Re: Does anyone have experience, opinions or advice on Adrenal Vein Sampling?

[Guest guest]

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.

> >

>

[Guest guest]

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.

> >

>

[Guest guest]

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.

> > >

> >

>

[Guest guest]

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.

> > > >

> > >

> >

>

[Guest guest]

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.

> > > > >

> > > >

> > >

> >

>