NIH studies, etc.

[Guest guest]

The study protocol that and I are in is not the only study protocol for

endocrine issues. In fact, the last time I was there for two weeks, my roommate

came in under our protocol, but within a couple of days, they determined that

she no longer qualified due to labs that confirmed her aldosterone levels did

not meet protocol guidelines. In her case, she did not have high aldo, even

though she has a rather large adenoma on one side...they brought in Dr. Merke

(might be spelling her name wrong) and she is like Dr. Stratakis, in charge of a

whole other set of studies; one of which she fit into. She has CAH, which is a

congenital form of adrenal hyperplasia and her symptoms are more of an

underfunctioning adrenal rather than over producing adrenals. And more Cushing

than those of us with mild cushing issues...so if you don't qualify under the

protocol that and I did, then go to NIH search the studies and try the

other's based on their parameters.

Also, in terms of future knowledge about taking one adrenal and disease of the

other one, I know there is literature online about that. Dr. Grim has said that

little tumors are what grow into bigger ones...so those of us with little

adenomas on both are pretty sure to have bilateral disease even if they could

lateralize it now to do an adrenalectomy. Many people with unilateral adenomas

have gotten relief that I know of, but just wanted to mention that Pub Med,

Mayo, the Italians and the Japanese who study and publish lots on this adrenal

stuff, have studied some long term folks..., Francis, Study Circle...can you

send the links?

I have a couple of questions: 1 )what is the etiology of ideopathic

hyperaldosteronism, hyperplasia, etc? and 2) does either Epler or Spiro cause

weight gain, long term? Is one better than the other as far as that's

concerned?

[Guest guest]

Forgot to mention that in searching for the long term effects of spiro or epler,

I found studies that found remission of micronodular adenomas, so quite

possibly, and hopefully, my little adenomas won't grow into bigger ones....when

I take my meds, I visualize them gone!

Since I've been on them, my lipids are back in range, they took me off my lipid

meds. My BP is beautiful. I'm still tired, but what I have to deal with when I

dare to take two weeks off, is to blame for that. I don't even remember whether

or not I updated since my last NIH stay, but if not, that's why. I had no idea

that my cardiac issues were actually adrenal issues, and that is so cool! One

MCB pill for 3 lipid ones. Also, my thyroid med is half what it used to be.

I go back in a year for follow up, in the meantime, I know about as much as they

do about what is going on with my adrenals and kidneys.

Another interesting sidenote, when I got home, one of my patient's had been

diagnosed with pancreatic cancer, stage 4. She had no symptoms, and apparently

no one does until late in the game. We are lucky, in that we have clear markers

of things amiss. Also, those abdominal MRI's we get might just be the screen

for stuff on those other parts not normally screened.

>

> The study protocol that and I are in is not the only study protocol for

endocrine issues. In fact, the last time I was there for two weeks, my roommate

came in under our protocol, but within a couple of days, they determined that

she no longer qualified due to labs that confirmed her aldosterone levels did

not meet protocol guidelines. In her case, she did not have high aldo, even

though she has a rather large adenoma on one side...they brought in Dr. Merke

(might be spelling her name wrong) and she is like Dr. Stratakis, in charge of a

whole other set of studies; one of which she fit into. She has CAH, which is a

congenital form of adrenal hyperplasia and her symptoms are more of an

underfunctioning adrenal rather than over producing adrenals. And more Cushing

than those of us with mild cushing issues...so if you don't qualify under the

protocol that and I did, then go to NIH search the studies and try the

other's based on their parameters.

>

> Also, in terms of future knowledge about taking one adrenal and disease of the

other one, I know there is literature online about that. Dr. Grim has said that

little tumors are what grow into bigger ones...so those of us with little

adenomas on both are pretty sure to have bilateral disease even if they could

lateralize it now to do an adrenalectomy. Many people with unilateral adenomas

have gotten relief that I know of, but just wanted to mention that Pub Med,

Mayo, the Italians and the Japanese who study and publish lots on this adrenal

stuff, have studied some long term folks..., Francis, Study Circle...can you

send the links?

>

> I have a couple of questions: 1 )what is the etiology of ideopathic

hyperaldosteronism, hyperplasia, etc? and 2) does either Epler or Spiro cause

weight gain, long term? Is one better than the other as far as that's

concerned?

>

[Guest guest]

Forgot to mention that in searching for the long term effects of spiro or epler,

I found studies that found remission of micronodular adenomas, so quite

possibly, and hopefully, my little adenomas won't grow into bigger ones....when

I take my meds, I visualize them gone!

Since I've been on them, my lipids are back in range, they took me off my lipid

meds. My BP is beautiful. I'm still tired, but what I have to deal with when I

dare to take two weeks off, is to blame for that. I don't even remember whether

or not I updated since my last NIH stay, but if not, that's why. I had no idea

that my cardiac issues were actually adrenal issues, and that is so cool! One

MCB pill for 3 lipid ones. Also, my thyroid med is half what it used to be.

I go back in a year for follow up, in the meantime, I know about as much as they

do about what is going on with my adrenals and kidneys.

Another interesting sidenote, when I got home, one of my patient's had been

diagnosed with pancreatic cancer, stage 4. She had no symptoms, and apparently

no one does until late in the game. We are lucky, in that we have clear markers

of things amiss. Also, those abdominal MRI's we get might just be the screen

for stuff on those other parts not normally screened.

>

> The study protocol that and I are in is not the only study protocol for

endocrine issues. In fact, the last time I was there for two weeks, my roommate

came in under our protocol, but within a couple of days, they determined that

she no longer qualified due to labs that confirmed her aldosterone levels did

not meet protocol guidelines. In her case, she did not have high aldo, even

though she has a rather large adenoma on one side...they brought in Dr. Merke

(might be spelling her name wrong) and she is like Dr. Stratakis, in charge of a

whole other set of studies; one of which she fit into. She has CAH, which is a

congenital form of adrenal hyperplasia and her symptoms are more of an

underfunctioning adrenal rather than over producing adrenals. And more Cushing

than those of us with mild cushing issues...so if you don't qualify under the

protocol that and I did, then go to NIH search the studies and try the

other's based on their parameters.

>

> Also, in terms of future knowledge about taking one adrenal and disease of the

other one, I know there is literature online about that. Dr. Grim has said that

little tumors are what grow into bigger ones...so those of us with little

adenomas on both are pretty sure to have bilateral disease even if they could

lateralize it now to do an adrenalectomy. Many people with unilateral adenomas

have gotten relief that I know of, but just wanted to mention that Pub Med,

Mayo, the Italians and the Japanese who study and publish lots on this adrenal

stuff, have studied some long term folks..., Francis, Study Circle...can you

send the links?

>

> I have a couple of questions: 1 )what is the etiology of ideopathic

hyperaldosteronism, hyperplasia, etc? and 2) does either Epler or Spiro cause

weight gain, long term? Is one better than the other as far as that's

concerned?

>

[Guest guest]

No good data so we need your story and u need to fill in your data inour data base. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 8, 2012, at 20:14, maggiekat7 <ljurkovic@...> wrote:

The study protocol that and I are in is not the only study protocol for endocrine issues. In fact, the last time I was there for two weeks, my roommate came in under our protocol, but within a couple of days, they determined that she no longer qualified due to labs that confirmed her aldosterone levels did not meet protocol guidelines. In her case, she did not have high aldo, even though she has a rather large adenoma on one side...they brought in Dr. Merke (might be spelling her name wrong) and she is like Dr. Stratakis, in charge of a whole other set of studies; one of which she fit into. She has CAH, which is a congenital form of adrenal hyperplasia and her symptoms are more of an underfunctioning adrenal rather than over producing adrenals. And more Cushing than those of us with mild cushing issues...so if you don't qualify under the protocol that and I did, then go to NIH search the studies and try the other's based on their parameters.

Also, in terms of future knowledge about taking one adrenal and disease of the other one, I know there is literature online about that. Dr. Grim has said that little tumors are what grow into bigger ones...so those of us with little adenomas on both are pretty sure to have bilateral disease even if they could lateralize it now to do an adrenalectomy. Many people with unilateral adenomas have gotten relief that I know of, but just wanted to mention that Pub Med, Mayo, the Italians and the Japanese who study and publish lots on this adrenal stuff, have studied some long term folks..., Francis, Study Circle...can you send the links?

I have a couple of questions: 1 )what is the etiology of ideopathic hyperaldosteronism, hyperplasia, etc? and 2) does either Epler or Spiro cause weight gain, long term? Is one better than the other as far as that's concerned?

[Guest guest]

The etiology of idiopathic is idiopathic. Which is Greek for we don't know what the hell it is. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 8, 2012, at 20:12, maggiekat7 <ljurkovic@...> wrote:

The study protocol that and I are in is not the only study protocol for endocrine issues. In fact, the last time I was there for two weeks, my roommate came in under our protocol, but within a couple of days, they determined that she no longer qualified due to labs that confirmed her aldosterone levels did not meet protocol guidelines. In her case, she did not have high aldo, even though she has a rather large adenoma on one side...they brought in Dr. Merke (might be spelling her name wrong) and she is like Dr. Stratakis, in charge of a whole other set of studies; one of which she fit into. She has CAH, which is a congenital form of adrenal hyperplasia and her symptoms are more of an underfunctioning adrenal rather than over producing adrenals. And more Cushing than those of us with mild cushing issues...so if you don't qualify under the protocol that and I did, then go to NIH search the studies and try the other's based on their parameters.

Also, in terms of future knowledge about taking one adrenal and disease of the other one, I know there is literature online about that. Dr. Grim has said that little tumors are what grow into bigger ones...so those of us with little adenomas on both are pretty sure to have bilateral disease even if they could lateralize it now to do an adrenalectomy. Many people with unilateral adenomas have gotten relief that I know of, but just wanted to mention that Pub Med, Mayo, the Italians and the Japanese who study and publish lots on this adrenal stuff, have studied some long term folks..., Francis, Study Circle...can you send the links?

I have a couple of questions: 1 )what is the etiology of ideopathic hyperaldosteronism, hyperplasia, etc? and 2) does either Epler or Spiro cause weight gain, long term? Is one better than the other as far as that's concerned?

[Guest guest]

Are u also DASHING?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jun 8, 2012, at 20:32, maggiekat7 <ljurkovic@...> wrote:

Forgot to mention that in searching for the long term effects of spiro or epler, I found studies that found remission of micronodular adenomas, so quite possibly, and hopefully, my little adenomas won't grow into bigger ones....when I take my meds, I visualize them gone!

Since I've been on them, my lipids are back in range, they took me off my lipid meds. My BP is beautiful. I'm still tired, but what I have to deal with when I dare to take two weeks off, is to blame for that. I don't even remember whether or not I updated since my last NIH stay, but if not, that's why. I had no idea that my cardiac issues were actually adrenal issues, and that is so cool! One MCB pill for 3 lipid ones. Also, my thyroid med is half what it used to be.

I go back in a year for follow up, in the meantime, I know about as much as they do about what is going on with my adrenals and kidneys.

Another interesting sidenote, when I got home, one of my patient's had been diagnosed with pancreatic cancer, stage 4. She had no symptoms, and apparently no one does until late in the game. We are lucky, in that we have clear markers of things amiss. Also, those abdominal MRI's we get might just be the screen for stuff on those other parts not normally screened.

>

> The study protocol that and I are in is not the only study protocol for endocrine issues. In fact, the last time I was there for two weeks, my roommate came in under our protocol, but within a couple of days, they determined that she no longer qualified due to labs that confirmed her aldosterone levels did not meet protocol guidelines. In her case, she did not have high aldo, even though she has a rather large adenoma on one side...they brought in Dr. Merke (might be spelling her name wrong) and she is like Dr. Stratakis, in charge of a whole other set of studies; one of which she fit into. She has CAH, which is a congenital form of adrenal hyperplasia and her symptoms are more of an underfunctioning adrenal rather than over producing adrenals. And more Cushing than those of us with mild cushing issues...so if you don't qualify under the protocol that and I did, then go to NIH search the studies and try the other's based on their parameters.

>

> Also, in terms of future knowledge about taking one adrenal and disease of the other one, I know there is literature online about that. Dr. Grim has said that little tumors are what grow into bigger ones...so those of us with little adenomas on both are pretty sure to have bilateral disease even if they could lateralize it now to do an adrenalectomy. Many people with unilateral adenomas have gotten relief that I know of, but just wanted to mention that Pub Med, Mayo, the Italians and the Japanese who study and publish lots on this adrenal stuff, have studied some long term folks..., Francis, Study Circle...can you send the links?

>

> I have a couple of questions: 1 )what is the etiology of ideopathic hyperaldosteronism, hyperplasia, etc? and 2) does either Epler or Spiro cause weight gain, long term? Is one better than the other as far as that's concerned?

>

[Guest guest]

I guess I missed it but can you tell us what your meds are? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of maggiekat7 Forgot to mention that in searching for the long term effects of spiro or epler, I found studies that found remission of micronodular adenomas, so quite possibly, and hopefully, my little adenomas won't grow into bigger ones....when I take my meds, I visualize them gone!Since I've been on them, my lipids are back in range, they took me off my lipid meds. My BP is beautiful. I'm still tired, but what I have to deal with when I dare to take two weeks off, is to blame for that. I don't even remember whether or not I updated since my last NIH stay, but if not, that's why. I had no idea that my cardiac issues were actually adrenal issues, and that is so cool! One MCB pill for 3 lipid ones. Also, my thyroid med is half what it used to be.

[Guest guest]

I don't know that this answers your question but here is a new study comparing

IHA with APA:

http://www.biomed.cas.cz/physiolres/pdf/prepress/932335.pdf

" Have main types of primary aldosteronism different phenotype? "

>

> > The study protocol that and I are in is not the only study protocol for

endocrine issues. In fact, the last time I was there for two weeks, my roommate

came in under our protocol, but within a couple of days, they determined that

she no longer qualified due to labs that confirmed her aldosterone levels did

not meet protocol guidelines. In her case, she did not have high aldo, even

though she has a rather large adenoma on one side...they brought in Dr. Merke

(might be spelling her name wrong) and she is like Dr. Stratakis, in charge of a

whole other set of studies; one of which she fit into. She has CAH, which is a

congenital form of adrenal hyperplasia and her symptoms are more of an

underfunctioning adrenal rather than over producing adrenals. And more Cushing

than those of us with mild cushing issues...so if you don't qualify under the

protocol that and I did, then go to NIH search the studies and try the

other's based on their parameters.

> >

> > Also, in terms of future knowledge about taking one adrenal and disease of

the other one, I know there is literature online about that. Dr. Grim has said

that little tumors are what grow into bigger ones...so those of us with little

adenomas on both are pretty sure to have bilateral disease even if they could

lateralize it now to do an adrenalectomy. Many people with unilateral adenomas

have gotten relief that I know of, but just wanted to mention that Pub Med,

Mayo, the Italians and the Japanese who study and publish lots on this adrenal

stuff, have studied some long term folks..., Francis, Study Circle...can you

send the links?

> >

> > I have a couple of questions: 1 )what is the etiology of ideopathic

hyperaldosteronism, hyperplasia, etc? and 2) does either Epler or Spiro cause

weight gain, long term? Is one better than the other as far as that's concerned?

> >

> >

>

[Guest guest]

no duh! (and by the way, I am half greek as well as fluent in speaking

it)...however, I was asking if any of your vast knowledge and research has

yielded any insight into why people idiopathically get HA? Thought that maybe we

could also idiopathically ditch it too. Just because it's called that doesn't

mean no one has made any advances...but then, what the hell do I know?

>

> > The study protocol that and I are in is not the only study protocol for

endocrine issues. In fact, the last time I was there for two weeks, my roommate

came in under our protocol, but within a couple of days, they determined that

she no longer qualified due to labs that confirmed her aldosterone levels did

not meet protocol guidelines. In her case, she did not have high aldo, even

though she has a rather large adenoma on one side...they brought in Dr. Merke

(might be spelling her name wrong) and she is like Dr. Stratakis, in charge of a

whole other set of studies; one of which she fit into. She has CAH, which is a

congenital form of adrenal hyperplasia and her symptoms are more of an

underfunctioning adrenal rather than over producing adrenals. And more Cushing

than those of us with mild cushing issues...so if you don't qualify under the

protocol that and I did, then go to NIH search the studies and try the

other's based on their parameters.

> >

> > Also, in terms of future knowledge about taking one adrenal and disease of

the other one, I know there is literature online about that. Dr. Grim has said

that little tumors are what grow into bigger ones...so those of us with little

adenomas on both are pretty sure to have bilateral disease even if they could

lateralize it now to do an adrenalectomy. Many people with unilateral adenomas

have gotten relief that I know of, but just wanted to mention that Pub Med,

Mayo, the Italians and the Japanese who study and publish lots on this adrenal

stuff, have studied some long term folks..., Francis, Study Circle...can you

send the links?

> >

> > I have a couple of questions: 1 )what is the etiology of ideopathic

hyperaldosteronism, hyperplasia, etc? and 2) does either Epler or Spiro cause

weight gain, long term? Is one better than the other as far as that's concerned?

> >

> >

>

[Guest guest]

Thanks , try therapistlocater.net and look for those with a designation of

Clinical Fellow. Check their bio and make sure they know trauma, ptsd issues...

There's a lot of AAMFT Clinical fellows that specialize in ptsd. If you find a

good therapist, they should be networked with good psychiatrists.

> >

> > > The study protocol that and I are in is not the only study protocol

for endocrine issues. In fact, the last time I was there for two weeks, my

roommate came in under our protocol, but within a couple of days, they

determined that she no longer qualified due to labs that confirmed her

aldosterone levels did not meet protocol guidelines. In her case, she did not

have high aldo, even though she has a rather large adenoma on one side...they

brought in Dr. Merke (might be spelling her name wrong) and she is like Dr.

Stratakis, in charge of a whole other set of studies; one of which she fit into.

She has CAH, which is a congenital form of adrenal hyperplasia and her symptoms

are more of an underfunctioning adrenal rather than over producing adrenals. And

more Cushing than those of us with mild cushing issues...so if you don't qualify

under the protocol that and I did, then go to NIH search the studies and

try the other's based on their parameters.

> > >

> > > Also, in terms of future knowledge about taking one adrenal and disease of

the other one, I know there is literature online about that. Dr. Grim has said

that little tumors are what grow into bigger ones...so those of us with little

adenomas on both are pretty sure to have bilateral disease even if they could

lateralize it now to do an adrenalectomy. Many people with unilateral adenomas

have gotten relief that I know of, but just wanted to mention that Pub Med,

Mayo, the Italians and the Japanese who study and publish lots on this adrenal

stuff, have studied some long term folks..., Francis, Study Circle...can you

send the links?

> > >

> > > I have a couple of questions: 1 )what is the etiology of ideopathic

hyperaldosteronism, hyperplasia, etc? and 2) does either Epler or Spiro cause

weight gain, long term? Is one better than the other as far as that's concerned?

> > >

> > >

> >

>

[Guest guest]

Also, are they doing genotype and phenotype testing on us as part of this

study/protocol? Because, if so, I have all my records and no genetic or

phenotype info is in it...? Obviously idiopathic is gonna come down to some

kind of cause, whether genetic or whatever, I am reading an interesting book on

the adrenaline system by an integrative doc. I am system's oriented and find

this way of looking at the RAS system in relation to the neuro system and others

is pretty enlightening and a bit confusing, at the same time. Maybe daunting is

a better discription. And a very interesting experience has been assembling all

of my medical records for as far back as I can possibly get them. I am reading

diagnoses I never was told I have. Reading about issues in procedure reports and

labs that I should have been aware of but was not told about. Stuff that would

have made a huge difference in a lot of my health, childbearing, and self care

choices. I wish I had done this all along, and now recommend highly that

everyone, get copies of all your healthcare records. Keep a record, get copies

of all discs, procedure reports, labs, consults, office notes and vital signs.

Read them, look at the flags in the labs, look at when your vitals went wild, or

just creeped up, and women, get your gyno records! If you are diagnosed with

Asherman's Syndrome, google Asherman's and read about it, please!

> > >

> > > > The study protocol that and I are in is not the only study protocol

for endocrine issues. In fact, the last time I was there for two weeks, my

roommate came in under our protocol, but within a couple of days, they

determined that she no longer qualified due to labs that confirmed her

aldosterone levels did not meet protocol guidelines. In her case, she did not

have high aldo, even though she has a rather large adenoma on one side...they

brought in Dr. Merke (might be spelling her name wrong) and she is like Dr.

Stratakis, in charge of a whole other set of studies; one of which she fit into.

She has CAH, which is a congenital form of adrenal hyperplasia and her symptoms

are more of an underfunctioning adrenal rather than over producing adrenals. And

more Cushing than those of us with mild cushing issues...so if you don't qualify

under the protocol that and I did, then go to NIH search the studies and

try the other's based on their parameters.

> > > >

> > > > Also, in terms of future knowledge about taking one adrenal and disease

of the other one, I know there is literature online about that. Dr. Grim has

said that little tumors are what grow into bigger ones...so those of us with

little adenomas on both are pretty sure to have bilateral disease even if they

could lateralize it now to do an adrenalectomy. Many people with unilateral

adenomas have gotten relief that I know of, but just wanted to mention that Pub

Med, Mayo, the Italians and the Japanese who study and publish lots on this

adrenal stuff, have studied some long term folks..., Francis, Study

Circle...can you send the links?

> > > >

> > > > I have a couple of questions: 1 )what is the etiology of ideopathic

hyperaldosteronism, hyperplasia, etc? and 2) does either Epler or Spiro cause

weight gain, long term? Is one better than the other as far as that's concerned?

> > > >

> > > >

> > >

> >

>