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Thread: Please help, I've been diagnosed with familial hypercholesterolemia =[ page 3

  1. #21
    mrquick42's Avatar
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    I will echo JudyCr in saying sorry to hear about the diagnosis. I also am not an expert on Hypercholesterolemia, so whatever I offer here is purely the little bit of knowledge I have scraped together from sites like this and others that decline to take the conventional wisdom at face value with no questions asked. I can't stress enough the importance of doing your own research on this matter and doing everything you can to become even more of an expert on this condition than your doctor is. After all, this doesn't affect your doctor's health, it affects yours.

    Unfortunately, the medical systems in the developed world seem to have little interest in actually curing their patients, preferring instead to medicate them into what is essentially a drug-addicted state. I.E. Someone is diagnosed with type II diabetes and instead of prescribing a way of eating (like Primal) that would actually do some good in curing the underlying problem (metabolic syndrome and diabetes), their doctor will 99 times out of 100 tell them to eat more heart healthy carbs, no fat, get more exercise, and get busy taking that Metformin. Many around here know that this CW prescription for diabetes treatment does little if anything to restore the individuals health (ask Griff.) Instead the individual does their best to follow this plan, sees little long-term improvment in their blood sugar numbers or overall health, and resigns themselves to a lifetime of taking Metformin and other drugs. The patient dutifully takes their Metformin, along with all the other drugs that will be prescribed as their health gradually deteriorates, until they eventually succumb to stroke, heart disease, or one of the myriad other diseases that are exacerbated by metabolic syndrome.

    The medical system chalks this outcome up as the unfortunate results of your getting dealt a bad hand of cards genetically speaking. No skin off their nose, they did everything the possibly could. Or at least everything the system really allows them to do. Another unfortunate characteristic of the modern medical system is that its practices are mostly driven by what is healthy for the pharmaceutical companies and medical equipment manufacturers rather than what is healthy for the patients. Drug companies and equipment manufacturers can make a lot of money selling drugs and whatnot to chronically ill patients, especially when governments are picking up a large portion of the tab. They make very little money when people are educated in the proper way to keep themselves healthy through things that are essentially free like diet and exercise. As a result they spend many millions of dollars each year on research into new drugs to treat (not cure) major health issues, and spend many more millions giving grants to scientists whose research confirms that these drugs are the best way to treat these conditions. Scientists who conduct research that might disagree with or disprove the conventional wisdom (like the lipid hypothesis) that allows these companies to rake in the cash often get their funding withdrawn. Their papers don't get published, they get branded as crackpot, and they have trouble finding work.

    The modern doctor is surprisingly uneducated about anything other than the conventional wisdom handed down from various governmental bodies (in the U.S., the Food and Drug Admin., the American Heart Association, the Dept. of Agriculture, the Dept. of Health and Human Services, the Centers for Disease Control, etc.), and the drug companies themselves. They have essentially been turned into glorified flow-chart readers. If their patient complains of symptoms consistent with diagnosis A, they follow the flow-chart and prescribe whatever the drug companies and government bodies tell them to. To do otherwise opens them up to serious risk of lawsuits if things don't go well. There is no room in the system for a doctor to deviate from the plan handed down by the government. Even if you walk into the doctor's office and asked them about an alternative treatment you read about the best you are likely to get out of them is "if you want to try something else, I can't stop you." They aren't going to offer it to you voluntarily, because to do so exposes them to legal risk. Conversely, they could lose every last one of their patients to heart disease and be pretty much immune to any legal repurcussions if they had followed conventional wisdom and prescribed a statin and a "heart-healthy" diet. This is why it is so rare to find a doctor willing to talk seriously about anything that falls outside the conventional wisdom.

    If I were in your position Audrina, I would want a whole lot more information before I did one single thing to change my diet or began taking any kind of medication. From what I have been able to ascertain, there is very little evidence (if any) that solidly supports the lipid hypothesis (the hypothesis that eating fat increases increases cholesterol, which in turn increases risk of cardiovascular disease,) and a whole lot of scientific evidence that challenges it. I would try to learn all I could about the issue. I would read abstracts from studies that both support and challenge the hypothesis, and rebuttals to those studies. Then I would talk to a doctor about it. If the doctor isn't willing or able to talk to you on an intelligent level then find a different one. If they say "What is the lipid hypothesis?" or "What do you mean by pattern A LDL?", run away as fast and as far as you can.

    Learn all you can about cholesterol, and learn all you can about your specific condition. I can almost assure you that you will walk away from an appt. with the average lipid specialist with a prescription for a statin (Lipitor, Crestor, whatever.) I know many studies have shown that these cholesterol lowering drugs are only beneficial in a narrow class of people (men, over-65, with at least one previous heart attack I believe) and are tremendously over-prescribed. They have been shown to have little if any benefit for women of any age. In fact, the studies seem to show that for women, the higher your cholesterol the lower your risk of death from all causes. With that being said, you might be a special case. I don't know if there have been any studies done specifically testing women with hypercholesterolemia and the effects of cholesterol lowering medications. This would be something to ask the doctor about if you can't find it through Google. Keep in mind that what you are looking for is information on all-cause mortality. It does you no good to lower your risk of heart disease by 50% if your risk of dying from something else goes up a simliar amount.

    That is about all I have for this rant. I would direct you towards Griff's primer on cholesterol http://www.marksdailyapple.com/forum/thread4723.html. He educated himself on the topic when he had some troubling bloodwork come back a few years ago and has become something of an expert on the topic. I'm going to go re-read it myself. Good luck, and I hope some of this helps =)
    Last edited by mrquick42; 05-18-2012 at 09:23 AM. Reason: added llink

  2. #22
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    Wow, mrquick42, what a wonderful post full of great information! I am definitely seeking more answers for this condition so I will check out this Griff that you speak of and get my test results sent to me so I can post them on here for some opinions . Once again, thanks for your fantastic reply.
    Female, 5'3", 22. Living Primally since April 2012.

  3. #23
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    Audrina - I have FH - I was diagnosed 2 years ago. I am also the co founder of the The FH Foundation and work with organizations like Heart UK even though I live in Texas. PLEASE understand some very simple life saving truths. Familial Hypercholesterolemia is not curable but is treatable. The research I have done is immense and I assure you that we, you and I, are going to be ok.

    Every cell in the human body requires a little tiny bit of LDL to function. The body sends out LDL in to the blood stream about every 10 minutes, every day and night of your life. The cells that need it, scoop it up and bring it inside, the cells that don't, leave it like trash on the outside of the cell wall. When the blood flows thru the liver, Receptors, ( the trash men) collect the LDL and we pass it in our waste. You and I have broken receptors. A person born with FH has had broken receptors in their liver since birth and this has terrible implications as to when our heart disease will start. You and I have had extra LDL cholesterol floating and depositing in our arteries and on our tendons our entire lives.

    The hard part for some to understand is that this LIPID DISORDER WILL HAVE an end game of heart disease if left untreated. Diet and exercise is not enough and I promise you - I have had these and MANY other conversations like it. I had my first heart attack at 41 just after completing a 10K race! Skinny, fit people have this disorder - high cholesterol can be a fat persons laziness but you and I are not that fat lazy girl.... we have a genetic disorder in fact 1 in 500 of us have FH and most of us go undiagnosed before we have a cardiac event. I think you are very fortunate.

    Your doctors are going to ask you to take some medication - I take it and so does my 11 year old son. You see, if you have this, so does one of your parents and possibly other blood relatives. It is passed to us from them. My son was diagnosed early BECAUSE I learned that this is a FAMILY disorder. By treating him with a statin early in life, we are stabilizing the plaque ALREADY building up in his arteries AND HE MAY NEVER HAVE TO suffer like I am with 6 stents in my heart.

    I want to introduce you to my friend Kate who lives in the UK and also has FH. Healthy living is ALWAYS the best choice but for us, we need a little extra help. I hope you will let me share more with you and welcome your email anytime. I hope that you will take it from a girl who has DEDICATED her life to this issue - FH will cause heart attacks and strokes if left untreated with more than life style choices. LDL cholesterol is necessary in our bodies but too much is lethal.

    All the Very BeWenter Blair.jpgst - Wenter

  4. #24
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    I really like this 6 hour seminar by Dr Matt Lalonde. Lalonde is a Harvard Biochemist and follows a paleo diet. There's a man in the audience who has the same thing that you have so there's a back and forth discussion about it. Lalonde thought this man should also be on a low fat diet. The man had been to his cardiologist who told him his arteries were clean and that he had .5% chance of having a heart attack in the next 10 years. He attributes it to following the exercise program and the right diet. This seminar is given at a crossfit gym to its clients and personal trainers. The man is also on Lipator

    If you want a paleo seminar loaded with a ton of science to backup your eating style this would be at the top of that list. It's certainly at the top of my recommendations to others. It cost $99 but you get to watch it over and over and over. I did that to drill it into my mind.

    I'll write out he subcategories under the Lipid section in part 2

    Part 1 Intro to protein metabolism
    Part 2 The Lipid Hypothesis
    - 2a Fat, Cholesterol and Ancel Keys
    - 2b Dietary Fat and Metabolic Syndrome
    - 2c Dietary Fat, Choline, and Liver Function
    - 2d Polyunsaturated Fatty Acid Metabolism
    - 2e Meat/Fat Quality and Cancer
    - 2f Making sense of Keys' Obervations
    Part 3 Carbohydrate Hypotesis
    Part 4 Grains, Legumes, and Dairy
    Part 5 Q & A

    To get to the seminar click on the second link titled "Science of Nutrition" after clicking here: Search Results for: Science of nutrition
    Last edited by Scott F; 05-18-2012 at 04:17 PM.
    Would I be putting a grain-feed cow on a fad diet if I took it out of the feedlot and put it on pasture eating the grass nature intended?

  5. #25
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    The Weston A Price foundation has the best information about this.

    But aside from that, lets talk about healthy eating for a minute.

    It is possible to eat a paleo diet that is low in fat. I know that sounds crazy to some people, but I think it's entirely possible. If you are eating chicken, fish, and offal on occasion, and then mostly eating vegetables and fruits -- which is paleo -- then guess what? Eating a low-fat paleo diet.

    At the end of the day, you're going to have to find the ratios that work for you -- where you feel satisfied and get your needs met.

    I had hypocholesterolemia (genetically low cholesterol) which made veganism impossible, vegetarianism possible, and paleo comfortable. But, I still only consume about 40-45% fat, which is low for some here, and I think it would be possible (and comfortable) for me to go lower fat, maintain my protein, and go "higher carb" on a paleo diet as well. It's just a matter of finding the right sources of foods for me.

    I wish you all the best, and I hope that you do not go on any medications until you start to see secondary symptoms from the issue.

    Also, if you are in menopause or perimenopause, this might actually sort itself in several years. my mother's cholesterol was "very very high" and they put her on statins. She didn't take them, and within three years her numbers were back to normal. She'd gotten through menopause and that was that.

  6. #26
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    Well, I don't know much about this condition or many medical conditions in general, however I will echo the sentiments here; research for yourself and treat your Doctor's opinion as just that, an opinion. Just because they have a degree in something doesn't mean they know what the hell they're talking about, especially in relation to your body and your way of eating.

    As for your family, I understand that it's tough, but don't let them push you into eating their way again. It obviously wasn't working before and now that you're on Primal, feeling good, there's no need to go back. They're likely going to push hard but dig in, hold your ground, and hold your head up high.
    Went Primal July 25th, 2011.

    Current Age: 25

    Total Loss: 126 lbs

    Starting Stats: Weighed 266 lbs, Body Fat 37.6% (100 lbs), BMI 40.9

    Current Stats: Weight 140 lbs, Body Fat 15.2% (21.1 lbs), BMI 21.2

    Current Goals: Get a stronger core through Pilates and continue being as Primal as I can be.

    My Weight Loss Notes Now on a blog page. It starts with "My Weight Loss: Introduction." Available to the public, share with friends if you'd like!

  7. #27
    peril's Avatar
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    Do not under any circumstances take advice from someone who poisons an 11 yo with cholesterol lowering drugs

    Quote Originally Posted by Wenter View Post
    Audrina - I have FH - I was diagnosed 2 years ago. I am also the co founder of the The FH Foundation and work with organizations like Heart UK even though I live in Texas. PLEASE understand some very simple life saving truths. Familial Hypercholesterolemia is not curable but is treatable. The research I have done is immense and I assure you that we, you and I, are going to be ok.

    Every cell in the human body requires a little tiny bit of LDL to function. The body sends out LDL in to the blood stream about every 10 minutes, every day and night of your life. The cells that need it, scoop it up and bring it inside, the cells that don't, leave it like trash on the outside of the cell wall. When the blood flows thru the liver, Receptors, ( the trash men) collect the LDL and we pass it in our waste. You and I have broken receptors. A person born with FH has had broken receptors in their liver since birth and this has terrible implications as to when our heart disease will start. You and I have had extra LDL cholesterol floating and depositing in our arteries and on our tendons our entire lives.

    The hard part for some to understand is that this LIPID DISORDER WILL HAVE an end game of heart disease if left untreated. Diet and exercise is not enough and I promise you - I have had these and MANY other conversations like it. I had my first heart attack at 41 just after completing a 10K race! Skinny, fit people have this disorder - high cholesterol can be a fat persons laziness but you and I are not that fat lazy girl.... we have a genetic disorder in fact 1 in 500 of us have FH and most of us go undiagnosed before we have a cardiac event. I think you are very fortunate.

    Your doctors are going to ask you to take some medication - I take it and so does my 11 year old son. You see, if you have this, so does one of your parents and possibly other blood relatives. It is passed to us from them. My son was diagnosed early BECAUSE I learned that this is a FAMILY disorder. By treating him with a statin early in life, we are stabilizing the plaque ALREADY building up in his arteries AND HE MAY NEVER HAVE TO suffer like I am with 6 stents in my heart.

    I want to introduce you to my friend Kate who lives in the UK and also has FH. Healthy living is ALWAYS the best choice but for us, we need a little extra help. I hope you will let me share more with you and welcome your email anytime. I hope that you will take it from a girl who has DEDICATED her life to this issue - FH will cause heart attacks and strokes if left untreated with more than life style choices. LDL cholesterol is necessary in our bodies but too much is lethal.

    All the Very BeWenter Blair.jpgst - Wenter
    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

  8. #28
    Nady's Avatar
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    Quote Originally Posted by peril View Post
    Do not under any circumstances take advice from someone who poisons an 11 yo with cholesterol lowering drugs
    Don't know if that's fair~ genetic disorders are unique, take different treatment. Not just your *run of the mill* SAD caused high cholesterol~

  9. #29
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    Quote Originally Posted by Nady View Post
    Don't know if that's fair~ genetic disorders are unique, take different treatment. Not just your *run of the mill* SAD caused high cholesterol~
    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.
    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

  10. #30
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    Quote Originally Posted by AudrinaBlythe View Post
    Hi guys,

    I'm having a bit of a bad day today, I had my full bloods taken at the start of this week. I got the results back today and it turns out I have a rare genetic disorder called familial hypercholesterolemia which means I have abnormally high cholesterol levels.

    I have a small and very slim frame (5'3" and 109lbs) and I'm a huge advocate of healthy eating so this has come as somewhat of a blow to me because now it looks like I can't follow the Paleo diet properly anymore. My LDLs (low density lipoprotein) rang in at 8.8 (it's only supposed to be around 2.2) and the doctor said that my figure is higher than that of an obese person brinking on the edge of a heart attack.

    Basically, I have to go on a super low-fat diet now and probably medication after I'm referred to a lipid specialist. I'm pretty much not allowed to eat red meat anymore and I'm banned from using fatty cooking oils such as the coconut oil I use religiously.

    So, can any of you good people suggest any modifications I can make to my diet without having to sacrifice the Paleo lifestyle? Because I honestly cannot think of anything worse than having to eat grains again.

    Nicole x

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