Introducing myself

January 21, 2012

The doctor we are going told us about this site to. In fact, anytime we had a question it seemed like he would tells to go to this site for answers. Mom of jaylinLive, laugh, and loveJoyOn Jan 20, 2012, at 10:59 AM, heather@... wrote:

I didnt know that...Good deal! Im glad their telling new parents about CAST!

HRH

> Salt lake city Utah. Its a shriners hospital that was one of the first

> main centers for treatment (someone please correct me if im wrong about

> that) They are wonderful but that being said I'm sure there are other

> wonderful places for treatment around the county and we need even more! I

> think you may hear a lot of folks here talk about them because they do

> tell their paitents about the cast support group. At least they did me.

> And yes they did go over every detail prior to casting with us. We heard

> about them from heather but choose them because the pediatrics ortho

> doctor we were seeing locally referred us that way.

>

> Amber

>

> Ok what does SLC stand for? Where is it?

>> I'm hearing all these awesome things about this place and wishing I

>> could

>> be s part of it all. Is this place that good? Did they tell you all

>> about

>> the casting before hand?

>>

>> Live, laugh, and love

>> Joy

>>

>> On Jan 17, 2012, at 5:09 PM, "Amber Scholl" <amber@...> wrote:

>>

>>> Hi ,

>>> We also go to SLC & have nothing but the best to say about the care my

>>> son

>>> has received. Levi is in his 2nd cast & is almost 23 mos old. (2 @ end

>>> of

>>> FEB) We will be in SLC on FEB 29th also! Levi gets his 3rd cast done

>>> March 1 & we go in sometime late afternoon the day before (when we

>>> land)

>>> to get the old one cut off. If your baby girl is casted right away (as

>>> in

>>> your 1st trip out) maybe we will see you guys there getting casted

>>> also.

>>> Its a lot that 1st time, but SLC made it all so smooth. Levi had an MRI

>>> prior to getting accepted as a patient so I have no idea about if they

>>> will cast without it, but I'm sure they will tell you. We had a similar

>>> choice for treatment...we could have gone closer to home, but we wanted

>>> an

>>> experienced doc & a cast made out of POP instead of only fiberglass.

>>> Can

>>> I ask why you suspect Marfan's syndrome? I ask because when we 1st went

>>> down this road we got a lot of comments about my husband's height

>>> (6'7'')

>>> But everyone in his whole family is tall (at least 6' or over) so I've

>>> just thought genetics....also SLC has met my husband in person & never

>>> suggested testing, but it's everyone in the medical community's 1st

>>> question "Is your whole family tall"....I've often wondered if they

>>> were

>>> trying to rule out Marfan's.

>>> Amber

>>> mommy to Levi

>>> SLC 2nd cast 31* holding at 16/17* in cast with no rotation!

>>>

>>> PS. please feel free to email me if I can help you with any questions

>>> at

>>> all! I remember how overwhelming the 1st time was...where to stay..

>>> what

>>> to expect...what to bring...its a lot!

>>>

>>> > Hi, I am . We found our 17.5 month old daughter has a 25*

>>> curve.

>>> > The initial report was 20 but after the Ortho read it they said 25,

>>> and

>>> > that was about 6 weeks ago it was taken. We have an appointment at

>>> SLC

>>> on

>>> > Feb 29. I am currently waiting to hear back if they will do a casting

>>> at

>>> > her first appointment. She has not had an MRI yet, so I don't know if

>>> > that will hold them back at all. I don't care if I have to be there

>>> for a

>>> > week, I really want her casted like yesterday. She has been getting

>>> > chiropractic adjustments in the meantime. We also found out this week

>>> > that my 8 year old son has a moderate curve, but we have yet to hear

>>> the

>>> > actual degree. This has all hit like a ton of bricks. What an

>>> emotional

>>> > roller coaster! My husband also has scoliosis and has rods and fusion

>>> at

>>> > 16, so we know what that is like and really don't want them to have

>>> to

>>> go

>>> > what he has gone through and the pain he still has. I have so much

>>> guilt

>>> > for not finding their diagnosis sooner. We are in Southern California

>>> by

>>> > Loma and they talked to us yesterday and said they can and do

>>> Mehta

>>> > casting like SLC (traction, table, etc.) but we know our insurance

>>> would

>>> > only pay half. Plus there just seems to be a comfort to me when I

>>> think of

>>> > SLC and the time they have been doing it and what I have read about

>>> how

>>> > supportive they are for any testing (I have suspicions that my

>>> husband

>>> and

>>> > kids have Marfans). I am so grateful to have found this site and to

>>> be

>>> > gathering info as we wait for our appointment.

>>> >

>>>

>>

>

January 21, 2012

Good to know!

> The doctor we are going told us about this site to. In fact, anytime we

> had a question it seemed like he would tells to go to this site for

> answers.

> Mom of jaylin

>

> Live, laugh, and love

> Joy

>

> On Jan 20, 2012, at 10:59 AM, heather@... wrote:

>

>> I didnt know that...Good deal! Im glad their telling new parents about

>> CAST!

>> HRH

>>

>> > Salt lake city Utah. Its a shriners hospital that was one of the first

>> > main centers for treatment (someone please correct me if im wrong

>> about

>> > that) They are wonderful but that being said I'm sure there are other

>> > wonderful places for treatment around the county and we need even

>> more! I

>> > think you may hear a lot of folks here talk about them because they do

>> > tell their paitents about the cast support group. At least they did

>> me.

>> > And yes they did go over every detail prior to casting with us. We

>> heard

>> > about them from heather but choose them because the pediatrics ortho

>> > doctor we were seeing locally referred us that way.

>> >

>> > Amber

>> >

>> > Ok what does SLC stand for? Where is it?

>> >> I'm hearing all these awesome things about this place and wishing I

>> >> could

>> >> be s part of it all. Is this place that good? Did they tell you all

>> >> about

>> >> the casting before hand?

>> >>

>> >> Live, laugh, and love

>> >> Joy

>> >>

>> >> On Jan 17, 2012, at 5:09 PM, " Amber Scholl " <amber@...>

>> wrote:

>> >>

>> >>> Hi ,

>> >>> We also go to SLC & have nothing but the best to say about the care

>> my

>> >>> son

>> >>> has received. Levi is in his 2nd cast & is almost 23 mos old. (2 @

>> end

>> >>> of

>> >>> FEB) We will be in SLC on FEB 29th also! Levi gets his 3rd cast done

>> >>> March 1 & we go in sometime late afternoon the day before (when we

>> >>> land)

>> >>> to get the old one cut off. If your baby girl is casted right away

>> (as

>> >>> in

>> >>> your 1st trip out) maybe we will see you guys there getting casted

>> >>> also.

>> >>> Its a lot that 1st time, but SLC made it all so smooth. Levi had an

>> MRI

>> >>> prior to getting accepted as a patient so I have no idea about if

>> they

>> >>> will cast without it, but I'm sure they will tell you. We had a

>> similar

>> >>> choice for treatment...we could have gone closer to home, but we

>> wanted

>> >>> an

>> >>> experienced doc & a cast made out of POP instead of only fiberglass.

>> >>> Can

>> >>> I ask why you suspect Marfan's syndrome? I ask because when we 1st

>> went

>> >>> down this road we got a lot of comments about my husband's height

>> >>> (6'7'')

>> >>> But everyone in his whole family is tall (at least 6' or over) so

>> I've

>> >>> just thought genetics....also SLC has met my husband in person &

>> never

>> >>> suggested testing, but it's everyone in the medical community's 1st

>> >>> question " Is your whole family tall " ....I've often wondered if they

>> >>> were

>> >>> trying to rule out Marfan's.

>> >>> Amber

>> >>> mommy to Levi

>> >>> SLC 2nd cast 31* holding at 16/17* in cast with no rotation!

>> >>>

>> >>> PS. please feel free to email me if I can help you with any

>> questions

>> >>> at

>> >>> all! I remember how overwhelming the 1st time was...where to stay..

>> >>> what

>> >>> to expect...what to bring...its a lot!

>> >>>

>> >>> > Hi, I am . We found our 17.5 month old daughter has a 25*

>> >>> curve.

>> >>> > The initial report was 20 but after the Ortho read it they said

>> 25,

>> >>> and

>> >>> > that was about 6 weeks ago it was taken. We have an appointment at

>> >>> SLC

>> >>> on

>> >>> > Feb 29. I am currently waiting to hear back if they will do a

>> casting

>> >>> at

>> >>> > her first appointment. She has not had an MRI yet, so I don't know

>> if

>> >>> > that will hold them back at all. I don't care if I have to be

>> there

>> >>> for a

>> >>> > week, I really want her casted like yesterday. She has been

>> getting

>> >>> > chiropractic adjustments in the meantime. We also found out this

>> week

>> >>> > that my 8 year old son has a moderate curve, but we have yet to

>> hear

>> >>> the

>> >>> > actual degree. This has all hit like a ton of bricks. What an

>> >>> emotional

>> >>> > roller coaster! My husband also has scoliosis and has rods and

>> fusion

>> >>> at

>> >>> > 16, so we know what that is like and really don't want them to

>> have

>> >>> to

>> >>> go

>> >>> > what he has gone through and the pain he still has. I have so much

>> >>> guilt

>> >>> > for not finding their diagnosis sooner. We are in Southern

>> California

>> >>> by

>> >>> > Loma and they talked to us yesterday and said they can and

>> do

>> >>> Mehta

>> >>> > casting like SLC (traction, table, etc.) but we know our insurance

>> >>> would

>> >>> > only pay half. Plus there just seems to be a comfort to me when I

>> >>> think of

>> >>> > SLC and the time they have been doing it and what I have read

>> about

>> >>> how

>> >>> > supportive they are for any testing (I have suspicions that my

>> >>> husband

>> >>> and

>> >>> > kids have Marfans). I am so grateful to have found this site and

>> to

>> >>> be

>> >>> > gathering info as we wait for our appointment.

>> >>> >

>> >>>

>> >>

>> >

>>

>

April 22, 2012

Greetings Dr. Grim & co!

I thought I would send out a message just to introduce myself, I joined the group just 2 days ago. I have already benefited greatly from all the discussions and am glad I was able to join.

Just a brief description to start about my situation. I am a 31 year old female, and have only within the last 2-3 months been diagnosed with hyperaldosteronism. It's hard for me to speculate exactly when my symptoms started. I have 3 children, and my oldest is 8 1/2 years old. I had " pregnancy induced " hypertension with my first child, I never had to go on medication, and my BP only got in the 150/90s range in the last trimester. This was in 2003. My BP went back to normal shortly after I delivered. In August of 2007, right before I became pregnant with my second child, I remember my BP was 140/90s.at my OB's office. This was the first time in my life my BP was high other than with pregnancy. I remember thinking it must have been a fluke. I struggled with BP all throughout my 2nd pregnancy, I was never put on meds although I got into the 160/90s range for the whole last trimester. My OB never showed much concern, because I had been " running a little high before pregnancy. " After I delivered my 2nd child in May 2008 my BP never went back down. I always eat horribly when I'm pregnant, I gained 70 lbs with my 2nd child. So my PCP monitored my BP for a full year, and I lost all my pregnancy weight, and tried to limit my sodium intake. My BP stayed in the 150/90s range for the most part, even after these efforts. My PCP at this point told me I should go on meds. This was the summer of 2009. I was on one medication, I can't remember the name of it, for 2-3 months, with little results. My PCP just kept upping the dosage. About this time, a co-worker discussed how her dermatologist recommended spirinolactone to her because it helped with acne (and obviously my co-worker had high BP). Ironically enough, I had been struggling with acne WAY worse than when I was a teenager for about 4-5 years. I suggested this to my PCP, and he agreed to prescribe me spiro. Really. I couldn't make this stuff up lol. I can't remember the exact dosage I was on at the time....none of this was too important in the good old oblivious days, you know? But from what I've been reading I think I was on a pretty high dose. At least 100 mg a day.....maybe even 200 mg? I can look into it.

In April of 2011 I got pregnant with my 3rd child (Due January 30 2012). This pregnancy was actually a " surprise " for us, we were preventing at the time. So as soon as I could I contacted my PCP and he changed my BP meds to lebatelol, which is considered safe for pregnancy. Although I have been researching the fact that pregnancy hormones help keep aldosterone in check...I don't think this worked very well for me. After I went off the spiro, my BP started climbing right away. I started out on 100 mg lebatelol 2x day, and went to 200 mg 2xday in about July. In August they put me on Nifedical XL 30 mg in addition to the lebatelol. My BP at this time was usually about 160/100s. After about a month on both medications my BP went down slightly and hovered around 150/90s again. In November my BP was up again and they found a slight amount of protein in my urine. They sent me down for a stress test and took some blood samples, and I was to collect my urine for 24 hours with the chance of a preeclampsia diagnosis and complete bed rest. (This was November 10th based on my history with pharmacy). Ironically enough, my blood test showed my K was down to 2.4 . Since I was in the hospital anyway, they gave me an IV of K (man that hurts!!) and sent me home. My 24 hour protein was borderline, Dr. said if it's over 300 he would keep me on bed rest but mine was 298. BP was very hard to control the remainder of my pregnancy, and I had 2 UTI's (no symptoms whatsoever, but blood was in my urine). Potassium was low again on November 28th--2.8, and I was prescribed Potassium 20 Meq 2 tabs 2xday. My OB said my low K was a mystery, and didn't seem too inclined to investigate further. Apparently my problem should have been solved, because we did not test my blood again during my pregnancy.

I delivered my 3rd child 2 weeks & 2 days early, on January 13th of this year. He was born with a genetic blood defect, (called G6PD deficiency for those that are familiar or curious), and he spent the first 11 days in the NICU. I only mention this because I probably would have been more quick to go to the Dr. myself if I wasn't so concerned with my child's welfare. My son had 2 blood transfusions in his first 5 weeks of life. Probably when he was about 3 weeks old i noticed my legs were " aching " all the time. I was also drinking about 2 gallons of water a day. And of course I was completely exhausted. It took me awhile to decide to go to the Dr., becuase I had a newborn! Of course I was going to be tired, and the thirst I believed to be from nursing. But after a couple of weeks I was worried I had diabetes or something. I went to my PCP (who is AMAZING) and he ran all kinds of blood tests. It was discovered my K was at 2.0. He put me on K 20 Meq 1 tab 3x day right away. He also called the lab and asked them to process a test for aldosterone that SAME DAY! (I told you he's amazing! lol). It took about 3-4 days for the lab results to come back though. As soon as the Dr. office called telling me my Potassium was low, I was kind of fed up. I mean, 3x in a few months! I knew this wasn't normal. So I got online and started researching like crazy. The first day I did research I thought my kidneys were failing from my high BP ha ha. But the second day I discovered hyperaldosteronism. Everything fit. And that day I found out that's what my PCP thought I had too.

When my test came back positive for Aldosterone the first week of March (it was in the 70's and " normal " for this lab was 27. I still need to request printouts of all my lab work though) my PCP referred me to an endocrinologist, and I got in the next week. She asked me what brought me in that day and I said " My Dr. and I think I have hyperaldosteronism. " She said " Ha ha ha! What makes you think that, hyperaldosteronism is so rare! " I wanted to be like, what do you think lady? All the diagnostic evidence! Sheesh. So for about 4 weeks her " goal " was to " confirm " my hyperaldosteronism diagnosis. She stated that we needed to get my K back up to normal, because aldosterone will always be high if K is low. --Dr. Grim, is this true to your knowledge? Just curious. At this time, I am on K 20Meq 2 tabs, 3x a day (so 6 tabs a day). Even with this amount of K, the closest we came to a " normal " K was 3.1 (and I will add this was with a tourniquet lol). She said this was " close enough " though and re-measured my Aldosterone. It was 95. This endocrinologist felt my condition is a little out of her comfort zone, so at this time I have been referred to the Sitmeman Center for Advanced Medicine in St. Louis Missiouri, which is affiliated with Jewish Hospital (I live in a suburb of St. Louis, only about 20 min away). The earliest the Siteman Center could get me in was May 17th (the appointment was made April 4th).

I know I shouldn't be doing this, but my PCP prescribed me spirinolactone about 5 weeks ago " just in case " and I started taking it about 1 1/2 weeks ago. I'm on 100 mg 1x day. I say I know I shouldn't because I'm sure it will effect my future testing, but I just can't help it! I have had my leg muscles aching for weeks now, and these BP headaches are extreme and I am starting to experience blurred vision and my PCP said he can start to see some damage in my eyes from my high BP. Right now it's running 160s over 100s for the most part, which I know doesn't sound that crazy, but considering it's been a pretty big jump within just a year or two. My PCP ordered a BMP on Friday and my K level was 3.7, but after reading all the feedback on usage of the tourniquet, etc, I doubt this is accurate. I don't think my legs would still be aching with a 3.7, would they? I understand it takes a few weeks for spiro to really make a difference in some cases, doesn't it? Another question for Dr. Grim: Right now all I have is a automated BP cuff I bought about 4 years ago, but for the most part it seems pretty accurate. I have been instructed to take my BP first think in the morning. It seems the first time I take my BP, it is always something like 174/114. Then I re-take it and it's 163/104 (or approximately 10 less on each). Is this a likely phenomenon, or just potentially faulty equipment? Could it be because of how I'm positioned, or becuase I was walking around & just sat down, etc?

I've basically begged my PCP to at least order me a CT scan while I'm waiting for my appointment with the Siteman Center. He said he would be happy to do that for me, but the endocrinologist that pawned me off told him they don't even do that any more for hyperaldosteronism, only AVS. Call me crazy, but I kind of want all the tests and information possible before I would consider surgery. Concern about a little radiation seems ridiculous when you're talking about potential major surgery. My PCP is going to call my new endocrinologist to see if we can get some communications lines open and make use of the time I'll be waiting to order the CT scan if necessary.

So, in addition to the " usual " hyperaldosteronism symptoms, I am a little freaked out because the last several weeks I have noticed the veins in my hands, feet, even arms & legs to a certain extent are " popping out. " Also is joint pain normal with aldo? Particularly in my hips & shoulders.I feel like I'm turning into a hypochondriac. I have never set foot in the hospital a day in my life other than for the birth of my children. This waiting to get answers is killing me. I know it's a chance in a million that I have cancer, but is it crazy that I am totally worried about that?

Well, thanks for potentially taking the time to read my ramblings. It has been very therapeutic to voice my concerns and read all of your experiences. I hope to get to know all of you a bit more throughout my experience.

Regards,

Virginia Wall

April 22, 2012

Need your renin numbers to see if u have primary or secondary also excess. Endo 1 needs to reread the effEft of K on aldo. Low K can suppress aldo and high K kick it up. Any Endo who thinks Conn's is rare has not kept up to date since about 1967. Where did she train. We need to update their Curriculum. Read and then take my evolution of PA ARTICLE to all who have missed you. ESP after the first low K I would consider it medical negligence to not do proper testing. The Spiro dose is not high as in the old days used to go up to 400 or more a day in Conn's. Wash u is excellent and will hAve u back on track soon would think. I would begin to DASH IN AM like your life depended on it. My approach would also be to dash and do Spiro till you are feeling much better and have gotten caught up to all of the things u have Fallen behind in. Assuming u have had renins measured and rhe 24Hr urine had Na and L measured in it I am available for consultation to work with u and team to get u back to health. And will be in Union Mo over memorial day I grad from MU COLUMBIA.May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 22, 2012, at 21:43, Virginia Wall <virgwall@...> wrote:

Greetings Dr. Grim & co!

I thought I would send out a message just to introduce myself, I joined the group just 2 days ago. I have already benefited greatly from all the discussions and am glad I was able to join.

Just a brief description to start about my situation. I am a 31 year old female, and have only within the last 2-3 months been diagnosed with hyperaldosteronism. It's hard for me to speculate exactly when my symptoms started. I have 3 children, and my oldest is 8 1/2 years old. I had "pregnancy induced" hypertension with my first child, I never had to go on medication, and my BP only got in the 150/90s range in the last trimester. This was in 2003. My BP went back to normal shortly after I delivered. In August of 2007, right before I became pregnant with my second child, I remember my BP was 140/90s.at my OB's office. This was the first time in my life my BP was high other than with pregnancy. I remember thinking it must have been a fluke. I struggled with BP all throughout my 2nd pregnancy, I was never put on meds although I got into the 160/90s range for the whole last trimester. My OB never showed much concern, because I had been "running a little high before pregnancy." After I delivered my 2nd child in May 2008 my BP never went back down. I always eat horribly when I'm pregnant, I gained 70 lbs with my 2nd child. So my PCP monitored my BP for a full year, and I lost all my pregnancy weight, and tried to limit my sodium intake. My BP stayed in the 150/90s range for the most part, even after these efforts. My PCP at this point told me I should go on meds. This was the summer of 2009. I was on one medication, I can't remember the name of it, for 2-3 months, with little results. My PCP just kept upping the dosage. About this time, a co-worker discussed how her dermatologist recommended spirinolactone to her because it helped with acne (and obviously my co-worker had high BP). Ironically enough, I had been struggling with acne WAY worse than when I was a teenager for about 4-5 years. I suggested this to my PCP, and he agreed to prescribe me spiro. Really. I couldn't make this stuff up lol. I can't remember the exact dosage I was on at the time....none of this was too important in the good old oblivious days, you know? But from what I've been reading I think I was on a pretty high dose. At least 100 mg a day.....maybe even 200 mg? I can look into it.

In April of 2011 I got pregnant with my 3rd child (Due January 30 2012). This pregnancy was actually a "surprise" for us, we were preventing at the time. So as soon as I could I contacted my PCP and he changed my BP meds to lebatelol, which is considered safe for pregnancy. Although I have been researching the fact that pregnancy hormones help keep aldosterone in check...I don't think this worked very well for me. After I went off the spiro, my BP started climbing right away. I started out on 100 mg lebatelol 2x day, and went to 200 mg 2xday in about July. In August they put me on Nifedical XL 30 mg in addition to the lebatelol. My BP at this time was usually about 160/100s. After about a month on both medications my BP went down slightly and hovered around 150/90s again. In November my BP was up again and they found a slight amount of protein in my urine. They sent me down for a stress test and took some blood samples, and I was to collect my urine for 24 hours with the chance of a preeclampsia diagnosis and complete bed rest. (This was November 10th based on my history with pharmacy). Ironically enough, my blood test showed my K was down to 2.4 . Since I was in the hospital anyway, they gave me an IV of K (man that hurts!!) and sent me home. My 24 hour protein was borderline, Dr. said if it's over 300 he would keep me on bed rest but mine was 298. BP was very hard to control the remainder of my pregnancy, and I had 2 UTI's (no symptoms whatsoever, but blood was in my urine). Potassium was low again on November 28th--2.8, and I was prescribed Potassium 20 Meq 2 tabs 2xday. My OB said my low K was a mystery, and didn't seem too inclined to investigate further. Apparently my problem should have been solved, because we did not test my blood again during my pregnancy.

I delivered my 3rd child 2 weeks & 2 days early, on January 13th of this year. He was born with a genetic blood defect, (called G6PD deficiency for those that are familiar or curious), and he spent the first 11 days in the NICU. I only mention this because I probably would have been more quick to go to the Dr. myself if I wasn't so concerned with my child's welfare. My son had 2 blood transfusions in his first 5 weeks of life. Probably when he was about 3 weeks old i noticed my legs were "aching" all the time. I was also drinking about 2 gallons of water a day. And of course I was completely exhausted. It took me awhile to decide to go to the Dr., becuase I had a newborn! Of course I was going to be tired, and the thirst I believed to be from nursing. But after a couple of weeks I was worried I had diabetes or something. I went to my PCP (who is AMAZING) and he ran all kinds of blood tests. It was discovered my K was at 2.0. He put me on K 20 Meq 1 tab 3x day right away. He also called the lab and asked them to process a test for aldosterone that SAME DAY! (I told you he's amazing! lol). It took about 3-4 days for the lab results to come back though. As soon as the Dr. office called telling me my Potassium was low, I was kind of fed up. I mean, 3x in a few months! I knew this wasn't normal. So I got online and started researching like crazy. The first day I did research I thought my kidneys were failing from my high BP ha ha. But the second day I discovered hyperaldosteronism. Everything fit. And that day I found out that's what my PCP thought I had too.

When my test came back positive for Aldosterone the first week of March (it was in the 70's and "normal" for this lab was 27. I still need to request printouts of all my lab work though) my PCP referred me to an endocrinologist, and I got in the next week. She asked me what brought me in that day and I said "My Dr. and I think I have hyperaldosteronism." She said "Ha ha ha! What makes you think that, hyperaldosteronism is so rare!" I wanted to be like, what do you think lady? All the diagnostic evidence! Sheesh. So for about 4 weeks her "goal" was to "confirm" my hyperaldosteronism diagnosis. She stated that we needed to get my K back up to normal, because aldosterone will always be high if K is low. --Dr. Grim, is this true to your knowledge? Just curious. At this time, I am on K 20Meq 2 tabs, 3x a day (so 6 tabs a day). Even with this amount of K, the closest we came to a "normal" K was 3.1 (and I will add this was with a tourniquet lol). She said this was "close enough" though and re-measured my Aldosterone. It was 95. This endocrinologist felt my condition is a little out of her comfort zone, so at this time I have been referred to the Sitmeman Center for Advanced Medicine in St. Louis Missiouri, which is affiliated with Jewish Hospital (I live in a suburb of St. Louis, only about 20 min away). The earliest the Siteman Center could get me in was May 17th (the appointment was made April 4th).

I know I shouldn't be doing this, but my PCP prescribed me spirinolactone about 5 weeks ago "just in case" and I started taking it about 1 1/2 weeks ago. I'm on 100 mg 1x day. I say I know I shouldn't because I'm sure it will effect my future testing, but I just can't help it! I have had my leg muscles aching for weeks now, and these BP headaches are extreme and I am starting to experience blurred vision and my PCP said he can start to see some damage in my eyes from my high BP. Right now it's running 160s over 100s for the most part, which I know doesn't sound that crazy, but considering it's been a pretty big jump within just a year or two. My PCP ordered a BMP on Friday and my K level was 3.7, but after reading all the feedback on usage of the tourniquet, etc, I doubt this is accurate. I don't think my legs would still be aching with a 3.7, would they? I understand it takes a few weeks for spiro to really make a difference in some cases, doesn't it? Another question for Dr. Grim: Right now all I have is a automated BP cuff I bought about 4 years ago, but for the most part it seems pretty accurate. I have been instructed to take my BP first think in the morning. It seems the first time I take my BP, it is always something like 174/114. Then I re-take it and it's 163/104 (or approximately 10 less on each). Is this a likely phenomenon, or just potentially faulty equipment? Could it be because of how I'm positioned, or becuase I was walking around & just sat down, etc?

I've basically begged my PCP to at least order me a CT scan while I'm waiting for my appointment with the Siteman Center. He said he would be happy to do that for me, but the endocrinologist that pawned me off told him they don't even do that any more for hyperaldosteronism, only AVS. Call me crazy, but I kind of want all the tests and information possible before I would consider surgery. Concern about a little radiation seems ridiculous when you're talking about potential major surgery. My PCP is going to call my new endocrinologist to see if we can get some communications lines open and make use of the time I'll be waiting to order the CT scan if necessary.

So, in addition to the "usual" hyperaldosteronism symptoms, I am a little freaked out because the last several weeks I have noticed the veins in my hands, feet, even arms & legs to a certain extent are "popping out." Also is joint pain normal with aldo? Particularly in my hips & shoulders.I feel like I'm turning into a hypochondriac. I have never set foot in the hospital a day in my life other than for the birth of my children. This waiting to get answers is killing me. I know it's a chance in a million that I have cancer, but is it crazy that I am totally worried about that?

Well, thanks for potentially taking the time to read my ramblings. It has been very therapeutic to voice my concerns and read all of your experiences. I hope to get to know all of you a bit more throughout my experience.

Regards,

Virginia Wall

April 23, 2012

Welcome to the group Virginia, even though this is a group we'd all rather not need to belong to. I'm sure others, far more knowledgable than I am will answer you, but a couple of things popped out at me while reading your introduction.Serum sodium numbers mean very little. That number reflects the amount of hydration you have in your system and is not a reliable number to let you know if you are Dashing correctly. You need a urine test for both K and Na.The muscle weakness and spasms you have experienced are mainly due to low K. Personally I have found that Magnesium plays a part in that also, but that may be just me. Low sodium V-8 is the drink of choice for most of us.Finally, learning to eat a low sodium diet is a learning curve. Once you start reading labels religiously you will

discover that even the most benign sounding foods (think bread for one), are loaded to the gills with Na.Fresh foods are in and canned or preprepared foods are pretty much out. The up side of this is that your BP will come down and both you and your family will benefit from this way of eating. My BP has gone from a high of around 222/114 before diagnosis to 128/68 today, thanks to Spiro, low Na and Dr. Grim.Dianne

Greetings Dr. Grim & co!

I thought I would send out a message just to introduce myself, I joined the group just 2 days ago. I have already benefited greatly from all the discussions and am glad I was able to join.

Just a brief description to start about my situation. I am a 31 year old female, and have only within the last 2-3 months been diagnosed with hyperaldosteronism. It's hard for me to speculate exactly when my symptoms started. I have 3 children, and my oldest is 8 1/2 years old. I had "pregnancy induced" hypertension with my first child, I never had to go on medication, and my BP only got in the 150/90s range in the last trimester. This was in 2003. My BP went back to normal shortly after I delivered. In August of 2007, right before I became pregnant with my second child, I remember my BP was 140/90s.at my OB's office. This was the first time in my life my BP was high other than with pregnancy. I remember thinking it must have been a fluke. I struggled with BP all throughout my 2nd pregnancy, I was never put on meds

although I got into the 160/90s range for the whole last trimester. My OB never showed much concern, because I had been "running a little high before pregnancy." After I delivered my 2nd child in May 2008 my BP never went back down. I always eat horribly when I'm pregnant, I gained 70 lbs with my 2nd child. So my PCP monitored my BP for a full year, and I lost all my pregnancy weight, and tried to limit my sodium intake. My BP stayed in the 150/90s range for the most part, even after these efforts. My PCP at this point told me I should go on meds. This was the summer of 2009. I was on one medication, I can't remember the name of it, for 2-3 months, with little results. My PCP just kept upping the dosage. About this time, a co-worker discussed how her dermatologist recommended spirinolactone to her because it helped with acne (and obviously my co-worker had high BP). Ironically enough, I

had been struggling with acne WAY worse than when I was a teenager for about 4-5 years. I suggested this to my PCP, and he agreed to prescribe me spiro. Really. I couldn't make this stuff up lol. I can't remember the exact dosage I was on at the time....none of this was too important in the good old oblivious days, you know? But from what I've been reading I think I was on a pretty high dose. At least 100 mg a day.....maybe even 200 mg? I can look into it.

In April of 2011 I got pregnant with my 3rd child (Due January 30 2012). This pregnancy was actually a "surprise" for us, we were preventing at the time. So as soon as I could I contacted my PCP and he changed my BP meds to lebatelol, which is considered safe for pregnancy. Although I have been researching the fact that pregnancy hormones help keep aldosterone in check...I don't think this worked very well for me. After I went off the spiro, my BP started climbing right away. I started out on 100 mg lebatelol 2x day, and went to 200 mg 2xday in about July. In August they put me on Nifedical XL 30 mg in addition to the lebatelol. My BP at this time was usually about 160/100s. After about a month on both medications my BP went down slightly and hovered around 150/90s again. In November my BP was up again and they found a slight amount of protein in my urine. They sent me down for a

stress test and took some blood samples, and I was to collect my urine for 24 hours with the chance of a preeclampsia diagnosis and complete bed rest. (This was November 10th based on my history with pharmacy). Ironically enough, my blood test showed my K was down to 2.4 . Since I was in the hospital anyway, they gave me an IV of K (man that hurts!!) and sent me home. My 24 hour protein was borderline, Dr. said if it's over 300 he would keep me on bed rest but mine was 298. BP was very hard to control the remainder of my pregnancy, and I had 2 UTI's (no symptoms whatsoever, but blood was in my urine). Potassium was low again on November 28th--2.8, and I was prescribed Potassium 20 Meq 2 tabs 2xday. My OB said my low K was a mystery, and didn't seem too inclined to investigate further. Apparently my problem should have been solved, because we did not test my blood again during my pregnancy.

I delivered my 3rd child 2 weeks & 2 days early, on January 13th of this year. He was born with a genetic blood defect, (called G6PD deficiency for those that are familiar or curious), and he spent the first 11 days in the NICU. I only mention this because I probably would have been more quick to go to the Dr. myself if I wasn't so concerned with my child's welfare. My son had 2 blood transfusions in his first 5 weeks of life. Probably when he was about 3 weeks old i noticed my legs were "aching" all the time. I was also drinking about 2 gallons of water a day. And of course I was completely exhausted. It took me awhile to decide to go to the Dr., becuase I had a newborn! Of course I was going to be tired, and the thirst I believed to be from nursing. But after a couple of weeks I was worried I had diabetes or something. I went to my PCP (who is AMAZING) and he ran all kinds of blood

tests. It was discovered my K was at 2.0. He put me on K 20 Meq 1 tab 3x day right away. He also called the lab and asked them to process a test for aldosterone that SAME DAY! (I told you he's amazing! lol). It took about 3-4 days for the lab results to come back though. As soon as the Dr. office called telling me my Potassium was low, I was kind of fed up. I mean, 3x in a few months! I knew this wasn't normal. So I got online and started researching like crazy. The first day I did research I thought my kidneys were failing from my high BP ha ha. But the second day I discovered hyperaldosteronism. Everything fit. And that day I found out that's what my PCP thought I had too.

When my test came back positive for Aldosterone the first week of March (it was in the 70's and "normal" for this lab was 27. I still need to request printouts of all my lab work though) my PCP referred me to an endocrinologist, and I got in the next week. She asked me what brought me in that day and I said "My Dr. and I think I have hyperaldosteronism." She said "Ha ha ha! What makes you think that, hyperaldosteronism is so rare!" I wanted to be like, what do you think lady? All the diagnostic evidence! Sheesh. So for about 4 weeks her "goal" was to "confirm" my hyperaldosteronism diagnosis. She stated that we needed to get my K back up to normal, because aldosterone will always be high if K is low. --Dr. Grim, is this true to your knowledge? Just curious. At this time, I am on K 20Meq 2 tabs, 3x a day (so 6 tabs a day). Even with this amount of K, the

closest we came to a "normal" K was 3.1 (and I will add this was with a tourniquet lol). She said this was "close enough" though and re-measured my Aldosterone. It was 95. This endocrinologist felt my condition is a little out of her comfort zone, so at this time I have been referred to the Sitmeman Center for Advanced Medicine in St. Louis Missiouri, which is affiliated with Jewish Hospital (I live in a suburb of St. Louis, only about 20 min away). The earliest the Siteman Center could get me in was May 17th (the appointment was made April 4th).

I know I shouldn't be doing this, but my PCP prescribed me spirinolactone about 5 weeks ago "just in case" and I started taking it about 1 1/2 weeks ago. I'm on 100 mg 1x day. I say I know I shouldn't because I'm sure it will effect my future testing, but I just can't help it! I have had my leg muscles aching for weeks now, and these BP headaches are extreme and I am starting to experience blurred vision and my PCP said he can start to see some damage in my eyes from my high BP. Right now it's running 160s over 100s for the most part, which I know doesn't sound that crazy, but considering it's been a pretty big jump within just a year or two. My PCP ordered a BMP on Friday and my K level was 3.7, but after reading all the feedback on usage of the tourniquet, etc, I doubt this is accurate. I don't think my legs would still be aching with a 3.7, would they? I understand it takes a few weeks for spiro to

really make a difference in some cases, doesn't it? Another question for Dr. Grim: Right now all I have is a automated BP cuff I bought about 4 years ago, but for the most part it seems pretty accurate. I have been instructed to take my BP first think in the morning. It seems the first time I take my BP, it is always something like 174/114. Then I re-take it and it's 163/104 (or approximately 10 less on each). Is this a likely phenomenon, or just potentially faulty equipment? Could it be because of how I'm positioned, or becuase I was walking around & just sat down, etc?

I've basically begged my PCP to at least order me a CT scan while I'm waiting for my appointment with the Siteman Center. He said he would be happy to do that for me, but the endocrinologist that pawned me off told him they don't even do that any more for hyperaldosteronism, only AVS. Call me crazy, but I kind of want all the tests and information possible before I would consider surgery. Concern about a little radiation seems ridiculous when you're talking about potential major surgery. My PCP is going to call my new endocrinologist to see if we can get some communications lines open and make use of the time I'll be waiting to order the CT scan if necessary.

So, in addition to the "usual" hyperaldosteronism symptoms, I am a little freaked out because the last several weeks I have noticed the veins in my hands, feet, even arms & legs to a certain extent are "popping out." Also is joint pain normal with aldo? Particularly in my hips & shoulders.I feel like I'm turning into a hypochondriac. I have never set foot in the hospital a day in my life other than for the birth of my children. This waiting to get answers is killing me. I know it's a chance in a million that I have cancer, but is it crazy that I am totally worried about that?

Well, thanks for potentially taking the time to read my ramblings. It has been very therapeutic to voice my concerns and read all of your experiences. I hope to get to know all of you a bit more throughout my experience.

Regards,

Virginia Wall

April 23, 2012

I do realize she has three small children and the last one had/has an issue that

may need attention. (NIH has a seperate building they call " the Children's

Hospital " ) I watched a bunch of them having an Easter Egg hunt on the back

lawn. I figured with three small children she might like to be as close to the

top of her game as possible and maybe even be feeling good and watch them

graduate!

I have read many studies and have never seen Meds (And DASH) offered 1st line,

especially instead of testing. Even after testing if they lateralize it to one

side they only offer it as an alternative! I can assure you that 3 world renown

endos did not think me starting on spiro was the right approach! (And this was

before testing!)

" If you don't have time to do it right when will you have time to do it over? "

Will it take bumps in a breast and a mammogram to convince you to take a step

back and do it right? And if you happen to have a cortisol issue and you add to

it through the way spironolactone works (remember the CYP11B2/CYP11B1 question),

I understand better how it works now!

I still think it would be worth her time to take the 15 minutes to fill out the

e-mail at:

http://clinicalstudies.info.nih.gov/contact-prpl.html

and see if they have a suggestion!

If I sound irritated, it's the condition, Mayo lists " depression, anxiety,and

irritability " and oh yea, " weight gain and progressive obesity " among the eleven

SXs I can relate to! (Those would add to QOL when raising 3 young children if

she happens to be " masking " something! IMHO. This is something they didn't know

about in 1963!)

The choice is hers, I only make suggestions!

> > > >

> > > > Greetings Dr. Grim & co!

> > > >

> > > > I thought I would send out a message just to introduce myself, I joined

> > > > the group just 2 days ago. I have already benefited greatly from

all

> > > > the discussions and am glad I was able to join.

> > > >

> > > > Just a brief description to start about my situation. I am a 31 year old

> > > > female, and have only within the last 2-3 months been diagnosed with

> > > > hyperaldosteronism. It's hard for me to speculate exactly when my

symptoms

> > > > started. I have 3 children, and my oldest is 8 1/2 years old. I had

> > > > " pregnancy induced " hypertension with my first child, I never had to go

on

> > > > medication, and my BP only got in the 150/90s range in the last

trimester.

> > > > This was in 2003. My BP went back to normal shortly after I delivered.

In

> > > > August of 2007, right before I became pregnant with my second child, I

> > > > remember my BP was 140/90s.at my OB's office. This was the first time in

> > > > my life my BP was high other than with pregnancy. I remember thinking it

> > > > must have been a fluke. I struggled with BP all throughout my 2nd

> > > > pregnancy, I was never put on meds although I got into the 160/90s range

> > > > for the whole last trimester. My OB never showed much concern, because I

> > > > had been " running a little high before pregnancy. " After I delivered my

> > > > 2nd child in May 2008 my BP never went back down. I always eat horribly

> > > > when I'm pregnant, I gained 70 lbs with my 2nd child. So my PCP

monitored

> > > > my BP for a full year, and I lost all my pregnancy weight, and tried to

> > > > limit my sodium intake. My BP stayed in the 150/90s range for the most

> > > > part, even after these efforts. My PCP at this point told me I should go

> > > > on meds. This was the summer of 2009. I was on one medication, I can't

> > > > remember the name of it, for 2-3 months, with little results. My PCP

just

> > > > kept upping the dosage. About this time, a co-worker discussed how her

> > > > dermatologist recommended spirinolactone to her because it helped with

acne

> > > > (and obviously my co-worker had high BP). Ironically enough, I had been

> > > > struggling with acne WAY worse than when I was a teenager for about 4-5

> > > > years. I suggested this to my PCP, and he agreed to prescribe me spiro.

> > > > Really. I couldn't make this stuff up lol. I can't remember the exact

> > > > dosage I was on at the time....none of this was too important in the

good

> > > > old oblivious days, you know? But from what I've been reading I think I

> > > > was on a pretty high dose. At least 100 mg a day.....maybe even 200 mg?

I

> > > > can look into it.

> > > >

> > > > In April of 2011 I got pregnant with my 3rd child (Due January 30 2012).

> > > > This pregnancy was actually a " surprise " for us, we were preventing at

the

> > > > time. So as soon as I could I contacted my PCP and he changed my BP meds

> > > > to lebatelol, which is considered safe for pregnancy. Although I have

been

> > > > researching the fact that pregnancy hormones help keep aldosterone in

> > > > check...I don't think this worked very well for me. After I went off the

> > > > spiro, my BP started climbing right away. I started out on 100 mg

> > > > lebatelol 2x day, and went to 200 mg 2xday in about July. In August they

> > > > put me on Nifedical XL 30 mg in addition to the lebatelol. My BP at this

> > > > time was usually about 160/100s. After about a month on both medications

> > > > my BP went down slightly and hovered around 150/90s again. In November

my

> > > > BP was up again and they found a slight amount of protein in my urine.

> > > > They sent me down for a stress test and took some blood samples, and I

was

> > > > to collect my urine for 24 hours with the chance of a preeclampsia

> > > > diagnosis and complete bed rest. (This was November 10th based on my

> > > > history with pharmacy). Ironically enough, my blood test showed my K was

> > > > down to 2.4 . Since I was in the hospital anyway, they gave me an IV of

K

> > > > (man that hurts!!) and sent me home. My 24 hour protein was borderline,

> > > > Dr. said if it's over 300 he would keep me on bed rest but mine was 298.

> > > > BP was very hard to control the remainder of my pregnancy, and I had 2

> > > > UTI's (no symptoms whatsoever, but blood was in my urine). Potassium was

> > > > low again on November 28th--2.8, and I was prescribed Potassium 20 Meq 2

> > > > tabs 2xday. My OB said my low K was a mystery, and didn't seem too

> > > > inclined to investigate further. Apparently my problem should have been

> > > > solved, because we did not test my blood again during my pregnancy.

> > > >

> > > > I delivered my 3rd child 2 weeks & 2 days early, on January 13th of this

> > > > year. He was born with a genetic blood defect, (called G6PD deficiency

for

> > > > those that are familiar or curious), and he spent the first 11 days in

the

> > > > NICU. I only mention this because I probably would have been more quick

to

> > > > go to the Dr. myself if I wasn't so concerned with my child's welfare.

My

> > > > son had 2 blood transfusions in his first 5 weeks of life. Probably when

> > > > he was about 3 weeks old i noticed my legs were " aching " all the time. I

> > > > was also drinking about 2 gallons of water a day. And of course I was

> > > > completely exhausted. It took me awhile to decide to go to the Dr.,

> > > > becuase I had a newborn! Of course I was going to be tired, and the

thirst

> > > > I believed to be from nursing. But after a couple of weeks I was worried

I

> > > > had diabetes or something. I went to my PCP (who is AMAZING) and he ran

> > > > all kinds of blood tests. It was discovered my K was at 2.0. He put me

on

> > > > K 20 Meq 1 tab 3x day right away. He also called the lab and asked them

to

> > > > process a test for aldosterone that SAME DAY! (I told you he's amazing!

> > > > lol). It took about 3-4 days for the lab results to come back though. As

> > > > soon as the Dr. office called telling me my Potassium was low, I was

kind

> > > > of fed up. I mean, 3x in a few months! I knew this wasn't normal. So I

> > > > got online and started researching like crazy. The first day I did

> > > > research I thought my kidneys were failing from my high BP ha ha. But

the

> > > > second day I discovered hyperaldosteronism. Everything fit. And that day

>

April 23, 2012

At NIH the Endo sat down with the ct-scan (with contrast) on the computer and

measured and pointed out aspects that showed it was benign. We did not discuss

follow on but since mine will be in a jar they can check it daily! Do you know

that you have adenomas?

> >>

> >>>

> >>> Greetings Dr. Grim & co!

> >>>

> >>> I thought I would send out a message just to introduce myself, I joined

the group just 2 days ago. I have already benefited greatly from all the

discussions and am glad I was able to join.

> >>>

> >>> Just a brief description to start about my situation. I am a 31 year old

female, and have only within the last 2-3 months been diagnosed with

hyperaldosteronism. It's hard for me to speculate exactly when my symptoms

started. I have 3 children, and my oldest is 8 1/2 years old. I had " pregnancy

induced " hypertension with my first child, I never had to go on medication, and

my BP only got in the 150/90s range in the last trimester. This was in 2003.

My BP went back to normal shortly after I delivered. In August of 2007, right

before I became pregnant with my second child, I remember my BP was 140/90s.at

my OB's office. This was the first time in my life my BP was high other than

with pregnancy. I remember thinking it must have been a fluke. I struggled

with BP all throughout my 2nd pregnancy, I was never put on meds although I got

into the 160/90s range for the whole last trimester. My OB never showed much

concern, because I had been " running a little high before pregnancy. " After I

delivered my 2nd child in May 2008 my BP never went back down. I always eat

horribly when I'm pregnant, I gained 70 lbs with my 2nd child. So my PCP

monitored my BP for a full year, and I lost all my pregnancy weight, and tried

to limit my sodium intake. My BP stayed in the 150/90s range for the most part,

even after these efforts. My PCP at this point told me I should go on meds.

This was the summer of 2009. I was on one medication, I can't remember the name

of it, for 2-3 months, with little results. My PCP just kept upping the dosage.

About this time, a co-worker discussed how her dermatologist recommended

spirinolactone to her because it helped with acne (and obviously my co-worker

had high BP). Ironically enough, I had been struggling with acne WAY worse than

when I was a teenager for about 4-5 years. I suggested this to my PCP, and he

agreed to prescribe me spiro. Really. I couldn't make this stuff up lol. I

can't remember the exact dosage I was on at the time....none of this was too

important in the good old oblivious days, you know? But from what I've been

reading I think I was on a pretty high dose. At least 100 mg a day.....maybe

even 200 mg? I can look into it.

> >>>

> >>> In April of 2011 I got pregnant with my 3rd child (Due January 30 2012).

This pregnancy was actually a " surprise " for us, we were preventing at the time.

So as soon as I could I contacted my PCP and he changed my BP meds to lebatelol,

which is considered safe for pregnancy. Although I have been researching the

fact that pregnancy hormones help keep aldosterone in check...I don't think this

worked very well for me. After I went off the spiro, my BP started climbing

right away. I started out on 100 mg lebatelol 2x day, and went to 200 mg 2xday

in about July. In August they put me on Nifedical XL 30 mg in addition to the

lebatelol. My BP at this time was usually about 160/100s. After about a month

on both medications my BP went down slightly and hovered around 150/90s again.

In November my BP was up again and they found a slight amount of protein in my

urine. They sent me down for a stress test and took some blood samples, and I

was to collect my urine for 24 hours with the chance of a preeclampsia diagnosis

and complete bed rest. (This was November 10th based on my history with

pharmacy). Ironically enough, my blood test showed my K was down to 2.4 .

Since I was in the hospital anyway, they gave me an IV of K (man that hurts!!)

and sent me home. My 24 hour protein was borderline, Dr. said if it's over 300

he would keep me on bed rest but mine was 298. BP was very hard to control the

remainder of my pregnancy, and I had 2 UTI's (no symptoms whatsoever, but blood

was in my urine). Potassium was low again on November 28th--2.8, and I was

prescribed Potassium 20 Meq 2 tabs 2xday. My OB said my low K was a mystery,

and didn't seem too inclined to investigate further. Apparently my problem

should have been solved, because we did not test my blood again during my

pregnancy.

> >>>

> >>> I delivered my 3rd child 2 weeks & 2 days early, on January 13th of this

year. He was born with a genetic blood defect, (called G6PD deficiency for

those that are familiar or curious), and he spent the first 11 days in the NICU.

I only mention this because I probably would have been more quick to go to the

Dr. myself if I wasn't so concerned with my child's welfare. My son had 2 blood

transfusions in his first 5 weeks of life. Probably when he was about 3 weeks

old i noticed my legs were " aching " all the time. I was also drinking about 2

gallons of water a day. And of course I was completely exhausted. It took me

awhile to decide to go to the Dr., becuase I had a newborn! Of course I was

going to be tired, and the thirst I believed to be from nursing. But after a

couple of weeks I was worried I had diabetes or something. I went to my PCP

(who is AMAZING) and he ran all kinds of blood tests. It was discovered my K

was at 2.0. He put me on K 20 Meq 1 tab 3x day right away. He also called the

lab and asked them to process a test for aldosterone that SAME DAY! (I told you

he's amazing! lol). It took about 3-4 days for the lab results to come back

though. As soon as the Dr. office called telling me my Potassium was low, I was

kind of fed up. I mean, 3x in a few months! I knew this wasn't normal. So I

got online and started researching like crazy. The first day I did research I

thought my kidneys were failing from my high BP ha ha. But the second day I

discovered hyperaldosteronism. Everything fit. And that day I found out that's

what my PCP thought I had too.

> >>>

> >>> When my test came back positive for Aldosterone the first week of March

(it was in the 70's and " normal " for this lab was 27. I still need to request

printouts of all my lab work though) my PCP referred me to an endocrinologist,

and I got in the next week. She asked me what brought me in that day and I said

" My Dr. and I think I have hyperaldosteronism. " She said " Ha ha ha! What makes

you think that, hyperaldosteronism is so rare! " I wanted to be like, what do

you think lady? All the diagnostic evidence! Sheesh. So for about 4 weeks her

" goal " was to " confirm " my hyperaldosteronism diagnosis. She stated that we

needed to get my K back up to normal, because aldosterone will always be high if

K is low. --Dr. Grim, is this true to your knowledge? Just curious. At this

time, I am on K 20Meq 2 tabs, 3x a day (so 6 tabs a day). Even with this amount

of K, the closest we came to a " normal " K was 3.1 (and I will add this was with

a tourniquet lol). She said this was " close enough " though and re-measured my

Aldosterone. It was 95. This endocrinologist felt my condition is a little out

of her comfort zone, so at this time I have been referred to the Sitmeman Center

for Advanced Medicine in St. Louis Missiouri, which is affiliated with

Jewish Hospital (I live in a suburb of St. Louis, only about 20 min away). The

earliest the Siteman Center could get me in was May 17th (the appointment was

made April 4th).

> >>>

> >>> I know I shouldn't be doing this, but my PCP prescribed me spirinolactone

about 5 weeks ago " just in case " and I started taking it about 1 1/2 weeks ago.

I'm on 100 mg 1x day. I say I know I shouldn't because I'm sure it will effect

my future testing, but I just can't help it! I have had my leg muscles aching

for weeks now, and these BP headaches are extreme and I am starting to

experience blurred vision and my PCP said he can start to see some damage in my

eyes from my high BP. Right now it's running 160s over 100s for the most part,

which I know doesn't sound that crazy, but considering it's been a pretty big

jump within just a year or two. My PCP ordered a BMP on Friday and my K level

was 3.7, but after reading all the feedback on usage of the tourniquet, etc, I

doubt this is accurate. I don't think my legs would still be aching with a 3.7,

would they? I understand it takes a few weeks for spiro to really make a

difference in some cases, doesn't it? Another question for Dr. Grim: Right now

all I have is a automated BP cuff I bought about 4 years ago, but for the most

part it seems pretty accurate. I have been instructed to take my BP first think

in the morning. It seems the first time I take my BP, it is always something

like 174/114. Then I re-take it and it's 163/104 (or approximately 10 less on

each). Is this a likely phenomenon, or just potentially faulty equipment?

Could it be because of how I'm positioned, or becuase I was walking around &

just sat down, etc?

> >>>

> >>> I've basically begged my PCP to at least order me a CT scan while I'm

waiting for my appointment with the Siteman Center. He said he would be happy

to do that for me, but the endocrinologist that pawned me off told him they

don't even do that any more for hyperaldosteronism, only AVS. Call me crazy,

but I kind of want all the tests and information possible before I would

consider surgery. Concern about a little radiation seems ridiculous when you're

talking about potential major surgery. My PCP is going to call my new

endocrinologist to see if we can get some communications lines open and make use

of the time I'll be waiting to order the CT scan if necessary.

> >>>

> >>> So, in addition to the " usual " hyperaldosteronism symptoms, I am a little

freaked out because the last several weeks I have noticed the veins in my hands,

feet, even arms & legs to a certain extent are " popping out. " Also is joint

pain normal with aldo? Particularly in my hips & shoulders.I feel like I'm

turning into a hypochondriac. I have never set foot in the hospital a day in my

life other than for the birth of my children. This waiting to get answers is

killing me. I know it's a chance in a million that I have cancer, but is it

crazy that I am totally worried about that?

> >>>

> >>> Well, thanks for potentially taking the time to read my ramblings. It has

been very therapeutic to voice my concerns and read all of your experiences. I

hope to get to know all of you a bit more throughout my experience.

> >>>

> >>> Regards,

> >>>

> >>> Virginia Wall

> >>

> >

>

April 23, 2012

I have found that it is really not all that difficult to cut the salt down. For example to eat a burger, I have always used a thin burger as I am a meat eater, but not a big one and ive always preferred the thinner slice burger.It's seasoned with garlic powder and pepper. There's not much salt in the patty. The the bun I look for the lowest salt content one, which is relative as they are near the same, but not outrageuos, and I love veggies so those go on top. But a good size burger only gets me 200ish and fries another 100ish sodium and that's ony 300-400 for a meal. Still plenty of room to roam. Then chicken and broccoli for dinner - cooked low salt way and with a little cheese and I count about 300 sodium (I eat chicken and broccolli alot). So I am doing good under 1400 still. Lunch varies - I like a low salt beans in a burrito cause it's high in

K and Mg. But that's it. If I stay away from packaged things I do good.

I just found it easy - easier when I figured it out as nutrition is not my specialty. But we can do it! I believe in us!

Greetings Dr. Grim & co!

I thought I would send out a message just to introduce myself, I joined the group just 2 days ago. I have already benefited greatly from all the discussions and am glad I was able to join.

Just a brief description to start about my situation. I am a 31 year old female, and have only within the last 2-3 months been diagnosed with hyperaldosteronism. It's hard for me to speculate exactly when my symptoms started. I have 3 children, and my oldest is 8 1/2 years old. I had "pregnancy induced" hypertension with my first child, I never had to go on medication, and my BP only got in the 150/90s range in the last trimester. This was in 2003. My BP went back to normal shortly after I delivered. In August of 2007, right before I became pregnant with my second child, I remember my BP was 140/90s.at my OB's office. This was the first time in my life my BP was high other than with pregnancy. I remember thinking it must have been a fluke. I struggled with BP all throughout my 2nd pregnancy, I was never put on meds although I

got into the 160/90s range for the whole last trimester. My OB never showed much concern, because I had been "running a little high before pregnancy." After I delivered my 2nd child in May 2008 my BP never went back down. I always eat horribly when I'm pregnant, I gained 70 lbs with my 2nd child. So my PCP monitored my BP for a full year, and I lost all my pregnancy weight, and tried to limit my sodium intake. My BP stayed in the 150/90s range for the most part, even after these efforts. My PCP at this point told me I should go on meds. This was the summer of 2009. I was on one medication, I can't remember the name of it, for 2-3 months, with little results. My PCP just kept upping the dosage. About this time, a co-worker discussed how her dermatologist recommended spirinolactone to her because it helped with acne (and obviously my co-worker had high BP). Ironically enough, I had been

struggling with acne WAY worse than when I was a teenager for about 4-5 years. I suggested this to my PCP, and he agreed to prescribe me spiro. Really. I couldn't make this stuff up lol. I can't remember the exact dosage I was on at the time....none of this was too important in the good old oblivious days, you know? But from what I've been reading I think I was on a pretty high dose. At least 100 mg a day.....maybe even 200 mg? I can look into it.