Guest guest Posted April 25, 2012 Report Share Posted April 25, 2012 The blood test to see if you might have a clot is called a D-dimer test. It isn't foolprof. At least 5% of the time it will show you don't have a clot but you do have one. This should be stated on the lab sheet. I would ask to see what is on the lab sheet. > > > > > > > > > > > > > > > Hi, I'm . Just found this site recently, and am hoping it > > > > > becomes helpful in this maze of trying to figure the craziness out! > > > > > > > > > > So, after years of unexplained extremely high bp despite my BMI being > > > > > great, exercise, and medications for bp and other strange symptoms for > > > > > at least 5 years (maybe 10), I was recently diagnosed as having primary > > > > > hyperaldosteronism by a local Endocrinologist. > > > > > > > > > > I am 33 years old and have had bouts of very low potassium (around 2.0 > > > > > to 4.3 fluctuating frequently) that has landed me in the ER at least 3 > > > > > times in the past year and a half and which delayed a necessary surgery > > > > > twice (until they could get my levels stable enough for surgery). > > > > > Despite how many times my potassium was low/has been low, my primary > > > > > care doc, GYN who had to delay the surgery twice, and ER docs merely > > > > > treated me by doing iv and/or oral potassium then re-testing a week or > > > > > so later, adding potassium pills as needed, and changing bp meds around. > > > > > I had extreme HELLP syndrome with both pregnancies, and delivered both > > > > > of my children at 29 weeks gestation (11 weeks early). Some antibody > > > > > testing my OB did (and sent to labs in California) after my 10 yr old > > > > > daughter's early birth showed I had a blood clotting disorder > > > > > MTHFR/thrombophylia, but that really has never been " hashed out " they > > > > > just tried putting me on heparin shots daily my 2nd pregnancy (which got > > > > > me not one day further along, delivered son--now 7-- at 29 weeks!). > > > > > > > > > > I have read the NIH report regarding hyperaldo and know for sure that > > > > > the lab that did some of my initial bloodwork did NOT follow the > > > > > " preparation for ARR " measurement guidelines...not sure if that could > > > > > have skewed my results? I also was not up and walking around/sitting up > > > > > for 2 hours prior to the lab work. > > > > > > > > > > I had the saline suppression test (and while there it took them 4 hours > > > > > to get my potassium high enough to perform the 4 hour test, so was there > > > > > all day long). I was not lying down prior to the test while they were > > > > > trying to get my potassium up and I got up twice during it having to > > > > > urinate (yet they did not measure urine output which I have read should > > > > > have been done?)? My results from the saline supression test led my > > > > > Endocrinologist to order a CT scan. Endocrinologist informed me the CT > > > > > scan was " normal " as far as my adrenal glands but showed cysts in both > > > > > kidneys and kidney stones. She diagnosed hyperaldo based on the saline > > > > > suppression test I guess. Have been on Spiro for about a week now along > > > > > with 2 bp meds. > > > > > > > > > > Still having severe near constant muscle pain and spasms, with no real > > > > > relief. Also left side pain frequently and still the edema in left > > > > > calf/foot. Endocrinologist seems to think that her role is done and that > > > > > I just need to take the Spiro and have labs re-checked in 6-8 weeks. > > > > > > > > > > One symptom that does not fit any of this is that I experienced sudden > > > > > severe edema of my left lower leg and foot out of nowhere about a month > > > > > and a half ago. I had some numbness and tingling prior to noticing the > > > > > swelling, and ended up being sent to the ER (could not fit on ANY > > > > > shoes...even flip flops). The ER held me for 8 hours and essentially > > > > > ordered labs, gave me oral potassium, and did nothing---sent me home > > > > > like that--with the same severity of the edema and no explanation > > > > > whatsoever for it. Went to my primary care the next day and she referred > > > > > me to Endocrinologist. Both my primary care and the Endocrinlogist have > > > > > " noted " the severe edema all on my left lower leg and foot yet NO ONE > > > > > has done anything about it or suggested anything---as if I should just > > > > > go around not fitting shoes on indefinitely while ummm...trying to raise > > > > > two active kids! I can fit flip flops on occasionally. Wondering if the > > > > > edema could have something to do with the kidney cysts (only one cyst > > > > > was of measurable size on the CT but, it was on my left kidney...I'm > > > > > thinking left kidney, left calf and foot edema...connection??)? Has > > > > > anyone else had sudden onset edema in relation to primary aldo?? It > > > > > doesn't seem to fit. > > > > > > > > > > I don't have a lot of confidence in my Endocrinologist, though I've only > > > > > seen her 3 times. She is very hard to understand and I have to have her > > > > > assistant write everything down (the Endocrinologist is from India and > > > > > was trained there and I seriously can barely decipher a word she says). > > > > > The fact that she has not mentioned doing AVS at all or determining the > > > > > exact source of the high aldosterone (she says the CT doesn't show that > > > > > the adrenal glands are the issue!)... > > > > > > > > > > Feedback? Similar experiences? Anyone else who had severe HELLP syndrome > > > > > in pregnancy resulting in early deliveries (wondering if there is a > > > > > connection to prematurity!)? Suggestions for anything else I need to be > > > > > asking this Endocrinologist or if I should simply just be taking the > > > > > Spiro and that's it?? > > > > > > > > > > Thanks, > > > > > > > > > > > > > > > > > > > > Louisville KY > > > > > > > > > > (Born and raised in Missouri--Go Tigers!). > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2012 Report Share Posted April 25, 2012 Need to ask if the. Mood clotting test the used has been well studied in MTHF...Or you can look it up in pubmed May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 24, 2012, at 23:29, gemgal633 <gemgal633@...> wrote: I argued with the charge nurse and the ER doc that they should NOT be releasing me and sending me home with the left leg/foot edema and having NOT done an ultrasound. They claimed that "edema can just happen and not have a specific cause" and that I needed to follow up with my pcp the next day about it (ummm...that's why my pcp told me to go to the ER when I called her at midnight, so that the ER would figure it out!). I repeatedly reminded everyone who I came in contact with at the ER that I had MTHFR/a blood clotting disorder and that I was concerned the sudden edema could be blood clot related. They insisted a blood test showed no sign of blood clot. My pcp and the endocrinologist also keep referring to the labs done at the ER---saying that a specific clotting test done didn't show a high risk of there being a clot. Going to try again tomorrow to insist on getting a thorough ultrasound done to verify if there is or isn't a blood clot somewhere!!! I am very outspoken and have argued with all of these doctors and nurses and made them aware of my blood clotting disorder....and to no avail for weeks now. It's crazy making for sure. > > > > > > > > > > > > Hi, I'm . Just found this site recently, and am hoping it > > > > becomes helpful in this maze of trying to figure the craziness out! > > > > > > > > So, after years of unexplained extremely high bp despite my BMI being > > > > great, exercise, and medications for bp and other strange symptoms for > > > > at least 5 years (maybe 10), I was recently diagnosed as having primary > > > > hyperaldosteronism by a local Endocrinologist. > > > > > > > > I am 33 years old and have had bouts of very low potassium (around 2.0 > > > > to 4.3 fluctuating frequently) that has landed me in the ER at least 3 > > > > times in the past year and a half and which delayed a necessary surgery > > > > twice (until they could get my levels stable enough for surgery). > > > > Despite how many times my potassium was low/has been low, my primary > > > > care doc, GYN who had to delay the surgery twice, and ER docs merely > > > > treated me by doing iv and/or oral potassium then re-testing a week or > > > > so later, adding potassium pills as needed, and changing bp meds around. > > > > I had extreme HELLP syndrome with both pregnancies, and delivered both > > > > of my children at 29 weeks gestation (11 weeks early). Some antibody > > > > testing my OB did (and sent to labs in California) after my 10 yr old > > > > daughter's early birth showed I had a blood clotting disorder > > > > MTHFR/thrombophylia, but that really has never been "hashed out" they > > > > just tried putting me on heparin shots daily my 2nd pregnancy (which got > > > > me not one day further along, delivered son--now 7-- at 29 weeks!). > > > > > > > > I have read the NIH report regarding hyperaldo and know for sure that > > > > the lab that did some of my initial bloodwork did NOT follow the > > > > "preparation for ARR" measurement guidelines...not sure if that could > > > > have skewed my results? I also was not up and walking around/sitting up > > > > for 2 hours prior to the lab work. > > > > > > > > I had the saline suppression test (and while there it took them 4 hours > > > > to get my potassium high enough to perform the 4 hour test, so was there > > > > all day long). I was not lying down prior to the test while they were > > > > trying to get my potassium up and I got up twice during it having to > > > > urinate (yet they did not measure urine output which I have read should > > > > have been done?)? My results from the saline supression test led my > > > > Endocrinologist to order a CT scan. Endocrinologist informed me the CT > > > > scan was "normal" as far as my adrenal glands but showed cysts in both > > > > kidneys and kidney stones. She diagnosed hyperaldo based on the saline > > > > suppression test I guess. Have been on Spiro for about a week now along > > > > with 2 bp meds. > > > > > > > > Still having severe near constant muscle pain and spasms, with no real > > > > relief. Also left side pain frequently and still the edema in left > > > > calf/foot. Endocrinologist seems to think that her role is done and that > > > > I just need to take the Spiro and have labs re-checked in 6-8 weeks. > > > > > > > > One symptom that does not fit any of this is that I experienced sudden > > > > severe edema of my left lower leg and foot out of nowhere about a month > > > > and a half ago. I had some numbness and tingling prior to noticing the > > > > swelling, and ended up being sent to the ER (could not fit on ANY > > > > shoes...even flip flops). The ER held me for 8 hours and essentially > > > > ordered labs, gave me oral potassium, and did nothing---sent me home > > > > like that--with the same severity of the edema and no explanation > > > > whatsoever for it. Went to my primary care the next day and she referred > > > > me to Endocrinologist. Both my primary care and the Endocrinlogist have > > > > "noted" the severe edema all on my left lower leg and foot yet NO ONE > > > > has done anything about it or suggested anything---as if I should just > > > > go around not fitting shoes on indefinitely while ummm...trying to raise > > > > two active kids! I can fit flip flops on occasionally. Wondering if the > > > > edema could have something to do with the kidney cysts (only one cyst > > > > was of measurable size on the CT but, it was on my left kidney...I'm > > > > thinking left kidney, left calf and foot edema...connection??)? Has > > > > anyone else had sudden onset edema in relation to primary aldo?? It > > > > doesn't seem to fit. > > > > > > > > I don't have a lot of confidence in my Endocrinologist, though I've only > > > > seen her 3 times. She is very hard to understand and I have to have her > > > > assistant write everything down (the Endocrinologist is from India and > > > > was trained there and I seriously can barely decipher a word she says). > > > > The fact that she has not mentioned doing AVS at all or determining the > > > > exact source of the high aldosterone (she says the CT doesn't show that > > > > the adrenal glands are the issue!)... > > > > > > > > Feedback? Similar experiences? Anyone else who had severe HELLP syndrome > > > > in pregnancy resulting in early deliveries (wondering if there is a > > > > connection to prematurity!)? Suggestions for anything else I need to be > > > > asking this Endocrinologist or if I should simply just be taking the > > > > Spiro and that's it?? > > > > > > > > Thanks, > > > > > > > > > > > > > > > > Louisville KY > > > > > > > > (Born and raised in Missouri--Go Tigers!). > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2012 Report Share Posted April 25, 2012 Sorry blood clotting tests. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 25, 2012, at 15:48, Clarence Grim <lowerbp2@...> wrote: Need to ask if the. Mood clotting test the used has been well studied in MTHF...Or you can look it up in pubmed May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Apr 24, 2012, at 23:29, gemgal633 <gemgal633@...> wrote: I argued with the charge nurse and the ER doc that they should NOT be releasing me and sending me home with the left leg/foot edema and having NOT done an ultrasound. They claimed that "edema can just happen and not have a specific cause" and that I needed to follow up with my pcp the next day about it (ummm...that's why my pcp told me to go to the ER when I called her at midnight, so that the ER would figure it out!). I repeatedly reminded everyone who I came in contact with at the ER that I had MTHFR/a blood clotting disorder and that I was concerned the sudden edema could be blood clot related. They insisted a blood test showed no sign of blood clot. My pcp and the endocrinologist also keep referring to the labs done at the ER---saying that a specific clotting test done didn't show a high risk of there being a clot. Going to try again tomorrow to insist on getting a thorough ultrasound done to verify if there is or isn't a blood clot somewhere!!! I am very outspoken and have argued with all of these doctors and nurses and made them aware of my blood clotting disorder....and to no avail for weeks now. It's crazy making for sure. > > > > > > > > > > > > Hi, I'm . Just found this site recently, and am hoping it > > > > becomes helpful in this maze of trying to figure the craziness out! > > > > > > > > So, after years of unexplained extremely high bp despite my BMI being > > > > great, exercise, and medications for bp and other strange symptoms for > > > > at least 5 years (maybe 10), I was recently diagnosed as having primary > > > > hyperaldosteronism by a local Endocrinologist. > > > > > > > > I am 33 years old and have had bouts of very low potassium (around 2.0 > > > > to 4.3 fluctuating frequently) that has landed me in the ER at least 3 > > > > times in the past year and a half and which delayed a necessary surgery > > > > twice (until they could get my levels stable enough for surgery). > > > > Despite how many times my potassium was low/has been low, my primary > > > > care doc, GYN who had to delay the surgery twice, and ER docs merely > > > > treated me by doing iv and/or oral potassium then re-testing a week or > > > > so later, adding potassium pills as needed, and changing bp meds around. > > > > I had extreme HELLP syndrome with both pregnancies, and delivered both > > > > of my children at 29 weeks gestation (11 weeks early). Some antibody > > > > testing my OB did (and sent to labs in California) after my 10 yr old > > > > daughter's early birth showed I had a blood clotting disorder > > > > MTHFR/thrombophylia, but that really has never been "hashed out" they > > > > just tried putting me on heparin shots daily my 2nd pregnancy (which got > > > > me not one day further along, delivered son--now 7-- at 29 weeks!). > > > > > > > > I have read the NIH report regarding hyperaldo and know for sure that > > > > the lab that did some of my initial bloodwork did NOT follow the > > > > "preparation for ARR" measurement guidelines...not sure if that could > > > > have skewed my results? I also was not up and walking around/sitting up > > > > for 2 hours prior to the lab work. > > > > > > > > I had the saline suppression test (and while there it took them 4 hours > > > > to get my potassium high enough to perform the 4 hour test, so was there > > > > all day long). I was not lying down prior to the test while they were > > > > trying to get my potassium up and I got up twice during it having to > > > > urinate (yet they did not measure urine output which I have read should > > > > have been done?)? My results from the saline supression test led my > > > > Endocrinologist to order a CT scan. Endocrinologist informed me the CT > > > > scan was "normal" as far as my adrenal glands but showed cysts in both > > > > kidneys and kidney stones. She diagnosed hyperaldo based on the saline > > > > suppression test I guess. Have been on Spiro for about a week now along > > > > with 2 bp meds. > > > > > > > > Still having severe near constant muscle pain and spasms, with no real > > > > relief. Also left side pain frequently and still the edema in left > > > > calf/foot. Endocrinologist seems to think that her role is done and that > > > > I just need to take the Spiro and have labs re-checked in 6-8 weeks. > > > > > > > > One symptom that does not fit any of this is that I experienced sudden > > > > severe edema of my left lower leg and foot out of nowhere about a month > > > > and a half ago. I had some numbness and tingling prior to noticing the > > > > swelling, and ended up being sent to the ER (could not fit on ANY > > > > shoes...even flip flops). The ER held me for 8 hours and essentially > > > > ordered labs, gave me oral potassium, and did nothing---sent me home > > > > like that--with the same severity of the edema and no explanation > > > > whatsoever for it. Went to my primary care the next day and she referred > > > > me to Endocrinologist. Both my primary care and the Endocrinlogist have > > > > "noted" the severe edema all on my left lower leg and foot yet NO ONE > > > > has done anything about it or suggested anything---as if I should just > > > > go around not fitting shoes on indefinitely while ummm...trying to raise > > > > two active kids! I can fit flip flops on occasionally. Wondering if the > > > > edema could have something to do with the kidney cysts (only one cyst > > > > was of measurable size on the CT but, it was on my left kidney...I'm > > > > thinking left kidney, left calf and foot edema...connection??)? Has > > > > anyone else had sudden onset edema in relation to primary aldo?? It > > > > doesn't seem to fit. > > > > > > > > I don't have a lot of confidence in my Endocrinologist, though I've only > > > > seen her 3 times. She is very hard to understand and I have to have her > > > > assistant write everything down (the Endocrinologist is from India and > > > > was trained there and I seriously can barely decipher a word she says). > > > > The fact that she has not mentioned doing AVS at all or determining the > > > > exact source of the high aldosterone (she says the CT doesn't show that > > > > the adrenal glands are the issue!)... > > > > > > > > Feedback? Similar experiences? Anyone else who had severe HELLP syndrome > > > > in pregnancy resulting in early deliveries (wondering if there is a > > > > connection to prematurity!)? Suggestions for anything else I need to be > > > > asking this Endocrinologist or if I should simply just be taking the > > > > Spiro and that's it?? > > > > > > > > Thanks, > > > > > > > > > > > > > > > > Louisville KY > > > > > > > > (Born and raised in Missouri--Go Tigers!). > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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