Re: My PA Story

March 28, 2012

Thanks for your story. Sorry it took so long to figure out what is the problem. Keep us posted on your progress.Any other family Hx of this problem?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 28, 2012, at 21:52, Ann Marie <annmariehardesty@...> wrote:

I can't tell you all what it means to me to have found this group. A special thanks to Dr. Grim for being here with us. I feel a little overwhelmed to be with a group of people who can understand what I've been going through. It's been a long, strange road.

My name is Ann. I'm a 35yo female with Primary Hyperaldosteronism. Up til the age of 32, I had what I considered to be a very healthy life. I was bothered by migraines and sweaty hands and feet, but I just took that to be my lot in life. Dare I say, I was even proud of my health. I was a non-smoking, non-drinking vegetarian who ate hardly any processed foods, regularly exercised (albeit gently) and had found stress relief through yoga and meditation. A stay-at-home mom of one young son (at the time), I had little stress in life. I didn't see doctors often, but when I did everything always looked "just fine."

At the age of 27, my son, Lucas, was born at home with a fast labor and no complications. Looking back, we remember our midwife casually mentioned my blood pressure was creeping up, but nothing too alarming or unsafe. This was the first time anyone had ever said I had high blood pressure. I had zero record in any part of my family history of HBP. In fact, my numbers had always been on the low end. After that, I would have a couple other mentions of high blood pressure, interspersed with mentions of low blood pressure, and I began to suspect I had the notorious "white coat syndrome." At the age of 32, in early summer, I became pregnant again. Immediately, my blood pressure readings with the same midwife, became surprisingly high. Given my "excellent" health and lack of any BP history, we just watched it. We told ourselves I was very excited to be pregnant, which I was. I was told to relax.

By late summer, my numbers had crept toward 140/90, at which time I began working with an OB/GYN. A small amount of Labetalol helped a little, and I was told to relax. BP crept up. Meds were added and altered. By mid-November, I was hospitalized with 190s/120s. This was too early for pre-eclampsia, everyone said, but that's clearly what this is. My ankles were swollen, my reflexes were hyper, I was leaking protein, and my BP kept soaring. I was told to just relax. Discharged to bed rest, that same evening I returned to the ER with 160s/110s. The entire staff at this small town hospital were FREAKED OUT. They told me to relax. They told the Air Vac nurse to prepare for seizures and possible miscarriage. The big city hospital room was crammed with teams of doctors, residents, and nurses. My baby was just barely 27 weeks gestation. I stayed laying on my right side, in a dark hospital room for two weeks. Everyone told me to take visitors and watch tv..you know...make the

"best" of the situation. I was. Self monitoring, I found the less I talked or moved or ate, the more stable my BP was....but just barely. It was wild and unpredictable and I had gained a reputation of being "excitable" despite my calm and gentle demeanor. I was advised to "just try to relax." By this time, I don't mind telling you, I was about to scream "I AM relaxed!!!! I'm a very relaxed person!!!!!!" Doc after doc shook his/her head saying, "this isn't presenting typically," and "we don't completely understand preeclampsia yet." The magnesium distorted the room. It made my head throb and my baby's heart rate drop. At 29 weeks, the BP was so high, blood was being vacuumed out of the umbilical cord. My little girl was delivered via c-section and was two pounds, three ounces. I stayed a patient myself for five more days, tricking nurses by laying down to do my BP reads and eventually be discharged. They clearly

had no way to manage my BP, and I needed to be with my baby girl. I stayed by her side in the NICU for two more months. My blood pressure came down to 145/95. "If the pre-eclampsia isn't gone immediately after delivery, it will be in a few weeks." "Sometimes it takes a few months." "It can take up to a year." "Sometimes pregnancy brings up hypertension in people. You now have chronic hypertension."

Eighteen months passed. I ate boiled whole grains, green leafy vegetables, and raw nuts/seeds. I drank 10 glasses of water a day. I took hawthorn berries and omega 3s. No meat. No sugar. No alcohol. Nothing from a box. Gentle walking. Sitting mediation. My BP kept climbing. Nurses at the local health clinic (I was now uninsured,) told me to find new ways to relax. I'd smile and say "ok." Was it Vitamin D? Was it food allergies? Maybe I'm ridden with anxiety and I don't even know it? AM I stressed? Why is it higher in the mornings?...oh wait, not always. Why is it lower when I stand up?....oh wait, not always. Is this BP cuff calibrated right? Why is it lower when my day is actually stressful?...oh wait, not always.

In the late summer of 2011, symptoms got worse. My heart had frequent, intense palpitations, my mind was clouding over, my limbs were going numb. I started accepting the possibility of deterioration and even death. I secretly wrote letters to my children and laid out passwords for accounts my husband would need to access. Granted, I was still moving around, but it felt so hopeless and was clearly getting worse fast. I avoided any hospitals. We didn't have any insurance, and frankly, I had already been and found them to be out of ideas. My nurse practitioner decided to check my potassium levels and they were [i don't remember the exact number] dangerously low (hello, stage 4!). "It might be because of all your blood pressure medications." Great. She asked if I'd see one of her colleagues there at the clinic; a new doctor who just arrived and was gaining a reputation for his knowledge base..

At my first meeting in September 2011, with BP of 240/140, he said, "I think you may have one of two types of adrenal tumors." One blood and urine test later, he says "your aldosterone level is high (19) compared to your renin levels (undectable), but all other adrenal hormones look good. Paired with the low potassium, I suspect you have hyperaldosteronism. The adrenals may be malfunctioning OR there may be a mass causing the trouble. The good news is this can be manageable." With that, he put me on Spironolactone and within weeks my BP dropped to 110s/70s for the first time in years. He petitioned the director of the Community Health Center to approve a CT scan for me (free of charge). A 1.5x2cm mass was found on my left adrenal. Every time I see him, I want to give him a bear hug. So far, I've resisted, out of politeness....but it still might have to happen.

With the help of generous in-laws and the new PCIP insurance, I visited a nephrologist at Mayo Clinic for the first time in Feb. 2012. They agreed with my doc's findings and asked for additional 24-hr urine tests, blood work, and salt loading tests. I had my follow-up visit today, and they confirmed PA. Following what I'm told is current Mayo procedure, I am scheduled next for adrenal vein sampling. If that mass is found to be the culprit, I am told I'm a good candidate for surgery. They also told me the statistics are just not big enough for any real numbers. My mass is "more likely than not" the cause of the aldosterone. An adrenalectomy is "more likely than not" going to remedy my hbp. The remaining adrenal will "more likely than not" be okay.

I realize I am one of the lucky ones to have come this far in diagnosis. I've felt at times I was losing my mind. Even now, no professional will confirm this brain fog (I think I've dropped 100 IQ points), weight gain (30lbs in 6 months), 17 day menstrual cycles, or general feeling of "strangeness," so I don't even talk about it anymore. This condition has taken a few years of full attention and almost took the life of my daughter. I am heartbroken for those who have not yet been able to turn things around. May this forum, and maybe even my story, give you hope and help you know we are all in this together.

March 28, 2012

None. I even asked everyone alive to "think really hard." No cardiovascular disease. No potassium issues. From: Clarence Grim <lowerbp2@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Wednesday, March 28, 2012 10:02 PM Subject: Re: My PA Story

Thanks for your story. Sorry it took so long to figure out what is the problem. Keep us posted on your progress.Any other family Hx of this problem?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 28, 2012, at 21:52, Ann Marie <annmariehardesty@...> wrote:

I can't tell you all what it means to me to have found this group. A special thanks to Dr. Grim for being here with us. I feel a little overwhelmed to be with a group of people who can understand what I've been going through. It's been a long, strange road.

My name is Ann. I'm a 35yo female with Primary Hyperaldosteronism. Up til the age of 32, I had what I considered to be a very healthy life. I was bothered by migraines and sweaty hands and feet, but I just took that to be my lot in life. Dare I say, I was even proud of my health. I was a non-smoking, non-drinking vegetarian who ate hardly any processed foods, regularly exercised (albeit gently) and had found stress relief through yoga and meditation. A stay-at-home mom of one young son (at the time), I had little stress in life. I didn't see doctors often, but when I did everything always looked "just fine."

At the age of 27, my son, Lucas, was born at home with a fast labor and no complications. Looking back, we remember our midwife casually mentioned my blood pressure was creeping up, but nothing too alarming or unsafe. This was the first time anyone had ever said I had high blood pressure. I had zero record in any part of my family history of HBP. In fact, my numbers had always been on the low end. After that, I would have a couple other mentions of high blood pressure, interspersed with mentions of low blood pressure, and I began to suspect I had the notorious "white coat syndrome." At the age of 32, in early summer, I became pregnant again. Immediately, my blood pressure readings with the same midwife, became surprisingly high. Given my "excellent" health and lack of any BP history, we just watched it. We told ourselves I was very excited to be pregnant, which I was. I was told to relax.

By late summer, my numbers had crept toward 140/90, at which time I began working with an OB/GYN. A small amount of Labetalol helped a little, and I was told to relax. BP crept up. Meds were added and altered. By mid-November, I was hospitalized with 190s/120s. This was too early for pre-eclampsia, everyone said, but that's clearly what this is. My ankles were swollen, my reflexes were hyper, I was leaking protein, and my BP kept soaring. I was told to just relax. Discharged to bed rest, that same evening I returned to the ER with 160s/110s. The entire staff at this small town hospital were FREAKED OUT. They told me to relax. They told the Air Vac nurse to prepare for seizures and possible miscarriage. The big city hospital room was crammed with teams of doctors, residents, and nurses. My baby was just barely 27 weeks gestation. I stayed laying on my right side, in a dark hospital room for two weeks. Everyone told me to take visitors and

watch tv..you know...make the

"best" of the situation. I was. Self monitoring, I found the less I talked or moved or ate, the more stable my BP was....but just barely. It was wild and unpredictable and I had gained a reputation of being "excitable" despite my calm and gentle demeanor. I was advised to "just try to relax." By this time, I don't mind telling you, I was about to scream "I AM relaxed!!!! I'm a very relaxed person!!!!!!" Doc after doc shook his/her head saying, "this isn't presenting typically," and "we don't completely understand preeclampsia yet." The magnesium distorted the room. It made my head throb and my baby's heart rate drop. At 29 weeks, the BP was so high, blood was being vacuumed out of the umbilical cord. My little girl was delivered via c-section and was two pounds, three ounces. I stayed a patient myself for five more days, tricking nurses by laying down to do my BP reads and eventually be discharged. They clearly

had no way to manage my BP, and I needed to be with my baby girl. I stayed by her side in the NICU for two more months. My blood pressure came down to 145/95. "If the pre-eclampsia isn't gone immediately after delivery, it will be in a few weeks." "Sometimes it takes a few months." "It can take up to a year." "Sometimes pregnancy brings up hypertension in people. You now have chronic hypertension."

Eighteen months passed. I ate boiled whole grains, green leafy vegetables, and raw nuts/seeds. I drank 10 glasses of water a day. I took hawthorn berries and omega 3s. No meat. No sugar. No alcohol. Nothing from a box. Gentle walking. Sitting mediation. My BP kept climbing. Nurses at the local health clinic (I was now uninsured,) told me to find new ways to relax. I'd smile and say "ok." Was it Vitamin D? Was it food allergies? Maybe I'm ridden with anxiety and I don't even know it? AM I stressed? Why is it higher in the mornings?...oh wait, not always. Why is it lower when I stand up?....oh wait, not always. Is this BP cuff calibrated right? Why is it lower when my day is actually stressful?...oh wait, not always.

In the late summer of 2011, symptoms got worse. My heart had frequent, intense palpitations, my mind was clouding over, my limbs were going numb. I started accepting the possibility of deterioration and even death. I secretly wrote letters to my children and laid out passwords for accounts my husband would need to access. Granted, I was still moving around, but it felt so hopeless and was clearly getting worse fast. I avoided any hospitals. We didn't have any insurance, and frankly, I had already been and found them to be out of ideas. My nurse practitioner decided to check my potassium levels and they were [i don't remember the exact number] dangerously low (hello, stage 4!). "It might be because of all your blood pressure medications." Great. She asked if I'd see one of her colleagues there at the clinic; a new doctor who just arrived and was gaining a reputation for his knowledge base..

At my first meeting in September 2011, with BP of 240/140, he said, "I think you may have one of two types of adrenal tumors." One blood and urine test later, he says "your aldosterone level is high (19) compared to your renin levels (undectable), but all other adrenal hormones look good. Paired with the low potassium, I suspect you have hyperaldosteronism. The adrenals may be malfunctioning OR there may be a mass causing the trouble. The good news is this can be manageable." With that, he put me on Spironolactone and within weeks my BP dropped to 110s/70s for the first time in years. He petitioned the director of the Community Health Center to approve a CT scan for me (free of charge). A 1.5x2cm mass was found on my left adrenal. Every time I see him, I want to give him a bear hug. So far, I've resisted, out of politeness....but it still might have to happen.

With the help of generous in-laws and the new PCIP insurance, I visited a nephrologist at Mayo Clinic for the first time in Feb. 2012. They agreed with my doc's findings and asked for additional 24-hr urine tests, blood work, and salt loading tests. I had my follow-up visit today, and they confirmed PA. Following what I'm told is current Mayo procedure, I am scheduled next for adrenal vein sampling. If that mass is found to be the culprit, I am told I'm a good candidate for surgery. They also told me the statistics are just not big enough for any real numbers. My mass is "more likely than not" the cause of the aldosterone. An adrenalectomy is "more likely than not" going to remedy my hbp. The remaining adrenal will "more likely than not" be okay.

I realize I am one of the lucky ones to have come this far in diagnosis. I've felt at times I was losing my mind. Even now, no professional will confirm this brain fog (I think I've dropped 100 IQ points), weight gain (30lbs in 6 months), 17 day menstrual cycles, or general feeling of "strangeness," so I don't even talk about it anymore. This condition has taken a few years of full attention and almost took the life of my daughter. I am heartbroken for those who have not yet been able to turn things around. May this forum, and maybe even my story, give you hope and help you know we are all in this together.

March 29, 2012

Hello and welcome! Your story is similar to mine (except no pregnancies in my

case), right down to the weight gain despite healthy eating. And the crazy

menstrual cycles! I haven't seen too many others here besides myself mention

that. Mine were an average of 13 days on, 13 days off, then repeat it all over

again.

I had my adrenalectomy in October and am happy to say that the surgery resolved

the HTN, low K, headaches, weight gain, and brain fog. My medical team really

did think it would resolve the menstrual issues as well, but no luck there - but

on the positive side, now that I'm no longer hypertensive I am able to take

combined oral contraceptives again and am managing just fine that way - the

estrogen doesn't seem to impact my BP in the least (118/78 last I checked).

Please keep us posted as to your progress, it sounds like you are in good hands

and will be on the way to wellness soon! And if you have any questions about the

surgery or the AVS, please ask

-msmith1928

Successful left laparoscopic adrenalectomy 10/13/11

>

> I can't tell you all what it means to me to have found this group. A special

thanks to Dr. Grim for being here with us. I feel a little overwhelmed to be

with a group of people who can understand what I've been going through. It's

been a long, strange road.

>

> My name is Ann. I'm a 35yo female with Primary Hyperaldosteronism. Up til

the age of 32, I had what I considered to be a very healthy life. I was

bothered by migraines and sweaty hands and feet, but I just took that to be my

lot in life. Dare I say, I was even proud of my health. I was a non-smoking,

non-drinking vegetarian who ate hardly any processed foods, regularly exercised

(albeit gently) and had found stress relief through yoga and meditation. A

stay-at-home mom of one young son (at the time), I had little stress in life. I

didn't see doctors often, but when I did everything always looked " just fine. "

>

> At the age of 27, my son, Lucas, was born at home with a fast labor and no

complications. Looking back, we remember our midwife casually mentioned my

blood pressure was creeping up, but nothing too alarming or unsafe. This was

the first time anyone had ever said I had high blood pressure. I had zero record

in any part of my family history of HBP. In fact, my numbers had always been on

the low end. After that, I would have a couple other mentions of high blood

pressure, interspersed with mentions of low blood pressure, and I began to

suspect I had the notorious " white coat syndrome. " At the age of 32, in early

summer, I became pregnant again. Immediately, my blood pressure readings with

the same midwife, became surprisingly high. Given my " excellent " health and

lack of any BP history, we just watched it. We told ourselves I was very

excited to be pregnant, which I was. I was told to relax.

>

> By late summer, my numbers had crept toward 140/90, at which time I began

working with an OB/GYN. A small amount of Labetalol helped a little, and I was

told to relax. BP crept up. Meds were added and altered. By mid-November, I

was hospitalized with 190s/120s. This was too early for pre-eclampsia, everyone

said, but that's clearly what this is. My ankles were swollen, my reflexes were

hyper, I was leaking protein, and my BP kept soaring. I was told to just relax.

Discharged to bed rest, that same evening I returned to the ER with 160s/110s.

The entire staff at this small town hospital were FREAKED OUT. They told me to

relax. They told the Air Vac nurse to prepare for seizures and possible

miscarriage. The big city hospital room was crammed with teams of doctors,

residents, and nurses. My baby was just barely 27 weeks gestation. I stayed

laying on my right side, in a dark hospital room for two weeks. Everyone told

me to take visitors and watch tv..you know...make the " best " of the situation.

I was. Self monitoring, I found the less I talked or moved or ate, the more

stable my BP was....but just barely. It was wild and unpredictable and I had

gained a reputation of being " excitable " despite my calm and gentle demeanor. I

was advised to " just try to relax. " By this time, I don't mind telling you, I

was about to scream " I AM relaxed!!!! I'm a very relaxed person!!!!!! " Doc

after doc shook his/her head saying, " this isn't presenting typically, " and " we

don't completely understand preeclampsia yet. " The magnesium distorted the

room. It made my head throb and my baby's heart rate drop. At 29 weeks, the BP

was so high, blood was being vacuumed out of the umbilical cord. My little girl

was delivered via c-section and was two pounds, three ounces. I stayed a patient

myself for five more days, tricking nurses by laying down to do my BP reads and

eventually be discharged. They clearly had no way to manage my BP, and I needed

to be with my baby girl. I stayed by her side in the NICU for two more months.

My blood pressure came down to 145/95. " If the pre-eclampsia isn't gone

immediately after delivery, it will be in a few weeks. " " Sometimes it takes a

few months. " " It can take up to a year. " " Sometimes pregnancy brings up

hypertension in people. You now have chronic hypertension. "

>

> Eighteen months passed. I ate boiled whole grains, green leafy vegetables,

and raw nuts/seeds. I drank 10 glasses of water a day. I took hawthorn berries

and omega 3s. No meat. No sugar. No alcohol. Nothing from a box. Gentle

walking. Sitting mediation. My BP kept climbing. Nurses at the local health

clinic (I was now uninsured,) told me to find new ways to relax. I'd smile and

say " ok. " Was it Vitamin D? Was it food allergies? Maybe I'm ridden with

anxiety and I don't even know it? AM I stressed? Why is it higher in the

mornings?...oh wait, not always. Why is it lower when I stand up?....oh wait,

not always. Is this BP cuff calibrated right? Why is it lower when my day is

actually stressful?...oh wait, not always.

>

> In the late summer of 2011, symptoms got worse. My heart had frequent,

intense palpitations, my mind was clouding over, my limbs were going numb. I

started accepting the possibility of deterioration and even death. I secretly

wrote letters to my children and laid out passwords for accounts my husband

would need to access. Granted, I was still moving around, but it felt so

hopeless and was clearly getting worse fast. I avoided any hospitals. We

didn't have any insurance, and frankly, I had already been and found them to be

out of ideas. My nurse practitioner decided to check my potassium levels and

they were [i don't remember the exact number] dangerously low (hello, stage 4!).

" It might be because of all your blood pressure medications. " Great. She asked

if I'd see one of her colleagues there at the clinic; a new doctor who just

arrived and was gaining a reputation for his knowledge base..

>

> At my first meeting in September 2011, with BP of 240/140, he said, " I think

you may have one of two types of adrenal tumors. " One blood and urine test

later, he says " your aldosterone level is high (19) compared to your renin

levels (undectable), but all other adrenal hormones look good. Paired with the

low potassium, I suspect you have hyperaldosteronism. The adrenals may be

malfunctioning OR there may be a mass causing the trouble. The good news is

this can be manageable. " With that, he put me on Spironolactone and within

weeks my BP dropped to 110s/70s for the first time in years. He petitioned the

director of the Community Health Center to approve a CT scan for me (free of

charge). A 1.5x2cm mass was found on my left adrenal. Every time I see him, I

want to give him a bear hug. So far, I've resisted, out of politeness....but it

still might have to happen.

>

> With the help of generous in-laws and the new PCIP insurance, I visited a

nephrologist at Mayo Clinic for the first time in Feb. 2012. They agreed with

my doc's findings and asked for additional 24-hr urine tests, blood work, and

salt loading tests. I had my follow-up visit today, and they confirmed PA.

Following what I'm told is current Mayo procedure, I am scheduled next for

adrenal vein sampling. If that mass is found to be the culprit, I am told I'm a

good candidate for surgery. They also told me the statistics are just not big

enough for any real numbers. My mass is " more likely than not " the cause of the

aldosterone. An adrenalectomy is " more likely than not " going to remedy my hbp.

The remaining adrenal will " more likely than not " be okay.

>

> I realize I am one of the lucky ones to have come this far in diagnosis. I've

felt at times I was losing my mind. Even now, no professional will confirm this

brain fog (I think I've dropped 100 IQ points), weight gain (30lbs in 6 months),

17 day menstrual cycles, or general feeling of " strangeness, " so I don't even

talk about it anymore. This condition has taken a few years of full attention

and almost took the life of my daughter. I am heartbroken for those who have

not yet been able to turn things around. May this forum, and maybe even my

story, give you hope and help you know we are all in this together.

>

March 29, 2012

Did BCPS worsen BP BEFORE?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 29, 2012, at 11:19, msmith_1928 <janeray1940@...> wrote:

Hello and welcome! Your story is similar to mine (except no pregnancies in my case), right down to the weight gain despite healthy eating. And the crazy menstrual cycles! I haven't seen too many others here besides myself mention that. Mine were an average of 13 days on, 13 days off, then repeat it all over again.

I had my adrenalectomy in October and am happy to say that the surgery resolved the HTN, low K, headaches, weight gain, and brain fog. My medical team really did think it would resolve the menstrual issues as well, but no luck there - but on the positive side, now that I'm no longer hypertensive I am able to take combined oral contraceptives again and am managing just fine that way - the estrogen doesn't seem to impact my BP in the least (118/78 last I checked).

Please keep us posted as to your progress, it sounds like you are in good hands and will be on the way to wellness soon! And if you have any questions about the surgery or the AVS, please ask

-msmith1928

Successful left laparoscopic adrenalectomy 10/13/11

>

> I can't tell you all what it means to me to have found this group. A special thanks to Dr. Grim for being here with us. I feel a little overwhelmed to be with a group of people who can understand what I've been going through. It's been a long, strange road.

>

> My name is Ann. I'm a 35yo female with Primary Hyperaldosteronism. Up til the age of 32, I had what I considered to be a very healthy life. I was bothered by migraines and sweaty hands and feet, but I just took that to be my lot in life. Dare I say, I was even proud of my health. I was a non-smoking, non-drinking vegetarian who ate hardly any processed foods, regularly exercised (albeit gently) and had found stress relief through yoga and meditation. A stay-at-home mom of one young son (at the time), I had little stress in life. I didn't see doctors often, but when I did everything always looked "just fine."

>

> At the age of 27, my son, Lucas, was born at home with a fast labor and no complications. Looking back, we remember our midwife casually mentioned my blood pressure was creeping up, but nothing too alarming or unsafe. This was the first time anyone had ever said I had high blood pressure. I had zero record in any part of my family history of HBP. In fact, my numbers had always been on the low end. After that, I would have a couple other mentions of high blood pressure, interspersed with mentions of low blood pressure, and I began to suspect I had the notorious "white coat syndrome." At the age of 32, in early summer, I became pregnant again. Immediately, my blood pressure readings with the same midwife, became surprisingly high. Given my "excellent" health and lack of any BP history, we just watched it. We told ourselves I was very excited to be pregnant, which I was. I was told to relax.

>

> By late summer, my numbers had crept toward 140/90, at which time I began working with an OB/GYN. A small amount of Labetalol helped a little, and I was told to relax. BP crept up. Meds were added and altered. By mid-November, I was hospitalized with 190s/120s. This was too early for pre-eclampsia, everyone said, but that's clearly what this is. My ankles were swollen, my reflexes were hyper, I was leaking protein, and my BP kept soaring. I was told to just relax. Discharged to bed rest, that same evening I returned to the ER with 160s/110s. The entire staff at this small town hospital were FREAKED OUT. They told me to relax. They told the Air Vac nurse to prepare for seizures and possible miscarriage. The big city hospital room was crammed with teams of doctors, residents, and nurses. My baby was just barely 27 weeks gestation. I stayed laying on my right side, in a dark hospital room for two weeks. Everyone told me to take visitors and watch tv..you know...make

the "best" of the situation. I was. Self monitoring, I found the less I talked or moved or ate, the more stable my BP was....but just barely. It was wild and unpredictable and I had gained a reputation of being "excitable" despite my calm and gentle demeanor. I was advised to "just try to relax." By this time, I don't mind telling you, I was about to scream "I AM relaxed!!!! I'm a very relaxed person!!!!!!" Doc after doc shook his/her head saying, "this isn't presenting typically," and "we don't completely understand preeclampsia yet." The magnesium distorted the room. It made my head throb and my baby's heart rate drop. At 29 weeks, the BP was so high, blood was being vacuumed out of the umbilical cord. My little girl was delivered via c-section and was two pounds, three ounces. I stayed a patient myself for five more days, tricking nurses by laying down to do my BP reads and eventually be discharged. They

clearly had no way to manage my BP, and I needed to be with my baby girl. I stayed by her side in the NICU for two more months. My blood pressure came down to 145/95. "If the pre-eclampsia isn't gone immediately after delivery, it will be in a few weeks." "Sometimes it takes a few months." "It can take up to a year." "Sometimes pregnancy brings up hypertension in people. You now have chronic hypertension."

>

> Eighteen months passed. I ate boiled whole grains, green leafy vegetables, and raw nuts/seeds. I drank 10 glasses of water a day. I took hawthorn berries and omega 3s. No meat. No sugar. No alcohol. Nothing from a box. Gentle walking. Sitting mediation. My BP kept climbing. Nurses at the local health clinic (I was now uninsured,) told me to find new ways to relax. I'd smile and say "ok." Was it Vitamin D? Was it food allergies? Maybe I'm ridden with anxiety and I don't even know it? AM I stressed? Why is it higher in the mornings?...oh wait, not always. Why is it lower when I stand up?....oh wait, not always. Is this BP cuff calibrated right? Why is it lower when my day is actually stressful?...oh wait, not always.

>

> In the late summer of 2011, symptoms got worse. My heart had frequent, intense palpitations, my mind was clouding over, my limbs were going numb. I started accepting the possibility of deterioration and even death. I secretly wrote letters to my children and laid out passwords for accounts my husband would need to access. Granted, I was still moving around, but it felt so hopeless and was clearly getting worse fast. I avoided any hospitals. We didn't have any insurance, and frankly, I had already been and found them to be out of ideas. My nurse practitioner decided to check my potassium levels and they were [i don't remember the exact number] dangerously low (hello, stage 4!). "It might be because of all your blood pressure medications." Great. She asked if I'd see one of her colleagues there at the clinic; a new doctor who just arrived and was gaining a reputation for his knowledge base..

>

> At my first meeting in September 2011, with BP of 240/140, he said, "I think you may have one of two types of adrenal tumors." One blood and urine test later, he says "your aldosterone level is high (19) compared to your renin levels (undectable), but all other adrenal hormones look good. Paired with the low potassium, I suspect you have hyperaldosteronism. The adrenals may be malfunctioning OR there may be a mass causing the trouble. The good news is this can be manageable." With that, he put me on Spironolactone and within weeks my BP dropped to 110s/70s for the first time in years. He petitioned the director of the Community Health Center to approve a CT scan for me (free of charge). A 1.5x2cm mass was found on my left adrenal. Every time I see him, I want to give him a bear hug. So far, I've resisted, out of politeness....but it still might have to happen.

>

> With the help of generous in-laws and the new PCIP insurance, I visited a nephrologist at Mayo Clinic for the first time in Feb. 2012. They agreed with my doc's findings and asked for additional 24-hr urine tests, blood work, and salt loading tests. I had my follow-up visit today, and they confirmed PA. Following what I'm told is current Mayo procedure, I am scheduled next for adrenal vein sampling. If that mass is found to be the culprit, I am told I'm a good candidate for surgery. They also told me the statistics are just not big enough for any real numbers. My mass is "more likely than not" the cause of the aldosterone. An adrenalectomy is "more likely than not" going to remedy my hbp. The remaining adrenal will "more likely than not" be okay.

>

> I realize I am one of the lucky ones to have come this far in diagnosis. I've felt at times I was losing my mind. Even now, no professional will confirm this brain fog (I think I've dropped 100 IQ points), weight gain (30lbs in 6 months), 17 day menstrual cycles, or general feeling of "strangeness," so I don't even talk about it anymore. This condition has taken a few years of full attention and almost took the life of my daughter. I am heartbroken for those who have not yet been able to turn things around. May this forum, and maybe even my story, give you hope and help you know we are all in this together.

>

March 29, 2012

Not one bit! I went off them in the first place before my PA diagnosis, to see

if they were the cause of my HTN. It made no difference at all, but once I went

off them I couldn't find a doctor who would prescribe them out of fear that the

estrogen would raise my BP (even though I had already shown that it would not).

> > >

> > > I can't tell you all what it means to me to have found this group. A

special thanks to Dr. Grim for being here with us. I feel a little overwhelmed

to be with a group of people who can understand what I've been going through.

It's been a long, strange road.

> > >

> > > My name is Ann. I'm a 35yo female with Primary Hyperaldosteronism. Up til

the age of 32, I had what I considered to be a very healthy life. I was bothered

by migraines and sweaty hands and feet, but I just took that to be my lot in

life. Dare I say, I was even proud of my health. I was a non-smoking,

non-drinking vegetarian who ate hardly any processed foods, regularly exercised

(albeit gently) and had found stress relief through yoga and meditation. A

stay-at-home mom of one young son (at the time), I had little stress in life. I

didn't see doctors often, but when I did everything always looked " just fine. "

> > >

> > > At the age of 27, my son, Lucas, was born at home with a fast labor and no

complications. Looking back, we remember our midwife casually mentioned my blood

pressure was creeping up, but nothing too alarming or unsafe. This was the first

time anyone had ever said I had high blood pressure. I had zero record in any

part of my family history of HBP. In fact, my numbers had always been on the low

end. After that, I would have a couple other mentions of high blood pressure,

interspersed with mentions of low blood pressure, and I began to suspect I had

the notorious " white coat syndrome. " At the age of 32, in early summer, I became

pregnant again. Immediately, my blood pressure readings with the same midwife,

became surprisingly high. Given my " excellent " health and lack of any BP

history, we just watched it. We told ourselves I was very excited to be

pregnant, which I was. I was told to relax.

> > >

> > > By late summer, my numbers had crept toward 140/90, at which time I began

working with an OB/GYN. A small amount of Labetalol helped a little, and I was

told to relax. BP crept up. Meds were added and altered. By mid-November, I was

hospitalized with 190s/120s. This was too early for pre-eclampsia, everyone

said, but that's clearly what this is. My ankles were swollen, my reflexes were

hyper, I was leaking protein, and my BP kept soaring. I was told to just relax.

Discharged to bed rest, that same evening I returned to the ER with 160s/110s.

The entire staff at this small town hospital were FREAKED OUT. They told me to

relax. They told the Air Vac nurse to prepare for seizures and possible

miscarriage. The big city hospital room was crammed with teams of doctors,

residents, and nurses. My baby was just barely 27 weeks gestation. I stayed

laying on my right side, in a dark hospital room for two weeks. Everyone told me

to take visitors and watch tv..you know...make the " best " of the situation. I

was. Self monitoring, I found the less I talked or moved or ate, the more stable

my BP was....but just barely. It was wild and unpredictable and I had gained a

reputation of being " excitable " despite my calm and gentle demeanor. I was

advised to " just try to relax. " By this time, I don't mind telling you, I was

about to scream " I AM relaxed!!!! I'm a very relaxed person!!!!!! " Doc after doc

shook his/her head saying, " this isn't presenting typically, " and " we don't

completely understand preeclampsia yet. " The magnesium distorted the room. It

made my head throb and my baby's heart rate drop. At 29 weeks, the BP was so

high, blood was being vacuumed out of the umbilical cord. My little girl was

delivered via c-section and was two pounds, three ounces. I stayed a patient

myself for five more days, tricking nurses by laying down to do my BP reads and

eventually be discharged. They clearly had no way to manage my BP, and I needed

to be with my baby girl. I stayed by her side in the NICU for two more months.

My blood pressure came down to 145/95. " If the pre-eclampsia isn't gone

immediately after delivery, it will be in a few weeks. " " Sometimes it takes a

few months. " " It can take up to a year. " " Sometimes pregnancy brings up

hypertension in people. You now have chronic hypertension. "

> > >

> > > Eighteen months passed. I ate boiled whole grains, green leafy vegetables,

and raw nuts/seeds. I drank 10 glasses of water a day. I took hawthorn berries

and omega 3s. No meat. No sugar. No alcohol. Nothing from a box. Gentle walking.

Sitting mediation. My BP kept climbing. Nurses at the local health clinic (I was

now uninsured,) told me to find new ways to relax. I'd smile and say " ok. " Was

it Vitamin D? Was it food allergies? Maybe I'm ridden with anxiety and I don't

even know it? AM I stressed? Why is it higher in the mornings?...oh wait, not

always. Why is it lower when I stand up?....oh wait, not always. Is this BP cuff

calibrated right? Why is it lower when my day is actually stressful?...oh wait,

not always.

> > >

> > > In the late summer of 2011, symptoms got worse. My heart had frequent,

intense palpitations, my mind was clouding over, my limbs were going numb. I

started accepting the possibility of deterioration and even death. I secretly

wrote letters to my children and laid out passwords for accounts my husband

would need to access. Granted, I was still moving around, but it felt so

hopeless and was clearly getting worse fast. I avoided any hospitals. We didn't

have any insurance, and frankly, I had already been and found them to be out of

ideas. My nurse practitioner decided to check my potassium levels and they were

[i don't remember the exact number] dangerously low (hello, stage 4!). " It might

be because of all your blood pressure medications. " Great. She asked if I'd see

one of her colleagues there at the clinic; a new doctor who just arrived and was

gaining a reputation for his knowledge base..

> > >

> > > At my first meeting in September 2011, with BP of 240/140, he said, " I

think you may have one of two types of adrenal tumors. " One blood and urine test

later, he says " your aldosterone level is high (19) compared to your renin

levels (undectable), but all other adrenal hormones look good. Paired with the

low potassium, I suspect you have hyperaldosteronism. The adrenals may be

malfunctioning OR there may be a mass causing the trouble. The good news is this

can be manageable. " With that, he put me on Spironolactone and within weeks my

BP dropped to 110s/70s for the first time in years. He petitioned the director

of the Community Health Center to approve a CT scan for me (free of charge). A

1.5x2cm mass was found on my left adrenal. Every time I see him, I want to give

him a bear hug. So far, I've resisted, out of politeness....but it still might

have to happen.

> > >

> > > With the help of generous in-laws and the new PCIP insurance, I visited a

nephrologist at Mayo Clinic for the first time in Feb. 2012. They agreed with my

doc's findings and asked for additional 24-hr urine tests, blood work, and salt

loading tests. I had my follow-up visit today, and they confirmed PA. Following

what I'm told is current Mayo procedure, I am scheduled next for adrenal vein

sampling. If that mass is found to be the culprit, I am told I'm a good

candidate for surgery. They also told me the statistics are just not big enough

for any real numbers. My mass is " more likely than not " the cause of the

aldosterone. An adrenalectomy is " more likely than not " going to remedy my hbp.

The remaining adrenal will " more likely than not " be okay.

> > >

> > > I realize I am one of the lucky ones to have come this far in diagnosis.

I've felt at times I was losing my mind. Even now, no professional will confirm

this brain fog (I think I've dropped 100 IQ points), weight gain (30lbs in 6

months), 17 day menstrual cycles, or general feeling of " strangeness, " so I

don't even talk about it anymore. This condition has taken a few years of full

attention and almost took the life of my daughter. I am heartbroken for those

who have not yet been able to turn things around. May this forum, and maybe even

my story, give you hope and help you know we are all in this together.

> > >

> >

>

March 29, 2012

You also want to get age and cause of death as far. Ack as u can got. See welcome link to NIH family health tree program. Complete and take to team. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 28, 2012, at 22:05, Ann Marie Hardesty <annmariehardesty@...> wrote:

None. I even asked everyone alive to "think really hard." No cardiovascular disease. No potassium issues. From: Clarence Grim <lowerbp2@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Wednesday, March 28, 2012 10:02 PM Subject: Re: My PA Story

Thanks for your story. Sorry it took so long to figure out what is the problem. Keep us posted on your progress.Any other family Hx of this problem?May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 28, 2012, at 21:52, Ann Marie <annmariehardesty@...> wrote:

I can't tell you all what it means to me to have found this group. A special thanks to Dr. Grim for being here with us. I feel a little overwhelmed to be with a group of people who can understand what I've been going through. It's been a long, strange road.

My name is Ann. I'm a 35yo female with Primary Hyperaldosteronism. Up til the age of 32, I had what I considered to be a very healthy life. I was bothered by migraines and sweaty hands and feet, but I just took that to be my lot in life. Dare I say, I was even proud of my health. I was a non-smoking, non-drinking vegetarian who ate hardly any processed foods, regularly exercised (albeit gently) and had found stress relief through yoga and meditation. A stay-at-home mom of one young son (at the time), I had little stress in life. I didn't see doctors often, but when I did everything always looked "just fine."

At the age of 27, my son, Lucas, was born at home with a fast labor and no complications. Looking back, we remember our midwife casually mentioned my blood pressure was creeping up, but nothing too alarming or unsafe. This was the first time anyone had ever said I had high blood pressure. I had zero record in any part of my family history of HBP. In fact, my numbers had always been on the low end. After that, I would have a couple other mentions of high blood pressure, interspersed with mentions of low blood pressure, and I began to suspect I had the notorious "white coat syndrome." At the age of 32, in early summer, I became pregnant again. Immediately, my blood pressure readings with the same midwife, became surprisingly high. Given my "excellent" health and lack of any BP history, we just watched it. We told ourselves I was very excited to be pregnant, which I was. I was told to relax.

By late summer, my numbers had crept toward 140/90, at which time I began working with an OB/GYN. A small amount of Labetalol helped a little, and I was told to relax. BP crept up. Meds were added and altered. By mid-November, I was hospitalized with 190s/120s. This was too early for pre-eclampsia, everyone said, but that's clearly what this is. My ankles were swollen, my reflexes were hyper, I was leaking protein, and my BP kept soaring. I was told to just relax. Discharged to bed rest, that same evening I returned to the ER with 160s/110s. The entire staff at this small town hospital were FREAKED OUT. They told me to relax. They told the Air Vac nurse to prepare for seizures and possible miscarriage. The big city hospital room was crammed with teams of doctors, residents, and nurses. My baby was just barely 27 weeks gestation. I stayed laying on my right side, in a dark hospital room for two weeks. Everyone told me to take visitors and

watch tv..you know...make the

"best" of the situation. I was. Self monitoring, I found the less I talked or moved or ate, the more stable my BP was....but just barely. It was wild and unpredictable and I had gained a reputation of being "excitable" despite my calm and gentle demeanor. I was advised to "just try to relax." By this time, I don't mind telling you, I was about to scream "I AM relaxed!!!! I'm a very relaxed person!!!!!!" Doc after doc shook his/her head saying, "this isn't presenting typically," and "we don't completely understand preeclampsia yet." The magnesium distorted the room. It made my head throb and my baby's heart rate drop. At 29 weeks, the BP was so high, blood was being vacuumed out of the umbilical cord. My little girl was delivered via c-section and was two pounds, three ounces. I stayed a patient myself for five more days, tricking nurses by laying down to do my BP reads and eventually be discharged. They clearly

had no way to manage my BP, and I needed to be with my baby girl. I stayed by her side in the NICU for two more months. My blood pressure came down to 145/95. "If the pre-eclampsia isn't gone immediately after delivery, it will be in a few weeks." "Sometimes it takes a few months." "It can take up to a year." "Sometimes pregnancy brings up hypertension in people. You now have chronic hypertension."

Eighteen months passed. I ate boiled whole grains, green leafy vegetables, and raw nuts/seeds. I drank 10 glasses of water a day. I took hawthorn berries and omega 3s. No meat. No sugar. No alcohol. Nothing from a box. Gentle walking. Sitting mediation. My BP kept climbing. Nurses at the local health clinic (I was now uninsured,) told me to find new ways to relax. I'd smile and say "ok." Was it Vitamin D? Was it food allergies? Maybe I'm ridden with anxiety and I don't even know it? AM I stressed? Why is it higher in the mornings?...oh wait, not always. Why is it lower when I stand up?....oh wait, not always. Is this BP cuff calibrated right? Why is it lower when my day is actually stressful?...oh wait, not always.

In the late summer of 2011, symptoms got worse. My heart had frequent, intense palpitations, my mind was clouding over, my limbs were going numb. I started accepting the possibility of deterioration and even death. I secretly wrote letters to my children and laid out passwords for accounts my husband would need to access. Granted, I was still moving around, but it felt so hopeless and was clearly getting worse fast. I avoided any hospitals. We didn't have any insurance, and frankly, I had already been and found them to be out of ideas. My nurse practitioner decided to check my potassium levels and they were [i don't remember the exact number] dangerously low (hello, stage 4!). "It might be because of all your blood pressure medications." Great. She asked if I'd see one of her colleagues there at the clinic; a new doctor who just arrived and was gaining a reputation for his knowledge base..

At my first meeting in September 2011, with BP of 240/140, he said, "I think you may have one of two types of adrenal tumors." One blood and urine test later, he says "your aldosterone level is high (19) compared to your renin levels (undectable), but all other adrenal hormones look good. Paired with the low potassium, I suspect you have hyperaldosteronism. The adrenals may be malfunctioning OR there may be a mass causing the trouble. The good news is this can be manageable." With that, he put me on Spironolactone and within weeks my BP dropped to 110s/70s for the first time in years. He petitioned the director of the Community Health Center to approve a CT scan for me (free of charge). A 1.5x2cm mass was found on my left adrenal. Every time I see him, I want to give him a bear hug. So far, I've resisted, out of politeness....but it still might have to happen.

With the help of generous in-laws and the new PCIP insurance, I visited a nephrologist at Mayo Clinic for the first time in Feb. 2012. They agreed with my doc's findings and asked for additional 24-hr urine tests, blood work, and salt loading tests. I had my follow-up visit today, and they confirmed PA. Following what I'm told is current Mayo procedure, I am scheduled next for adrenal vein sampling. If that mass is found to be the culprit, I am told I'm a good candidate for surgery. They also told me the statistics are just not big enough for any real numbers. My mass is "more likely than not" the cause of the aldosterone. An adrenalectomy is "more likely than not" going to remedy my hbp. The remaining adrenal will "more likely than not" be okay.

I realize I am one of the lucky ones to have come this far in diagnosis. I've felt at times I was losing my mind. Even now, no professional will confirm this brain fog (I think I've dropped 100 IQ points), weight gain (30lbs in 6 months), 17 day menstrual cycles, or general feeling of "strangeness," so I don't even talk about it anymore. This condition has taken a few years of full attention and almost took the life of my daughter. I am heartbroken for those who have not yet been able to turn things around. May this forum, and maybe even my story, give you hope and help you know we are all in this together.

March 30, 2012

Wow. Thank you so much for replying!!! Yeah, the weight gain and menstrual

cycles have been very frustrating. I'm so grateful to my medical team, but they

are not interested in talking about those things. My Doc just switched me to

eplerenone. I'm about to go pick it up, and I'm curious whether I'll see some

big changes. Could you ever tell which symptoms were from the Spiro vs. the PA?

Also, I would love your experience of the avs. It sounds like there's nothing I

really need to prepare for. Is there anything you would have liked to known

beforehand? I'm going to look for your file to read your story. Thank you so

much for sharing.

> >

> > I can't tell you all what it means to me to have found this group. A

special thanks to Dr. Grim for being here with us. I feel a little overwhelmed

to be with a group of people who can understand what I've been going through.

It's been a long, strange road.

> >

> > My name is Ann. I'm a 35yo female with Primary Hyperaldosteronism. Up til

the age of 32, I had what I considered to be a very healthy life. I was

bothered by migraines and sweaty hands and feet, but I just took that to be my

lot in life. Dare I say, I was even proud of my health. I was a non-smoking,

non-drinking vegetarian who ate hardly any processed foods, regularly exercised

(albeit gently) and had found stress relief through yoga and meditation. A

stay-at-home mom of one young son (at the time), I had little stress in life. I

didn't see doctors often, but when I did everything always looked " just fine. "

> >

> > At the age of 27, my son, Lucas, was born at home with a fast labor and no