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Hi I am Jan and I also have Hep C...I am also on Paxil for depresssion and I too have just had a hysterectomy 4 months ago and they have changed my hormones 3 times..I a m on the shots right now and they can make you feel odd..I seeem to have trouble seeing well right after one but then they don't seem to last till the 30 days are up..I am going today to my GYN to talk to him about it..Now as far as affording treatment there are programs out there that can help yopu because I too was unable to afford it..There are alot of us in here that do understand your situation..Call your Dr. and have tests ran to see your ALTs and liver enzyme levels..That's the first place to start..Then they will help you from there..Someone in this group can help you more with advice but I am here to let you know I do understand the fear and confusion..PLEASE feel free to e-mail us anytime just to vent off any feelings or to ask any questions...By the way what is your name??

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You should be ok (relatively speaking ) Hep C usually progresses slowly and most don't die from it. Not to say that it is not a formidable foe it is. Sounds to me like they have your hormone balance all messed up there and you did not mention what the nature of your COPD is. Perhaps the most important thing for now for you to get your viral load and a liver biopsy done and see just where you are at. Treatment can be expensive and yes it does have its side effects however I wouldn't dismiss it totally as a possibility we have those in this list who have wonderful success on it. There is supposedly a way for those without resources to still qualify to receive treatment however I am not sure just how one does that . Right now you are in shock. The day my son called and gave us his diagnosis I thought the world had ended for sure. Now I see there is hope in abundance and the world has just changed not ended. Just know we are here for you.... [ ] WHERE DO I GO FROM HERE HELLO, Well I dont know where to begin.. But I will say that I just found out yesterday that I have tested HEPATITIS C positive, now what do I do. Some history, I have been taking Synthroid for Hypothyroidism for three years, and the Dr can never get my level right, I have COPD ( chronic obstructive pulmonary disease ), I was put on Ativan 1mg 3 times a day for panic disorder, I am now withdrawing off of that, Im now down to 1/2 mg daily, let me tell you thats been hell....lol I have had a Hysterectomy, so I take hormone replacement in the form of a shot every thirty days, well three months ago, my Dr. changed the medicine to straight ESTROGEN, AND LET ME TELL YOU THAT HAS REALLY MESSED ME UP, ITS BEEN CHANGED FOR THREE MONTHS, AND IN THAT THREE MONTHS i HAVE BEEN SO SICK, SEVERE DIZZINESS WHERE i CANT EVEN WALK, NAUSEA TO BEAT ALL , AND SEVERE MIGRAINES, AND NOW MY APPETITE IS GOING. I wonder if this new hormone injection has anything to do with my onset of new symptoms, this is why I got checked for the Hepatitis C. So now where do I go from here, am I dying, if so when, I have to go see some kind of liver specialist. Im new to this and Im so scared, Im 37, have four children....20,19,18,14 and 1 grandaughter age one. I hope anyone that reads this understands it. Any response would be greatly appreciated. Thank you, P.S. I in no way would ever be able to afford treatment, even if I could I dont think I could live through it with the side effects.

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, rest assured hepc is not a death sentence. I am

42 weeks into treatment and I have 6 weeks to go. The

virus has been undetectable since the 24th week. The

sides are no picnic but they aren't as bad as I

expected. I have 5 kids (4 at home) so if you were to

do treatment at some point, I would make sure they

know what to expect. Also, more people die with hepc

than from it. It is a slow disease. You need to find

out your viral load, genotype and have a liver biopsy

(which sounds worse than it is). Then you can have

enough facts to go from there.

Welcome to the group and we will be here to talk to

any time.

Sharon

--- kissaberry <kissaberry@...> wrote:

> HELLO,

> Well I dont know where to begin.. But I will say

> that I just found

> out yesterday that I have tested HEPATITIS C

> positive, now what do I

> do.

> Some history, I have been taking Synthroid for

> Hypothyroidism for

> three years, and the Dr can never get my level

> right, I have COPD (

> chronic obstructive pulmonary disease ), I was put

> on Ativan 1mg 3

> times a day for panic disorder, I am now withdrawing

> off of that, Im

> now down to 1/2 mg daily, let me tell you thats been

> hell....lol

> I have had a Hysterectomy, so I take hormone

> replacement in the

> form of a shot every thirty days, well three months

> ago, my Dr.

> changed the medicine to straight ESTROGEN, AND LET

> ME TELL YOU THAT

> HAS REALLY MESSED ME UP, ITS BEEN CHANGED FOR THREE

> MONTHS, AND IN

> THAT THREE MONTHS i HAVE BEEN SO SICK, SEVERE

> DIZZINESS WHERE i CANT

> EVEN WALK, NAUSEA TO BEAT ALL , AND SEVERE

> MIGRAINES, AND NOW MY

> APPETITE IS GOING.

> I wonder if this new hormone injection has

> anything to do with

> my onset of new symptoms, this is why I got checked

> for the Hepatitis

> C.

> So now where do I go from here, am I dying, if

> so when, I have

> to go see some kind of liver specialist.

> Im new to this and Im so scared, Im 37, have

> four

> children....20,19,18,14 and 1 grandaughter age one.

> I hope anyone that reads this understands it.

> Any response would be greatly appreciated.

> Thank you,

>

> P.S. I in no way would ever be able to afford

> treatment, even if I

> could I dont think I could live through it with the

> side effects.

>

>

__________________________________________________

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welcome to the group. I found out that I had Hep C last year & started treatment this last January & have been undected for the virus saence 4 month's into treatment. Hep C is transmitted through the blood "a shared needle tatoo, IV drug use & blood transfuion. Try not to get depressed this is beatable.

We will be praying for you.

Terry

kissaberry wrote:

HELLO, Well I dont know where to begin.. But I will say that I just found out yesterday that I have tested HEPATITIS C positive, now what do I do. Some history, I have been taking Synthroid for Hypothyroidism for three years, and the Dr can never get my level right, I have COPD ( chronic obstructive pulmonary disease ), I was put on Ativan 1mg 3 times a day for panic disorder, I am now withdrawing off of that, Im now down to 1/2 mg daily, let me tell you thats been hell....lol I have had a Hysterectomy, so I take hormone replacement in the form of a shot every thirty days, well three months ago, my Dr. changed the medicine to straight ESTROGEN, AND LET ME TELL YOU THAT HAS REALLY MESSED ME UP, ITS BEEN CHANGED FOR THREE MONTHS, AND IN THAT THREE MONTHS i HAVE BEEN SO SICK, SEVERE DIZZINESS WHERE i CANT EVEN WALK, NAUSEA TO BEAT ALL , AND SEVERE MIGRAINES, AND NOW MY APPETITE IS GOING. I wonder if this new hormone injection has anything to do with my onset of new symptoms, this is why I got checked for the Hepatitis C. So now where do I go from here, am I dying, if so when, I have to go see some kind of liver specialist. Im new to this and Im so scared, Im 37, have four children....20,19,18,14 and 1 grandaughter age one. I hope anyone that reads this understands it. Any response would be greatly appreciated. Thank you, P.S. I in no way would ever be able to afford treatment, even if I could I dont think I could live through it with the side effects.

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Dear :

I am 46 years old and have known that I have Hep-C, for about 6 years. I don't know if you read my letter to aniwodi2@... is my cousin. N-E-ways...my husband passed away july 27th,2001. He had cirrhosis of the liver, copd, hep-c, and when we went for a liver transplant they found Cancer of the liver. He was a very sick man. I have moved to Kennedale tx. and have not been treated as of yet. I take Milk Thistle and a bunch of vitamins. I haven't had any symptoms other than being tired. I work hard and try to stay as active as I can. Would love to know more about this illness. I have been through a lot with my husband and know what to look for. My sister just found out last month that she has it too. We have heard of some experimental testing. Do you know anything about it? Would love to hear something. Thanks, Pam

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Hi,

I'm , 41, did the treatment 2 years ago, and have been in

remission since Oct. 2000. This excerpt is from a newsletter that I

put out for our support group. I hope it helps you. We have all

been there in that initial panic stage. By the way, if you do the

treatment, people who start it before age 40 tend to respond better

that older folks.

Take Care,

Just Diagnosed... What Should I Do?

The information you receive when you are first diagnosed with

hepatitis C can indeed be overwhelming. You may not even know that

much about the disease, much less what should you do next.

Unfortunately, some doctors do not communicate clearly with their

patients, and it is up to you to educate yourself and advocate for

your health. If you are asking yourself " what next? " , these tips

will be helpful to you.

-Know your genotype. There are 31 different genotypes of hepatitis

C. Your genotype may determine the length of treatment.

-Get a liver biopsy. It sounds much scarier than it is, but it is

the only way to know exactly how much damage the virus has done to

the liver. Biopsy results are given in stages and grades of 0-4;

with 0 being little or no damage, and 4 being more severe.

-Ask your doctor for a copy of your lab & biopsy results. Keep them

in a folder and learn what the numbers mean.

-Get vaccinated against Hep A & B. When you have hep C, your liver

is under attack. An additional attack of hep A or B can speed up the

damage to your liver, or even kill you quickly. Hep A is a series of

2 shots over 1 month, and Hep B is a series of 3 shots over a 6 month

period. If you start the vaccinations and don't finish the regimen,

you will not be protected against further liver damage.

-Ask your doctor questions. If you are not happy with your medical

care, get a new doctor!

-EDUCATE YOURSELF ! Don't be afraid to ask questions, read articles,

surf the web(although not everything on the internet is the truth).

Remember: Knowledge is power!

-Join a support group. You are not alone! Many other people are

dealing with this illness, too. They can provide you with valuable

information and a core of emotional support.

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Hi Pam,

I'm so sorry to hear about your husband. You probably learned a

lot helping him deal with his illnesses. I don't really have much

information about clinical trials, but you can look that info up on

clinicaltrials.gov . You sound like you're doing pretty well, except

for that damn fatigue! I don't know how far you are from Houston,

but in Nov. Hepatitis Magazine is hosting a hepatitis conference.

Three people from our support group will be going there (myself

included). I went to the Walk On Washington last year hosted by

Hepatitis Foundation International. It was very interesting...

workshops and seminars by doctors, nutritionists, etc., the latest

research findings. Some of it was highly technical, but nontheless,

it was great. I took lots of notes and made a couple of presentations

to our support group members on the information I learned while

there.You may want to check out the one in Houston. I guarantee it

will be a learning experience.

> Dear :

> I am 46 years old and have known that I have Hep-C, for about 6

years. I

> don't know if you read my letter to aniwodi2@y... is my cousin.

> N-E-ways...my husband passed away july 27th,2001. He had cirrhosis

of the

> liver, copd, hep-c, and when we went for a liver transplant they

found Cancer

> of the liver. He was a very sick man. I have moved to Kennedale

tx. and

> have not been treated as of yet. I take Milk Thistle and a bunch

of

> vitamins. I haven't had any symptoms other than being tired. I

work hard

> and try to stay as active as I can. Would love to know more about

this

> illness. I have been through a lot with my husband and know what

to look

> for. My sister just found out last month that she has it too. We

have heard

> of some experimental testing. Do you know anything about it?

Would love to

> hear something. Thanks, Pam

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Good morning everyone..How are you all doing???? I am doing ok..The hubby is coming home today so I have a few things to do around here before he gets back..Last night I was just exhausted..Been really busy all week though so last night I went to bed early and feel pretty good so far but I know by the end of the day I'll be tired again..Hey if the Hep C Dr. said my Hep is unnoticable how come I still have pain in my right side and get worn out so quick?? I guess that means it's time for another blood test..I think I'll wait about a week or so though..I am so tired of Drs..Been seeing so much of them for the past 2 years...Hope everyone has a great weekend!!

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. Sounds like a lot to deal with all at once! My name is Dave, I am 48 (for a few more days) and I was diagnosed with hepc a couple of years ago. I went on the treatment and have been undetectable for a year (I completed treatment 6 mos ago). The next step I would say would be a liver biopsy to determine what liver damage, if any has already occurred and a PCR to determine the amount of virus, they measure by units per ml. There is help available for people who cannot afford the treatment if you were interested in exploring that. The sides can be unpleasant, some people handle them better than others. I was sick for the first couple of weeks and then got a little better, suffering from fatigue most of the time and the "flulike" symptoms off and on. I was on a 48 week treatment. Good luck, whatever you decide and please keep us posted. Some of us have completed treatment, some have chosen no treatment, or cannot take the current treatment. So however you decide to handle this you will find kindred spirits here in the group. We support each other through the good and the bad. -dz-

kissaberry wrote:

HELLO, Well I dont know where to begin.. But I will say that I just found out yesterday that I have tested HEPATITIS C positive, now what do I do. Some history, I have been taking Synthroid for Hypothyroidism for three years, and the Dr can never get my level right, I have COPD ( chronic obstructive pulmonary disease ), I was put on Ativan 1mg 3 times a day for panic disorder, I am now withdrawing off of that, Im now down to 1/2 mg daily, let me tell you thats been hell....lol I have had a Hysterectomy, so I take hormone replacement in the form of a shot every thirty days, well three months ago, my Dr. changed the medicine to straight ESTROGEN, AND LET ME TELL YOU THAT HAS REALLY MESSED ME UP, ITS BEEN CHANGED FOR THREE MONTHS, AND IN THAT THREE MONTHS i HAVE BEEN SO SICK, SEVERE DIZZINESS WHERE i CANT EVEN WALK, NAUSEA TO BEAT ALL , AND SEVERE MIGRAINES, AND NOW MY APPETITE IS GOING. I wonder if this new hormone injection has anything to do with my onset of new symptoms, this is why I got checked for the Hepatitis C. So now where do I go from here, am I dying, if so when, I have to go see some kind of liver specialist. Im new to this and Im so scared, Im 37, have four children....20,19,18,14 and 1 grandaughter age one. I hope anyone that reads this understands it. Any response would be greatly appreciated. Thank you, P.S. I in no way would ever be able to afford treatment, even if I could I dont think I could live through it with the side effects.

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Sharon yes the temp does drop to the low 70's here too..I'm not lifting anything today..I did straighten up my house and spary off the dog poop outside in her pen..Then I thought I smelled like it so I had to take a bath.LOL...Sorry to hear you feel so bad but tx does do that at times..I never knew when it would hit me hard and when it wouldn't..Hey we haven't gotten any rain here in the past few days have you?? My mother-in-law lives near Beaumont and said the other day they got like 2 inches in an hour..Glad I wasn't there..Get you some rest today...I'll be in touch..

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Hi Jan, don't lift anything today, OK. I did my shot last night and for some reason I feel like I was hit by a car. So I'm laying low today. Thank God I only have 5 more shots. Have you gotten a north wind there. It's getting down to the low 70's at night here and even when it's in the 90's there is actually a breeze. I think fall is coming.

Sharon

Jannewilms43@... wrote:

Good morning everyone..How are you all doing???? I am doing ok..The hubby is coming home today so I have a few things to do around here before he gets back..Last night I was just exhausted..Been really busy all week though so last night I went to bed early and feel pretty good so far but I know by the end of the day I'll be tired again..Hey if the Hep C Dr. said my Hep is unnoticable how come I still have pain in my right side and get worn out so quick?? I guess that means it's time for another blood test..I think I'll wait about a week or so though..I am so tired of Drs..Been seeing so much of them for the past 2 years...Hope everyone has a great weekend!!

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Jan you said you going do what the Dr says & rest. House work will wait or do I have to go & kick in the butt.

Terry

Jannewilms43@... wrote:

Good morning everyone..How are you all doing???? I am doing ok..The hubby is coming home today so I have a few things to do around here before he gets back..Last night I was just exhausted..Been really busy all week though so last night I went to bed early and feel pretty good so far but I know by the end of the day I'll be tired again..Hey if the Hep C Dr. said my Hep is unnoticable how come I still have pain in my right side and get worn out so quick?? I guess that means it's time for another blood test..I think I'll wait about a week or so though..I am so tired of Drs..Been seeing so much of them for the past 2 years...Hope everyone has a great weekend!!

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Terry I will put boots on my size 5 and be right there to join you.. Fluffy. Re: [ ] WHERE DO I GO FROM HERE Jan you said you going do what the Dr says & rest. House work will wait or do I have to go & kick in the butt. Terry Jannewilms43@... wrote: Good morning everyone..How are you all doing???? I am doing ok..The hubby is coming home today so I have a few things to do around here before he gets back..Last night I was just exhausted..Been really busy all week though so last night I went to bed early and feel pretty good so far but I know by the end of the day I'll be tired again..Hey if the Hep C Dr. said my Hep is unnoticable how come I still have pain in my right side and get worn out so quick?? I guess that means it's time for another blood test..I think I'll wait about a week or so though..I am so tired of Drs..Been seeing so much of them for the past 2 years...Hope everyone has a great weekend!!

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Terry and ..... I will put boots on my size 6 and be joining you

guys. -dz- That was a sweet thing to do... I am sure she loved the

surprise and the pup. ;o Jan here come 2 more cajun queens and one cajun

King.. LOL.... Sharon. I am sorry to hear your shot beat you down. It

happens like that.... Sometimes it just seems worse. Try to rest and

drink lots of water. I'm thinking of you girl..... . Thanks for the

info: you will be OK hon. It is terrible when you first get the

diagnosis. I was diagnosed in 1994.. My LFT'S were always high and my

Dr. just did the test to rule out hep c. He never thought I had it. When

it came back that I did I had to have the Riba test. That is the one

that confirms the diagnosis. I thought I was dying... I cried all the

time and was embarrassed to tell any one. People looked at you back then

as if you had the plague. My so called best friend backed away and to

this day I don't hear from her.. Don't want to either. You will go thru

a lot of mixed emotions . Thank God for the people in this group...

They share a lot of very good info: that was not available to me at the

time. I don't know if I got it in the 60's, 70's or 1981... I had

transfusions way back when. I just had more transfusions in May when I

was hospitalized. Take one day at a time and we and most people in a

support group will help you cope.... I myself can never do any more

interferon type of treatment. I didn't have luck with it because it

messed my blood count up and I almost checked out because of my rare

bleeding disorder. I can never have a transplant either because of my

bleeding problem. That is why we kind of ham it up a bit out here.. To

keep the mind off of it sometimes. When we need each other for support

we are always here for each other. You came to the right place . Ask

whatever it is that you need to and someone here will have an answer, or

find one for you. Have a Super Week-End everyone!!!!!! Drive Careful and

have a good holiday... :o

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

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  • 5 years later...
Guest guest

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?

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Guest guest

Get the DASH diet book and use it like your life depended on it. I

assume your health care team has already mentioned this.

Get the pathology report on your adrenal that was removed for you and

your family's records. Send a copy to us as well.

I assume you did not have AVS studies before surgery?

Read my article on the evolution of PA in our files and take to all in

your health care team.

You most likely have bilateral hyperplasia and further surgery will

result in having Addision's which you want to avoid if at all possible.

So work on the DASH and tell us all other meds you are taking.

Where are you located?

On Mar 25, 2008, at 8:02 PM, ipscalifornia wrote:

> 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).

As you can see from other stories here you have had PA since before

your K was low.

> 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.

What meds were used?

Most don't work in PA as you will note in my article.

> 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.

How were you 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.

Maxizide will lower K esp if you still have PA which is the case from

the results below.

>

> I wasn't that lucky.

If you had AVS before surgery that documented that the the cause of the

PA was the side of the tumor you were indeed unlucky.

If you did not have AVS you were mismanaged in our group's (and most

world class experts) opinion.

> 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?

You need to see someone who is an expert in PA. IF YOU CAN TELL ME

WHERE YOU ARE I MAY BE ABLE TO FIND SUCH AN EXPERT.

>

> Jan

>

>

May your pressure be low!

CE Grim BS, MS, MD

High Blood Pressure Consulting

Specializing in Difficult to Manage High Blood Pressure

Consult the following at for details

bloodpressureline

hyperaldosteronism

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