Re: Got a call to go get another test done

May 8, 2012

My guess is like many of us she has not had K tested right.

> > > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > Even with this: 11 deoxycortisol 99 ng/dl

(<=62) HIGH

> > > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > 11-Deoxycortisol (Compound S) is the

immediate precursor of

> > > > > > > > > > > > > > > > > cortisol:

> > > > > > > > > > > > > > > > > > > 11 beta-hydroxylase

> > > > > > > > > > > > > > > > > > >

11-deoxycortisol--------------------------->cortisol

> > > > > > > > > > > > > > > > > > > and is typically increased when

adrenocorticotropic hormone

> > > > > > > > > > > > > > > > > (ACTH) levels are increased (eg, Cushing

disease, ACTH-producing

> > > > > > > > > > > > > > > > > tumors) or in 11 beta-hydroxylase deficiency,

a rare subform of

> > > > > > > > > > > > > > > > > congenital adrenal hyperplasia (CAH). In CAH

due to 11 beta-

> > > > > > > > > > > > > > > > > hydroxylase deficiency, cortisol levels are

low, resulting in

> > > > > > > > > > > > > > > > > increased pituitary ACTH production and

increased serum and urine 11-

> > > > > > > > > > > > > > > > > deoxycortisol levels.

> > > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > I stand by my original post unless you

want to screw around with

> > > > > > > > > > > > > > > > > it a couple more years!

> > > > > > > > > > > > > > > > > > >

ÃƒÆ'Ã†'Ãƒâ€šÃ‚Â¢ÃƒÆ'Ã‚Â¢ÃƒÂ¢Ã¢â€šÂ¬Ã…Â¡Ãƒâ€šÃ‚Â¬ÃƒÆ'Ã¢â‚¬Å¡Ãƒâ€šÃ‚Â¦.

> > > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > --- In

> > > > >

> > > >

> > >

> >

>

May 8, 2012

, all your symptoms are very familiar to me. Headaches for years, weakness, fatigue, heart palpitations and leg cramps. I fell several times because I was so unsteady on my feet and lightheaded to dizzy to out and out brain not functioning properly. Words would be gone though I knew what I wanted to say, but had to find a simple word to replace a less commonly used "big" word. Handling money? Forget it. At my worst I couldn't make change or balance my checkbook if my life depended on it. Feelings of paralysis, where I knew that I wasn't really paralyzed but felt like it was impossible to get up from a chair, or lift my arms over my head. I believe most all of it was due to low potassium coupled with too much sodium. Even though I took 80mQ of K a day my body leeched it faster than I could get it in me. Spiro stopped the leeching

and now I will only get any of those symptoms if I have neglected to get enough natural K (only have pills for emergency) in me. I keep Na in the 1000 to 1500 range. If I go to 1500 I don't feel as well as I do it it's lower, so I keep a head count up to 1000 and stop Na for the day. It gives me leeway for error.Dianne, F-69, bi-lateral adenomas, CKD, 75mg Spiro, 37.5mg Atenolol, Dashing and BP in the 120 to 135/65 to 72 range.

yes, i felt like I had the flu but not the respiratory issues (weak, fatigue and heart palpitations), also off balance but not enough that I could not walk. Lightheaded (like your head is not attached to your body, floating). I would turn a corner while walking a patient (I am a physical therapist) and I would fall into the wall sometimes. Also getting up from a chair I would lose my balance. That has improved and the lightheaded feeling is not as frequent, but I do get dizzy at times. As for thinking, since this started, I have the brain fog. I have such terrible word finding problems, like every conversation. People at work constantly finish my sentences for me.

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > Even with this: 11 deoxycortisol 99 ng/dl (<=62) HIGH

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > 11-Deoxycortisol (Compound S) is the immediate precursor of

> > > > > > > > > > > > > > > cortisol:

> > > > > > > > > > > > > > > > > 11 beta-hydroxylase

> > > > > > > > > > > > > > > > > 11-deoxycortisol--------------------------->cortisol

> > > > > > > > > > > > > > > > > and is typically increased when adrenocorticotropic hormone

> > > > > > > > > > > > > > > (ACTH) levels are increased (eg, Cushing disease, ACTH-producing

> > > > > > > > > > > > > > > tumors) or in 11 beta-hydroxylase deficiency, a rare subform of

> > > > > > > > > > > > > > > congenital adrenal hyperplasia (CAH). In CAH due to 11 beta-

> > > > > > > > > > > > > > > hydroxylase deficiency, cortisol levels are low, resulting in

> > > > > > > > > > > > > > > increased pituitary ACTH production and increased serum and urine 11-

> > > > > > > > > > > > > > > deoxycortisol levels.

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > I stand by my original post unless you want to screw around with

> > > > > > > > > > > > > > > it a couple more years!

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > ÃƒÆ’Ã†'Ãƒâ€šÃ‚Â¢ÃƒÆ’Ã‚Â¢ÃƒÂ¢Ã¢â€šÂ¬Ã…Â¡Ãƒâ€šÃ‚Â¬ÃƒÆ’Ã¢â‚¬Å¡Ãƒâ€šÃ‚Â¦.

> > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > --- In

> > >

> >

>

May 8, 2012

Stacey, your symptoms are eerily like mine. What happened just before you had the " flu " and your BP shot up? Where had you been in the days/weeks prior? The fact that it all came on suddenly should be of great interest to your docs. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StaceyF yes, i felt like I had the flu but not the respiratory issues (weak, fatigue and heart palpitations), also off balance but not enough that I could not walk. Lightheaded (like your head is not attached to your body, floating). I would turn a corner while walking a patient (I am a physical therapist) and I would fall into the wall sometimes. Also getting up from a chair I would lose my balance. That has improved and the lightheaded feeling is not as frequent, but I do get dizzy at times. As for thinking, since this started, I have the brain fog. I have such terrible word finding problems, like every conversation. People at work constantly finish my sentences for me. > >> > > > No, just started one morning. I did not have high blood pressure until then and it went from 120/80 to 160/100 over the next 3 days.> > Any medicine was added after the symptoms all started.

May 8, 2012

That's pretty common I think and maybe there's more to it? I am sure they have explored these things but what about PA being related to an autoimmune issues.

And are there some who have PA but adrenals seem fine, Dr G, or is it just missed or too small at that point in your experience? Are there many set off by previous/other illness?

I know about the lyme connection to autoimmune like issues, but does a different illness seem to set that in motion too according to what we know about it, Val?

Something seems like it sets PA in motion, or more often maybe we just get sick, then get in the system and then discover it's been breweing .....I guess? Because most do not regularly check their BP unless they find out they need to.

From: Valarie <val@...>Subject: RE: Re: Got a call to go get another test donehyperaldosteronism Date: Tuesday, May 8, 2012, 4:17 PM

Stacey, your symptoms are eerily like mine. What happened just before you had the "flu" and your BP shot up? Where had you been in the days/weeks prior? The fact that it all came on suddenly should be of great interest to your docs.

Val

From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StaceyF

yes, i felt like I had the flu but not the respiratory issues (weak, fatigue and heart palpitations), also off balance but not enough that I could not walk. Lightheaded (like your head is not attached to your body, floating). I would turn a corner while walking a patient (I am a physical therapist) and I would fall into the wall sometimes. Also getting up from a chair I would lose my balance. That has improved and the lightheaded feeling is not as frequent, but I do get dizzy at times. As for thinking, since this started, I have the brain fog. I have such terrible word finding problems, like every conversation. People at work constantly finish my sentences for me. > >> > > > No, just started one morning. I did not have high blood pressure until then and it went from 120/80 to 160/100 over the next 3 days.> > Any medicine was added after the symptoms all started.

May 8, 2012

, I think there is so much not known about what sets off what.Â I was acutely aware of my BP as I was on three meds with hyperparathyroidism and after surgery, off all meds for a few years.Â I watched my BP carefully for several years.Â I've heard lots of what Lyme does to the immune system but I'm sure there are other triggers. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Bingham I know about the lyme connection to autoimmune like issues, but does a different illness seem to set that in motion too according to what we know about it, Val? Something seems like it sets PA in motion, or more often maybe we just get sick, then get in the system and then discover it's been breweing .....I guess? Because most do not regularly check their BP unless they find out they need to. From: Valarie <val@...>Stacey, your symptoms are eerily like mine. What happened just before you had the " flu " and your BP shot up? Where had you been in the days/weeks prior? The fact that it all came on suddenly should be of great interest to your docs.From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StaceyF yes, i felt like I had the flu but not the respiratory issues (weak, fatigue and heart palpitations), also off balance but not enough that I could not walk. Lightheaded (like your head is not attached to your body, floating). I would turn a corner while walking a patient (I am a physical therapist) and I would fall into the wall sometimes. Also getting up from a chair I would lose my balance. That has improved and the lightheaded feeling is not as frequent, but I do get dizzy at times. As for thinking, since this started, I have the brain fog. I have such terrible word finding problems, like every conversation. People at work constantly finish my sentences for me.

May 8, 2012

BP is done poorly in most clinics and suspect in some if the usual pressure had been 120/80 and they take one and it is a lot higher they assume they made a mistake and write down 120/80. Then eventually some realizes the BP is really high and actually record it and bam. Sudden onset. As an example my wife and I just finished a study in 50 people taking at least 15 BPs on each. We never recorded a BP of 120/80. So in 1500 ausculated BPs we never got a 120/80. But then I am a suspicious person. CE Grim MDOn May 8, 2012, at 5:12 PM, Bingham wrote: That's pretty common I think and maybe there's more to it? I am sure they have explored these things but what about PA being related to an autoimmune issues. And are there some who have PA but adrenals seem fine, Dr G, or is it just missed or too small at that point in your experience? Are there many set off by previous/other illness? I know about the lyme connection to autoimmune like issues, but does a different illness seem to set that in motion too according to what we know about it, Val? Something seems like it sets PA in motion, or more often maybe we just get sick, then get in the system and then discover it's been breweing .....I guess? Because most do not regularly check their BP unless they find out they need to. From: Valarie <val@...>Subject: RE: Re: Got a call to go get another test donehyperaldosteronism Date: Tuesday, May 8, 2012, 4:17 PM Stacey, your symptoms are eerily like mine. What happened just before you had the "flu" and your BP shot up? Where had you been in the days/weeks prior? The fact that it all came on suddenly should be of great interest to your docs. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of StaceyF yes, i felt like I had the flu but not the respiratory issues (weak, fatigue and heart palpitations), also off balance but not enough that I could not walk. Lightheaded (like your head is not attached to your body, floating). I would turn a corner while walking a patient (I am a physical therapist) and I would fall into the wall sometimes. Also getting up from a chair I would lose my balance. That has improved and the lightheaded feeling is not as frequent, but I do get dizzy at times. As for thinking, since this started, I have the brain fog. I have such terrible word finding problems, like every conversation. People at work constantly finish my sentences for me. > >> > > > No, just started one morning. I did not have high blood pressure until then and it went from 120/80 to 160/100 over the next 3 days.> > Any medicine was added after the symptoms all started.

May 9, 2012

At the time the headache started it was tested in the ER and was 3.1. Sorry no

thumbnail b/c I was answering a question someone asked.

Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low

Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache, new onset HBP, 3

meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d and

Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700 with

supplementation (feel better, but not myself). sx started 3 years ago: brain

fog, fatigue, pain in joints and muscles, exercise intolerence, light headed,

palpitations and above mentioned. Diagnosed with hypogammaglobulinemia and

getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile.

My newest K is 4.4 but do not feel any better with headache, but less cramping

in my legs. Still fatigue and all the other issues.

> > > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > Even with this: 11 deoxycortisol 99 ng/dl

(<=62) HIGH

> > > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > 11-Deoxycortisol (Compound S) is the

immediate precursor of

> > > > > > > > > > > > > > > > > cortisol:

> > > > > > > > > > > > > > > > > > > 11 beta-hydroxylase

> > > > > > > > > > > > > > > > > > >

11-deoxycortisol--------------------------->cortisol

> > > > > > > > > > > > > > > > > > > and is typically increased when

adrenocorticotropic hormone

> > > > > > > > > > > > > > > > > (ACTH) levels are increased (eg, Cushing

disease, ACTH-producing

> > > > > > > > > > > > > > > > > tumors) or in 11 beta-hydroxylase deficiency,

a rare subform of

> > > > > > > > > > > > > > > > > congenital adrenal hyperplasia (CAH). In CAH

due to 11 beta-

> > > > > > > > > > > > > > > > > hydroxylase deficiency, cortisol levels are

low, resulting in

> > > > > > > > > > > > > > > > > increased pituitary ACTH production and

increased serum and urine 11-

> > > > > > > > > > > > > > > > > deoxycortisol levels.

> > > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > I stand by my original post unless you

want to screw around with

> > > > > > > > > > > > > > > > > it a couple more years!

> > > > > > > > > > > > > > > > > > >

ÃƒÆ'Ã†'Ãƒâ€šÃ‚Â¢ÃƒÆ'Ã‚Â¢ÃƒÂ¢Ã¢â€šÂ¬Ã…Â¡Ãƒâ€šÃ‚Â¬ÃƒÆ'Ã¢â‚¬Å¡Ãƒâ€šÃ‚Â¦.

> > > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > --- In

> > > > >

> > > >

> > >

> >

>

May 9, 2012

I have not had them tested correctly. I bring them the handout to do it right

and sometimes they listen. One time, I explained it all and how important it

was to not get it out fast and such and she shook the blood instead of slowly

inverting it. Tested as 4.7, then the next day done at different lab and it was

4.4.

> > > > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > > Even with this: 11 deoxycortisol 99

ng/dl (<=62) HIGH

> > > > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > > 11-Deoxycortisol (Compound S) is the

immediate precursor of

> > > > > > > > > > > > > > > > > > cortisol:

> > > > > > > > > > > > > > > > > > > > 11 beta-hydroxylase

> > > > > > > > > > > > > > > > > > > >

11-deoxycortisol--------------------------->cortisol

> > > > > > > > > > > > > > > > > > > > and is typically increased when

adrenocorticotropic hormone

> > > > > > > > > > > > > > > > > > (ACTH) levels are increased (eg, Cushing

disease, ACTH-producing

> > > > > > > > > > > > > > > > > > tumors) or in 11 beta-hydroxylase

deficiency, a rare subform of

> > > > > > > > > > > > > > > > > > congenital adrenal hyperplasia (CAH). In CAH

due to 11 beta-

> > > > > > > > > > > > > > > > > > hydroxylase deficiency, cortisol levels are

low, resulting in

> > > > > > > > > > > > > > > > > > increased pituitary ACTH production and

increased serum and urine 11-

> > > > > > > > > > > > > > > > > > deoxycortisol levels.

> > > > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > > I stand by my original post unless you

want to screw around with

> > > > > > > > > > > > > > > > > > it a couple more years!

> > > > > > > > > > > > > > > > > > > >

ÃƒÆ'Ã†'Ãƒâ€šÃ‚Â¢ÃƒÆ'Ã‚Â¢ÃƒÂ¢Ã¢â€šÂ¬Ã…Â¡Ãƒâ€šÃ‚Â¬ÃƒÆ'Ã¢â‚¬Å¡Ãƒâ€šÃ‚Â¦.

> > > > > > > > > > > > > > > > > > > >

> > > > > > > > > > > > > > > > > > > > --- In

> > > > > >

> > > > >

> > > >

> > >

> >

>

May 9, 2012

Nothing really happened before, it was Christmas break and the kids were home.

A month before that, I hit my head when my 2 year old pulled a chair out from

where I was sitting and when I went back to sit down, no chair, goose egg but no

did not pass out. I wish that my docs found it interesting, I was asked in the

ER if I partied to hard because it was Jan 1 when I went in. I have 5 kids, no

partying going on here. The next comment was, you have 5 kids so you must be

stressed. I said I had the same 5 kids last week and I was fine.

Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago normal. Very Low

Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, headache 24/7, new onset HBP,

3 meds with labile BP. High PTH, high bone ALK phos, need high doses of vit d

and Magnesium to stay in normal range, Diet: salt under 1500 and K+ near 4700

with supplementation (feel better, but not myself). sx started 3 years ago:

brain fog, fatigue, pain in joints and muscles, exercise intolerence, light

headed, palpitations and above mentioned. Diagnosed with hypogammaglobulinemia

and getting monthly IVIG infusion. On spiro 50 mg BID and BP is still labile.

> > >

> > > No, just started one morning. I did not have high blood pressure until

> then and it went from 120/80 to 160/100 over the next 3 days.

> > > Any medicine was added after the symptoms all started.

>

May 9, 2012

Autoimmune is a thought. I have hypogammaglobulinemia which effects antibody

production. THis was found out in the last 3 years search for answers to what

has happened. So the tests for autoimmune disease can be falsely negative

because I do not make many antibodies. True for lyme testing too. I have had 2

negatives on that. There is a connection to new daily persistent headache and

lyme. This is the diagnosis I have for my constant headache.

Also my docs do not believe that it was sudden onset of high BP, but I would

check my BP as I work in the hospital so I was well aware of what it was. They

did not buy it because my family history of hypertension.