Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 Hello Everyone: I'm feeling pretty helpless at the moment. This is a ten-year journey, with the last 2 focused on the Conns Up until today I am moving close to having the adrenalectomy. I have been referred to endo and surgeon in Oxford UK. I had scans, showed an 8mm something on left gland. Did an AVS in April. Met endo in June who said AVS was inconclusive and may need to do again but surgeon would look at AVS results and get back to me. I wrote them last week to find out what is going on? Got letter from endo now calling the scans negative and the AVS " non-helpful " . I have been diagnosed with mild to moderate left ventricle damage by a cardiologist in August. I have chest pain. He says this is due to lake of oxygen due to Conns. kind of like a cramp. I take 3600MG of slow K per day and am off all drugs as I have been waiting for the next AVS. My BP is 190/115. I have the whole standard list of symptoms. I am soooo close and I am afraid that I am going to be put in the " don't have Conns but we don't know " category. What do I do now? Any advice would be appreciated. Thank you Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 Your doc might be retarded! Check it out. Doc should not leave you without medication with such high bp only for the reason of AVS test. He could at least give you some alpha-blockers ...etc. Max. | |Hello Everyone: |I'm feeling pretty helpless at the moment. This is a ten-year journey, with the |last 2 focused on the Conns | | Up until today I am moving close to having the adrenalectomy. | |I have been referred to endo and surgeon in Oxford UK. I had scans, showed |an 8mm something on left gland. Did an AVS in April. Met endo in June who |said AVS was inconclusive and may need to do again but surgeon would look |at AVS results and get back to me. I wrote them last week to find out what is |going on? Got letter from endo now calling the scans negative and the AVS | " non-helpful " . | |I have been diagnosed with mild to moderate left ventricle damage by a |cardiologist in August. I have chest pain. He says this is due to lake of oxygen |due to Conns. kind of like a cramp. | |I take 3600MG of slow K per day and am off all drugs as I have been waiting for |the next AVS. My BP is 190/115. I have the whole standard list of symptoms. | |I am soooo close and I am afraid that I am going to be put in the " don't have |Conns but we don't know " category. | |What do I do now? Any advice would be appreciated. |Thank you | |Chris | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 Thanks Max I am going to call the GP tomorrow and talk to endo tomorrow and get back on some meds now. This is such a hard climb. I just want that gland gone! > > Your doc might be retarded! Check it out. Doc should not leave you without > medication with such high bp only for the reason of AVS test. He could at > least give you some alpha-blockers ...etc. > > Max. > > | > |Hello Everyone: > |I'm feeling pretty helpless at the moment. This is a ten-year journey, with > the > |last 2 focused on the Conns > | > | Up until today I am moving close to having the adrenalectomy. > | > |I have been referred to endo and surgeon in Oxford UK. I had scans, showed > |an 8mm something on left gland. Did an AVS in April. Met endo in June who > |said AVS was inconclusive and may need to do again but surgeon would look > |at AVS results and get back to me. I wrote them last week to find out what > is > |going on? Got letter from endo now calling the scans negative and the AVS > | " non-helpful " . > | > |I have been diagnosed with mild to moderate left ventricle damage by a > |cardiologist in August. I have chest pain. He says this is due to lake of > oxygen > |due to Conns. kind of like a cramp. > | > |I take 3600MG of slow K per day and am off all drugs as I have been waiting > for > |the next AVS. My BP is 190/115. I have the whole standard list of symptoms. > | > |I am soooo close and I am afraid that I am going to be put in the " don't > have > |Conns but we don't know " category. > | > |What do I do now? Any advice would be appreciated. > |Thank you > | > |Chris > | > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 We need your story and numbers. AVS included. No mention of BP levels K problems nocturia. Can't help without more info. But. An recommend to start DASHING today and monitor BP. Get the book. Did you not read the welcome suggestions? Based on your very brief story I recommend DASHING and Spiro. Start tomorrow. But need story. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension Hello Everyone: I'm feeling pretty helpless at the moment. This is a ten-year journey, with the last 2 focused on the Conns Up until today I am moving close to having the adrenalectomy. I have been referred to endo and surgeon in Oxford UK. I had scans, showed an 8mm something on left gland. Did an AVS in April. Met endo in June who said AVS was inconclusive and may need to do again but surgeon would look at AVS results and get back to me. I wrote them last week to find out what is going on? Got letter from endo now calling the scans negative and the AVS "non-helpful". I have been diagnosed with mild to moderate left ventricle damage by a cardiologist in August. I have chest pain. He says this is due to lake of oxygen due to Conns. kind of like a cramp. I take 3600MG of slow K per day and am off all drugs as I have been waiting for the next AVS. My BP is 190/115. I have the whole standard list of symptoms. I am soooo close and I am afraid that I am going to be put in the "don't have Conns but we don't know" category. What do I do now? Any advice would be appreciated. Thank you Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 Sorry did not see BPs. Start dashing tonight and ask tomorrow to start a trial of Spiro. Expect BP to be normal in a week and u feeling aot better. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension Your doc might be retarded! Check it out. Doc should not leave you without medication with such high bp only for the reason of AVS test. He could at least give you some alpha-blockers ...etc. Max. | |Hello Everyone: |I'm feeling pretty helpless at the moment. This is a ten-year journey, with the |last 2 focused on the Conns | | Up until today I am moving close to having the adrenalectomy. | |I have been referred to endo and surgeon in Oxford UK. I had scans, showed |an 8mm something on left gland. Did an AVS in April. Met endo in June who |said AVS was inconclusive and may need to do again but surgeon would look |at AVS results and get back to me. I wrote them last week to find out what is |going on? Got letter from endo now calling the scans negative and the AVS |"non-helpful". | |I have been diagnosed with mild to moderate left ventricle damage by a |cardiologist in August. I have chest pain. He says this is due to lake of oxygen |due to Conns. kind of like a cramp. | |I take 3600MG of slow K per day and am off all drugs as I have been waiting for |the next AVS. My BP is 190/115. I have the whole standard list of symptoms. | |I am soooo close and I am afraid that I am going to be put in the "don't have |Conns but we don't know" category. | |What do I do now? Any advice would be appreciated. |Thank you | |Chris | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 But you want to be sure making it gone will make you better. I would recommend repeat AVS with ACTH if Bp and K fail to normalize on dash and Spiro. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension Thanks Max I am going to call the GP tomorrow and talk to endo tomorrow and get back on some meds now. This is such a hard climb. I just want that gland gone! > > Your doc might be retarded! Check it out. Doc should not leave you without > medication with such high bp only for the reason of AVS test. He could at > least give you some alpha-blockers ...etc. > > Max. > > | > |Hello Everyone: > |I'm feeling pretty helpless at the moment. This is a ten-year journey, with > the > |last 2 focused on the Conns > | > | Up until today I am moving close to having the adrenalectomy. > | > |I have been referred to endo and surgeon in Oxford UK. I had scans, showed > |an 8mm something on left gland. Did an AVS in April. Met endo in June who > |said AVS was inconclusive and may need to do again but surgeon would look > |at AVS results and get back to me. I wrote them last week to find out what > is > |going on? Got letter from endo now calling the scans negative and the AVS > |"non-helpful". > | > |I have been diagnosed with mild to moderate left ventricle damage by a > |cardiologist in August. I have chest pain. He says this is due to lake of > oxygen > |due to Conns. kind of like a cramp. > | > |I take 3600MG of slow K per day and am off all drugs as I have been waiting > for > |the next AVS. My BP is 190/115. I have the whole standard list of symptoms. > | > |I am soooo close and I am afraid that I am going to be put in the "don't > have > |Conns but we don't know" category. > | > |What do I do now? Any advice would be appreciated. > |Thank you > | > |Chris > | > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 Post your lab results here. Dr. Grim can tell you what was wrong with your AVS results...like if they did not use ACTH or took sample from wrong vein...etc. At this time with your results and doc interaction your doc falls in the category of retarded. After scan and finding an 8mm something they do not immediately got for AVS...1st they must do several blood works like 24-hr urine for aldosterone, renin, etc...after making sure that there is hormonal imbalance then AVS or NP59 or... will be performed to lateralize the adrenal side that is producing extra hormones like aldosterone. I guess British junior docs are experimenting on you! Unless you know some procedures you might be abused in London with the British healthcare system. Make sure AVS is not done by a resident but an experienced radiologist...kick his resident assistant out of the operating room! Max. | |Thanks Max |I am going to call the GP tomorrow and talk to endo tomorrow and get back on |some meds now. | |This is such a hard climb. I just want that gland gone! | | |> |> Your doc might be retarded! Check it out. Doc should not leave you |> without medication with such high bp only for the reason of AVS test. |> He could at least give you some alpha-blockers ...etc. |> |> Max. |> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 If there is a chance they need to repeat the AVS you may want to hold off on the Spirolactone, otherwise you'll need to delay for 6 weeks to wash it out of your system. Need your info to see where you've been and what all is going on. I had LVH bad enough to require supplemental oxygen. When I got PA under control it resolved enough so I was able to discontinue the O2 in about 12 weeks. I have an adnoma in my right adrenal but never did any testing since Meds and DASH have taken care of all SXs. - 65 yo super ob. male - 12mm X 13mm rt. a.adnoma with previous rt. flank pain. Treating with Meds. And DASH. . Current BP(last week ave): 131/76 HR 60 Other Issues/Opportunities: OSA w Bi-Pap settings 13/19, DM2, and PTSD. Meds: Duloxetine hcl 80 MG, Metoprolol Tartrate 200 MG, 81mg asprin, Metformin 2000MG and Spironolactone 50 MG. > > > > > > Your doc might be retarded! Check it out. Doc should not leave you without > > > medication with such high bp only for the reason of AVS test. He could at > > > least give you some alpha-blockers ...etc. > > > > > > Max. > > > > > > | > > > |Hello Everyone: > > > |I'm feeling pretty helpless at the moment. This is a ten-year journey, with > > > the > > > |last 2 focused on the Conns > > > | > > > | Up until today I am moving close to having the adrenalectomy. > > > | > > > |I have been referred to endo and surgeon in Oxford UK. I had scans, showed > > > |an 8mm something on left gland. Did an AVS in April. Met endo in June who > > > |said AVS was inconclusive and may need to do again but surgeon would look > > > |at AVS results and get back to me. I wrote them last week to find out what > > > is > > > |going on? Got letter from endo now calling the scans negative and the AVS > > > | " non-helpful " . > > > | > > > |I have been diagnosed with mild to moderate left ventricle damage by a > > > |cardiologist in August. I have chest pain. He says this is due to lake of > > > oxygen > > > |due to Conns. kind of like a cramp. > > > | > > > |I take 3600MG of slow K per day and am off all drugs as I have been waiting > > > for > > > |the next AVS. My BP is 190/115. I have the whole standard list of symptoms. > > > | > > > |I am soooo close and I am afraid that I am going to be put in the " don't > > > have > > > |Conns but we don't know " category. > > > | > > > |What do I do now? Any advice would be appreciated. > > > |Thank you > > > | > > > |Chris > > > | > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 Get the exact numbers from your AVS and let Dr. Grim look at them. HTN and left ventricular damage. June AVS and no word until October? Nice! Has anyone told you to DASH? If not, you are the victim of malpractice. You have to learn everything you can and advocate for yourself. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of s Hello Everyone:I'm feeling pretty helpless at the moment. This is a ten-year journey, with the last 2 focused on the ConnsUp until today I am moving close to having the adrenalectomy.I have been referred to endo and surgeon in Oxford UK. I had scans, showed an 8mm something on left gland. Did an AVS in April. Met endo in June who said AVS was inconclusive and may need to do again but surgeon would look at AVS results and get back to me. I wrote them last week to find out what is going on? Got letter from endo now calling the scans negative and the AVS " non-helpful " . I have been diagnosed with mild to moderate left ventricle damage by a cardiologist in August. I have chest pain. He says this is due to lake of oxygen due to Conns. kind of like a cramp.I take 3600MG of slow K per day and am off all drugs as I have been waiting for the next AVS. My BP is 190/115. I have the whole standard list of symptoms.I am soooo close and I am afraid that I am going to be put in the " don't have Conns but we don't know " category.What do I do now? Any advice would be appreciated.Thank youChris. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Hello Everyone, Thank you for your replies. I will begin DASHING and getting a profile and my results ready for you to view, this will take a week I think. I was on Eplerenone, 50mg before the AVS for about 1 month. Nothing happened. I then had to stop for the AVS test. Should I go back on this? How long before, what dose? What else should I take? I will see GP tomorrow. I am a 45 yr old male, about 5 feet 10 and 210lbs with long term uncontrolled high BP, as I got in my 40s it got worse and no meds work. This has ben about I feel really crap most of the time, low energy, chest pain when walking. Just got 2 migraines for the first time in my life. I have many other symptoms like I urinate 15 times per day, cant sleep, low K (I take about 3600mg per day). Low calcium but pills make me feel bad. Flank pain as they call it. Mood swings. Went to local endo, who did tests for conns after I forced him to. Had scans, 24 hr urine, and other tests I can't remember now. I will request all my tests. Then local endo did not know what to do next, as he never had a case of Conns. I found a hospital in UK, in Oxford that is supposed to specialize in this. Got a referral to the leading surgeon. Met Mr. Sadler in Dec. 2010. He told me he has done 600 adrenalectomy. He wanted to do all the tests again from his hospital. He never did. He looked at scan from local hospital and saw 8mm " something " booked me in for AVS, after one cancellation I got the AVS in April 2011. Saw endo for results in June 2011. Endo said the AVS results were inconclusive. I don't know why. Endo said that surgeon needs to see results to decide if do AVS again or just remove left gland. I have still not heard from the surgeon. Also endo did blood work in June and found K very low, called me at 10pm at home and told me to take 3600mg k per day and get blood tested in 2 weeks. K then normal but have not had K tested in 3 months. Was diagnosed with LVH by cardiologist in Aug. 2011. I wrote stern letter to endo and surgeon last week and got an email from endo last night. I am calling her Wednesday. What do I need to ask endo/surgeon when I speak to her on Wed? Thank you very much Chris > > Get the exact numbers from your AVS and let Dr. Grim look at them. HTN and > left ventricular damage. June AVS and no word until October? Nice! Has > anyone told you to DASH? If not, you are the victim of malpractice. You > have to learn everything you can and advocate for yourself. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of s > > Hello Everyone: > I'm feeling pretty helpless at the moment. This is a ten-year journey, with > the last 2 focused on the Conns > > Up until today I am moving close to having the adrenalectomy. > > I have been referred to endo and surgeon in Oxford UK. I had scans, showed > an 8mm something on left gland. Did an AVS in April. Met endo in June who > said AVS was inconclusive and may need to do again but surgeon would look at > AVS results and get back to me. I wrote them last week to find out what is > going on? Got letter from endo now calling the scans negative and the AVS > " non-helpful " . > > I have been diagnosed with mild to moderate left ventricle damage by a > cardiologist in August. I have chest pain. He says this is due to lake of > oxygen due to Conns. kind of like a cramp. > > I take 3600MG of slow K per day and am off all drugs as I have been waiting > for the next AVS. My BP is 190/115. I have the whole standard list of > symptoms. > > I am soooo close and I am afraid that I am going to be put in the " don't > have Conns but we don't know " category. > > What do I do now? Any advice would be appreciated. > Thank you > > Chris > . > > <http://geo.yahoo.com/serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > =37486/stime=1320107520/nc1=3848640/nc2=5191951/nc3=5191946> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Thanks for the advice. I will take it. Chris > > Get the exact numbers from your AVS and let Dr. Grim look at them. HTN and > left ventricular damage. June AVS and no word until October? Nice! Has > anyone told you to DASH? If not, you are the victim of malpractice. You > have to learn everything you can and advocate for yourself. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of s > > Hello Everyone: > I'm feeling pretty helpless at the moment. This is a ten-year journey, with > the last 2 focused on the Conns > > Up until today I am moving close to having the adrenalectomy. > > I have been referred to endo and surgeon in Oxford UK. I had scans, showed > an 8mm something on left gland. Did an AVS in April. Met endo in June who > said AVS was inconclusive and may need to do again but surgeon would look at > AVS results and get back to me. I wrote them last week to find out what is > going on? Got letter from endo now calling the scans negative and the AVS > " non-helpful " . > > I have been diagnosed with mild to moderate left ventricle damage by a > cardiologist in August. I have chest pain. He says this is due to lake of > oxygen due to Conns. kind of like a cramp. > > I take 3600MG of slow K per day and am off all drugs as I have been waiting > for the next AVS. My BP is 190/115. I have the whole standard list of > symptoms. > > I am soooo close and I am afraid that I am going to be put in the " don't > have Conns but we don't know " category. > > What do I do now? Any advice would be appreciated. > Thank you > > Chris > . > > <http://geo.yahoo.com/serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > =37486/stime=1320107520/nc1=3848640/nc2=5191951/nc3=5191946> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Dr. Grim I will take Inspra, 50mg did not work in past when taken for 30 days, discontiuned due to AVS wait, what is max amount I can take and what should it be taken with? > > > > > > Your doc might be retarded! Check it out. Doc should not leave you without > > > medication with such high bp only for the reason of AVS test. He could at > > > least give you some alpha-blockers ...etc. > > > > > > Max. > > > > > > | > > > |Hello Everyone: > > > |I'm feeling pretty helpless at the moment. This is a ten-year journey, with > > > the > > > |last 2 focused on the Conns > > > | > > > | Up until today I am moving close to having the adrenalectomy. > > > | > > > |I have been referred to endo and surgeon in Oxford UK. I had scans, showed > > > |an 8mm something on left gland. Did an AVS in April. Met endo in June who > > > |said AVS was inconclusive and may need to do again but surgeon would look > > > |at AVS results and get back to me. I wrote them last week to find out what > > > is > > > |going on? Got letter from endo now calling the scans negative and the AVS > > > | " non-helpful " . > > > | > > > |I have been diagnosed with mild to moderate left ventricle damage by a > > > |cardiologist in August. I have chest pain. He says this is due to lake of > > > oxygen > > > |due to Conns. kind of like a cramp. > > > | > > > |I take 3600MG of slow K per day and am off all drugs as I have been waiting > > > for > > > |the next AVS. My BP is 190/115. I have the whole standard list of symptoms. > > > | > > > |I am soooo close and I am afraid that I am going to be put in the " don't > > > have > > > |Conns but we don't know " category. > > > | > > > |What do I do now? Any advice would be appreciated. > > > |Thank you > > > | > > > |Chris > > > | > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Thank you, I will get all these test results, should take a week for them to come. Chris > > > Hello Everyone: > > I'm feeling pretty helpless at the moment. This is a ten-year journey, with the last 2 focused on the Conns > > > > Up until today I am moving close to having the adrenalectomy. > > > > I have been referred to endo and surgeon in Oxford UK. I had scans, showed an 8mm something on left gland. Did an AVS in April. Met endo in June who said AVS was inconclusive and may need to do again but surgeon would look at AVS results and get back to me. I wrote them last week to find out what is going on? Got letter from endo now calling the scans negative and the AVS " non-helpful " . > > > > I have been diagnosed with mild to moderate left ventricle damage by a cardiologist in August. I have chest pain. He says this is due to lake of oxygen due to Conns. kind of like a cramp. > > > > I take 3600MG of slow K per day and am off all drugs as I have been waiting for the next AVS. My BP is 190/115. I have the whole standard list of symptoms. > > > > I am soooo close and I am afraid that I am going to be put in the " don't have Conns but we don't know " category. > > > > What do I do now? Any advice would be appreciated. > > Thank you > > > > Chris > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Thank you. I am going back on Eplerenone until I get 100% clear that a new AVS is NOT happening right now I can wait a couple days for that. > > > > > > > > Your doc might be retarded! Check it out. Doc should not leave you without > > > > medication with such high bp only for the reason of AVS test. He could at > > > > least give you some alpha-blockers ...etc. > > > > > > > > Max. > > > > > > > > | > > > > |Hello Everyone: > > > > |I'm feeling pretty helpless at the moment. This is a ten-year journey, with > > > > the > > > > |last 2 focused on the Conns > > > > | > > > > | Up until today I am moving close to having the adrenalectomy. > > > > | > > > > |I have been referred to endo and surgeon in Oxford UK. I had scans, showed > > > > |an 8mm something on left gland. Did an AVS in April. Met endo in June who > > > > |said AVS was inconclusive and may need to do again but surgeon would look > > > > |at AVS results and get back to me. I wrote them last week to find out what > > > > is > > > > |going on? Got letter from endo now calling the scans negative and the AVS > > > > | " non-helpful " . > > > > | > > > > |I have been diagnosed with mild to moderate left ventricle damage by a > > > > |cardiologist in August. I have chest pain. He says this is due to lake of > > > > oxygen > > > > |due to Conns. kind of like a cramp. > > > > | > > > > |I take 3600MG of slow K per day and am off all drugs as I have been waiting > > > > for > > > > |the next AVS. My BP is 190/115. I have the whole standard list of symptoms. > > > > | > > > > |I am soooo close and I am afraid that I am going to be put in the " don't > > > > have > > > > |Conns but we don't know " category. > > > > | > > > > |What do I do now? Any advice would be appreciated. > > > > |Thank you > > > > | > > > > |Chris > > > > | > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 FYI the same would apply to eplerenone - if you are repeating the AVS, you will need to be off of it for a minimum of 4 to 6 weeks. > > > > > > > > > > Your doc might be retarded! Check it out. Doc should not leave you without > > > > > medication with such high bp only for the reason of AVS test. He could at > > > > > least give you some alpha-blockers ...etc. > > > > > > > > > > Max. > > > > > > > > > > | > > > > > |Hello Everyone: > > > > > |I'm feeling pretty helpless at the moment. This is a ten-year journey, with > > > > > the > > > > > |last 2 focused on the Conns > > > > > | > > > > > | Up until today I am moving close to having the adrenalectomy. > > > > > | > > > > > |I have been referred to endo and surgeon in Oxford UK. I had scans, showed > > > > > |an 8mm something on left gland. Did an AVS in April. Met endo in June who > > > > > |said AVS was inconclusive and may need to do again but surgeon would look > > > > > |at AVS results and get back to me. I wrote them last week to find out what > > > > > is > > > > > |going on? Got letter from endo now calling the scans negative and the AVS > > > > > | " non-helpful " . > > > > > | > > > > > |I have been diagnosed with mild to moderate left ventricle damage by a > > > > > |cardiologist in August. I have chest pain. He says this is due to lake of > > > > > oxygen > > > > > |due to Conns. kind of like a cramp. > > > > > | > > > > > |I take 3600MG of slow K per day and am off all drugs as I have been waiting > > > > > for > > > > > |the next AVS. My BP is 190/115. I have the whole standard list of symptoms. > > > > > | > > > > > |I am soooo close and I am afraid that I am going to be put in the " don't > > > > > have > > > > > |Conns but we don't know " category. > > > > > | > > > > > |What do I do now? Any advice would be appreciated. > > > > > |Thank you > > > > > | > > > > > |Chris > > > > > | > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Eplere has same wait time. Send us your AVS numbers using the report form in our files. Many mds don't know how to interpret them. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension Thank you. I am going back on Eplerenone until I get 100% clear that a new AVS is NOT happening right now I can wait a couple days for that. > > > > > > > > Your doc might be retarded! Check it out. Doc should not leave you without > > > > medication with such high bp only for the reason of AVS test. He could at > > > > least give you some alpha-blockers ...etc. > > > > > > > > Max. > > > > > > > > | > > > > |Hello Everyone: > > > > |I'm feeling pretty helpless at the moment. This is a ten-year journey, with > > > > the > > > > |last 2 focused on the Conns > > > > | > > > > | Up until today I am moving close to having the adrenalectomy. > > > > | > > > > |I have been referred to endo and surgeon in Oxford UK. I had scans, showed > > > > |an 8mm something on left gland. Did an AVS in April. Met endo in June who > > > > |said AVS was inconclusive and may need to do again but surgeon would look > > > > |at AVS results and get back to me. I wrote them last week to find out what > > > > is > > > > |going on? Got letter from endo now calling the scans negative and the AVS > > > > |"non-helpful". > > > > | > > > > |I have been diagnosed with mild to moderate left ventricle damage by a > > > > |cardiologist in August. I have chest pain. He says this is due to lake of > > > > oxygen > > > > |due to Conns. kind of like a cramp. > > > > | > > > > |I take 3600MG of slow K per day and am off all drugs as I have been waiting > > > > for > > > > |the next AVS. My BP is 190/115. I have the whole standard list of symptoms. > > > > | > > > > |I am soooo close and I am afraid that I am going to be put in the "don't > > > > have > > > > |Conns but we don't know" category. > > > > | > > > > |What do I do now? Any advice would be appreciated. > > > > |Thank you > > > > | > > > > |Chris > > > > | > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Don't know u well enough to recommend. Yet u need enough to get rid of low K Sx and control Bp when u DASH. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension Dr. Grim I will take Inspra, 50mg did not work in past when taken for 30 days, discontiuned due to AVS wait, what is max amount I can take and what should it be taken with? > > > > > > Your doc might be retarded! Check it out. Doc should not leave you without > > > medication with such high bp only for the reason of AVS test. He could at > > > least give you some alpha-blockers ...etc. > > > > > > Max. > > > > > > | > > > |Hello Everyone: > > > |I'm feeling pretty helpless at the moment. This is a ten-year journey, with > > > the > > > |last 2 focused on the Conns > > > | > > > | Up until today I am moving close to having the adrenalectomy. > > > | > > > |I have been referred to endo and surgeon in Oxford UK. I had scans, showed > > > |an 8mm something on left gland. Did an AVS in April. Met endo in June who > > > |said AVS was inconclusive and may need to do again but surgeon would look > > > |at AVS results and get back to me. I wrote them last week to find out what > > > is > > > |going on? Got letter from endo now calling the scans negative and the AVS > > > |"non-helpful". > > > | > > > |I have been diagnosed with mild to moderate left ventricle damage by a > > > |cardiologist in August. I have chest pain. He says this is due to lake of > > > oxygen > > > |due to Conns. kind of like a cramp. > > > | > > > |I take 3600MG of slow K per day and am off all drugs as I have been waiting > > > for > > > |the next AVS. My BP is 190/115. I have the whole standard list of symptoms. > > > | > > > |I am soooo close and I am afraid that I am going to be put in the "don't > > > have > > > |Conns but we don't know" category. > > > | > > > |What do I do now? Any advice would be appreciated. > > > |Thank you > > > | > > > |Chris > > > | > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 DASH LIKE YOUR LIFE DEPENDED ON IT IN MEANTIME. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension Thank you, I will get all these test results, should take a week for them to come. Chris > > > Hello Everyone: > > I'm feeling pretty helpless at the moment. This is a ten-year journey, with the last 2 focused on the Conns > > > > Up until today I am moving close to having the adrenalectomy. > > > > I have been referred to endo and surgeon in Oxford UK. I had scans, showed an 8mm something on left gland. Did an AVS in April. Met endo in June who said AVS was inconclusive and may need to do again but surgeon would look at AVS results and get back to me. I wrote them last week to find out what is going on? Got letter from endo now calling the scans negative and the AVS "non-helpful". > > > > I have been diagnosed with mild to moderate left ventricle damage by a cardiologist in August. I have chest pain. He says this is due to lake of oxygen due to Conns. kind of like a cramp. > > > > I take 3600MG of slow K per day and am off all drugs as I have been waiting for the next AVS. My BP is 190/115. I have the whole standard list of symptoms. > > > > I am soooo close and I am afraid that I am going to be put in the "don't have Conns but we don't know" category. > > > > What do I do now? Any advice would be appreciated. > > Thank you > > > > Chris > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 You can outsalt eplerenone. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension Hello Everyone, Thank you for your replies. I will begin DASHING and getting a profile and my results ready for you to view, this will take a week I think. I was on Eplerenone, 50mg before the AVS for about 1 month. Nothing happened. I then had to stop for the AVS test. Should I go back on this? How long before, what dose? What else should I take? I will see GP tomorrow. I am a 45 yr old male, about 5 feet 10 and 210lbs with long term uncontrolled high BP, as I got in my 40s it got worse and no meds work. This has ben about I feel really crap most of the time, low energy, chest pain when walking. Just got 2 migraines for the first time in my life. I have many other symptoms like I urinate 15 times per day, cant sleep, low K (I take about 3600mg per day). Low calcium but pills make me feel bad. Flank pain as they call it. Mood swings. Went to local endo, who did tests for conns after I forced him to. Had scans, 24 hr urine, and other tests I can't remember now. I will request all my tests. Then local endo did not know what to do next, as he never had a case of Conns. I found a hospital in UK, in Oxford that is supposed to specialize in this. Got a referral to the leading surgeon. Met Mr. Sadler in Dec. 2010. He told me he has done 600 adrenalectomy. He wanted to do all the tests again from his hospital. He never did. He looked at scan from local hospital and saw 8mm "something" booked me in for AVS, after one cancellation I got the AVS in April 2011. Saw endo for results in June 2011. Endo said the AVS results were inconclusive. I don't know why. Endo said that surgeon needs to see results to decide if do AVS again or just remove left gland. I have still not heard from the surgeon. Also endo did blood work in June and found K very low, called me at 10pm at home and told me to take 3600mg k per day and get blood tested in 2 weeks. K then normal but have not had K tested in 3 months. Was diagnosed with LVH by cardiologist in Aug. 2011. I wrote stern letter to endo and surgeon last week and got an email from endo last night. I am calling her Wednesday. What do I need to ask endo/surgeon when I speak to her on Wed? Thank you very much Chris > > Get the exact numbers from your AVS and let Dr. Grim look at them. HTN and > left ventricular damage. June AVS and no word until October? Nice! Has > anyone told you to DASH? If not, you are the victim of malpractice. You > have to learn everything you can and advocate for yourself. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of s > > Hello Everyone: > I'm feeling pretty helpless at the moment. This is a ten-year journey, with > the last 2 focused on the Conns > > Up until today I am moving close to having the adrenalectomy. > > I have been referred to endo and surgeon in Oxford UK. I had scans, showed > an 8mm something on left gland. Did an AVS in April. Met endo in June who > said AVS was inconclusive and may need to do again but surgeon would look at > AVS results and get back to me. I wrote them last week to find out what is > going on? Got letter from endo now calling the scans negative and the AVS > "non-helpful". > > I have been diagnosed with mild to moderate left ventricle damage by a > cardiologist in August. I have chest pain. He says this is due to lake of > oxygen due to Conns. kind of like a cramp. > > I take 3600MG of slow K per day and am off all drugs as I have been waiting > for the next AVS. My BP is 190/115. I have the whole standard list of > symptoms. > > I am soooo close and I am afraid that I am going to be put in the "don't > have Conns but we don't know" category. > > What do I do now? Any advice would be appreciated. > Thank you > > Chris > . > > <http://geo.yahoo.com/serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > =37486/stime=1320107520/nc1=3848640/nc2=5191951/nc3=5191946> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 I will. thank you. > > > > > > > Hello Everyone: > > > > I'm feeling pretty helpless at the moment. This is a ten-year journey, with the last 2 focused on the Conns > > > > > > > > Up until today I am moving close to having the adrenalectomy. > > > > > > > > I have been referred to endo and surgeon in Oxford UK. I had scans, showed an 8mm something on left gland. Did an AVS in April. Met endo in June who said AVS was inconclusive and may need to do again but surgeon would look at AVS results and get back to me. I wrote them last week to find out what is going on? Got letter from endo now calling the scans negative and the AVS " non-helpful " . > > > > > > > > I have been diagnosed with mild to moderate left ventricle damage by a cardiologist in August. I have chest pain. He says this is due to lake of oxygen due to Conns. kind of like a cramp. > > > > > > > > I take 3600MG of slow K per day and am off all drugs as I have been waiting for the next AVS. My BP is 190/115. I have the whole standard list of symptoms. > > > > > > > > I am soooo close and I am afraid that I am going to be put in the " don't have Conns but we don't know " category. > > > > > > > > What do I do now? Any advice would be appreciated. > > > > Thank you > > > > > > > > Chris > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Dr. Grim I have phone call with my endo tomorrow Can you please suggest what I need to ask her in terms of what you need to know? 1. Was the AVS done with ACTH- Adrenocorticotrophic Hormone. yes or no. 2. AVS - what were my numbers? 3. What is my renin to ado ratio from my records? 4. Please send me a copy of all my records to this address. > > > > > > > Hello Everyone: > > > > I'm feeling pretty helpless at the moment. This is a ten-year journey, with the last 2 focused on the Conns > > > > > > > > Up until today I am moving close to having the adrenalectomy. > > > > > > > > I have been referred to endo and surgeon in Oxford UK. I had scans, showed an 8mm something on left gland. Did an AVS in April. Met endo in June who said AVS was inconclusive and may need to do again but surgeon would look at AVS results and get back to me. I wrote them last week to find out what is going on? Got letter from endo now calling the scans negative and the AVS " non-helpful " . > > > > > > > > I have been diagnosed with mild to moderate left ventricle damage by a cardiologist in August. I have chest pain. He says this is due to lake of oxygen due to Conns. kind of like a cramp. > > > > > > > > I take 3600MG of slow K per day and am off all drugs as I have been waiting for the next AVS. My BP is 190/115. I have the whole standard list of symptoms. > > > > > > > > I am soooo close and I am afraid that I am going to be put in the " don't have Conns but we don't know " category. > > > > > > > > What do I do now? Any advice would be appreciated. > > > > Thank you > > > > > > > > Chris > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 okay, no salt then. thank you sir > > > > > > Get the exact numbers from your AVS and let Dr. Grim look at them. HTN and > > > left ventricular damage. June AVS and no word until October? Nice! Has > > > anyone told you to DASH? If not, you are the victim of malpractice. You > > > have to learn everything you can and advocate for yourself. > > > > > > Val > > > > > > From: hyperaldosteronism > > > [mailto:hyperaldosteronism ] On Behalf Of s > > > > > > Hello Everyone: > > > I'm feeling pretty helpless at the moment. This is a ten-year journey, with > > > the last 2 focused on the Conns > > > > > > Up until today I am moving close to having the adrenalectomy. > > > > > > I have been referred to endo and surgeon in Oxford UK. I had scans, showed > > > an 8mm something on left gland. Did an AVS in April. Met endo in June who > > > said AVS was inconclusive and may need to do again but surgeon would look at > > > AVS results and get back to me. I wrote them last week to find out what is > > > going on? Got letter from endo now calling the scans negative and the AVS > > > " non-helpful " . > > > > > > I have been diagnosed with mild to moderate left ventricle damage by a > > > cardiologist in August. I have chest pain. He says this is due to lake of > > > oxygen due to Conns. kind of like a cramp. > > > > > > I take 3600MG of slow K per day and am off all drugs as I have been waiting > > > for the next AVS. My BP is 190/115. I have the whole standard list of > > > symptoms. > > > > > > I am soooo close and I am afraid that I am going to be put in the " don't > > > have Conns but we don't know " category. > > > > > > What do I do now? Any advice would be appreciated. > > > Thank you > > > > > > Chris > > > . > > > > > > <http://geo.yahoo.com/serv?s=97359714/grpId=7299303/grpspId=1705132763/msgId > > > =37486/stime=1320107520/nc1=3848640/nc2=5191951/nc3=5191946> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Add item 5: | |1. Was the AVS done with ACTH- Adrenocorticotrophic Hormone. yes or no. | |2. AVS - what were my numbers? | |3. What is my renin to ado ratio from my records? | |4. Please send me a copy of all my records to this address. | |5. I will occupy the hospital if no response received in 1 week! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 Sounds great. I just dug out the recorded conversation with the endo and was told the AVS was incomplete because the catheter was not in the right location for a reliable output of aldo. And they now want to not even bother to do it again. So, the procedure was done incorrectly and they are now wanting to shift in my care plan instead of doing another AVS properly. Mind boggling. > > Add item 5: > > | > |1. Was the AVS done with ACTH- Adrenocorticotrophic Hormone. yes or no. > | > |2. AVS - what were my numbers? > | > |3. What is my renin to ado ratio from my records? > | > |4. Please send me a copy of all my records to this address. > | > |5. I will occupy the hospital if no response received in 1 week! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 That's what I am screaming about! I was not off of eplerenone before AVS, not one day. They even increased my dosage 3 times. So, I cannot trust to the results of my AVS?! Natalia Kamneva To: hyperaldosteronism Sent: Tuesday, November 1, 2011 11:45 AMSubject: Re: Please some advice? FYI the same would apply to eplerenone - if you are repeating the AVS, you will need to be off of it for a minimum of 4 to 6 weeks. > > > > > > > > > > Your doc might be retarded! Check it out. Doc should not leave you without > > > > > medication with such high bp only for the reason of AVS test. He could at > > > > > least give you some alpha-blockers ...etc. > > > > > > > > > > Max. > > > > > > > > > > | > > > > > |Hello Everyone: > > > > > |I'm feeling pretty helpless at the moment. This is a ten-year journey, with > > > > > the > > > > > |last 2 focused on the Conns > > > > > | > > > > > | Up until today I am moving close to having the adrenalectomy. > > > > > | > > > > > |I have been referred to endo and surgeon in Oxford UK. I had scans, showed > > > > > |an 8mm something on left gland. Did an AVS in April. Met endo in June who > > > > > |said AVS was inconclusive and may need to do again but surgeon would look > > > > > |at AVS results and get back to me. I wrote them last week to find out what > > > > > is > > > > > |going on? Got letter from endo now calling the scans negative and the AVS > > > > > |"non-helpful". > > > > > | > > > > > |I have been diagnosed with mild to moderate left ventricle damage by a > > > > > |cardiologist in August. I have chest pain. He says this is due to lake of > > > > > oxygen > > > > > |due to Conns. kind of like a cramp. > > > > > | > > > > > |I take 3600MG of slow K per day and am off all drugs as I have been waiting > > > > > for > > > > > |the next AVS. My BP is 190/115. I have the whole standard list of symptoms. > > > > > | > > > > > |I am soooo close and I am afraid that I am going to be put in the "don't > > > > > have > > > > > |Conns but we don't know" category. > > > > > | > > > > > |What do I do now? Any advice would be appreciated. > > > > > |Thank you > > > > > | > > > > > |Chris > > > > > | > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
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.