introducing myself

June 25, 2010

Does anyone have any suggestions for my 18 month old to get vitamin D he will not drink milk and its so hot where we live he rarely gets out in the sun? Thanks Heidi

From: Sheri Nakken <vaccinedangers@...>Vaccinations Sent: Thu, June 24, 2010 6:52:28 PMSubject: Re: Introducing myself

Yes, most out there with whooping cough have been vaccinated sometimes not diagnosed because doctor thinks they couldn't have whooping cough because vaccinated so call it something else.With homeopathy treatment can help immensely.But need to find the ONE specific remedy that matches the person's individual symptom picture - if more than one in a family with whooping cough have to go on the individual picture for each person - each may need a different remedy. And then as you progress may need to change remedies.Also Vitamin C and Vitamin D3Sheri

Sent via BlackBerry from T-MobileFrom: kelly walker <walkerklj (DOT) com> Sender: Vaccinations Date: Wed, 23 Jun 2010 09:50:49 -0700 (PDT)<Vaccinations>ReplyVaccinations Subject: Re: Introducing myself Thank you for introducing yourself and also for your post on the measles. I can not remember if I had the measles or not. I was born in 1970.I have two children 1yr and 2 yr never been vaccinated both of them just caught the chicken pox form our friends little girl who has been vaccinated for the chicken pox.My cousin who has 5 children all have whooping cough and they too have been vaccinated for whooping cough???? I could go on and on LOL. Again thank you for your posts. I am looking forward to reading

the books you recommended. Sincerely

Sheri Nakken, R.N., MA, Hahnemannian Homeopath Vaccination Information & Choice Network, Washington State, USAVaccines - http://vaccinationdangers.wordpress.com/ Homeopathy http://homeopathycu res.wordpress. comVaccine Dangers, Childhood Disease Classes & Homeopathy Online/email courses - next classes start September 2010

June 29, 2010

Dr. Tenpenny and Dr. Eisenstein recommend about 2000 IUs a day almost from birth unless breastfed because then the mother can take it. Dr. Mercola recommends 15 - 30 minutes of midday sunshine a day.

From: Heidi Good <hargync@...>Subject: Re: Introducing myselfVaccinations Date: Friday, June 25, 2010, 5:24 AM

Does anyone have any suggestions for my 18 month old to get vitamin D he will not drink milk and its so hot where we live he rarely gets out in the sun? Thanks Heidi

From: Sheri Nakken <vaccinedangers@ gmail.com>VaccinationsSent: Thu, June 24, 2010 6:52:28 PMSubject: Re: Introducing myself

Yes, most out there with whooping cough have been vaccinated sometimes not diagnosed because doctor thinks they couldn't have whooping cough because vaccinated so call it something else.With homeopathy treatment can help immensely.But need to find the ONE specific remedy that matches the person's individual symptom picture - if more than one in a family with whooping cough have to go on the individual picture for each person - each may need a different remedy. And then as you progress may need to change remedies.Also Vitamin C and Vitamin D3Sheri

Sent via BlackBerry from T-MobileFrom: kelly walker <walkerklj (DOT) com> Sender: Vaccinations Date: Wed, 23 Jun 2010 09:50:49 -0700 (PDT)<Vaccinations>ReplyVaccinations Subject: Re: Introducing myself Thank you for introducing yourself and also for your post on the measles. I can not remember if I had the measles or not. I was born in 1970.I have two children 1yr and 2 yr never been vaccinated both of them just caught the chicken pox form our friends little girl who has been vaccinated for the chicken pox.My cousin who has 5 children all have whooping cough and they too have been vaccinated for whooping cough???? I could go on and on LOL. Again thank you for your posts. I am looking forward to reading

the books you recommended. Sincerely

Sheri Nakken, R.N., MA, Hahnemannian Homeopath Vaccination Information & Choice Network, Washington State, USAVaccines - http://vaccinationd angers.wordpress .com/ Homeopathy http://homeopathycu res.wordpress. comVaccine Dangers, Childhood Disease Classes & Homeopathy Online/email courses - next classes start September 2010

January 30, 2012

Hi everybodyI was a member of the TPA group a few years back - not particularly active on the forum. Have re-joined today.I was diagnosed with under active thyroid in 2005 by Dr S. Usual story of the GPs practice looking at the blood test results which were still within range. I had/have positive TPO antibodies and my TSH was creeping up over the months - and got to around 3.5 with lots of symptoms of hypothyroidism.

I tried thyroxine but switched to Armour in 2006 which I bought online. Now on Naturethroid which I buy online.My TSH has been creeping down over the years! Very suppressed.

I am currently also taking some thyroxine, in conjunction with a lower dose of Naturethroid. The thyroxine is prescribed by an endocrinologist who I will be seeing again in a few weeks.

The endocrinologist noted that I have 'autoimmune thyroiditis'.I have been relatively active over the years since taking meds, particularly Armour and Naturethroid. But a bit up and down and only manage to work part time.

I have taken adrenal supplements and recently restarted the Nutri. Have also eliminated gluten from my diet as much as possible for the last few months.Have always been susceptible to low ferritin. I think it was about 11 or 12 when I saw Dr S in 2005. Got it up to around 40 at some point then forgot about it.

Endocrinologist mentioned it was very low at 8 last year. (D'Oh)Having it tested again at the moment. When I feel moderately well, I tend to forget to take supplements or think I can manage without them. Although I've obviously kept taking the thyroid replacement.

I would like to get onto a more stable level health wise. I think I may need to take on board the need for additional supplements or have some additional tests and your forum seems a good place for advice.

I think I'll have a few questions this week, (and before I have an appointment with my GP next Monday.)Thank you allLynne (I live in Cardiff)

April 23, 2012

Dr. Grim thanks for responding to my e-mail. I know Endo #1 tested my renin and based on that diagnosed me with primary aldosteronism. I called the office first thing this morning and requested all my lab results, and they are mailing them to me, so hopefully I will have specific #'s soon. I KNEW she was wrong about the " low potassium, high aldosterone " thing!! Ugh, 5-6 weeks WASTED with trying to " confirm " the diagnosis by increasing my K.

I just looked it up, and here is where she attended Med School: Lady Hardinge Medical College, University Of Delhi, NEW DELHI, India. Graduated: 1989. So obviously not a school in the US, maybe they aren't as studied on hyperaldosteronism in India.

My PCP now has the option of going online for your medical history. I took adavantage of that this morning, and discovered I had low potassium on a routine BMP in May of 2009! (My PCP was doing lots of tests before putting me on BP meds). It was 2.9. I don't remember being told this or it being addressed. It was re-taken 3 weeks later, and was 3.3. Crazy what you discover having access to your records. I can tell my PCP was concerned about my having issues with G6PD with it running in my family, I had CBC's done several times and my G6PD level was even tested once, but these tests were always normal, my hemoglobin running about 13. Very interesting.

My most recent BMP as I already stated my K was 3.7 ( " allegedly " ) and my my sodium was 141 (normal was 135-146). I have been studying like crazy the DASH diet and trying to learn all I can about it. I will buy the book ASAP. I think from my initial research though, that I'm already following it to the best of my ability and limited understanding. I will continue to try to improve. But since I was diagnosed with high BP I have tried to limit my sodium as much as possible (since 2009). Especially since my BP was rising & rising in pregnancy I limit all I can. The first time I had low K in the hospital and had an IV my OB instructed me to go on a high K diet. I have continued to do this, eating baked potatoes with skin on several times a week, drinking lots of OJ, eating lots of grapes, bananas, looking at labels and eating as much as I can with K in it. Opting for things like yogurt that has K instead of breakfast cereal without it. With all these efforts & 6 tabs of K 20Meq a day it is still low. I definitely need to do even better on avoiding sodium I'm sure, considering ALL processed foods have TONS of sodium, I am going to try the 2 week DASH diet as soon as I can get organized and purchase the food. I am wondering though since my sodium was " normal " on 4/20/12 does this mean I am doing ok at avoiding sodium? Is your sodium level usually higher with hyperaldosteronism, and considering how low my K has been, should my sodium be equally as high? I am also full-on trying to lose my pregancy weight, I have been a member of Weight Watchers for 8 years, and I started going back to meetings about 5 weeks ago. I have lost 40 of the 60 lbs I gained this last pregnacy so far. I probably should lose another 10 after I get to my pre-pregnancy weight. I'm on it!! :-)

I definitely have a question about exercise, I have been trying to increase my activity and even going on 1-2 mile walks, I seem to pay for it. My legs go from aching to " throbbing. " Is it a bad idea to try and exercise when your K is low? Should I just " power through " this, considering once my muscle tone gets better that will help, or should I try and be realistic with my excercising until I get K regulated?

That is good to know you would recommend me to go on spiro anyway. Will that effect AVS testing though? I imagine it will be a " process " to get that scheduled anyway.

I am so grateful you are willing to consult on my case but I have a feeling we could not afford it. Our finances are extremely tight considering I was forced into retirement with the birth of our 3rd child. It turns out to be a good thing we planned on my staying at home, with everything that is going on with me & my son's health!! If I cannot afford to hire you to consult, is it still ok to e-mail you?

That is awesome you went to Mizzou. It sounds like you're familiar with Missouri & St. Louis. I am grateful to have WASHU and so many amazing medical professionals so close by. I think it is a good thing endo #1 referred me considering she does not seem to have her act together with hyperaldosteronism.

Thanks Dr. Grim for all your advice so far. I am grateful I was diagnosed so " quickly " compared to so many, but just weeks dealing with this seem like years. I am anxious to do all I can to improve my health!

Sincerely,

Virginia Wall

On Mon, Apr 23, 2012 at 12:24 AM, Clarence Grim <lowerbp2@...> wrote:

Need your renin numbers to see if u have primary or secondary also excess. Endo 1 needs to reread the eff

Eft 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 24

Hr 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, MD

Specializing in Difficult

Hypertension

On 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

Virginia, DO NOT START SPIRONOLACTONE IF YOU ARE CONSIDERING AVS! You must be

off it and all MCBs for 6 weeks for the test to be valid.

Please go to this site and review, especially starting at section 5:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057029/pdf/IJHT2011-624691.pdf

The author, Dr. Moraitis, is my (and MAGGIEKAT's) Attending Physician at NIH and

details the process very well. (My AVS was 2 weeks ago NIH.) I am still

catching up from being gone for 2 weeks so I have just " skimmed " your stories

but will try to read the detail in the next day or two. I will probably suggest

you contact NIH and see if they can give you some guidance. You can get a

headstart by going to study 00-CH-O160 at:

http://clinicalstudies.info.nih.gov/detail/A_2000-CH-0160.html

They may also have suggestions for your " little one " .

> >

> > 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

Hello , nice to meet you. I've been reading about your experience and about the NIH and it definitely sounds fascinating.About the spiro....I was afraid of that. Really, it's just common sense, but I'm pretty desperate to feel better so I was kind of taking a " screw it, I'm taking the spiro " attitude. I think there's like a 90% chance I will need AVS or it will at least be considered. My PCP is actually trying to contact my #2 endo to ask that question, so I will discuss with him about stopping the spiro ASAP.

Will NIH consult with me & Dr's? Do you need to actually be a patient at their facility or a potential patient for them to discuss your case?

Thanks for taking the time to take a look at my situation. I appreciate it.-VIRGINIA-On Mon, Apr 23, 2012 at 4:16 PM, <jclark24p@...> wrote:

Virginia, DO NOT START SPIRONOLACTONE IF YOU ARE CONSIDERING AVS! You must be off it and all MCBs for 6 weeks for the test to be valid.

Please go to this site and review, especially starting at section 5:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057029/pdf/IJHT2011-624691.pdf

The author, Dr. Moraitis, is my (and MAGGIEKAT's) Attending Physician at NIH and details the process very well. (My AVS was 2 weeks ago NIH.) I am still catching up from being gone for 2 weeks so I have just " skimmed " your stories but will try to read the detail in the next day or two. I will probably suggest you contact NIH and see if they can give you some guidance. You can get a headstart by going to study 00-CH-O160 at: