Re: Virginia's Hyperaldosteronism

[Guest guest]

The very low K is related to diet salt intake and how much Aldo you are making. Be sure u have the urine Na and K numbers correct. Most will have more Na than K in urine unless u are dashing to the max. So double check. I think you sent the units as mM/L. So need to multiply by UV to get ant excreted. Most newborns can handle high K in milk so would b sure being tested for othe causes of high K in kids. They prob have. MOST CAS are identified before surgery due to larger size greater than 3 cm or calcium in mass. Nocturia polyuria is due to low K causing renal tubule resistance to ADH. GETS better when K gets better. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 23, 2012, at 21:20, Virginia Wall <virgwall@...> wrote:

Dr. Grim: Recall that she has 3 small kids and needs to get back ASAP. AVS can be done later if indicated. But I have only been doing this since 1963. So it is her choice on his soon she wants to get better and caught up. Then the fine details can be worked out I would think.

Serum sodium is high only is Grim stage 4 PA IE ADVANCED cases.

I think you're in line with what my PCP was thinking. He doesn't like my BP being this high for this long (obviously many others in the group have much higher BP's than I do, but my PCP has been my Dr. since I was a baby and hasn't liked my BP progression in the last 4-5 years). He just wants to get me under control and quit screwing around. I will discuss with him this week before I make any decisions about the spiro, especially considering it's going to be another 4 weeks before I even have an initial discussion with my new endocrinologist.

I have read your "evolution of PA" paper a couple of times but I'm still trying to understand everything. I was worried I might be at stage 4 already becuase my K has been so low, especially with trying so hard to have a high K diet & the ridiculous amount of supplements I've been taking. But maybe not? I know my BP doesn't even seem that bad compared to everyone else I've been reading about.

Dr. Grim: You might remind your Indian Dr that I saw the first ever reported Indian with PA WHEN I was Dr. Conn's Fellow in 1969. He can with a letter of introduction from Indira Ghandi. He was so week he was in a wheel chair. Stayed till surgery done and walked out without the WC. IF SHE Searches JW Conn and PA Pt in Indian lit she will see it. Published in 1972 or so. She must have missed class on PA day. But we will get her up to speed. My one on one consulting fee is only $500 for a year. Can be paid in $100/month till done. Most are back on their feet in 3 months. Wish u had found us earlier.

I think I would be a fool to not consider having you consult on my case. Let me work out the logistics and also get my PCP on board. I discussed with my husband though and our initial impression is we would like to work it out.

I don't think I will be seeing endo #1 again now that I have been referred to endo #2...but my PCP still works with her regularly. I'll pass along your article and leave it up to him to update her maybe?

Dr. Grim: If possible you might be able to get there quickly. Contact them now to see. Then you have the answers in about 10 days in DC.

Referring to NIH? They are located in D.C.? 10 days....and travel....right now that seems like such a big committment. But the thought of having sooner treatment is very tempting too. I wonder if I should see how my initial visit with WASHU Dr.'s go and if things seem to be moving in the right direction?

Dr. Grim: If u are nursing would not do the Spiro. The urine numbers we need the 24 hr volume but first glance you are DASHING very well. As mor K in urine than Na. But need the urine volume on that sample.

How many times a night do u get up to pee?

Unfortunately I had to stop nursing anyway because the excess K would have probably killed my son by now (his levels were at 7.8 and I stopped nursing immediately). Right now my son's Dr.'s (PCP & Hematologist) are not considering letting me nurse on spiro, we will see if his formula continues to cause him to need blood transfusions (due to his G6PD the soy might be contraindicative for him--no commercial formulas in the US made without some form of soy) they might consider letting me nurse again if I am only on spiro. Dianne had mentioned maybe contacting LeLeche League for breastmilk, but unfortunately for my son he cannot have certain substances that would normally be OK for breastmilk, like aspirin or fava beans, if the donor had consumed these it would be lethal for my son. I've considered trying to do a "1-on-1" breastmilk donation where I work directly with the donor mother, but with everything going on these things are difficult to arrange.

Hopefully the 24 hour urine test will be in the lab work I asked endo #1 to mail to me and I should get it in a few days. I didn't see a volume on the urine sample I had mentioned, with my levels at 74.4 for K and 37 for Na......I might just not know what I'm looking for. I will submit the 24 hour results as soon as I get them though.

When I first went to the Dr. about 8 weeks ago I was easily peeing 4-5 times a night, and as I had mentioned previously, drinking about 2 gallons. I am now drinking only about 1 gallon a day, and usually I get up once a night to pee. Sometimes 2x. Just out of curiousity, why does that matter? I'm assuming increasing my K has helped with the "extreme thirst" symptoms?

Dr. Grim: Chance is not zero but very low and am not aware of bilateral Ca causing Conn's. But may be a report somewhere. Put that at the bottom of your worry list.

That's good to know. Do they usually diagnose ademas being malignant after they are removed?

Thanks Dr. Grim for all of the feedback.

-VIRGINIA-

[Guest guest]

Dr Grim, another question from your latest response.  Wouldn't it be typical for your Na to be low in your urine, if aldo is forcing your body to hold on to it?  As much as I would like to give myself false props for DASHing like an expert before I was even familiar with it, I'm sure this is not the case.  I have " tried " to read more labels and " avoid " things I know are high in Na, and eat out less.  But I'm sure I have VAST room for improvement.  I love Mexican & Chinese food and my attempt to avoid these sodium death trap cuisines has been half-hearted at best.  I will follow up with more test results as they become available to me.  And I am committing to taking the sodium seriously! 

On Tue, Apr 24, 2012 at 9:15 AM, Clarence Grim <lowerbp2@...> wrote:

 

The very low K is related to diet salt intake and how much Aldo you are making. Be sure u have the urine Na and K numbers correct. Most will have more Na than K in urine unless u are dashing to the max. So double check. I think you sent the units as mM/L. So need to multiply by UV to get ant excreted. Most newborns  can handle high K in milk so would  b sure being tested for othe causes of high K in kids. They prob have. 

MOST CAS are identified before surgery due to larger size greater than 3 cm or calcium in mass.  

Nocturia polyuria is due to low K causing renal tubule resistance to ADH. GETS better when K gets better. 

May your pressure be low!

CE Grim MS, MD

Specializing in Difficult

Hypertension

On Apr 23, 2012, at 21:20, Virginia Wall <virgwall@...> wrote:

 

Dr. Grim: Recall that she has 3 small kids and needs to get back ASAP. AVS can be done later if indicated.  But I have only been doing this since 1963. So it is her choice on his soon she wants to get better and caught up. Then the fine details can be worked out I would think.

Serum sodium is high only is Grim stage 4 PA IE ADVANCED cases.

I think you're in line with what my PCP was thinking.  He doesn't like my BP being this high for this long (obviously many others in the group have much higher BP's than I do, but my PCP has been my Dr. since I was a baby and hasn't liked my BP progression in the last 4-5 years).  He just wants to get me under control and quit screwing around.  I will discuss with him this week before I make any decisions about the spiro, especially considering it's going to be another 4 weeks before I even have an initial discussion with my new endocrinologist.

 

I have read your " evolution of PA " paper a couple of times but I'm still trying to understand everything. I was worried I might be at stage 4 already becuase my K has been so low, especially with trying so hard to have a high K diet & the ridiculous amount of supplements I've been taking.  But maybe not?  I know my BP doesn't even seem that bad compared to everyone else I've been reading about.

 

Dr. Grim: You might remind your Indian Dr that I saw the first ever reported Indian with PA WHEN I was Dr. Conn's Fellow in 1969. He can with a letter of introduction from Indira Ghandi. He was so week he was in a wheel chair. Stayed till surgery done and walked out without the WC. IF SHE Searches JW Conn and PA Pt in Indian lit she will see it. Published in 1972 or so.  She must have missed class on PA day. But we will get her up to speed. My one on one consulting fee is only $500 for a year. Can be paid in $100/month till done. Most are back on their feet in 3 months. Wish u had found us earlier.

 

I think I would be a fool to not consider having you consult on my case.  Let me work out the logistics and also get my PCP on board. I discussed with my husband though and our initial impression is we would like to work it out. 

 

 I don't think I will be seeing endo #1 again now that I have been referred to endo #2...but my PCP still works with her regularly.  I'll pass along your article and leave it up to him to update her maybe? 

 

Dr. Grim: If possible you might be able to get there quickly. Contact them now to see. Then you have the answers in about 10 days in DC.

 

Referring to NIH?  They are located in D.C.?  10 days....and travel....right now that seems like such a big committment.  But the thought of having sooner treatment is very tempting too.  I wonder if I should see how my initial visit with WASHU Dr.'s go and if things seem to be moving in the right direction?

 

Dr. Grim: If u are nursing would not do the Spiro. The urine numbers we need the 24 hr volume but first glance you are DASHING very well. As mor K in urine than Na. But need the urine volume on that sample.

How many times a night do u get up to pee?

Unfortunately I had to stop nursing anyway because the excess K would have probably killed my son by now (his levels were at 7.8 and I stopped nursing immediately).  Right now my son's Dr.'s (PCP & Hematologist) are not considering letting me nurse on spiro, we will see if his formula continues to cause him to need blood transfusions (due to his G6PD the soy might be contraindicative for him--no commercial formulas in the US made without some form of soy) they might consider letting me nurse again if I am only on spiro.  Dianne had mentioned maybe contacting LeLeche League for breastmilk, but unfortunately for my son he cannot have certain substances that would normally be OK for breastmilk, like aspirin or fava beans, if the donor had consumed these it would be lethal for my son.  I've considered trying to do a " 1-on-1 " breastmilk donation where I work directly with the donor mother, but with everything going on these things are difficult to arrange.   

 

Hopefully the 24 hour urine test will be in the lab work I asked endo #1 to mail to me and I should get it in a few days.  I didn't see a volume on the urine sample I had mentioned, with my levels at 74.4 for K and 37 for Na......I might just not know what I'm looking for.  I will submit the 24 hour results as soon as I get them though.

 

When I first went to the Dr. about 8 weeks ago I was easily peeing 4-5 times a night, and as I had mentioned previously, drinking about 2 gallons.  I am now drinking only about 1 gallon a day, and usually I get up once a night to pee.  Sometimes 2x.  Just out of curiousity, why does that matter?  I'm assuming increasing my K has helped with the " extreme thirst " symptoms?

 

 Dr. Grim: Chance is not zero but very low and am not aware of bilateral Ca causing Conn's.  But may be a report somewhere. Put that at the bottom of your worry list.

 

 That's good to know.  Do they usually diagnose ademas being malignant after they are removed? 

 

Thanks Dr. Grim for all of the feedback. 

 

-VIRGINIA-

[Guest guest]

No what is in your urine is what is in your diet. When aldo is given to normals (See my evolution article review) salt is retained for about 3 days then the body volume control system increases the BP to overcome the excess aldo. This is called also escape. CE Grim MD On Apr 24, 2012, at 1:04 PM, Virginia Wall wrote: Dr Grim, another question from your latest response. Wouldn't it be typical for your Na to be low in your urine, if aldo is forcing your body to hold on to it? As much as I would like to give myself false props for DASHing like an expert before I was even familiar with it, I'm sure this is not the case. I have "tried" to read more labels and "avoid" things I know are high in Na, and eat out less. But I'm sure I have VAST room for improvement. I love Mexican & Chinese food and my attempt to avoid these sodium death trap cuisines has been half-hearted at best. I will follow up with more test results as they become available to me. And I am committing to taking the sodium seriously! On Tue, Apr 24, 2012 at 9:15 AM, Clarence Grim <lowerbp2@...> wrote: The very low K is related to diet salt intake and how much Aldo you are making. Be sure u have the urine Na and K numbers correct. Most will have more Na than K in urine unless u are dashing to the max. So double check. I think you sent the units as mM/L. So need to multiply by UV to get ant excreted. Most newborns can handle high K in milk so would b sure being tested for othe causes of high K in kids. They prob have. MOST CAS are identified before surgery due to larger size greater than 3 cm or calcium in mass. Nocturia polyuria is due to low K causing renal tubule resistance to ADH. GETS better when K gets better. May your pressure be low! CE Grim MS, MD Specializing in Difficult Hypertension On Apr 23, 2012, at 21:20, Virginia Wall <virgwall@...> wrote: Dr. Grim: Recall that she has 3 small kids and needs to get back ASAP. AVS can be done later if indicated. But I have only been doing this since 1963. So it is her choice on his soon she wants to get better and caught up. Then the fine details can be worked out I would think. Serum sodium is high only is Grim stage 4 PA IE ADVANCED cases. I think you're in line with what my PCP was thinking. He doesn't like my BP being this high for this long (obviously many others in the group have much higher BP's than I do, but my PCP has been my Dr. since I was a baby and hasn't liked my BP progression in the last 4-5 years). He just wants to get me under control and quit screwing around. I will discuss with him this week before I make any decisions about the spiro, especially considering it's going to be another 4 weeks before I even have an initial discussion with my new endocrinologist. I have read your "evolution of PA" paper a couple of times but I'm still trying to understand everything. I was worried I might be at stage 4 already becuase my K has been so low, especially with trying so hard to have a high K diet & the ridiculous amount of supplements I've been taking. But maybe not? I know my BP doesn't even seem that bad compared to everyone else I've been reading about. Dr. Grim: You might remind your Indian Dr that I saw the first ever reported Indian with PA WHEN I was Dr. Conn's Fellow in 1969. He can with a letter of introduction from Indira Ghandi. He was so week he was in a wheel chair. Stayed till surgery done and walked out without the WC. IF SHE Searches JW Conn and PA Pt in Indian lit she will see it. Published in 1972 or so. She must have missed class on PA day. But we will get her up to speed. My one on one consulting fee is only $500 for a year. Can be paid in $100/month till done. Most are back on their feet in 3 months. Wish u had found us earlier. I think I would be a fool to not consider having you consult on my case. Let me work out the logistics and also get my PCP on board. I discussed with my husband though and our initial impression is we would like to work it out. I don't think I will be seeing endo #1 again now that I have been referred to endo #2...but my PCP still works with her regularly. I'll pass along your article and leave it up to him to update her maybe? Dr. Grim: If possible you might be able to get there quickly. Contact them now to see. Then you have the answers in about 10 days in DC. Referring to NIH? They are located in D.C.? 10 days....and travel....right now that seems like such a big committment. But the thought of having sooner treatment is very tempting too. I wonder if I should see how my initial visit with WASHU Dr.'s go and if things seem to be moving in the right direction? Dr. Grim: If u are nursing would not do the Spiro. The urine numbers we need the 24 hr volume but first glance you are DASHING very well. As mor K in urine than Na. But need the urine volume on that sample. How many times a night do u get up to pee? Unfortunately I had to stop nursing anyway because the excess K would have probably killed my son by now (his levels were at 7.8 and I stopped nursing immediately). Right now my son's Dr.'s (PCP & Hematologist) are not considering letting me nurse on spiro, we will see if his formula continues to cause him to need blood transfusions (due to his G6PD the soy might be contraindicative for him--no commercial formulas in the US made without some form of soy) they might consider letting me nurse again if I am only on spiro. Dianne had mentioned maybe contacting LeLeche League for breastmilk, but unfortunately for my son he cannot have certain substances that would normally be OK for breastmilk, like aspirin or fava beans, if the donor had consumed these it would be lethal for my son. I've considered trying to do a "1-on-1" breastmilk donation where I work directly with the donor mother, but with everything going on these things are difficult to arrange. Hopefully the 24 hour urine test will be in the lab work I asked endo #1 to mail to me and I should get it in a few days. I didn't see a volume on the urine sample I had mentioned, with my levels at 74.4 for K and 37 for Na......I might just not know what I'm looking for. I will submit the 24 hour results as soon as I get them though. When I first went to the Dr. about 8 weeks ago I was easily peeing 4-5 times a night, and as I had mentioned previously, drinking about 2 gallons. I am now drinking only about 1 gallon a day, and usually I get up once a night to pee. Sometimes 2x. Just out of curiousity, why does that matter? I'm assuming increasing my K has helped with the "extreme thirst" symptoms? Dr. Grim: Chance is not zero but very low and am not aware of bilateral Ca causing Conn's. But may be a report somewhere. Put that at the bottom of your worry list. That's good to know. Do they usually diagnose ademas being malignant after they are removed? Thanks Dr. Grim for all of the feedback. -VIRGINIA-

[Guest guest]

Ok I just learned from about renaming threads. That's some useful information :-). Thank you Ann & Maggie. My perspective might be a little off right now, but one of the hardest parts for me right now is not being able to breastfeed so your suggestions are useful and much appreciated. I know getting breast milk from a "bank" (thanks for the definition Maggie) is not a possibility for me because with my sons g6pd many things need to be avoided by the donor that would normally be ok (beans, and aspirin to name a couple). I know it's a possibility to work with a single donor and I am considering trying to go that route. I am hopeful I will be able to go back to breastfeeding but at some point I might need to be logical about it and let it go. Based on Dr Grims suggestions I plan on discussing with s pediatrician the fact that he should have tolerated even high amounts of K unless there was some underlying issue. Maybe the little guy thinks he's so special he needs to collect a bunch of specialists. (Hematologist, now endocrinologist...? Lol)I also wanted to share for those that are interested, some good news about my son. He has been anemic since he was born about 3 months ago (he has had 3 blood transfusions). He has a CBC (complete blood count) test weekly, and his hemoglobin is what we pay the most attention to (it tells us how many red blood cells he's making). So this week his hemoglobin was the best it has been in his life 10.8! (12 would be ideal, but above 10 is great)! Maybe the little guy is giving his mom a break from worry so she can focus on getting herself better for a little while :-). I contacted NIH and I'm thinking about going there. Right now Dr Lyssaskatos said my time frame to enter the study would be July at best. I'm kind of waiting to see how competent WASHU is first. Everything's a process with this condition isn't it? I've always just heard about things like appendicitis where you have an acute situation and you go to the hospital and have surgery. I'm kind of baffled at how long everything is taking. Endo #1 making stuff up about needing to normalize my K before we could do any testing hasn't helped. Thats six weeks of my life I'll never get back lol. What an awesome experience it has been having all of you reach out to me and show genuine concern. You have filled a void I didn't even realize I had. I'm still waiting on my 24 hr urine results, I will keep you all updated as things progress. Considering my earlier remarks about the "process" to get anything done, I'm staying on spiro for now because I have a feeling I will have plenty of time to "detox" before an AVS would be scheduled (if it is indicated). I have been on spiro for two weeks now, and my K tested thurs was 3.9, and I'm feeling much better. Except one thing, question: I don't remember this side effect from taking spiro before-does it make anyone else tired? I feel like I've taken a double dose of benadryl all the time. But, in light of everything else, that just seems like whining lol. VirginiaSent from my iPhone On Apr 27, 2012, at 11:40 AM, "maggiekat7" <ljurkovic@...> wrote:

Ann,

Amen and thank you for sharing all that. Only thing I would add is that if you need help finding a breastmilk bank, either find your local la leche league group, or call the hospital where you delivered, or your ob, and ask for a lactation consultant. If you want to find out by reading a good resource, Ina May Gaskin's current book is great, and as always, The Womanly art of Breastfeeding is also updated and details stuff like how to bank, etc. Also, Our Bodies, Ourselves, by the Boston Woman's Collective is an annual compendium of all that's women and reproductive. These are all on Amazon.

As far as breastfeeding with K, your midwife, or ob should know the impact on the baby as should the drug manufacturer. You should read about all of the meds you take while nursing. There should be advise and research related to whether or not you can use the drug while breastfeeding.

It's hard and stressful to pump and dump, but if it's temporary, your baby will benefit from breastmilk (banked) and you can possibly get back to nursing when your milk is no longer tainted. I am a strong advocate of nursing, but having nursed all of mine, I also know that whether or not you continue to nurse at this point or don't will not make or break anything. Your baby needs a healthy Mama and if you love that baby, that's what matters most.

Baseline testing is getting labs for evaluating your condition done right, and then getting a plan in place that will likely compare this first evaluation with subsequent ones, like in 6 months, then again in 6 months. Then, they have some good labs to compare with. The key is getting labs done right by someone who knows how to correctly do the labwork and read the imaging results. I went through about 5 docs who didn't do mine rigt or read them right. Then, I went to NIH, and sighed with relief. There are folks at Mayo, and others, but few. NIH is what I experienced, so I know it's good and can recommend it.

I know that when you have a little one and health issues, it's tough. I know that just the year after delivery is tough. The search for answers in this illness can drive anyone mad and that's not what you need now. You need competent doctors who can give you simple, straightforward answers, quickly and answer all your questions. Then you can have blessed, wonderful, baby time!

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> >> >>> Greetings Dr. Grim & co!

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> >> >>> 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.

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> >> >>> 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.

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> >> >>> 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.

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> >> >>> 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.

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> >> >>> 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).

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> >> >>> 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?

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> >> >>> 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.

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> >> >>> 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?

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> >> >>> 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.

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> >> >>> Regards,

> >> >>>

> >> >>> Virginia Wall

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