Jump to content
RemedySpot.com

Re: How do you get a doctor to listen?

Rate this topic

Guest guest

By Guest guest
in Health, Medicine and Natural Healing 12

 Share

Recommended Posts

Guest guest

Guest guest

Posted
Posted

Hi ,The short answer to your question - How do you get a doctor to listen? - might be "find another doctor." It sounds like you're stuck with that killer combination that I had with my last doctor, who refused to believe that I had something more than garden-variety hypertension - a doctor who is clueless that low potassium is a big red flag, and a gatekeeper nurse who likes to pretend that she's a doctor!Many of us here have had to switch doctors many, many times before we found one who would listen. Getting your allergist to give you the referral might be a good start, but if you do indeed have PA you're going to want a primary care doctor who is open minded about it, so while you're at it you may want to ask the allergist if he/she has a recommendation.And if you do have PA, you may be fine with an endocrinologist, but many of us - myself included - seem to have fared far better with nephrologists. In my experience, endocrinologists (excepting Dr Grim of course!) and cardiologists have been the hardest to work with of all - my theory is that their practices are generally filled with patients who need to be on multiple meds all the time, so they have a hard time separating out those of us who can be treated by surgery or a single med (spironolactone or eplerenone).(You can read my whole story in Files > Conn's Stories > msmith1928 PA story final 11-4-11.pdf - the link may not work but you can get there from the left sidebar.)-msmith1928Successful left laparoscopic adrenalectomy 10/13/11>> Hi everyone, I'm new to the group but from what I have read on here and elsewhere online, I feel a lot of my symptoms match what others on here have experienced with hyperaldosteronism. I'm a 25yo female and last year around February, I started to get really tired all the time. I thought it was due to a bad flu but long after recovering I could never seem to get enough sleep. Around the same time I started to get migraines on an almost daily basis (didn't realize the killer headaches were migraines at the time since I'd never had one). On top of it, my usually sharp memory was completely gone and I was stuck with extreme brain fog. With a lot of caffeine I made it to the end of the school year and made an appt with my GP in June where on top of everything I found I had extremely high bp, 196/92. Now, I had to have a physical for my new job 8 months before where my bp was perfectly normal, 124/80. My bp remained high and got started on metoprolol 25mg. At the time, I was looking for typical issues that might cause all this such as anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen and blood tests came back normal except that one thing was slightly low, and if memory serves me (which it may not :-/), it was my potassium. I also saw an allergist thinking maybe it was my allergies causing it. He was more concerned than my gp and put me on elavil for migraines (I take 10mg) and singulair for asthma so I could stop advair. As soon as I stopped advair I feel I slept much better, but still didn't feel well rested or as energetic. > > I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor what could be causing it to go up and she just acted like it is one of those things that can just happen. bs! I'm now upped to 50mg meto, she tried me on hctz but that made me feel awful with extreme muscle weakness and fatigue so I had to stop that. Now she has added amlodipine 5mg (for about a week now) but I can still tell my bp is high and the muscle weakness/tiredness has not gone away and I have dull headaches almost every day. My doctor doesn't seem to think anything is really wrong and has never tested me for anything other than a typical blood test (back in June) and a sleep study (which showed I was an inefficient sleeper, due to the advair i believe?) > > Now today I tried to get a referral from my dr to see an endo thinking that would be my best starting point based from what I have read online and family recommendation. Well the nurse calls me back asking why I would want to see an endo. I explain that my bp is still high and my migraines are returning and I am just all around fatigued and low energy. She questions me saying "don't you mean a neurologist" since I of course mentioned my migraines. I tell her no, I feel the migraines, high bp and other symptoms are all related. So she said "oh, so you're thinking thyroid issues." Well, no I'm not, but I just tell her I feel it may be a gland issue. So she just kinda laughs and says "well, I'll try to call, but they're going to tell me the same thing I told you" which was that endos don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr office soon to see if i can get in, but how do I go about making my dr hear me? I know something is wrong with me and no matter what she may think, otherwise healthy 25yos don't develop extreme hypertension over an 8 month period without something causing it. I guess if all else fails I'll call my allergist and see if he will give me the referral since he is the only one who has seemed concerned by my symptoms. > > Thank you for listening to my rant! Any advice from your own experiences would be greatly appreciated. > > >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

At it's baseline my case is very similar to yours. I fought HTN for many years, started mid 30's when I was incredibly healthy and athletic, but it would spike and I would also get very fatigue, to the point I felt sometimes I couldn;t make it up the smallest steps or even get out of bed. Years this goes on and all the time I am going to the doctors. They start me on the lisinopril, amlodipine, all the regulars, but my pressure continued to trend higher and higher. I work in the medical field as a physician assistant, and watched my pressures close, and followed up with my friends and docs frequently. But pressure, by 2004 maybe, started hitting 180/130 easy even on the meds. My colleagues would tease me that it was stress, or I needed to eat better, etc.

So the next few years it kept getting worse and they would try HCTZ wich put me in the hospital. But I would also have these weeks and months of incredible weakness and what I just couldnt explain fatigue. I HAD to take care of a large family so I got up somehow and did it, day after day, so mentally, emotionally, and physically fatigued.

I would come to find that my fatigue and other such symptoms was low potassium. I looked at my records and I never had a normal potassium in ANY of that time 2004-pretty much now. In the ER visits when my bp hot 180/140 and I would go in , they would replace my potassium and then add a med, then send me on. Saw cardio - who hospitalized me, did every heart test and they were all fine except for LVH. Ominously that docs PA saw me one night, said I was hyperthyroid, and that he'd had the same issue and to check with the doc in the am. I did - doc 100% blew it off. But added a med and sent me home after all the tests and so on.

Years went on, I got sicker and sicker, never had any control of BP then got H1N1 flu, then hyperthyroid turned on, got worse and worse, hallucinations, etc, and whole professional life was turned upside down and was made to quit working, even before I knew any diagnosis yet. Finally in 4/2010 a cariologist had a hunch, started spiro, and then I had first normal BP in over 5 years. Then the endo dx'd conn's. Thyroid got better on it's own.

A couple points. The docs are going to do what they do, try to find the best you can and do bring up these things. You have some clues standing out bigger then Dallas :

1. The uncontrolled HTN needs aldosterone and renin testing urine and serum look up in here how to do and take it to your doc.

2. The HCTZ will continue to worsen things for you. It helps you lose your potassium and does you no good

3. The bulk of the physicial complaints are almost completely likely low potassium and maybe low magnesium too - in some of us the low K got so low it was life-threatening, They still never even considered a "why" it did it.

.. They see a mildly low potassium and will completely shrug it off. Dont let them. Take some OTC potassium if they won't listen and see how you feel.

From: lisa_n87 <lisa_n87@...>Subject: How do you get a doctor to listen?hyperaldosteronism Date: Monday, March 5, 2012, 4:08 PM

Hi everyone, I'm new to the group but from what I have read on here and elsewhere online, I feel a lot of my symptoms match what others on here have experienced with hyperaldosteronism. I'm a 25yo female and last year around February, I started to get really tired all the time. I thought it was due to a bad flu but long after recovering I could never seem to get enough sleep. Around the same time I started to get migraines on an almost daily basis (didn't realize the killer headaches were migraines at the time since I'd never had one). On top of it, my usually sharp memory was completely gone and I was stuck with extreme brain fog. With a lot of caffeine I made it to the end of the school year and made an appt with my GP in June where on top of everything I found I had extremely high bp, 196/92. Now, I had to have a physical for my new job 8 months before where my bp was perfectly normal, 124/80. My bp remained high and got started on metoprolol

25mg. At the time, I was looking for typical issues that might cause all this such as anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen and blood tests came back normal except that one thing was slightly low, and if memory serves me (which it may not :-/), it was my potassium. I also saw an allergist thinking maybe it was my allergies causing it. He was more concerned than my gp and put me on elavil for migraines (I take 10mg) and singulair for asthma so I could stop advair. As soon as I stopped advair I feel I slept much better, but still didn't feel well rested or as energetic. I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor what could be causing it to go up and she just acted like it is one of those things that can just happen. bs! I'm now upped to 50mg meto, she tried me on hctz but that made me feel awful with extreme muscle weakness and fatigue so I had to stop that. Now she has

added amlodipine 5mg (for about a week now) but I can still tell my bp is high and the muscle weakness/tiredness has not gone away and I have dull headaches almost every day. My doctor doesn't seem to think anything is really wrong and has never tested me for anything other than a typical blood test (back in June) and a sleep study (which showed I was an inefficient sleeper, due to the advair i believe?) Now today I tried to get a referral from my dr to see an endo thinking that would be my best starting point based from what I have read online and family recommendation. Well the nurse calls me back asking why I would want to see an endo. I explain that my bp is still high and my migraines are returning and I am just all around fatigued and low energy. She questions me saying "don't you mean a neurologist" since I of course mentioned my migraines. I tell her no, I feel the migraines, high bp and other symptoms are all related. So she said "oh,

so you're thinking thyroid issues." Well, no I'm not, but I just tell her I feel it may be a gland issue. So she just kinda laughs and says "well, I'll try to call, but they're going to tell me the same thing I told you" which was that endos don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr office soon to see if i can get in, but how do I go about making my dr hear me? I know something is wrong with me and no matter what she may think, otherwise healthy 25yos don't develop extreme hypertension over an 8 month period without something causing it. I guess if all else fails I'll call my allergist and see if he will give me the referral since he is the only one who has seemed concerned by my symptoms. Thank you for listening to my rant! Any advice from your own experiences would be greatly appreciated.

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Hi

I don't know how helpful this is but it is what I have done on my 11yr journey

to get a diagnose. I needed some testing to see if I was in fact a person who

had PA. I soon learned that I had to be my best advocate and know more that the

GP about PA. My goal was to get the tests I needed done correctly not be nice to

the GP.

I had to let go of all the bs about doctors being god. basically I went in with

approach that this is MY health and you don't get to play god with it, you are a

gatekeeper stopping me from getting the tests I need to determine if I have PA.

I knew what I needed from them such as a aldo/renin ratio test and I asked for

it, if they said no, I argued my point and usually got what I needed, if not I

moved on. My goal is to get what I needed to be healthy. I once told a GP that I

would be booking weekly appointments to ask him the same thing each week until

he book the referral I wanted, and once I got that referral, it was to an endo

who never saw a PA case. I went and found an endo who did. I have learned this

the hard way. Be persistent and don't give up.

I do understand that some folks don't have as many health care options as I do

but this approach has worked for me, although it took a few years for me to

figure it out.

I hope that helps you.

Chris

>

>

> From: lisa_n87 <lisa_n87@...>

> Subject: How do you get a doctor to listen?

> hyperaldosteronism

> Date: Monday, March 5, 2012, 4:08 PM

>

>

>

>  

>

>

>

> Hi everyone, I'm new to the group but from what I have read on here and

elsewhere online, I feel a lot of my symptoms match what others on here have

experienced with hyperaldosteronism. I'm a 25yo female and last year around

February, I started to get really tired all the time. I thought it was due to a

bad flu but long after recovering I could never seem to get enough sleep. Around

the same time I started to get migraines on an almost daily basis (didn't

realize the killer headaches were migraines at the time since I'd never had

one). On top of it, my usually sharp memory was completely gone and I was stuck

with extreme brain fog. With a lot of caffeine I made it to the end of the

school year and made an appt with my GP in June where on top of everything I

found I had extremely high bp, 196/92. Now, I had to have a physical for my new

job 8 months before where my bp was perfectly normal, 124/80. My bp remained

high and got started on metoprolol 25mg. At

> the time, I was looking for typical issues that might cause all this such as

anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen

and blood tests came back normal except that one thing was slightly low, and if

memory serves me (which it may not :-/), it was my potassium. I also saw an

allergist thinking maybe it was my allergies causing it. He was more concerned

than my gp and put me on elavil for migraines (I take 10mg) and singulair for

asthma so I could stop advair. As soon as I stopped advair I feel I slept much

better, but still didn't feel well rested or as energetic.

>

> I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor

what could be causing it to go up and she just acted like it is one of those

things that can just happen. bs! I'm now upped to 50mg meto, she tried me on

hctz but that made me feel awful with extreme muscle weakness and fatigue so I

had to stop that. Now she has added amlodipine 5mg (for about a week now) but I

can still tell my bp is high and the muscle weakness/tiredness has not gone away

and I have dull headaches almost every day. My doctor doesn't seem to think

anything is really wrong and has never tested me for anything other than a

typical blood test (back in June) and a sleep study (which showed I was an

inefficient sleeper, due to the advair i believe?)

>

> Now today I tried to get a referral from my dr to see an endo thinking that

would be my best starting point based from what I have read online and family

recommendation. Well the nurse calls me back asking why I would want to see an

endo. I explain that my bp is still high and my migraines are returning and I am

just all around fatigued and low energy. She questions me saying " don't you mean

a neurologist " since I of course mentioned my migraines. I tell her no, I feel

the migraines, high bp and other symptoms are all related. So she said " oh, so

you're thinking thyroid issues. " Well, no I'm not, but I just tell her I feel it

may be a gland issue. So she just kinda laughs and says " well, I'll try to call,

but they're going to tell me the same thing I told you " which was that endos

don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr

office soon to see if i can get in, but how do I go about making my dr hear me?

I know something

> is wrong with me and no matter what she may think, otherwise healthy 25yos

don't develop extreme hypertension over an 8 month period without something

causing it. I guess if all else fails I'll call my allergist and see if he will

give me the referral since he is the only one who has seemed concerned by my

symptoms.

>

> Thank you for listening to my rant! Any advice from your own experiences would

be greatly appreciated.

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

If I can just add one point to 's comments: remember the potssium (K)

range is an averge. Most labs report 3.5 to 5 but many here have reported

problems when it got " low/normal " (3.6, 3.7). Getting onto the DASH Eating Plan

(Diet) and keeping Salt (Na) under 1500mg and Potassium (K) up to 4700mg would

be good place to start while you look for a trainable doctor!

>

>

> From: lisa_n87 <lisa_n87@...>

> Subject: How do you get a doctor to listen?

> hyperaldosteronism

> Date: Monday, March 5, 2012, 4:08 PM

>

>

>

>  

>

>

>

> Hi everyone, I'm new to the group but from what I have read on here and

elsewhere online, I feel a lot of my symptoms match what others on here have

experienced with hyperaldosteronism. I'm a 25yo female and last year around

February, I started to get really tired all the time. I thought it was due to a

bad flu but long after recovering I could never seem to get enough sleep. Around

the same time I started to get migraines on an almost daily basis (didn't

realize the killer headaches were migraines at the time since I'd never had

one). On top of it, my usually sharp memory was completely gone and I was stuck

with extreme brain fog. With a lot of caffeine I made it to the end of the

school year and made an appt with my GP in June where on top of everything I

found I had extremely high bp, 196/92. Now, I had to have a physical for my new

job 8 months before where my bp was perfectly normal, 124/80. My bp remained

high and got started on metoprolol 25mg. At

> the time, I was looking for typical issues that might cause all this such as

anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen

and blood tests came back normal except that one thing was slightly low, and if

memory serves me (which it may not :-/), it was my potassium. I also saw an

allergist thinking maybe it was my allergies causing it. He was more concerned

than my gp and put me on elavil for migraines (I take 10mg) and singulair for

asthma so I could stop advair. As soon as I stopped advair I feel I slept much

better, but still didn't feel well rested or as energetic.

>

> I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor

what could be causing it to go up and she just acted like it is one of those

things that can just happen. bs! I'm now upped to 50mg meto, she tried me on

hctz but that made me feel awful with extreme muscle weakness and fatigue so I

had to stop that. Now she has added amlodipine 5mg (for about a week now) but I

can still tell my bp is high and the muscle weakness/tiredness has not gone away

and I have dull headaches almost every day. My doctor doesn't seem to think

anything is really wrong and has never tested me for anything other than a

typical blood test (back in June) and a sleep study (which showed I was an

inefficient sleeper, due to the advair i believe?)

>

> Now today I tried to get a referral from my dr to see an endo thinking that

would be my best starting point based from what I have read online and family

recommendation. Well the nurse calls me back asking why I would want to see an

endo. I explain that my bp is still high and my migraines are returning and I am

just all around fatigued and low energy. She questions me saying " don't you mean

a neurologist " since I of course mentioned my migraines. I tell her no, I feel

the migraines, high bp and other symptoms are all related. So she said " oh, so

you're thinking thyroid issues. " Well, no I'm not, but I just tell her I feel it

may be a gland issue. So she just kinda laughs and says " well, I'll try to call,

but they're going to tell me the same thing I told you " which was that endos

don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr

office soon to see if i can get in, but how do I go about making my dr hear me?

I know something

> is wrong with me and no matter what she may think, otherwise healthy 25yos

don't develop extreme hypertension over an 8 month period without something

causing it. I guess if all else fails I'll call my allergist and see if he will

give me the referral since he is the only one who has seemed concerned by my

symptoms.

>

> Thank you for listening to my rant! Any advice from your own experiences would

be greatly appreciated.

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Hey don't forget that I trained first in Internal Medicine then in both Nephrology and Endocrinology (1 year each) and have been in Departments of Nephrology, Endocrinology, Cardiology and Hypertension at various Academic Institutions. So more cross trained than most. And published more than most. CE Grim MDOn Mar 11, 2012, at 10:20 AM, msmith_1928 wrote: Hi ,The short answer to your question - How do you get a doctor to listen? - might be "find another doctor." It sounds like you're stuck with that killer combination that I had with my last doctor, who refused to believe that I had something more than garden-variety hypertension - a doctor who is clueless that low potassium is a big red flag, and a gatekeeper nurse who likes to pretend that she's a doctor!Many of us here have had to switch doctors many, many times before we found one who would listen. Getting your allergist to give you the referral might be a good start, but if you do indeed have PA you're going to want a primary care doctor who is open minded about it, so while you're at it you may want to ask the allergist if he/she has a recommendation.And if you do have PA, you may be fine with an endocrinologist, but many of us - myself included - seem to have fared far better with nephrologists. In my experience, endocrinologists (excepting Dr Grim of course!) and cardiologists have been the hardest to work with of all - my theory is that their practices are generally filled with patients who need to be on multiple meds all the time, so they have a hard time separating out those of us who can be treated by surgery or a single med (spironolactone or eplerenone).(You can read my whole story in Files > Conn's Stories > msmith1928 PA story final 11-4-11.pdf - the link may not work but you can get there from the left sidebar.)-msmith1928Successful left laparoscopic adrenalectomy 10/13/11>> Hi everyone, I'm new to the group but from what I have read on here and elsewhere online, I feel a lot of my symptoms match what others on here have experienced with hyperaldosteronism. I'm a 25yo female and last year around February, I started to get really tired all the time. I thought it was due to a bad flu but long after recovering I could never seem to get enough sleep. Around the same time I started to get migraines on an almost daily basis (didn't realize the killer headaches were migraines at the time since I'd never had one). On top of it, my usually sharp memory was completely gone and I was stuck with extreme brain fog. With a lot of caffeine I made it to the end of the school year and made an appt with my GP in June where on top of everything I found I had extremely high bp, 196/92. Now, I had to have a physical for my new job 8 months before where my bp was perfectly normal, 124/80. My bp remained high and got started on metoprolol 25mg. At the time, I was looking for typical issues that might cause all this such as anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen and blood tests came back normal except that one thing was slightly low, and if memory serves me (which it may not :-/), it was my potassium. I also saw an allergist thinking maybe it was my allergies causing it. He was more concerned than my gp and put me on elavil for migraines (I take 10mg) and singulair for asthma so I could stop advair. As soon as I stopped advair I feel I slept much better, but still didn't feel well rested or as energetic. > > I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor what could be causing it to go up and she just acted like it is one of those things that can just happen. bs! I'm now upped to 50mg meto, she tried me on hctz but that made me feel awful with extreme muscle weakness and fatigue so I had to stop that. Now she has added amlodipine 5mg (for about a week now) but I can still tell my bp is high and the muscle weakness/tiredness has not gone away and I have dull headaches almost every day. My doctor doesn't seem to think anything is really wrong and has never tested me for anything other than a typical blood test (back in June) and a sleep study (which showed I was an inefficient sleeper, due to the advair i believe?) > > Now today I tried to get a referral from my dr to see an endo thinking that would be my best starting point based from what I have read online and family recommendation. Well the nurse calls me back asking why I would want to see an endo. I explain that my bp is still high and my migraines are returning and I am just all around fatigued and low energy. She questions me saying "don't you mean a neurologist" since I of course mentioned my migraines. I tell her no, I feel the migraines, high bp and other symptoms are all related. So she said "oh, so you're thinking thyroid issues." Well, no I'm not, but I just tell her I feel it may be a gland issue. So she just kinda laughs and says "well, I'll try to call, but they're going to tell me the same thing I told you" which was that endos don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr office soon to see if i can get in, but how do I go about making my dr hear me? I know something is wrong with me and no matter what she may think, otherwise healthy 25yos don't develop extreme hypertension over an 8 month period without something causing it. I guess if all else fails I'll call my allergist and see if he will give me the referral since he is the only one who has seemed concerned by my symptoms. > > Thank you for listening to my rant! Any advice from your own experiences would be greatly appreciated. > > >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

OTC K usually is not enough to get it up. Look at the labels.I recommend low sodium V-8 which will give you 1,000 mg of K or ~26 mM or mEq.And eat less salt so you are not peeing out the K. This is also known as the DASH Unless you know of an OTC that has that much. Just in case you missed our intro: Welcome to the exciting world of Hyperaldosteronism You are in the right place! I am Dr. CE Grim a retired Professor of Medicine and Endocrinology. I have had a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963 as a 4th year medical student. I did a Nephrology Fellowship at Duke and an Endocrinology and Metabolism Fellowship with Dr. Conn (1969-70). I have been on the faculty of the University of MO, Indiana Univ, UCLA/ R. Drew, and the Medical College of Wisconsin in Divisions of Nephrology, Endocrinology, Hypertension, Cardiology and Epidemiology. I have published over 240 papers and book chapters in most areas of the broad discipline of High Blood Pressure. My CV is in our files for details. The GOAL of our group is to teach you and your health care team about the ins and outs of the causes, diagnosis and control of the many forms of hyperaldosteronism. The steps below will introduce you into the fascinating world of high blood pressure, salt and potassium and the role of the adrenal hormone aldosterone in health and disease. Doing these in sequence will save you time and effort in getting up to speed in taking control of you health and educating your own health care team. While we can’t make you a doctor we will make you into a pretty good BP doctor-a skill that you will have for life. 1. Overview: Read my article in our files on the evolution of PA (Evolution_of_PA-Grim.pdf ) and take to all members of health care team. Tell us what stage you believe you are in. This is a brief review of most causes of hyperaldosteronism, high blood pressure, low potassium (K). Be certain that you and your health care team understand the key role of excess diet salt in HTN and especially in PA. Go to: http://www.worldactiononsalt.com/evidence/treatment_trials.htm For a state of the art and science discussion of salt and health. 2. Other patients with hyperaldosteronism (Conn’s syndrome). Read our Conn's stories in our files and then give us your own in as much detail as you can. Dr. Conn was the first to describe this disease process and the syndrome is named after him. To see others' stories, on the Hyperaldosteronism home page, go to Files/Conn’s Stories. You'll find instructions in "A - How to put your story here.doc "Then send us your story in an email and then we will likely ask more questions and make suggestions before you upload it to our files. 3. Hyperaldosteronism and Salt: The deadly Duo. Eating Plan to control high blood pressure due to hyperaldosteronism and most others with high blood pressure. This will reduce your need for medications and in many will get your BP and K to goal without meds.. Get the DASH diet book by T. et al, read it and use it: $8 in paperback at your local bookstore. If they don’t have it ask them to order it for you. Learning to eat the DASH way will play a major role in your road to good BP and K control and, in many of our folks here, will revolutionize your life. Go to chapter 9 and do the 14 day challenge. Tell your Dr you are doing this as your BP may plummet if you are on other meds in only 2-3 days. or go to http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdf download this 64 page booklet free and do the Week on the DASH Diet for 2 weeks. If you are on BP meds be prepared for a large fall in BP and let your Dr. know you are doing this. Or go to (but costs money) DASH Diet for Health ProgramThe DASH Diet for Health Program is designed to help you improve your eating and exercise habits. Twice each week we will provide you with information on our website about food, food preparation, eating out, losing weight, getting fit and much more. In addition to providing new information each week on our website, we create a web page specially for you where you can track progress in areas such as your weight, blood pressure, and exercise.http://www.dashforhealth.com/ I strongly recommend you get the book and read it now! 4. Measure your BP: Measure your BP daily so you can see if it is getting better. If you are taking meds be sure to tell your health care team you are doing this as your BP may plummet to normal quickly. We recommend you use a device you listen to and will help you learn how to do this. If this is not something you want to do we can teach a significant other how to do it. See sharedcareinc.com or email to sharedcare@... to order a video on how to do this. If you already have one we will teach you how to teach your health care team how to validate your device. Your life and health depends on accurate BP measurements. Go to the amricanheart.org and download the Guidelines for Human Blood Pressure Measurement. Insist the your health care team do BP the AHA way. Your life is in the hands of those who measure your BP. Never trust your life to an automatic BP machine unless you know it is accurate on YOU. 5. Genetics and your BP: Go to familyhistory.hhs.gov and do your detailed family medical history so we can review with you to help Dx familial causes of high blood pressure and heart disease. If BP runs in your family you may save lives in your family by checking their BP yourself. There is a brief discussion of this in my Evolution Article. 6. How to DX and treat PA: Go to our file/Conn's Articles of Note/Medications/Bravo spir 1973.pdf and read this article and take to your health care team. It is old but still one of the best in the medical management of PA. Also see our file from the Endocrine Society Guidelines on PA. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day. 1. Eat a high salt diet for 2 weeks-at least 4000 mg of Na a day.2. No BP meds in last 4-12 weeks depending on meds and Drs advice.3. Collect 24 hr urine for Na, K and creatinine and aldosterone. Do not lose a drop of this liquid gold. It is impossible to interpret the renin and aldo without this.4. The morning you finish the 24 hr urine have fasting blood drawn for renin, aldo and K using our guidelines to get an accurate K. Try to get this done about 1-4 hours after you have been out of bed.5. Send us the results with the normal values for your lab.6. If you ever have a salt (saline) infusion test for PA be certain to ask them to measure how much you pee during the 4 hours of the infusion. If it is 1-1.5 liter of urine it strongly suggests that you may have PA. If more tha 1.5 L you almost certainly have PA. I call this Dr. Grim’s “Quick Pee Test” for PA. Our PA Registry: If you have been Dxed with PA already and are on Rx or have had surgery please go to http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379 and complete our survey with as much information as you know. If there is some information you don't know ask us and we will help. If you need to update this as you journey thru the diagnostic/treatment process you can add another entry but label it as Nameyymmdd. For example today 4/20/11 for me would be Grim110420. This way of writing the date is an ever increasing number and will allow us and you to sort your multiple entries into a dated order. We are working on a more extensive database. 8. Learn the language: If you are new to medical lingo then download the acroyms from bloodpressureline/message/291869. Salt and high blood pressure: To learn the state of the science of salt and blood pressure please spend some time looking at http://www.worldactiononsalt.com/evidence/treatment_trials.htm10. Become a HBP expert consumer: Expect that it will take at least several weeks to get all this digested and to learn the new language of high blood pressure health care. As most doctors and nurses in practice have had very little training in high blood pressure you must become an expert yourself. For example most have never had anyone listen with them with a double stethoscope to verify that they can hear BP sounds. We cannot make you a doctor but we will make you a pretty good BP doctor.11. How High Blood Pressure should be managed: Go to nih.gov and download and read the Joint National Commission (JNC) Report 7 to get an overview on current guidelines. I ask all my secretaries to read this so they can communicate the importance of high blood pressure to my patients. JNC 8 will be out soon.Then: get (and study) the Hypertension Primer from americanheart.org. This is the most up-to-date compendium of what is known about high blood pressure and what every Dr. should know when they graduate from Medical School. Every chapter is only 2-3 pages. Read one chapter every week-night and you will finish it in about a year. I am working on a reading guide for lay people for the Primer. Stay tuned.12. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for.13. One-on-one Consulting: I can provide individual consulting if you do not want to go public. If you want individual one-on-one consulting for you and your Doctor contract me directly at lowerbp2@....May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACCBoard Certified in Internal Medicine, Geriatrics, and High Blood Pressure Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. On Mar 11, 2012, at 10:56 AM, Bingham wrote: At it's baseline my case is very similar to yours. I fought HTN for many years, started mid 30's when I was incredibly healthy and athletic, but it would spike and I would also get very fatigue, to the point I felt sometimes I couldn;t make it up the smallest steps or even get out of bed. Years this goes on and all the time I am going to the doctors. They start me on the lisinopril, amlodipine, all the regulars, but my pressure continued to trend higher and higher. I work in the medical field as a physician assistant, and watched my pressures close, and followed up with my friends and docs frequently. But pressure, by 2004 maybe, started hitting 180/130 easy even on the meds. My colleagues would tease me that it was stress, or I needed to eat better, etc. So the next few years it kept getting worse and they would try HCTZ wich put me in the hospital. But I would also have these weeks and months of incredible weakness and what I just couldnt explain fatigue. I HAD to take care of a large family so I got up somehow and did it, day after day, so mentally, emotionally, and physically fatigued. I would come to find that my fatigue and other such symptoms was low potassium. I looked at my records and I never had a normal potassium in ANY of that time 2004-pretty much now. In the ER visits when my bp hot 180/140 and I would go in , they would replace my potassium and then add a med, then send me on. Saw cardio - who hospitalized me, did every heart test and they were all fine except for LVH. Ominously that docs PA saw me one night, said I was hyperthyroid, and that he'd had the same issue and to check with the doc in the am. I did - doc 100% blew it off. But added a med and sent me home after all the tests and so on. Years went on, I got sicker and sicker, never had any control of BP then got H1N1 flu, then hyperthyroid turned on, got worse and worse, hallucinations, etc, and whole professional life was turned upside down and was made to quit working, even before I knew any diagnosis yet. Finally in 4/2010 a cariologist had a hunch, started spiro, and then I had first normal BP in over 5 years. Then the endo dx'd conn's. Thyroid got better on it's own. A couple points. The docs are going to do what they do, try to find the best you can and do bring up these things. You have some clues standing out bigger then Dallas : 1. The uncontrolled HTN needs aldosterone and renin testing urine and serum look up in here how to do and take it to your doc. 2. The HCTZ will continue to worsen things for you. It helps you lose your potassium and does you no good 3. The bulk of the physicial complaints are almost completely likely low potassium and maybe low magnesium too - in some of us the low K got so low it was life-threatening, They still never even considered a "why" it did it. . They see a mildly low potassium and will completely shrug it off. Dont let them. Take some OTC potassium if they won't listen and see how you feel. From: lisa_n87 <lisa_n87@...>Subject: How do you get a doctor to listen?hyperaldosteronism Date: Monday, March 5, 2012, 4:08 PM Hi everyone, I'm new to the group but from what I have read on here and elsewhere online, I feel a lot of my symptoms match what others on here have experienced with hyperaldosteronism. I'm a 25yo female and last year around February, I started to get really tired all the time. I thought it was due to a bad flu but long after recovering I could never seem to get enough sleep. Around the same time I started to get migraines on an almost daily basis (didn't realize the killer headaches were migraines at the time since I'd never had one). On top of it, my usually sharp memory was completely gone and I was stuck with extreme brain fog. With a lot of caffeine I made it to the end of the school year and made an appt with my GP in June where on top of everything I found I had extremely high bp, 196/92. Now, I had to have a physical for my new job 8 months before where my bp was perfectly normal, 124/80. My bp remained high and got started on metoprolol 25mg. At the time, I was looking for typical issues that might cause all this such as anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen and blood tests came back normal except that one thing was slightly low, and if memory serves me (which it may not :-/), it was my potassium. I also saw an allergist thinking maybe it was my allergies causing it. He was more concerned than my gp and put me on elavil for migraines (I take 10mg) and singulair for asthma so I could stop advair. As soon as I stopped advair I feel I slept much better, but still didn't feel well rested or as energetic. I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor what could be causing it to go up and she just acted like it is one of those things that can just happen. bs! I'm now upped to 50mg meto, she tried me on hctz but that made me feel awful with extreme muscle weakness and fatigue so I had to stop that. Now she has added amlodipine 5mg (for about a week now) but I can still tell my bp is high and the muscle weakness/tiredness has not gone away and I have dull headaches almost every day. My doctor doesn't seem to think anything is really wrong and has never tested me for anything other than a typical blood test (back in June) and a sleep study (which showed I was an inefficient sleeper, due to the advair i believe?) Now today I tried to get a referral from my dr to see an endo thinking that would be my best starting point based from what I have read online and family recommendation. Well the nurse calls me back asking why I would want to see an endo. I explain that my bp is still high and my migraines are returning and I am just all around fatigued and low energy. She questions me saying "don't you mean a neurologist" since I of course mentioned my migraines. I tell her no, I feel the migraines, high bp and other symptoms are all related. So she said "oh, so you're thinking thyroid issues." Well, no I'm not, but I just tell her I feel it may be a gland issue. So she just kinda laughs and says "well, I'll try to call, but they're going to tell me the same thing I told you" which was that endos don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr office soon to see if i can get in, but how do I go about making my dr hear me? I know something is wrong with me and no matter what she may think, otherwise healthy 25yos don't develop extreme hypertension over an 8 month period without something causing it. I guess if all else fails I'll call my allergist and see if he will give me the referral since he is the only one who has seemed concerned by my symptoms. Thank you for listening to my rant! Any advice from your own experiences would be greatly appreciated.

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

it takes alot of the potassium gluconate - about 2 tabs 3 x a day - but the best option is a strong diet of course. I don't do the prescription K cause they all have chloride and for some reason choride gives me the worst headaches,

From: lisa_n87 <lisa_n87@...>Subject: How do you get a doctor to listen?hyperaldosteronism Date: Monday, March 5, 2012, 4:08 PM

Hi everyone, I'm new to the group but from what I have read on here and elsewhere online, I feel a lot of my symptoms match what others on here have experienced with hyperaldosteronism. I'm a 25yo female and last year around February, I started to get really tired all the time. I thought it was due to a bad flu but long after recovering I could never seem to get enough sleep. Around the same time I started to get migraines on an almost daily basis (didn't realize the killer headaches were migraines at the time since I'd never had one). On top of it, my usually sharp memory was completely gone and I was stuck with extreme brain fog. With a lot of caffeine I made it to the end of the school year and made an appt with my GP in June where on top of everything I found I had extremely high bp, 196/92. Now, I had to have a physical for my new job 8 months before where my bp was perfectly normal, 124/80. My bp remained high and got started on metoprolol

25mg. At the time, I was looking for typical issues that might cause all this such as anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen and blood tests came back normal except that one thing was slightly low, and if memory serves me (which it may not :-/), it was my potassium. I also saw an allergist thinking maybe it was my allergies causing it. He was more concerned than my gp and put me on elavil for migraines (I take 10mg) and singulair for asthma so I could stop advair. As soon as I stopped advair I feel I slept much better, but still didn't feel well rested or as energetic. I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor what could be causing it to go up and she just acted like it is one of those things that can just happen. bs! I'm now upped to 50mg meto, she tried me on hctz but that made me feel awful with extreme muscle weakness and fatigue so I had to stop that. Now she has

added amlodipine 5mg (for about a week now) but I can still tell my bp is high and the muscle weakness/tiredness has not gone away and I have dull headaches almost every day. My doctor doesn't seem to think anything is really wrong and has never tested me for anything other than a typical blood test (back in June) and a sleep study (which showed I was an inefficient sleeper, due to the advair i believe?) Now today I tried to get a referral from my dr to see an endo thinking that would be my best starting point based from what I have read online and family recommendation. Well the nurse calls me back asking why I would want to see an endo. I explain that my bp is still high and my migraines are returning and I am just all around fatigued and low energy. She questions me saying "don't you mean a neurologist" since I of course mentioned my migraines. I tell her no, I feel the migraines, high bp and other symptoms are all related. So she said "oh,

so you're thinking thyroid issues." Well, no I'm not, but I just tell her I feel it may be a gland issue. So she just kinda laughs and says "well, I'll try to call, but they're going to tell me the same thing I told you" which was that endos don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr office soon to see if i can get in, but how do I go about making my dr hear me? I know something is wrong with me and no matter what she may think, otherwise healthy 25yos don't develop extreme hypertension over an 8 month period without something causing it. I guess if all else fails I'll call my allergist and see if he will give me the referral since he is the only one who has seemed concerned by my symptoms. Thank you for listening to my rant! Any advice from your own experiences would be greatly appreciated.

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

I guess my fear with changing my diet further(already follow fairly close to a

DASH diet) or taking a potassium supplement is that if it raises it high enough

to be within normal range on a blood test I no longer have the evidence from

testing I feel is needed to convince my doctor that something more is wrong with

me. I plan on finding a different doctor so depending on how that goes that is

when I will request renin/aldosterone testing.

>

>

> From: lisa_n87 <lisa_n87@...>

> Subject: How do you get a doctor to listen?

> hyperaldosteronism

> Date: Monday, March 5, 2012, 4:08 PM

>

>

>

>  

>

>

>

> Hi everyone, I'm new to the group but from what I have read on here and

elsewhere online, I feel a lot of my symptoms match what others on here have

experienced with hyperaldosteronism. I'm a 25yo female and last year around

February, I started to get really tired all the time. I thought it was due to a

bad flu but long after recovering I could never seem to get enough sleep. Around

the same time I started to get migraines on an almost daily basis (didn't

realize the killer headaches were migraines at the time since I'd never had

one). On top of it, my usually sharp memory was completely gone and I was stuck

with extreme brain fog. With a lot of caffeine I made it to the end of the

school year and made an appt with my GP in June where on top of everything I

found I had extremely high bp, 196/92. Now, I had to have a physical for my new

job 8 months before where my bp was perfectly normal, 124/80. My bp remained

high and got started on metoprolol 25mg. At

> the time, I was looking for typical issues that might cause all this such as

anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen

and blood tests came back normal except that one thing was slightly low, and if

memory serves me (which it may not :-/), it was my potassium. I also saw an

allergist thinking maybe it was my allergies causing it. He was more concerned

than my gp and put me on elavil for migraines (I take 10mg) and singulair for

asthma so I could stop advair. As soon as I stopped advair I feel I slept much

better, but still didn't feel well rested or as energetic.

>

> I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor

what could be causing it to go up and she just acted like it is one of those

things that can just happen. bs! I'm now upped to 50mg meto, she tried me on

hctz but that made me feel awful with extreme muscle weakness and fatigue so I

had to stop that. Now she has added amlodipine 5mg (for about a week now) but I

can still tell my bp is high and the muscle weakness/tiredness has not gone away

and I have dull headaches almost every day. My doctor doesn't seem to think

anything is really wrong and has never tested me for anything other than a

typical blood test (back in June) and a sleep study (which showed I was an

inefficient sleeper, due to the advair i believe?)

>

> Now today I tried to get a referral from my dr to see an endo thinking that

would be my best starting point based from what I have read online and family

recommendation. Well the nurse calls me back asking why I would want to see an

endo. I explain that my bp is still high and my migraines are returning and I am

just all around fatigued and low energy. She questions me saying " don't you mean

a neurologist " since I of course mentioned my migraines. I tell her no, I feel

the migraines, high bp and other symptoms are all related. So she said " oh, so

you're thinking thyroid issues. " Well, no I'm not, but I just tell her I feel it

may be a gland issue. So she just kinda laughs and says " well, I'll try to call,

but they're going to tell me the same thing I told you " which was that endos

don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr

office soon to see if i can get in, but how do I go about making my dr hear me?

I know something

> is wrong with me and no matter what she may think, otherwise healthy 25yos

don't develop extreme hypertension over an 8 month period without something

causing it. I guess if all else fails I'll call my allergist and see if he will

give me the referral since he is the only one who has seemed concerned by my

symptoms.

>

> Thank you for listening to my rant! Any advice from your own experiences would

be greatly appreciated.

>

>

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

From what I read online and from other stories in this group I first thought of

trying to see a nephrologist. After talking with my mom about my symptoms and

how they are not going away she thought an endo might be easier to get an appt

with. However, if I can't find a way to get my doctor to give me a referral to

an endo, I don't see how I would get one to see a nephrologist. I think a new

doctor is the answer. Hopefully I won't get the same non-reaction from a new

doctor as I did from my gp.

> >

> > Hi everyone, I'm new to the group but from what I have read on here

> and elsewhere online, I feel a lot of my symptoms match what others on

> here have experienced with hyperaldosteronism. I'm a 25yo female and

> last year around February, I started to get really tired all the time. I

> thought it was due to a bad flu but long after recovering I could never

> seem to get enough sleep. Around the same time I started to get

> migraines on an almost daily basis (didn't realize the killer headaches

> were migraines at the time since I'd never had one). On top of it, my

> usually sharp memory was completely gone and I was stuck with extreme

> brain fog. With a lot of caffeine I made it to the end of the school

> year and made an appt with my GP in June where on top of everything I

> found I had extremely high bp, 196/92. Now, I had to have a physical for

> my new job 8 months before where my bp was perfectly normal, 124/80. My

> bp remained high and got started on metoprolol 25mg. At the time, I was

> looking for typical issues that might cause all this such as anemia,

> thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen

> and blood tests came back normal except that one thing was slightly low,

> and if memory serves me (which it may not :-/), it was my potassium. I

> also saw an allergist thinking maybe it was my allergies causing it. He

> was more concerned than my gp and put me on elavil for migraines (I take

> 10mg) and singulair for asthma so I could stop advair. As soon as I

> stopped advair I feel I slept much better, but still didn't feel well

> rested or as energetic.

> >

> > I had my 6 month checkup and my bp was high again at 174/90. I asked

> my doctor what could be causing it to go up and she just acted like it

> is one of those things that can just happen. bs! I'm now upped to 50mg

> meto, she tried me on hctz but that made me feel awful with extreme

> muscle weakness and fatigue so I had to stop that. Now she has added

> amlodipine 5mg (for about a week now) but I can still tell my bp is high

> and the muscle weakness/tiredness has not gone away and I have dull

> headaches almost every day. My doctor doesn't seem to think anything is

> really wrong and has never tested me for anything other than a typical

> blood test (back in June) and a sleep study (which showed I was an

> inefficient sleeper, due to the advair i believe?)

> >

> > Now today I tried to get a referral from my dr to see an endo thinking

> that would be my best starting point based from what I have read online

> and family recommendation. Well the nurse calls me back asking why I

> would want to see an endo. I explain that my bp is still high and my

> migraines are returning and I am just all around fatigued and low

> energy. She questions me saying " don't you mean a neurologist " since I

> of course mentioned my migraines. I tell her no, I feel the migraines,

> high bp and other symptoms are all related. So she said " oh, so you're

> thinking thyroid issues. " Well, no I'm not, but I just tell her I feel

> it may be a gland issue. So she just kinda laughs and says " well, I'll

> try to call, but they're going to tell me the same thing I told you "

> which was that endos don't deal with high bp and migraines. Errr. I'm

> hoping to hear back from my dr office soon to see if i can get in, but

> how do I go about making my dr hear me? I know something is wrong with

> me and no matter what she may think, otherwise healthy 25yos don't

> develop extreme hypertension over an 8 month period without something

> causing it. I guess if all else fails I'll call my allergist and see if

> he will give me the referral since he is the only one who has seemed

> concerned by my symptoms.

> >

> > Thank you for listening to my rant! Any advice from your own

> experiences would be greatly appreciated.

> >

> >

> >

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Whle you are at it, ask your doctor for a referal to a clinical trial at NIH (go

to their website and search the studies or , can you find a link and post it

to Dr. L's protocol?) I went through the ridiculous search for a doc and after

months of ridiculousness, found that NIH evaluates and treats endocrine issues.

And I am currently at NIH getting evaluated. I have seen 3 docs today all of

whom know more and are soooo different than all the ones I have seen at home.

And it is such a breath of fresh air. My first day here and I would recommend

it to anyone before they tear their hair out. It's a trip! I will know more

about my body than I ever imagined by week's end and I will have all of my

questions answered. They are still taking patients and all you pay for is your

transportation there. They do AVS if necessary, as well as adrenal surgery as

needed. Tomorrow, I have a Saline Supression test and a CT scan.

> > >

> > > Hi everyone, I'm new to the group but from what I have read on here

> > and elsewhere online, I feel a lot of my symptoms match what others on

> > here have experienced with hyperaldosteronism. I'm a 25yo female and

> > last year around February, I started to get really tired all the time. I

> > thought it was due to a bad flu but long after recovering I could never

> > seem to get enough sleep. Around the same time I started to get

> > migraines on an almost daily basis (didn't realize the killer headaches

> > were migraines at the time since I'd never had one). On top of it, my

> > usually sharp memory was completely gone and I was stuck with extreme

> > brain fog. With a lot of caffeine I made it to the end of the school

> > year and made an appt with my GP in June where on top of everything I

> > found I had extremely high bp, 196/92. Now, I had to have a physical for

> > my new job 8 months before where my bp was perfectly normal, 124/80. My

> > bp remained high and got started on metoprolol 25mg. At the time, I was

> > looking for typical issues that might cause all this such as anemia,

> > thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen

> > and blood tests came back normal except that one thing was slightly low,

> > and if memory serves me (which it may not :-/), it was my potassium. I

> > also saw an allergist thinking maybe it was my allergies causing it. He

> > was more concerned than my gp and put me on elavil for migraines (I take

> > 10mg) and singulair for asthma so I could stop advair. As soon as I

> > stopped advair I feel I slept much better, but still didn't feel well

> > rested or as energetic.

> > >

> > > I had my 6 month checkup and my bp was high again at 174/90. I asked

> > my doctor what could be causing it to go up and she just acted like it

> > is one of those things that can just happen. bs! I'm now upped to 50mg

> > meto, she tried me on hctz but that made me feel awful with extreme

> > muscle weakness and fatigue so I had to stop that. Now she has added

> > amlodipine 5mg (for about a week now) but I can still tell my bp is high

> > and the muscle weakness/tiredness has not gone away and I have dull

> > headaches almost every day. My doctor doesn't seem to think anything is

> > really wrong and has never tested me for anything other than a typical

> > blood test (back in June) and a sleep study (which showed I was an

> > inefficient sleeper, due to the advair i believe?)

> > >

> > > Now today I tried to get a referral from my dr to see an endo thinking

> > that would be my best starting point based from what I have read online

> > and family recommendation. Well the nurse calls me back asking why I

> > would want to see an endo. I explain that my bp is still high and my

> > migraines are returning and I am just all around fatigued and low

> > energy. She questions me saying " don't you mean a neurologist " since I

> > of course mentioned my migraines. I tell her no, I feel the migraines,

> > high bp and other symptoms are all related. So she said " oh, so you're

> > thinking thyroid issues. " Well, no I'm not, but I just tell her I feel

> > it may be a gland issue. So she just kinda laughs and says " well, I'll

> > try to call, but they're going to tell me the same thing I told you "

> > which was that endos don't deal with high bp and migraines. Errr. I'm

> > hoping to hear back from my dr office soon to see if i can get in, but

> > how do I go about making my dr hear me? I know something is wrong with

> > me and no matter what she may think, otherwise healthy 25yos don't

> > develop extreme hypertension over an 8 month period without something

> > causing it. I guess if all else fails I'll call my allergist and see if

> > he will give me the referral since he is the only one who has seemed

> > concerned by my symptoms.

> > >

> > > Thank you for listening to my rant! Any advice from your own

> > experiences would be greatly appreciated.

> > >

> > >

> > >

> >

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

This sounds a bit like what we did for difficult HTN EVALUATION at Indiana 1973-84. Remind them we perfected the saline-test then. Hope they do it right. If you see dr john Gill while there tell him hello. Ask your team if he is still around May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 11, 2012, at 18:32, maggiekat7 <ljurkovic@...> wrote:

Whle you are at it, ask your doctor for a referal to a clinical trial at NIH (go to their website and search the studies or , can you find a link and post it to Dr. L's protocol?) I went through the ridiculous search for a doc and after months of ridiculousness, found that NIH evaluates and treats endocrine issues. And I am currently at NIH getting evaluated. I have seen 3 docs today all of whom know more and are soooo different than all the ones I have seen at home. And it is such a breath of fresh air. My first day here and I would recommend it to anyone before they tear their hair out. It's a trip! I will know more about my body than I ever imagined by week's end and I will have all of my questions answered. They are still taking patients and all you pay for is your transportation there. They do AVS if necessary, as well as adrenal surgery as needed. Tomorrow, I have a Saline Supression test and a CT scan.

> > >

> > > Hi everyone, I'm new to the group but from what I have read on here

> > and elsewhere online, I feel a lot of my symptoms match what others on

> > here have experienced with hyperaldosteronism. I'm a 25yo female and

> > last year around February, I started to get really tired all the time. I

> > thought it was due to a bad flu but long after recovering I could never

> > seem to get enough sleep. Around the same time I started to get

> > migraines on an almost daily basis (didn't realize the killer headaches

> > were migraines at the time since I'd never had one). On top of it, my

> > usually sharp memory was completely gone and I was stuck with extreme

> > brain fog. With a lot of caffeine I made it to the end of the school

> > year and made an appt with my GP in June where on top of everything I

> > found I had extremely high bp, 196/92. Now, I had to have a physical for

> > my new job 8 months before where my bp was perfectly normal, 124/80. My

> > bp remained high and got started on metoprolol 25mg. At the time, I was

> > looking for typical issues that might cause all this such as anemia,

> > thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen

> > and blood tests came back normal except that one thing was slightly low,

> > and if memory serves me (which it may not :-/), it was my potassium. I

> > also saw an allergist thinking maybe it was my allergies causing it. He

> > was more concerned than my gp and put me on elavil for migraines (I take

> > 10mg) and singulair for asthma so I could stop advair. As soon as I

> > stopped advair I feel I slept much better, but still didn't feel well

> > rested or as energetic.

> > >

> > > I had my 6 month checkup and my bp was high again at 174/90. I asked

> > my doctor what could be causing it to go up and she just acted like it

> > is one of those things that can just happen. bs! I'm now upped to 50mg

> > meto, she tried me on hctz but that made me feel awful with extreme

> > muscle weakness and fatigue so I had to stop that. Now she has added

> > amlodipine 5mg (for about a week now) but I can still tell my bp is high

> > and the muscle weakness/tiredness has not gone away and I have dull

> > headaches almost every day. My doctor doesn't seem to think anything is

> > really wrong and has never tested me for anything other than a typical

> > blood test (back in June) and a sleep study (which showed I was an

> > inefficient sleeper, due to the advair i believe?)

> > >

> > > Now today I tried to get a referral from my dr to see an endo thinking

> > that would be my best starting point based from what I have read online

> > and family recommendation. Well the nurse calls me back asking why I

> > would want to see an endo. I explain that my bp is still high and my

> > migraines are returning and I am just all around fatigued and low

> > energy. She questions me saying "don't you mean a neurologist" since I

> > of course mentioned my migraines. I tell her no, I feel the migraines,

> > high bp and other symptoms are all related. So she said "oh, so you're

> > thinking thyroid issues." Well, no I'm not, but I just tell her I feel

> > it may be a gland issue. So she just kinda laughs and says "well, I'll

> > try to call, but they're going to tell me the same thing I told you"

> > which was that endos don't deal with high bp and migraines. Errr. I'm

> > hoping to hear back from my dr office soon to see if i can get in, but

> > how do I go about making my dr hear me? I know something is wrong with

> > me and no matter what she may think, otherwise healthy 25yos don't

> > develop extreme hypertension over an 8 month period without something

> > causing it. I guess if all else fails I'll call my allergist and see if

> > he will give me the referral since he is the only one who has seemed

> > concerned by my symptoms.

> > >

> > > Thank you for listening to my rant! Any advice from your own

> > experiences would be greatly appreciated.

> > >

> > >

> > >

> >

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Why is your doctor controlling your access to an endo? Are you in an HMO? Before you see the endo, be sure to study up on PA. You have to advocate for yourself and understand what's going on. You have to get the correct tests at the correct time. The endo I went to had virtually no clue about it. She gave me the meds I wanted (spironolactone). When my heartbeat got irregular, she called in Toprol. She never, ever listened to my heart. Low potassium is a hallmark of PA. HCTZ dropping potassium is another. You should have a copy of every single test you've had done for the last seven years. Don't guess about any of the results. Federal law requires that be furnished to you. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lisa_n87 Hi everyone, I'm new to the group but from what I have read on here and elsewhere online, I feel a lot of my symptoms match what others on here have experienced with hyperaldosteronism. I'm a 25yo female and last year around February, I started to get really tired all the time. I thought it was due to a bad flu but long after recovering I could never seem to get enough sleep. Around the same time I started to get migraines on an almost daily basis (didn't realize the killer headaches were migraines at the time since I'd never had one). On top of it, my usually sharp memory was completely gone and I was stuck with extreme brain fog. With a lot of caffeine I made it to the end of the school year and made an appt with my GP in June where on top of everything I found I had extremely high bp, 196/92. Now, I had to have a physical for my new job 8 months before where my bp was perfectly normal, 124/80. My bp remained high and got started on metoprolol 25mg. At the time, I was looking for typical issues that might cause all this such as anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen and blood tests came back normal except that one thing was slightly low, and if memory serves me (which it may not :-/), it was my potassium. I also saw an allergist thinking maybe it was my allergies causing it. He was more concerned than my gp and put me on elavil for migraines (I take 10mg) and singulair for asthma so I could stop advair. As soon as I stopped advair I feel I slept much better, but still didn't feel well rested or as energetic. I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor what could be causing it to go up and she just acted like it is one of those things that can just happen. bs! I'm now upped to 50mg meto, she tried me on hctz but that made me feel awful with extreme muscle weakness and fatigue so I had to stop that. Now she has added amlodipine 5mg (for about a week now) but I can still tell my bp is high and the muscle weakness/tiredness has not gone away and I have dull headaches almost every day. My doctor doesn't seem to think anything is really wrong and has never tested me for anything other than a typical blood test (back in June) and a sleep study (which showed I was an inefficient sleeper, due to the advair i believe?) Now today I tried to get a referral from my dr to see an endo thinking that would be my best starting point based from what I have read online and family recommendation. Well the nurse calls me back asking why I would want to see an endo. I explain that my bp is still high and my migraines are returning and I am just all around fatigued and low energy. She questions me saying " don't you mean a neurologist " since I of course mentioned my migraines. I tell her no, I feel the migraines, high bp and other symptoms are all related. So she said " oh, so you're thinking thyroid issues. " Well, no I'm not, but I just tell her I feel it may be a gland issue. So she just kinda laughs and says " well, I'll try to call, but they're going to tell me the same thing I told you " which was that endos don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr office soon to see if i can get in, but how do I go about making my dr hear me? I know s omething is wrong with me and no matter what she may think, otherwise healthy 25yos don't develop extreme hypertension over an 8 month period without something causing it. I guess if all else fails I'll call my allergist and see if he will give me the referral since he is the only one who has seemed concerned by my symptoms. Thank you for listening to my rant! Any advice from your own experiences would be greatly appreciated. .

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Here is the NIH info Maggie asked me to post:

Title: Clinical and Molecular Analysis of ACTH-Independent Steroid Hormone

Production in Adrenocortical Tissue

Number: 00-CH-0160

Full Reference at:

http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_00-CH-0160.html@NCT\

00005927

- 65 yo super ob., fastidious male - 12mm X 13mm rt. a.adnoma with

previous rt. flank pain. Treating with DASH. Stats w/o meds = BP 175/90 HR 59

BS 125. D/C Spironolactone 12/20/2011 due to adverse SX.

Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, Gynecomastia, MDD

and PTSD.

Meds: Duloxetine hcl 80 MG, Verapamil HCL 180mg, 81mg aspirin and Metformin

2000MG. Started washing Spironolactone 12/20/11 to prepare for AVS.

> > > >

> > > > Hi everyone, I'm new to the group but from what I have read on here

> > > and elsewhere online, I feel a lot of my symptoms match what others on

> > > here have experienced with hyperaldosteronism. I'm a 25yo female and

> > > last year around February, I started to get really tired all the time. I

> > > thought it was due to a bad flu but long after recovering I could never

> > > seem to get enough sleep. Around the same time I started to get

> > > migraines on an almost daily basis (didn't realize the killer headaches

> > > were migraines at the time since I'd never had one). On top of it, my

> > > usually sharp memory was completely gone and I was stuck with extreme

> > > brain fog. With a lot of caffeine I made it to the end of the school

> > > year and made an appt with my GP in June where on top of everything I

> > > found I had extremely high bp, 196/92. Now, I had to have a physical for

> > > my new job 8 months before where my bp was perfectly normal, 124/80. My

> > > bp remained high and got started on metoprolol 25mg. At the time, I was

> > > looking for typical issues that might cause all this such as anemia,

> > > thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen

> > > and blood tests came back normal except that one thing was slightly low,

> > > and if memory serves me (which it may not :-/), it was my potassium. I

> > > also saw an allergist thinking maybe it was my allergies causing it. He

> > > was more concerned than my gp and put me on elavil for migraines (I take

> > > 10mg) and singulair for asthma so I could stop advair. As soon as I

> > > stopped advair I feel I slept much better, but still didn't feel well

> > > rested or as energetic.

> > > >

> > > > I had my 6 month checkup and my bp was high again at 174/90. I asked

> > > my doctor what could be causing it to go up and she just acted like it

> > > is one of those things that can just happen. bs! I'm now upped to 50mg

> > > meto, she tried me on hctz but that made me feel awful with extreme

> > > muscle weakness and fatigue so I had to stop that. Now she has added

> > > amlodipine 5mg (for about a week now) but I can still tell my bp is high

> > > and the muscle weakness/tiredness has not gone away and I have dull

> > > headaches almost every day. My doctor doesn't seem to think anything is

> > > really wrong and has never tested me for anything other than a typical

> > > blood test (back in June) and a sleep study (which showed I was an

> > > inefficient sleeper, due to the advair i believe?)

> > > >

> > > > Now today I tried to get a referral from my dr to see an endo thinking

> > > that would be my best starting point based from what I have read online

> > > and family recommendation. Well the nurse calls me back asking why I

> > > would want to see an endo. I explain that my bp is still high and my

> > > migraines are returning and I am just all around fatigued and low

> > > energy. She questions me saying " don't you mean a neurologist " since I

> > > of course mentioned my migraines. I tell her no, I feel the migraines,

> > > high bp and other symptoms are all related. So she said " oh, so you're

> > > thinking thyroid issues. " Well, no I'm not, but I just tell her I feel

> > > it may be a gland issue. So she just kinda laughs and says " well, I'll

> > > try to call, but they're going to tell me the same thing I told you "

> > > which was that endos don't deal with high bp and migraines. Errr. I'm

> > > hoping to hear back from my dr office soon to see if i can get in, but

> > > how do I go about making my dr hear me? I know something is wrong with

> > > me and no matter what she may think, otherwise healthy 25yos don't

> > > develop extreme hypertension over an 8 month period without something

> > > causing it. I guess if all else fails I'll call my allergist and see if

> > > he will give me the referral since he is the only one who has seemed

> > > concerned by my symptoms.

> > > >

> > > > Thank you for listening to my rant! Any advice from your own

> > > experiences would be greatly appreciated.

> > > >

> > > >

> > > >

> > >

> >

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Will do. They are very interested and familiar with your research and are also

curious about this support network. Don't worry, I give you lots of credit.

Haven't heard of anyone with that normal of a name. All my doctors here are

Greek which is cool for me; haven't conversed in Greek for a while...since my

Dad died, I guess.

> > > > >

> > > > > Hi everyone, I'm new to the group but from what I have read on here

> > > > and elsewhere online, I feel a lot of my symptoms match what others on

> > > > here have experienced with hyperaldosteronism. I'm a 25yo female and

> > > > last year around February, I started to get really tired all the time. I

> > > > thought it was due to a bad flu but long after recovering I could never

> > > > seem to get enough sleep. Around the same time I started to get

> > > > migraines on an almost daily basis (didn't realize the killer headaches

> > > > were migraines at the time since I'd never had one). On top of it, my

> > > > usually sharp memory was completely gone and I was stuck with extreme

> > > > brain fog. With a lot of caffeine I made it to the end of the school

> > > > year and made an appt with my GP in June where on top of everything I

> > > > found I had extremely high bp, 196/92. Now, I had to have a physical for

> > > > my new job 8 months before where my bp was perfectly normal, 124/80. My

> > > > bp remained high and got started on metoprolol 25mg. At the time, I was

> > > > looking for typical issues that might cause all this such as anemia,

> > > > thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen

> > > > and blood tests came back normal except that one thing was slightly low,

> > > > and if memory serves me (which it may not :-/), it was my potassium. I

> > > > also saw an allergist thinking maybe it was my allergies causing it. He

> > > > was more concerned than my gp and put me on elavil for migraines (I take

> > > > 10mg) and singulair for asthma so I could stop advair. As soon as I

> > > > stopped advair I feel I slept much better, but still didn't feel well

> > > > rested or as energetic.

> > > > >

> > > > > I had my 6 month checkup and my bp was high again at 174/90. I asked

> > > > my doctor what could be causing it to go up and she just acted like it

> > > > is one of those things that can just happen. bs! I'm now upped to 50mg

> > > > meto, she tried me on hctz but that made me feel awful with extreme

> > > > muscle weakness and fatigue so I had to stop that. Now she has added

> > > > amlodipine 5mg (for about a week now) but I can still tell my bp is high

> > > > and the muscle weakness/tiredness has not gone away and I have dull

> > > > headaches almost every day. My doctor doesn't seem to think anything is

> > > > really wrong and has never tested me for anything other than a typical

> > > > blood test (back in June) and a sleep study (which showed I was an

> > > > inefficient sleeper, due to the advair i believe?)

> > > > >

> > > > > Now today I tried to get a referral from my dr to see an endo thinking

> > > > that would be my best starting point based from what I have read online

> > > > and family recommendation. Well the nurse calls me back asking why I

> > > > would want to see an endo. I explain that my bp is still high and my

> > > > migraines are returning and I am just all around fatigued and low

> > > > energy. She questions me saying " don't you mean a neurologist " since I

> > > > of course mentioned my migraines. I tell her no, I feel the migraines,

> > > > high bp and other symptoms are all related. So she said " oh, so you're

> > > > thinking thyroid issues. " Well, no I'm not, but I just tell her I feel

> > > > it may be a gland issue. So she just kinda laughs and says " well, I'll

> > > > try to call, but they're going to tell me the same thing I told you "

> > > > which was that endos don't deal with high bp and migraines. Errr. I'm

> > > > hoping to hear back from my dr office soon to see if i can get in, but

> > > > how do I go about making my dr hear me? I know something is wrong with

> > > > me and no matter what she may think, otherwise healthy 25yos don't

> > > > develop extreme hypertension over an 8 month period without something

> > > > causing it. I guess if all else fails I'll call my allergist and see if

> > > > he will give me the referral since he is the only one who has seemed

> > > > concerned by my symptoms.

> > > > >

> > > > > Thank you for listening to my rant! Any advice from your own

> > > > experiences would be greatly appreciated.

> > > > >

> > > > >

> > > > >

> > > >

> > >

> >

> >

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Don't do it to prove a point though if they aren't listening because the low potassium can certainly be harmful and alot more life altering than we seem to think. You already have the evidence of a low potassium so push that point with them (the criteria are clear in the HTN guidelines so everyone ignoring it is guilty). I advocate and understand the need to be tactful (because most of us can't go from doc to doc if we make one or the other mad), but for me, and I consider myself an "insider" I never wanted to be "that" patient, so I tried not to offend anyone when my gut knew all along - and so I learned the hard way for not being more vocal and I know I should have been much more of an advocate for myself. I trusted and I paid for it.

At this stage now, I know without any doubt that my day to day to misery back then was my low potassium. I fell into a trap of letting the docs kind of brush it off, so I got this mixed up message that mildly low wasn't THAT important (probably in many patients I took care of too AND myself and others actually didn't even have it drawn right to begin with) and part of me today feels that the system ignores many a fatigued and worn out patients potassium that's only "mildly" low - Conn's or not.

Once my K was corrected though I felt that I had gained my world back. I apparently have some other issues I am still working on, but the feeling I had with the low K is not one of them. So beg if you have to but get them to listen.

From: lisa_n87 <lisa_n87@...>Subject: Re: How do you get a doctor to listen?hyperaldosteronism Date: Sunday, March 11, 2012, 2:49 PM

I guess my fear with changing my diet further(already follow fairly close to a DASH diet) or taking a potassium supplement is that if it raises it high enough to be within normal range on a blood test I no longer have the evidence from testing I feel is needed to convince my doctor that something more is wrong with me. I plan on finding a different doctor so depending on how that goes that is when I will request renin/aldosterone testing. > > > From: lisa_n87 <lisa_n87@...>> Subject: How do you get a doctor to listen?> hyperaldosteronism > Date: Monday, March 5, 2012, 4:08 PM> > > > Â > > > > Hi everyone, I'm new to the group but from what I have read on here and elsewhere online, I feel a lot of my symptoms match what others on here have experienced with hyperaldosteronism. I'm a 25yo female and last year around February, I started to get really tired all the time. I thought it was due to a bad flu but long

after recovering I could never seem to get enough sleep. Around the same time I started to get migraines on an almost daily basis (didn't realize the killer headaches were migraines at the time since I'd never had one). On top of it, my usually sharp memory was completely gone and I was stuck with extreme brain fog. With a lot of caffeine I made it to the end of the school year and made an appt with my GP in June where on top of everything I found I had extremely high bp, 196/92. Now, I had to have a physical for my new job 8 months before where my bp was perfectly normal, 124/80. My bp remained high and got started on metoprolol 25mg. At> the time, I was looking for typical issues that might cause all this such as anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen and blood tests came back normal except that one thing was slightly low, and if memory serves me (which it may not :-/), it was my potassium. I also saw an

allergist thinking maybe it was my allergies causing it. He was more concerned than my gp and put me on elavil for migraines (I take 10mg) and singulair for asthma so I could stop advair. As soon as I stopped advair I feel I slept much better, but still didn't feel well rested or as energetic. > > I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor what could be causing it to go up and she just acted like it is one of those things that can just happen. bs! I'm now upped to 50mg meto, she tried me on hctz but that made me feel awful with extreme muscle weakness and fatigue so I had to stop that. Now she has added amlodipine 5mg (for about a week now) but I can still tell my bp is high and the muscle weakness/tiredness has not gone away and I have dull headaches almost every day. My doctor doesn't seem to think anything is really wrong and has never tested me for anything other than a typical blood test (back in

June) and a sleep study (which showed I was an inefficient sleeper, due to the advair i believe?) > > Now today I tried to get a referral from my dr to see an endo thinking that would be my best starting point based from what I have read online and family recommendation. Well the nurse calls me back asking why I would want to see an endo. I explain that my bp is still high and my migraines are returning and I am just all around fatigued and low energy. She questions me saying "don't you mean a neurologist" since I of course mentioned my migraines. I tell her no, I feel the migraines, high bp and other symptoms are all related. So she said "oh, so you're thinking thyroid issues." Well, no I'm not, but I just tell her I feel it may be a gland issue. So she just kinda laughs and says "well, I'll try to call, but they're going to tell me the same thing I told you" which was that endos don't deal with high bp and migraines. Errr. I'm hoping to

hear back from my dr office soon to see if i can get in, but how do I go about making my dr hear me? I know something> is wrong with me and no matter what she may think, otherwise healthy 25yos don't develop extreme hypertension over an 8 month period without something causing it. I guess if all else fails I'll call my allergist and see if he will give me the referral since he is the only one who has seemed concerned by my symptoms. > > Thank you for listening to my rant! Any advice from your own experiences would be greatly appreciated. > > >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

How low was it? Does low K cause fainting?

> >

> >

> > From: lisa_n87 <lisa_n87@>

> > Subject: How do you get a doctor to listen?

> > hyperaldosteronism

> > Date: Monday, March 5, 2012, 4:08 PM

> >

> >

> >

> >  

> >

> >

> >

> > Hi everyone, I'm new to the group but from what I have read on here and

elsewhere online, I feel a lot of my symptoms match what others on here have

experienced with hyperaldosteronism. I'm a 25yo female and last year around

February, I started to get really tired all the time. I thought it was due to a

bad flu but long after recovering I could never seem to get enough sleep. Around

the same time I started to get migraines on an almost daily basis (didn't

realize the killer headaches were migraines at the time since I'd never had

one). On top of it, my usually sharp memory was completely gone and I was stuck

with extreme brain fog. With a lot of caffeine I made it to the end of the

school year and made an appt with my GP in June where on top of everything I

found I had extremely high bp, 196/92. Now, I had to have a physical for my new

job 8 months before where my bp was perfectly normal, 124/80. My bp remained

high and got started on metoprolol 25mg.

> At

> > the time, I was looking for typical issues that might cause all this such as

anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen

and blood tests came back normal except that one thing was slightly low, and if

memory serves me (which it may not :-/), it was my potassium. I also saw an

allergist thinking maybe it was my allergies causing it. He was more concerned

than my gp and put me on elavil for migraines (I take 10mg) and singulair for

asthma so I could stop advair. As soon as I stopped advair I feel I slept much

better, but still didn't feel well rested or as energetic.

> >

> > I had my 6 month checkup and my bp was high again at 174/90. I asked my

doctor what could be causing it to go up and she just acted like it is one of

those things that can just happen. bs! I'm now upped to 50mg meto, she tried me

on hctz but that made me feel awful with extreme muscle weakness and fatigue so

I had to stop that. Now she has added amlodipine 5mg (for about a week now) but

I can still tell my bp is high and the muscle weakness/tiredness has not gone

away and I have dull headaches almost every day. My doctor doesn't seem to think

anything is really wrong and has never tested me for anything other than a

typical blood test (back in June) and a sleep study (which showed I was an

inefficient sleeper, due to the advair i believe?)

> >

> > Now today I tried to get a referral from my dr to see an endo thinking that

would be my best starting point based from what I have read online and family

recommendation. Well the nurse calls me back asking why I would want to see an

endo. I explain that my bp is still high and my migraines are returning and I am

just all around fatigued and low energy. She questions me saying " don't you mean

a neurologist " since I of course mentioned my migraines. I tell her no, I feel

the migraines, high bp and other symptoms are all related. So she said " oh, so

you're thinking thyroid issues. " Well, no I'm not, but I just tell her I feel it

may be a gland issue. So she just kinda laughs and says " well, I'll try to call,

but they're going to tell me the same thing I told you " which was that endos

don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr

office soon to see if i can get in, but how do I go about making my dr hear me?

I know

> something

> > is wrong with me and no matter what she may think, otherwise healthy 25yos

don't develop extreme hypertension over an 8 month period without something

causing it. I guess if all else fails I'll call my allergist and see if he will

give me the referral since he is the only one who has seemed concerned by my

symptoms.

> >

> > Thank you for listening to my rant! Any advice from your own experiences

would be greatly appreciated.

> >

> >

> >

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Low K can cause autonomic instability and fainting esp if due to diuretics. CE Grim MDOn Mar 11, 2012, at 10:10 PM, maggiekat7 wrote: How low was it? Does low K cause fainting? > > > > > > From: lisa_n87 <lisa_n87@> > > Subject: How do you get a doctor to listen? > > hyperaldosteronism > > Date: Monday, March 5, 2012, 4:08 PM > > > > > > > >  > > > > > > > > Hi everyone, I'm new to the group but from what I have read on here and elsewhere online, I feel a lot of my symptoms match what others on here have experienced with hyperaldosteronism. I'm a 25yo female and last year around February, I started to get really tired all the time. I thought it was due to a bad flu but long after recovering I could never seem to get enough sleep. Around the same time I started to get migraines on an almost daily basis (didn't realize the killer headaches were migraines at the time since I'd never had one). On top of it, my usually sharp memory was completely gone and I was stuck with extreme brain fog. With a lot of caffeine I made it to the end of the school year and made an appt with my GP in June where on top of everything I found I had extremely high bp, 196/92. Now, I had to have a physical for my new job 8 months before where my bp was perfectly normal, 124/80. My bp remained high and got started on metoprolol 25mg. > At > > the time, I was looking for typical issues that might cause all this such as anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen and blood tests came back normal except that one thing was slightly low, and if memory serves me (which it may not :-/), it was my potassium. I also saw an allergist thinking maybe it was my allergies causing it. He was more concerned than my gp and put me on elavil for migraines (I take 10mg) and singulair for asthma so I could stop advair. As soon as I stopped advair I feel I slept much better, but still didn't feel well rested or as energetic. > > > > I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor what could be causing it to go up and she just acted like it is one of those things that can just happen. bs! I'm now upped to 50mg meto, she tried me on hctz but that made me feel awful with extreme muscle weakness and fatigue so I had to stop that. Now she has added amlodipine 5mg (for about a week now) but I can still tell my bp is high and the muscle weakness/tiredness has not gone away and I have dull headaches almost every day. My doctor doesn't seem to think anything is really wrong and has never tested me for anything other than a typical blood test (back in June) and a sleep study (which showed I was an inefficient sleeper, due to the advair i believe?) > > > > Now today I tried to get a referral from my dr to see an endo thinking that would be my best starting point based from what I have read online and family recommendation. Well the nurse calls me back asking why I would want to see an endo. I explain that my bp is still high and my migraines are returning and I am just all around fatigued and low energy. She questions me saying "don't you mean a neurologist" since I of course mentioned my migraines. I tell her no, I feel the migraines, high bp and other symptoms are all related. So she said "oh, so you're thinking thyroid issues." Well, no I'm not, but I just tell her I feel it may be a gland issue. So she just kinda laughs and says "well, I'll try to call, but they're going to tell me the same thing I told you" which was that endos don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr office soon to see if i can get in, but how do I go about making my dr hear me? I know > something > > is wrong with me and no matter what she may think, otherwise healthy 25yos don't develop extreme hypertension over an 8 month period without something causing it. I guess if all else fails I'll call my allergist and see if he will give me the referral since he is the only one who has seemed concerned by my symptoms. > > > > Thank you for listening to my rant! Any advice from your own experiences would be greatly appreciated. > > > > > > >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

According to the nurse I talked to, my doctor was willing to give me the referral. The nurse kept asking me why I wanted one and I told her and she just said that they don't know what to put down on the referral sheet (I guess since no obvious diagnosis had been made). So the nurse made it sound like the endo turned down the referral. I'm part of an HMO but it is not very restrictive so I only needed the referral because the endo required one. I found an endo through my plan, but was only looking at tier 1 doctors and it was in a larger city, so that might be reason for the decline. I looked in tier 2 and found one much closer to home that sounds like she would be a better doctor anyway if I do try for a referral again. I'm not sure what the whole process is when it comes to doctors giving referrals. Mine made it sound like you need

definitive proof (labwork) that something is wrong before a serious referral can be made. Just seems silly to me that a doctor could find it perfectly normal for a 25yo to have to come in every 2 weeks to continue finding a blood pressure med that will work and still not think something is wrong. I guess I'll ask for the results on Friday when I go to my doctor again.From: Valarie <val@...>Subject: RE: How do you get a doctor to listen?hyperaldosteronism Date: Sunday, March 11, 2012, 9:05 PM

Why is your doctor controlling your access to an endo? Are you in an HMO? Before you see the endo, be sure to study up on PA. You have to advocate for yourself and understand what's going on. You have to get the correct tests at the correct time. The endo I went to had virtually no clue about it. She gave me the meds I wanted (spironolactone). When my heartbeat got irregular, she called in Toprol. She never, ever listened to my heart. Low potassium is a hallmark of PA. HCTZ dropping potassium is another.

You should have a copy of every single test you've had done for the last seven years. Don't guess about any of the results. Federal law requires that be furnished to you. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lisa_n87 Hi everyone, I'm new to the group but from what I have read on here and elsewhere online, I feel a lot of my symptoms

match what others on here have experienced with hyperaldosteronism. I'm a 25yo female and last year around February, I started to get really tired all the time. I thought it was due to a bad flu but long after recovering I could never seem to get enough sleep. Around the same time I started to get migraines on an almost daily basis (didn't realize the killer headaches were migraines at the time since I'd never had one). On top of it, my usually sharp memory was completely gone and I was stuck with extreme brain fog. With a lot of caffeine I made it to the end of the school year and made an appt with my GP in June where on top of everything I found I had extremely high bp, 196/92. Now, I had to have a physical for my new job 8 months before where my bp was perfectly normal, 124/80. My bp remained high and got started on metoprolol 25mg. At the time, I was looking for typical issues that might cause all this such as anemia, thyroid and maybe even reaction

to bcp. I stopped my ortho tri cyclen and blood tests came back normal except that one thing was slightly low, and if memory serves me (which it may not :-/), it was my potassium. I also saw an allergist thinking maybe it was my allergies causing it. He was more concerned than my gp and put me on elavil for migraines (I take 10mg) and singulair for asthma so I could stop advair. As soon as I stopped advair I feel I slept much better, but still didn't feel well rested or as energetic. I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor what could be causing it to go up and she just acted like it is one of those things that can just happen. bs! I'm now upped to 50mg meto, she tried me on hctz but that made me feel awful with extreme muscle weakness and fatigue so I had to stop that. Now she has added amlodipine 5mg (for about a week now) but I can still tell my bp is high and the muscle weakness/tiredness has not gone

away and I have dull headaches almost every day. My doctor doesn't seem to think anything is really wrong and has never tested me for anything other than a typical blood test (back in June) and a sleep study (which showed I was an inefficient sleeper, due to the advair i believe?) Now today I tried to get a referral from my dr to see an endo thinking that would be my best starting point based from what I have read online and family recommendation. Well the nurse calls me back asking why I would want to see an endo. I explain that my bp is still high and my migraines are returning and I am just all around fatigued and low energy. She questions me saying "don't you mean a neurologist" since I of course mentioned my migraines. I tell her no, I feel the migraines, high bp and other symptoms are all related. So she said "oh, so you're thinking thyroid issues." Well, no I'm not, but I just tell her I feel it may be a gland issue. So she just kinda

laughs and says "well, I'll try to call, but they're going to tell me the same thing I told you" which was that endos don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr office soon to see if i can get in, but how do I go about making my dr hear me? I know s omething is wrong with me and no matter what she may think, otherwise healthy 25yos don't develop extreme hypertension over an 8 month period without something causing it. I guess if all else fails I'll call my allergist and see if he will give me the referral since he is the only one who has seemed concerned by my symptoms. Thank you for listening to my rant! Any advice from your own experiences would be greatly appreciated. .

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

I don't have exact numbers since I lost the card, I just remember a note saying that it was low. My doctor never made any mention of it. I'll try to get the exact number on Friday. From: maggiekat7 <ljurkovic@...>Subject: Re: How do you get a doctor to listen?hyperaldosteronism Date: Sunday, March 11, 2012, 10:10 PM

How low was it? Does low K cause fainting?

> >

> >

> > From: lisa_n87 <lisa_n87@>

> > Subject: How do you get a doctor to listen?

> > hyperaldosteronism

> > Date: Monday, March 5, 2012, 4:08 PM

> >

> >

> >

> > ÂÂ

> >

> >

> >

> > Hi everyone, I'm new to the group but from what I have read on here and elsewhere online, I feel a lot of my symptoms match what others on here have experienced with hyperaldosteronism. I'm a 25yo female and last year around February, I started to get really tired all the time. I thought it was due to a bad flu but long after recovering I could never seem to get enough sleep. Around the same time I started to get migraines on an almost daily basis (didn't realize the killer headaches were migraines at the time since I'd never had one). On top of it, my usually sharp memory was completely gone and I was stuck with extreme brain fog. With a lot of caffeine I made it to the end of the school year and made an appt with my GP in June where on top of everything I found I had extremely high bp, 196/92. Now, I had to have a physical for my new job 8 months before where my bp was perfectly normal, 124/80. My bp remained high and got started on

metoprolol 25mg.

> At

> > the time, I was looking for typical issues that might cause all this such as anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen and blood tests came back normal except that one thing was slightly low, and if memory serves me (which it may not :-/), it was my potassium. I also saw an allergist thinking maybe it was my allergies causing it. He was more concerned than my gp and put me on elavil for migraines (I take 10mg) and singulair for asthma so I could stop advair. As soon as I stopped advair I feel I slept much better, but still didn't feel well rested or as energetic.

> >

> > I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor what could be causing it to go up and she just acted like it is one of those things that can just happen. bs! I'm now upped to 50mg meto, she tried me on hctz but that made me feel awful with extreme muscle weakness and fatigue so I had to stop that. Now she has added amlodipine 5mg (for about a week now) but I can still tell my bp is high and the muscle weakness/tiredness has not gone away and I have dull headaches almost every day. My doctor doesn't seem to think anything is really wrong and has never tested me for anything other than a typical blood test (back in June) and a sleep study (which showed I was an inefficient sleeper, due to the advair i believe?)

> >

> > Now today I tried to get a referral from my dr to see an endo thinking that would be my best starting point based from what I have read online and family recommendation. Well the nurse calls me back asking why I would want to see an endo. I explain that my bp is still high and my migraines are returning and I am just all around fatigued and low energy. She questions me saying "don't you mean a neurologist" since I of course mentioned my migraines. I tell her no, I feel the migraines, high bp and other symptoms are all related. So she said "oh, so you're thinking thyroid issues." Well, no I'm not, but I just tell her I feel it may be a gland issue. So she just kinda laughs and says "well, I'll try to call, but they're going to tell me the same thing I told you" which was that endos don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr office soon to see if i can get in, but how do I go about making my dr hear me? I

know

> something

> > is wrong with me and no matter what she may think, otherwise healthy 25yos don't develop extreme hypertension over an 8 month period without something causing it. I guess if all else fails I'll call my allergist and see if he will give me the referral since he is the only one who has seemed concerned by my symptoms.

> >

> > Thank you for listening to my rant! Any advice from your own experiences would be greatly appreciated.

> >

> >

> >

>

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

When I had HMO insurance that was exactly what I was up against - my

primary care doctor (who I eventually fired) had not been able to come

up with the labwork showing something was amiss (since he was too

clueless to know to have my ARR checked). So for years, I never got to

see a specialist.

I was a bit older than you - mid-30s to mid-40s - throughout my whole

ordeal, and went through the trying-new-meds routine every few weeks or

months for 9 years. And I was baffled by the fact that several people

with the title " doctor " could even think it was " normal " for a

young-ish woman, who was not overweight, who had never smoked, and who

didn't drink or eat junk food to even have hypertension in the first

place. I knew all along that it was secondary to something else.

At the end of my 9th year of dealing with this, I switched doctors yet

again. My new (and current, he's a keeper) doctor took one look at me

and within five minutes was on his computer ordering a referral to a

hypertension specialist. This was while I was still on an HMO - I was

lucky in that I was able to switch to a PPO the next month, which made

my whole diagnostic process a lot easier. But I still think it would

have worked out on the HMO - it all comes down to who your " gatekeeper "

is.

-msmith1928

Successful left laparoscopic adrenalectomy 10/13/11

>

Mine made it sound like you need definitive proof (labwork) that

something is wrong before a serious referral can be made. Just seems

silly to me that a doctor could find it perfectly  normal for a 25yo

to have to come in every 2 weeks to continue finding a blood pressure

med that will work and still not think something is wrong.

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

And I have come to decide that stress might AGGREVATE something, but doesn't usually cause it and yet everything is stress and unhealthy living because that's the easy answer.

Yeah yeah I realize long term stress isn't good for us, but....something so blatant as we had, given our young ages, our lack of risk factors (I too have never smoked ANYTHING) and at the time my BP started spiking I was playing in 3 basketball leagues, 3 nights a week and softball in season - in addition to tennis all the time when I could. And yet everyone always teased me about being out of shape because of my pressure - when back then I was 160 and 5'10" (I get a bit closer to 170 these days) .

Something funny - my grandma, who is 85 and still drives, lives alone, plays the piano in church every Sunday, calls me and is asking me if she HAS to take her simvastatin, that they just put her on, because her LDL was VERY mildly elevated (it wasn't even over 200 - which of course is high, but she's 85 and could still kick my butt if she wanted).

She's never been on it before, but started taking it because she was told to by her doc. BUT as someone, I forget who, was talking about KAISER (my dad BTW is a respiratory tech with KAISER too) I could totally see she was just a statistic - have to meet goals so even an 85 yo woman is getting put on a potentially dangerous med - without even asking her if SHE wanted to go on it. So I told her I probably would not have ever prescribed it to her and we talked about some diet. But I told her it's not likely to extend her life (not in a rude way of course, it's not like there;s any inheritance) and she was so happy that she even had the option to not take it.

just a number to help someone get their bonus.

From: msmith_1928 <janeray1940@...>Subject: Re: How do you get a doctor to listen?hyperaldosteronism Date: Monday, March 12, 2012, 9:20 PM

When I had HMO insurance that was exactly what I was up against - myprimary care doctor (who I eventually fired) had not been able to comeup with the labwork showing something was amiss (since he was tooclueless to know to have my ARR checked). So for years, I never got tosee a specialist.I was a bit older than you - mid-30s to mid-40s - throughout my wholeordeal, and went through the trying-new-meds routine every few weeks ormonths for 9 years. And I was baffled by the fact that several peoplewith the title "doctor" could even think it was "normal" for ayoung-ish woman, who was not overweight, who had never smoked, and whodidn't drink or eat junk food to even have hypertension in the firstplace. I knew all along that it was secondary to something else.At the end of my 9th year of dealing with this, I switched doctors yetagain. My new (and current, he's a keeper) doctor took one look at

meand within five minutes was on his computer ordering a referral to ahypertension specialist. This was while I was still on an HMO - I waslucky in that I was able to switch to a PPO the next month, which mademy whole diagnostic process a lot easier. But I still think it wouldhave worked out on the HMO - it all comes down to who your "gatekeeper"is.-msmith1928Successful left laparoscopic adrenalectomy 10/13/11>Mine made it sound like you need definitive proof (labwork) thatsomething is wrong before a serious referral can be made. Just seemssilly to me that a doctor could find it perfectly  normal for a 25yoto have to come in

every 2 weeks to continue finding a blood pressuremed that will work and still not think something is wrong.

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

Get all of your exact numbers for everything they measure and keep it in your files. CE Grim MDOn Mar 12, 2012, at 5:24 PM, Noffke wrote: I don't have exact numbers since I lost the card, I just remember a note saying that it was low. My doctor never made any mention of it. I'll try to get the exact number on Friday. From: maggiekat7 <ljurkovic@...>Subject: Re: How do you get a doctor to listen?hyperaldosteronism Date: Sunday, March 11, 2012, 10:10 PM How low was it? Does low K cause fainting? > > > > > > From: lisa_n87 <lisa_n87@> > > Subject: How do you get a doctor to listen? > > hyperaldosteronism > > Date: Monday, March 5, 2012, 4:08 PM > > > > > > > >  > > > > > > > > Hi everyone, I'm new to the group but from what I have read on here and elsewhere online, I feel a lot of my symptoms match what others on here have experienced with hyperaldosteronism. I'm a 25yo female and last year around February, I started to get really tired all the time. I thought it was due to a bad flu but long after recovering I could never seem to get enough sleep. Around the same time I started to get migraines on an almost daily basis (didn't realize the killer headaches were migraines at the time since I'd never had one). On top of it, my usually sharp memory was completely gone and I was stuck with extreme brain fog. With a lot of caffeine I made it to the end of the school year and made an appt with my GP in June where on top of everything I found I had extremely high bp, 196/92. Now, I had to have a physical for my new job 8 months before where my bp was perfectly normal, 124/80. My bp remained high and got started on metoprolol 25mg. > At > > the time, I was looking for typical issues that might cause all this such as anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen and blood tests came back normal except that one thing was slightly low, and if memory serves me (which it may not :-/), it was my potassium. I also saw an allergist thinking maybe it was my allergies causing it. He was more concerned than my gp and put me on elavil for migraines (I take 10mg) and singulair for asthma so I could stop advair. As soon as I stopped advair I feel I slept much better, but still didn't feel well rested or as energetic. > > > > I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor what could be causing it to go up and she just acted like it is one of those things that can just happen. bs! I'm now upped to 50mg meto, she tried me on hctz but that made me feel awful with extreme muscle weakness and fatigue so I had to stop that. Now she has added amlodipine 5mg (for about a week now) but I can still tell my bp is high and the muscle weakness/tiredness has not gone away and I have dull headaches almost every day. My doctor doesn't seem to think anything is really wrong and has never tested me for anything other than a typical blood test (back in June) and a sleep study (which showed I was an inefficient sleeper, due to the advair i believe?) > > > > Now today I tried to get a referral from my dr to see an endo thinking that would be my best starting point based from what I have read online and family recommendation. Well the nurse calls me back asking why I would want to see an endo. I explain that my bp is still high and my migraines are returning and I am just all around fatigued and low energy. She questions me saying "don't you mean a neurologist" since I of course mentioned my migraines. I tell her no, I feel the migraines, high bp and other symptoms are all related. So she said "oh, so you're thinking thyroid issues." Well, no I'm not, but I just tell her I feel it may be a gland issue. So she just kinda laughs and says "well, I'll try to call, but they're going to tell me the same thing I told you" which was that endos don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr office soon to see if i can get in, but how do I go about making my dr hear me? I know > something > > is wrong with me and no matter what she may think, otherwise healthy 25yos don't develop extreme hypertension over an 8 month period without something causing it. I guess if all else fails I'll call my allergist and see if he will give me the referral since he is the only one who has seemed concerned by my symptoms. > > > > Thank you for listening to my rant! Any advice from your own experiences would be greatly appreciated. > > > > > > >

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

I so not have enough of a story to make a referral either. We need your story and a thumbnail.CE Grim MDOn Mar 12, 2012, at 5:21 PM, Noffke wrote: According to the nurse I talked to, my doctor was willing to give me the referral. The nurse kept asking me why I wanted one and I told her and she just said that they don't know what to put down on the referral sheet (I guess since no obvious diagnosis had been made). So the nurse made it sound like the endo turned down the referral. I'm part of an HMO but it is not very restrictive so I only needed the referral because the endo required one. I found an endo through my plan, but was only looking at tier 1 doctors and it was in a larger city, so that might be reason for the decline. I looked in tier 2 and found one much closer to home that sounds like she would be a better doctor anyway if I do try for a referral again. I'm not sure what the whole process is when it comes to doctors giving referrals. Mine made it sound like you need definitive proof (labwork) that something is wrong before a serious referral can be made. Just seems silly to me that a doctor could find it perfectly normal for a 25yo to have to come in every 2 weeks to continue finding a blood pressure med that will work and still not think something is wrong. I guess I'll ask for the results on Friday when I go to my doctor again.From: Valarie <val@...>Subject: RE: How do you get a doctor to listen?hyperaldosteronism Date: Sunday, March 11, 2012, 9:05 PM Why is your doctor controlling your access to an endo? Are you in an HMO? Before you see the endo, be sure to study up on PA. You have to advocate for yourself and understand what's going on. You have to get the correct tests at the correct time. The endo I went to had virtually no clue about it. She gave me the meds I wanted (spironolactone). When my heartbeat got irregular, she called in Toprol. She never, ever listened to my heart. Low potassium is a hallmark of PA. HCTZ dropping potassium is another. You should have a copy of every single test you've had done for the last seven years. Don't guess about any of the results. Federal law requires that be furnished to you. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of lisa_n87 Hi everyone, I'm new to the group but from what I have read on here and elsewhere online, I feel a lot of my symptoms match what others on here have experienced with hyperaldosteronism. I'm a 25yo female and last year around February, I started to get really tired all the time. I thought it was due to a bad flu but long after recovering I could never seem to get enough sleep. Around the same time I started to get migraines on an almost daily basis (didn't realize the killer headaches were migraines at the time since I'd never had one). On top of it, my usually sharp memory was completely gone and I was stuck with extreme brain fog. With a lot of caffeine I made it to the end of the school year and made an appt with my GP in June where on top of everything I found I had extremely high bp, 196/92. Now, I had to have a physical for my new job 8 months before where my bp was perfectly normal, 124/80. My bp remained high and got started on metoprolol 25mg. At the time, I was looking for typical issues that might cause all this such as anemia, thyroid and maybe even reaction to bcp. I stopped my ortho tri cyclen and blood tests came back normal except that one thing was slightly low, and if memory serves me (which it may not :-/), it was my potassium. I also saw an allergist thinking maybe it was my allergies causing it. He was more concerned than my gp and put me on elavil for migraines (I take 10mg) and singulair for asthma so I could stop advair. As soon as I stopped advair I feel I slept much better, but still didn't feel well rested or as energetic. I had my 6 month checkup and my bp was high again at 174/90. I asked my doctor what could be causing it to go up and she just acted like it is one of those things that can just happen. bs! I'm now upped to 50mg meto, she tried me on hctz but that made me feel awful with extreme muscle weakness and fatigue so I had to stop that. Now she has added amlodipine 5mg (for about a week now) but I can still tell my bp is high and the muscle weakness/tiredness has not gone away and I have dull headaches almost every day. My doctor doesn't seem to think anything is really wrong and has never tested me for anything other than a typical blood test (back in June) and a sleep study (which showed I was an inefficient sleeper, due to the advair i believe?) Now today I tried to get a referral from my dr to see an endo thinking that would be my best starting point based from what I have read online and family recommendation. Well the nurse calls me back asking why I would want to see an endo. I explain that my bp is still high and my migraines are returning and I am just all around fatigued and low energy. She questions me saying "don't you mean a neurologist" since I of course mentioned my migraines. I tell her no, I feel the migraines, high bp and other symptoms are all related. So she said "oh, so you're thinking thyroid issues." Well, no I'm not, but I just tell her I feel it may be a gland issue. So she just kinda laughs and says "well, I'll try to call, but they're going to tell me the same thing I told you" which was that endos don't deal with high bp and migraines. Errr. I'm hoping to hear back from my dr office soon to see if i can get in, but how do I go about making my dr hear me? I know s omething is wrong with me and no matter what she may think, otherwise healthy 25yos don't develop extreme hypertension over an 8 month period without something causing it. I guess if all else fails I'll call my allergist and see if he will give me the referral since he is the only one who has seemed concerned by my symptoms. Thank you for listening to my rant! Any advice from your own experiences would be greatly appreciated. .

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

But u want to assure that she understands the risks of having a high lipid. Test. You might want to review the ATP 3 lipid treatment panel Recommendations. They always recommend adjusting diet first. Then retest. Dash is a good place to start. And what was her HDL. ONE OF THE BEST ways to make it to 85 is to have a high HDL. And what is her BP? I assume she wants to live as long as she can and in the best of health. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Mar 13, 2012, at 1:22, Bingham <jlkbbk2003@...> wrote:

And I have come to decide that stress might AGGREVATE something, but doesn't usually cause it and yet everything is stress and unhealthy living because that's the easy answer.

Yeah yeah I realize long term stress isn't good for us, but....something so blatant as we had, given our young ages, our lack of risk factors (I too have never smoked ANYTHING) and at the time my BP started spiking I was playing in 3 basketball leagues, 3 nights a week and softball in season - in addition to tennis all the time when I could. And yet everyone always teased me about being out of shape because of my pressure - when back then I was 160 and 5'10" (I get a bit closer to 170 these days) .

Something funny - my grandma, who is 85 and still drives, lives alone, plays the piano in church every Sunday, calls me and is asking me if she HAS to take her simvastatin, that they just put her on, because her LDL was VERY mildly elevated (it wasn't even over 200 - which of course is high, but she's 85 and could still kick my butt if she wanted).

She's never been on it before, but started taking it because she was told to by her doc. BUT as someone, I forget who, was talking about KAISER (my dad BTW is a respiratory tech with KAISER too) I could totally see she was just a statistic - have to meet goals so even an 85 yo woman is getting put on a potentially dangerous med - without even asking her if SHE wanted to go on it. So I told her I probably would not have ever prescribed it to her and we talked about some diet. But I told her it's not likely to extend her life (not in a rude way of course, it's not like there;s any inheritance) and she was so happy that she even had the option to not take it.

just a number to help someone get their bonus.

From: msmith_1928 <janeray1940@...>Subject: Re: How do you get a doctor to listen?hyperaldosteronism Date: Monday, March 12, 2012, 9:20 PM

When I had HMO insurance that was exactly what I was up against - myprimary care doctor (who I eventually fired) had not been able to comeup with the labwork showing something was amiss (since he was tooclueless to know to have my ARR checked). So for years, I never got tosee a specialist.I was a bit older than you - mid-30s to mid-40s - throughout my wholeordeal, and went through the trying-new-meds routine every few weeks ormonths for 9 years. And I was baffled by the fact that several peoplewith the title "doctor" could even think it was "normal" for ayoung-ish woman, who was not overweight, who had never smoked, and whodidn't drink or eat junk food to even have hypertension in the firstplace. I knew all along that it was secondary to something else.At the end of my 9th year of dealing with this, I switched doctors yetagain. My new (and current, he's a keeper) doctor took one look at

meand within five minutes was on his computer ordering a referral to ahypertension specialist. This was while I was still on an HMO - I waslucky in that I was able to switch to a PPO the next month, which mademy whole diagnostic process a lot easier. But I still think it wouldhave worked out on the HMO - it all comes down to who your "gatekeeper"is.-msmith1928Successful left laparoscopic adrenalectomy 10/13/11>Mine made it sound like you need definitive proof (labwork) thatsomething is wrong before a serious referral can be made. Just seemssilly to me that a doctor could find it perfectly  normal for a 25yoto have to come in

every 2 weeks to continue finding a blood pressuremed that will work and still not think something is wrong.

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

I had the same experience with my primary care doctor blowing off my low potassium (3.4) as being of no consequence, while prescribing a cocktail of BP meds to address my high blood pressure. I was told to eat more bananas. This went on until I had a CT scan for an unrelated GYN problem and an "incidental" finding of a left adrenal adenoma. Here is how I was diagnosed with PA: I Googled "adrenal adenoma, low potassium and high blood pressure" and there it was. I diagnosed myself. When I took a printout of information about PA (not having found this group yet) to my primary doctor, she was skeptical and said that PA was incredibly hard to diagnose and prove. Since I was lucky enough not to be in an HMO but rather a PPO, I fired that doctor on the spot. Took myself to an endo, who I

found thru the Yellow Pages (like I said, I hadn't found this group yet). He prescribed the necessary urine and renin tests, and diagnosed me. I've been on spiro (my choice, over surgery) and DASH for 5 years, K came right up on spiro and stayed there, BP is fine.So, in answer to your question, some doctors simply will not listen. They are either too busy, too arrogant or too negligent. If you feel you can educate your doctor, make a complete pest of yourself until you get the tests you need. Have no shame, this is YOUR life, and if you don't take control, nobody will. That's what I learned. If you are still not being heard and it's possible to change doctors, do it. But insist on interviewing the new doctor before you commit. Em

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
 Share
Go to topic listing
×
×
  • Create New...