Guest guest Posted November 1, 2011 Report Share Posted November 1, 2011 I assume you are locked into the UK health system and don't have the choice to go anywhere else? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of s 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 See dr Grim's Aldo test in the welcome. You also want to know what was ur urine Na and K when Aldo renin was done. Also ask where he trained. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension 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 Too bad you found us after AVS. THEY are not easy to do. Ann arbor is best in your area. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension 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 2, 2011 Report Share Posted November 2, 2011 I'm not locked in per say, I can go anywhere in the UK, I just have followed what I thought was the best path. I researched where I should go and chose this hospital because they have a special teaching hospital for renal. > > > > 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 2, 2011 Report Share Posted November 2, 2011 In the welcome, you mean " Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day. " Is that correct? > > > > > > > > > > > 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 2, 2011 Report Share Posted November 2, 2011 Did you go to Radcliffe? > > > > > > 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 2, 2011 Report Share Posted November 2, 2011 Yes, I live in Yorkshire, researched Radcliffe in Oxford, got my endo to refer me there. > > > > > > > > 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 2, 2011 Report Share Posted November 2, 2011 Right. In the welcome, you mean "Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day." Is that correct? > > > > > > > > > > > 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 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2011 Report Share Posted November 2, 2011 And read the labels. No salt for us means less than 1500 mg a day of sodium.In most most salt comes from what is added before you buy it not what you add.CE Grim 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 > > > > > > > > > . > > > > > > <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 2, 2011 Report Share Posted November 2, 2011 Glasgow would be the closest expert hospital in PA I think.CE Grim MD I'm not locked in per say, I can go anywhere in the UK, I just have followed what I thought was the best path. I researched where I should go and chose this hospital because they have a special teaching hospital for renal. > > > > 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 2, 2011 Report Share Posted November 2, 2011 It is my understanding that anyone in England can pay for our of system care just as they can here if they want-and have the cash.CE Grim MD I assume you are locked into the UK health system and don't have the choice to go anywhere else? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of s 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 2, 2011 Report Share Posted November 2, 2011 sorry that is closer I had you confused with Faroe Island person.CE Grim MD Yes, I live in Yorkshire, researched Radcliffe in Oxford, got my endo to refer me there. > > > > > > > > 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 2, 2011 Report Share Posted November 2, 2011 Just been told that +50% chance that my AVS (2nd) would be inconclusive. This is radcliffe in Oxford england. Is that normal? Will Glascow be better than that? > > > > > > > > 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 2, 2011 Report Share Posted November 2, 2011 Wonderful info: AVS 50% inconclusive your are left with 50% AVS conclusive...and research indicates when AVS is conclusive it is only 50% conclusive so you are left with AVS conclusiveness of 0.5*0.5=25% conclusive...you better flip a coin, you will have a better chance of diagnosis with that! Max. | | |Just been told that +50% chance that my AVS (2nd) would be inconclusive. |This is radcliffe in Oxford england. Is that normal? Will Glascow be better |than that? | | | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2011 Report Share Posted November 2, 2011 Do a pub med search for primary aldosteronism in UK and look for published articles on LPA. I am not where I can do it now. Will contact dr in UK I KNOW to try to find out. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension Just been told that +50% chance that my AVS (2nd) would be inconclusive. This is radcliffe in Oxford england. Is that normal? Will Glascow be better than that? > > > > > > > > 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 2, 2011 Report Share Posted November 2, 2011 And u wonder why I recommend drugs and DASH and only recommend AVS WHEN these fail. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension Wonderful info: AVS 50% inconclusive your are left with 50% AVS conclusive...and research indicates when AVS is conclusive it is only 50% conclusive so you are left with AVS conclusiveness of 0.5*0.5=25% conclusive...you better flip a coin, you will have a better chance of diagnosis with that! Max. | | |Just been told that +50% chance that my AVS (2nd) would be inconclusive. |This is radcliffe in Oxford england. Is that normal? Will Glascow be better |than that? | | | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2011 Report Share Posted November 2, 2011 Sorry dr. Grim. can anyone explain how to do a pub med search? what is published articles on L PA? Thank you Dr, Grim for contacting your colleague in Uk. > > > > > > > > > > > > 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 2, 2011 Report Share Posted November 2, 2011 I just want to know if it is unilateral so I can see if surgery works, I already have LVH and if surgery can possibly reverse this or may slow or prevent heart disease it maybe worth a shot. My BP has been out of control for at least 10 yrs and my body is now experiencing the stages that lead to heart disease or stroke. > > > Wonderful info: AVS 50% inconclusive your are left with 50% AVS > > conclusive...and research indicates when AVS is conclusive it is only 50% > > conclusive so you are left with AVS conclusiveness of 0.5*0.5=25% > > conclusive...you better flip a coin, you will have a better chance of > > diagnosis with that! > > > > Max. > > > > | > > | > > |Just been told that +50% chance that my AVS (2nd) would be inconclusive. > > |This is radcliffe in Oxford england. Is that normal? Will Glascow be > > better > > |than that? > > | > > | > > | > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2011 Report Share Posted November 2, 2011 Go here: http://www.ncbi.nlm.nih.gov/pubmed/ You will see a search line toward the top. Good Luck. - 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. > > > > > > > > > > > > > > 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 2, 2011 Report Share Posted November 2, 2011 I have/had LVH and it had progressed far enough that I required full time supplemental Oxygen for over a year. 12 weeks after I got PA under control I was surprised to find I no longer required it! Dr. Grim explained that was because the LVH had started to get better so the heart was better able to pump. Just wanted you to know it's reversable whether you choose surgery or meds. - 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. > > > > > Wonderful info: AVS 50% inconclusive your are left with 50% AVS > > > conclusive...and research indicates when AVS is conclusive it is only 50% > > > conclusive so you are left with AVS conclusiveness of 0.5*0.5=25% > > > conclusive...you better flip a coin, you will have a better chance of > > > diagnosis with that! > > > > > > Max. > > > > > > | > > > | > > > |Just been told that +50% chance that my AVS (2nd) would be inconclusive. > > > |This is radcliffe in Oxford england. Is that normal? Will Glascow be > > > better > > > |than that? > > > | > > > | > > > | > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2011 Report Share Posted November 3, 2011 Thank you , more good info to process... > > > > > > > Wonderful info: AVS 50% inconclusive your are left with 50% AVS > > > > conclusive...and research indicates when AVS is conclusive it is only 50% > > > > conclusive so you are left with AVS conclusiveness of 0.5*0.5=25% > > > > conclusive...you better flip a coin, you will have a better chance of > > > > diagnosis with that! > > > > > > > > Max. > > > > > > > > | > > > > | > > > > |Just been told that +50% chance that my AVS (2nd) would be inconclusive. > > > > |This is radcliffe in Oxford england. Is that normal? Will Glascow be > > > > better > > > > |than that? > > > > | > > > > | > > > > | > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2011 Report Share Posted November 3, 2011 Google pubmed and enter PA in UKShould have been Primary Aldosteronism in UK Sorry dr. Grim. can anyone explain how to do a pub med search? what is published articles on L PA? Thank you Dr, Grim for contacting your colleague in Uk. > > > > > > > > > > > > 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 3, 2011 Report Share Posted November 3, 2011 and begin to DASH now like your heart depended on it.CE Grim MD Thank you , more good info to process... > > > > > > > Wonderful info: AVS 50% inconclusive your are left with 50% AVS > > > > conclusive...and research indicates when AVS is conclusive it is only 50% > > > > conclusive so you are left with AVS conclusiveness of 0.5*0.5=25% > > > > conclusive...you better flip a coin, you will have a better chance of > > > > diagnosis with that! > > > > > > > > Max. > > > > > > > > | > > > > | > > > > |Just been told that +50% chance that my AVS (2nd) would be inconclusive. > > > > |This is radcliffe in Oxford england. Is that normal? Will Glascow be > > > > better > > > > |than that? > > > > | > > > > | > > > > | > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2011 Report Share Posted November 11, 2011 Hi, Any luck on finding that contact in Glasgow? I am going to find another hospital with a better AVS success percentage in UK. DR. Grim do you have any suggestions? Thank you Chris > > > > > > > > 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 11, 2011 Report Share Posted November 11, 2011 Dr JM Connell would be my recommendation. He has published a number of papers on PA. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertension Hi, Any luck on finding that contact in Glasgow? I am going to find another hospital with a better AVS success percentage in UK. DR. Grim do you have any suggestions? Thank you Chris > > > > > > > > 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...
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