Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 In a message dated 8/7/06 11:20:35 AM, viumber@... writes: I am now on .1 mg of florinef. Could going up from a half of that pill to the whole .1 mg have caused a rise in blood pressure? I guess my Question is could I also have had Conn's in adition to the Cushing's. My electolytes are off sometimes. Can they tell by path report if it was cushing nodules or conn's. I am mixed up! Violet Yes in my experience many Conn's are very sensitive to mineralocorticoid and may not need any. Did you have a blilateral adrenalectomY? The only way to tell what is going on is to measure both renin and aldo and compare to your perop values. I don't recall what your AVS showed? May your pressure be low! C.E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 In a message dated 8/7/06 11:20:35 AM, viumber@... writes: Can they tell by path report if it was cushing nodules or conn's. Not that I am aware of. There are some special ways to measure what the nodules are producing but many dont have th ability to do this. The golden nodules are classic Conn's hyperplasia. May your pressure be low! C.E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 Dr Grim, Yes I had a bilateral adrenalectomy. Can the aldo be measured after the adrenals are gone. My renin was only .15 up to .38 before surgery. I'm sorry i don't remember what AVS is?? Violetlowerbp2@... wrote: In a message dated 8/7/06 11:20:35 AM, viumber writes: I am now on .1 mg of florinef. Could going up from a half ofthat pill to the whole .1 mg have caused a rise in blood pressure?I guess my Question is could I also have had Conn's in adition to theCushing's. My electolytes are off sometimes. Can they tell by pathreport if it was cushing nodules or conn's. I am mixed up! VioletYes in my experience many Conn's are very sensitive to mineralocorticoid and may not need any.Did you have a blilateral adrenalectomY?The only way to tell what is going on is to measure both renin and aldo and compare to your perop values. I don't recall what your AVS showed?May your pressure be low!C.E. Grim, B.S., M.S., M.D.Specializing in Difficult to Control High Blood Pressureand the Physiology and History of Survival DuringHard Times and Heart Disease today. Groups are talking. We´re listening. Check out the handy changes to . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 In a message dated 8/7/06 1:42:41 PM, viumber@... writes: Dr Grim, Yes I had a bilateral adrenalectomy. Can the aldo be measured after the adrenals are gone. My renin was only .15 up to .38 before surgery. I'm sorry i don't remember what AVS is?? Violet Adrenal vein sampling to determine if you have a one side or both sides problem. If you have had a bilateral ADX then they should not be able to measure aldo unless you have another adenoma someplace else. They can occur in the ovary or even in the brain. That renin seems low to me which would mean you are on too much salt or too much flourinef or too much of both.. May your pressure be low! C.E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 In a message dated 8/7/06 1:42:41 PM, viumber@... writes: Dr Grim, Yes I had a bilateral adrenalectomy. Can the aldo be measured after the adrenals are gone. My renin was only .15 up to .38 before surgery. I'm sorry i don't remember what AVS is?? Violet Ask your Mayo Drs what level of renin they would like you to have. May your pressure be low! C.E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 In a message dated 8/7/06 1:42:41 PM, viumber@... writes: Dr Grim, Yes I had a bilateral adrenalectomy. Can the aldo be measured after the adrenals are gone. My renin was only .15 up to .38 before surgery. I'm sorry i don't remember what AVS is?? Violet I trust they gave you a detailed handout and training on how to take care you yourself now that you have no adrenals. You should always carry a syringe loaded with cortisone in case you have an accident you should get an injection immediately. You should also have a bracelet and infor in your purse that states you have had an adrenalectomy. May your pressure be low! C.E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 In a message dated 8/7/06 1:42:41 PM, viumber@... writes: Dr Grim, Yes I had a bilateral adrenalectomy. Can the aldo be measured after the adrenals are gone. My renin was only .15 up to .38 before surgery. I'm sorry i don't remember what AVS is?? Violet Trust you are on cortisone as well. If you had a total Bilat ADx you will need cortisone or prednisoe every day for the rest of your life. You should stock pile an 30 day supply in case of a disaster such as a hurricane etc. May your pressure be low! C.E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 In a message dated 8/8/06 10:33:48 AM, toniab_13@... writes: Micronodules? Dr. Grim, can you talk about these a little more? I have oftened wondered if, although my adrenals look normal, that there isn't something the MRIs haven't caught because my bp is so high. Should I talk to my doctor about micronodules becuase we've never talked about them? How do you find them if the MRI doesn't really see them? Do you have any articles or information that I can read and share with my doctor about patients with micronodules? Tonia read my paper in our files and take to your Dr. I only think about micronodules or small nodules when I cannot control BP and K with MCA (mineralocorticoid antagonists) and DASH. Then can only be Dx at surgery and you dont want that unless all else fails. May your pressure be low! C.E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 In a message dated 8/8/06 10:31:24 AM, viumber@... writes: I had the IPSS test. You see most of the testing had to do with cortisol. I have a bracelet and a syringe and meds in my purse and hope I never have to use it. I had an adrenal crisis a year ago and ended up in the hospital. Was given hydrocortisone and saline and lots of antibiotics and potassium. The Endo I am now seeing insists that it was because the aldo went low I believe. Either way cortisol or aldo was the culprit. But my potassium went low and sodium went high which is just the opposite of cushing's. This is classic Conn's: low K and high Na. what was the crisis? Cushing's crisis can have low K but not high Na, Did you have low BP or high BP at the time. I had confirmed Cushings which really throws things off. I swelled up so bad after hospital I could barely walk for a couple months and finally nephrologist put me on Triam/HCTZ which took the swelling down and blood pressure came under control in a couple days. I truly believe I had or have Conn's too. Since my blood pressure came down to normal after surgery I was taken off of this med and now my blood pressure is right back up there. Also the florinef was added. I am on 25 mg of hydrocortisone and 25 mg DHEA too. I will keep persuing getting a renin test. Why is it so hard to get a test run? Violet May your pressure be low! C.E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 In a message dated 8/8/06 10:31:24 AM, viumber@... writes: I had the IPSS test. You see most of the testing had to do with cortisol. I have a bracelet and a syringe and meds in my purse and hope I never have to use it. I had an adrenal crisis a year ago and ended up in the hospital. Was given hydrocortisone and saline and lots of antibiotics and potassium. The Endo I am now seeing insists that it was because the aldo went low I believe. Either way cortisol or aldo was the culprit. But my potassium went low and sodium went high which is just the opposite of cushing's. I had confirmed Cushings which really throws things off. I swelled up so bad after hospital I could barely walk for a couple months and finally nephrologist put me on Triam/HCTZ which took the swelling down and blood pressure came under control in a couple days. I truly believe I had or have Conn's too. Since my blood pressure came down to normal after surgery I was taken off of this med and now my blood pressure is right back up there. Also the florinef was added. I am on 25 mg of hydrocortisone and 25 mg DHEA too. I will keep persuing getting a renin test. Why is it so hard to get a test run? Violet May your pressure be low! C.E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 In a message dated 8/8/06 10:31:24 AM, viumber@... writes: I will keep persuing getting a renin test. Why is it so hard to get a test run? Violet I am sure if you tell them you will pay for it, it can be run. Yod do have a complex problem and would rely on their judgement. Can you send us for our files the writtne instructions they gave you on how to mamage 's? lowerbp2@... wrote: May your pressure be low! C.E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Micronodules? Dr. Grim, can you talk about these a little more? I have oftened wondered if, although my adrenals look normal, that there isn't something the MRIs haven't caught because my bp is so high. Should I talk to my doctor about micronodules becuase we've never talked about them? How do you find them if the MRI doesn't really see them? Do you have any articles or information that I can read and share with my doctor about patients with micronodules? Tonia > > I haven't been on the board for a while. I had cyclical Cushing's but > also had symptoms of Conn's. I had pituitary surgery July of 2004. > Then had adrenal surgery in May of this year. They found 3 bright > yellow micronodules in each adrenal gland and 2 adjacent to one of > them (8 in all). Micronodular hyperplasia! None of these showed on the > adrenal MRI's. My blood pressure and sugar dropped really low after > surgery and is now back UP!! Thru all of my testing my renin has run > extremely low. Aldosterone was always in the normal range. One of my > endos wants a renin test run but for some reason cannot get the reqs > from quest and the other doesn't want to order it because he doesn't > know how the other endo wants it done. Have been waiting almost 2 > months. I am now on .1 mg of florinef. Could going up from a half of > that pill to the whole .1 mg have caused a rise in blood pressure? > I guess my Question is could I also have had Conn's in adition to the > Cushing's. My electolytes are off sometimes. Can they tell by path > report if it was cushing nodules or conn's. I am mixed up! Violet > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 I had the IPSS test. You see most of the testing had to do with cortisol. I have a bracelet and a syringe and meds in my purse and hope I never have to use it. I had an adrenal crisis a year ago and ended up in the hospital. Was given hydrocortisone and saline and lots of antibiotics and potassium. The Endo I am now seeing insists that it was because the aldo went low I believe. Either way cortisol or aldo was the culprit. But my potassium went low and sodium went high which is just the opposite of cushing's. I had confirmed Cushings which really throws things off. I swelled up so bad after hospital I could barely walk for a couple months and finally nephrologist put me on Triam/HCTZ which took the swelling down and blood pressure came under control in a couple days. I truly believe I had or have Conn's too. Since my blood pressure came down to normal after surgery I was taken off of this med and now my blood pressure is right back up there. Also the florinef was added. I am on 25 mg of hydrocortisone and 25 mg DHEA too. I will keep persuing getting a renin test. Why is it so hard to get a test run? Violetlowerbp2@... wrote: In a message dated 8/7/06 1:42:41 PM, viumber writes: Dr Grim, Yes I had a bilateral adrenalectomy. Can the aldo be measured after the adrenals are gone. My renin was only .15 up to .38 before surgery. I'm sorry i don't remember what AVS is?? VioletI trust they gave you a detailed handout and training on how to take care you yourself now that you have no adrenals. You should always carry a syringe loaded with cortisone in case you have an accident you should get an injection immediately. You should also have a bracelet and infor in your purse that states you have had an adrenalectomy.May your pressure be low!C.E. Grim, B.S., M.S., M.D.Specializing in Difficult to Control High Blood Pressureand the Physiology and History of Survival DuringHard Times and Heart Disease today. Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 During the crisis I got very dizzy, my blood pressure dropped to 90's/60's, Nauseus, temp went up to 101, shaking all over, abdominal pain (cramps), So cold. It was July and had to put electric blanket on high and couldn't get warm. I doubled my cortisol but 5 hours later it was still not much better so headed to hospital. My white blood cell count was up but no sign of infection. They kept me in ICU for 24 hrs. Was very sick. As to the written instructions for addisons I guess I really don't have any. Was told if I had some stressors to double or triple the cortisol. If that didn't work and I was going into Crisis to give injection of dex. and get the to hospital ASAP. My husband is pretty well informed of what to do and capable of doing it. I've had 3 crisis and they hit me so fast that I don't even realize it until it is full blown. This was all after pituitary surgery and before adrenal surgery. Since so many of my hormones were either over the top or drop drastically it was a roller coaster ride. Now that is better at least. More evened out. But this salt thing has me concerned . I am unable to drink any soda, gatorade, or even use any salt as my mouth gets extremely salty and I feel queezy like I drank gallons of salt water. Violetlowerbp2@... wrote: In a message dated 8/8/06 10:31:24 AM, viumber writes: I had the IPSS test. You see most of the testing had to do with cortisol. I have a bracelet and a syringe and meds in my purse and hope I never have to use it. I had an adrenal crisis a year ago and ended up in the hospital. Was given hydrocortisone and saline and lots of antibiotics and potassium. The Endo I am now seeing insists that it was because the aldo went low I believe. Either way cortisol or aldo was the culprit. But my potassium went low and sodium went high which is just the opposite of cushing's. This is classic Conn's: low K and high Na. what was the crisis? Cushing's crisis can have low K but not high Na, Did you have low BP or high BP at the time. I had confirmed Cushings which really throws things off. I swelled up so bad after hospital I could barely walk for a couple months and finally nephrologist put me on Triam/HCTZ which took the swelling down and blood pressure came under control in a couple days. I truly believe I had or have Conn's too. Since my blood pressure came down to normal after surgery I was taken off of this med and now my blood pressure is right back up there. Also the florinef was added. I am on 25 mg of hydrocortisone and 25 mg DHEA too. I will keep persuing getting a renin test. Why is it so hard to get a test run? VioletMay your pressure be low!C.E. Grim, B.S., M.S., M.D.Specializing in Difficult to Control High Blood Pressureand the Physiology and History of Survival DuringHard Times and Heart Disease today. Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 this suggests you may be on too much flornef. Did you have the salty taste before ADX? What was the pituitary pathology report? In a message dated 8/8/06 1:44:01 PM, viumber@... writes: But this salt thing has me concerned . I am unable to drink any soda, gatorade, or even use any salt as my mouth gets extremely salty and I feel queezy like I drank gallons of salt water. Violet rghuia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 In a message dated 8/9/06 5:38:26 PM, viumber@... writes: My pituitary path report was that whatever was taken off didn't stain for anything. 3 days after pit surgery my saliva test for cortisol was 11 and next night it was 771. So you didnt have Cushings Syndrome due to a pitutary adenoma. You must have had adrenal Cushing's or they missed the pituitary adenoma. What has your cortisol been after the ADX? May your pressure be low! C.E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 In a message dated 8/9/06 7:42:19 PM, viumber@... writes: There isn't any way to check the cortisol levels now after BLA is there? The IPSS done after pit surgery showed that there was tumor on the opposite side of the pit that had been operated on. So I just need to get an MRI every year. Nothing shows up at this point. That is why they went for the adrenals.But it was probably good that the adrenals are gone if they were causing multiple problems and with all the nodules they would probably never be OK.. I had surgery at Elmbrooke Hospital in Wisconsin. A wonderful hospital and a wonderful surgeon. Violet They can check the urine free cortisol and aldo they should be zero. Can you get us the renin and aldo levels before the surgery? Were they operating on you for Cushing's or Primary Aldo-ie what was the preoperative Dx? It is still not clear to me. May your pressure be low! C.E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 I saw my pcp today as I can never get in to see the endo nor does he return my calls. He (my pcp) took me off florinef for a couple days and then 1/2 pill a day. I had to go in as I got very sick and my blood pressure went extremely high. Got my renin test and also electrolytes checked. My pituitary path report was that whatever was taken off didn't stain for anything. 3 days after pit surgery my saliva test for cortisol was 11 and next night it was 771. High is anything above 4.3. I was having lots of problems with the salty taste and swelling before surgery too but the Triam/ HCTZ was helping with that. I think I probably had Conn's & Cushing's! Am I ever special huh- to have 2 very rare diseases for about 30 years. After surgery I was taken off of this med (the Triam) because my blood pressure went low. But only for a while then it went back up after going to .1 mg of florinef. I hope I can get back to normal. My pcp is very good. Thanks, Violet > > this suggests you may be on too much flornef. Did you have the salty taste > before ADX? > > What was the pituitary pathology report? > > In a message dated 8/8/06 1:44:01 PM, viumber@... writes: > > > > But this salt thing has me concerned . I am unable to drink any soda, > > gatorade, or even use any salt as my mouth gets extremely salty and I feel queezy > > like I drank gallons of salt water. Violet > > > > rghuia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 There isn't any way to check the cortisol levels now after BLA is there? The IPSS done after pit surgery showed that there was tumor on the opposite side of the pit that had been operated on. So I just need to get an MRI every year. Nothing shows up at this point. That is why they went for the adrenals.But it was probably good that the adrenals are gone if they were causing multiple problems and with all the nodules they would probably never be OK.. I had surgery at Elmbrooke Hospital in Wisconsin. A wonderful hospital and a wonderful surgeon. Violet > > > In a message dated 8/9/06 5:38:26 PM, viumber@... writes: > > > > My pituitary path report was that whatever was taken off didn't > > stain for anything. 3 days after pit surgery my saliva test for > > cortisol was 11 and next night it was 771. > > > > So you didnt have Cushings Syndrome due to a pitutary adenoma. You must > have had adrenal Cushing's or they missed the pituitary adenoma. What has your > cortisol been after the ADX? > > > > May your pressure be low! > > C.E. Grim, B.S., M.S., M.D. > Specializing in Difficult to Control High Blood Pressure > and the Physiology and History of Survival During > Hard Times and Heart Disease today. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Hi Violet Welcome to the group in here. I am pleased to meet some one that is a Cush/Conn. It is rare but does happen. Should I presume you had a atch producing pit tumor removed recently? I guess it takes time for results as you adjust to lower hormones. Endos seem to all come from the same mold. They are mean. Yesterday I had a long talk with my Internest about the Endo she referred me to. To my surprise she confirmed every thing to a tea that the other Endo is a bad influence upon the one I see. I was so surprised as it's what I thought as well. When will your labs settle down? I sure hope you get feeling better soon. I have over range aldosterone, testosterone, & DHEA I am watching my cortisol but it is never high. I have swelling going on it is so anoying and salt makes it worse. I am dreding dragging myself back to see the Endo, now that I and Primary care and the careing MD Dr.Grim in this group have done her job for her,I shall see what she does next. ita ita I saw my pcp today as I can never get in to see the endo nor does he return my calls. He (my pcp) took me off florinef for a couple days and then 1/2 pill a day. I had to go in as I got very sick and my blood pressure went extremely high. Got my renin test and also electrolytes checked.My pituitary path report was that whatever was taken off didn't stain for anything. 3 days after pit surgery my saliva test for cortisol was 11 and next night it was 771. High is anything above > 4.3. I was having lots of problems with the salty taste and swelling before surgery too but the Triam/ HCTZ was helping with that. I think I probably had Conn's & Cushing's! Am I ever special huh- to have 2 very rare diseases for about 30 years. After surgery I was taken off of this med (the Triam) because my blood pressure went low. But only for a while then it went back up after going to .1 mg of florinef. I hope I can get back to normal. My pcp is very good. > Thanks, Violet > this suggests you may be on too much flornef. Did you have the salty taste before AD What was the pituitary pathology report? In a message dated 8/8/06 1:44:01 PM, viumber@ writes: But this salt thing has me concerned . I am unable to drink any soda, gatorade, or even use any salt as my mouth gets extremely salty and I feel queezy like I drank gallons of salt water. Violet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 They were operating on me because of cyclical cushings. Weather in a high or low I was very sick. I went to extremes. The salt balance was off too which I don't think fit with the cushings. The one lab report that I found pre surgery was renin .15 with normals of 1.31-3.95 for upright and aldosterone was 9.8 and normals for that were 1.0-16. The ratio for this is not good right? Even though the aldosterone is in the normal range. Can the renin come back into the normal levels after everything else is balanced or is this ability lost forever. Also wondering if the renin is still low now would that mean I would need less florinef? Violet > > > In a message dated 8/9/06 7:42:19 PM, viumber@... writes: > > > > > > There isn't any way to check the cortisol levels now after BLA is > > there? The IPSS done after pit surgery showed that there was tumor > > on the opposite side of the pit that had been operated on. So I just > > need to get an MRI every year. Nothing shows up at this point. That > > is why they went for the adrenals.But it was probably good that the > > adrenals are gone if they were causing multiple problems and with > > all the nodules they would probably never be OK.. > > I had surgery at Elmbrooke Hospital in Wisconsin. A wonderful > > hospital and a wonderful surgeon. Violet > > > > > > > > They can check the urine free cortisol and aldo they should be zero. > > Can you get us the renin and aldo levels before the surgery? Were they > operating on you for Cushing's or Primary Aldo-ie what was the preoperative Dx? > It is still not clear to me. > > > > > > May your pressure be low! > > C.E. Grim, B.S., M.S., M.D. > Specializing in Difficult to Control High Blood Pressure > and the Physiology and History of Survival During > Hard Times and Heart Disease today. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Hi Violet:It is not the high/low of the aldosterone that identifies if you have hyperaldosteronism. It is rather the ratio of Alosterone to renin. Any time the ratio is higher than 25 (or according to mayo clinic higher than 14) you are suspected for having hyperaldosteronism. Your low renin can actually rise once you are taking any aldosterone blocking agent such as Aldoctone, Spironolactoe, or Inspra. Slowly the renin becomes higher thus making the Aldosterone/Renin ratio lower. Are you on any of these medications now? You need to read Dr. Grim's paper in the files on Primary Aldosteronism. Take Care, Farah On 8/11/06, viumber <viumber@...> wrote: They were operating on me because of cyclical cushings. Weather in a high or low I was very sick. I went to extremes. The salt balance was off too which I don't think fit with the cushings. The one lab report that I found pre surgery was renin .15 with normals of 1.31-3.95 for upright and aldosterone was 9.8 and normals for that were 1.0-16. The ratio for this is not good right? Even though the aldosterone is in the normal range.Can the renin come back into the normal levels after everything else is balanced or is this ability lost forever. Also wondering if the renin is still low now would that mean I would need less florinef? Violet>> > In a message dated 8/9/06 7:42:19 PM, viumber@... writes:> > > > > > There isn't any way to check the cortisol levels now after BLA is > > there? The IPSS done after pit surgery showed that there was tumor> > on the opposite side of the pit that had been operated on. So I just> > need to get an MRI every year. Nothing shows up at this point. That> > is why they went for the adrenals.But it was probably good that the> > adrenals are gone if they were causing multiple problems and with> > all the nodules they would probably never be OK.. > > I had surgery at Elmbrooke Hospital in Wisconsin. A wonderful> > hospital and a wonderful surgeon. Violet> > > > > > > > They can check the urine free cortisol and aldo they should be zero. > > Can you get us the renin and aldo levels before the surgery? Were they > operating on you for Cushing's or Primary Aldo-ie what was the preoperative Dx? > It is still not clear to me. > > > > > > May your pressure be low!> > C.E. Grim, B.S., M.S., M.D.> Specializing in Difficult to Control High Blood Pressure> and the Physiology and History of Survival During > Hard Times and Heart Disease today.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Farah, I am not on any aldosterone blocking agent. I have had my adrenals removed. I was on Triam/ HCTZ before surgery to keep my blood pressure and fluid under control and it was doing pretty good. But the med I was put on after surgery is what is causing my problem now I think. It is Florinef, a medicine to replace the aldosterone. Everything is so delicately balanced. My blood pressure is pretty good today after being off florinef for 2 days. Tomorrow I start back on a half dose. Thanks, Violet > > > > > > > > > In a message dated 8/9/06 7:42:19 PM, viumber@ writes: > > > > > > > > > > > > > > There isn't any way to check the cortisol levels now after BLA is > > > > there? The IPSS done after pit surgery showed that there was > > tumor > > > > on the opposite side of the pit that had been operated on. So I > > just > > > > need to get an MRI every year. Nothing shows up at this point. > > That > > > > is why they went for the adrenals.But it was probably good that > > the > > > > adrenals are gone if they were causing multiple problems and with > > > > all the nodules they would probably never be OK.. > > > > I had surgery at Elmbrooke Hospital in Wisconsin. A wonderful > > > > hospital and a wonderful surgeon. Violet > > > > > > > > > > > > > > > > > > They can check the urine free cortisol and aldo they should be > > zero. > > > > > > Can you get us the renin and aldo levels before the surgery? > > Were they > > > operating on you for Cushing's or Primary Aldo-ie what was the > > preoperative Dx? > > > It is still not clear to me. > > > > > > > > > > > > > > > > > > May your pressure be low! > > > > > > C.E. Grim, B.S., M.S., M.D. > > > Specializing in Difficult to Control High Blood Pressure > > > and the Physiology and History of Survival During > > > Hard Times and Heart Disease today. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 Violet, Wow, thanks for the clarification. I guess you are the first person I have gotten to know with both adrenal glands removed. With these kind of pre-op aldo renin numbers did you have an adrenalectomy for cyclical cushings or for having high aldo? Wishing you the best of health. Farah On 8/11/06, viumber <viumber@...> wrote: Farah, I am not on any aldosterone blocking agent. I have had my adrenals removed. I was on Triam/ HCTZ before surgery to keep my blood pressure and fluid under control and it was doing pretty good. But the med I was put on after surgery is what is causing my problem now I think. It is Florinef, a medicine to replace the aldosterone. Everything is so delicately balanced. My blood pressure is pretty good today after being off florinef for 2 days. Tomorrow I start back on a half dose. Thanks, Violet > > >> > >> > > In a message dated 8/9/06 7:42:19 PM, viumber@ writes:> > >> > > > > > >> > > > There isn't any way to check the cortisol levels now after BLA is> > > > there? The IPSS done after pit surgery showed that there was> > tumor > > > > on the opposite side of the pit that had been operated on. So I> > just> > > > need to get an MRI every year. Nothing shows up at this point.> > That> > > > is why they went for the adrenals.But it was probably good that> > the> > > > adrenals are gone if they were causing multiple problems and with> > > > all the nodules they would probably never be OK.. > > > > I had surgery at Elmbrooke Hospital in Wisconsin. A wonderful> > > > hospital and a wonderful surgeon. Violet> > > >> > > >> > > > > > >> > > They can check the urine free cortisol and aldo they should be> > zero.> > >> > > Can you get us the renin and aldo levels before the surgery?> > Were they > > > operating on you for Cushing's or Primary Aldo-ie what was the> > preoperative Dx?> > > It is still not clear to me.> > >> > >> > >> > > > > >> > > May your pressure be low!> > >> > > C.E. Grim, B.S., M.S., M.D.> > > Specializing in Difficult to Control High Blood Pressure> > > and the Physiology and History of Survival During > > > Hard Times and Heart Disease today.> > >> >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 In a message dated 8/11/06 3:18:11 PM, viumber@... writes: he one lab report that I found pre surgery was renin .15 with normals of 1.31-3.95 for upright and aldosterone was 9.8 and normals for that were 1.0-16. The ratio for this is not good right? Even though the aldosterone is in the normal range. You had at least physcioloic aldosteronism-see my article and take it to your Drs. Can the renin come back into the normal levels after everything else is balanced or is this ability lost forever. Yes it can bet to normal and is prob a good way to monitor you Flor Also wondering if the renin is still low now would that mean I would need less florinef? Yes and/or your salt intake too high. Violet May your pressure be low! C.E. Grim, B.S., M.S., M.D. Specializing in Difficult to Control High Blood Pressure and the Physiology and History of Survival During Hard Times and Heart Disease today. Quote Link to comment Share on other sites More sharing options...
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