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    Old 09-19-2004, 06:15 AM   #1
    ty123
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    Hypercholesterolemia, Familial

    I'm new to this board, and have something called Familial Combined Hypercholesterolemia. Familial Hypercholesterolemia, or FH is a disease that affects 1 in 500 in the U.S. I only found out that I had it through my own research. My doctor apparently knew, but never mentioned the term until I raised the issue. He should have.

    There seem to be many people here knowledgeable about cholesterol, but I've seen no discussion about this specifically, and some here may have this and not even be aware of it.

    There are two kinds, homozygous and heterozygous FH. If you have **** FH, you probably already know because your cholesterol levels range from 1000-3000, so high that cardio problems begin in the 20's. These individuals have only a very few working lipid receptors in their liver. These people are rare, on the order of 1 in 1,000,000.

    Hetero FH sufferers like myself are more common and have inherited the gene from only one parent. We have roughly half the number of lipid receptors that a normal person has. Our lipids range from 200-400.

    FH is very resistant to diet and exercise, and statins are less effective. Combined therapy is the only thing that can bring an FH patient down to normal or near normal levels. Usually maximum dosages are required.

    FH usually rears its head in the 4th decade, and is more pronounced in males.

    In subsequent posts I'll describe my own background, experiences and treatment as a starting point.

     
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    Old 09-19-2004, 06:39 AM   #2
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    Re: Hypercholesterolemia, Familial

    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.

    Last edited by mhtyler; 09-20-2004 at 08:48 AM.

     
    Old 09-19-2004, 06:54 AM   #3
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    Re: Hypercholesterolemia, Familial

    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:


    1700 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

    I'm adhering to the above strictly. My reasoning for the above in the next message.

    mark

     
    Old 09-19-2004, 07:31 AM   #4
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    Dietary reasoning

    The reasoning behind 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, I found his diet to be 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.

    His suggestion that if you follow the diet you can merrily go about your business and hope for the best under those conditions seemed unsatisfactory to me, especially since he had neither specifically studied FH patients, nor could explain reversal in the ones he had given their readings indicated they should not have.

    That said, a balanced low fat diet with little sat fat seems far more sensible than the voodoo of the atkins diet.

    Modifications:

    Ornish doesn't suggest calorie counting, but I'm goal oriented, and want to lose weight safely, but quickly, hence 1700 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. I've had dieticians actually suggest I increase my saturated fat!!! Insane! Many 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.

    Take Control:
    Having just said the above, I've started taking 1.5 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. I've used it before with no apparent results, but felt it was worth another try as long as I could fit it into my Ornish diet. Ornish forbids oils, but his diet predates this treatment.

    My one concern is that that Take Control REPLACED ordinary margerine or butter in clinical tests. That means some of the reduction may have been gained by not taking the Take Control at all and simply removing the butter. Still...at the 1.5 dose level I'm able to just fit it into my diet without exceeding recommended fat.

    Metamucil:
    I'm taking 6 teaspoons a day after meals of the sugar free variety

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

    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.

    Why? 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.

    My father told me when I was a kid that a glass of wine is good for the blood. He was exactly right!

    A final note:

    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. It is sooooooooo easy to start sneaking in simple carbs, because complex carbs are tougher to eat..in my opinion.

    I'm hoping that my trigs don't bounce too much or at all, but I'd trade a slightly higher trig level for a very low LDL level and an increased HDL level. We'll see.

    mark

     
    Old 09-19-2004, 08:36 AM   #5
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    Re: Hypercholesterolemia, Familial

    I'm AMAZED at your stamina, Mark. I wish I had the OOOMPH to try so low-fat a diet as Ornish or even Stillman...but lord, I love meat and cheese.

    I am pretty sure that the results of the 40 mg. Lipitor and 10 mg. zetia will blow you away especially combined with your fastidious dieting.

    I envy you the drink a day...for me it's either 0 drinks or a pint of Gibsons.

    I think I share your Famial hperlipidemia...My poor mother tried so hard just before statins were developed to get her cholesterol to decent results with absolutely no luck...and she died of progressive heart disease in spite of skim milk, egg whites, no cheese, a beer a day, and a life of low body weight. Without statins I'd be facing her fate.

    Continued good luck to you...and I'll keep your post for inspiration.

    BTW, depending on how you look at it there's not a lot of difference here
    Quote:
    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 HDL 34 HDL 157 trigs
    (I presume you mean 113 LDL in the second group) You've simply traded VLDL for LDL with similar risk, since that drop in Triglycerides off 95 equals about minus 19 VLDL and compares with the +20 LDL...I hope a bit clearer than mud

    Last edited by zip2play; 09-19-2004 at 08:47 AM.

     
    Old 09-19-2004, 08:56 AM   #6
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    Re: Hypercholesterolemia, Familial

    The drop in HDL was the bad part. my HDL has been steadily dropping, and a super low fat diet can do that, but I also had LOTS of fat free and low fat sugar treats and I definately have insulin resistance, so I'm hoping that new factor and the booze will help!

    Oh...and its easier to accomplish this sort of diet when you're retired early. I'm 50. When I traveled for work it was too hard.

    fingers crossed!

    mark

    Last edited by mhtyler; 09-19-2004 at 08:57 AM.

     
    Old 09-20-2004, 06:59 AM   #7
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    Re: Hypercholesterolemia, Familial

    Mark,

    Considering your current predicament, a combination of low HDL and elevated triglycerides, you may actually be a prime candidate for a low-carb diet, as opposed to a low-fat diet. A low-carb diet is most effective at lowering triglycerides while simultaneously raising HDL. Have you ever tried this type of diet before? Also, which supplements, if any, are you currently taking?

     
    Old 09-20-2004, 07:40 AM   #8
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    Re: Hypercholesterolemia, Familial

    The only supplements I'm taking are those listed early in the thread, although I omitted that I'm taking 3grams of fish oil per day. I've never seriously considered a low carb diet though, because the only two alternatives are protein and fat.

    I've got all the fat I need, and overloading on protein could be an issue too.

    Moreover, I've seen no studies in learned journals with respect to atkins-like diets achieving atherosclerosis reversal, whereas Dr. Ornish's studies on his diets are published and acknowledged.

    I admit though, that Ornish has made no study specific to FH, nor does he make an effort to explain why FH'ers will do well on his diet.

    I also believe that blood chemistry differs enough in people, that a low carb diet is definately right for some people, but them some people can eat bacon and eggs everyday and live to be 90. I wouldn't be one of those.

    What I do believe at present is that Dr. Ornish's diet, with the modifications that I've made may establish full RCT for me with the help of medications to balance my lipids.

    My theory is, that if I can lower LDL and RAISE HDL through meds and nutriceuticals respectively, then I can make Dr. Ornish's diet fit me and use it to reach a break even point on RCT, and thus reverse atherosclerosis, or at least halt it.

    I'm trying to level the playing field with respect to my FH.

    In my case, with half the number of cholesterol receptors, my options are somewhat different from the normal person who responds better to diet.


    Challenges:
    Few books focus on FH.

    Its been difficult to get doctors to take my problem as seriously as I do

    Results are disappointing, although I think I'm getting closer

    mark

     
    Old 09-20-2004, 01:02 PM   #9
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    Re: Hypercholesterolemia, Familial

    Mark,

    I have a few suggestions for you. First of all, I think it would be a good idea to take a CoQ10 supplement, preferably the hydrosoluble form known as Q-Gel. It absorbs better, and you will achieve higher blood levels with it.

    I really do believe that you should consider supplementing with high doses of vitamin C and vitamin E. Vitamin E helps prevent LDL from becoming oxidized, which is important. Although statins lower LDL, they also cause vitamin E levels in LDL to drop, and LDL in turn oxidizes more quickly than normal. A good dosage range would be between 400-800 units of natural vitamin E.

    Vitamin C is essential for the health of your arteries. An ample supply of vitamin C each day is required for this. A high enough intake of vitamin C is required in order to produce enough collagen. Collagen is essential to maintaining the strength and elasticity of your arteries. A sub-optimal intake of vitamin C can cause arteries to thin and weaken over time. As a result, lesions form inside the arteries, and that is when atherosclerotic plaque begins depositing at these sites. In a way, it's your body's way of repairing the damage that has occured. I would suggest taking at least 2000mg vitamin C each day. Vitamin C and vitamin E both help lower CRP, and they also help promote higher HDL levels.

    A couple of other supplements that I would recommend for increasing HDL would be lecithin and garlic. Try taking a couple tablespoons of granular lecithin each day. A garlic supplement, one which has been standardized to contain a minimum of 4000mcg allicin was shown to be effective in helping to promote higher HDL levels. A good quality pantethine supplement may also be helpful, such as those products which are made from a pharmaceutical grade pantethine (Pantesin). The Carlson brand and the EP Endurance brand contains such high quality pantethine. But whatever you decide, keep on taking that fish oil. Fish oil is excellent.

     
    Old 09-20-2004, 02:05 PM   #10
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    Re: Hypercholesterolemia, Familial

    Thanks for the suggestions on the supplements Arizona. I'll consider them carefully. I'm concerned about what I've read about CoQ10 because apparently it can negatively affect insulin resistance, and that is a key problem I'm having.

    I've been taking a multi vitamin, but had been taking the natural ....and I might add...expensive vitamin E 400iu until I moved 6 months ago and lost my supply. I should buy some more.

    I'd be interested to hear about your experiences with Niacin too. Do I understand correctly that you take it? Are you prescribed, or do it yourself?

    Despite all that I'm doing, I fully expect NOT to read well when I get my Nov 8 blood taken. I've been down this road many times, and I just don't have it right yet. Stronger statins may get me most of the way, but HDL is low.

    mark

     
    Old 09-20-2004, 07:44 PM   #11
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    Re: Hypercholesterolemia, Familial

    I first became interested in niacin when I read about it in the book "Life Extension", which was written by Durk Pearson and Sandy Shaw. This book was written nearly twenty five years ago, and in my opinion, they were about twenty years ahead of everyone else. It really is a fascinating book. I still have it, even though it is now held together with scotch tape. But yes, I do take niacin, and have been taking it for at least 15 years. I use an over the counter niacin product. I take 1000mg per day (a 250mg tablet taken 4 times throughout the day). I did not initially take it for a cholesterol-lowering effect, or for raising HDL. I was more interested in its vasodilating effects, as was mentioned in the book. At the time, I knew nothing about cholesterol. I use snuff, a tobacco product, which tends to constrict blood vessels because of the nicotine. Well, in the book, it said that niacin had the opposite effect, that it tended to dilate blood vessels. Well, I decided that it makes sense that since I am using tobacco, and it tended to constrict blood vessels, it would be wise to use niacin to reverse that process. And over the years, as I became more and more interested in cholesterol and heart disease, I noticed from my lab reports, which I had saved, that my HDL kept going up and up. And then it became very clear to me after reading about the effects of niacin. Oh yes, it certainly does raise HDL levels. I think I'm living proof of that. Will I continue to take it for the rest of my life? Oh yes, you bet I will. Yes, it still makes me flush sometimes, but I don't mind it. It's a small price to pay for what you can get in return.

     
    Old 09-21-2004, 06:43 AM   #12
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    Re: Hypercholesterolemia, Familial

    thx for that on niacin. You have the highest HDL levels I've personally heard of, and niacin is supposed to be the champ at that right now.

    I'm not going to start taking it right now, but its high on my list depending on how my blood work goes.

    mark

     
    Old 09-21-2004, 07:06 PM   #13
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    Re: Hypercholesterolemia, Familial

    Well, whatever you decide to do, I wish you well.

     
    Old 09-21-2004, 10:04 PM   #14
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    Re: Hypercholesterolemia, Familial

    Thx, I've heard that there is some non-flush form of Niacin that reduces the flushing aspect.

    I tried taking 500 once, and flushed so much I thought I might have to go to the hospital. That was my first and last attempt. It scared the hell out of me. Nevertheless, I may have to try it again. I'm far from certain that max statins and zetia will put me in the range I want.

    mark

     
    Old 10-02-2004, 02:19 PM   #15
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    Re: Hypercholesterolemia, Familial

    Thread on FH.

     
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