Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 REad my evolution of PA paper and take to all of your Drs. CE Grim MDHi. I am new here. I wondered if there is anyone here from Maine with hyperaldosteronism. I have just been diagnosed with this and am waiting on an appointment with a surgeon to remove the adrenal gland tumor (or not). An appointment for a consult. Although I like the endocrinologist I am getting the feeling she pegged this but really hasn't treated anyone with this before. I will ask her next appointment. Treating me with spirolactone , now 75mg 2x day and amlodopine 5mg 1x day (was 100mg 2x but decreased due to potassium going too high)(took potassium sups for a while too but she stoped them but kept me on 200mg spiro but potassium went too high.Anyway I just wonderd if anyone from my state has this as well. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 How did you get diagnosed? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Lettie Maddan Hi. I am new here. I wondered if there is anyone here from Maine with hyperaldosteronism. I have just been diagnosed with this and am waiting on an appointment with a surgeon to remove the adrenal gland tumor (or not). An appointment for a consult. Although I like the endocrinologist I am getting the feeling she pegged this but really hasn't treated anyone with this before. I will ask her next appointment. Treating me with spirolactone , now 75mg 2x day and amlodopine 5mg 1x day (was 100mg 2x but decreased due to potassium going too high)(took potassium sups for a while too but she stoped them but kept me on 200mg spiro but potassium went too high.Anyway I just wonderd if anyone from my state has this as well. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 We all started here just like you...in few weeks you will know more than your doc! Heh! Max. 61M L adenoma by NP59 scan. High aldo not low renin. med combo #75={Spiro=100, Amlo=10, Indap=2.5, Ramip=5, Metf=1000, Prav=40, Feno=67, K.cl=120 mEq} | |I'm new here. I find it a bit confusing to navigate this site |but I'll give it a whirl. I have recently been diagnosed with |PA. After many years of headaches, uncontrolled HBP (tried |several meds and lifestyle changes), low potassium generally |feeling ill, heart palpatations etc I told my primary he |needed to find me a doc who could do something for me. He sent |me to an endocrinologist.She did some bloodwork,a 24 hr urine |test and more bloodwork, a cat scan and more bloodwork. There |is a small tumor on my left adrenal gland. She tells me " piece |of cake " (not those words but....)says tumor can be removed |and headaches etc will stop.Starts spiro, increases my |potassium,takes away other BP meds. Long story short suddenly |it is " complicated " and have to wait to see an oncology |surgeon-she said not because it is cancer but because it is |complicated and he is good at that. Their office tells me they |wont even call me until the end of March to possibly give me a |consulatation appointment. In meantime my potassium went too |high and meds changed again and continue to feel like crap. |HELP. I am in Maine and don't kno where to turn. Thank u | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 We all started here just like you...in few weeks you will know more than your doc! Heh! Max. 61M L adenoma by NP59 scan. High aldo not low renin. med combo #75={Spiro=100, Amlo=10, Indap=2.5, Ramip=5, Metf=1000, Prav=40, Feno=67, K.cl=120 mEq} | |I'm new here. I find it a bit confusing to navigate this site |but I'll give it a whirl. I have recently been diagnosed with |PA. After many years of headaches, uncontrolled HBP (tried |several meds and lifestyle changes), low potassium generally |feeling ill, heart palpatations etc I told my primary he |needed to find me a doc who could do something for me. He sent |me to an endocrinologist.She did some bloodwork,a 24 hr urine |test and more bloodwork, a cat scan and more bloodwork. There |is a small tumor on my left adrenal gland. She tells me " piece |of cake " (not those words but....)says tumor can be removed |and headaches etc will stop.Starts spiro, increases my |potassium,takes away other BP meds. Long story short suddenly |it is " complicated " and have to wait to see an oncology |surgeon-she said not because it is cancer but because it is |complicated and he is good at that. Their office tells me they |wont even call me until the end of March to possibly give me a |consulatation appointment. In meantime my potassium went too |high and meds changed again and continue to feel like crap. |HELP. I am in Maine and don't kno where to turn. Thank u | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 Ask your Drs if they will work with Dr Grim. > > > > I'm new here. I find it a bit confusing to navigate this site but I'll give it a whirl. I have recently been diagnosed with PA. After many years of headaches, uncontrolled HBP (tried several meds and lifestyle changes), low potassium generally feeling ill, heart palpatations etc I told my primary he needed to find me a doc who could do something for me. He sent me to an endocrinologist.She did some bloodwork,a 24 hr urine test and more bloodwork, a cat scan and more bloodwork. There is a small tumor on my left adrenal gland. She tells me " piece of cake " (not those words but....)says tumor can be removed and headaches etc will stop.Starts spiro, increases my potassium,takes away other BP meds. Long story short suddenly it is " complicated " and have to wait to see an oncology surgeon-she said not because it is cancer but because it is complicated and he is good at that. Their office tells me they wont even call me until the end of March to possibly give me a consulatation appointment. In meantime my potassium went too high and meds changed again and continue to feel like crap. HELP. I am in Maine and don't kno where to turn. Thank u > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 Ask your Drs if they will work with Dr Grim. > > > > I'm new here. I find it a bit confusing to navigate this site but I'll give it a whirl. I have recently been diagnosed with PA. After many years of headaches, uncontrolled HBP (tried several meds and lifestyle changes), low potassium generally feeling ill, heart palpatations etc I told my primary he needed to find me a doc who could do something for me. He sent me to an endocrinologist.She did some bloodwork,a 24 hr urine test and more bloodwork, a cat scan and more bloodwork. There is a small tumor on my left adrenal gland. She tells me " piece of cake " (not those words but....)says tumor can be removed and headaches etc will stop.Starts spiro, increases my potassium,takes away other BP meds. Long story short suddenly it is " complicated " and have to wait to see an oncology surgeon-she said not because it is cancer but because it is complicated and he is good at that. Their office tells me they wont even call me until the end of March to possibly give me a consulatation appointment. In meantime my potassium went too high and meds changed again and continue to feel like crap. HELP. I am in Maine and don't kno where to turn. Thank u > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2011 Report Share Posted February 7, 2011 I am available to work with you and one or more of them to get you right for a single upfront fee of $500 for one year.CE Grim MDAsk your Drs if they will work with Dr Grim. > >> > I'm new here. I find it a bit confusing to navigate this site but I'll give it a whirl. I have recently been diagnosed with PA. After many years of headaches, uncontrolled HBP (tried several meds and lifestyle changes), low potassium generally feeling ill, heart palpatations etc I told my primary he needed to find me a doc who could do something for me. He sent me to an endocrinologist.She did some bloodwork,a 24 hr urine test and more bloodwork, a cat scan and more bloodwork. There is a small tumor on my left adrenal gland. She tells me "piece of cake" (not those words but....)says tumor can be removed and headaches etc will stop.Starts spiro, increases my potassium,takes away other BP meds. Long story short suddenly it is "complicated"and have to wait to see an oncology surgeon-she said not because it is cancer but because it is complicated and he is good at that. Their office tells me they wont even call me until the end of March to possibly give me a consulatation appointment. In meantime my potassium went too high and meds changed again and continue to feel like crap. HELP. I am in Maine and don't kno where to turn. Thank u> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 I got diagnosed after I told my pcp that I couldn't live with the headaches anymore and was concerned that after everything I had tried my BP was still high and potassium low. He sent me to an endocrinologist who did some testing. Bloodwork, urine tests, cat scan etc. Found a small tumor on left adrenal but I also have high cortisol so endo is " puzzled " . All of this is very new to me (dx not the symptoms) so I don't know what to think. > > How did you get diagnosed? > > Val > > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Lettie Maddan > > > Hi. I am new here. I wondered if there is anyone here from Maine with > hyperaldosteronism. I have just been diagnosed with this and am waiting on > an appointment with a surgeon to remove the adrenal gland tumor (or not). An > appointment for a consult. Although I like the endocrinologist I am getting > the feeling she pegged this but really hasn't treated anyone with this > before. I will ask her next appointment. Treating me with spirolactone , now > 75mg 2x day and amlodopine 5mg 1x day (was 100mg 2x but decreased due to > potassium going too high)(took potassium sups for a while too but she stoped > them but kept me on 200mg spiro but potassium went too high.Anyway I just > wonderd if anyone from my state has this as well. Thank you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Give us your complete story so we can help.CE Grim MDI got diagnosed after I told my pcp that I couldn't live with the headaches anymore and was concerned that after everything I had tried my BP was still high and potassium low. He sent me to an endocrinologist who did some testing. Bloodwork, urine tests, cat scan etc. Found a small tumor on left adrenal but I also have high cortisol so endo is "puzzled". All of this is very new to me (dx not the symptoms) so I don't know what to think.>> How did you get diagnosed?> > Val> > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of Lettie Maddan> > > Hi. I am new here. I wondered if there is anyone here from Maine with> hyperaldosteronism. I have just been diagnosed with this and am waiting on> an appointment with a surgeon to remove the adrenal gland tumor (or not). An> appointment for a consult. Although I like the endocrinologist I am getting> the feeling she pegged this but really hasn't treated anyone with this> before. I will ask her next appointment. Treating me with spirolactone , now> 75mg 2x day and amlodopine 5mg 1x day (was 100mg 2x but decreased due to> potassium going too high)(took potassium sups for a while too but she stoped> them but kept me on 200mg spiro but potassium went too high.Anyway I just> wonderd if anyone from my state has this as well. Thank you.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 All I can tell you is that my BP was pretty consistant around 156/98 or higher. My doc had tried Lisonopril, then Hyzaar(sp), then amlodopine because he said the Hyzaar(sp)was making my potassium low. My potassium stayed around 2.0 even when taking potassium sups. I told him I was concerned with kidneys, worried about having a stroke,I felt like crap and the headaches were too much. The endo put me on 2 tabs of pottasium 2x day and started spirolactone at 25 mg 2x day and gradually increased doing blood work along the way. The 24 hr urine test shows this, Potassium 2.6 (range 3.6-5.0mmo/L)Aldosterone,UR 42.0 A(range2.0-20mcg/24h) Cortisol 79.0 A(range 3.5-45mcg/24h) Cortisone, Free 168.0 A (range17-129mcg/24h) Renin activity <0.6(range See Note) is what that says. I am trying to understand it. The overnight dexamethasone suppression test a month later says cortisol 7.90 and then says am cortisol 4.30 - 22.40 mcg/dl and pm cortisol 3.09 - 16.66. Normal level is <1.8mcg/dl It is all confusing to me. The ct scan report says " in the left adrenal gland is a well maginated 1.4x1.3cm nodule (pretty little). Since this time my spiro has been increased to 200mg day then down to 75 mg day because potassium too high. > > > > I'm new here. I find it a bit confusing to navigate this site but I'll give it a whirl. I have recently been diagnosed with PA. After many years of headaches, uncontrolled HBP (tried several meds and lifestyle changes), low potassium generally feeling ill, heart palpatations etc I told my primary he needed to find me a doc who could do something for me. He sent me to an endocrinologist.She did some bloodwork,a 24 hr urine test and more bloodwork, a cat scan and more bloodwork. There is a small tumor on my left adrenal gland. She tells me " piece of cake " (not those words but....)says tumor can be removed and headaches etc will stop.Starts spiro, increases my potassium,takes away other BP meds. Long story short suddenly it is " complicated " and have to wait to see an oncology surgeon-she said not because it is cancer but because it is complicated and he is good at that. Their office tells me they wont even call me until the end of March to possibly give me a consulatation appointment. In meantime my potassium went too high and meds changed again and continue to feel like crap. HELP. I am in Maine and don't kno where to turn. Thank u > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 In comarison to everyone else here the numbers sound pretty minor and the tumor very small. Unless I am just not understanding these numbers right. > > > > > > I'm new here. I find it a bit confusing to navigate this site but I'll give it a whirl. I have recently been diagnosed with PA. After many years of headaches, uncontrolled HBP (tried several meds and lifestyle changes), low potassium generally feeling ill, heart palpatations etc I told my primary he needed to find me a doc who could do something for me. He sent me to an endocrinologist.She did some bloodwork,a 24 hr urine test and more bloodwork, a cat scan and more bloodwork. There is a small tumor on my left adrenal gland. She tells me " piece of cake " (not those words but....)says tumor can be removed and headaches etc will stop.Starts spiro, increases my potassium,takes away other BP meds. Long story short suddenly it is " complicated " and have to wait to see an oncology surgeon-she said not because it is cancer but because it is complicated and he is good at that. Their office tells me they wont even call me until the end of March to possibly give me a consulatation appointment. In meantime my potassium went too high and meds changed again and continue to feel like crap. HELP. I am in Maine and don't kno where to turn. Thank u > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Because you were taking Spiro you numbers probably are not right. > > > > > > > > I'm new here. I find it a bit confusing to navigate this site but I'll give it a whirl. I have recently been diagnosed with PA. After many years of headaches, uncontrolled HBP (tried several meds and lifestyle changes), low potassium generally feeling ill, heart palpatations etc I told my primary he needed to find me a doc who could do something for me. He sent me to an endocrinologist.She did some bloodwork,a 24 hr urine test and more bloodwork, a cat scan and more bloodwork. There is a small tumor on my left adrenal gland. She tells me " piece of cake " (not those words but....)says tumor can be removed and headaches etc will stop.Starts spiro, increases my potassium,takes away other BP meds. Long story short suddenly it is " complicated " and have to wait to see an oncology surgeon-she said not because it is cancer but because it is complicated and he is good at that. Their office tells me they wont even call me until the end of March to possibly give me a consulatation appointment. In meantime my potassium went too high and meds changed again and continue to feel like crap. HELP. I am in Maine and don't kno where to turn. Thank u > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Hyzaar rarely makes K low unless you have PA.Holy SXXX 2.0 will kill many.All I can tell you is that my BP was pretty consistant around 156/98 or higher. My doc had tried Lisonopril, then Hyzaar(sp), then amlodopine because he said the Hyzaar(sp)was making my potassium low. My potassium stayed around 2.0 even when taking potassium sups. I told him I was concerned with kidneys, worried about having a stroke,I felt like crap and the headaches were too much. The endo put me on 2 tabs of pottasium 2x day and started spirolactone at 25 mg 2x day and gradually increased doing blood work along the way. The 24 hr urine test shows this, Potassium 2.6 (range 3.6-5.0mmo/L)Aldosterone,UR 42.0 A(range2.0-20mcg/24h) Cortisol 79.0 A(range 3.5-45mcg/24h) Cortisone, Free 168.0 A (range17-129mcg/24h) Renin activity <0.6(range See Note) is what that says. I am trying to understand it. The overnight dexamethasone suppression test a month later says cortisol 7.90 and then says am cortisol 4.30 - 22.40 mcg/dl and pm cortisol 3.09 - 16.66. Normal level is <1.8mcg/dl It is all confusing to me. The ct scan report says "in the left adrenal gland is a well maginated 1.4x1.3cm nodule (pretty little). Since this time my spiro has been increased to 200mg day then down to 75 mg day because potassium too high. > >> > I'm new here. I find it a bit confusing to navigate this site but I'll give it a whirl. I have recently been diagnosed with PA. After many years of headaches, uncontrolled HBP (tried several meds and lifestyle changes), low potassium generally feeling ill, heart palpatations etc I told my primary he needed to find me a doc who could do something for me. He sent me to an endocrinologist.She did some bloodwork,a 24 hr urine test and more bloodwork, a cat scan and more bloodwork. There is a small tumor on my left adrenal gland. She tells me "piece of cake" (not those words but....)says tumor can be removed and headaches etc will stop.Starts spiro, increases my potassium,takes away other BP meds. Long story short suddenly it is "complicated"and have to wait to see an oncology surgeon-she said not because it is cancer but because it is complicated and he is good at that. Their office tells me they wont even call me until the end of March to possibly give me a consulatation appointment. In meantime my potassium went too high and meds changed again and continue to feel like crap. HELP. I am in Maine and don't kno where to turn. Thank u> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 if you note in my review article on the evolution of PA the three drugs you mention do not work in PA.Take my article to all the Drs who missed you over the last 10 years so they will not miss all the others they have.You clearly have PA and need to know you BP and K response to spiro in more detail. Are they drawing K correctly?CE Grim MDCE Grim MDIn comarison to everyone else here the numbers sound pretty minor and the tumor very small. Unless I am just not understanding these numbers right.> > >> > > I'm new here. I find it a bit confusing to navigate this site but I'll give it a whirl. I have recently been diagnosed with PA. After many years of headaches, uncontrolled HBP (tried several meds and lifestyle changes), low potassium generally feeling ill, heart palpatations etc I told my primary he needed to find me a doc who could do something for me. He sent me to an endocrinologist.She did some bloodwork,a 24 hr urine test and more bloodwork, a cat scan and more bloodwork. There is a small tumor on my left adrenal gland. She tells me "piece of cake" (not those words but....)says tumor can be removed and headaches etc will stop.Starts spiro, increases my potassium,takes away other BP meds. Long story short suddenly it is "complicated"and have to wait to see an oncology surgeon-she said not because it is cancer but because it is complicated and he is good at that. Their office tells me they wont even call me until the end of March to possibly give me a consulatation appointment. In meantime my potassium went too high and meds changed again and continue to feel like crap. HELP. I am in Maine and don't kno where to turn. Thank u> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 I felt like crap. I'm slowly feeling somewhat better but doc changed my spiro dose and took me off K because it went up to 6.2. After she changed meds she had my blood done again and it was 4.8 last week and she said it was good. > > > > > > > > I'm new here. I find it a bit confusing to navigate this site > > but I'll give it a whirl. I have recently been diagnosed with PA. > > After many years of headaches, uncontrolled HBP (tried several meds > > and lifestyle changes), low potassium generally feeling ill, heart > > palpatations etc I told my primary he needed to find me a doc who > > could do something for me. He sent me to an endocrinologist.She did > > some bloodwork,a 24 hr urine test and more bloodwork, a cat scan and > > more bloodwork. There is a small tumor on my left adrenal gland. She > > tells me " piece of cake " (not those words but....)says tumor can be > > removed and headaches etc will stop.Starts spiro, increases my > > potassium,takes away other BP meds. Long story short suddenly it is > > " complicated " and have to wait to see an oncology surgeon-she said > > not because it is cancer but because it is complicated and he is > > good at that. Their office tells me they wont even call me until the > > end of March to possibly give me a consulatation appointment. In > > meantime my potassium went too high and meds changed again and > > continue to feel like crap. HELP. I am in Maine and don't kno where > > to turn. Thank u > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 even on spiro these numbers shout PA, PA, PA.CE Grim MDBecause you were taking Spiro you numbers probably are not right. > > > >> > > > I'm new here. I find it a bit confusing to navigate this site but I'll give it a whirl. I have recently been diagnosed with PA. After many years of headaches, uncontrolled HBP (tried several meds and lifestyle changes), low potassium generally feeling ill, heart palpatations etc I told my primary he needed to find me a doc who could do something for me. He sent me to an endocrinologist.She did some bloodwork,a 24 hr urine test and more bloodwork, a cat scan and more bloodwork. There is a small tumor on my left adrenal gland. She tells me "piece of cake" (not those words but....)says tumor can be removed and headaches etc will stop.Starts spiro, increases my potassium,takes away other BP meds. Long story short suddenly it is "complicated"and have to wait to see an oncology surgeon-she said not because it is cancer but because it is complicated and he is good at that. Their office tells me they wont even call me until the end of March to possibly give me a consulatation appointment. In meantime my potassium went too high and meds changed again and continue to feel like crap. HELP. I am in Maine and don't kno where to turn. Thank u> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 How are they drawing the blood? Fist clenching, no no. CE Grim MDI felt like crap. I'm slowly feeling somewhat better but doc changed my spiro dose and took me off K because it went up to 6.2. After she changed meds she had my blood done again and it was 4.8 last week and she said it was good. > > > >> > > > I'm new here. I find it a bit confusing to navigate this site > > but I'll give it a whirl. I have recently been diagnosed with PA. > > After many years of headaches, uncontrolled HBP (tried several meds > > and lifestyle changes), low potassium generally feeling ill, heart > > palpatations etc I told my primary he needed to find me a doc who > > could do something for me. He sent me to an endocrinologist.She did > > some bloodwork,a 24 hr urine test and more bloodwork, a cat scan and > > more bloodwork. There is a small tumor on my left adrenal gland. She > > tells me "piece of cake" (not those words but....)says tumor can be > > removed and headaches etc will stop.Starts spiro, increases my > > potassium,takes away other BP meds. Long story short suddenly it is > > "complicated"and have to wait to see an oncology surgeon-she said > > not because it is cancer but because it is complicated and he is > > good at that. Their office tells me they wont even call me until the > > end of March to possibly give me a consulatation appointment. In > > meantime my potassium went too high and meds changed again and > > continue to feel like crap. HELP. I am in Maine and don't kno where > > to turn. Thank u> > > >> > >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Just drawing blood from my arm. Stupid question....where do I find your article to read? > > > > > > > > > > > > I'm new here. I find it a bit confusing to navigate this site > > > > but I'll give it a whirl. I have recently been diagnosed with PA. > > > > After many years of headaches, uncontrolled HBP (tried several > > meds > > > > and lifestyle changes), low potassium generally feeling ill, heart > > > > palpatations etc I told my primary he needed to find me a doc who > > > > could do something for me. He sent me to an endocrinologist.She > > did > > > > some bloodwork,a 24 hr urine test and more bloodwork, a cat scan > > and > > > > more bloodwork. There is a small tumor on my left adrenal gland. > > She > > > > tells me " piece of cake " (not those words but....)says tumor can > > be > > > > removed and headaches etc will stop.Starts spiro, increases my > > > > potassium,takes away other BP meds. Long story short suddenly it > > is > > > > " complicated " and have to wait to see an oncology surgeon-she said > > > > not because it is cancer but because it is complicated and he is > > > > good at that. Their office tells me they wont even call me until > > the > > > > end of March to possibly give me a consulatation appointment. In > > > > meantime my potassium went too high and meds changed again and > > > > continue to feel like crap. HELP. I am in Maine and don't kno > > where > > > > to turn. Thank u > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Did you not get this welcome?Did you not read it?I have put a lot of work into this guide on how to get up to speed.I am available to help train your health care team in how to do it right and get you back to good health ASAP.My fee is $500 for one year or unlimted access to my expertise for you and your team. Suspect you have spent this much already. 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 a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963. I trained with Dr. Jerome W. Conn in Endocrinology and Metabolism 1969-70 and 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 (sodium(Na) chloride (Cl) or NaCL) and potassium (K) 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 into a doctor we will make you into a pretty good BP doctor-a skill that you will have for life and you can transfer to the rest of your family who will likely have high blood pressure eventually-if they live long enough. 1. A brief history of Primary Aldosteronsim and why it is so common today in drug resistant high blood pressure. 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). READING THIS HOW WILL SAVE YOU TIME AND MONEY. By taking it to your health care team they will not treat their other patients as badly as they may have treated you. 2. Read about 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. The first patient is described in my review article.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 " First send us your story in an email and they we may have questions and suggestions before you upload it to our files. 3. DASH to lower your BP. Your and my tax dollars funded the most important series of studies on how to improve blood pressure, blood sugar, blood lipids and make your heart smaller: The DASH 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, (http://www.amazon.com/DASH-Diet-Hypertension--/dp/0743202953) read it and use it: ~$8 in paperback at your local bookstore or online. If they don’t have it ask them to order it for you. You can also get the hardback larger print version as well at Amazon. 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. See http://en.wikipedia.org/wiki/DASH_diet for an overview and more details. In the book 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. Measure your BP every day and post to us. 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 (20/10 mm Hg or more) and let your Dr. know you are doing this. And/Or go to (but costs money monthly) DASH Diet for Health Program (http://www.dashforhealth.com/pages/public/tour.php)The DASH Diet for Health Program is designed to help you improve your eating and exercise habits. Twice each week they 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 the website, they create a web page specially for you where you can track progress in areas such as your weight, blood pressure, and exercise. I strongly recommend you get this book by .... and read it. 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 that your health care team do BP the AHA way. 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 (FHx or FH) so we can review with you to help diagnosis (Dx) and treat (Rx) 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. 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. DX: Also see our file from the Endocrine Society Guidelines on PA. 7. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day. 1. Eat a regular to high salt diet for 2 weeks.2. No BP meds in last 4-12 weeks depending on meds.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 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. 8. Become a participant in our PA Registry and contribute to our large database on PA: 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 6/12/09 for me would be Grim090612. This ever increasing number will allow us and you to sort your multiple entries into a dated order. 9. Learn the language: If you are new to medical lingo then download the acroyms from http://health.groups.yahoo.com/group/bloodpressureline/message/2918610. 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.htm11. 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.12. 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 4th addition. I coauthored the chapter on BP measurement. You can also get this for about $6 from Amazon.com. 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. If you don't like it take it to your health care team so they will know what every medical student today should know.13. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for. We have had this site for 10 years and over 30,000 emails are searchable. This is the largest collection of communications about Conn's Syndrome in the World. 14. 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@....15: Abbreviations of common use in aldo speak include: AME apparent mineralocorticoid excess AVS adrenal vein sampling BB beta blockers CCB calcium channel blockers Dx diagnosis FHx family history GRE glucocorticoid remedial aldosteronism MCB mineralocorticoid blocker also called AB aldosterone blocker. MHx medical history Rx treatment SHx social history May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACC, FAHA Council for High Blood Pressure Research. Board Certified in Internal Medicine, Geriatrics, and High Blood Pressure by the American Society of Hypertension. Retired Faculty/Professor of Medicine (U of MO, Indiana, UCLA/DREW, Medical College of Wisconsin in Nephrology, Endocrinology, Cardiology, and Epidemiology. Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. Just drawing blood from my arm. Stupid question....where do I find your article to read?> > > > > >> > > > > > I'm new here. I find it a bit confusing to navigate this site> > > > but I'll give it a whirl. I have recently been diagnosed with PA.> > > > After many years of headaches, uncontrolled HBP (tried several > > meds> > > > and lifestyle changes), low potassium generally feeling ill, heart> > > > palpatations etc I told my primary he needed to find me a doc who> > > > could do something for me. He sent me to an endocrinologist.She > > did> > > > some bloodwork,a 24 hr urine test and more bloodwork, a cat scan > > and> > > > more bloodwork. There is a small tumor on my left adrenal gland. > > She> > > > tells me "piece of cake" (not those words but....)says tumor can > > be> > > > removed and headaches etc will stop.Starts spiro, increases my> > > > potassium,takes away other BP meds. Long story short suddenly it > > is> > > > "complicated"and have to wait to see an oncology surgeon-she said> > > > not because it is cancer but because it is complicated and he is> > > > good at that. Their office tells me they wont even call me until > > the> > > > end of March to possibly give me a consulatation appointment. In> > > > meantime my potassium went too high and meds changed again and> > > > continue to feel like crap. HELP. I am in Maine and don't kno > > where> > > > to turn. Thank u> > > > > >> > > > >> > > >> > > >> > > >> > >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Were these tests done on or off spiro? So, how is your BP doing on 75 mg spiro? Are you DASHing? BTW, " 2 tabs of potassium " doesn't tell us much. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Lettie Maddan In comarison to everyone else here the numbers sound pretty minor and the tumor very small. Unless I am just not understanding these numbers right. > > > All I can tell you is that my BP was pretty consistant around 156/98 or higher. My doc had tried Lisonopril, then Hyzaar(sp), then amlodopine because he said the Hyzaar(sp)was making my potassium low. My potassium stayed around 2.0 even when taking potassium sups. I told him I was concerned with kidneys, worried about having a stroke,I felt like crap and the headaches were too much. The endo put me on 2 tabs of pottasium 2x day and started spirolactone at 25 mg 2x day and gradually increased doing blood work along the way. The 24 hr urine test shows this, Potassium 2.6 (range 3.6-5.0mmo/L)Aldosterone,UR 42.0 A(range2.0-20mcg/24h) Cortisol 79.0 A(range 3.5-45mcg/24h) Cortisone, Free 168.0 A (range17-129mcg/24h) Renin activity <0.6(range See Note) is what that says. I am trying to understand it. The overnight dexamethasone suppression test a month later says cortisol 7.90 and then says am cortisol 4.30 - 22.40 mcg/dl and pm cortisol 3.09 - 16.66. Normal level is <1. 8mcg/dl It is all confusing to me. The ct scan report says " in the left adrenal gland is a well maginated 1.4x1.3cm nodule (pretty little). Since this time my spiro has been increased to 200mg day then down to 75 mg day because potassium too high. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Lettie, not a stupid question. If they use a tourniquet and you clench your fist, your K reading will be erroneously high. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Lettie Maddan Just drawing blood from my arm. Stupid question....where do I find your article to read? > > How are they drawing the blood? Fist clenching, no no. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2011 Report Share Posted February 9, 2011 I did get it as I look in my email today. There has been a lot going on for me so I apologize I did not read it. I will and thank you > > > > > > > > > > > > > > > > I'm new here. I find it a bit confusing to navigate this > > site > > > > > > but I'll give it a whirl. I have recently been diagnosed > > with PA. > > > > > > After many years of headaches, uncontrolled HBP (tried several > > > > meds > > > > > > and lifestyle changes), low potassium generally feeling ill, > > heart > > > > > > palpatations etc I told my primary he needed to find me a > > doc who > > > > > > could do something for me. He sent me to an > > endocrinologist.She > > > > did > > > > > > some bloodwork,a 24 hr urine test and more bloodwork, a cat > > scan > > > > and > > > > > > more bloodwork. There is a small tumor on my left adrenal > > gland. > > > > She > > > > > > tells me " piece of cake " (not those words but....)says tumor > > can > > > > be > > > > > > removed and headaches etc will stop.Starts spiro, increases my > > > > > > potassium,takes away other BP meds. Long story short > > suddenly it > > > > is > > > > > > " complicated " and have to wait to see an oncology surgeon-she > > said > > > > > > not because it is cancer but because it is complicated and > > he is > > > > > > good at that. Their office tells me they wont even call me > > until > > > > the > > > > > > end of March to possibly give me a consulatation > > appointment. In > > > > > > meantime my potassium went too high and meds changed again and > > > > > > continue to feel like crap. HELP. I am in Maine and don't kno > > > > where > > > > > > to turn. Thank u > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2011 Report Share Posted February 9, 2011 Val, No I didn't mean the tourniquet question was stupid I meant stupid question asking about where I could find the article. Sorry for the misunderstanding. > > > > How are they drawing the blood? Fist clenching, no no. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2011 Report Share Posted February 9, 2011 You can find it here. http://f1.grp.yahoofs.com/v1/8KtSTYSOTAxAmxOVjm6WDRUcg8GHr2oCoLs_t_7UZHB0gTjb07B\ 66l8k0oIQZB-KljTzR5hjvN3P0yUROIL_g8reQ776Jbqkww/Evolution_of_PA-Grim.pdf. Maybe Dr Grim can add link to intro. > > > > > > How are they drawing the blood? Fist clenching, no no. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2011 Report Share Posted February 9, 2011 You can find it here. http://f1.grp.yahoofs.com/v1/8KtSTYSOTAxAmxOVjm6WDRUcg8GHr2oCoLs_t_7UZHB0gTjb07B\ 66l8k0oIQZB-KljTzR5hjvN3P0yUROIL_g8reQ776Jbqkww/Evolution_of_PA-Grim.pdf. Maybe Dr Grim can add link to intro. > > > > > > How are they drawing the blood? Fist clenching, no no. > > > Quote Link to comment Share on other sites More sharing options...
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