Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Hi Phyllis, My MPV, mean platelet volume was always low, nobody seemed concerned and I didn't find much on it six years ago, may be more stuff now, Good luck, Connie, MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2000 Report Share Posted January 21, 2000 Trish, It is a tricky situation , due to low platelets you cannot have the usual liver biopsy but only by transjugular route. It is not essential but will be able to predict the overall outcome of the disease. If you do not have ascites, you should go ahead with therapy if the platelets increase following transfusion. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2000 Report Share Posted January 22, 2000 What are ascites and varices? I have read some and can't get any description or hints from the context used in. Dawn --- Doc <gidoc@...> wrote: > From: " Doc " <gidoc@...> > > Trish, > It is a tricky situation , due to low platelets > you cannot have the > usual liver biopsy but only by transjugular > route. It is not essential > but will be able to predict the overall outcome > of the disease. > If you do not have ascites, you should go ahead > with therapy if the > platelets increase following transfusion. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2000 Report Share Posted January 22, 2000 What are ascites and varices? I have read some and can't get any description or hints from the context used in. Dawn --- Doc <gidoc@...> wrote: > From: " Doc " <gidoc@...> > > Trish, > It is a tricky situation , due to low platelets > you cannot have the > usual liver biopsy but only by transjugular > route. It is not essential > but will be able to predict the overall outcome > of the disease. > If you do not have ascites, you should go ahead > with therapy if the > platelets increase following transfusion. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2000 Report Share Posted January 22, 2000 These are signs of Cirrhosis. Varices are engorged veins which develop at the lower end of food pipe and stomach in response to increased blood flow in the liver and development of extra veins. They have a propensity to bleed and thus need to be treated. Ascites is filling up of fluid in the abdomen due to chronic liver failure. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2000 Report Share Posted January 25, 2000 Yes, you should have had all the tests done to find out if you had varices or ascites. Get them done soon if they havent been done already and you have not been told of the results. Dr S C Misra Re: platelets From: Curlykew <curlykew12@...> So how do i know if have ascites or varices? Should GI have checked this out before putting me on combo? bleeding...would that appear when blow nose and in saliva when spit? And how do I know if have fluid in stomach...guess these are all questions i need to ask my GI, huh? Too bad is so hard to get ahold of him. Beginning to realize how little he has done for me. Dawn --- Doc <gidoc@...> wrote: > From: " Doc " <gidoc@...> > > These are signs of Cirrhosis. > Varices are engorged veins which develop at the > lower end of food pipe > and stomach in response to increased blood flow > in the liver and > development of extra veins. They have a > propensity to bleed and thus > need to be treated. > Ascites is filling up of fluid in the abdomen > due to chronic liver > failure. > > Hope this helps. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2000 Report Share Posted January 25, 2000 Yes, you should have had all the tests done to find out if you had varices or ascites. Get them done soon if they havent been done already and you have not been told of the results. Dr S C Misra Re: platelets From: Curlykew <curlykew12@...> So how do i know if have ascites or varices? Should GI have checked this out before putting me on combo? bleeding...would that appear when blow nose and in saliva when spit? And how do I know if have fluid in stomach...guess these are all questions i need to ask my GI, huh? Too bad is so hard to get ahold of him. Beginning to realize how little he has done for me. Dawn --- Doc <gidoc@...> wrote: > From: " Doc " <gidoc@...> > > These are signs of Cirrhosis. > Varices are engorged veins which develop at the > lower end of food pipe > and stomach in response to increased blood flow > in the liver and > development of extra veins. They have a > propensity to bleed and thus > need to be treated. > Ascites is filling up of fluid in the abdomen > due to chronic liver > failure. > > Hope this helps. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2000 Report Share Posted January 25, 2000 Yes, you should have had all the tests done to find out if you had varices or ascites. Get them done soon if they havent been done already and you have not been told of the results. Dr S C Misra Re: platelets From: Curlykew <curlykew12@...> So how do i know if have ascites or varices? Should GI have checked this out before putting me on combo? bleeding...would that appear when blow nose and in saliva when spit? And how do I know if have fluid in stomach...guess these are all questions i need to ask my GI, huh? Too bad is so hard to get ahold of him. Beginning to realize how little he has done for me. Dawn --- Doc <gidoc@...> wrote: > From: " Doc " <gidoc@...> > > These are signs of Cirrhosis. > Varices are engorged veins which develop at the > lower end of food pipe > and stomach in response to increased blood flow > in the liver and > development of extra veins. They have a > propensity to bleed and thus > need to be treated. > Ascites is filling up of fluid in the abdomen > due to chronic liver > failure. > > Hope this helps. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2000 Report Share Posted January 25, 2000 Yes, you should have had all the tests done to find out if you had varices or ascites. Get them done soon if they havent been done already and you have not been told of the results. Dr S C Misra Re: platelets From: Curlykew <curlykew12@...> So how do i know if have ascites or varices? Should GI have checked this out before putting me on combo? bleeding...would that appear when blow nose and in saliva when spit? And how do I know if have fluid in stomach...guess these are all questions i need to ask my GI, huh? Too bad is so hard to get ahold of him. Beginning to realize how little he has done for me. Dawn --- Doc <gidoc@...> wrote: > From: " Doc " <gidoc@...> > > These are signs of Cirrhosis. > Varices are engorged veins which develop at the > lower end of food pipe > and stomach in response to increased blood flow > in the liver and > development of extra veins. They have a > propensity to bleed and thus > need to be treated. > Ascites is filling up of fluid in the abdomen > due to chronic liver > failure. > > Hope this helps. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 Hi Debbie, I am in the 45,000 count for platelets. Its low becuase my spleen is over compensating for my liver. I'm told there is no way I will ever be in the normal range. When having surgical procedures done and after significant blood loss I am usually given a platelet transfusion and those are used up within the hour. I'm a childs-A cirrhosis category for my liver if this helps. Why are your platelets so low? Jen On Fri, 23 Feb 2001 15:09:44 -0000, wrote: > Went to the Hematologist yesterday (internist referred last December > due to platelet count being low). In December it was 88 (88,000). > Yesterday it was 75 (not the right direction). Normal is 150-450. > Has anyone else had low platelet problems? pre or post > medication/treatment? I don't know what a dangerously low level is. > Any help would be appreciated. Debbie OH > _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2001 Report Share Posted February 23, 2001 Hi Jen! I am new to the group so don't know what everyone's liver situation is, but I have AIH & Hep C, observation only, no treatment for about 10 years. I have some fibrosis & cirrhosis per old biopsy. My spleen & liver are slightly enlarged & some elevation of labs. I am hoping Cleveland Clinic will tell me why platelets are low & that it isn't some new illness. PT & PTT are normal.I always seem to have a relapse of sorts in the late Fall & it continues into the Spring when my allergies get bad. I don't know my category for cirrhosis... Are you on meds? Do you have any special problems or cautions with your platelet level? Thanks, Debbie OH > > > Went to the Hematologist yesterday (internist referred last December > > due to platelet count being low). In December it was 88 (88,000). > > Yesterday it was 75 (not the right direction). Normal is 150-450. > > Has anyone else had low platelet problems? pre or post > > medication/treatment? I don't know what a dangerously low level is. > > Any help would be appreciated. Debbie OH > > > > > > > > _______________________________________________________ > Send a cool gift with your E-Card > http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2001 Report Share Posted February 26, 2001 Debbie, I forget where I am at a far as PT (bleeding time) but I have to be very careful not to take things that will thin my blood. No asprin, no motrin or Ibuprophen. No garlic in large doses, no Ginko etc. I suffer from esophogeal bleeds and recently had a TIPS (shunt) placed as a last ditch effort to control the bleeding that would happen every 2-6 weeks unexpectedly. I take 10 mg prednisone and will soon be taken off that and put on imuran alone but were trying to get my acne under control first as the imuran causes me to have severe breakouts. I should get my most recent labs today or tomorrow, I will let you know if there is anything significant with regard to my platelets etc. thanks, Jen On Fri, 23 Feb 2001 19:48:58 -0000, wrote: > Hi Jen! > > I am new to the group so don't know what everyone's liver situation > is, but I have AIH & Hep C, observation only, no treatment for about > 10 years. I have some fibrosis & cirrhosis per old biopsy. My spleen > & liver are slightly enlarged & some elevation of labs. I am hoping > Cleveland Clinic will tell me why platelets are low & that it isn't > some new illness. PT & PTT are normal.I always seem to have a relapse > of sorts in the late Fall & it continues into the Spring when my > allergies get bad. I don't know my category for cirrhosis... > > Are you on meds? Do you have any special problems or cautions with > your platelet level? Thanks, Debbie OH > > > > > Went to the Hematologist yesterday (internist referred last > December > > > due to platelet count being low). In December it was 88 > (88,000). > > > Yesterday it was 75 (not the right direction). Normal is 150-450. > > > Has anyone else had low platelet problems? pre or post > > > medication/treatment? I don't know what a dangerously low level > is. > > > Any help would be appreciated. Debbie OH > > > > > > > > > > > > > > > _______________________________________________________ > > Send a cool gift with your E-Card > > http://www.bluemountain.com/giftcenter/ > _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2001 Report Share Posted February 26, 2001 Hi Debbie OH: There are so many people in the group now I don't know if we have talked or not. My daughter, Jodi has AIH and was put on the transplant list at Christmas. She was diagnosed this month was a year a go and the meds just haven't worked for her as far as the lab numbers go. Her platelets have not been over 50,000 since she was in the hospital a year ago. As a matter of fact we would love to see them stay at 50,000 but they are usually around 32,000. My mother also has an autoimmune disease called ITP and hers has been as low as 18,000. Thank God the Prednisone is finally working for her and they are staying around 100,000 for now. I don't know why most people in the group don't have a problem with their platelets but I have been here almost a year and don't hear much about it. I am trying to be Jodi's living donor and am going through testing at the present. I had three done last Friday at the University of Miami. It will be a while before we know anything. I hope I have helped in some small way but know your not alone. Take care and God bless. Genny/Jodi's Mom/Transplant List Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 Jen, you are getting enough calcium, aren't you? The falling-out-tooth worries me a bit. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 Debbie, I had platelet transfusions twice. The last was for the placement of my TIPS shunt. My platelet count is around 85,000. It (platelets)look like yellow jello. The procedure your having done usually has to be done immediately after receiving the transfusion as the platelets are used up within one hour. I was transfused while being wheeled to the OR. The transfusion always makes me very very COLD, to the point that I can't control my shivering. They had to use a hot fan blowing up my gown and blanket while in the OR preping to keep me warm. I recently needed a tooth extraction and my gastro didn't see the need for any antibiotics or transfusion prior to the event. Fortunately for me........... the honker of a tooth just fell out before I could keep the appointment. Hope this helps, Jen On Thu, 08 Mar 2001 03:32:26 -0000, wrote: > Thanks ! > > My platelets are 75,000. I am not on any meds.I also take an > antibiotic before Dentist-my internist has always suggested that for > possible mitral valve prolapse. I have never had a platelet > transfusion-what is that like? Debbie OH > > > > > Welcome to the new people, great to hear of the successes and > > prayers > > > to Jodi, , Tommy and the others who need our support. > > > > > > I have a quick question. I have a horrific toothache right now > but > > am > > > afraid to go to a dentist because of my low platelets, possible > > > bleeds and liver failure. I'm afraid of invasive procedures, meds > > and > > > other stuff they might use. To make matters worse, my Dentist is > a > > > business associate who is unaware of my illness so I would have > to > > > find someone else. Any ideas from the group? > > > > > > Take care, > > > > > > Debbie OH > _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 Thanks- I remember growing up trying to loosen a tooth for the tooth fairy visit-might have to go back into my childhood! Debbie OH > > > > Welcome to the new people, great to hear of the successes and > > > prayers > > > > to Jodi, , Tommy and the others who need our support. > > > > > > > > I have a quick question. I have a horrific toothache right now > > but > > > am > > > > afraid to go to a dentist because of my low platelets, possible > > > > bleeds and liver failure. I'm afraid of invasive procedures, meds > > > and > > > > other stuff they might use. To make matters worse, my Dentist is > > a > > > > business associate who is unaware of my illness so I would have > > to > > > > find someone else. Any ideas from the group? > > > > > > > > Take care, > > > > > > > > Debbie OH > > > > > > > > _______________________________________________________ > Send a cool gift with your E-Card > http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 Harper, oh this tooth has been needing to come out for years. Decay etc. To be honest, I have never seen roots that big on a tooth. I probably have never gotten enough calcium, and being lactose intollerant doesn't help. I know milk is a good source, but somewhere down the line in my child hood, I can't EVER remember having a glass of milk. I may have had a spoiled glass or something at some time that has caused me to not desire milk, I don't know. Other then offering me a million dollars, I won't drink it. I eat yogurt, ice cream (despite the lactose thing), and I love spinach. I should probably take supplements being on prednisone but I don't. I really should think more about it. Its hard to do, since other then a lost tooth doesn't make me think about the long term down the road, gettin old scenario and so my need for calcium is lost in other day to day things that I can actually see a difference with. Make any sense? One thing that has stuck in my mind with regard to calcium is that about 5 years ago or so I heard a study about women with Grey hair. Those who greyed early were more likely to have osteoperosis. I started greying by the time I was 20. So it got me thinking. Ever hear of this? Thanks, Jen On Wed, 7 Mar 2001 23:27:55 EST, wrote: > Jen, you are getting enough calcium, aren't you? The falling-out-tooth > worries me a bit. > Harper _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 There should be someone at UCLA who does the lap surgery. The Dr. To see there is Dr. Willa Hseuh who is the chair or Endocrin and HTN. Tell her I referred you-I know her well. She can do the genetic and other tests to determine exactly what the problem is. Or she will have an associate who can do this. I may retire back to LA and set up shop as an expert in HTN on a cash basis and this would save many from going through the problems you have. No one "just has a low K". As far as the platelets problem what other drugs are you on? Almost any drug can do this. Please list them all including anything you take over the counter or herbs or magic potions, etc. Get the DASH diet book ( ) at any book store and begin it immediately-the 14 day challenge diet, tell your Dr. what you are doing and work with them. This will help the BP and the K. Give him a copy of the book if they do not know about it. Also go to nhlbi.nih.gov and download the 19 page doc about the DASH. Keep us posted on what's going on. Some more questions: 1. How long have y ou had HTN and how long has the K been low? 2. How low has the K gotten? 3. Have you had any adrenal scans or adrenal vein sampling? 4. Have you had a dexamethasone suppression test to see if you also suppresses? 5. How much aldact are you on and how much as it helped the BP and the K. 6. Have you had muscle aches and cramps? 7. Do you have to get up at night to pass water? How many times and how long has this been going on? To Helen: I would like to work with you to set up a standard form on your site for persons to fill out that will help us analyze the problem and also we can collect the data so we can give feedback on how many folks with PA these days are having various symptoms. It would be good if this could be set up in a database with good security. I prefer Filemaker Pro which works on both MAC and PC and can be set up on web but I don't know how to do it. We will need to get participants permission and not store names, etc. Will set up a code for each person. Any thoughts from BPline folks also encouraged. Please get all of your renin and aldosterone results and keep them in your file and let us look at them if you don't mind. Also all Ks and BPs and dates. In a message dated 7/15/03 10:59:14 PM, vatjedmw@... writes: Hi! Does anyone know whether this condition or the Spironolactone,or other meds can cause your platelet count to drop? I was diagnosed with a tumour on my left adrenal gland about a month ago. I had spent 2 months with a Dr who kept telling me to take potassium supplements, and that perhaps I was just one of the rare people who simply had low potassium. Thankfully my son's paediatrician told me I needed a better Dr and gave me her Dr's name. She ordered the tests the first visit. My lab tests in April showed a platelet count of 159 and my lab tests from last week showed a count of 87. My Dr. wasn't sure if it could be the Spironolactone and has ordered the test done again this week. Now to find a surgeon who knows what they are doing. The surgeon I was referred to had done 15-20 adrenalectomies and when I asked how many laparoscopic adrenalectomies he had done replied that he had very small experience. He is in his mid-fifties. I am trying to find surgeons at UCLA or Cedars Sinai in Los Angeles who might have more experience. My Dr. also suggested I look at Scripps in San Diego. The health system here can be scary. Thank goodness that we have good insurance at the moment. Helen, I found your paper first and think it is an excellent document. I have found so much useful information here, that the Doctors I have seen haven't known. I am very grateful that you set this up. Thank you. May your pressure be low! CE Grim, BS (Chem/Math), MS (Biochem), MD. Professor of Medicine and Epidemiology Board Certified in Internal Medicine, Geriatrics and Hypertension Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 There should be someone at UCLA who does the lap surgery. The Dr. To see there is Dr. Willa Hseuh who is the chair or Endocrin and HTN. Tell her I referred you-I know her well. She can do the genetic and other tests to determine exactly what the problem is. Or she will have an associate who can do this. I may retire back to LA and set up shop as an expert in HTN on a cash basis and this would save many from going through the problems you have. No one "just has a low K". As far as the platelets problem what other drugs are you on? Almost any drug can do this. Please list them all including anything you take over the counter or herbs or magic potions, etc. Get the DASH diet book ( ) at any book store and begin it immediately-the 14 day challenge diet, tell your Dr. what you are doing and work with them. This will help the BP and the K. Give him a copy of the book if they do not know about it. Also go to nhlbi.nih.gov and download the 19 page doc about the DASH. Keep us posted on what's going on. Some more questions: 1. How long have y ou had HTN and how long has the K been low? 2. How low has the K gotten? 3. Have you had any adrenal scans or adrenal vein sampling? 4. Have you had a dexamethasone suppression test to see if you also suppresses? 5. How much aldact are you on and how much as it helped the BP and the K. 6. Have you had muscle aches and cramps? 7. Do you have to get up at night to pass water? How many times and how long has this been going on? To Helen: I would like to work with you to set up a standard form on your site for persons to fill out that will help us analyze the problem and also we can collect the data so we can give feedback on how many folks with PA these days are having various symptoms. It would be good if this could be set up in a database with good security. I prefer Filemaker Pro which works on both MAC and PC and can be set up on web but I don't know how to do it. We will need to get participants permission and not store names, etc. Will set up a code for each person. Any thoughts from BPline folks also encouraged. Please get all of your renin and aldosterone results and keep them in your file and let us look at them if you don't mind. Also all Ks and BPs and dates. In a message dated 7/15/03 10:59:14 PM, vatjedmw@... writes: Hi! Does anyone know whether this condition or the Spironolactone,or other meds can cause your platelet count to drop? I was diagnosed with a tumour on my left adrenal gland about a month ago. I had spent 2 months with a Dr who kept telling me to take potassium supplements, and that perhaps I was just one of the rare people who simply had low potassium. Thankfully my son's paediatrician told me I needed a better Dr and gave me her Dr's name. She ordered the tests the first visit. My lab tests in April showed a platelet count of 159 and my lab tests from last week showed a count of 87. My Dr. wasn't sure if it could be the Spironolactone and has ordered the test done again this week. Now to find a surgeon who knows what they are doing. The surgeon I was referred to had done 15-20 adrenalectomies and when I asked how many laparoscopic adrenalectomies he had done replied that he had very small experience. He is in his mid-fifties. I am trying to find surgeons at UCLA or Cedars Sinai in Los Angeles who might have more experience. My Dr. also suggested I look at Scripps in San Diego. The health system here can be scary. Thank goodness that we have good insurance at the moment. Helen, I found your paper first and think it is an excellent document. I have found so much useful information here, that the Doctors I have seen haven't known. I am very grateful that you set this up. Thank you. May your pressure be low! CE Grim, BS (Chem/Math), MS (Biochem), MD. Professor of Medicine and Epidemiology Board Certified in Internal Medicine, Geriatrics and Hypertension Published over 230 research papers, chapters and reviews in the area of high blood pressure: epidemiology, history, endocrinology, genetics and physiology. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 > Helen, I found your paper first and think it is an excellent > document. I have found so much useful information here, that the > Doctors I have seen haven't known. I am very grateful that you set > this up. Thank you. > > > [blushing] Thank you very much but I can't take much credit as I had a lot of help from Bruce in New Zealand and my endocrinologist Dr Pearce. I was just so scared when I found I really was very ill and I had a lot of mis-information that made me even more scared so it seemed a useful thing to put across what happens to patients in that particular UK hospital. Helped me in getting back to normal as well. I'm no medic so can't answer any medical questions though....... Don't blame your doctors too much - this thing is pretty rare. That isn't to say they shouldn't know you have to be sent to a specialist and quickly - NOTHING excuses any professional (and I'm not just talking about medics here) from not admitting ignorance on particular subjects. As I tax professional myself I am very aware of the limits to my knowledge....... Helen in Scotland. __________________________________________________________________________ Join Freeserve http://www.freeserve.com/time/ Winner of the 2003 Internet Service Providers' Association awards for Best Unmetered ISP and Best Consumer Application. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 Dera Dr Grim, I like the idea of the database but would need to find out how to do things as I am no PC expert..... I have just done a Microsoft Access course though! There are a couple of issues which may cause problems though - I (for one) don't have all my results as it is not routine here for the patient to be given them. My file may be in Newcastle or may now be in Edinburgh (still no follow up appointment), my GP also wouldn't have the test results as hospitals don't send them to the Drs either unless it is requested. There is also the problem of some results being in metric units and others in imperial. Have a good weekend. Helen in a very warm and humid Scotland __________________________________________________________________________ Join Freeserve http://www.freeserve.com/time/ Winner of the 2003 Internet Service Providers' Association awards for Best Unmetered ISP and Best Consumer Application. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 -- CE Grim MD Access would work too I think. I will ask my son and we can work on it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2003 Report Share Posted July 18, 2003 Hi Mr or Mrs new patient- I specialize in difficult to control high blood presssre and have been doing so since 1964. I am going to spend 20-30 minutes with you discussing the history of your HTN problem in great detail and will focus on questions that may suggest what is causing your high blood pressure. Then I will do a detailed physcial exam looking for clues to unusual causes of high blood pressure. I will then discuss my findings with you and I will likely order some speical tests of blood and urine to look for rare causes of HTN. I may also recommend some special x-ray tests. Here is what I then tell my patients: I can't make you a doctor but I am going to make you a very good BP doctor. You will have many Drs. in your life. The more you know about HTN and how to treat it the healthier you will be and you can even teach any new doctors how to do it right. Here is what I want you to do: 1. Learn to take your own BP. If you do not own a device then purchase one and we will be certain it is accurate on you. If you take your own BP already I will check your device to be sure it is accurate on you. If you cannot afford to buy a device ask a friend or relative to give you one for your birthday (or Christmas or what ever is the next holiday--tell them this will help you be here for your next birthday. Or look at your most expensive pair of shoes. Ifyou spend this much to protect you feet why can't you spend this much to protect your brain, blood vessels, heart and kidney. 2. Take you BP in the AM before you take your meds and then any other time you want to take it. Especially if you think it is up. Many patients believe the can tell when it is up and will only meds when they feel it is up. Before you take it, write down what you think it is going to be. You will likely learn you cannot tell if it is up or down. You can only tell if it is up by measureing it. 3. When you take your BP: sit for 5 min is a straigh backed chair with your feet flat on the floor. After timing 5 minutes (and Iknow this is hard) take 3 readings. Write each one down and then take the next one as soon as you have written donw the previous one. Take at last 3 readings. Throw out the first, it is almost always the highest one at that time. Average the last 2 and this is your BP at his time. 4. KEEP YOUR OWN MEDICAL RECORD: Get yourself a spiral notebook (or some prefer a loose leaf) that you can easily carry with you to your health care visits and when you travel. Begin to keep your own medical record. Start as far back as you can go. On one page list meds you have been on and how they worked or did not work. On another page list all of the tests you have had and the exact results: esp studies of the kidneys or adrenals and renin and aldosterone levels. At each Dr. visit ask the health care team to write down what they want you to do. Be sure you can read their writing and understand. Keep you BPs, Sugars (if needed), weight etc in this record and keep a separate page to record you cholesterols, HbA1c (if you have DM), plasma potassium and creatinine, monthly weights and if you can your average BP for the month. You may wnat to keep copies of all xrays etc that have been done. Show all of this to your health care team when you visit. Record the BPs taken in the Drs office as well. They will almost alwasy be higer than your home BPs. Your goal BP is to get the systolic BP below 135 on the average at home. I and others note that the home BP tends to be about 5 mm lower than in the office. Your office goal should be less thatn 140 if it is taken by a trained and certified person and done according to AHA guideines. See our consumers guide at blodpressureline and our pointer to the AHA guidelines so you can be sure your health care team is measuring up. You may want to order the instruction video: Taking your own blood pressure-a skil for Life from sharedcare!aol.com Be cetain your health care team checks you device every 6 months. If they do not know how they have the contact Sharecare@... to get the videotutored course on how to do this. They or you may be interested in becoming a certified trainer. 5. Keep a list of questions to ask at the next visit. Check them off as they are answered and carry them over if they cannot all be answered at each visit. 6. Get the book DASH Diet for Hypertension by . Read this and follow it like your life depended on it! Following this eating pattern will markedly reduce the number of meds you may need take. Because BP runs in families now is the time to begin to transmit this eating pattern to your descendents and even to your parents or grandparent who gave you these genes. Unfortuanely in many HTN familes these kin are already gone and went at an early age. Be sure to tell you health care team you are doing this as your BP may fall remarkably and you will need to work with them to taper your meds. 7. Take to your health care team and read the DASH book and decide if you can lower your BMI (weight). This may also help your BP. 8. Some folks have a BP that is alcohol sensitive. If they have more than 2 drinks a day (men) or one a day (women) this may be increasing their BP. You can test if you are alcohol sensitive by cutting donw and seeing what happens to yuur BP. 9. If you smoke figure out a way to quit. I used to smoke and know how hard it is but stopping is the single most healtly thing you can do. Smoking a pack a day may be the cause of your increased BP and at $5 per pack it costs more to smoke that to buy BP and heart pills. Those who contiue to smoke may not gain from the proven benefits of haveing your BP lowered. 10. Do not expect to have your BP controlled by only one pill. By the time you get to me most will need at least 2 and the average is 4 different types of BP pills to control your pressure. It may take us a year to find the combination that gets you to goal with you feeling well. In all likelyhood I will start you on or add hydrocholorothiazide if you are not on it. I will ask you to buy this rather than have your insurance company do it as it will only cost you $9 for 100 pills and we will start with 1/2 of a 25 mg each AM. I will likely provide you with samples if they are available until we can find the right med for you. If you pay for all of your meds I recommend you buy bottles of 100 at a time as this is much cheaper and you dont have to run back every 30 days to the drug store. The good news is that that you and I can almost always get the BP to goal if we work on it. 11. I can tell if your BP is up by looking at your BPs. Only you can tell me if you are having side effects or not feeling well because of the medications. 12. See 6 if we have not gotten your BP to goal in the next 3 months. 13. I am going to have you collect a 24 hour urine to measure how much sodium and potassium you are eating. This is the only way to see if you are on the DASH diet. Especially if your BP did not improve some on the DASH. 14. Learn as much about high blood pressure as you can. I recommend you consider getting and reading through the Hypertension Primer by the American Heart Association ($35)which contains what we want medical students to know when they finish medical school. Read a 2 page chapter every week night and you will be done in about a year. You will know more than most doctors about high blood pressure. If you are still interested get the book by Dr. Normal Kaplan, Clinical Hypertension and read what you can. You can get this though your local medical library or by it-but it costs about #100. You may also want to read " The Hunger for Salt " by Denton. You will likely need to get this on inter lib loan. Another resource is Guyton and Hall's Textbook of Physiology. Most lib will have this. 15. If you are not on the web yet get with the program! Look at our site bloodpressureline and see if this fits your style. There are some world class experts on HTN here and most are patients. I monitor this but you will find they are superbe at helping you get your BP to goal. 16. If you are a member of the African Diaspora, learn as much as you can about the history of slavery to understand your Roots and how to feed them. Focus on how tough folks had to be to survive this holocaust-you are a genetic and cultural descendent of this history. Read the Pathophysiology of Hypertension in Blacks by Frey and -especially the chapter on the physiology of survial during slavery that I co-authored. 17. There is about a 30% chance that the tests we will run on you will turn up an ususual cause of high blood pressure that will require specific meds and make your BP easier to control. I have had many patients come to me on 10 meds a day and we end up with only one or two. 18. Once we are sure your BP readings are OK I will encourae you to experiment with your meds until we find a program that works. This may mean taking some in the am and some in the PM. You are the best judge of how the pills are affecting you. If they are making you feel bad we will change till we find the righ combo. 19. Once we have gotten you to be a pretty good BP doctor I will not likely need to see you anymore unless the BP gets out of control again. I would like the other experienced folks in our group to edit this summary and suggest things that may need to be aded or deleted. AFter editing etc, we may want to put this on our site as " Advice from a long time hypertension specialist: How to feed and care for your genome and how to train your doctor to take care of your BP. May your pressure be low! CE Grim MD In a message dated 7/18/2003 3:47:38 AM Eastern Standard Time, Helen@... writes: > Helen, I found your paper first and think it is an excellent > > document. I have found so much useful information here, that the > > Doctors I have seen haven't known. I am very grateful that you set > > this up. Thank you. > > > > > > > > > [blushing] > > > Thank you very much but I can't take much credit as I had a lot of help from Bruce in New Zealand and my endocrinologist Dr Pearce. I was just so scared when I found I really was very ill and I had a lot of mis-information that made me even more scared so it seemed a useful thing to put across what happens to patients in that particular UK hospital. Helped me in getting back to normal as well. I'm no medic so can't answer any medical questions though....... > > Don't blame your doctors too much - this thing is pretty rare. That isn't to say they shouldn't know you have to be sent to a specialist and quickly - NOTHING excuses any professional (and I'm not just talking about medics here) from not admitting ignorance on particular subjects. As I tax professional > myself I am very aware of the limits to my knowledge....... > > Helen in Scotland. CE Grim MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 My problem in putting things into the database would be lack of test results as in the UK you have no automatic right to access your results, and they are not given to you as a matter of routine. You never get copies of x-rays etc. and I did ask for a copy of the CT scan but it was not given to me as the surgeon needed it to plan the surgery and it was discarded afterwards even though I had asked for it to be kept! I know Simon Pearce will let me have the results from the tests in Newcastle but I have no right to look at the paper records in my GP's surgery. However I do think the database would be a great research tool and will ask Simon for his input if you wish. My surgeon (Professor Tom Lennard) does 3 or 4 adrenalectomies a year in Newcastle for PA and more for other conditions such as Cushings of course. Let me know what you want to do. Our health care system is so different to yours that I am not really sure if we would be able to co-ordinate the results but we can try! I do know that we are not told what our blood tests are for - the blood is just taken by the technician. I have asked before what they are testing for and have been told " salt balances " or " iron count " . Of course the technicians only know which tests have been ordered so don't know what is being screened and the specialists often don't see you themselves but have medical student run the basic tests. Helen Original Message: ----------------- From: lowerbp2@... Date: Fri, 18 Jul 2003 14:03:12 -0400 hyperaldosteronism Subject: Re: Re: Platelets -- CE Grim MD Access would work too I think. I will ask my son and we can work on it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 In a message dated 7/21/03 10:25:40 AM, Helen@... writes: << Let me know what you want to do. Our health care system is so different to yours that I am not really sure if we would be able to co-ordinate the results but we can try! >> Sounds like you may be a force for change? I find it hard to believe that you cannot get your own health information. I think the database would also be a great idea. We do not need all of the data but would encourage all to enter what they have. We could also develop a form that they could take to the Dr. to have the information recorded. We still need to think about this some more. I would prefer to use Filmmaker Pro as the database as I know that one very well and it can be set up on the Internet. We will need to give every one a code that they choose as their own ID so the data will be confidential. Here would be some basics. Your code number which you can select and will be unique. Age, gender Age of onset of HTN. Age of Dx of low K K A box for a narrative of how the diagnosis was finally arrived at and the trials and tribulations that occurred in getting to the right diagnosis. What meds and dose worked and didn't Family history of HTN, low K Describe problems with cramps that you have had: How many times a night do you get up to urinate. How long has this been a problem? Do you: eat licorice every day? Use any licorice flavored products such as medicines, chewing tobacco or snuff. What happened to your BP during pregnancy? Detailed family pedigree with ages and causes of death as far back as possible. Do you have any short fingers? What was your renin test results? What were your blood and urine aldosterone results? The narrative history would be the most interesting as they can be very profound as I am sure you know. Lets keep thinking on how to do it. Can you keep track of these suggestions and I will think of more. We can also organize them better. I will speak to colleagues as well. Thanks CE Grim MD Quote Link to comment Share on other sites More sharing options...
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