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  • FH: Familial Hypercholesterolemia

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    Old 10-06-2004, 12:27 PM   #1
    ty123
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    FH: Familial Hypercholesterolemia

    It is my hope that the Atkins and low carb fans will respect this thread and not post foot-long diatribes on Atkins etc. It is about FH and recognized treatments of it.
    --------


    How do you know if you have a type of FH? Its complicated. In most cases FH is never identified.

    There are two main types of FH: Heterozygous, and Homozygous. The former has inherited a mutated gene from one parent, and the latter from both. The former is 1 in 500 in the population, and the latter is 1 in 1,000,000.

    A genetic test can confirm the condition, but more often it is inferred from a combination of family history and personal lipid tests.

    Here is a list of symptoms:

    A physical examination may reveal xanthomas, xanthelasmas and cholesterol-laden deposits called a corneal arcus.

    Laboratory testing may show:

    * elevated triglycerides
    * protein electrophoresis may show abnormal results
    * total plasma cholesterol that is greater than 300 mg/cc (adult)
    * total plasma cholesterol that is greater than 250 mg/cc (children)
    * serum LDL that is higher than 200
    * studies of heart function, such as a stress test, may be abnormal
    * special studies of patient cells (fibroblasts) may show decreased uptake of LDL cholesterol
    * genetic testing for mutations in the LDL receptor gene


    In my own case for example, both of my grandfathers had heart attacks in their mid/early 50's, and so did my mother who was identified as having hyperlipidemia. I've also had obvious corneal arcus for the last 20 years. My total baseline plasma cholesterol is over 350. I've never actually had the genetic test, but my doctors have made it clear that I have it, and nothing I've seen has contradicted that. So far at the age of 50 I've had no obvious indications of heart disease, but I am closing in on the age when most of my ancestors died from it.

    Last edited by ty123; 10-06-2004 at 12:43 PM.

     
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    Old 10-06-2004, 12:29 PM   #2
    ty123
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    Re: FH: Familial Hypercholesterolemia

    My own story:

    6 years ago I developd a fatty infused liver. My doctor prescribed a small dose of lipitor and advised a low fat diet. That's all I was told, except that my cholesterol levels were a tad high:

    351 total, and 657 triglycerides. I don't have the LDL and HDL record, but LDL must have been at least 175.

    I didn't take it very seriously, after the liver issue went away. I stopped taking Lipitor.

    In 2002 I had retired early and decided I should address the issue agressively. I did some research and went on an Ornish diet. Very low fat, exercise etc. Result:

    216 total 130 LDL 40 HDL 229 triglycerides

    Not exactly the numbers I was looking for considering I was living on twigs.

    My doctor put me on 20mg of Pravachol. I didn't retest until 2003:

    235 total 145 LDL 37 HDL 265 triglycerides

    Mind you, the above is after a year of medication, a strict low fat diet, and I lost nearly 50 pounds and was within only a few pounds of my optimal weight.
    This result is called "lipid bounce". Doctors don't know why, but in FH you can eat and exercise the same and suddenly get a lipid rise.

    This is the point where i realized I had FH and asked for more intensive treatment. I was put on 40mg of Pravachol, and 10mg of zetia. Here is my results at the beginning of this year:

    182 total 93 LDL 39 HDL 252 triglycerides

    After two solid years under doctor care, and working hard to improve diet and exercise...I was EXACTLY where I started in terms of MI risk given that my total to HDL ratio was only marginally changed.

    My doctor then doubled the Pravachol to the max dosage of 80mg along with the zetia. Here are the results from 2 weeks ago:

    178 total 113 LDL 34 HDL 157 trigs

    Not exactly moving in the right direction, eh? I went to a nurse practitioner (I'm in the stix) and she changed me to 40mg of Lipitor, and maintained the zetia. I suggested that a stronger dose of lipitor is indicated given my resistance to treatment and her response was, "this is what I do".

    So, I've dropped her like a bad habit, but I'm staying on the 40mg Lipitor and zetia as a test for 8 weeks, and then I've an appointment with a real doctor who will hopefully address things more aggressively. Meanwhile it seemed that 8 weeks could be a good test of tolerance to the new drug.

    My expectation is that 40mg of Lipitor and 10 zetia will perform about the same as or slightly better than 80mg of Pravachol, with a marginal increase in HDL from the drug. Trigs at least are nearly under control, and Lipitor may improve those as well.

    I test on November 8, and will post results here.

     
    Old 10-06-2004, 12:31 PM   #3
    ty123
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    Re: FH: Familial Hypercholesterolemia

    Here is my current weight loss diet (I'd regained some after depressing results) during the 8 weeks test on 40mg Lipitor and 10mg Zetia:


    1600 calories per day total
    Less than 30grams of fat per day 70%+ from mono/poly sources
    Less than 7 grams of saturated fat per day
    Zero grams of trans fat
    primary diet: plant foods, grains, legumes, fruit
    no meat, no dairy
    No table sugar or sugar treats (except fruit) although some in processed food

    Supplements:

    1.5 servings of Take Control plant sterol esters per day with meals
    1 cup per day of whole fat soy (soy milk)
    Minimum 30 grams of fiber (from cereals, legumes, and metamucil)
    Minimum 14 grams of soluble fiber (included in above)
    4 oz of red wine with meal

    The above diet is modified from Dr. Ornish's reversal diet which has been shown in studies to halt or reverse atherosclerosis. However, Dr. Ornish was not specifically studying people with FH.

     
    Old 10-06-2004, 12:38 PM   #4
    ty123
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    Re: FH: Familial Hypercholesterolemia

    As mentioned in the previous post my diet starts with Dr. Ornish's reversal diet. His diet has been shown to halt and even reverse atherosclerosis with no medications at all.

    However, Ornish is more or less silent on FH except to mention that several people in his diet study had genetic cholesterol problems and showed some reversal even though they were unable to get their cholesterol levels below 200 and into good target ranges.


    My Modifications:

    Ornish doesn't suggest calorie counting, but I'm goal oriented, and want to lose weight safely, but quickly, hence 1600 was picked as a daily calorie intake, and exercise was increased until I was burning 400 calories per day.

    Fat:
    Ornish makes an important point about fat: After you get the 6% or so your body needs, there is no requirement for more. Some dieticians suggest increasing monosaturated fats. That seems fine as a relacement for sat fat, but what is the positive of adding mono or poly fat except as a replacement? Better to reduce in general. Studys show that HDL can also reduce on a low fat diet. In most people this response is to the concurrent reduction in the amount of LDL, and so less HDL is needed. In FH that relationship is less clear, and efforts should be made to increase HDL.

    Take Control/Benecol:
    I've started taking 1.5/2 doses of this plant sterol ester per day because it acts as an agent in the small intestine to impede the reabsorption of cholesterol into the blood. It can easily be fit into the Ornish diet if you focus on his maximum fat recommendations for reversal.

    Metamucil:
    I'm taking 6 teaspoons a day after meals of the sugar free variety. The psyllium in Metamucil has been shown to provide a significant reduction in cholesterol. It uses a similar method to the prescription drug Colestipol, but with fewer side effects and a more modest result.

    Soy:
    I'm having 1 cup a day of plain soy milk per day for the isofavones and Omega 2.

    Alcohol:
    I have 1 drink per day. Usually red wine about 4 0z. Once or twice a week, I'll take a second drink. I drink only with or just before a meal.

    Alcohol has been proven to increase sensitivity to insulin. Insulin resistance is associated with HDL repression, and indeed ingesting alcohol does increase HDL.

    There is some controversy about that because HDL2 is thought to be the part of HDL that helps in LDL removal, and alcohol only increases HDL3 or at best only increases HDL2 marginally.

    What is clear though is that alcohol increases Apolipoprotein A levels about 10 per cent, thus increasing the efficiency of HDL. Alcohol in moderation clearly is a help. It is very funny that paper after paper that I read online suggests that alcohol is helpful, and yet most doctors cannot bring themselves to recommend taking it. That said, they can't resist telling you what the proper dose is!!!!

    They suggest one to two drinks per day. However I agree with Dr. Kenneth Cooper (of aerobics fame) that more than 10 drinks per week for most people will cause more problems than it helps.

    Carbs and triglycerides: One thing that can't be emphasized enough is the difference between simple and complex carbs. The latter are harder to digest, and thus they cause a slower insulin response and also cost more calories to break down. Aviod simple carbs, and also I've come to suspect that avoiding sugar is very important in FH, because many sufferers have Metabolic Syndrome as well.

     
    Old 10-06-2004, 07:27 PM   #5
    heart44
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    Re: FH: Familial Hypercholesterolemia

    Ty, Have you heard of :
    Why Animals Don't Get Heart Attacks - But People Do!
    Written by Matthias Rath, MD

    His main theory is that animal produce their own vitamin C and we don't.
    The three main nutrients [according to the doctor] we need to protect our hearts:
    Vitamin C 600 - 3,000 mg, L-Lysine 100 - 500 mg, L-Proline 100 - 500 mg.
    There a list of other vitamins, minerals, trace elements & other important cellular nutrients.

    Even if you just read the Intro [Chapters 2 through 10 for the complete picture]
    It will give you an overview of the doctor philosophy.

    You can ******** his entire book [.pdf] ~ Intro link below.

    Frankie

    Chapter 1 ~ Introduction
    ~ Mission to Eradicate Heart Disease
    ~ Ten Step Program for Natural Cardiovascular Health
    ~ Cellular Medicine: Solution to Cardiovascular Disease
    [Reproduction Authorization - Contact: MR Publishing, [email][email protected][/email]]
    [url]http://www4.******************.org/pdf-files/why-book/whybook_01_sep2003.pdf[/url]

    Asterisks keep popping up on preview post:
    Replace asterisks with 'dr rath foundation' and insert a dash in the spaces.

     
    Old 10-06-2004, 07:32 PM   #6
    heart44
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    Re: FH: Familial Hypercholesterolemia

    Ty,
    Forgot to mention Dr Rath did research with Dr Linus Pauling, who also believed these 3 nutrients [Vitamin C, L-Lysine, L-Proline] were critical to heart health.
    Frankie

     
    Old 10-07-2004, 08:35 AM   #7
    ty123
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    Re: FH: Familial Hypercholesterolemia

    I don't recognize all of the ingredients, but they mostly appear to be antioxidants. Antioxidants seem to be well established as to their effect, but not so well established with respect to their efficacy.

    They appear to be a positive adjunct to more primary issues of diet, exercise, and medication. With respect to high cholesterol I'd tend to rate nutriceuticals such as Benecol and Metamucil, and fish oil, since their efficacy is less subtle.

    Vitamin C, and natural vitamin E are both items I intend to add to my bag of tricks once my lipids are fully lowered and balanced.

     
    Old 10-07-2004, 10:08 AM   #8
    heart44
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    Re: FH: Familial Hypercholesterolemia

    Ty,
    There's an interesting paragraph titled:
    "Familial Hypercholesterolemia - Not as Risky as You May Think"
    At the end of this article: "The Benefits of High Cholesterol"
    Page all the way to the end of the article.
    http://www.************.org/moderndiseases/benefits_cholest.html
    Insert 'weston a price' all one word, in place of the asterisks.
    Your prognosis is very good.
    Frankie

     
    Old 10-07-2004, 10:53 AM   #9
    ty123
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    Re: FH: Familial Hypercholesterolemia

    LOL...yeah, people are just lining up to have high cholesterol.

     
    Old 10-07-2004, 11:14 AM   #10
    heart44
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    Re: FH: Familial Hypercholesterolemia

    Ty,
    Did it ever occur to you that the drug companies created imaginary diseases?
    My intent was to provide you with information on the PRO side, in view of the fact we are inundated with so much from the CON side.
    Frankie

    Last edited by heart44; 10-07-2004 at 11:15 AM.

     
    Old 10-07-2004, 11:23 AM   #11
    ty123
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    Re: FH: Familial Hypercholesterolemia

    "Did it ever occur to you that the drug companies created imaginary diseases?"

    No Heart it does not occur to me. As for being inundated, it is the low carb, conspiracy theory folks doing the inundating here. Now, if you've got something to say about FH other than you don't believe its a problem...post away, otherwise as I said at the beginning of this thread, Please don't post tiresome diatribes about drug conspiracies and low carb miracles. You're wasting your time. Or, if you're determined to do so, can you do it on another thread?

    Last edited by ty123; 10-07-2004 at 11:23 AM.

     
    Old 10-07-2004, 11:55 AM   #12
    heart44
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    Re: FH: Familial Hypercholesterolemia

    Quote:
    Originally Posted by ty123
    Now, if you've got something to say about FH other than you don't believe its a problem
    Sorry Ty, I didn't mean to imply that FH is not a valid problem.
    But there is evidence that cholesterol protects us as we age.
    High cholesterol when we are younger has a higher risk, then it
    does as we age.

    Last edited by heart44; 10-07-2004 at 12:16 PM.

     
    Old 10-09-2004, 10:09 AM   #13
    ty123
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    Re: FH: Familial Hypercholesterolemia

    Following Dr. Ornish's reversal diet as I do can be challenging. For those not familiar with it, it is a vegetarian diet consisting of 10%fat and the balance in protein and complex carbohydrates.

    Originally the diet allowed no oils whatsoever, since oil is 100% fat. Over time Ornish has modified that slightly to include 3 grams of fish oil per day, or alternatively a mix of fish oil and flax for women.

    Dr. Ornish also has comprehensive lifestyle recommendations that include exercise and meditation to reduce stress and improve cardio. All sound stuff, and his studies in actually reversing atherosclerosis are well documented.

    However, Dr. Ornish does not specifically address those of us with FH, that is genetically high lipid levels. He does indicate in his studies that several people in his studies achieved reversal without lowering their cholesterol below 200, but he's never made a study of FH, nor has he even attempted to explain why those individuals unable to reduce their cholesterol to acceptable progam levels (TC below 150) were successful.

    Also, except for fish oil, Ornish doesn't address nutriceuticals. There are a number of them, but I'm specifically referring to those that have been scientifically studied and shown to reduce lipid levels. Soluble fiber, and Plant Stanols/Sterols, and Alchohol which is not LDL lowering, but HDL raising, or at least Apo(a) raising. I also recommend that you search online for fish oil with significantly higher concentrations of EPA/DHA. I've found one with more than double the concentration of the one I had been using.

    Ornish's inferred advice to FH people is to eat like he does and hope for the best, but that doesn't give me the warm sort of feeling I'm looking for.

    Therefore, I've some advice for FH people:

    Take advantage of the fact that Ornish's "10%" program actually offers a margin of up to 2% additional fat.

    For example, My metabolism requires about 2200 calories a day to maintain weight, but I'm allowed up to 30 grams of fat (10 from sat. fat), that comes to 270 calories of fat. That's about 12.25% fat. I actually TRY and keep my fat level between 10-12% and use what I have left above 10% to enhance my lipid levels with nutraceuticals. I'll take an extra fish oil capsule, or an extra half dose of Benecol/Take Control for example.

    This way, I can stay within guidelines and augment lipid lowering.

    The Ornish approach lowers both LDL and HDL levels. That's okay in normal people because the lower HDL level is a response to the level required to remove a lower level of LDL. However, that situation appears less certain in FH sufferers where HDL levels don't just fall, they plummet. It is possible that Metabolic Syndrome as discussed below is the culprit. Therefore, while saturated fat levels should be taken to levels recommended by Ornish, it may be inadvisable to go any lower. Don't overacheive.

    Sugar, Alcohol, and Metabolic Syndrome:

    Dr. Ornish only comments that sugar is not significantly linked to heart disease, but that since they're empty calories they should be avoided. For FH'ers that situation appears to be very different. Most FH'ers have metabolic syndrome and the insulin resistance that goes along with it. Insulin resistance has been associated with a depressant effect on HDL.

    This means that the sharp insulin spikes created by sugar and simple carbs enhance the process engendering insulin resistance. Therefore it seems prudent to significantly reduce sugar intake, and to particularly minimize simple carbs in your diet.

    Alcohol has been shown to increase sensitivity to insulin. Red wine is the commonest recommendation, but apparently 1 drink a day of most any alcoholic beverage appears to help. I'd recommend staying away from mixed drinks that use a lot of sugar in them.

    Dr. Kenneth Cooper points out that more than 1 drink a day will put you in a category for illnesses resulting from too much alcohol, so while more than one drink appears to be beneficial from a lipid perspective, more probably isn't a good idea. It also isn't a good idea to save up your drinks for that weekend bender.

    When I removed most of the sugar from my diet (and eliminated remaining simple carbs) an amazing thing happened: my appetite dropped off significantly! Do I miss candy? God yes, but the benefit of abstaining is real.

    Statins:

    Dr. Ornish only recommends statins in severe cases. That recomendation is 10 years old , and I think it is not supported by current studies. Aggressive statin therapy has now shown results nearly as beneficial as his reversal diet. Ornish is right when he says that diet is the first line of defence, but if lipids don't respond appropriately (and in FH cases they usually don't), you should consider the addition of drug therapy to put you into a low risk category.

    Theoretically an Ornish diet combined with statin therapy should give the average person, let alone someone with FH the best chance to halt or reverse atherosclerosis. No studies combining the approach has ever been done.

    Halting and even reversing atherosclerosis is a demonstrated fact by both diet and medication. What is FAR from being demonstrated is whether study results can be effectively translated to John Q. Public. Still, on a personal level people should be aware of what they can do to take their best shot at getting and staying healthy.

    Low cholesterol levels don't appear to be the only safe levels. People with cholesterol above 200 seem to be well protected if their HDL levels are also high. However, raising HDL levels is problematic, and studies still indicate that a total cholesterol level of less than 150 is most beneficial. It may even prove out that at levels significantly below 150 that LDL/HDL ratios become much less important.

    Last edited by ty123; 10-09-2004 at 10:14 AM.

     
    Old 10-09-2004, 03:41 PM   #14
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    Re: FH: Familial Hypercholesterolemia

    Do you have any idea what Orish's weight is? He seems bone thin to me. I would LOVE to see him without a shirt.

    What are your stats, Mark? Is your weight stable or or you on a losing pattern? For most men 1600 calories a day very long term will result in a pretty underweight condition unless they are very old, very inactive, or very small!
    I know I would soon look skeletal even though I'm an old farte but 6'2".

    Have you held the 1600 calorie average for very long?

     
    Old 10-09-2004, 04:42 PM   #15
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    Re: FH: Familial Hypercholesterolemia

    I'm 6'3", I currently weigh just under 230, and I'm 50. I've been on that calorie diet since I started in June when I weighed almost 270. I'd actually be lighter now, but I've taken a trip or two, which makes it very hard to diet, and I also had problems early on before I cut the sugar way down. Once I cut the sugar down, keeping my calorie intake down was a snap.

    I treadmill between 1.5 and 3 hours per day, and a 3 mile per hour rate, but that is all I do. At this point I'm about 30 pounds overweight, and my waist is just under 45. When I get down to 199...my goal, my waist should be just under 40, and eventually settle at about 38". When I reach 38" I'll have taken A FOOT off of my waist.

    When I reach 199, I'll reduce my treadmill time to one hour per day, and my calorie intake can slowly come up to about 2500 a day.

    I have a multitude of reasons for losing the weight. Cholesterol, Metabolic Syndrome, general appearance, and oh yes...I've a herniated disc that would REALLY appreciate my being under 200.

    The sugar issue has been the biggest surprise for me. Man I miss the candy, but its effect on my was really bad. In fact, if I had a lot of sugar I would literally have a sugar hangover the next day. In one more month I get an 8 week check on my cholesterol, I'm I'm really expecting good things just from removing most of the sugar from my diet.

    Ornish is a thin guy, and his cholesterol is around 125.

     
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