Re: Val's story ... continuing

[Guest guest]

Maybe the endocrinologist will give you Inspra or Aldactone. Start at

a very low dose and titrate up.

>

> Continuing .

>

> I just got a call from my doc re: aldosterone/renin. My aldo was

27.5 (4 -

> 31). The lab notes it is " high. " But renin was 1.35. That is rather

low but

> yields an ARR of just over 20.

>

> Also, that was after 6 days of 200 mg P. I'm going to do a 24-hour

urine

> next week and re-check aldo + the pheo hormones. She also mentioned

> pheochromocytoma as a possibility. My pheo tests three years ago

were all

> good. I haven't gotten back any tests for potassium, lipids, etc. I

know my

> lipids are bad.

>

> Here's an article that talks about P and aldo:

> http://jcem.endojournals.org/cgi/content/a...ract/91/10/3981

> <http://jcem.endojournals.org/cgi/content/abstract/91/10/3981>

>

> Interestingly, my nine days of progesterone this month didn't

bother me.

> Some months, toward the last days, P makes me nervous and uptight -

probably

> a result of low K and dehydration. My use of estradiol through

> December/early January was spotty. Some days I think it increases my

> anxiety; other days, I'm not sure.

>

> She won't give me a 2-week trial of an aldo blocker. She wants me

to see an

> endo. I am on triam/HCTZ 37.5-25. That's about all she's willing to

> prescribe until I see an endo. BP is running average about 150/90

but

> sometimes drops as low as 137/85. I don't think the drug is doing

much.

> Until I try an aldo blocker, I don't want to schedule at Mayo.

>

> She wants me to take Fosamax. Darn. I don't know what to do. My

spine

> T-score was - 2.61. That is only slightly worse than seven years

ago (-2.51)

> but I'm losing height. My bones started disintegrating after at

least 14

> years of undiagnosed and untreated hyperparathyroidism.

>

> Anxiety and early morning sweats continue. Nerves have been

horrible today,

> but probably not terribly worse than other days. I started back on

estradiol

> after being off for six days. I only used 0.75 mg (1/2 normal

dose). I will

> stay off it tomorrow and see what happens. I take a Valerian capsule

> sometimes and when really bad, 1/2 mg of Ativan. I am still weak.

>

> At least she is saying there is something else going on. She said

she's

> worried about my adrenals.

>

> I'm sick of this. Do I take Foxamax? Until I try an aldo blocker,

I don't

> want to schedule at Mayo.

>

> Val

>

>

>

[Guest guest]

That's what I will ask for.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of airlinerg

Maybe the endocrinologist will give you Inspra or Aldactone. Start at

a very low dose and titrate up.

[Guest guest]

Val,

I am new to the Conn's syndrome - undergoing workup right now, BUT I am not new

to rare endo disorders - I have carcinoid syndrome. Have been down the

diagnostic path many times and can totally relate to your frustration and

understand why you would prefer to start the aldo blocker BUT there is something

you may want to consider.

Are you aware of a condition called multiple endocrine neoplasia? Here is a

website that gives a basic overview. You can find out a lot more info with a

google search of multiple endocrine neoplsia.

http://www.merck.com/mmpe/sec12/ch162/ch162c.html

As much as I empathize with your preferences (I got to a point after 3.5 years

of testing following my original diagnosis that I just couldn't take anymore-

financially, emotionally, physically- I just wanted medicine to control the

symptoms and to get on with my life) I am with your doc on this.

I really think your doc is making the right recommendation to send you to an

endo - and if you can go to Mayo, I would.

Best of luck,

Joyce in Cinci

---- Valarie <val@...> wrote:

> Continuing .

>

> I just got a call from my doc re: aldosterone/renin. My aldo was 27.5 (4 -

> 31). The lab notes it is " high. " But renin was 1.35. That is rather low but

> yields an ARR of just over 20.

>

> Also, that was after 6 days of 200 mg P. I'm going to do a 24-hour urine

> next week and re-check aldo + the pheo hormones. She also mentioned

> pheochromocytoma as a possibility. My pheo tests three years ago were all

> good. I haven't gotten back any tests for potassium, lipids, etc. I know my

> lipids are bad.

>

> Here's an article that talks about P and aldo:

> http://jcem.endojournals.org/cgi/content/a...ract/91/10/3981

> <http://jcem.endojournals.org/cgi/content/abstract/91/10/3981>

>

> Interestingly, my nine days of progesterone this month didn't bother me.

> Some months, toward the last days, P makes me nervous and uptight - probably

> a result of low K and dehydration. My use of estradiol through

> December/early January was spotty. Some days I think it increases my

> anxiety; other days, I'm not sure.

>

> She won't give me a 2-week trial of an aldo blocker. She wants me to see an

> endo. I am on triam/HCTZ 37.5-25. That's about all she's willing to

> prescribe until I see an endo. BP is running average about 150/90 but

> sometimes drops as low as 137/85. I don't think the drug is doing much.

> Until I try an aldo blocker, I don't want to schedule at Mayo.

>

> She wants me to take Fosamax. Darn. I don't know what to do. My spine

> T-score was - 2.61. That is only slightly worse than seven years ago (-2.51)

> but I'm losing height. My bones started disintegrating after at least 14

> years of undiagnosed and untreated hyperparathyroidism.

>

> Anxiety and early morning sweats continue. Nerves have been horrible today,

> but probably not terribly worse than other days. I started back on estradiol

> after being off for six days. I only used 0.75 mg (1/2 normal dose). I will

> stay off it tomorrow and see what happens. I take a Valerian capsule

> sometimes and when really bad, 1/2 mg of Ativan. I am still weak.

>

> At least she is saying there is something else going on. She said she's

> worried about my adrenals.

>

> I'm sick of this. Do I take Foxamax? Until I try an aldo blocker, I don't

> want to schedule at Mayo.

>

> Val

>

>

>

[Guest guest]

What meds and diet were you on when the renin and aldo was tested.

What is the normal renin in that lab?

Progesterone can block aldo and this is the reason PA usually gets

better during pregnancy.

Bone problems are not our area of expertise here.

On Jan 18, 2008, at 8:34 PM, Valarie wrote:

> Continuing .

>

> I just got a call from my doc re: aldosterone/renin. My aldo was

> 27.5 (4 -

> 31). The lab notes it is " high. " But renin was 1.35. That is rather

> low but

> yields an ARR of just over 20.

>

> Also, that was after 6 days of 200 mg P. I'm going to do a 24-hour

> urine

> next week and re-check aldo + the pheo hormones. She also mentioned

> pheochromocytoma as a possibility. My pheo tests three years ago

> were all

> good. I haven't gotten back any tests for potassium, lipids, etc. I

> know my

> lipids are bad.

>

> Here's an article that talks about P and aldo:

> http://jcem.endojournals.org/cgi/content/a...ract/91/10/3981

> <http://jcem.endojournals.org/cgi/content/abstract/91/10/3981>

>

> Interestingly, my nine days of progesterone this month didn't

> bother me.

> Some months, toward the last days, P makes me nervous and uptight -

> probably

> a result of low K and dehydration. My use of estradiol through

> December/early January was spotty. Some days I think it increases my

> anxiety; other days, I'm not sure.

>

> She won't give me a 2-week trial of an aldo blocker. She wants me

> to see an

> endo. I am on triam/HCTZ 37.5-25. That's about all she's willing to

> prescribe until I see an endo. BP is running average about 150/90 but

> sometimes drops as low as 137/85. I don't think the drug is doing

> much.

> Until I try an aldo blocker, I don't want to schedule at Mayo.

>

> She wants me to take Fosamax. Darn. I don't know what to do. My spine

> T-score was - 2.61. That is only slightly worse than seven years

> ago (-2.51)

> but I'm losing height. My bones started disintegrating after at

> least 14

> years of undiagnosed and untreated hyperparathyroidism.

>

> Anxiety and early morning sweats continue. Nerves have been

> horrible today,

> but probably not terribly worse than other days. I started back on

> estradiol

> after being off for six days. I only used 0.75 mg (1/2 normal

> dose). I will

> stay off it tomorrow and see what happens. I take a Valerian capsule

> sometimes and when really bad, 1/2 mg of Ativan. I am still weak.

>

> At least she is saying there is something else going on. She said

> she's

> worried about my adrenals.

>

> I'm sick of this. Do I take Foxamax? Until I try an aldo blocker, I

> don't

> want to schedule at Mayo.

>

> Val

>

>

[Guest guest]

I will respond to this when I get the printed copies of the reports. This

was LabCorp. I don't think doc has ever ordered renin. She couldn't find a

normal range when she talked to me on the phone. I am on very, very low

salt (afraid of the paralysis episodes), no prepared food. Typical meal for

me is 2 oz chicken baked in balsamic vinegar, salad, veggie and sm sweet

potato.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

What meds and diet were you on when the renin and aldo was tested.

What is the normal renin in that lab?

Progesterone can block aldo and this is the reason PA usually gets

better during pregnancy.

[Guest guest]

Yes, I am aware of MEN. My urinary catecholamines have all been good, so far.

The only irregular tests have been renin and aldosterone. ACTH was very

elevated during one episode but normalized a few months later. I have been

hypothyroid for probably 23 years (treated for 13 years). I've never had

nodules, swelling, etc of the thyroid. In fact, it feels perfectly normal to

docs. I had a parathyroid adenoma removed in 1999 and my calcium has looked

very good since then. I had that adenoma at least 14 years before surgery and

it did a serious number on my bones. My BP totally normalized after the

parathyroid surgery and then shot up again two years later.

I want to see what a trial of Inspra will do before I make a decision about

going to Mayo. I know I will not have AVS anywhere but Mayo.

Everyone on this board would really like to know your levels of aldosterone,

renin and potassium. Do you have copies of your tests? BTW, I also get sick on

car trips - terrible fatigue and nerves. This last time (500 miles), I tried

drinking oodles of water and I think that helped.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of carcinoidnews@...

Val,

I am new to the Conn's syndrome - undergoing workup right now, BUT I am not new

to rare endo disorders - I have carcinoid syndrome. Have been down the

diagnostic path many times and can totally relate to your frustration and

understand why you would prefer to start the aldo blocker BUT there is something

you may want to consider.

Are you aware of a condition called multiple endocrine neoplasia? Here is a

website that gives a basic overview. You can find out a lot more info with a

google search of multiple endocrine neoplsia.

http://www.merck.com/mmpe/sec12/ch162/ch162c.html

As much as I empathize with your preferences (I got to a point after 3.5 years

of testing following my original diagnosis that I just couldn't take anymore-

financially, emotionally, physically- I just wanted medicine to control the

symptoms and to get on with my life) I am with your doc on this.

I really think your doc is making the right recommendation to send you to an

endo - and if you can go to Mayo, I would.

[Guest guest]

Oodles - I love it.

Valarie wrote:

>

> Yes, I am aware of MEN. My urinary catecholamines have all been good,

> so far. The only irregular tests have been renin and aldosterone. ACTH

> was very elevated during one episode but normalized a few months

> later. I have been hypothyroid for probably 23 years (treated for 13

> years). I've never had nodules, swelling, etc of the thyroid. In fact,

> it feels perfectly normal to docs. I had a parathyroid adenoma removed

> in 1999 and my calcium has looked very good since then. I had that

> adenoma at least 14 years before surgery and it did a serious number

> on my bones. My BP totally normalized after the parathyroid surgery

> and then shot up again two years later.

>

> I want to see what a trial of Inspra will do before I make a decision

> about going to Mayo. I know I will not have AVS anywhere but Mayo.

>

> Everyone on this board would really like to know your levels of

> aldosterone, renin and potassium. Do you have copies of your tests?

> BTW, I also get sick on car trips - terrible fatigue and nerves. This

> last time (500 miles), I tried drinking oodles of water and I think

> that helped.

>

> Val

>

> From: hyperaldosteronism

> <mailto:hyperaldosteronism%40>

> [mailto:hyperaldosteronism

> <mailto:hyperaldosteronism%40>] On Behalf Of

> carcinoidnews@... <mailto:carcinoidnews%40fuse.net>

>

> Val,

>

> I am new to the Conn's syndrome - undergoing workup right now, BUT I

> am not new to rare endo disorders - I have carcinoid syndrome. Have

> been down the diagnostic path many times and can totally relate to

> your frustration and understand why you would prefer to start the aldo

> blocker BUT there is something you may want to consider.

>

> Are you aware of a condition called multiple endocrine neoplasia? Here

> is a website that gives a basic overview. You can find out a lot more

> info with a google search of multiple endocrine neoplsia.

>

> http://www.merck.com/mmpe/sec12/ch162/ch162c.html

> <http://www.merck.com/mmpe/sec12/ch162/ch162c.html>

>

> As much as I empathize with your preferences (I got to a point after

> 3.5 years of testing following my original diagnosis that I just

> couldn't take anymore- financially, emotionally, physically- I just

> wanted medicine to control the symptoms and to get on with my life) I

> am with your doc on this.

>

> I really think your doc is making the right recommendation to send you

> to an endo - and if you can go to Mayo, I would.

>

[Guest guest]

Cool- sorry to be giving unsolicited advice - and totally understand your

reasons for wanting the Inspira trial first. (I think I misunderstood your other

email - I somehow read it to be that you had had pheo at some time prior but

that last tests were normal - sorry about that).

Only reason I brought it up is because the one thing I have learned in this 10

year+ journey of rare endocrine disease is that often the reason it takes so

long to get properly diagnosed is that the docs just didn't think of the

diagnosis in the first place. So I try to err on the side of getting info out

for consideration- if it's not needed, it can be disregarded, no harm, no foul

:)

It's that old med school saying of " if you hear hoofbeats, think horses not

Zebras "

My favorite carcinoid expert, Dr. Woltering in Lousiana, has said of people with

carcinoid that we are so rare that we are like pink and white striped zebras

with purple polka dots! I think that can certainly be said of other rare endo

diseases as well!

Best of luck to you with this!

Joyce in Cinci

---- Valarie <val@...> wrote:

> Yes, I am aware of MEN. My urinary catecholamines have all been good, so far.

The only irregular tests have been renin and aldosterone. ACTH was very

elevated during one episode but normalized a few months later. I have been

hypothyroid for probably 23 years (treated for 13 years). I've never had

nodules, swelling, etc of the thyroid. In fact, it feels perfectly normal to

docs. I had a parathyroid adenoma removed in 1999 and my calcium has looked

very good since then. I had that adenoma at least 14 years before surgery and

it did a serious number on my bones. My BP totally normalized after the

parathyroid surgery and then shot up again two years later.

>

> I want to see what a trial of Inspra will do before I make a decision about

going to Mayo. I know I will not have AVS anywhere but Mayo.

>

> Everyone on this board would really like to know your levels of aldosterone,

renin and potassium. Do you have copies of your tests? BTW, I also get sick on

car trips - terrible fatigue and nerves. This last time (500 miles), I tried

drinking oodles of water and I think that helped.

>

> Val

>

> From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of carcinoidnews@...

>

>

> Val,

>

> I am new to the Conn's syndrome - undergoing workup right now, BUT I am not

new to rare endo disorders - I have carcinoid syndrome. Have been down the

diagnostic path many times and can totally relate to your frustration and

understand why you would prefer to start the aldo blocker BUT there is something

you may want to consider.

>

> Are you aware of a condition called multiple endocrine neoplasia? Here is a

website that gives a basic overview. You can find out a lot more info with a

google search of multiple endocrine neoplsia.

>

> http://www.merck.com/mmpe/sec12/ch162/ch162c.html

>

> As much as I empathize with your preferences (I got to a point after 3.5 years

of testing following my original diagnosis that I just couldn't take anymore-

financially, emotionally, physically- I just wanted medicine to control the

symptoms and to get on with my life) I am with your doc on this.

>

> I really think your doc is making the right recommendation to send you to an

endo - and if you can go to Mayo, I would.

>

>

>

>

>

[Guest guest]

carcinoidnews@... wrote:

>

> Cool- sorry to be giving unsolicited advice - and totally understand

> your reasons for wanting the Inspira trial first. (I think I

> misunderstood your other email - I somehow read it to be that you had

> had pheo at some time prior but that last tests were normal - sorry

> about that).

>

> Only reason I brought it up is because the one thing I have learned in

> this 10 year+ journey of rare endocrine disease is that often the

> reason it takes so long to get properly diagnosed is that the docs

> just didn't think of the diagnosis in the first place. So I try to err

> on the side of getting info out for consideration- if it's not needed,

> it can be disregarded, no harm, no foul :)

>

> It's that old med school saying of " if you hear hoofbeats, think

> horses not Zebras "

>

zebras do exist, however. Worth looking for stripes in case.

>

>

> My favorite carcinoid expert, Dr. Woltering in Lousiana, has said of

> people with carcinoid that we are so rare that we are like pink and

> white striped zebras with purple polka dots! I think that can

> certainly be said of other rare endo diseases as well!

>

We of the late stage PA wonder how much of the " rareness " is from not

looking. Our AMA prevalence estimate in the population of hypertensives

jumped from " less than 1 percent " to " 18 percent large samples. . .20

percent oversll " in 2006. The AMA started looking. Maybe there are

more pink polka dots than they think.

>

>

> Best of luck to you with this!

>

> Joyce in Cinci

>

[Guest guest]

---- Dave <riothamus2@...> wrote:

> carcinoidnews@... wrote:

> >

> >> >

> > It's that old med school saying of " if you hear hoofbeats, think

> > horses not Zebras "

> >

>

> zebras do exist, however. Worth looking for stripes in case.

I agree wholeheartedly!!

> >

> >

> > My favorite carcinoid expert, Dr. Woltering in Lousiana, has said of

> > people with carcinoid that we are so rare that we are like pink and

> > white striped zebras with purple polka dots! I think that can

> > certainly be said of other rare endo diseases as well!

> >

>

> We of the late stage PA wonder how much of the " rareness " is from not

> looking. Our AMA prevalence estimate in the population of hypertensives

> jumped from " less than 1 percent " to " 18 percent large samples. . .20

> percent oversll " in 2006. The AMA started looking. Maybe there are

> more pink polka dots than they think.

> >

>

Well said!

>

Joyce in Cinci

[Guest guest]

About what we found in 1976 or so.

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.

On Jan 20, 2008, at 5:58 PM, Dave wrote:

> We of the late stage PA wonder how much of the " rareness " is from not

> looking. Our AMA prevalence estimate in the population of

> hypertensives

> jumped from " less than 1 percent " to " 18 percent large samples. . .20

> percent oversll " in 2006. The AMA started looking. Maybe there are

> more pink polka dots than they think.

CE Grim MS, MD

High Blood Pressure Consulting

Clnical Professor of Medicine Medical Colege of Wisconsin

Board certified in Internal Med, Geritrics and Hypertension.

Interests: The effect of recent evolutionary forces on high blood

pressure in human populations.