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Please help, I've been diagnosed with familial hypercholesterolemia =[

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  • #31
    Even with your diagnosis, I would not be convinced to go back to a CW diet. I would, however, move to a lower fat Cordain style version of Paleo. It is harder and not as fun, but it should give you the combined benefits of reducing inflammation which is CRITICAL for preventing plaque buildup in your arteries and keeping your cholesterol lower.

    I would do lots of lean beef and lamb, lots of fish and avocados. I would work very hard to keep inflammatory food out of my diet.

    You should also make sure your diagnosis is correct. A second opinion is important before making big changes. Do you have a family history of early death from heart disease or any of the other complications of FH?
    Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

    http://www.krispin.com/lectin.html

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    • #32
      Originally posted by peril View Post
      Statins have not been shown to benefit anyone other than middle aged men who've had a vascular event. Using such powerful drugs on anyone else is totally wrong.

      Cholesterol is not a problem in the absence of inflammation. Treat inflammation by all means. Paleo living is the best way I know of doing that.

      For the OP, a lowish fat paleo diet may well be indicated. Test for inflammation (HS CRP). If it is high then it should be monitored until the paleo lifestyle has had a chance to take effect. If it doesn't then try something else.

      Also, the OP should get a stress echocardiogram and a coronary artery scan. These are the best ways of monitoring coronary artery health without surgery. Certainly, if these indicate no heart disease, as they should at 22, then you have plenty of time to give a paleo lifestyle the chance it deserves.
      I think there is some evidence that low dose statins can be helpful in FH. This has not been found in all studies though.

      Efficacy of statins in familial hypercholesterolaemia: a long term cohort study | BMJ
      Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

      http://www.krispin.com/lectin.html

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      • #33
        Thanks for your responses, folks, your help and advice really means a lot to me. I've decided to stick with my Paleo diet for the time being until I see a lipid specialist but I'm eliminating lamb from my diet and limiting my intake of bacon to twice a month and grass fed beef to two / three times I week.

        I'd also like to say a special thank you to Wenter because I feel like I'm not alone with this condition and, if possible, I'd very much like to speak with you further about it so I'm going to PM you. Thanks again.
        Female, 5'3", 22. Living Primally since April 2012.

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        • #34
          The majority of my family has very high cholesterol levels and perpetually high blood sugar levels. Even when exercising daily and being extremely skinny. They are living proof that "skinny isn't always healthy." One of my uncles and my grandfather have both begun statin drugs and are now pushing ALL of us to start on them at the FIRST sign of high cholesterol. They won't even listen to me if I try to tell them the dangers of statins. Forget that. Of course, they're all eating "healthy diets" with up to 400 grams a day of carbs, mostly from grains. Far be it from me to begin on the bad idea THAT is and how it can be linked to their cholesterol issues.

          Personally, I began Paleo/Primal less to lose weight as most people do, and more to prevent myself from being the next "mystery" skinny guy on high doses of statins. (But you're so healthy otherwise! You lift weights, you run, you're lean, I don't get it!)

          Frankly, I'm eating LOTS of healthy fats, trying to avoid the omega-6 fats for a variety of issues (although the occasional dose of pork, chicken, and nuts won't get me down, you do need SOME omega-6) and exercising a lot. I am also trying to get over the lipid theory/hypothesis, which as I do more and more reading, I am finding to be complete bunk.

          I encourage you to seek out a doctor who understands the Paleo/Primal diet (they are out there, look hard!), and get their take on things.
          "The cling and a clang is the metal in my head when I walk. I hear a sort of, this tinging noise - cling clang. The cling clang. So many things happen while walking. The metal in my head clangs and clings as I walk - freaks my balance out. So the natural thought is just clogged up. Totally clogged up. So we need to unplug these dams, and make the the natural flow... It sort of freaks me out. We need to unplug the dams. You cannot stop the natural flow of thought with a cling and a clang..."

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          • #35
            Frightening frightening thread. And giving statins to an eleven year old! I didn't think there was anyone that mad.

            I'll read up about this Familial Hypercholesterolema. It sounds like bunk right off - essentially, a group of early heart attacks for hereditary reasons uncorrelated against some people naturally slightly higher types of cholesterol vehicles. I can't imagine the mechanism why slightly higher than normal numbers of one type of vehicle was so bad, and I can't really believe anyone who really lacked the proper receptors in their liver would live past gestation, let alone a long and healthy life prior to a heart attack in adulthood. Someone who's liver can't collect spent LDL is suffering from liver failure, surely.

            The poor 11 year old lad on statins. They will ruin his life. His brain won't develop properly, then puberty will be delayed or stunted. So dangerous. Can't you encourage him to take up smoking instead? At least it looks cool, will stunt his growth less and otherwise probably won't do him any harm until he's in his 70s. Unfortunately on statins there is a fair old chance he won't see his 30th birthday, at which point the doctors will all congratulate themselves for doing all they could and blame it on genetics.

            There is a colleague of mine in the same boat. Takes all manner of statins, has multiple stents in his heart. Had a heart attack in his 30s recently. Would he have without having taken all those drugs for the last ten years? Probably not. They certainly don't seem to have done him much good.

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            • #36
              Did you properly fast before the test?

              How many of your blood relatives have confirmed diagnoses, rampant family history of heart attacks?

              A second test would make sense as a sanity check along with the other info you are gathering.

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              • #37
                Hi springnr,

                Yes, I had a fasting glucose blood test but I'm sure I will be having another blood test soon and on-going tests when I am referred to a specialist. For now, I am sticking with my usual Paleo diet. The only thing I am cutting out is lamb and I am reducing my intake of bacon. In fact, I'm actually grilling myself some beef burgers as I type this.
                Female, 5'3", 22. Living Primally since April 2012.

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                • #38
                  My concern is that Wenter doesn't mention getting a VAP or NMR or coronary calcium scan. I think those would be so important for someone looking at this diagnosis. I would not allow only one set of numbers to set a diagnosis of FH on me! Recent weight loss can skew lipid panel numbers artificially for a few months.

                  I know you have been given loads of advice and info here, but I would add one last bit: go to Dr. William Davis' "Track Your Plaque "website. He is a interventional cardiologist who specializes in treating conditions like yours. ( if you actually have it). He takes people who have been given dire diagnosis' ( not that yours is) and makes sense of restoring them to health. He is Paleo Friendly and also the author of the book Wheatbelly.

                  Dr. Davis talks about people with the ApoE genetic trait. This may be you. It means you kinda have to be low carb AND low fat to maintain desirable numbers.

                  Cheers
                  Last edited by RenegadeRN; 05-25-2012, 10:24 AM. Reason: Edited for typos

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                  • #39
                    Frightening Indeed

                    Originally posted by billp View Post
                    Frightening frightening thread. And giving statins to an eleven year old! I didn't think there was anyone that mad.

                    I'll read up about this Familial Hypercholesterolema. It sounds like bunk right off - essentially, a group of early heart attacks for hereditary reasons uncorrelated against some people naturally slightly higher types of cholesterol vehicles.
                    As you'll no doubt notice, this is a first time post. I've got a co-worker with FH that I'm helping with some research, which led me here.

                    The advice you give and tone that's used is at a minimum ignorant and at worst dangerous. The problem is that by fighting conventional norms and medical advice, you've essentially turned into the monster that the paleo/primal community has worked so hard to combat: people (or doctors) who give a one-size fits all, dogmatic nutritional recommendations.

                    Maybe next time before you start your insulting rants, you should actually "read up" on the topic before hand.

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                    • #40
                      I think I may have familial hypercholestrolemia. At least, my numbers are high enough to give my docs heart attacks! ;-) (At one point, over 10 mg per mmol.) We discovered this when I had a stroke at 53. My father's family consisted of 2 types of people, the very aged, and the ones who died before 60 of various nasty ailments. My father lived to 92. His mother died at 64, and I often wondered if I would live to 65. I've made it and then some, but I have adamantly refused statins after trials caused me intense muscle pains. Now that I'm officially living on borrowed time, I give major credit to low carbing for helping me get here, and not to my faulty genes.

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                      • #41
                        Originally posted by Texasbill View Post
                        As you'll no doubt notice, this is a first time post. I've got a co-worker with FH that I'm helping with some research, which led me here.

                        The advice you give and tone that's used is at a minimum ignorant and at worst dangerous. The problem is that by fighting conventional norms and medical advice, you've essentially turned into the monster that the paleo/primal community has worked so hard to combat: people (or doctors) who give a one-size fits all, dogmatic nutritional recommendations.

                        Maybe next time before you start your insulting rants, you should actually "read up" on the topic before hand.
                        Perhaps you could tell us exactly what is hypercholesterolemia? What are its symptoms? AFAIK it is nothing but measured high cholesterol. This "disease" is nothing by a symptom.

                        The real issue here is do those with FH necessarily have to suffer from increased likelihood of CVD, PVD, stroke etc. The Lyon Diet Heart Trial was stopped early because the two trial groups had markedly different death rates despite having very similar total cholesterol.

                        Yes it is possible to reduce death due to vascular events by using drugs to specifically reduce cholesterol. It is also possible to increase deaths due to other causes. How much better could we do by specifically focussing on anti-inflammatory lifestyles rather than popping pills to mitigate a far from optimal lifestyle?
                        Four years Primal with influences from Jaminet & Shanahan and a focus on being anti-inflammatory. Using Primal to treat CVD and prevent stents from blocking free of drugs.

                        Eat creatures nose-to-tail (animal, fowl, fish, crustacea, molluscs), a large variety of vegetables (raw, cooked and fermented, including safe starches), dairy (cheese & yoghurt), occasional fruit, cocoa, turmeric & red wine

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                        • #42
                          Originally posted by peril View Post
                          Perhaps you could tell us exactly what is hypercholesterolemia? What are its symptoms? AFAIK it is nothing but measured high cholesterol. This "disease" is nothing by a symptom.

                          The real issue here is do those with FH necessarily have to suffer from increased likelihood of CVD, PVD, stroke etc. The Lyon Diet Heart Trial was stopped early because the two trial groups had markedly different death rates despite having very similar total cholesterol.

                          Yes it is possible to reduce death due to vascular events by using drugs to specifically reduce cholesterol. It is also possible to increase deaths due to other causes. How much better could we do by specifically focussing on anti-inflammatory lifestyles rather than popping pills to mitigate a far from optimal lifestyle?
                          Just read about the Lyon study. Looks like it refutes PB CW regarding consumption of saturated fats, red meat, etc. Also indicates ground flaxseed is helpful even with its high PUFA content. What am I missing?

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                          • #43
                            I have just finished the book "The Great Cholesterol Con" by Dr Malcolm Kendrick ( a Scottish GP (General Practitioner))
                            The Great Cholesterol Con: Amazon.co.uk: Dr Malcolm Kendrick: Books...
                            It is very insightful into cholesterol and the fact that dietary cholesterol cannot be transformed into blood cholesterol.
                            He uses population studies (published by WHO (World Health Organisation) to show that cholesterol isn't the cause of CVD (Cardiovascular disease).. ..He also goes into Statins and their method of action....potentially they could add a whole day to your life over a 30 year prescription apparently....nobody is quite sure how they work but they appear to thin the blood in a similar way to aspirin/warfarin etc and have no specific cholesterol reducing action.. Many of them have nasty side effects and Vioxx had to be taken off the market after it was blamed for a lot of deaths (potentially 60000-100000 deaths in the US alone)
                            Cortisol also comes up near the end of the book as a possible cause of heart disease and he has a well thought out argument for stress being a major cause of CVD....not just perceived stress such as a bad day at work but population displacement....again he uses large scale studies to back his arguments...
                            He is quite humourous in the way that he writes and he does make mention to FH in some parts of the book too...

                            hope this helps

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                            • #44
                              Originally posted by fuzzynavel View Post
                              I have just finished the book "The Great Cholesterol Con" by Dr Malcolm Kendrick ( a Scottish GP (General Practitioner))
                              The Great Cholesterol Con: Amazon.co.uk: Dr Malcolm Kendrick: Books...
                              It is very insightful into cholesterol and the fact that dietary cholesterol cannot be transformed into blood cholesterol.
                              He uses population studies (published by WHO (World Health Organisation) to show that cholesterol isn't the cause of CVD (Cardiovascular disease).. ..He also goes into Statins and their method of action....potentially they could add a whole day to your life over a 30 year prescription apparently....nobody is quite sure how they work but they appear to thin the blood in a similar way to aspirin/warfarin etc and have no specific cholesterol reducing action.. Many of them have nasty side effects and Vioxx had to be taken off the market after it was blamed for a lot of deaths (potentially 60000-100000 deaths in the US alone)
                              Cortisol also comes up near the end of the book as a possible cause of heart disease and he has a well thought out argument for stress being a major cause of CVD....not just perceived stress such as a bad day at work but population displacement....again he uses large scale studies to back his arguments...
                              He is quite humourous in the way that he writes and he does make mention to FH in some parts of the book too...

                              hope this helps
                              How can anyone refute the fact that statins reduce LDL? Whether or not the cholesterol reduction contributes to reduced risk of CVD is, of course, highly debatable. Maybe he is making a distinction between LDL and cholesterol?

                              Comment


                              • #45
                                Originally posted by Artbuc View Post
                                How can anyone refute the fact that statins reduce LDL? Whether or not the cholesterol reduction contributes to reduced risk of CVD is, of course, highly debatable. Maybe he is making a distinction between LDL and cholesterol?
                                Ill go grab the book and re-read the relevant section for clarity and repost a little later.

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