Val's story (con't)

[Guest guest]

I finally had my endo appointment today. I think she's a keeper. She went

through all the possible adrenal issues - pheo, Cushing's, and PA; and,

based on my tests, ruled out everything except PA. She's obviously not

terribly experienced in PA but she was not put off at all with my " Val's

story " narrative and stack of tests. She was respectful of my knowledge

(THANK YOU, dear Dr. Grim). She really latched onto Dr. Grim's paper and

seemed happy to have it. She's going to give me an Inspra trial as soon as

she figures out how to do it. She said that if the meds for PA don't work,

then she'd send me on to a cardiologist and nephrologist.

She mentioned a couple other possible tests - renal ultrasound and

salt-loading. I told her I'd be terrified of a salt loading test unless it

was supervised. If you remember, I've had a couple episodes of paralysis.

Salt sends my anxiety into overdrive.

My Vit D is low and she wants me to supplement that.

She gave me Ativan and said she really wants me to take it for a couple of

weeks to calm things down. My BP was 190+/100+ (too nervous to remember) in

her office. That's consistent with what I measured before I went in. She's

not resistant to my taking Armour at some point. I told her I'd quit the

transdermal estradiol because it intensifies anxiety. She wants me to stay

off that for a while, too, and later, gradually re-introduce one thing at a

time. I believe she really does understand where I've been, where I am, and

where I want to go.

Needless to say, I am relieved. The quality of my life has been awful.

Val

[Guest guest]

Val,

There are two type of salt loading tests:

- *Oral salt loading.* You'll follow a high-sodium diet for three days

before your doctor measures aldosterone and sodium levels in your urine.

- *Saline loading (aka saline suppression).* Your aldosterone levels

are tested after sodium mixed with water (saline) is infused into your

bloodstream for several hours.

Rather than an oral salt loading test, perhaps a saline suppression test

would be more appropriate for you. This takes about 4 hours and is done

under medical supervision the entire time in your doctor's office or another

medical facility. The challenge is finding someone who is qualified to

administer it.

By the way, Dr. Grim along with Dr. Weinberger et al invented the saline

suppression test.

-Jeff

On Thu, Mar 6, 2008 at 6:40 PM, Valarie <val@...> wrote:

> I finally had my endo appointment today. I think she's a keeper. She

> went

> through all the possible adrenal issues - pheo, Cushing's, and PA; and,

> based on my tests, ruled out everything except PA. She's obviously not

> terribly experienced in PA but she was not put off at all with my " Val's

> story " narrative and stack of tests. She was respectful of my knowledge

> (THANK YOU, dear Dr. Grim). She really latched onto Dr. Grim's paper and

> seemed happy to have it. She's going to give me an Inspra trial as soon as

> she figures out how to do it. She said that if the meds for PA don't work,

> then she'd send me on to a cardiologist and nephrologist.

>

> She mentioned a couple other possible tests - renal ultrasound and

> salt-loading. I told her I'd be terrified of a salt loading test unless it

> was supervised. If you remember, I've had a couple episodes of paralysis.

> Salt sends my anxiety into overdrive.

>

> My Vit D is low and she wants me to supplement that.

>

> She gave me Ativan and said she really wants me to take it for a couple of

> weeks to calm things down. My BP was 190+/100+ (too nervous to remember)

> in

> her office. That's consistent with what I measured before I went in. She's

> not resistant to my taking Armour at some point. I told her I'd quit the

> transdermal estradiol because it intensifies anxiety. She wants me to stay

> off that for a while, too, and later, gradually re-introduce one thing at

> a

> time. I believe she really does understand where I've been, where I am,

> and

> where I want to go.

>

> Needless to say, I am relieved. The quality of my life has been awful.

>

> Val

>

>

[Guest guest]

Glad to hear we are helping.

Get your butt on Inspra or spiro ASAP with those BPs.

I would start spiro 100 per day and see what happens in 2 weeks.

Need twice that for Inspra and recall it costs 10 x a much.

Keep us posted.

On Mar 6, 2008, at 5:50 PM, datawrhsdoc wrote:

> .

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

[Guest guest]

Yes, I've read about the two tests. I wouldn't even consider the salt

loading because of my reaction to salt - anxiety & paralysis. I've gotten

to where I'm afraid to put anything in my mouth, but get hypoglycemic if I

put off eating too long. How I hold onto my weight is a head scratcher.

I didn't realize Dr. Grim had invented the saline suppression test. I am so

proud to know him. I Pubmed searched him the other day and came up with

several pages of hits.

And I'm so terribly grateful to everyone here. You have saved my life. I'm

very emotional tonight about the relief I feel. I've been searching a long,

long time.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of datawrhsdoc

Val,

There are two type of salt loading tests:

- *Oral salt loading.* You'll follow a high-sodium diet for three days

before your doctor measures aldosterone and sodium levels in your urine.

- *Saline loading (aka saline suppression).* Your aldosterone levels

are tested after sodium mixed with water (saline) is infused into your

bloodstream for several hours.

Rather than an oral salt loading test, perhaps a saline suppression test

would be more appropriate for you. This takes about 4 hours and is done

under medical supervision the entire time in your doctor's office or another

medical facility. The challenge is finding someone who is qualified to

administer it.

By the way, Dr. Grim along with Dr. Weinberger et al invented the saline

suppression test.

-Jeff

[Guest guest]

Hi Val,

I had a similar experience with Thyroid troubles. Because you know

you're not crazy, you'll keep searching and you will find the answers

even if it takes a long time. When I went hyperthyroid I went to the

doc with 190/126, lost 20 lbs in one month and could not sleep. She

told me I had too many kids, too much stress and needed

antidepresents and beta blockers. Oh and get more exercise, although

at the time I was running 20 - 30 miles per week. Three doctors

later I went to my midwife in dispair who listend to my symptoms and

said I likely had a thyroid problem and told me to see and Endo. I

had graves!

Keep searching. I've had a lot of luck with alternative medicine on

some things and no luck on others.

>

> Where to start.

>

> My visit to Mayo was quite a dismal experience. I felt very

confronted from

> the moment I walked in. The physician thumbed through my records

and a

> stack of records my doc had sent. On the front of what my doc had

sent, he

> had written in blue felt-tip pen " OK RECON Primary Aldo Be sure

Stanton is

> in town. WFY 5/23/08 " (Stanton is the AVS radiologist.) I have

that stack

> of records.

>

> Finally, he came across my aldo/renin results and said, " Ahh, here

it is;

> renin is too high. There is no way you can have an adenoma with a

renin

> that high. It should be below 0.5. " My renin was 1.35 and aldo

was 28. On

> low sodium ( about 30 - 75 - where I think I was at the time),

normal renin

> is 4.09 - 7.73. Three years ago, on more normal (but not excess)

sodium, my

> renins were 0.9 and 0.4. ARRs were 21 and 33. I asked the

physician why

> the divergence in renin from three years ago to now and he said he

didn't

> know.

>

> The physician repeated several times that he is the expert. I

could not

> talk, especially given my brain malfunction right now. He told me

there are

> no symptoms of primary aldosteronism other than those of low

potassium. If

> there are no symptoms, then anything I was experiencing was

invalid. I

> tried to talk about my sweats, paralysis, sodium intolerance, etc.

I

> learned that I came for an aldosterone consultation and that was

the only

> thing that would be addressed. I have compiled our members'

comments about

> anxiety, sweats, etc., in the files section of this group. I

showed him the

> comments (without names). He said that anything you all say is not

accurate

> unless it references low potassium. He also said that surgery will

not do

> anything spiro doesn't do. According to the experiences of people

on this

> list, that may not be accurate.

>

> Why my husband and I made that expensive and difficult trip is still

> escaping me. If renin = 0.5 is the magic number, why was my

appointment

> approved?????

>

> My BP was 152/87. It was measured with an automatic device that

measures it

> six times and then gives the average. That was pretty much in line

with

> what I'd been getting since being off spiro but controlling sodium.

>

> He looked at the MRI I brought on CD. The left adrenal looked good

but he

> questioned the right one as it was a bit fuzzy. Then he said MRI's

are just

> not very good for detecting an adenoma. He did not ask for a CT.

>

> He saw a letter from the cardiologist to Dr. Grim and asked, " Who

is Dr.

> Grim? " I could not tell whether he actually knew who he is or

not. (Note:

> Dr. Grim had referred me to the cardiologist, hence his name on a

letter).

>

> Then, he decided he needed new tests so he ordered renin, aldo, K,

urinary

> Na, etc. When I went back the next day, only renin, K and urinary

Na had

> come back. The only instruction I had was to be off spiro for six

weeks.

> Nothing was instructed about sodium. Results were as follows:

>

> 1) Urine Na = <7 (40 - 150) Below it says " Too low to quantitate "

> 2) Renin = 1.85 (no normal levels included - will have to get) I

think

> normal for that level of urinary Na is about 9 - 24

> 3) K = 3.8 (taken with tourniquet and clenched fist) I was on 20

mEq K +

> 3,000 mg in diet.

>

> I was on HCTZ which, in addition to low sodium, tends to increase

renin. I

> don't understand why my lack of urinary sodium seemed to be totally

missed

> as a factor in the renin level. He said the average Minnesotan's

urinary Na

> is 150 and that he'd never seen such a low one. I would think

that, as an

> expert, he had seen many people control their sodium intake as well

as I do.

>

>

> I believe the whole concept of ARR blows up if the patient is on a

low

> sodium diet. Therefore, the validity of the ARR is in question

unless

> urinary sodium is known.

>

> My return visit the next day had a whole different atmosphere. My

husband

> was with me.

>

> He said I have " hypertension with probable inappropriate aldosterone

> secretion, " the cause of which is unknown. He agreed with me that

HCTZ is

> inappropriate. I'd been on HCTZ for six years. I even took Actos

and

> metformin for a while. My glucose dropped to normal after only two

weeks on

> spiro.

>

> I've read and read about this and have yet to find anything about

renin

> having to be below 0.5. In everything I've read, the

renin/aldosterone

> ratio is the one they look at for a first pass. In the Endocrine

Society's

> " Case Detection, Diagnosis, and Treatment of Patients with Primary

> Aldosteronism: An Endocrine Society Clinical Practice Guideline "

that was

> just published, I can find no mention of renin having to be below

0.5. The

> physician I saw was one author of those guidelines.

> http://www.ncbi.nlm.nih.gov/pubmed/18552288?ordinalpos=1

> <http://www.ncbi.nlm.nih.gov/pubmed/18552288?

ordinalpos=1 & itool=EntrezSystem

> 2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum>

>

& itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSu

m

> or

> http://tinyurl.com/583w33

>

> My aldo was not back when I left. I was so distressed at the

inhospitable

> atmosphere that I didn't much care where it was. As much as some

would like

> to deny it, sick people are human too.

>

> I got the remainder in the mail. No urinary potassium was done.

> Creatinine 0.8 (0.6-1.1) (Down from 1.1 when I'd been on 150 mg

spiro)

> Aldosterone 13 (<21)

> Urinary aldo 19 (2 - 20)

>

> For now, all I can do is take spironolactone, stay below 800 mg/day

Na, and

> juggle the daily K/Na problem. I've been horribly retaining water

after

> being off spiro for six weeks. I've gone back on estrogen, too.

I've been

> crying a lot and think low E is part of the problem. My nerves are

still

> raw but not as bad as last Fall and Winter. I think the 14 weeks

of spiro

> did some heart healing as the arrhythmias have more or less

stopped. I

> still have frequent sweats and am " brittle " (my word for anxious).

I've

> been up every two hours at night with sweats and urination.

>

> If things do not turn around after a sufficient time back on spiro,

I am

> going to seek alternative or complimentary help. It is not normal

to feel

> constantly brittle like I do. I've lived with me for a long time

and this

> is not the normal me.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of Clarence

Grim

>

> Sorry to hear about the visit to Mayo. But informing our group is

> important I would think.

>

> Most sing their praises but they were probably not as well prepared

> as you were.

>

>

>

>

>