Re: JC at NIH - Verdict

[Guest guest]

I think you were hoping for surgery right? I'm sorry if you were. Why are you not a candidate for surgery, was there too much aldosterone in the left adrenal too?What is OSA? VirginiaSent from my iPhone On May 8, 2012, at 12:39 PM, " " <jclark24p@...> wrote:

I received the verdict from NIH last night. She reported that all suppression tests came back normal with a "mild overproduction of Cortisol". They suggested I might want to repeat the DEX suppression test again in 5 years. At this point they are attributing the Cortisol issue to OSA.

Although the AVS showed that the dominant gland is on the right side they are not recommending surgery and I will be starting Eplerenone as soon as I touch base with Dr. Webster. I have sent a request for all my records.

….

[Guest guest]

So do you have PA or not?

Phyllis

On 5/8/2012 1:39 PM, wrote:

I received the verdict from NIH last night. She reported

that all suppression tests came back normal with a "mild

overproduction of Cortisol". They suggested I might want

to repeat the DEX suppression test again in 5 years. At

this point they are attributing the Cortisol issue to OSA.

Although the AVS showed that the dominant gland is on the

right side they are not recommending surgery and I will be

starting Eplerenone as soon as I touch base with Dr.

Webster. I have sent a request for all my records.

….

[Guest guest]

OSA = Obstructive Sleep Aepna

I was looking for the correct answer! I did not talk with my attending

physician so we did not discuss it. At least four endo's get together and

discuss and come up with recommendation. I will wait until I get the results

before I discuss with them.

>

> > I received the verdict from NIH last night. She reported that all

suppression tests came back normal with a " mild overproduction of Cortisol " .

They suggested I might want to repeat the DEX suppression test again in 5 years.

At this point they are attributing the Cortisol issue to OSA.

> >

> > Although the AVS showed that the dominant gland is on the right side they

are not recommending surgery and I will be starting Eplerenone as soon as I

touch base with Dr. Webster. I have sent a request for all my records.

> >

> > ….

> >

> >

>

[Guest guest]

But were both sides up a bit or is the bump on the other side? So you have early PA still in the suppressible stage? How else do they explain a low renin but not a low aldo. Any way share numbers if and when you can.CE Grim MDOn May 8, 2012, at 1:06 PM, Virginia Wall wrote: I think you were hoping for surgery right? I'm sorry if you were. Why are you not a candidate for surgery, was there too much aldosterone in the left adrenal too?What is OSA? VirginiaSent from my iPhone On May 8, 2012, at 12:39 PM, " " <jclark24p@...> wrote: I received the verdict from NIH last night. She reported that all suppression tests came back normal with a "mild overproduction of Cortisol". They suggested I might want to repeat the DEX suppression test again in 5 years. At this point they are attributing the Cortisol issue to OSA. Although the AVS showed that the dominant gland is on the right side they are not recommending surgery and I will be starting Eplerenone as soon as I touch base with Dr. Webster. I have sent a request for all my records. ….

[Guest guest]

Sounds like a good plan. How is BP holding now? If doing well and other Sx better would start epler at the same dose that controlled things before realizing that that will be about 1/2 the effective dose of spiro. Then work up. It may be a problem getting eplere in VA. Hopefully not. The fact that it controlled BP etc as well as or better than what you were on before and you developed gyneco should be enough to get it for you. CE Grim MDOn May 8, 2012, at 12:39 PM, wrote: I received the verdict from NIH last night. She reported that all suppression tests came back normal with a "mild overproduction of Cortisol". They suggested I might want to repeat the DEX suppression test again in 5 years. At this point they are attributing the Cortisol issue to OSA. Although the AVS showed that the dominant gland is on the right side they are not recommending surgery and I will be starting Eplerenone as soon as I touch base with Dr. Webster. I have sent a request for all my records. ….

[Guest guest]

, I do not know how do you fell about your verdict but I'll tell you

something to cheer you up:

NIH team is after finding the genetic causes for PA and Dr. Stratakis discovered

the gene for Stratakis-Carney syndrome of familial PA. If these 4 best endo in

the country were not interested in your right adrenal gland it means you have

the " garden variety PA " with APA and there is a long history behind treating

" garden variety PA " with MCRBs like epler/spiro and DASHing (if you can).

I wish you good luck with the epler since you've had such a bad experience on

spiro. And rest assured if epler is not working for you you can consult the NIH

team on other methods for treating you right adrenal gland.

Who knows, maybe in a couple of years the NIH team really gets to the bottom of

PA and discovers a new better way to treat this " beast " .

Thank you for keeping us informed!

tiu

>

> OSA = Obstructive Sleep Aepna

>

> I was looking for the correct answer! I did not talk with my attending

physician so we did not discuss it. At least four endo's get together and

discuss and come up with recommendation. I will wait until I get the results

before I discuss with them.

>

>

[Guest guest]

Right surprised they did not "want his gland" but prob have very specific selection criteria so not in their sights at this time. CE Grim MDOn May 8, 2012, at 4:45 PM, lvasiliu@... wrote: , I do not know how do you fell about your verdict but I'll tell you something to cheer you up: NIH team is after finding the genetic causes for PA and Dr. Stratakis discovered the gene for Stratakis-Carney syndrome of familial PA. If these 4 best endo in the country were not interested in your right adrenal gland it means you have the "garden variety PA" with APA and there is a long history behind treating "garden variety PA" with MCRBs like epler/spiro and DASHing (if you can). I wish you good luck with the epler since you've had such a bad experience on spiro. And rest assured if epler is not working for you you can consult the NIH team on other methods for treating you right adrenal gland. Who knows, maybe in a couple of years the NIH team really gets to the bottom of PA and discovers a new better way to treat this "beast". Thank you for keeping us informed! tiu > > OSA = Obstructive Sleep Aepna > > I was looking for the correct answer! I did not talk with my attending physician so we did not discuss it. At least four endo's get together and discuss and come up with recommendation. I will wait until I get the results before I discuss with them. > >

[Guest guest]

Dr. Grim, I have a theory why they didn't want to take my right adrenal but

since I wasn't in the final meeting, it is only theory. On April 21st I got

this message from my attending physician, " We can find out if the adenoma

harbors the mutation after we take the right adrenal out. Your AVS showed that

the dominant gland is on the right side, did Dr El-Maouche contact you? I am out

of town, coming back on 4/30. "

Thanks

Dr Moraitis

From that I presumed they were going to remove the right so I was quite

surprised when they decided not to. I thought about it quite a bit and wonder

if there is something else going on that made them want to take a " wait-n-see "

attitude.

1) They said from the start the saw something in the left that caught their

attention. Dr. Moraitis spent some time showing and explaining the scan but

quite honestly it " was over my head " !

2) Most if not all studies recommend removal of functioning adenomas yet they

didn't even offer that option. Have I suddenly become a poor candidate for

surgery? Are they still considering me as a candidate for a familial form of

PA,FM-III (an open question). If they come up with a soultion they will need

some test subjects!

3) They recommended a follow-up DEX suppression test in 5 years. Is that

normal? If I assume they still think there might be something going on on the

left side would that be a reason? If that is a possibility and we removed the

right today and then found a cortisol problem in the left 5 years from now where

would I be? (You say NO adrenals, hmmm, might be better to have a right adrenal

with a bump given those options!) A smart doctor once told me to " Avoid the

removal of both like the plague! "

4) I'm just starting to look at cortisol and OSA and am wondering why that issue

just came up. Not questioning it but curious. " CONCLUSIONS: Untreated compared

to treated OSA is associated with marked disturbances in ACTH and cortisol

secretory dynamics, resulting in prolonged tissue exposure to disordered,

elevated hormone levels. "

(source: http://www.ncbi.nlm.nih.gov/pubmed/19820009 )

Is it considered untreated if I am on a bi-pap machine 7-8 hrs/night?

So while I have one answer, I consider it only one chapter and the " research "

has just started to find the " Answer " ! Stay Tuned!

.....

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> > > OSA = Obstructive Sleep Aepna

> > >

> > > I was looking for the correct answer! I did not talk with my

> > attending physician so we did not discuss it. At least four endo's

> > get together and discuss and come up with recommendation. I will

> > wait until I get the results before I discuss with them.

> > >

> > >

> >

> >

>

[Guest guest]

According to what I just read - the treatment referred to in the study was

cpap/bipap - now perhaps I am wrong but it appears you are in the " treated "

group

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> > > > OSA = Obstructive Sleep Aepna

> > > >

> > > > I was looking for the correct answer! I did not talk with my

> > > attending physician so we did not discuss it. At least four endo's

> > > get together and discuss and come up with recommendation. I will

> > > wait until I get the results before I discuss with them.

> > > >

> > > >

> > >

> > >

> >

>

[Guest guest]

Thanks tiu,

I am aware of Dr. Stratakis' work in the S-C Syndrome, in fact Dr. Moraitis and I discussed it a little and I used their pubmed report to address what they are currently working on in the PA area. I'm pretty sure I know where they are zeroing in, check this out:

KCNJ5 mutations in the National Institutes of Health cohort of patients with primary hyperaldosteronism: an infrequent genetic cause of Conn's syndrome.

Source: http://www.ncbi.nlm.nih.gov/pubmed/22323562

I'm optomistic I will have good luck with Eplerenone, I would still be on Spironolactone if it wasn't for the androgen and gynecomastia issues. I didn't go to Eplerenone because I was sick of guessing and needed to check the familiar portion. Besides, where else can you get good testing and excellent food for 14 days for $350! And make many new friends to boot!

> >> > OSA = Obstructive Sleep Aepna> > > > I was looking for the correct answer! I did not talk with my attending physician so we did not discuss it. At least four endo's get together and discuss and come up with recommendation. I will wait until I get the results before I discuss with them.> > > >>

[Guest guest]

It has a memory card they load down once in a while. I can also read out info

on a display screen. (3168 therapy hrs, 387 days > 4, 30 day ave 7.36. I think

I am in compliance!) BTW, this is my 3d bi-pap machine since 2002!

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> > > > > > OSA = Obstructive Sleep Aepna

> > > > > >

> > > > > > I was looking for the correct answer! I did not talk with my

> > > > > attending physician so we did not discuss it. At least four

> > endo's

> > > > > get together and discuss and come up with recommendation. I will

> > > > > wait until I get the results before I discuss with them.

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