Guest guest Posted January 20, 2001 Report Share Posted January 20, 2001 Sandy, Do you mind me asking how high your triglycerides were? Mine are high now and going higher. The day before I had acute panc, I had routine lab work done and my triclycerides were around 270. When I saw my current GI the first time in Novemeber, they were 479. He says the triglycerides were what probably caused the panc. However, I don't really think 270 is that high. I've been following a very low fat diet and this week my triglycerides were 559. My family doc said he normally lets it go til over 1000 with no med, but gave me a prescription for Lopid just because the GI said we have to get the triglycerides down. The GI says that my pancreas looks fine right now and that I don't have chronic panc. My pain and nausea were coming from my entire stomach wall being inflamed because of gastic bile reflux which was a complication of having my gallbladder removed. I guess the GI is right because my stomach is much better since he started me on carafate and reglan. However, when I said, "It's probably very unlikely that I'll ever have another attack of acute panc, right?" He said that he would not say that because with my triglycerides being high I could have one at any time. I was just wondering if anyone had any insight on how high the triglycerides get before they cause problems. I think you will learn that this disease can take so many different avenues and manifest itself for a variety of different reasons. Mine started as a result of excessively high triglycerids. Since I developed this problem with my pancreas I've found that this is not an uncommon cause of the disease. I am hoping that now that I've gotten my levels under control with my medications that I can prevent some of the acute attacks. I have been able to not have as many attacks as I was having and have now been able to go 9 months without another admission to the hospital. I do have some chronic pain but is much better than it used to be. My doc tells me that I've got quite a bit of damage to my pancreas, however since I've kept my triglycerids under control with the two different meds I take for it, the acute pain has decreased. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2001 Report Share Posted January 20, 2001 , I found out 20 years ago I had high cholesterol and tyiglycerids when my blood work up to check my electrolites could not be tested because of all of the fat in my blood. I was diagnosed with hyperlipidproteinemia type V, which is a hereditary condition. At that time my cholesterol was over 700 and my triglycerids were over 1500. I was immediately placed on Lopid and sent to a nutitionist for a low fat, low carbohydrate diet. After changing how I ate and watching my weight I was able to come off the Lopid for a period of time, however when I started having my children the counts would go up after my weight gains and I would have to go back on meds, a strict diet, and lose weight. After my last daughter was born 15 1/2 years ago now I have not been able to be off the medications in order to keep them under control. About 10 years ago I had some routine blood work done to check my levels and my cholestrol level was high even though I was taking the Lopid. Well, the crazy family doctor I had at the time took my off the Lopid and put me on cholestrol medication because he was worried that I would have a stroke or a heart attack because my levels were again not going under 400. He then failed to monitor my triglycerids or to be very concerned when they were high. Well, then 9 years ago I started having severe problems (with my pancrease) that the doctors could not identify. Finally after nearly dying and finding out it was the pancrease that was causing all the infection in my abdomen, my GI doctor checked my triglyerids and they were at 2399. This was what was causing the inflammation throughout my abdominal area that almost resulted in my death. They started me back on Lopid along with my cholesterol medication, which they didn't like doing at that time because of concerns about the side effects that both could cause damage to my liver. This caused one doctor to put me on high doses of niacin, which I thought was going to kill me. I finally had to find another doctor because this one would not put me back on my Lopid and the niacin was not lowering my levels. Needless to say I did have other acute attacks and yes my triglycerids were extremely high - at around 2500 or higher. Now because I was on cholesterol medications, my cholesterol looked good. Well, we went back on Lopid and Zocor and my levels stayed fairly level or within the 200's or 300's with no further attacks. Then Lipitor came out and my doctor wanted to try this out since it was the first drug on the market that showed positive results in lowering both cholesterol and triglycerids. He thought it would be better to not chance any damage to my liver if I could go on one med instead of two. Well, it didn't work and my triglycerids again shot up and I again went to the ER a couple of times and had to spend more time in the hospital, which by this time was also showing other problems beginning to come into play - kidney infections, low potassium levels. My pancrease is in pretty bad shape because of the acute attacks that were caused from the high triglycerid levels and I will continue to have problems, however I am not in near as bad a shape as many of the people here. I do have chronic pain, however now that I am taking Lopid and Lipitor my levels have been normal for both cholestrol and triglycerids on my last two tests. The liver tests also look good again. I caution everyone who has high triglycerid levels to be very cautious and take these high levels very seriously. For those of us that have the hereditary type of hyperlipidproteinemia, diet and weight lose alone do not control the levels. My mother watches her diet faithfully and is underweight and cannot control her levels. I have been on clear liquid, no fat diets and still had extremely high levels. My mother cannot take the medications because of other medical problems. She has type IV and her levels have never gotten as high as mine, however I worry that she has pancrease problems because of some of her symptoms. She has never been diagnosed with such, however I don't necessarily trust what the doctors are telling her because she has had some of the same symptoms that I've had. I am overweight now and cannot lose the weight even though there are times I do not eat anything but clear liquids or I'm on strictly IV fluids for extended periods of time. At least by being on the Lopid and Lipitor my levels are normal and I've not had an acute attack that has put me back in the hospital for 9 months now. I am just grateful for this and do watch my levels very carefully. I do worry too about the cholesterol causing a stroke or heart attack, however the problems I've had over the high triglycerids has been much worse than the cholesterol problems. The doctors are also finding that there has not been the liver damage found in the follow up research in those that have to take the combination of the two medications to control both levels that they initially thought would occur. Please don't let the doctor blow off these levels and listen to the GI doctor and get those levels down. I have an internal medicine doctor for my primary care physician to manage these levels as these seem to be the primary cause of all my problems. The GI doctor has never found any blockages, cysts, or growths. I've come to believe since the acute attacks are under control better now that the high triglycerids levels are back under control that these levels ARE extremely dangerous. I've come to learn that the pancrease cannot tolerate high levels of these fats. I also believe that because the infection in my pancrease tended to spread elsewhere in my abdomen - stomach, gallbladder, liver, abdominal lining - because the doctors were not accurately diagnosing my problem, a lot of damage resulted. Take a proactive approach with your doctors and demand that they keep your triglycerid levels under control and maybe you will be one of the lucky ones to not have another acute attack. This is what I find so wonderful about this site. I have learned so much from others and there are certain things now that I will not just allow the doctors to " try " . I don't think that the medical profession was aware of how much damage the triglycerids could cause to the pancrease until only the recent years. Hope this is helpful. I just cringe now when I hear someone say that their triglycerid levels are high and can not keep my mouth closed. I strongly advocate to them to make their doctors get these levels down immediately and keep them under control. Yes, heart disease and strokes are deadly, but I think I would have preferred to have heart problems or had a stroke over this. Sorry for this being so lengthy, however you can tell how strongly I feel about this. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2001 Report Share Posted January 20, 2001 Sandy, thanks for the info and for sharing your story. I do believe I will take the high triglycerides more seriously. I really hate the thought of taking yet another med, but I certainly don't want another attack of acute panc. I don't have any family history of cholesterol or triglyceride problems. I really tried to stick to a low fat diet but instead of going down, my triglycerides went up - suprisingly my cholesterol did go down, it was 250 in November and was 223 last week. I am thankful that my new GI believes in being proactive. My triglycerides were nowhere near as high as yours - I think mine were 559 - but still I will do everything I can to keep them from going that high. Thanks, , I found out 20 years ago I had high cholesterol and tyiglycerids when my blood work up to check my electrolites could not be tested because of all of the fat in my blood. I was diagnosed with hyperlipidproteinemia type V, which is a hereditary condition. At that time my cholesterol was over 700 and my triglycerids were over 1500. I was immediately placed on Lopid and sent to a nutitionist for a low fat, low carbohydrate diet. After changing how I ate and watching my weight I was able to come off the Lopid for a period of time, however when I started having my children the counts would go up after my weight gains and I would have to go back on meds, a strict diet, and lose weight. After my last daughter was born 15 1/2 years ago now I have not been able to be off the medications in order to keep them under control. About 10 years ago I had some routine blood work done to check my levels and my cholestrol level was high even though I was taking the Lopid. Well, the crazy family doctor I had at the time took my off the Lopid and put me on cholestrol medication because he was worried that I would have a stroke or a heart attack because my levels were again not going under 400. He then failed to monitor my triglycerids or to be very concerned when they were high. Well, then 9 years ago I started having severe problems (with my pancrease) that the doctors could not identify. Finally after nearly dying and finding out it was the pancrease that was causing all the infection in my abdomen, my GI doctor checked my triglyerids and they were at 2399. This was what was causing the inflammation throughout my abdominal area that almost resulted in my death. They started me back on Lopid along with my cholesterol medication, which they didn't like doing at that time because of concerns about the side effects that both could cause damage to my liver. This caused one doctor to put me on high doses of niacin, which I thought was going to kill me. I finally had to find another doctor because this one would not put me back on my Lopid and the niacin was not lowering my levels. Needless to say I did have other acute attacks and yes my triglycerids were extremely high - at around 2500 or higher. Now because I was on cholesterol medications, my cholesterol looked good. Well, we went back on Lopid and Zocor and my levels stayed fairly level or within the 200's or 300's with no further attacks. Then Lipitor came out and my doctor wanted to try this out since it was the first drug on the market that showed positive results in lowering both cholesterol and triglycerids. He thought it would be better to not chance any damage to my liver if I could go on one med instead of two. Well, it didn't work and my triglycerids again shot up and I again went to the ER a couple of times and had to spend more time in the hospital, which by this time was also showing other problems beginning to come into play - kidney infections, low potassium levels. My pancrease is in pretty bad shape because of the acute attacks that were caused from the high triglycerid levels and I will continue to have problems, however I am not in near as bad a shape as many of the people here. I do have chronic pain, however now that I am taking Lopid and Lipitor my levels have been normal for both cholestrol and triglycerids on my last two tests. The liver tests also look good again. I caution everyone who has high triglycerid levels to be very cautious and take these high levels very seriously. For those of us that have the hereditary type of hyperlipidproteinemia, diet and weight lose alone do not control the levels. My mother watches her diet faithfully and is underweight and cannot control her levels. I have been on clear liquid, no fat diets and still had extremely high levels. My mother cannot take the medications because of other medical problems. She has type IV and her levels have never gotten as high as mine, however I worry that she has pancrease problems because of some of her symptoms. She has never been diagnosed with such, however I don't necessarily trust what the doctors are telling her because she has had some of the same symptoms that I've had. I am overweight now and cannot lose the weight even though there are times I do not eat anything but clear liquids or I'm on strictly IV fluids for extended periods of time. At least by being on the Lopid and Lipitor my levels are normal and I've not had an acute attack that has put me back in the hospital for 9 months now. I am just grateful for this and do watch my levels very carefully. I do worry too about the cholesterol causing a stroke or heart attack, however the problems I've had over the high triglycerids has been much worse than the cholesterol problems. The doctors are also finding that there has not been the liver damage found in the follow up research in those that have to take the combination of the two medications to control both levels that they initially thought would occur. Please don't let the doctor blow off these levels and listen to the GI doctor and get those levels down. I have an internal medicine doctor for my primary care physician to manage these levels as these seem to be the primary cause of all my problems. The GI doctor has never found any blockages, cysts, or growths. I've come to believe since the acute attacks are under control better now that the high triglycerids levels are back under control that these levels ARE extremely dangerous. I've come to learn that the pancrease cannot tolerate high levels of these fats. I also believe that because the infection in my pancrease tended to spread elsewhere in my abdomen - stomach, gallbladder, liver, abdominal lining - because the doctors were not accurately diagnosing my problem, a lot of damage resulted. Take a proactive approach with your doctors and demand that they keep your triglycerid levels under control and maybe you will be one of the lucky ones to not have another acute attack. This is what I find so wonderful about this site. I have learned so much from others and there are certain things now that I will not just allow the doctors to "try". I don't think that the medical profession was aware of how much damage the triglycerids could cause to the pancrease until only the recent years. Hope this is helpful. I just cringe now when I hear someone say that their triglycerid levels are high and can not keep my mouth closed. I strongly advocate to them to make their doctors get these levels down immediately and keep them under control. Yes, heart disease and strokes are deadly, but I think I would have preferred to have heart problems or had a stroke over this. Sorry for this being so lengthy, however you can tell how strongly I feel about this. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2001 Report Share Posted January 21, 2001 In a message dated 01/20/2001 9:57:23 AM Eastern Standard Time, loggiekw@... writes: << Sandy, Do you mind me asking how high your triglycerides were? Mine are high now and going higher. The day before I had acute panc, I had routine lab work done and my triclycerides were around 270. When I saw my current GI the first time in Novemeber, they were 479. He says the triglycerides were what probably caused the panc. However, I don't really think 270 is that high. I've been following a very low fat diet and this week my triglycerides were 559. My family doc said he normally lets it go til over 1000 with no med, but gave me a prescription for Lopid just because the GI said we have to get the triglycerides down. The GI says that my pancreas looks fine right now and that I don't have chronic panc. My pain and nausea were coming from my entire stomach wall being inflamed because of gastic bile reflux which was a complication of having my gallbladder removed. I guess the GI is right because my stomach is much better since he started me on carafate and reglan. However, when I said, " It's probably very unlikely that I'll ever have another attack of acute panc, right? " He said that he would not say that because with my triglycerides being high I could have one at any time. I was just wondering if anyone had any insight on how high the triglycerides get before they cause problems. >> Hi , I hope you don't mind me chiming in, but I couldn't resist. My triglycerides cause my attack of acute pancreatitis about a year and a half ago and I have been told that I am not considered chronic either. My tri's were at 4000 when I had my attack. I am taking around 20 pills a day and 7 of them are for my tri's. Mine were down to around 360 when I was released from the hospital and have climbed as high as 3000 again recently. I take Gemfibrizol, Zocor and Niaspan for mine currently and they are down around 600. My GI has told me that it IS possible for me to have another acute attack as long as my tri's continue to raise. I think the norm is like 200 or so (?) but he said that some people just simply have higher counts but don't actually experience problems from it. I wish I could give you a " magic " number on when they could cause problems, but I don't have a clue. I do know that I live in fear everyday and any " twinge " in my abdomen totally freaks me out!!!! Also, I have recently found out that I am now diabetic which they told me was a possibility when I awoke from the coma because when I was out, my kidneys failed and I was given insulin at that time. I am currently controlling it with diet and meds and crossing everything I can in hopes that I can stay that way forever!!! Anyway, I just thought I would give you my story. has also had tri problems and would probably have some insight on the matter for you too. Best wishes and feel free to email me with any questions, okay? Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2001 Report Share Posted January 21, 2001 In a message dated 01/20/2001 3:43:04 PM Eastern Standard Time, smraef@... writes: << high doses of niacin, which I thought was going to kill me. >> Hi Sandy!! I got so tickled when I read this comment from you I KNOW exactly what you mean. I thought it would kill me too at one point. They say " you may experience some flushing " ........PLEEEAASE. Try more like third degree burns....OH MY GOSH. It was absolutely awful and it would last ALL DAY LONG too!! so, needless to say, I griped so much that they switched me to a prescription form called Niaspan because the niacin was helping lower my tri's and so far so good. I still get some burning sensations and have broken out in hives a few times, but it is more bearable now. My doc said that it takes some people a really long time to adjust to it but unless allergic, you usually do. I was first put on niacin when the Lipitor was causing major atrophy problems for me. When I awoke from the coma, I had to learn to walk all over again, and was doing well and feeling pretty good when all of a sudden, I started experiencing problems getting up and even bending my knees or ankles. My GI found that lipitor was the culprit and yanked me off of it. YEAH I too am on Zocor and it has proven to be mighty helpful in keeping my tri's low. Well, around 600, but compared to the 4000 that I was at, that is pretty good I think Anyway, I just wanted to let you know that you are not alone in knowing how serious these tri levels are. I preach alot about it and can't help chiming in when I see a post regarding them. That is what literally almost took my life a little over a year ago. I live in fear wondering when they are going to cause another acute attack on the 'ol pancreas. Any weird sensation in my abdomen and I flip my wig. Gotta run, your triglyceride pal, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2001 Report Share Posted January 22, 2001 In a message dated 01/21/2001 7:27:38 AM Central Standard Time, spets@... writes: << My GI has told me that it IS possible for me to have another acute attack as long as my tri's continue to raise. I think the norm is like 200 or so (?) but he said that some people just simply have higher counts but don't actually experience problems from it. I wish I could give you a " magic " number on when they could cause problems, but I don't have a clue. I do know that I live in fear everyday and any " twinge " in my abdomen totally freaks me out!!!! Also, I have recently found out that I am now diabetic which they told me was a possibility when I awoke from the coma because when I was out, my kidneys failed and I was given insulin at that time. I am currently controlling it with diet and meds and crossing everything I can in hopes that I can stay that way forever!!! Anyway, I just thought I would give you my story. has also had tri problems and would probably have some insight on the matter for you too. Best wishes and feel free to email me with any questions, okay? Hugs, >> , it sounds like you really did have a severe acute attack!!! My levels haven't gotten as high as yours and that is what causes my attacks. Whatever you can do to get these levels under control is important!!!! One of my doctors said that he has a patient whose levels have gone up to 5000. Unbelievable isn't it? I am chronic now and have had numerous attacks as a result of these levels not being under control. The damage that has been caused to my pancrease is severe and they are monitoring all the other levels - enzymes and sugar levels - on a regular basis as well. I've never had any blockages like so many others here have. My acute attacks have been definitely correlated back to the high tyiglycerid levels each time I have had an attack. The combination of Lipitor and Lopid (generic name) have kept mine under control now for the last 9 months. Since I have so much damage to the pancrease I do have chronic pain, but it is nothing like the acute pain. I don't know if this helps clarify anything or not, but my acute attacks are definitely correlated to the high triglycerids. There are concerns that with the damage that has been done other problems will become more prominent in the future. I am just taking one day at a time and trying to focus on keeping another acute attack from occuring. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 In a message dated 01/22/2001 3:53:08 PM Eastern Standard Time, smraef@... writes: << I don't know if this helps clarify anything or not, but my acute attacks are definitely correlated to the high triglycerids. There are concerns that with the damage that has been done other problems will become more prominent in the future. I am just taking one day at a time and trying to focus on keeping another acute attack from occuring. Sandy >> yep..........diabetes is a result of that!!!! YUK I just finished a four day seminar about my diabetes and there is still so much more I don't know. I was on Lipitor and Lopid (gemfibrizol) for a while to but the Lipitor gave me really bad muscle atrophy so I had to go off of it. Now I take Niaspan with the lopid and it took them from up around 3000 a few months ago to where they are now at 600. I know too that our attacks are contributed to these high levels too...........scared me to death when I was back up around 3000 again too!!!!! 4000 just must be my " attack " number LOL Thanks for sharing Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 I was on Lipitor and Lopid (gemfibrizol) for a while i was on both of these together for a while also, but my tri's were never way overboard when i had my attacks so they don't think they had anything to do with my pancreatitis. my doctor took me off the lopid and put me on zocor and continued the lipitor. they didn't like me taking so much lopid. my panc. is still idiopathic at this point. i wish i had a definate reason, as i know many of you would. my high tri's are hereditary and the doctor said i will probably have to take something for them all my life. debbie (ark) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2001 Report Share Posted January 28, 2001 Lipitor gave me really bad muscle atrophy so I had to go off of it. Now I take Niaspan with the lopid and it took them from up around 3000 a few months ago to where they are now at 600. I know too that our attacks are contributed to these high levels too...........scared me to death when I was back up around 3000 again too!!!!! 4000 just must be my "attack" number LOL Thanks for sharing , I am glad your levels have come down. I hadn't heard about this other medication yet. What kind of problems were you having with the muscle atrophy? I have problems at night, when I can sleep, with being tense all the time and the muscles jerking so bad sometimes that it wakes me up. I've been going to talk to my doctor about this, but seems like one thing or another takes priority over this. Hope you are doing well? Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 In a message dated 01/28/2001 11:44:42 PM Eastern Standard Time, smraef@... writes: << , I am glad your levels have come down. I hadn't heard about this other medication yet. What kind of problems were you having with the muscle atrophy? I have problems at night, when I can sleep, with being tense all the time and the muscles jerking so bad sometimes that it wakes me up. I've been going to talk to my doctor about this, but seems like one thing or another takes priority over this. Hope you are doing well? Sandy >> Hi there. I know what you mean about one problem out-weighing the other!!! My muscle problems were pretty constant. I started having a lot of soreness, like I had just worked out really really hard(and we all know that doesn't happen ha ha) and I had a lot of trouble with just stiffness. I could sit for just a few minutes and then when I stood up, it was like I couldn't bend my knees or ankles. When my hubby and I would go out to eat, I would tell him to be sure to wait on me coz I couldn't just stand up and immediately start walking. I had to stand there for a few and try to loosen everything up first. I had just recently learned to walk again after the coma, and I wasn't about to let any drug slow me down again!!!! I didn't know what was causing it at the time though, but when I explained it to my GI, he took me right off of it ASAP!!! I hope you get a chance to mention it to your doctor soon. Make sure you let me know when you do!! Hope things are going better for ya!! Hugs, Quote Link to comment Share on other sites More sharing options...
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