Congrats/Thanks/Cookbook info/Info on another low-renin htn disease

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DR. Grim,

Hi and CONGRATS on the Top Physicians Selection!

I saw my endo with my 9 yr old daughter this week - her 24 urine cortisol is on

the low end of normal (don't have exact numbers right now) and urine aldo is in

mid-normal range.

She has also had low plasma renin and low aldo I think renin 1 and aldo 3.

My parents have low renin/low aldo as well.

mom and her mom dx'd with na sensitive htn in 30's

When I first started seeing my endo, one of the first things he thought was CAH

(congenital adrenal hyperplasia) with my high androgens (elevated DHEA and

androstendione along with a few other minor ones).

BUT I am definitely not a " salt-waster " - I have the opposite problem -

" salt-poisoning " we have taken to calling it in my family

No elevations of the precursore hormones that happen with 21-hydroxylase

deficiency. Started sprio for the hirsutism... and immediately the lifelong

post-prandial fatigue, flushing, and malaise stopped (as long as on spiro).

Anyway, after you mentioned a few times that my cortisol is low even on avs, I

went back and dug up more info on CAH - turns out the second most common cause

of CAH (5%-8% of cases) is 11-hydroxylase deficiency.

Causes elevations of DOC and 11-deoxycortisol, which actviate the MC receptor.

Results in hypokalemic metabloic alkalosis, weakness, fatigue, Na+ and fluid

retention, swelling, and may have mild to mod htn.

Sort of a combination of symptoms of conn's, cushings, and addisons... Symptoms

worsen under conditions that cause cortisol increase with inability to produce

sufficient amounts of cortisol , tons of precursor hormones are made etc...

Biochemical profile is low renin, low aldo, low cortisol, high DHEA, high

androstenedione. (just like my results).

Ds SX are caused by MC receptor activation (responds to spiro, but usually use

steroids to suppress the hromone production) and hyperandrogenism.

Confirmation of dx is by ACTH stim.

Asked my endo if it could be that form of CAH - he agreed that it really fits

all abnormal rest results and my weird symptoms. Especially the onset during

infancy/toddlerhood, and the fact that the disease skipped my sisters but

affected two nieces, whose moms are two of my sisters.

Not much info out there on this from of CAH - the vast majority is caused by the

21-hydroxylase deficiency so most research attention and info is focused on that

form, but it seems liek there is a range of clinical phenotypes depending on the

degree of enzyme deficiency.

Thought you might be interested. I'll keep you posted when final test results

are in.

Also wanted to let you know that I have spent several weeks this summer getting

my parents and sister and her family on a TRUE low-NA+ diet.

We are doing the RICE diet - the DASH diet isn't low enough in NA+ for the most

severely affected family members. Thank you so much for mentioning it! My

parents haven't completely switched over to the RICE diet - but are gradually

doing so and meanwhile counting every mg of NA (all those decades on low-Na diet

and not one dr had EVER told my mom the mg levels - they all just said low-salt

with no definition of what that means!

Anyway, my mom is really improving symptomatically. She has had the Na+

sensitive htn for 35 years, eventually developed pulmonary htn, then diabetes,

then 2 mild heart attacks at age 65 (second caused by the stent placed for the

first). She saw her cardiologist a couple days ago, after a month of really

counting mg of sodium, never over 1500 mg a day for a month, often below 1000.

Her cardiologist said she was doing extremely well and that she didn't need to

see her for a year.

Then my mom asked about the RICE diet - the doc got upset at first, thinking it

was some crazy fad diet, then when my mom told her no, it's the Duke University

one - the cardio told her they discontinued that program many years ago because

patients couldn't stay on it! Then the cardio had a staffer pull up info on the

internet, found out the program is still alive and well at DUKE. Finally the

cardio concluded by telling my mom that it wasn't necessary for her to do such a

" difficult diet " because they have drugs they can give her to make her feel

better!!!

OMG!!!!! I told my mom she needs a different doc!!

Mom feels better on 30 days of low sodium than she ahs in many many years!!! I

wish I could afford to send her to the program at DUKE, but we have the program

books and website and stuff and my mom has seen how much better she feels and

how her CHF is dramatically improving already - the whole family has committed

to the RICE Diet. We would never have known about this without you.

Many thanks on behalf of myself and my whole family!!!

Sincerely,

Joyce in Cinci

P.S. Any of you who are on DASH and not doing as well as you like with fatigue

etc, I recommend trying out the RCIE diet (No, it's not just RICE). It is

basically the food pyramid with a focus on whole grains and foods high in

potassium and ultra-low sodium (500- 100omg/day).

The website is www.ricediet.com

The book I recommend (of several of theirs) is The Rice Diet Cookbook, which has

enough info about the diet to understand it AND has a bunch of great recipes to

help get you started. ALSO, even if you don't do the RICE Diet, it is a great

source of info on redcuing sodium in diet - lots of product info, and they have

some low-Na+ products available for purchase on website.

Another REALLY great book (cookbook) is called No-Salt, Lowest Sodium cookbook

written by Gazzaniga. He was a CHF patient in the Standford Heart

Transplant Program - he was determined to avoid transplant, so went very low

sodium, and improved his heart condition enough to be off the transplant list!!

His Stanford Cardio Signed off on the book, and the recipes have had complete

nutritional analysis and the info is included with each recipe so you know how

many mg Na+, carbs, fat, protein etc in a serving.

His website is www.megaheart.com

--

AME ruled out

sodium sensitive, htn and fatigue after meals high in Na+

low aldo and low renin

AVS - apparent failure to cath - low aldo and cortisol

Possible PA/Conn's

Cincinnati, Ohio