Lipoprotein testing

This is an update of a post I made about a year ago. However, I'm reposting it since the question comes up so often.


How can I get my lipoproteins tested?
This question came up on our recent online chat session and comes up frequently phone calls and e-mails.

If lipoprotein testing is the best way to uncover hidden causes of coronary heart disease, but your doctor is unable, unknowledgeable, or unwilling to help you, then what can you do?

There are several options:

1) Get the names of physicians who will obtain and interpret the test for you. That’s the best way. However, it is also the most difficult. Lipoprotein testing, despite over a decade of considerable scientific exploration and validation in thousands of research publications, still remains a sophisticated tool that only specialists in lipids will use. But this provides you with the best information on you’re your lipoproteins mean.
2) If you don’t have a doctor who can provide lipoprotein testing and interpretation, go to the websites for the three labs that actually perform the lipoprotein tests: www.liposcience.com (NMR); www.berkeleyheartlab.com (electropheresis or GGE); www.atherotech.com (ultracentrifugation). None of them will provide you with the names of actual physicians. They can provide you with the name of a local representative who will know (should know) which doctors in your area are well-acquainted with their technology. I prefer this route to just having a representative identify a laboratory in your area where the blood sample can be drawn, because you will still need a physician to interpret the results¾this is crucial. The test is of no use to you unless someone interprets it intelligently and understands the range of treatment possibilities available. Don’t be persuaded by your doctor if he/she agrees to have the blood drawn but has never seen the test before. This will be a waste of your time. That’s like hoping the kid next door can fix your car just because he says he fixed his Mom’s car once. Interpretation of lipoproteins takes time, education, and experience.

3) Seek out a lipidologist. Lipidologists are the new breed of physician who has sought out additional training and certification in lipid and lipoprotein disorders. Sometimes they’re listed in the yellow pages, or you can search online in your area. One drawback: Most lipidologists have been heavily brainwashed by the statin industry and tend to be heavy drug users.

4) Contact us. I frankly don’t like doing this because I feel that I can only provide limited information through this method and, frankly, it is very time consuming. I provide a written discussion of the implications and choices for treatment with the caveat to discuss them with your doctor, since I can’t provide medical advice without a formal medical relationship. We also charge $75 for the interpretation. But it’s better than nothing.

5) Make do with basic testing. Basic lipids along with a lipoprotein(a), C-reactive protein, fibrinogen, and homocysteine would provide a reasonable facsimile of lipoprotein testing. You’ll still lack small LDL and postprandial (after-eating) information, but you can still do reasonably well if you try to achieve the Track Your Plaque targets of 60-60-60. It’s sometimes a necessary compromise.

Our discussions on the Track Your Plaque Forum have impressed me with the difficulty many people encounter in getting lipoproteins drawn and interpreted. Some of our Members have been very resourceful identifying blood draw laboratories around the country, such as Lab Safe, that will at least provide the blood draw service.

I wish it was easier and we are working on some ideas to facilitate this nationwide. It will take time.

In 20 years, this will be a lot easier when doctors more commonly use lipoprotein testing. But for now, you can still obtain reasonably good results choosing one of the above alternatives.

Is it exercise or diet?

Wayne, a 61-year old retired school superintendent, had been an exercise fanatic all his adult life. If not running long distances and occasional marathons, he'd bike up to 70 miles a day. He did this year-round. In cold weather, he set his bicycle up on an indoor device and also ran on a treadmill and added weight training.

That's why it was kind of surprising that he sported a large belly. At 5 ft 8 inch and 190 lbs, that put his Body Mass Index (BMI) also high at 28.8 (desirable <25). You'd think that vigorous, almost extreme, exercise like this would guarantee a slender build.

Wayne also had lipoproteins to match: triglycerides 205 mg/dl, LDL 176 mg/dl but LDL particle number much higher at 2403 nmol/l (an effective LDL of 240 mg/dl); 75% of LDL particles were small.

I asked Wayne about his diet. "I eat healthy. Cheerios for breakfast usually. Some days I'll skip breakfast. Lunch is almost always a sandwich: tuna, turkey, something like that on whole wheat bread or a whole wheat bagel. Chips, too, but I guess that's not too healthy. Dinners vary and we eat pretty healthy. Almost never pizza or junk like that."

"Pasta?" I asked.

"Oh. sure. Two or three tiems a week. Always whole wheat. With a salad."

Wayne was well aware of the conventional advice for whole grains and, indeed, had been trying to increase his intake, particularly since his basic cholesterol numbers had been high in past. To his surprise, the more he tried at diet, the more LDL seemed to go up, as did triglycerides.

I see this situation every day: The obsession with processed carbohydrate foods, worsened by the message perpetuated by the American Heart Association, the USDA Food Pyramid, Kraft, Kelloggs, Post, etc. Eat more fiber, eat whole grains.

NY Times columnist, Jane Brody, chronicles her (embarassing) mis-adventure following the same mis-guided advice in Cutting Cholesterol, an Uphill Battle.

According to the USDA Food Pyramid, Wayne is not getting enough grains and whole grains, particularly since he is highly physically active. Consistent with the message given by the food industry: "Eat more!"

The food industry-supported Whole Grain Council advises:

Whole Grains at Every Meal
The US Dietary Guidelines recommend meeting the daily requirement by eating three "ounce-equivalents" of breads, rolls, cereals or other grain foods made with 100% whole grains. A slice of bread or a serving of breakfast cereal usually weighs about an ounce.

Want an easier way to think about it? Just look at your plate at each meal, and make sure you've included some source of whole grains. That's why our slogan is "Whole Grains at Every Meal."



By this scheme, if you are overweight, it's because you lack fiber and you're too inactive. "Get up and go!" It's not the diet, they say, it's you!

See through this for what it is: Nonsense. Wayne was overweight, packing 20 extra pounds in his abdomen from his over-dependence on processsed carbohydrates--"whole grains"--not from inactivity.

Instant heart disease reversal


What if reversal of heart disease--regression of coronary atherosclerotic plaque--were achievable instantly? Just add water and--voila!!

To my knowledge, it is not--yet. But I sometimes play with this idea in my head. I could imagine that such a program would consist of a few essential elements:

--A fast or semi-fast, or at least a very spare diet, over a period like 10 days to promote net catabolism. It is also supremely anti-inflammatory to restrict calories.

--High-dose vitamin D, e.g., 20,000 units per day of D3 to fully replenish depleted stores and achieve all the metabolism-correcting effects of D3 restoration.

--EPA + DHA at a higher than usual dose with frequent throughout-the-day dosing to encourage replacement of cellular lipid constituents with the more stable omega-3 fraction of fatty acids.

Beyond this, I'm uncertain. What role l-arginine, statins, niacin . . . conjugated linoleic acid? ApoA1 Milano infusions?

This is simply whimsical at this point. I don't know if such an approach would work. But if it did, you might imagine that it would offer an opportunity--for the properly motivated--as an alternative treatment for angina, advanced coronary disease, a means to pull someone back from the brink.

With the insights gained from our slow-but-powerful Track Your Plaque approach, perhaps we will also gain insights into how to accelerate such a process of reversal so that it is achievable in days, rather than months or years.

The small LDL epidemic

Ten years ago, small LDL was fairly common, affecting approximately 50% of the patients I'd see. For instance, an LDL particle number of 1800 nmol/l would be 40-50% small LDL in about half the people.

But in the last few years, I've witnessed an explosion in the proportion of people with small LDL, which now exceeds 80-90% of people. The people who show small LDL also show more severe patterns. 80-90% small LDL is not uncommon.

Why the surge in the small LDL pattern? Two reasons: 1) The extraordinary surge in excess weight and obesity, both of which favor formation of small LDL particles, and 2) over-reliance on processed carbohydrates, especially wheat-based convenience foods.

The constant media din that parrots such nonsense as the report on CNN Health website, Healthful Breakfast Tips to Keep You Fueled All Day, helps perpetuate this misguided advice. The dietitian they quote states:

"If you don't like what you're eating, you won't stick with it. If your choices aren't the most nutritious, small tweaks can make them more healthful. For example, if you have a sweet tooth in the morning, try a piece of nutty whole-grain bread spread with a tablespoon each of almond butter (it's slightly sweeter than peanut butter) and fruit preserves instead of eating foods that offer sweetness but little nutritional benefit, like doughnuts or muffins. If you enjoy egg dishes but don't have time to prepare your favorite before work, try microwaving an egg while toasting two slices whole wheat or rye (whole-grain) bread. Add a slice of low-fat cheese for a healthful breakfast sandwich that's ready in minutes. And don't overlook leftovers. If you feel like cold pizza (which contains antioxidant-filled tomato sauce, calcium-rich cheese, and lots of veggies), have it. It's a good breakfast that's better than no breakfast at all."

It sure sounds healthy, but it's same worn advice that has resulted in a nation drowning in obesity. The food choices advocated by this dietitian keep us fat. It also perpetuates this epidemic of small LDL particles.

If you have small LDL and its good friend, low HDL, it's time for elimination of wheat products, not some politically-correct silliness about increasing fiber by eating whole grains. Whole grains create small LDL! Or, I should say, what passes as whole grains on the supermarket shelves.

For some helpful commentary on this issue, see Fanatic Cook's latest post, Playing with Grains.

Mini-dose CTA?

I caught this little news report in the online edition of Canyon News , an LA paper, under the title Cedars-Sinai Develops Test to Prevent Heart Attacks .

They report that Dr. Daniel S. Berman M.D., chief of Cardiac Imaging and Nuclear Cardiology at Cedars-Sinai, reports that a new method of performing CT coronary angiography, "mini-dose CTA," has been developed that allows both coronary calcium scoring as well as CT coronary angiography (CTA) at a dose as low as 10% of standard dose. No technical details were provided.

Now, that may be worth knowing more about. If this is true, then CTA may indeed be useful as a "screening" procedure. However, we are going to need to know more: What devices are capable of doing this, what settings on the devices were used, etc. It does indeed come from a reputable source in Dr. Dan Berman, who is well known in nuclear cardiology circles.

We will try and dig for info. Stay tuned.

Wheat-free and weight loss

With a heart scan score of 1222, Leslie could be in deep trouble in short order.

At 64 years old, Leslie had gained nearly 40 lbs since she'd given up a lot of her activities caring for a husband who'd developed psychological difficulties and stopped contributing to the household duties. A tall woman at 5 ft 9 inches, she held her 202 lbs well, but her lipoprotein patterns were a disaster:

--LDL particle number 2482 nmol/l--an equivalent LDL cholesterol of 248 mg/dl (drop the last digit)
--HDL 38 mg/dl
--Triglycerides 241 mg/dl
--90% of LDL particles were small
--Lipoprotein(a) 240 nmol/l

Blood sugar was in the pre-diabetic range at 112 mg/dl, C-reactive protein was high at 3.0 mg/l, blood pressure was somewhat high at 140/84.

Now, with the exception of lipoprotein(a), these patterns are exquisitely weight-sensitive. A reduction in weight would yield effects superior to any medication I could give her.

Processed wheat products were a big problem for Leslie: whole wheat bread, pretzels for snacks, whole wheat pasta. Yes, they sound healthy, even endorsed by the American Heart Association, often bearing "heart healthy" labels on the packages. Don't you believe it.

In particular, Leslie had the number one cause for heart disease in America: small LDL particles, a pattern that is magnified 30-70% by wheat products. Endorsed by the Heart Association? (As I often tell people, if you want heart disease, follow the diet advocated by the American Heart Association.)

Leslie was skeptical, worried that she would be hungry all the time and would have virtually nothing left to eat. Instead, when she returned to the office three months later, she reported that eating was easy, finding healthy foods not containing wheat was easier than she thought, she felt great, finding more energy than she'd had in years.

She'd also shed 30 lbs.

Leslie's lipoprotein patterns also reflected the weight loss. She achieved her 60:60:60 Track Your Plaque lipid targets, small LDL shrunk dramatically, blood sugar and blood pressure were back in normal ranges.

I see results like Leslie's several times every week. For those of us with patterns like Leslie's, or just obesity that accumulates in the abdomen, going wheat-free is among the most powerful single strategies I know of.

If you need convincing, try an experiment. Eliminate--not reduce, but eliminate wheat products from your diet, whether or not the fancy label on the package says it's healthy, high in fiber, a "healthy low-fat snack", etc. This means no bread, pasta, crackers, cookies, breads, chips, pancakes, waffles, breading on chicken, rolls, bagels, cakes, breakfast cereal. I find elimination of wheat easier than just cutting back. I believe this is because wheat is powerfully addictive. It's very similar to telling an alcoholic that a drink now and then is okay--it just doesn't work. They need to be alcohol-free. Most of us need to be wheat-free, not just cut back.

You won't be hungry if you replace the lost calories with plenty of raw almonds, walnuts, pecans, sunflower and pumpkin seeds; more liberal use of healthy olive oil, canola oil and flaxseed oil; adding ground flaxseed and oat bran to yogurt, cottage cheese, etc.; and more lean proteins like lean beef, chicken, turkey, fish, and eggs.

The majority of people who go wheat-free lose weight, sometimes dramatically. Most people also feel better: more energy, more alert, better sleep, less mood swings. Time and again, people who try this will tell me that the daytime grogginess they've suffered and lived with for years, and would treat with loads of caffeine, is suddenly gone. They cruise through their day with extra energy.

Even without weight loss, going wheat-free usually raises HDL, reduces the dreaded small LDL dramtically. It also reduces triglycerides, blood sugar, C-reactive protein, blood pressure. Blood sugar control in diabetics is far easier, with less fluctuations and sharp rises in blood sugar.

Success at this also yields great advantage for your heart scan score control and reversal efforts.

Collective wisdom


As public consciousness and knowledge about health issues grows, thanks to the internet and other media, I predict that:

1) Hospitals will recede into a role of acute and catastrophic care ONLY, dropping the charade of providing health, which they do NOT.

2) Doctors and other health professionals will begin to see themselves as providers of acute and catastrophic care, also. They will stop providing day to day care, such as treating high blood pressure, cholesterol, breast exams, and other preventive maintenance.

3) Instead, preventive care will be self-provided. The public will have acquired sufficient savvy and know-how to manage issues like blood pressure themselves. They will need the assistance of helpful information resources, web-based for the most part. Much preventive care can, in fact, be algorithm-driven, just like following a simple recipe.

All the worries about runaway health care costs will be much reduced, since excessive testing driven by liability worries will disappear, repeated office visits for day-to-day issues will go away. Yes, you will need a doctor and hospital for a broken leg, car accident, unexpected cancer, or non-compliance or neglect of prevention.

But osteoporosis, high blood pressure, nutrition, weight loss, hormone management, cholesterol issues, minor complaints will all be managed by people themselves with the assistance of web-based knowledge systems.

I already sense this sort of phenomeonon developing, though in its infancy, in venues like the Track Your Plaque Forum and other health portals, places where the information being discussed exceeds the quality of information you can obtain from your doctor. Over and over again, for instance, the sophistication and knowledge demonstrated by our Track Your Plaque Forum discussions shows that the public is capable of far more understanding of health issues than many previously believed. Most of our members could carry on a credible conversation with trained lipid experts. The knowledge base of our members exceeds that of 98% of most of my colleagues when it comes to heart scans, lipoproteins, and nutrition.

I am in awe of Wikipedia, the popular online encyclopedia. Five 20- and 30-somethings have created a knowledge base that has now eclipsed Encyclopedia Britannica in size and scope, with equivalent accuracy, and relatively little cost. I'd like to see the same phenomenon occur in health care information, helping to usurp the current paternalistic "I'll tell you what to do" model.

Success--Slow but sure

John is a gentleman.

At age 76, he continues to teach at a local college. He's a delight to talk to, having written several scholarly books on religious topics. He's a fountain of knowledge on religious history and the roots of faith.

John is one of those incurably optimistic people, always greeting me with a smile and a warm handshake. I can't help but linger for a hour or so to talk with John, unfortunately disrupting my office schedule miserably.

John is another Track Your Plaque success story. Though he didn't set any records in reduction of his heart scan score, he did it simply by adhering to the program over a period of two years, succeeding slowly but surely.

John's first heart scan score: 1190, a score that carries as much as a 25% annual risk for heart attack. Among the list of causes was an LDL cholesterol in the 170 mg/dl range, along with an LDL particle number that verified the accuracy of LDL.

Among John's suggested treatments was a statin drug, since I was not confident he could reduce LDL with diet and nutritional modifications sufficiently to safely reduce both LDL and his risk for heart attack. But he proved terribly intolerant to any dose of any statin, with incapacitating and strange side-effects, like head-to-toe itching, abdominal cramps and diarrhea. It was clear: John needed to do the program without benefit of a statin drug.

I therefore asked John to maximize all efforts that reduce LDL, 70% of which were small LDL paricles despite his very slender build. He used oat bran and ground flaxseed daily, raw nuts, a soy protein smoothie every morning, and eliminated wheat and other high-glycemic index foods (including the Oreos he loved to snack on). Because the mis-adventures with statin drugs wasted nearly a year, I asked John to undergo another heart scan. Score 2: 1383, a 16% increase.

I asked John to keep on going. Thankfully, he did manage to tolerate fish oil, niacin (though it required over a year just to get to a 1000 mg per day dose), and vitamin D. With all these efforts, he did reduce LDL to the 80-90 mg/dl range. Of course, John's unflagging optimism was crucial. He did express his occasional anxiety over his heart scan score, but dealt with it in a logical, philosophical way. He understood that there was no role for prophylactic stents or bypass, and he accepted that much of his program rested on his ability to adhere to the strategies we advised.

Another year later, a 3rd heart scan: 1210, a 12% reduction.

I'm very proud of John and his success. When you think about it, he succeeded in conquering heart disease with some very simple tools, minus statin drugs. It can be done, but requires consistency and patience--and an optimistic outlook.

Vitamin D and octagenarians

Roger practically bounced in his chair vibrating with energy.

"It must be the vitamin D! I haven't felt like this in years. I can work around the yard all day and still have energy left over."

At age 84, Roger started out with pretty good health, despite a prosthetic valve and bypass surgery 5 years earlier. He looked 74, perhaps younger.

I've seen this effect now in about 20 octagenarians. A Track Your Plaque Member mentioned this same effect in his father-in-law in a discussion in our Forum. Most are taking around 6000-8000 units per day (gelcap, of course). The average dose of vitamin D tends to be higher in this age group, since by age 80, you've essentially lost the capacity to convert 7-hydrocholesterol to active vitamin D3 in the skin. Most octagenarians start with 25-OH-vitamin D3 levels of 10 ng/ml or less--profound deficiency.

I believe the effect is real, having now witnessed it multiple times. Unfortunately, my observations are too informal to qualify as a study. (I wouldn't even know how to quantify this. I suppose some sort of muscle and coordination testing might yield quantifiable measures.) However, there are some data emerging that show less fractures, falls, improved coordination, and perhaps improved memory and mentation with vitamin D supplementation, though doses often used in studies tend to be lower than what we are using in practice.

I haven't been so excited about the effects of a nutritional supplement in a long time. Vitamin D continues to yield surprises every day in its array of positive and powerful effects.

Could we say that vitamin D restores youthfulness?
Wacky statin effects

Wacky statin effects

In general, I try to exhaust possibilities before resorting to the statin drugs. But we still do use them, both in general practice and the Track Your Plaque program.

There are indeed a number of ways to reduce, minimize, or eliminate the need for these drugs. For instance, if your LDL is 150 mg/dl but comprised of 90% small particles, then a reduction in wheat and other high-glycemic index foods, weight loss, fish oil, and niacin can yield big drops in LDL.

But sometimes we need them. Say LDL is 225 mg/dl and is a mix of large and small. Exercise, weight loss, niacin, oat bran, ground flaxseed, Benecol, etc. and LDL: 198 mg/dl. Alright, that's when statins may be unavoidable. There's also many people who are not as motivated as all of us trying to reverse heart disease. Some just want the easy way out. Statins do indeed provide that option in some people.

So in truth, we end up using these drugs fairly regularly. How common are muscle aches and fatigue? In my experience, they are universal . If taken long enough, or if high doses are used, muscle complaints are inevitable. Most of the time, thankfully, they're modest and often relieved with a change in drug or with coenzyme Q10 supplementation.












But there's more to statin side effects than muscle aches. Among the wacky effects that I have witnessed with statin drugs:

--Insomnia-especially with simvastatin (Zocor and Vytorin). Insomnia can be quite severe, in fact, with difficulty sleeping more than 3-4 hours a night.

--Bone aches--I don't know why this happens, unless it's somehow related to muscle aches. I've seen this with all the statins, but more commonly with Crestor.

--Memory impairment--a la Dr. Duane Graveline's wacky book, Lipitor: Thief of Memory. I've seen this with Lipitor, though it's uncommon, and less commonly with simvastatin (Zocor, Vytorin).

--Diarrhea--More common with Zetia and Vytorin (which contains Zetia), because of the inhibition of bile acid reabsorption.

--Migraine headaches--This I certainly do not understand, but the cause-effect relationship is undoubtedly true in an occasional person.

--Low libido--In men more than women, though it may be more due to men being more willing to admit to it.

--Increased appetite--Rare, though I've seen dramatic instances.

--Tinnitus--Ringing in the ears. I've only seen it with Lipitor and Zocor.


In their defense (and in general I am no defender of the drug manufacturers), most people do fine with statin drugs, though the majority do eventually require coenzyme Q10 in my experience. By the way, coenzyme Q10 can be an indispensable aid to help tolerate statin agents.

I'd love to hear about your wacky experiences.

Comments (18) -

  • Anonymous

    9/23/2007 2:26:00 PM |

    It was the craziest thing, my elbows felt like they needed to pop but couldn't.  I was taking 20mgs of Zocor, and the first couple of months the elbows were fine, but one day I realized they hurt and wouldn't pop.  I enjoy tennis and will occasionally shoot baskets with the boys - working elbows are a requirement for both sports.  I told my doctor the problem and he said to stop taking Zocor, and after two weeks he will have me try a different statin.  Avoiding Zocor brought relief.  After a week of being statin free the elbows stopped aching.    

    I havn't gone back to my doctor to receive a prescription for that new statin.  After learning more about heart disease prevention from this sight and others, my starting LDL was low to begin with right around 80, and so decided to take a different natural approach to lower my LDL and more importantly for me raise HDL.  I cleaned up my diet and began taking nutritional supplements.  It worked, today cholesterol levels are great, and I have working elbows.

  • DietKing2

    9/23/2007 3:27:00 PM |

    When I first started on Lipitor 20mgs a few months back I suffered from 'Lipitor Leg'; that dull, annoying pain that plays hide-and-seek in and about the calf and thigh muscle.  And of course, only one leg, too.  Weird, nu? But it went away when I doubled my intake of CoEnzyme Q10 from 150mgs to 300mgs daily. (yeah, I don't like taking chances on being stingy)
    I could easily blame the Lipitor I'm taking for my short-term memory issues, but I'm hesitant to pass absolute judgment as of yet, only because of the tremendous amount of reading/researching I do daily combined with the fact that I sometimes have my head up my ass, and it causes me to forget stuff.  I'll keep you posted.
    And you keep posting this fantastic stuff, too!
    AdamWink

  • JoeEO

    9/23/2007 4:21:00 PM |

    I have experienced the muscle aches, absent mindedness and what I believe to be severe GERD. The GERD symptoms where so severe that I stopped taking Lipitor (20 MG) a month ago.

    Dr Davis - have you tried Q.O.D. administration of longer acting statin? There is a cardiologist in Hartford CT (PD Thompson) who  
    has found that Q.O.D.  administration of statins "significantly improves serum lipid levels" (PUB MED ID 16230873)

    Peace,

    Joe E O

  • Dr. Davis

    9/23/2007 5:49:00 PM |

    Hi, Joe-

    No, I didn't know that!

    Sounds like an interesting strategy. I think it's worth a try.

  • Anonymous

    9/24/2007 5:00:00 PM |

    After taking Lipitor 10mg for a few days I developed an occasional pain in the back of my right eye.  Since I had never had a pain like that before I stopped taking it and the pain disappeared a few days later, never to return.  Although my cardiologist said he had never heard of anything like that, I found several people on the internet who reported having varying types of vision-related reactions.  It's fairly obvious that some people do have strange reactions.  Years ago, when it was a prescription drug, I once took Claritin and thought I was going to die when my airway started to close down.  Now (don't laugh) I'll only take a new drug in the parking lot of the hospital!  Thinking you won't be able to breathe might do that for you.  Fortunately I don't really have to take any drugs   ...   yet.
            TYP member:  the164club

  • Dr. Davis

    9/24/2007 10:39:00 PM |

    Add another wacky side-effect to the list!

  • Cindy Moore

    9/25/2007 4:23:00 AM |

    Wacky? Well, I'm not sure how memory loss, muscle and bone pain, and debilitating diarrhea can be considered "wacky", but yea, I had them and more...how about severe depression? For the first time in my life I would cry at the least thing and had to force myself out of bed and do anything!!

    I'm sorry. Wacky? That isn't a term I'd use for the side effects that I and many others experienced.

    For those of us that have had severe reactions to these drugs it is very difficult to get your doc to understand and believe. My doc actually laughed at me!! Many are ignored when they complain about muscle and bone pain....then when it gets unbearable they sometimes will quit the drug. Others have what appears to be permanent peripheral neuropathy as a result of statins and their effect being ignored. Having a physician, and an apparently fairly well known one, call these side effects "wacky" minimizes what many have gone thru and makes it harder for others to convince their docs!

  • Tom

    11/17/2007 3:50:00 AM |

    Two weeks after I started 10mg/day of Lipitor I developed tinnitus.  I had never noticed a ringing in my ears before and now all of a sudden it was LOUD.  After three months I saw my doctor for a cholesterol retest (it went way down) and complained of the tinnitus.  He said he hadn't heard of this side effect, but I told him the web said 2% complain of it.  He suggested I go to 5mg/day to see if it helped.  I tried this for a few months, then went totally off for a few weeks, and the tinnitus got better, but never went away.  I'm still on a 5mg dose after 9 months and I still have tinnitus.  My fear is that the damage is done and the tinnitus will never go away.

  • Anonymous

    3/13/2008 2:45:00 AM |

    Other bloggers: you might have something about the tinnitus. I had been plagued by tinnitus a few years ago - unrelated to statins - eventually it went away. I suspect medications. However, six days ago I began 5 mg simvastatin and the tinnitus came back, same sort of noise, same annoying level or volume. Dr. Davis mentioned tinnitus and Zocor in his "wacky" side effects posting. Maybe not so wacky, huh?

  • Veedubmom

    4/6/2008 1:50:00 AM |

    I got sun sensitivity from taking Simvastatin.  Wherever my skin is exposed to the sun, it turns red and starts itching intensely and my skin looks like giant hives.  I have to wear long sleeves, gloves, turtlenecks, etc.  

    Has anyone else ever had this side effect?

    Veedubmom

  • jegan

    1/25/2009 4:26:00 AM |

    I was on Lipitor, but as a result of teh recent study, asked to go on Simvastatin. I too have never suffered tinnitus until taking statins. I perceive it most at night. It sounds either like e pure high pitched white noise, or often like being stuck in an aviary with a million high pitched birds. I did not suffer any pains, but I clearly am more forgetful. I also feel depressed, and really don;t care about anything.. Paying bills, family, cleaning, you name it. Also, my rosacea seems to act up a lot more.

  • Brian

    2/27/2009 1:02:00 PM |

    I started Zocor 2 weeks ago and have ringing in right ear. Somtimes irs loud. I also had dizzyness and feeling of confusion the 1st week. Insomnia too.

  • UrbaneGorilla

    2/28/2009 4:00:00 AM |

    I don't know why there is no real documentation on these type of statin side effects. I'm guessing that there is too much money behind the labeled products.

    To sum up:

    I started taking statins a couple of years ago. A friend told me that he heard that they caused altzheimers-like symptoms. I didn't think that I exhibeted any effects like that, so I pretty much ignored it, except to raise the issue with my doctor.

    During the last two years, I gradually lost interest in pretty much everything. It wasn't that I was forgetful, I just didn't much care about anything. Didn't care about my hobbies, quit my job, only paid bills when I felt like it, left a rental property vacant for 1 1/2 years and other similar issues.

    I am normally a pretty active person with lots of pursuits. When I spoke to my doctor about my 'lack of interest and motivation', she suggested putting me on testosterone and later a mood enhancer. (I'm 60 and I lost my wife to breast cancer about 3 years ago, so I guess the thinking was either that I was going through male menopause or just depressed over her passing.)

    Although I never had the muscle aches or liver problems that are considered the side effects of statins, gradually, I began to feel weaker (not uncommon at 60) and more lackadaisical in my approach to bills and  responsibilities. I also began suffering continual intense tinnitus and insomnia. I became crankier and more vehement in my dealings with other people and dangerously aggressive while driving.

    Oddly enough, my lack of concern with paying bills led to the pharmacist telling me that Blue Shield had canceled me. Although I could easily have called the doctor for a prescription for $5 statins through KMart, I just couldn't be bothered, so I discontinued my medication.

    It's been about 2 1/2 weeks since my prescription ran out. Within 4 days I began feeling better and my thinking became clearer. I no longer have tinnitus, my good mood has returned and I **actually** accept  life's small annoyances again. Finally, I feel better physically and am more motivated. (Unfortunately, now I have to clean up all the financial garbage I've accumulated in the last year or so.)

    If you take statins and begin to suffer any of the symptoms that I've noted above. **Tell** your doctor to take you off for a month. If your symptoms improve, you'll know why.

    Although I no longer have medical insurance, one requirement of the coverage was that my cholesterol be controllable with statins. I'd rather have a heart attack or stroke and die than to go back to being the useless walking zombie that I was.

    John B. Egan
    Grass Valley,CA

  • UrbaneGorilla

    2/28/2009 4:05:00 AM |

    Just want to add that I've changed my screen name. This post was an update to my prior January 24, 2009 post as jegan.

    What can i say. I feel more inventive these days.

    jegan aka Urbanegorilla. Wink

  • Anonymous

    1/4/2010 9:44:00 PM |

    My father has been on Lipitor for close to two years now.  He's getting almost daily "light-headed" symptoms (sometimes several times a day) where he explains that he becomes disoriented.  He'll ask me what day of the week it is.  Or completely forget a conversation we would just have.  It all comes back after a few minutes; but still very scary. As one commenter said, I too have been having trouble convincing people of his symptoms.  Doctors downplay it (and they shouldn't.  No matter how small the group experiencing this).  I'm trying to convince him to get off the statins and instead adopt a strict diet (no wheat/sugar etc. and lots of fish oil). He wont listen.  Does anyone know if this side effect can worsen with continued use? Can I have him take something (CoQ10)that may help lessen symptoms?

    -concerned son

  • UrbaneGorilla

    1/4/2010 10:58:43 PM |

    In response to anonymous who's father is suffering mental issues.. My doctors had no idea that depression, memory problems, unusual spontaneous anger and lack of interest could be caused by statins. My opinion is that pharma is not interested in publishing these matters. Why would they? They make a ton of money selling the products.

    If I hadn't forgotten to pay my Blue Cross bill I would never have known the difference as I was truly in a daze. Not only did I forget to pay the bill, but I couldn't develop enough interest to call either Blue Cross, or my doctor for a new prescription so I could go buy statins at KMart for $4.

    Tell your dad's doctor to take him off the drugs for 2 weeks..See how he feels after that time. He won't have a heart attack in that period but he may well recover as I did.

    Having said that, I still only feel partly improved but considerably so over my fugue state.

  • buy jeans

    11/2/2010 9:15:00 PM |

    In their defense (and in general I am no defender of the drug manufacturers), most people do fine with statin drugs, though the majority do eventually require coenzyme Q10 in my experience. By the way, coenzyme Q10 can be an indispensable aid to help tolerate statin agents.

  • simvastatin side effects

    5/8/2011 8:18:45 AM |

    As we all know, statins reduce the problem of people suffering from high cholesterol level. Some side effects of this drug may be eliminated with the help of coenzymes.

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