Re: Re: PA and weight survey

April 23, 2011

Just a side note. From our PA survey and the 64 members who answered it, 18 people stated that they'd be diagnosed with insulin resistance or glucose intolerance.

a

Subject: Re: PA and weight surveyTo: hyperaldosteronism Date: Saturday, April 23, 2011, 12:30 PM

Great idea , I'll go next - female, 5'3", 120 pounds. Prior to PA onset, I never weighed more than 103 but was constantly lectured about how I needed to put on weight. After PA onset, my weight shot up to 172 within a year! After learning of my food intolerances and insulin resistance in early 2003, after changing my diet, my weight dropped back down to around 120 and has stayed there ever since with a couple of exceptions - when I've tried to add rice (the only grain I can tolerate) and potatoes back into my diet regularly, I'll shoot up into the high 120s which to me is the danger zone. Once I drop the rice/potatoes, my weight goes back to 120 within a few days.The other exception: salt. If I eat a restaurant meal, even when I request NO ADDED SALT, I'm guaranteed to gain 2-4 pounds. I've stopped eating out.- msmith192845, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine aldosterone

28.5/renin 0.2, potassium <2.9 (when not taking supplements); 25mg spiro caused gynecomastia; no HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg, norethindrone .35mg, cyclobenzaprine 5-10mg when needed; low sodium, fructose- and grain-free diet> > > > > All three incidents happened to be on the heaviest days of my periods which have been increasing worse. My doctor was unaware of any correlation between the two but I swear hormones are playing a huge role in this as well. > > > > , my OBGYN believes the same thing. I've got crazy irregular menstrual patterns, high estrogen and low progesterone, and take progestin to basically keep from menstruating, because when I do, I get heavy bleeding, pain, headaches, all kinds of unpleasant things. My BP rises with the heavy bleeding.> > > > > I am 41 years old and have never had kids.> > > > I'm 45 and childless by choice. As nulliparous women, we are in the minority and we are not studied much -

so there's a lot about us the experts don't know! > > > > > I just recently had an endometrial ablasion> > > > This was what was recommended for my menstrual difficulties if the progestin pills didn't help. > > > > > I also started suffering from Hypoglycemia and my blood sugar was > > > dropping way down ad then spiking way up. My Endo put me on Metformin but it tore up my stomach.> > > > Same story here. Try brand name extended-release Glumetza, it's better tolerated (but expensive if your insurance won't cover the name-brand drug). Before my PA diagnosis, my hypoglycemia/insulin resistance/menstrual difficulties were misdiagnosed as PCOS, which often responds to Met. In my case, Met didn't do much of anything, and I sensed that it was making the hypos worse.> > > > > I have joined Weight

Watchers to aid in healthy eating and hopefully lose this weight I have gained since this > > > all first started. Since joining Weight Watchers my blood pressure has dropped so I am now off the additional blood pressure medication > > > Bystolic and my AC1 number droped 1 point and I haven't had any > > > hypoglycemic incidents but the weight loss is SLOW.> > > > After my first PA attack, I put on 50 pounds - I had been skinny/underweight my entire life before that. Nothing worked for weight loss, and I'm an active person so I was already exercising - yoga, bike riding, hiking, long daily walks. Eventually I was diagnosed with intolerances to grains and sugars - once I dumped those from my diet, the weight just fell right off. Getting the junk out of my diet helped with the hypos a lot too.> > > > > Due to all the heart palpitations and what

you experience with this > > > disease my anxiety is through the roof. I saw an Anxiety Doctor for > > > about three months but have stopped going now.> > > > I went through the whole psych routine too. Psych meds did more damage for me than good, but I do keep antianxiety meds on hand for emergencies. Now that I understand the cause of the palpitations, I've got a lot less anxiety because I know it's my body that is crazy and not my head > > > > > I am looking for people that have suffered from this disease for more than two years and what your life is like now. Will I ever feel > > > better?> > > > My first known PA symptoms were in the summer of 1997, so I've definitely had this more than two years. I didn't get a diagnosis until just two months ago though! I can definitely say that since the disease has been

identified and I am no longer being treated with the wrong meds for the wrong condition, my life is a thousand times better - and I'm not even treating the PA except for potassium supplements right now. I can only hope that adrenalectomy or eplerenone will make things better, and not worse - I should know soon which route I will be taking.> > > > > Will I ever lose this weight? Will things get worse?> > > > My doc attributes the weight gain I once had to insulin resistance induced by the tumor. He feels certain that once the tumor is gone, I won't have metabolic issues any longer. In the meantime - yes, over the years my insulin resistance has only gotten worse. As long as I avoid ALL grains and sugars, I can maintain a healthy weight - this is easy for me to do because grains and sugars cause unpleasant symptoms for me. But it means NEVER eating anything packaged, processed, or otherwise

convenient, and it definitely has an impact on my social life, since food-as-entertainment is such an ingrained part of American culture. I've learned to be very good at saying "No, thank you." > > > > > Is this a manageable disease?> > > > I'd like to know the answer to that too. On this board. Dr. Grim swears that by taking meds and following the DASH diet it can be, but I have not yet seen any 40-year data to back that theory up. I'd like to know, for instance, how many PA patients following the spiro/DASH prescription have healthy, active lives, do not become obese, do not become depressed or otherwise develop quality-of-life issues. From posting here and on another support group, I'm seeing a lot of obesity and depression among PA patients, and this scares me more than anything.>------------------------------------

April 23, 2011

Hi Again,

Would you be able to give me a day or two of what you eat for

breakfast, lunch and dinner? Do you drink a lot of water?

I am willing to try anything!

Kellie

Great idea , I'll go next - female, 5'3", 120

pounds.

Prior to PA onset, I never weighed more than 103 but was

constantly lectured about how I needed to put on weight.

After PA onset, my weight shot up to 172 within a year!

After learning of my food intolerances and insulin

resistance in early 2003, after changing my diet, my

weight dropped back down to around 120 and has stayed

there ever since with a couple of exceptions - when I've

tried to add rice (the only grain I can tolerate) and

potatoes back into my diet regularly, I'll shoot up into

the high 120s which to me is the danger zone. Once I drop

the rice/potatoes, my weight goes back to 120 within a few

days.

The other exception: salt. If I eat a restaurant meal,

even when I request NO ADDED SALT, I'm guaranteed to gain

2-4 pounds. I've stopped eating out.

- msmith1928

45, female, 5'3", 120 lbs, 1cm left adrenal nodule, supine

aldosterone 28.5/renin 0.2, potassium <2.9 (when not

taking supplements); 25mg spiro caused gynecomastia; no

HTN meds; current meds are 20MEQ K 2x/day, singulair 10mg,

norethindrone .35mg, cyclobenzaprine 5-10mg when needed;

low sodium, fructose- and grain-free diet

>

> > All three incidents happened to be on the

heaviest days of my periods which have been increasing

worse. My doctor was unaware of any correlation between

the two but I swear hormones are playing a huge role in

this as well.

>

> , my OBGYN believes the same thing. I've got

crazy irregular menstrual patterns, high estrogen and low

progesterone, and take progestin to basically keep from

menstruating, because when I do, I get heavy bleeding,

pain, headaches, all kinds of unpleasant things. My BP

rises with the heavy bleeding.

>

> > I am 41 years old and have never had kids.

>

> I'm 45 and childless by choice. As nulliparous women,

we are in the minority and we are not studied much - so

there's a lot about us the experts don't know!

>

> > I just recently had an endometrial ablasion

>

> This was what was recommended for my menstrual

difficulties if the progestin pills didn't help.

>

> > I also started suffering from Hypoglycemia and

my blood sugar was

>

> > dropping way down ad then spiking way up. My

Endo put me on Metformin but it tore up my stomach.

>

> Same story here. Try brand name extended-release

Glumetza, it's better tolerated (but expensive if your

insurance won't cover the name-brand drug). Before my PA

diagnosis, my hypoglycemia/insulin resistance/menstrual

difficulties were misdiagnosed as PCOS, which often

responds to Met. In my case, Met didn't do much of

anything, and I sensed that it was making the hypos worse.

>

> > I have joined Weight Watchers to aid in healthy

eating and hopefully lose this weight I have gained since

this

>

> > all first started. Since joining Weight Watchers

my blood pressure has dropped so I am now off the

additional blood pressure medication

>

> > Bystolic and my AC1 number droped 1 point and I

haven't had any

>

> > hypoglycemic incidents but the weight loss is

SLOW.

>

> After my first PA attack, I put on 50 pounds - I had

been skinny/underweight my entire life before that.

Nothing worked for weight loss, and I'm an active person

so I was already exercising - yoga, bike riding, hiking,

long daily walks. Eventually I was diagnosed with

intolerances to grains and sugars - once I dumped those

from my diet, the weight just fell right off. Getting the

junk out of my diet helped with the hypos a lot too.

>

> > Due to all the heart palpitations and what you

experience with this

>

> > disease my anxiety is through the roof. I saw an

Anxiety Doctor for

>

> > about three months but have stopped going now.

>

> I went through the whole psych routine too. Psych

meds did more damage for me than good, but I do keep

antianxiety meds on hand for emergencies. Now that I

understand the cause of the palpitations, I've got a lot

less anxiety because I know it's my body that is crazy and

not my head

>

> > I am looking for people that have suffered from

this disease for more than two years and what your life is

like now. Will I ever feel

>

> > better?

>

> My first known PA symptoms were in the summer of

1997, so I've definitely had this more than two years. I

didn't get a diagnosis until just two months ago though! I

can definitely say that since the disease has been

identified and I am no longer being treated with the wrong

meds for the wrong condition, my life is a thousand times

better - and I'm not even treating the PA except for

potassium supplements right now. I can only hope that

adrenalectomy or eplerenone will make things better, and

not worse - I should know soon which route I will be

taking.

>

> > Will I ever lose this weight? Will things get

worse?

>

> My doc attributes the weight gain I once had to

insulin resistance induced by the tumor. He feels certain

that once the tumor is gone, I won't have metabolic issues

any longer. In the meantime - yes, over the years my

insulin resistance has only gotten worse. As long as I

avoid ALL grains and sugars, I can maintain a healthy

weight - this is easy for me to do because grains and

sugars cause unpleasant symptoms for me. But it means

NEVER eating anything packaged, processed, or otherwise

convenient, and it definitely has an impact on my social

life, since food-as-entertainment is such an ingrained

part of American culture. I've learned to be very good at

saying "No, thank you."

>

> > Is this a manageable disease?

>

> I'd like to know the answer to that too. On this

board. Dr. Grim swears that by taking meds and following

the DASH diet it can be, but I have not yet seen any

40-year data to back that theory up. I'd like to know, for

instance, how many PA patients following the spiro/DASH

prescription have healthy, active lives, do not become

obese, do not become depressed or otherwise develop

quality-of-life issues. From posting here and on another

support group, I'm seeing a lot of obesity and depression

among PA patients, and this scares me more than anything.

>

April 23, 2011

Thanks shawna. I will begin working on our poster for ASH SOON Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertension