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Re: JAM's Story ?

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Hi, JA

Welcome to the club!

Can you tell us more about your family history? It

seems you expect to develop high blood pressure. Are

there also strokes in your family? Are they in the

same branch of the family? What did the older family

members die of? Are you aware of any other family

members with low potassium?

There are certain types of Primary Aldosteronism that

run in families, although they are uncommon.

You are certainly fortunate to have a diagnosis so

close to developing your aldosteronism. Many of us

wait for ten years or longer.

I would be interested to hear what Dr. Grim's response

is to the idea of not blocking aldosterone. I don't

understand why your doctor proposes that, but I'm not

a doctor. In my own experience, unblocked

hyperaldosterone causes a lot of trouble, including

uncontrollable hypertension and stiffened muscle

fiber. In my case, this led to heart failure despite

over 30 different trials of medication for

hypertension--including Norvasc, which like all the

others did me no good. Spironolactone is the only

hypertension medication that has ever affected my

blood pressure, and I didn't have the privelege of

trying it until I got heart failure.

From what I understand, this lack of responsiveness to

most blood pressure medications (other than

Spironolactone or Inspra) is one of the distinguishing

characteristics of Conn's. I hope you and your doctor

will think twice about this.

Warmly,

Pam

--- ja m <ja_m9@...> wrote:

>

>

> Hi again to all !

>

> My hyperaldoteronism probably started about 3

> yrs ago. I had a couple fo trips to

> Urgent Care with dizziness and chest pains as

> complains at that time. Chest X-rays

> are negative, EKGs are normal. Only thing that was

> suspicious on my lab results

> was a potassium of 3.0 mmol/L. Doctors at Urgent

> Care just give me potassium

> capsules and I felt fine after that. Though my

> blood pressure was still in 140s/mid 80s.

>

> My second visit to our Urgent Care ( I also work

> as a med tech on the same hosp ).

> they did the same stuff, gave me potassium

> tablets. But I was still hyperventilating,

> feeling dizzy, and having chest pains. I knew the

> potassium ingestion in no longer

> working so I had to beg my doctor to give me some

> 5mg of Norvacs which she did.

> My Doctor had a suspicion then that I may have a

> condition called Conn's Syndrome.

>

> I remember when I was in school, I always find

> Conn's Syndrome, 's Disease,

> Cushing's syndrome to be in one chapter of our

> books. Never thought one day I'll have

> one of these extra " special " syndromes.

>

> My doctor referred me to a Endocrinologist. I

> had a 24hr urine collection for aldosterone

> after 72hr of at least 200mEql NaCl ingestion to

> suppress most of the hormones. Serum

> aldosterone was twice as high as the normal value.

> Renin, expected to be low, was

> normal. Urine aldosterone was surprisingly low.

> Even lower than the assay range of

> our machine. It was totally suppressed by my NaCl

> intake for 3days.

>

> Going to Radiology was my next agenda. CT scan

> was performed. They saw almost

> 1cm of mass that could possibly be an adenoma.

> But normal people can also have

> such growth in their adrenal glands and not

> suffer from Conn's.

>

> So my second visit to Radiology is for an

> Adrenal Vein Sampling. Is it gonna hurt ?

> Will they use anethesia aside from being CT guided

> ? I used to perform femoral

> puncture and I'm fully aware of the risk

> involved. I hope this procedure would be

> painless and there'd be no after effects.

>

> I'm still hesitating to have surgery because I

> know 3-5 yrs from now I'm gonna have

> high BP anyway due to heredity. My doctor doesn't

> wanna prescribe me drugs to

> suppress aldosterone yet. She's hoping that

> increasing my Norvacs to 10mg can

> still control my BP. Is Inspra better than Spiro ?

>

> Thanks again ....

>

> JAM

>

>

> ---------------------------------

> Do you ?

> - Helps protect you from nasty viruses.

=====

" I'd rather learn from one bird how to sing, than to teach ten thousand stars

how not to dance. "

__________________________________________________

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>

> JAM

>

.. My endocrinologist also put me on Norvasc rather than spiro,

preferring to lower the blood pressure, and avoid the side effects.

Eventually went to spiro, as only way to control blood pressure and

keep potassium in bounds. Now on Inspra. Blood pressure control

without the side effects of spiro. Your doctor may have chossen not

to put you on Inspra because of the cost. The only downside of the

drug seems to be the cost. Wayne

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wayne what sides are u having with inspra and what dose did u start with.

my dr stared me at 25 mlg .

i was on 100 mlg of spero.

can u tell me your doses plz

Thanks

Mark

Re: JAM's Story ?

> > JAM> . My endocrinologist also put me on Norvasc rather than spiro, preferring to lower the blood pressure, and avoid the side effects. Eventually went to spiro, as only way to control blood pressure and keep potassium in bounds. Now on Inspra. Blood pressure control without the side effects of spiro. Your doctor may have chossen not to put you on Inspra because of the cost. The only downside of the drug seems to be the cost. Wayne

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Hi Mark

I was on 150mg daily of Spiro, and now 200mg of Inspra. I have been under the

impression that it takes a little more Inspra to equal Spiro. And it has for

me. Grapefruit juice every couple of days helps too. My doctor has had patients

with what looks like just the beginning of high BP and has recommended adding a

glass of grapefruit juice to their diet every couple of days and has prevented

the start of meds. It makes a lot of BP meds work better, I haven't learned why.

Hope this helps, Randy

<>< May we all be DASHing! ><>

wayne what sides are u having with inspra and what dose did u start with.

my dr stared me at 25 mlg .

i was on 100 mlg of spero.

can u tell me your doses plz

Thanks

Mark

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Thanks randy

im on a bb and they say its not a good think for grapfruit it icreases the efect of the meds and could drop the b\p to much.

and again

Thanks

Mark

Re: Re: JAM's Story ?

Hi MarkI was on 150mg daily of Spiro, and now 200mg of Inspra. I have been under the impression that it takes a little more Inspra to equal Spiro. And it has for me. Grapefruit juice every couple of days helps too. My doctor has had patients with what looks like just the beginning of high BP and has recommended adding a glass of grapefruit juice to their diet every couple of days and has prevented the start of meds. It makes a lot of BP meds work better, I haven't learned why.Hope this helps, Randy<>< May we all be DASHing! ><> wayne what sides are u having with inspra and what dose did u start with.my dr stared me at 25 mlg .i was on 100 mlg of spero.can u tell me your doses plzThanks Mark

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In a message dated 2/9/05 6:24:31, spirlhelix@... writes:

Renin, expected to be low, was

>    normal. Urine aldosterone was surprisingly low.

> Even lower than the assay range of

>   our machine. It was totally suppressed by my NaCl

> intake for 3days.

The very low urine aldo suggests you do no not have primary aldo. More likely Liddles syndrome or apparant Mineralocotricoid effect.

I would not recommmend surgery until this is clear as surgeryy will not help either-unless the surgery is taking out both kndheys and transplantin one that does not have these problems.

Again the low urine aldo means it is very unlikely you have Primalry aldo.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

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In a message dated 2/9/05 4:21:08, ja_m9@... writes:

My doctor referred me to a Endocrinologist. I had a 24hr urine collection for aldosterone

  after 72hr of at least 200mEql NaCl ingestion to suppress most of the hormones. Serum

  aldosterone was twice as high as the normal value. Renin, expected to be low, was

   normal. Urine aldosterone was surprisingly low. Even lower than the assay range of

  our machine. It was totally suppressed by my NaCl intake for 3days.

 

Were you on BP meds or any other medss at the time.

I would repeat the urine aldo before the adrenal vein I think.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

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In a message dated 2/9/05 16:17:04, thewhiningpplz@... writes:

I was on 150mg daily of Spiro, and now 200mg of Inspra.  I have been under the impression that it takes a little more Inspra to equal Spiro.  And it has for me.  Grapefruit juice every couple of days helps too. My doctor has had patients with what looks like just the beginning of high BP and has recommended adding a glass of grapefruit juice to their diet every couple of days and has prevented the start of meds. It makes a lot of BP meds work better, I haven't learned why.

Hope this helps,  Randy

If this is true he needs to publish it. I know of no trials of GFJ pon BP.

May your pressure be low!

Clarence E. Grim, BS (Chem/Math), MS (Biochem), MD, FACP, FACC, FAHS

Clinical Professor of Medicine and Epidemiology

Director, Hypertension Diagnosis and Treatment Center

Board Certified in Internal Medicine, Geriatrics and Hypertension

Published over 220 scientific papers, book chapters and 220 abstracts in the area of high blood pressure epidemiology, physiology, endocrinology measurement, treatment and how to detect curable causes.

Listed in Best Doctors in America

Specializing in Difficult to Control High Blood Pressure and the History and Physiology of High Blood pressure in the African Diaspora

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Mark:

Was placed on 50 mg dose of Spiro, and had excellent blood

pressure and potassium control. Side effects was breast enlargement

and soreness. Went to Inspra the start of last year, 50 mg and spiro

side effects disappeared after a few months. No side effects on

Inspra, except maybe gaining a few pounds. Wayne

> wayne what sides are u having with inspra and what dose did u

start with.

> my dr stared me at 25 mlg .

> i was on 100 mlg of spero.

> can u tell me your doses plz

> Thanks

> Mark

>

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