Introduction

May 18, 2012

is extremely talented and creative and for years has produced informative essays about NFP on her blog. I'm glad she's finally introduced herself.Sent from my iPhoneOn May 17, 2012, at 5:04 PM, Marguerite <mduanemd@...> wrote:

Dear ,Welcome to the list! I look forward to reading your blog. Do you ever accept guest posts. I often have ideas, but do not have time to write a regular blogSincerely,Dr. Marguerite DuaneSent from my iPhoneOn May 17, 2012, at 3:37 PM, J <2@...> wrote:

Hello, my name is . I served as first full time NFP Coordinator in the Diocese of Madison from 2007-09 until my family relocated. I've been blogging about NFP, fertility and family life issues at NFPworksblog.com since 2007, and currently serve as the Mission Development Coordinator for the Edith Stein Foundation. Thanks to Dr. Dominic Pedulla for introducing me to this list.

-- Real Love. Real Natural.Natural Family Planning Blog

=

May 18, 2012

Welcome ! So glad to have you here! I love what you do!a Van Uden, LPNAccredited Instructor, Billings Ovulation Methodwww.facebook.com/BillingsMethod From: nfpblog@...Date: Thu, 17 May 2012 14:37:25 -0500Subject: Introduction

Hello, my name is . I served as first full time NFP Coordinator in the Diocese of Madison from 2007-09 until my family relocated. I've been blogging about NFP, fertility and family life issues at NFPworksblog.com since 2007, and currently serve as the Mission Development Coordinator for the Edith Stein Foundation. Thanks to Dr. Dominic Pedulla for introducing me to this list.

-- Real Love. Real Natural.Natural Family Planning Blog

July 21, 2012

Don't worry about endo now but make sure you know all about AVS and degree

of dumbness of your radiologist later...or else...well read recent posts by

those here with AVS complications!!!

Max.

| Introduction

|

|I found my way here thru the Wayward Bus blog, which I stumbled upon last

|night after getting my CT results back and discovering an answer to my

|ridiculously high blood pressure Really enjoyed reading her story.

|

|I am female, 41 years old, with a BMI in the high end of the normal range

(5'5 "

|155 lbs). I am very active, getting my heart rate up to avg 150 for 45

minutes at

|least 4 times a week. I don't smoke or drink, nor do I eat lots of fast

|food/processed food.

|

|My blood pressure average is 160/100. My potassium (K) level has been low

for

|over 2 years. Low K was discovered after I had severe heart palpitations

and my

|doctor ran a blood test. I have been taking K supplements for quite a

while,

|admittedly not always faithfully. The BP was thought to just be doctor

white coat

|fear, not real, so was brushed off (and granted, I allowed that brush off).

|

| My general doctor this year at my checkup insisted I needed to get an

answer to

|the high BP and sent me to a nephrologist. A young and curious fellow, the

|nephrologist took my nicely put together chart of my blood work history, BP

|history and looked it over. He suggested there was a chance this was no

" run of

|the mill " hypertension, but something with a cause. He mentioned the words

|Conn's Syndrome.

|

|He ordered bloodwork checks of renin, aldosterone and the ratio one. Sure

|enough, aldosterone came back high. He also sent me for a renal duplex

|ultrasound to check kidney function. While that was great (yay for good

kidney

|function!) masses on my liver were a concern enough that he sent me for a

C/T

|scan of abdomen and pelvis. THAT turned up hepatic hemangioma (benign,

|Mom also has) and ....a 2 cm right adrenal adenoma.

|

|I started taking spirolactone last week in advance of the C/T results and

my

|blood pressure is some lower (145/90). I am not having any side effects

from the

|med, but I'd rather not be on it for life. I am thinking I would like to

get rid of

|this adrenal adenoma and " fix " the cause of this BP, heart palpitations and

the

|inability to shake off weight. I also have always had issues with blood

sugar

|swings. I meet with the nephologist again next Friday. I assume he'll

point me

|over to an endocrinologist.

|

|My question to the group is - Any recommendation for an endocrinologist in

NJ?

|I need one that works with my insurance, but I'll take any name you have.

If

|possible I'd like to keep the adrenal gland and just lose the tumor, but

that may

|not be possible.

|

|Thanks!

|Jill

|

|------------------------------------

|

July 21, 2012

Welcome Jill, Your Neperologhist did very well until he started you on spironolactone (MCB). You very likely have hyperaldosteronism (Conn's Syndrome or PA, it's all essentially the same.) If you want to remove the adenoma (tumor) he should have done the confirmation testing before starting the MCB. To see the proper testing protocol see "Aldosterone Causes of Hypertension" in our files section. (This is written by the doctors at NIH that treated me for 14 days in April.)

Once they confirm you have PA they should confirm it is being caused by that adenoma with an AVS since you are slightly over the majic cutoff age of 40 - hell to get OLD, isn't it? Once those steps are completed they could decide if you are a candidate for surgery and you could start spironolactone until surgery.

In the US they usually remove the entire adrenal. They have tried partial removals but I have heard of only limited sucess and I understand it is more complicated. Your other adrenal will take over and usually function just fine. They also find the affected adrenal may harbor additional small tumors when they disect it.

Your BP looks like it reacted nicely to the MCB. It often takes a little tweaking to get the dosage correct. What did he start you at? Did he explain low salt (Na) or the DASH diet? Excess Na will cause MCBs to be ineffective and extra potassium (K+) helps lower BP.

My experience has been that weight loss is possible once you get the excess aldosterone under cotrol, I was on spiro and had lost 25+ lbs when I had to discontinue due to gynecomastia. w/i 2 weeks I regained 15 lbs! I started Eplerenone and had lost 10 lbs when I saw my PCP on July 9. I had a recheck of bp on the 18th and had lost an additional 5! (Of course I have about twice as much to "play with" as you!) Blood Sugar is also often impacted - I have T2DM and had to double my Metformin when MCB was in full control!

Make sure we know all your meds and a summary. A "thumbnail" at the end of your posts will help us get to know you. BTW, msmith_1928 is the author of Wayward Bus. She has done an excellent job documenting her journey! Many of us here love to share and help and probably know more than the average doctor about this.

.....

>> I found my way here thru the Wayward Bus blog, which I stumbled upon last night after getting my CT results back and discovering an answer to my ridiculously high blood pressure Really enjoyed reading her story. > > I am female, 41 years old, with a BMI in the high end of the normal range (5'5" 155 lbs). I am very active, getting my heart rate up to avg 150 for 45 minutes at least 4 times a week. I don't smoke or drink, nor do I eat lots of fast food/processed food. > > My blood pressure average is 160/100. My potassium (K) level has been low for over 2 years. Low K was discovered after I had severe heart palpitations and my doctor ran a blood test. I have been taking K supplements for quite a while, admittedly not always faithfully. The BP was thought to just be doctor white coat fear, not real, so was brushed off (and granted, I allowed that brush off).> > My general doctor this year at my checkup insisted I needed to get an answer to the high BP and sent me to a nephrologist. A young and curious fellow, the nephrologist took my nicely put together chart of my blood work history, BP history and looked it over. He suggested there was a chance this was no "run of the mill" hypertension, but something with a cause. He mentioned the words Conn's Syndrome.> > He ordered bloodwork checks of renin, aldosterone and the ratio one. Sure enough, aldosterone came back high. He also sent me for a renal duplex ultrasound to check kidney function. While that was great (yay for good kidney function!) masses on my liver were a concern enough that he sent me for a C/T scan of abdomen and pelvis. THAT turned up hepatic hemangioma (benign, Mom also has) and ....a 2 cm right adrenal adenoma.> > I started taking spirolactone last week in advance of the C/T results and my blood pressure is some lower (145/90). I am not having any side effects from the med, but I'd rather not be on it for life. I am thinking I would like to get rid of this adrenal adenoma and "fix" the cause of this BP, heart palpitations and the inability to shake off weight. I also have always had issues with blood sugar swings. I meet with the nephologist again next Friday. I assume he'll point me over to an endocrinologist. > > My question to the group is - Any recommendation for an endocrinologist in NJ? I need one that works with my insurance, but I'll take any name you have. If possible I'd like to keep the adrenal gland and just lose the tumor, but that may not be possible.> > Thanks!> Jill>

July 21, 2012

Welcome Jill!

A couple bits of advice about your potassium. Docs have this horribly bad habit of blowing off a "borderline" potassium or just blowing it off in general. Many of us had years long high blood pressures and low potassiums (some MANY years) so we know what you're going through. Don't discount your potassium as the cause of many or most of the past woes. HTN causes some, but not usually as the HTN is silent in general - it's doing it's damage, but the K is the often the root of headaches, fatigue, cramps, weakness, brain fog, insomnia etc. Keep it at a good level still. Many have to still take it on spiro - even though they say spiro raises K it doesn't seem to do it in most of us. You may still need it.

Make sure, look through Dr G's files in this list and make sure they are taking your potassium correctly.

That's my 2 cents for now. Once my K was corrected it felt like a new world, or my old world again.

45 yo PA-C with PA, & hyperthyroidism. father of 7 children (same wife of 22 years!). Went 7-8 years NEVER having a normal potassium and bp's often 180/140, even with mutliple hospitalizations and even more ER vsits, yet renin and aldo never checked, and diagnosis was ALWAYS missed. A cardio in 11/2010 suggested spiro as in his office that day I was 180/140 ON 5 BP MEDS!. 2 doses of spiro I was 120/80. I took spiro and DASHed (after finding this list) after that and lately not needing my spiro IF I eat right and exercise, but have had to stop spiro now as B dropping too low. I am a fanatic about nothing, so I do not DASH 100% perfect (meaning I enjoy things I always have in MODERATION), but I make a great effort on low sodium and a good, not great, effort on K.

From: NJ Roadie <junk@...>Subject: Introductionhyperaldosteronism Date: Saturday, July 21, 2012, 12:58 PM

I found my way here thru the Wayward Bus blog, which I stumbled upon last night after getting my CT results back and discovering an answer to my ridiculously high blood pressure Really enjoyed reading her story. I am female, 41 years old, with a BMI in the high end of the normal range (5'5" 155 lbs). I am very active, getting my heart rate up to avg 150 for 45 minutes at least 4 times a week. I don't smoke or drink, nor do I eat lots of fast food/processed food. My blood pressure average is 160/100. My potassium (K) level has been low for over 2 years. Low K was discovered after I had severe heart palpitations and my doctor ran a blood test. I have been taking K supplements for quite a while, admittedly not always faithfully. The BP was thought to just be doctor white coat fear, not real, so was brushed off (and granted, I allowed that brush off).My general doctor this year at my checkup insisted I needed to get an answer

to the high BP and sent me to a nephrologist. A young and curious fellow, the nephrologist took my nicely put together chart of my blood work history, BP history and looked it over. He suggested there was a chance this was no "run of the mill" hypertension, but something with a cause. He mentioned the words Conn's Syndrome.He ordered bloodwork checks of renin, aldosterone and the ratio one. Sure enough, aldosterone came back high. He also sent me for a renal duplex ultrasound to check kidney function. While that was great (yay for good kidney function!) masses on my liver were a concern enough that he sent me for a C/T scan of abdomen and pelvis. THAT turned up hepatic hemangioma (benign, Mom also has) and ....a 2 cm right adrenal adenoma.I started taking spirolactone last week in advance of the C/T results and my blood pressure is some lower (145/90). I am not having any side effects from the med, but I'd rather not be on it for life. I

am thinking I would like to get rid of this adrenal adenoma and "fix" the cause of this BP, heart palpitations and the inability to shake off weight. I also have always had issues with blood sugar swings. I meet with the nephologist again next Friday. I assume he'll point me over to an endocrinologist. My question to the group is - Any recommendation for an endocrinologist in NJ? I need one that works with my insurance, but I'll take any name you have. If possible I'd like to keep the adrenal gland and just lose the tumor, but that may not be possible.Thanks!Jill

July 21, 2012

Curious...What's the "roadie" are you a musician?

From: NJ Roadie <junk@...>Subject: Introductionhyperaldosteronism Date: Saturday, July 21, 2012, 12:58 PM

I found my way here thru the Wayward Bus blog, which I stumbled upon last night after getting my CT results back and discovering an answer to my ridiculously high blood pressure Really enjoyed reading her story. I am female, 41 years old, with a BMI in the high end of the normal range (5'5" 155 lbs). I am very active, getting my heart rate up to avg 150 for 45 minutes at least 4 times a week. I don't smoke or drink, nor do I eat lots of fast food/processed food. My blood pressure average is 160/100. My potassium (K) level has been low for over 2 years. Low K was discovered after I had severe heart palpitations and my doctor ran a blood test. I have been taking K supplements for quite a while, admittedly not always faithfully. The BP was thought to just be doctor white coat fear, not real, so was brushed off (and granted, I allowed that brush off).My general doctor this year at my checkup insisted I needed to get an answer

to the high BP and sent me to a nephrologist. A young and curious fellow, the nephrologist took my nicely put together chart of my blood work history, BP history and looked it over. He suggested there was a chance this was no "run of the mill" hypertension, but something with a cause. He mentioned the words Conn's Syndrome.He ordered bloodwork checks of renin, aldosterone and the ratio one. Sure enough, aldosterone came back high. He also sent me for a renal duplex ultrasound to check kidney function. While that was great (yay for good kidney function!) masses on my liver were a concern enough that he sent me for a C/T scan of abdomen and pelvis. THAT turned up hepatic hemangioma (benign, Mom also has) and ....a 2 cm right adrenal adenoma.I started taking spirolactone last week in advance of the C/T results and my blood pressure is some lower (145/90). I am not having any side effects from the med, but I'd rather not be on it for life. I

am thinking I would like to get rid of this adrenal adenoma and "fix" the cause of this BP, heart palpitations and the inability to shake off weight. I also have always had issues with blood sugar swings. I meet with the nephologist again next Friday. I assume he'll point me over to an endocrinologist. My question to the group is - Any recommendation for an endocrinologist in NJ? I need one that works with my insurance, but I'll take any name you have. If possible I'd like to keep the adrenal gland and just lose the tumor, but that may not be possible.Thanks!Jill

July 21, 2012

>

> Curious...What's the " roadie " are you a musician?

No, the term is used also in cycling - " roadies " are cyclists who ride/race on

the road (i.e. Tour de France) as opposed to those who race Track, Mountain or

CycloCross Racing on the road is my husband's hobby, we share the name

cause I didn't need one more user name/password to memorize

> Jill

Spiro 25 mg

Potassium 20 meq

Right adrenal adenoma (2 cm)

BP off spiro avg 155/100

July 21, 2012

Will do! Thanks for the heads up. I was hoping I could skip the AVS, but I guess

not, huh?

Jill

>

> Don't worry about endo now but make sure you know all about AVS and degree

> of dumbness of your radiologist later...or else...well read recent posts by

> those here with AVS complications!!!

>

> Max.

July 21, 2012

Alternative to AVS, there are other non-invasive methods more efficient and

reliable and quicker than AVS...like Scintiscan by NP59 iodine....etc. In my

own case, after reading about so many mistakes by unreliable radiologists

performing AVS I decided to have Scintiscan NP59 with no pain...perhaps few

weeks of higher creatinine!

Max.

| Re: Introduction

|

|Will do! Thanks for the heads up. I was hoping I could skip the AVS, but I

guess

|not, huh?

|

|Jill

|

|>

|> Don't worry about endo now but make sure you know all about AVS and

|> degree of dumbness of your radiologist later...or else...well read

|> recent posts by those here with AVS complications!!!

|>

|> Max.

|

|------------------------------------

|

July 21, 2012

you are close to Bethesda MD and NIH where everything can be done correctly and for free. JC will guide you as to how to get this set up.But we need you complete COMPLETE story to be able to help. In case you did not get our intro here it is again.If you goal is to fee well as soon as you can then start DASHIng tomorrow after you get the book.Tell you team you are going to do this as BP may fall on the meds you are on and they may need to be stepped down.CE Grim MDOn Jul 21, 2012, at 12:58 PM, NJ Roadie wrote:etI found my way here thru the Wward Bus blog, which I stumbled upon last night after getting my CT results back and discovering an answer to my ridiculously high blood pressure Really enjoyed reading her story.

I am female, 41 years old, with a BMI in the high end of the normal range (5'5" 155 lbs). I am very active, getting my heart rate up to avg 150 for 45 minutes at least 4 times a week. I don't smoke or drink, nor do I eat lots of fast food/processed food.

My blood pressure average is 160/100. My potassium (K) level has been low for over 2 years. Low K was discovered after I had severe heart palpitations and my doctor ran a blood test. I have been taking K supplements for quite a while, admittedly not always faithfully. The BP was thought to just be doctor white coat fear, not real, so was brushed off (and granted, I allowed that brush off).

My general doctor this year at my checkup insisted I needed to get an answer to the high BP and sent me to a nephrologist. A young and curious fellow, the nephrologist took my nicely put together chart of my blood work history, BP history and looked it over. He suggested there was a chance this was no "run of the mill" hypertension, but something with a cause. He mentioned the words Conn's Syndrome.

He ordered bloodwork checks of renin, aldosterone and the ratio one. Sure enough, aldosterone came back high. He also sent me for a renal duplex ultrasound to check kidney function. While that was great (yay for good kidney function!) masses on my liver were a concern enough that he sent me for a C/T scan of abdomen and pelvis. THAT turned up hepatic hemangioma (benign, Mom also has) and ....a 2 cm right adrenal adenoma.

I started taking spirolactone last week in advance of the C/T results and my blood pressure is some lower (145/90). I am not having any side effects from the med, but I'd rather not be on it for life. I am thinking I would like to get rid of this adrenal adenoma and "fix" the cause of this BP, heart palpitations and the inability to shake off weight. I also have always had issues with blood sugar swings. I meet with the nephologist again next Friday. I assume he'll point me over to an endocrinologist.

My question to the group is - Any recommendation for an endocrinologist in NJ? I need one that works with my insurance, but I'll take any name you have. If possible I'd like to keep the adrenal gland and just lose the tumor, but that may not be possible.

Thanks!

Jill

July 21, 2012

I am first a Hypertensionologist, then an Endocrione Hypertensionologist, a Nephrology Hypertensionologist and a Cardiolgy Hypertensionologist.Never call me JUST an Endocrinologist. ;-)CE Grim MDOn Jul 21, 2012, at 4:17 PM, msmith_1928 wrote:

Hi Jill, and welcome! That's my blog, I'm happy to see that it helped you find your way here.

Even though this group is moderated by an endocrinologist, I have to say that my experiences with endos and PA were pretty negative. The average endo knows diabetes and not much else - a broad generalization but I've been to a few who are professors at med schools here in SoCal, and they were all clueless. In my case, it was a nephrologist who knew about PA.

You already know you have an adenoma; if you wish to pursue surgery, the next step will probably be a saline suppression test, followed by AVS. Your neph can order the saline test; you'll need an interventional radiologist for AVS.

If AVS indicates you are a candidate for surgery, then you will need an endocrine surgeon (not an endocrinologist).

Having just started spiro kinda throws a monkey wrench into things - for AVS, you need to be off of it for at least 6 weeks.

As for keeping the adrenal gland - while I know there is at least one person on this board who had the tumor removed but not the whole gland, this isn't commonly done in the U.S. Further, there is a strong possibility that if there is one tumor, there are others in the same gland that are too small to be detected via imaging.

Hopefully someone on your side of the country can give you some recommendations.

-msmith1928

Left laparoscopic adrenalectomy 10/13/11

>

> I found my way here thru the Wayward Bus blog, which I stumbled upon last night after getting my CT results back and discovering an answer to my ridiculously high blood pressure Really enjoyed reading her story.

>

> I am female, 41 years old, with a BMI in the high end of the normal range (5'5" 155 lbs). I am very active, getting my heart rate up to avg 150 for 45 minutes at least 4 times a week. I don't smoke or drink, nor do I eat lots of fast food/processed food.

>

> My blood pressure average is 160/100. My potassium (K) level has been low for over 2 years. Low K was discovered after I had severe heart palpitations and my doctor ran a blood test. I have been taking K supplements for quite a while, admittedly not always faithfully. The BP was thought to just be doctor white coat fear, not real, so was brushed off (and granted, I allowed that brush off).

>

> My general doctor this year at my checkup insisted I needed to get an answer to the high BP and sent me to a nephrologist. A young and curious fellow, the nephrologist took my nicely put together chart of my blood work history, BP history and looked it over. He suggested there was a chance this was no "run of the mill" hypertension, but something with a cause. He mentioned the words Conn's Syndrome.

>

> He ordered bloodwork checks of renin, aldosterone and the ratio one. Sure enough, aldosterone came back high. He also sent me for a renal duplex ultrasound to check kidney function. While that was great (yay for good kidney function!) masses on my liver were a concern enough that he sent me for a C/T scan of abdomen and pelvis. THAT turned up hepatic hemangioma (benign, Mom also has) and ....a 2 cm right adrenal adenoma.

>

> I started taking spirolactone last week in advance of the C/T results and my blood pressure is some lower (145/90). I am not having any side effects from the med, but I'd rather not be on it for life. I am thinking I would like to get rid of this adrenal adenoma and "fix" the cause of this BP, heart palpitations and the inability to shake off weight. I also have always had issues with blood sugar swings. I meet with the nephologist again next Friday. I assume he'll point me over to an endocrinologist.

>

> My question to the group is - Any recommendation for an endocrinologist in NJ? I need one that works with my insurance, but I'll take any name you have. If possible I'd like to keep the adrenal gland and just lose the tumor, but that may not be possible.

>

> Thanks!

> Jill

>

July 21, 2012

Jill: note the nice thumbnail.CE Grim MDOn Jul 21, 2012, at 5:50 PM, Bingham wrote: