, it might explain why sometimes it is so difficult to hang the hypercortisolism on a tumor. den
  20. Mary, This sounds like good news. I have not been in the situation described but I can imagine it would be frustrating to go through the pit surgery and then find out treatment options were limited because of concerns that GH therapy would be detrimental. Any chance that any of this research would filter over into allowing GH replacement in individuals with a history of cancer? Thanks den
  21. Does this make the argument for GH replacement in Adults with GHD more strong, because of the link to related factors. Also, might low abnormally low HDL be linked up with GHD? and elevated triglycerides the same? Thanks Mary, for making me think....Although you have no idea how stressful that is for me den
  22. Thanks for the article Mary, Because of living through the end stages of damage from diabetes with my mom and sister I am always on the alert to watch for this type of info. My hubby is showing signs of elevated sugar (prediabetic) despite regular exercise and cutting out carbs. He has always been fit and athletic so this really took me by surprise. He is currently on metformin. I noticed that metformin RR improved beta-cell function. which is good news because I am very concerned about him being on this particular med but afraid for him not to be. Susan, I am very appreciative of your experience and observations that you share, and especially the good results that you have been able to get from changes in diet and livestyle. You have genuinely motivated me to not just accept type 2 as inevitable for myself. The lack of its effect on insulin sensitivity was disappointing but perhaps (always looking for the hopeful) in individuals where the elevated insulin levels are not as long standing it is not the issue it becomes once the disease is full blown and entrenched. Am I being naive? or just uninformed? den
  23. Hi Jackie, Interesting article on your family...Absolutely, totally over my head. Wonder if the Phosphodiesterase enzyme mentioned is in any way related to the phoshatidylserine supplement that comes up on the boards occasionally related to cortisol levels? I am thinking the PDE11A identifies the location on chromosome 2.(?maybe). I hope that puts your girls and their dad in the clear for any of related Carney things that might show up because of related abnormalities on chromosome 17. What they are dealing with is harsh enough. Thanks. I am going to have another go at the article after I coffee-up..may have to perk an urn full. den
  24. Hi Gracie, Thanks for posting this. I think chromosome 17 has been held up as the location for the abnormality that reveals in cases of PRKAR1A (regulatory subunit of protein kinase A (PKA) type 1 alpha subunit) gene related to primary pigmented micronodular hyperplasia and Carney complex (17q22-24). That info has been out there a while I think so the 2006 info must be out of a different location on Chromosome 17. Chromosome 17 has also been implicated in the abnormality found in patients with Neurofibromatosis 1 which has also been linked to locations on or near band 17q11.2. NF1 or neurofibromatosis has been linked to Cushing's. So chromosome 17 may be a culprit in more than one reason for Cushings. Hmmm... den
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