Guest guest Posted April 24, 2012 Report Share Posted April 24, 2012 I may be repeating myself and if I am, sorry! maggiekt is right, the " Yellow Brick Road " is by far the best option! As a backup plan I would print 2 copies of the review article at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057029/pdf/IJHT2011-624691.pdf Dr. Moraitis is Maggie and my doctor and is second to none, IMHO! Dr. Constantine Stratakis is one of the best and probably most current Endos in the world, any doubts? Google his name and happy reading! (yes, he always had that smile on every time I saw him! My first question, is she going to repeat the ARR too? If you are on only Verapamil (slow release) that is good. I would question her if it is not twice daily! I do not know the half-life but they recommend and administer twice daily! Good Luck! > > > > Obviously, we > > >> need to await the final results of my infusion test, and unfortunately > > >> I was 1/2 way through the 4 hour test before they got my initial labs > > >> back that indicated my potassium was very low (2.8) even though we had > > >> it under control (average 3.7) prior to the test...so I may have to > > >> have the infusion test done again. Aaagghhh. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2012 Report Share Posted April 24, 2012 Thanks for the advice and Maggie. If someone was to get accepted into the NIH study (I filled out request for info this evening...thanks for the link) what happens? Do you deal with them through e-mail up front and eventually go there for the testing? Do they become your primary care provider for the PA or do you still work with your local Endocrinologist and just send them copies of reports, etc? Thanks again! From: <jclark24p@...> hyperaldosteronism Sent: Tuesday, April 24, 2012 10:19 PM Subject: Re: Does anyone have experience, opinions or advice on Adrenal Vein Sampling? I may be repeating myself and if I am, sorry! maggiekt is right, the "Yellow Brick Road" is by far the best option! As a backup plan I would print 2 copies of the review article at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057029/pdf/IJHT2011-624691.pdf Dr. Moraitis is Maggie and my doctor and is second to none, IMHO! Dr. Constantine Stratakis is one of the best and probably most current Endos in the world, any doubts? Google his name and happy reading! (yes, he always had that smile on every time I saw him! My first question, is she going to repeat the ARR too? If you are on only Verapamil (slow release) that is good. I would question her if it is not twice daily! I do not know the half-life but they recommend and administer twice daily! Good Luck! > > > > Obviously, we > > >> need to await the final results of my infusion test, and unfortunately > > >> I was 1/2 way through the 4 hour test before they got my initial labs > > >> back that indicated my potassium was very low (2.8) even though we had > > >> it under control (average 3.7) prior to the test...so I may have to > > >> have the infusion test done again. Aaagghhh. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2012 Report Share Posted April 24, 2012 A guy named Dr. Lyssikatos will call you. He's Greek, has a thick accent, but is very bright, knows all about this issue and the protocol, is willing to talk and answer questions. He will ask you questions as well, screen you and then ask you to send medical records. I also mailed him copies of my MRI. He will also ask you to get a letter of referral (from any Dr.). Your records are only for your qualifications into the protocol...they will do all their own testing and repeat anything they don't trust, which is anything they didn't do. When and if you get into the protocol, they will guide you through the process. Basically, they will call and ask you about dates. When you agree on something, they will mail you a packet, with your calendar, details about travel and admission. Then you go, you pay for your transportation, they do the rest. You leave with scripts and discharge orders that require you to follow up with a Dr. If you can't or don't want to continue with your current Drs., they can make referrals for you. They will treat you along with your doctor, but like in my case, they are still primary, calling in scripts and having me return for more evaluation. They contact you via phone and/or email... Dr. Lyssikatos is one of the docs on your team. When you get there, you will have more...a fellow, and attending, etc. For faster admission, call Dr. Lyssikatos. One of the amazing things about NIH is that he answers his phone. You can reach him by calling the NIH main number and asking for the operator, then Dr. Lyssikatos. Let him know that and Maggie referred you. He'll get a kick out of that. Once you are in, you are in for the long haul. Evaluation, treatment and follow ups for as long as necessary. In my case, they said, " forever " . > > > > > > Obviously, we > > > >> need to await the final results of my infusion test, and unfortunately > > > >> I was 1/2 way through the 4 hour test before they got my initial labs > > > >> back that indicated my potassium was very low (2.8) even though we had > > > >> it under control (average 3.7) prior to the test...so I may have to > > > >> have the infusion test done again. Aaagghhh. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2012 Report Share Posted April 25, 2012 I can only add a couple items. If you mention Maggie it might be easier to use her last name (the " J " is silent!) I always thought Dr. Lyssikatos sat in his office waiting for my call, I now know he just carries his phone in his pocket! Great summary Mags, mind if I copy it! > > > > > > > > Obviously, we > > > > >> need to await the final results of my infusion test, and unfortunately > > > > >> I was 1/2 way through the 4 hour test before they got my initial labs > > > > >> back that indicated my potassium was very low (2.8) even though we had > > > > >> it under control (average 3.7) prior to the test...so I may have to > > > > >> have the infusion test done again. Aaagghhh. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2012 Report Share Posted April 27, 2012 Last name not silent, but pronounced like a y...but doesn't matter, it's been butchered as long as I've had it. > > > > > > > > > > Obviously, we > > > > > >> need to await the final results of my infusion test, and unfortunately > > > > > >> I was 1/2 way through the 4 hour test before they got my initial labs > > > > > >> back that indicated my potassium was very low (2.8) even though we had > > > > > >> it under control (average 3.7) prior to the test...so I may have to > > > > > >> have the infusion test done again. Aaagghhh. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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