Where do I go from here

March 25, 2008

Dr. Grim and Group Members!

I seem to have no treatment options left. I controlled by BP for 20

years with Maxide ( I also take topro xl for palpitations which works

but never seemed to have any effect on BP). Two years ago my Bp went

out of control suddenly,pain in arms, hands, legs and feet got worse

and, potassium went down to 2.8 (potassium had been low for at least

15 years but not low enough to treat). I changed doctors as I didn't

feel well in general. He did a CT and that resulted in the discovery

of a 1.7 adenoma on the left adrenal gland. I was sent to an endo

who ran more blood tests and urine. Tests showed slightly elevated

Aldosterone/Renin and we decided to try to control the BP and

potassium with meds. I tried several BP meds and maximum dose of

potassium. Could only get potassium to 3.3-3.5 and BP remainded in

the 180-195/90-96 range. I tried spiro but was unable to tolerate it.

A salt loaded urine test finally showed elevated aldosterone and I

scheduled a left adrenalectomy.

Surgery went very well and all of the pain was gone immediately plus

BP was about 100/80. However, by two months post surgery, the pain

was back in arms, hands, legs, and feet. My BP started climbing and

after trying several BP meds I ended back on Maxide. I was hoping

this would last for a few years.

I wasn't that lucky. Last July, I started having symptoms again,

increased pain and facial flushing and sweats and not " feeling

well " . In August, an Aldosterone/Renin test was 23.8 (1-16). BP was

still in normal range but potassium was low - 3.1. I started on

potassium (1meq a day) and tried spiro again. I still was unable to

tolerate spiro and in November,2007, my Aldosterone/Renin was 23(1-

16) About 1 month ago, my BP started to climb again 160-170/80-90).

Another Aldosterone/Renin test was 44 (1-16) and I started on Inspra,

hoping that it would work. I'm on my 6th day of Inspra and I'm

nauseous all day and having flushing off and on all day. I don't

think I can stay on this drug.

My question is where do I go from here? Both my endo and primary are

talking about surgery and I don't know of any other options. A

recent CT showed nothing on the right adrenal gland. My sodium has

run low since at least 1990 so I'm afraid to cut more salt out of my

diet. Is there anything else I might do? Has anyone else had a

similar experience?

Jan

March 29, 2008

-Dear VAl

Sorry I wasn't totally clear on me problems. I have tried both Spiro

and Inspra and a bunch of combinations. I have tried dropping Maxide

4 times and my BP always goes up without it. I'm somewhat lucky that

my sodium runs low/low normal but with spiro, my sodium goes down to

dangerously low levels. As low as 114 and it took awhile off of it

to normalize again. That was on only 25mg. Also, my k went up to

5.8. It's a wander I didn't go to the ER. Besides that, I was

extremely nauseous and dizzy all the time. The left adrenalectomy

resolved those problems and my vitals normalized. I still needed bp

meds and after trying other meds(my doctors really wanted to get me

off of maxide) but I finally had to go back to maxide and my doctors

are with me that this is the drug that works for me. My k and sodium

stayed in normal range for 10 months. Sodium was low/low normal but

in acceptable range. I'm luckier than you as my sodium stays low

but I wouldn't dare limit sodium and risk sodium depletion. My bp

recently spiked again and I gave Inspra a try but after 4 days I had

the same symptoms that I had on Spiro. I guess that for the time

being, I will just try to keep as healthy as possible and hope that

my bp stays out of stroke levels.

On another note, I wanted to tell you that you are not alone with the

flushing and sweats. I had the same type of sweats before surgery,

then again when my aldosterone went up again and just recently while

I was on Inspra. It is definitely a symtom of PA and I think it is

also a side effect of the aldo blockers. I can really empathize with

you as when it's bad I don't want to do anything. Right now, I have

somewhat normalized but I would sure like my life back.

Good luck to you and let me know if you might come up with any new

treatment or drug.

Jan

-- In hyperaldosteronism , " Valarie " <val@...>

wrote:

>

> Jan, if it is any consolation, I started my aldo blocker life on

Inspra. It

> made me sick so I requested a change to spiro. Before endo got

back to me

> (a week later) I was starting to tolerate Inspra a little better.

Others

> here have been able to very gradually taper up on it. Perhaps a

combo could

> be found for you where you could gradually taper onto Inspra?

>

> Sorry you're having all these problems. AVS would have been

indicated

> before your surgery.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of

ipscalifornia

> Dr. Grim and Group Members!

>

> I seem to have no treatment options left. I controlled by BP for 20

> years with Maxide ( I also take topro xl for palpitations which

works

> but never seemed to have any effect on BP). Two years ago my Bp

went

> out of control suddenly,pain in arms, hands, legs and feet got

worse

> and, potassium went down to 2.8 (potassium had been low for at

least

> 15 years but not low enough to treat). I changed doctors as I

didn't

> feel well in general. He did a CT and that resulted in the

discovery

> of a 1.7 adenoma on the left adrenal gland. I was sent to an endo

> who ran more blood tests and urine. Tests showed slightly elevated

> Aldosterone/Renin and we decided to try to control the BP and

> potassium with meds. I tried several BP meds and maximum dose of

> potassium. Could only get potassium to 3.3-3.5 and BP remainded in

> the 180-195/90-96 range. I tried spiro but was unable to tolerate

it.

> A salt loaded urine test finally showed elevated aldosterone and I

> scheduled a left adrenalectomy.

>

> Surgery went very well and all of the pain was gone immediately

plus

> BP was about 100/80. However, by two months post surgery, the pain

> was back in arms, hands, legs, and feet. My BP started climbing and

> after trying several BP meds I ended back on Maxide. I was hoping

> this would last for a few years.

>

> I wasn't that lucky. Last July, I started having symptoms again,

> increased pain and facial flushing and sweats and not " feeling

> well " . In August, an Aldosterone/Renin test was 23.8 (1-16). BP was

> still in normal range but potassium was low - 3.1. I started on

> potassium (1meq a day) and tried spiro again. I still was unable to

> tolerate spiro and in November,2007, my Aldosterone/Renin was 23(1-

> 16) About 1 month ago, my BP started to climb again 160-170/80-90).

> Another Aldosterone/Renin test was 44 (1-16) and I started on

Inspra,

> hoping that it would work. I'm on my 6th day of Inspra and I'm

> nauseous all day and having flushing off and on all day. I don't

> think I can stay on this drug.

>

> My question is where do I go from here? Both my endo and primary

are

> talking about surgery and I don't know of any other options. A

> recent CT showed nothing on the right adrenal gland. My sodium has

> run low since at least 1990 so I'm afraid to cut more salt out of

my

> diet. Is there anything else I might do? Has anyone else had a

> similar experience?

>

March 29, 2008

My goodness, Jan, I am so sorry to hear all this. You are between a rock

and a very hard place. Let us know how you do. I've been reading back

through old messages and often wonder about it when people just disappear.

Hopefully, they all just got better and didn't need us.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of ipscalifornia