Re: NIH clinical Study

[Guest guest]

I presume you are talking about protocol 00-CH-0160 and you spoke with Dr.

Lyssikatos. It is quite an experience in a hospital like you have likely never

experienced. I was in a 12 day program and there are a lot of tests (being

retired I took the casual route!)

They do have wifi and you should sign up the day before you go, they will send

you package that explains it but it takes half day if you don't. My room had

computer access so I didn't bother to get my laptop out!

Tests: 24 hr urine every day, blood draws 6am, saline supp, Cortisol & ACTH

midnight & 8am., OGTT, low dex & high dex, CT adrenals, US kidneys, carotids,

cardiac echo, AVS and maybe a few more! They keep you busy but there is times

while you are being tested that you can certainly use computer (like the two

day dex tests require samples every 6 hours) The testing is explained here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057029/pdf/IJHT2011-624691.pdf

(Dr. Moraitis was my Attending Physician.)

http://www.cc.nih.gov/index.html Will give you a lot of info including the PTN

handbook. Let me know if I missed anything.

.....

>

> I e-mailed Dr. Stratakis at the NIH about participating in the his Clinical

trail today. He responded within less than two hours later stating that one of

his associates would contact me about participation. The associate, also an

MD, called me a little after 6-pm and we discussed what was involved and the

additional information they needed. The Dr. I spoke with was very positive

about my chances of being included in the trial.

>

> I'm a three hour drive from Bethesda (non rush hour) so getting there is not a

big issue. I know there others here who have been in this program, and

wondered if you could comment on what its like in the center for 7 days or more.

How busy are you? Most importantly can you take a laptop and do they have WIFI?

>

> Mike

>

> Me: Caucasian, male 51 with 1.0 and 1.3 cm adrenal adenoma left side;

Diabetic Type II, OSA on cpap; Spirnolactone 25 mg, insulin 60 units x2;

janumet 50/1000 x 2; lisinopril, diovan, coreg cr, amlopidine. Started Dashing

recenlty, still having issues with BP.

>

[Guest guest]

I think we have or will have a file on NIH experiences. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn May 10, 2012, at 21:57, ww_engineer <mfaeth01@...> wrote:

I e-mailed Dr. Stratakis at the NIH about participating in the his Clinical trail today. He responded within less than two hours later stating that one of his associates would contact me about participation. The associate, also an MD, called me a little after 6-pm and we discussed what was involved and the additional information they needed. The Dr. I spoke with was very positive about my chances of being included in the trial.

I'm a three hour drive from Bethesda (non rush hour) so getting there is not a big issue. I know there others here who have been in this program, and wondered if you could comment on what its like in the center for 7 days or more. How busy are you? Most importantly can you take a laptop and do they have WIFI?

Mike

Me: Caucasian, male 51 with 1.0 and 1.3 cm adrenal adenoma left side; Diabetic Type II, OSA on cpap; Spirnolactone 25 mg, insulin 60 units x2; janumet 50/1000 x 2; lisinopril, diovan, coreg cr, amlopidine. Started Dashing recenlty, still having issues with BP.

[Guest guest]

I am currently at NIH, in the study/protocol with Stratakis, my attending,

Moriatis, my doc, Condarco, my fellow, Lyssikatos, my

schedular/coordinator/answer the phone doc. I am here for my second/follow up

stay. I have been here 9 days, go home Monday. Last time was 10 days. First

time, much busier, more serial tests, bloodwork and AVS. This time, checking

cortisol mostly, less blood draws, more urine tests, always pee in jugs here

24/7. I think it's great here. Best hospital I've ever been in. Nursing care

and docs second to none. Relaxation therapy, message therapy, library, food

courts, ultrasound IV people. Plus, the best part is they find out what's gong

on, they explain it all to you, answer all your questions. You can go to the

NIH website and check out Stratakis and Moriatis' grand rounds lecture. You can

attend Wed grand round lectures. I did. They are great docs, a great team here,

they do labs right and it all gets done here. Soo much easier than outpatient.

Try to get a renin test done at Lab CorP. If they don't ice it immediately,

renin detioriates....they never iced mine. NIH look at collateral damage to the

heart, to the bones, to coratid arteries. I've had a cat scan with contrast,

and echocardiagram, a cardiac calcium scan, a dexa bone scan, kidney and adrenal

ultrasound, EKG, glucose tolerance test, Saline supression test, ACTH stim

testing, Aldosterone, Renin, AcTH, cortisol, dexamethasone supression tests of

all kinds, low dose, high dose, liddles, and more, AVS, coratid artery

ultrasound, so many 24 hour urine tests, I lost count, and I am sure more, but

that's what I can think of now...

I have not used the computer in the room, but always use my laptop with their

wifi. It took me a day to get the pass for it once I got here. You can apply

to get one early and have the code faster. I didn't care, didn't use the

computer till I got it. Personal TV by your bed is also a screen for the

computer and a DVD player. Movies are in the library. I personally, get a lot

of work done, I don't watch much TV, am not on computer most of the time, but

reading, and I go off the unit to do stuff in the building. I've opened up a

credit union account, I've sat in the chairs in the atrium eating muffins from

Le

Bon Pain, I've shopped in the gift shops, I've had massages, sat in the ever so

cool relaxation recliners and meditated with one of the Chaplains in the

meditation room. I go to the medical bookstore, I go to the food court, and I

go to the library. Tonight, I rented a CD player, and some guided imagery

tapes. I don't have time or energy to do this stuff at home, so I take

advantage while I'm here. Did my laundry today too.

I had a long chat with Stratakis yesterday, a few very long chats with Moriatis,

and I see Condarco daily and Lyssikatos a lot....I get copies of my labs, most

are done the next day, then I ask for copies, they give them to me, I then ask

my docs when they come in, what they mean...they tell me as we go. I make long

lists of questions and they answer all of them. Some of my tests won't come

back until a week after discharge, and they will call or email me with those

results and recommendations. I went to medical records today and asked for all

my records and copies of scans and all for March, April and May...

This study, these docs and nurses have been a God send to me. I know all about

the RAS system, cortisol, subclinical cushings, BAH, the genes and enzymes, and

how all of it applies to me. I no longer have to search and wonder and try to

figure it all out. I know what I have and how to deal with it. I know the

parameters of what they know now and what they don't know yet. I know I thrive

on information and understanding and I have that here.

So, Mike, strap on, you'll be glad you did. Too bad you are on Spiro, you'll

have to go off it and then go after a few weeks. I am sure Lyssikatos explained

that all to you. Good for you, I am glad to hear you took the initiative to

take care of yourself and contact NIH.

By the way, I learned a couple days ago that Moriatis consulted on my case with

Young at Mayo, who concurred and confirmed Moriatis' findings and

conclusions. I told him that my Doc 3 endo who lost my urine, did my aldo renin

supine testing wrong, saline supression test wrong too also consulted with

Young at Mayo. Young then, looked at my chart with the piss poor lab

work, and declared I din't have PA. Doc 3, due to that consult suggested I

continue to persue the blood pressure issue as primary and not secondary to

aldosterone issues. This is most strange to me. I clearly had lousy testing.

the NIH people figured that out and repeated it all and more. Why couldn't he

see that? I do have PA, and since the MCB's, my bp and k are fine. Renin still

low, cortisol still a bit high and he ruled out the entire RAS issues. My

opinion, not a good consult. cest la vie....

>

> I e-mailed Dr. Stratakis at the NIH about participating in the his Clinical

trail today. He responded within less than two hours later stating that one of

his associates would contact me about participation. The associate, also an

MD, called me a little after 6-pm and we discussed what was involved and the

additional information they needed. The Dr. I spoke with was very positive

about my chances of being included in the trial.

>

> I'm a three hour drive from Bethesda (non rush hour) so getting there is not a

big issue. I know there others here who have been in this program, and

wondered if you could comment on what its like in the center for 7 days or more.

How busy are you? Most importantly can you take a laptop and do they have WIFI?

>

> Mike

>

> Me: Caucasian, male 51 with 1.0 and 1.3 cm adrenal adenoma left side;

Diabetic Type II, OSA on cpap; Spirnolactone 25 mg, insulin 60 units x2;

janumet 50/1000 x 2; lisinopril, diovan, coreg cr, amlopidine. Started Dashing

recenlty, still having issues with BP.

>

[Guest guest]

Maggie, thank you for the update and good to hear you are finally getting

somewhere with all of these!

BTW, on your cortisol issue did they concluded anything? Or is a wait-and-see

approach to be re-evaluated after more time on Epler?

From what I've read, bilateral issues with both aldo & cortisol could

potentially be caused by pituitary or ectopic ACTH tumors and that

bilateral adrenal nodules develops as a result of a chronic ACTH stress at the

adrenals (studies showed that ~18% of Cushing's disease still DEX suppressed

Cortisol below the test cutoff for the disease). Did they also looked at

pituitary?

This would be another good question to ask them while there (since both you and

seem to have some cortisol issue).

Good luck and glad to hear things are progressing toward a cure or treatment

plan for you!

tiu

[Guest guest]

Excellent report. Sounds like they are doing what I did before retiring. Great fun and excitement. Indeed will inquire is the Greek mafia there ever has senior fellow positions. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn May 11, 2012, at 23:50, maggiekat7 <ljurkovic@...> wrote:

I am currently at NIH, in the study/protocol with Stratakis, my attending, Moriatis, my doc, Condarco, my fellow, Lyssikatos, my schedular/coordinator/answer the phone doc. I am here for my second/follow up stay. I have been here 9 days, go home Monday. Last time was 10 days. First time, much busier, more serial tests, bloodwork and AVS. This time, checking cortisol mostly, less blood draws, more urine tests, always pee in jugs here 24/7. I think it's great here. Best hospital I've ever been in. Nursing care and docs second to none. Relaxation therapy, message therapy, library, food courts, ultrasound IV people. Plus, the best part is they find out what's gong on, they explain it all to you, answer all your questions. You can go to the NIH website and check out Stratakis and Moriatis' grand rounds lecture. You can attend Wed grand round lectures. I did. They are great docs, a great team here, they do labs right and it all gets done here. Soo much easier than outpatient.

Try to get a renin test done at Lab CorP. If they don't ice it immediately, renin detioriates....they never iced mine. NIH look at collateral damage to the heart, to the bones, to coratid arteries. I've had a cat scan with contrast, and echocardiagram, a cardiac calcium scan, a dexa bone scan, kidney and adrenal ultrasound, EKG, glucose tolerance test, Saline supression test, ACTH stim testing, Aldosterone, Renin, AcTH, cortisol, dexamethasone supression tests of all kinds, low dose, high dose, liddles, and more, AVS, coratid artery ultrasound, so many 24 hour urine tests, I lost count, and I am sure more, but that's what I can think of now...

I have not used the computer in the room, but always use my laptop with their wifi. It took me a day to get the pass for it once I got here. You can apply to get one early and have the code faster. I didn't care, didn't use the computer till I got it. Personal TV by your bed is also a screen for the computer and a DVD player. Movies are in the library. I personally, get a lot of work done, I don't watch much TV, am not on computer most of the time, but reading, and I go off the unit to do stuff in the building. I've opened up a credit union account, I've sat in the chairs in the atrium eating muffins from Le

Bon Pain, I've shopped in the gift shops, I've had massages, sat in the ever so cool relaxation recliners and meditated with one of the Chaplains in the meditation room. I go to the medical bookstore, I go to the food court, and I go to the library. Tonight, I rented a CD player, and some guided imagery tapes. I don't have time or energy to do this stuff at home, so I take advantage while I'm here. Did my laundry today too.

I had a long chat with Stratakis yesterday, a few very long chats with Moriatis, and I see Condarco daily and Lyssikatos a lot....I get copies of my labs, most are done the next day, then I ask for copies, they give them to me, I then ask my docs when they come in, what they mean...they tell me as we go. I make long lists of questions and they answer all of them. Some of my tests won't come back until a week after discharge, and they will call or email me with those results and recommendations. I went to medical records today and asked for all my records and copies of scans and all for March, April and May...

This study, these docs and nurses have been a God send to me. I know all about the RAS system, cortisol, subclinical cushings, BAH, the genes and enzymes, and how all of it applies to me. I no longer have to search and wonder and try to figure it all out. I know what I have and how to deal with it. I know the parameters of what they know now and what they don't know yet. I know I thrive on information and understanding and I have that here.

So, Mike, strap on, you'll be glad you did. Too bad you are on Spiro, you'll have to go off it and then go after a few weeks. I am sure Lyssikatos explained that all to you. Good for you, I am glad to hear you took the initiative to take care of yourself and contact NIH.

By the way, I learned a couple days ago that Moriatis consulted on my case with Young at Mayo, who concurred and confirmed Moriatis' findings and conclusions. I told him that my Doc 3 endo who lost my urine, did my aldo renin supine testing wrong, saline supression test wrong too also consulted with Young at Mayo. Young then, looked at my chart with the piss poor lab work, and declared I din't have PA. Doc 3, due to that consult suggested I continue to persue the blood pressure issue as primary and not secondary to aldosterone issues. This is most strange to me. I clearly had lousy testing. the NIH people figured that out and repeated it all and more. Why couldn't he see that? I do have PA, and since the MCB's, my bp and k are fine. Renin still low, cortisol still a bit high and he ruled out the entire RAS issues. My opinion, not a good consult. cest la vie....

>

> I e-mailed Dr. Stratakis at the NIH about participating in the his Clinical trail today. He responded within less than two hours later stating that one of his associates would contact me about participation. The associate, also an MD, called me a little after 6-pm and we discussed what was involved and the additional information they needed. The Dr. I spoke with was very positive about my chances of being included in the trial.

>

> I'm a three hour drive from Bethesda (non rush hour) so getting there is not a big issue. I know there others here who have been in this program, and wondered if you could comment on what its like in the center for 7 days or more. How busy are you? Most importantly can you take a laptop and do they have WIFI?

>

> Mike

>

> Me: Caucasian, male 51 with 1.0 and 1.3 cm adrenal adenoma left side; Diabetic Type II, OSA on cpap; Spirnolactone 25 mg, insulin 60 units x2; janumet 50/1000 x 2; lisinopril, diovan, coreg cr, amlopidine. Started Dashing recenlty, still having issues with BP.

>

[Guest guest]

Please put this in your story folder and in our NIH experiences. Not the first time here Dr Young has not seen the light. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn May 11, 2012, at 23:50, maggiekat7 <ljurkovic@...> wrote:

I am currently at NIH, in the study/protocol with Stratakis, my attending, Moriatis, my doc, Condarco, my fellow, Lyssikatos, my schedular/coordinator/answer the phone doc. I am here for my second/follow up stay. I have been here 9 days, go home Monday. Last time was 10 days. First time, much busier, more serial tests, bloodwork and AVS. This time, checking cortisol mostly, less blood draws, more urine tests, always pee in jugs here 24/7. I think it's great here. Best hospital I've ever been in. Nursing care and docs second to none. Relaxation therapy, message therapy, library, food courts, ultrasound IV people. Plus, the best part is they find out what's gong on, they explain it all to you, answer all your questions. You can go to the NIH website and check out Stratakis and Moriatis' grand rounds lecture. You can attend Wed grand round lectures. I did. They are great docs, a great team here, they do labs right and it all gets done here. Soo much easier than outpatient.

Try to get a renin test done at Lab CorP. If they don't ice it immediately, renin detioriates....they never iced mine. NIH look at collateral damage to the heart, to the bones, to coratid arteries. I've had a cat scan with contrast, and echocardiagram, a cardiac calcium scan, a dexa bone scan, kidney and adrenal ultrasound, EKG, glucose tolerance test, Saline supression test, ACTH stim testing, Aldosterone, Renin, AcTH, cortisol, dexamethasone supression tests of all kinds, low dose, high dose, liddles, and more, AVS, coratid artery ultrasound, so many 24 hour urine tests, I lost count, and I am sure more, but that's what I can think of now...

I have not used the computer in the room, but always use my laptop with their wifi. It took me a day to get the pass for it once I got here. You can apply to get one early and have the code faster. I didn't care, didn't use the computer till I got it. Personal TV by your bed is also a screen for the computer and a DVD player. Movies are in the library. I personally, get a lot of work done, I don't watch much TV, am not on computer most of the time, but reading, and I go off the unit to do stuff in the building. I've opened up a credit union account, I've sat in the chairs in the atrium eating muffins from Le

Bon Pain, I've shopped in the gift shops, I've had massages, sat in the ever so cool relaxation recliners and meditated with one of the Chaplains in the meditation room. I go to the medical bookstore, I go to the food court, and I go to the library. Tonight, I rented a CD player, and some guided imagery tapes. I don't have time or energy to do this stuff at home, so I take advantage while I'm here. Did my laundry today too.

I had a long chat with Stratakis yesterday, a few very long chats with Moriatis, and I see Condarco daily and Lyssikatos a lot....I get copies of my labs, most are done the next day, then I ask for copies, they give them to me, I then ask my docs when they come in, what they mean...they tell me as we go. I make long lists of questions and they answer all of them. Some of my tests won't come back until a week after discharge, and they will call or email me with those results and recommendations. I went to medical records today and asked for all my records and copies of scans and all for March, April and May...

This study, these docs and nurses have been a God send to me. I know all about the RAS system, cortisol, subclinical cushings, BAH, the genes and enzymes, and how all of it applies to me. I no longer have to search and wonder and try to figure it all out. I know what I have and how to deal with it. I know the parameters of what they know now and what they don't know yet. I know I thrive on information and understanding and I have that here.

So, Mike, strap on, you'll be glad you did. Too bad you are on Spiro, you'll have to go off it and then go after a few weeks. I am sure Lyssikatos explained that all to you. Good for you, I am glad to hear you took the initiative to take care of yourself and contact NIH.

By the way, I learned a couple days ago that Moriatis consulted on my case with Young at Mayo, who concurred and confirmed Moriatis' findings and conclusions. I told him that my Doc 3 endo who lost my urine, did my aldo renin supine testing wrong, saline supression test wrong too also consulted with Young at Mayo. Young then, looked at my chart with the piss poor lab work, and declared I din't have PA. Doc 3, due to that consult suggested I continue to persue the blood pressure issue as primary and not secondary to aldosterone issues. This is most strange to me. I clearly had lousy testing. the NIH people figured that out and repeated it all and more. Why couldn't he see that? I do have PA, and since the MCB's, my bp and k are fine. Renin still low, cortisol still a bit high and he ruled out the entire RAS issues. My opinion, not a good consult. cest la vie....

>

> I e-mailed Dr. Stratakis at the NIH about participating in the his Clinical trail today. He responded within less than two hours later stating that one of his associates would contact me about participation. The associate, also an MD, called me a little after 6-pm and we discussed what was involved and the additional information they needed. The Dr. I spoke with was very positive about my chances of being included in the trial.

>

> I'm a three hour drive from Bethesda (non rush hour) so getting there is not a big issue. I know there others here who have been in this program, and wondered if you could comment on what its like in the center for 7 days or more. How busy are you? Most importantly can you take a laptop and do they have WIFI?

>

> Mike

>

> Me: Caucasian, male 51 with 1.0 and 1.3 cm adrenal adenoma left side; Diabetic Type II, OSA on cpap; Spirnolactone 25 mg, insulin 60 units x2; janumet 50/1000 x 2; lisinopril, diovan, coreg cr, amlopidine. Started Dashing recenlty, still having issues with BP.

>

[Guest guest]

Thank you for your concern, and yes, they have evaluated just about every organ

in my body. Pituitary, Parathyroid, Thyroid, among them. And there's blood

tests for ectopic producing tumors that they've done plenty of. Another one

tomorrow morning. Cortisol is coming from adenomas on the adrenals that over

produce cortisol as well as some over producing aldosterone. They know it's

adrenal. Fortunately, at this time, my overproduction is not severe; a more

mild form, called subclinical cushings. Since I have bilateral adenomas and

hyperplasia, and one side overproduces more of one substance than the other; and

the one that oversecretes cortisol is the most diseased on the cat scan, with

larger adenomas, etc., they would likely remove that one first if my aldo wasn't

being controlled well with the MCB meds. So, rather than remove anything, I am

just waiting another year, staying on MCB's and returning for evaluation in a

year. I am glad because removing the " worst " or possible " worst " tumor still

leaves me with one already known diseased gland. And sometimes they don't

really know until they examine the removed gland if it was the right one to

pick. Then, what happens when the other diseased gland gets worse? Don't want

both out. I am visualizing healthy, happy adrenals that are finally getting the

meds they need...maybe try some alternative med for the cortisol. Found several

things that deal with that, when I get results, I will run it by the docs.

One thing I have learned here this time that might be helpful to all of

you...they don't know everything there is to know about all of this. The reason

there is this study is to discover more and answer more questions. They are

still in the discovery process. Therefore all the symptoms, all the " what

happens to bah patients " , is not all that black and white. The nice thing here

is that you can work with your docs to discover and feel like you have someone

to help you.

I have been to the library and found a book on stress and the RAS

response....adrenaline, norephinephrine,dopamine, etc. It's a great read by a

doc here at NIH, called " Adrenaline and the Inner World " by Goldstein. Now, I

think reducing stress could have a powerful impact on the RAS and cortisol

issue. Not done reading though, so jury is still out.

Further, none of the 24 hour urine tests I've done here are complete; so I won't

get results for 10 days or so. Also, the cortisol Littles tests, high dose and

second low dose are not done yet either. I won't really know what the final

opinion is until those are done and they get the 17 hydroxy stuff too. Don't

have bone scan data yet. And other tests are still out. About 10 days. Either

way, though, since there's nothing to do as far as the cortisol, or subclinical

cushings, I wait a year and look at the adrenals again.

I have an incidental finding on my kidney of an AML, that needs to be

ultrasounded every six months now as well.

Got a pass and went to Bethesda downtown today. It was fun, but my feet got hot

and swollen and sore. Is that from the high dose dexamethasone? Never happened

before. I've had the numbness in toes and fingers ever since starting the

epler. Randomly, and annoying. It is a listed side effect of both epler and

spiro. though. Had to be back by 6 to take more dexamethasone, gave us travel

jugs to pee in!

Dr. Grim, got my sodium urine levels...what is the range you like to see to tell

if I am dashing well enough. I know I am not in here, it's not possible. Only

real problem here, I think. You try ordering low sodium anything and you can't

eat. I order a spinach salad every lunch and dinner and try something else, but

pretty much live on spinach salads and blueberry muffins for breakfast. Today,

though, went to a delicious indian buffet.

Oh, and there's a new little greek girl med student who is an understudy of

Moriatis. And my on call dr. for the weekend is a Greek woman too. So, now I

have a total of 5 Greek docs on my team. I feel right at home! (I am half

Greek). Yet another Greek used to be the head of the endocrine dept here, a

Dr. Chrounnos? He is writing a book on stress and the endocrine system.

Well, this dexamethasone is keeping me up again tonight, but I'm getting off

computer, turning off lights and trying to sleep! Kalinichta! (Greek for Good

Night) (I don't write it, only speak it)

>

>

>

>

>

>

> Maggie, thank you for the update and good to hear you are finally getting

somewhere with all of these!

>

> BTW, on your cortisol issue did they concluded anything? Or is a wait-and-see

approach to be re-evaluated after more time on Epler?

>

> From what I've read, bilateral issues with both aldo & cortisol could

> potentially be caused by pituitary or ectopic ACTH tumors and that

> bilateral adrenal nodules develops as a result of a chronic ACTH stress at the

adrenals (studies showed that ~18% of Cushing's disease still DEX suppressed

Cortisol below the test cutoff for the disease). Did they also looked at

pituitary?

>

> This would be another good question to ask them while there (since both you

and seem to have some cortisol issue).

>

> Good luck and glad to hear things are progressing toward a cure or treatment

plan for you!

> tiu

>

[Guest guest]

Indian food is classically very high in salt so curious they are not controlling diet Na and K. But sounds like they are not looking at Aldo this go around. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn May 12, 2012, at 23:28, maggiekat7 <ljurkovic@...> wrote:

Thank you for your concern, and yes, they have evaluated just about every organ in my body. Pituitary, Parathyroid, Thyroid, among them. And there's blood tests for ectopic producing tumors that they've done plenty of. Another one tomorrow morning. Cortisol is coming from adenomas on the adrenals that over produce cortisol as well as some over producing aldosterone. They know it's adrenal. Fortunately, at this time, my overproduction is not severe; a more mild form, called subclinical cushings. Since I have bilateral adenomas and hyperplasia, and one side overproduces more of one substance than the other; and the one that oversecretes cortisol is the most diseased on the cat scan, with larger adenomas, etc., they would likely remove that one first if my aldo wasn't being controlled well with the MCB meds. So, rather than remove anything, I am just waiting another year, staying on MCB's and returning for evaluation in a year. I am glad because removing the "worst" or

possible "worst" tumor still leaves me with one already known diseased gland. And sometimes they don't really know until they examine the removed gland if it was the right one to pick. Then, what happens when the other diseased gland gets worse? Don't want both out. I am visualizing healthy, happy adrenals that are finally getting the meds they need...maybe try some alternative med for the cortisol. Found several things that deal with that, when I get results, I will run it by the docs.

One thing I have learned here this time that might be helpful to all of you...they don't know everything there is to know about all of this. The reason there is this study is to discover more and answer more questions. They are still in the discovery process. Therefore all the symptoms, all the "what happens to bah patients", is not all that black and white. The nice thing here is that you can work with your docs to discover and feel like you have someone to help you.

I have been to the library and found a book on stress and the RAS response....adrenaline, norephinephrine,dopamine, etc. It's a great read by a doc here at NIH, called "Adrenaline and the Inner World" by Goldstein. Now, I think reducing stress could have a powerful impact on the RAS and cortisol issue. Not done reading though, so jury is still out.

Further, none of the 24 hour urine tests I've done here are complete; so I won't get results for 10 days or so. Also, the cortisol Littles tests, high dose and second low dose are not done yet either. I won't really know what the final opinion is until those are done and they get the 17 hydroxy stuff too. Don't have bone scan data yet. And other tests are still out. About 10 days. Either way, though, since there's nothing to do as far as the cortisol, or subclinical cushings, I wait a year and look at the adrenals again.

I have an incidental finding on my kidney of an AML, that needs to be ultrasounded every six months now as well.

Got a pass and went to Bethesda downtown today. It was fun, but my feet got hot and swollen and sore. Is that from the high dose dexamethasone? Never happened before. I've had the numbness in toes and fingers ever since starting the epler. Randomly, and annoying. It is a listed side effect of both epler and spiro. though. Had to be back by 6 to take more dexamethasone, gave us travel jugs to pee in!

Dr. Grim, got my sodium urine levels...what is the range you like to see to tell if I am dashing well enough. I know I am not in here, it's not possible. Only real problem here, I think. You try ordering low sodium anything and you can't eat. I order a spinach salad every lunch and dinner and try something else, but pretty much live on spinach salads and blueberry muffins for breakfast. Today, though, went to a delicious indian buffet.

Oh, and there's a new little greek girl med student who is an understudy of Moriatis. And my on call dr. for the weekend is a Greek woman too. So, now I have a total of 5 Greek docs on my team. I feel right at home! (I am half Greek). Yet another Greek used to be the head of the endocrine dept here, a Dr. Chrounnos? He is writing a book on stress and the endocrine system.

Well, this dexamethasone is keeping me up again tonight, but I'm getting off computer, turning off lights and trying to sleep! Kalinichta! (Greek for Good Night) (I don't write it, only speak it)

>

>

>

>

>

>

> Maggie, thank you for the update and good to hear you are finally getting somewhere with all of these!

>

> BTW, on your cortisol issue did they concluded anything? Or is a wait-and-see approach to be re-evaluated after more time on Epler?

>

> From what I've read, bilateral issues with both aldo & cortisol could

> potentially be caused by pituitary or ectopic ACTH tumors and that

> bilateral adrenal nodules develops as a result of a chronic ACTH stress at the adrenals (studies showed that ~18% of Cushing's disease still DEX suppressed Cortisol below the test cutoff for the disease). Did they also looked at pituitary?

>

> This would be another good question to ask them while there (since both you and seem to have some cortisol issue).

>

> Good luck and glad to hear things are progressing toward a cure or treatment plan for you!

> tiu

>

[Guest guest]

Maggie:

Thank you responding with the very detailed post. Sorry for not responding

sooner, I've been busy trying to get moved into a new house.

I really like that that you can actually talk with the doctors and the keep you

informed. Not knowing whats going on with my health, and having doctors who

don't want to listen really bothers me.

I hope everything works out well for you.

Mike

> >

> > I e-mailed Dr. Stratakis at the NIH about participating in the his Clinical

trail today. He responded within less than two hours later stating that one of

his associates would contact me about participation. The associate, also an

MD, called me a little after 6-pm and we discussed what was involved and the

additional information they needed. The Dr. I spoke with was very positive

about my chances of being included in the trial.

> >

> > I'm a three hour drive from Bethesda (non rush hour) so getting there is not

a big issue. I know there others here who have been in this program, and

wondered if you could comment on what its like in the center for 7 days or more.

How busy are you? Most importantly can you take a laptop and do they have WIFI?

> >

> > Mike

> >

> > Me: Caucasian, male 51 with 1.0 and 1.3 cm adrenal adenoma left side;

Diabetic Type II, OSA on cpap; Spirnolactone 25 mg, insulin 60 units x2;

janumet 50/1000 x 2; lisinopril, diovan, coreg cr, amlopidine. Started Dashing

recenlty, still having issues with BP.

> >

>

[Guest guest]

I had some good news Friday afternoon. Dr. Lyssikatos from the NIH e-mailed and

to let me know they are accepting me into the study. WE also spoke on the phone

later to discuss the schedule.

They are looking at the second or third week of July, since I need to get off

the Spiro for 6 weeks. As I understand the also need to make sure the

radiologist is available for the AVS.

Mike

>

> I e-mailed Dr. Stratakis at the NIH about participating in the his Clinical

trail today. He responded within less than two hours later stating that one of

his associates would contact me about participation. The associate, also an

MD, called me a little after 6-pm and we discussed what was involved and the

additional information they needed. The Dr. I spoke with was very positive

about my chances of being included in the trial.

>

> I'm a three hour drive from Bethesda (non rush hour) so getting there is not a

big issue. I know there others here who have been in this program, and

wondered if you could comment on what its like in the center for 7 days or more.

How busy are you? Most importantly can you take a laptop and do they have WIFI?

>

> Mike

>

> Me: Caucasian, male 51 with 1.0 and 1.3 cm adrenal adenoma left side;

Diabetic Type II, OSA on cpap; Spirnolactone 25 mg, insulin 60 units x2;

janumet 50/1000 x 2; lisinopril, diovan, coreg cr, amlopidine. Started Dashing

recenlty, still having issues with BP.

>

[Guest guest]

Excellent you are now number 3 I think?Would be good for us to build a data base that incorporates their lab results for others to see I would think.CE Grim MDCE Grim MDOn May 20, 2012, at 6:36 PM, ww_engineer wrote: I had some good news Friday afternoon. Dr. Lyssikatos from the NIH e-mailed and to let me know they are accepting me into the study. WE also spoke on the phone later to discuss the schedule. They are looking at the second or third week of July, since I need to get off the Spiro for 6 weeks. As I understand the also need to make sure the radiologist is available for the AVS. Mike > > I e-mailed Dr. Stratakis at the NIH about participating in the his Clinical trail today. He responded within less than two hours later stating that one of his associates would contact me about participation. The associate, also an MD, called me a little after 6-pm and we discussed what was involved and the additional information they needed. The Dr. I spoke with was very positive about my chances of being included in the trial. > > I'm a three hour drive from Bethesda (non rush hour) so getting there is not a big issue. I know there others here who have been in this program, and wondered if you could comment on what its like in the center for 7 days or more. How busy are you? Most importantly can you take a laptop and do they have WIFI? > > Mike > > Me: Caucasian, male 51 with 1.0 and 1.3 cm adrenal adenoma left side; Diabetic Type II, OSA on cpap; Spirnolactone 25 mg, insulin 60 units x2; janumet 50/1000 x 2; lisinopril, diovan, coreg cr, amlopidine. Started Dashing recenlty, still having issues with BP. >

[Guest guest]

That's great! I just got home from my second visit, which was longer than the

first. All blood and urine with only one scan. I am still kind of getting used

to life outside of NIH again. When you are an inpatient for 2 weeks, it is a

bit of a shock to your system to go outside, see the sun, pee in a toilet

instead of a collection thing, eat, cook, etc. I've been back at work a bit,

and am still dragging. I think the dexamethasone kicked me in the butt. I was

on it for days and it really did not agree with me. Otherwise, it's still a

great way to get your tests done and questions answered. I got home and my endo

here sent me a letter of retirement...so I am looking for a new one. Found a

good one at Emory, at least by educational and fellowship and publications

background. We'll see, won't we? She wants to review my records before

scheduling an appt., I think that's a good sign.

> >

> > I e-mailed Dr. Stratakis at the NIH about participating in the his Clinical

trail today. He responded within less than two hours later stating that one of

his associates would contact me about participation. The associate, also an

MD, called me a little after 6-pm and we discussed what was involved and the

additional information they needed. The Dr. I spoke with was very positive

about my chances of being included in the trial.

> >

> > I'm a three hour drive from Bethesda (non rush hour) so getting there is not

a big issue. I know there others here who have been in this program, and

wondered if you could comment on what its like in the center for 7 days or more.

How busy are you? Most importantly can you take a laptop and do they have WIFI?

> >

> > Mike

> >

> > Me: Caucasian, male 51 with 1.0 and 1.3 cm adrenal adenoma left side;

Diabetic Type II, OSA on cpap; Spirnolactone 25 mg, insulin 60 units x2;

janumet 50/1000 x 2; lisinopril, diovan, coreg cr, amlopidine. Started Dashing

recenlty, still having issues with BP.

> >

>