Do You Have FH?

The cholesterol-watching world is filled to the brim with acronyms and easily confused verbiage.  Who can remember what LDL and HDL stand for – much less which is the good and which is the bad cholesterol?  And then there’s Apo-B and LDL particle size to boot. But today I learned one that was total news to me: FH.

Turns out, FH stands for Familial Hypercholesterolemia which, in a nutshell, is very high LDL (bad) cholesterol that is caused by genetics. A more complete definition is given on The FH Foundation website:

FHlogo“FH is short for Familial Hypercholesterolemia. It is an inherited disorder that leads to aggressive and premature cardiovascular disease. This includes problems like heart attacks, strokes, and even narrowing of our heart valves. For individuals with FH, although diet and lifestyle are important, they are not the cause of high LDL. In FH patients, genetic mutations make the liver incapable of metabolizing (or removing) excess LDL. The result is very high LDL levels which can lead to premature cardiovascular disease (CVD).”

I was amazed to find there’s a site – indeed, an entire foundation – dedicated to high cholesterol caused by genetics.  And a bit miffed – because I know my high cholesterol is genetic… so I can’t believe I didn’t know about this very useful source of information.

And it’s important – because FH is a serious condition and essentially requires choleterol-lowering medication or other intervention:

“Nearly 100% of people with FH will require cholesterol-lowering medications. For some people with FH, more aggressive measures are needed, including LDL-apheresis (a very simple procedure in which LDL-C cholesterol is removed from the blood on a weekly or biweekly basis.)

The American Academy of Pediatrics recommends that if a family has a pattern of early heart attacks or heart disease defined as before age 55 for men and 65 for women, children in that family should have cholesterol testing after the age of 2 years and before age 10.”

All this very sobering information compelled me to track down the excel spreadsheet I use to track my cholesterol results over time.  I was quite pleased to discover that although my high cholesterol is largely caused by genetics, it does not look like I have FH. In my most recent test, I’d brought my LDL (bad) cholesterol down through diet and exercise to 132 (under 130 was the goal before new guidelines were established).  And according to The FH Foundation website, FH is suspected when untreated LDL is above 190 (or 160 in children).

Whew.  Good news for me on the FH front.

Not so good news for me to ‘discover’ that my last cholesterol test was in March 2013.  Um, more than a year and a half ago.  It seems I have “forgotten” to keep track of my cholesterol levels.  Probably because I spent a lot of time this past year at Shake Shack.

So next week, at my annual ob/gyn appointment, I’ll take the blood test order my doctor always gives me and use it to have my cholesterol tested.

And if you have high LDL cholesterol that has not declined with diet and exercise and/or a family history of early heart disease / heart attacks, consider learning more about FH at The FH Foundation site and discuss with your doctor.

Share

Non-HDL Cholesterol and The New Cholesterol Guidelines

If non-HDL cholesterol was viewed as a key predictor of cardiac disease risk (on par with apoB or LDL particle testing), why was it abandoned in the new November 2013 cholesterol guidelines?

This is something I’ve been thinking about for a while.  Because for those with diabetes or high triglycerides, it was considered vital to know non-HDL cholesterol. (Do You Know Your Non-HDL Cholesterol? explains why, and how easy it is to calculate from just a standard cholesterol lipid blood test.)

Let me start with a brief, very non-technical definition (for more technical info click blog post link above).  Non-HDL cholesterol is a measure that estimates the level of ALL the bad types of cholesterol in the blood.  Think of it this way: subtracting HDL (good) from total cholesterol yield the non-HDL cholesterol number, which is a measure of all the ‘bad’ cholesterol in the blood. That means it’s a measure of all LDL: the ‘regular-old’ LDL (bad) cholesterol number, which is the number that appears on a report, plus all the other carriers of ‘bad’ cholesterol, such as VLDL (very low density lipoprotein) and IDL (intermediate density lipoprotein) – which are not included in the regular-old LDL cholesterol measurement listed on a cholesterol lipid panel report.

Though it was not as widely known/used by doctors as regular-old LDL cholesterol, it’s true that non-HDL-C was  proven to be a better indicator of cardiac disease risk than just LDL cholesterol.

Indeed, as explained in the Mayo Clinic’s Cardiovascular Risk Assessment Beyond LDL Cholesterol: Non-HDL Cholesterol, LDL Particle Number, and Apolipoprotein B, non-HDL-C  is a better measure of cardiac risk than LDL cholesterol:

“Several known limitations make LDL-C a less accurate marker of cardiovascular risk than either non-high-density lipoprotein cholesterol (non-HDL-C), LDL particle number, or apolipoprotein B (apoB).”

“Advocacy for non-HDL-C began following widespread recognition of its superiority over LDL-C as a measurement of vascular event risk and demonstrated equivalency to apoB or LDL particle number in some clinical trials.”

If it was widely accepted in the medical community that non-HDL-C was a better predictor than LDL alone – and indeed, a good proxy for apoB or LDL particle testing, why were BOTH the LDL and the non-HDL-C measures abandoned in the new guidelines?

The answer seems to be that there is no rationale for setting a specific number target for either LDL or non-HDL-C.

I get it for LDL cholesterol. LDL was used as a key measure to determine whether someone should take a statin, even though there was no real rationale for a specific LDL number as a goal (which is crazy but is basically what’s been the case for many years now). Thus, the committee recommended a new risk assessment measure that was based on research – and eliminated the ‘random’ LDL goal.

Makes sense.

And yet.

If it is/was widely accepted and studies have shown that apoB and LDL particle size are predictive of cardiac risk, and non-HDL-C is an easy, cost-effective way to approximately measure apoB and LDL particle size (because non-HDL is calculated from a typical cholesterol test – not a whole new test like apoB) then it seems to me that knowing your Non-HDL-C is a good idea.

But hey, I’m no doctor. (And I don’t even pretend to play one on TV). So I could be wrong.

That said, I’m concerned. The new guidelines say I’m (suddenly, now) very low risk for cardiac disease. But my non-HDL cholesterol is significantly higher than the old “goal” of 130 for those with high triglycerides.

And I get that the 130 figure is not, in and of itself, a meaningful target.

I do.  Truly.

But it seems clear since my non-HDL-C is “high” compared with ‘normal’ or a lot of other people, that this might indicate a potential problem. And thus warrant action.  Not treatment – I get that it doesn’t make sense to recommend a statin based on a goal number that’s not grounded in research.

But to me, it seems that if non-HDL-C is greater than 130 then further testing could be indicated.

Again, I’m no doctor.

But I think it’s important to ASK about this.  Perhaps the fact that my non-HDL is high indicates the need apoB and/or particle size testing – or one or several of the tests the AHA now indicates for those who might be at risk: see New Cholesterol Guidelines – An App For That.

Good thing I’m due for my annual checkup soon.  I will ask my doctor about these tests. AGAIN.

Share

New Cholesterol Guidelines – An App For That

The American Heart Association and the America College of Cardiology released completely new, totally different guidelines for the treatment of high blood cholesterol back in November 2013.

As explained in my post, The NEW Guidelines For Cholesterol-Lowering Statin Meds, in broad strokes the new guidelines state that if you are in one of the following four groups you have elevated heart disease risk and should take statins:

  1. those who already have cardiovascular disease
  2. anyone with LDL (bad) cholesterol of 190 mg/dL or higher
  3. anyone between 40 and 75 years of age who has Type 2 diabetes
  4. people between 40 and 75 who have an estimated 10-year risk of cardiovascular disease of 7.5 percent or higher.

To determine your personal 10-year risk of cardiac disease, the new guidelines included an online calculator * … and now that a few months have passed, there’s even AN APP FOR THAT (links to the app are on the online calculator webpage – or search ‘ASCVD Risk” in iTunes store). I downloaded the app for my iPhone and it’s quite handy as it saves your data and also provides articles about key topics like ‘diet and physical activity recommendations,’ and ‘common cardiovascular terms,’ and the like – right in the app.
* NOTE – if the link does not work, check for an updated link on my RESOURCES page.

One of the more interesting topics I found inside the app (in the Patients’ Blood Cholesterol Management Recommendations tab) discussed additional blood tests. After reviewing with your doctor your ‘lifetime risk estimate’ based on the inputs in the calculator/app, the article stated there were three additional tests your doctor may want to order:  Coronary Artery Calcium (CAC), High-Sensitivity C-Reactive Protein (CRP) and Ankle-Branchial Index (ABI).

The Coronary Artery Calcium test was one my doctor had talked with me about a few years ago. She asked me to find out whether anyone in my family (all of whom take a statin to manage high cholesterol) had had a Coronary Artery Calcium test done, and if so, what the results were. I failed at that. Apparently, I need to email all my cousins and aunts and uncles.  Today.

As I wrote about in Cholesterol Tests Your Doctor Hasn’t Told You About, the C-Reactive Protein test is a test (along with apo-B) that I would really like done to truly understand my cardiac risk. CRP is a measure of inflammation in the body and high levels have been associated with heart disease.  But my doctor declined to order either test for me back a year or two ago – said with my just-over-220 total cholesterol levels, I didn’t need these tests.

The Ankle-Branchial Index I’ve never heard of before. According to the ASCVD Risk app, ABI measures “the ratio of the blood pressure in the ankle compared to blood pressure in the arm, which can predict peripheral artery disease (PAD).”

So I will have to ask my doctor again about Coronary Artery Calcium, CRP, apo-B and ABI testing. I feel sure she won’t agree to this testing because my newly calculated lifetime risk is far below the 7.5% risk that indicates statin medication is needed.

That said, these tests are at least mentioned within the new guidelines, while others, like Non-HDL cholesterol are now no longer viewed as vital to determining cardiac disease risk and treatment plans. So even though my risk is low under the new guidelines and I am no longer in the group that should be taking statins, I want to ask about whether these tests might provide further insight into cardiac risk.

If you haven’t read about the new guidelines or found the new online calculator intimidating, download the new app.* Knowing your cardiac risk before you talk to your doctor will give you more confidence to ask questions about your risk of cardiac disease at your next appointment.

* You can’t use the calculator/app if you already have cardiac disease or take statins. If that’s you, best bet is to talk with your doctor about what the new guidelines mean for you and/or if a change in your statin medication is warranted.

Share

The NEW guidelines for cholesterol-lowering statin meds

It was another big week for cholesterol news.

Last week the FDA declared that partially hydrogenated oils (PHOs), a very common processed food ingredient, are now not safe. As explained in FDA: Trans Fats are not GRAS, if PHOs are indeed declared not GRAS (generally regarded as safe), FDA will have found a way to significantly reduce unhealthy trans fats from the American food supply. Which is huge.

Then this week, more enormous cholesterol news.  On November 12, 2013, the American Heart Association and the America College of Cardiology released new guidelines for the treatment of high blood cholesterol. The new guidelines will very likely result in a dramatic increase in the number of Americans taking statin medications to lower cholesterol and heart disease risk.

Both in the span of just one week

And it wasn’t even National Cholesterol Education Month.  (That was September.)

What gives? Why these two huge announcements now, within days of each other?

While I have no idea if the timing was coordinated (or not), I do know that both moves have the potential to significantly reduce cholesterol and heart disease risk. And that one move (banning PHOs) is a no-brainer while the other (the new statin guidelines) has many up in arms.

As you know, I am not statin-girl (unless clearly warranted) so it’s potentially troubling that the new guidelines will prompt millions of new statin prescriptions. So I empathize with those who are unhappy with the new guidelines. That said, I am all for the RATIONALE behind these new guidelines — which focus on heart disease risk, not on reducing a particular cholesterol number in an otherwise healthy, low-risk individual.

This makes sense to me.

And OK, so I’m not a doctor, so who cares that it makes sense to me? On the other hand, I do think a great deal about medical issues… and to me, these new guidelines are logical. And logical=good, right? In effect, the new guidelines recommend statins only for those AT RISK of heart disease. For those who have high cholesterol but low heart disease risk, statins are NOT recommended.

So, what exactly are the new guidelines? Broadly… if you are in one of the following four groups, you have elevated heart disease risk and should take statins:

  1. those who already have cardiovascular disease
  2. anyone with LDL (bad) cholesterol of 190 mg/dL or higher
  3. anyone between 40 and 75 years of age who has Type 2 diabetes
  4. people between 40 and 75 who have an estimated 10-year risk of cardiovascular disease of 7.5 percent or higher. (And there’s a calculator available online ** so you can figure out if this applies to you. It’s an Excel spreadsheet download – click the red ‘Download CV Risk Calculator’ box and save it to your computer. Do it soon because they may take it down…)** NOTE – the ‘risk calculator’ is occasionally taken down, edited, etc.  If the above link doesn’t work, check my RESOURCES page as I’ll try to keep that one current.

That’s it in a nutshell (well, that and the elimination of the old guideline to get LDL to an ‘as-low-as-possible’ level — in the new guidelines, there is no set LDL goal level).

Is that all? Of course not – there was a ton of media coverage last week, and there’s a lot more in-depth understanding of the guidelines that can be had. As it’s an important (and can be confusing topic), I wanted to provide what I found to be the best primary sources in case you want to dive in and read more.

(If, on the other hand, you prefer to read one piece providing an overview of the new guidelines, how they are different from the old guidelines, and how to calculate your personal heart disease risk, you might find this article I just published on Answers.com more useful: “New Cholesterol Statin Drug Guidelines.”)

But if you want more in-depth information, here are some sources:

Perhaps the new guidelines will result in millions more Americans taking statin drugs – but perhaps, if they are the RIGHT people to take statins, that will be a good thing.  If you are wondering if you should take a statin, read up on the new guidelines, calculate your heart disease risk online, and talk to your doctor.

If you already take statins (or have heart disease already) the online calculator won’t work for you — in that case, talk to your doctor about what the new guidelines mean for you.  Maybe your doctor will recommend going off statins for a bit to see what your baseline cholesterol level is now. Or maybe your doc will want you to stay on statins, but will switch you to a different one.

Either way, the times have changed. Read up on the new guidelines and talk to your doctor about how they apply to your situation.

I know I will.

Share

Learning About Cholesterol

It’s been rather a long while since I wrote about the importance of finding reputable online resources for learning about cholesterol. You can permanently locate links to educational resources on my Resources/Info Links page, but I thought it might be helpful to discuss in a post.

Why?

Well, quite frankly it’s because when discussing high cholesterol and heart disease risk, many doctors – who speak daily, probably, about cholesterol – rush through the conversation and use unfamiliar terms. On the receiving end it can feel like a tornado rather than a give and take discussion of personal cholesterol results and the resulting medical goals.

Plus, you’re going to google cholesterol anyway, you know you are.

Which is good, actually, because the more you know about cholesterol and heart disease risk – and treatment alternatives — the more committed you are likely to be to your cholesterol management program. Well, maybe. (My commitment waxes and wanes.) At the very least, researching online will enable you to create a list of questions to ask your doctor at a follow up appointment.

And researching should help you question whether prescription medication is absolutely necessary for your personal cholesterol management plan. Which is a vital step many seem to skip.

Truth be told, cholesterol-lowering statin medication is absolutely justified for many, many people – and these meds have undoubtedly saved many lives. But if high cholesterol is your only risk factor, you should question the validity of statin meds for you individual case. Have a discussion about the pros and cons with your doctor. And to do that well, you need knowledge.

But you don’t want to search just anywhere on the web. Some sites – such as WedMD — are largely funded by big pharmaceutical companies so you’ll want to know their slant. To help ensure you are gleaning information from reputable, unbiased sites, here are a few to check out.

An excellent source is the National Cholesterol Education Program (NCEP) which I recently wrote about in my post, September is National Cholesterol Education Month. This site has a great deal of useful information, though it’s layout makes it difficult to navigate. See my post for specific links to the useful sections of this site – including an online calculator for heart disease risk.

For an excellent overview about cholesterol, a visit to the American Heart Association – Cholesterol Overview site is a great place to start. This site explains that cholesterol itself is not ‘bad’ and that it is created both by our bodies and from the foods we eat. Scrolling through this article you’ll find an explanation of ‘good’ and ‘bad’ cholesterol, and there’s even an animation if you really want to get a visual of what cholesterol is and how it works in your body.

The Mayo Clinic is one of my favorite sites for unbiased, well-explained information about cholesterol and heart disease risk. (Go ahead. Color me geeky.) It is vital to truly understand your personal heart disease risk; the Mayo Clinic’s High Cholesterol Risk Factors page explains that there are seven conditions which, when combined with high cholesterol, elevate heart disease risk.

Test results are a big factor in risk assessment, and it’s pretty likely that your doctor zoomed through your personal lipid panel test results and what they mean. To learn more about why the goal for ‘total cholesterol’ is at or under 200 mg/dL, what triglycerides are, and what those HDL and LDL numbers really mean, visit the Mayo Clinic’s incredibly useful High Cholesterol Tests and Diagnosis page. This page is an excellent reference that explains the targets for each key cholesterol measure – and relates them to heart disease risk level. In my humble opinion, this page is one of the most useful online resources available.

Finally, if you want to avoid statin medication by lowering cholesterol through diet and lifestyle, you’ll want a good nutritional resource. For that, the Cleveland Clinic’s Nutrition-Cholesterol Guidelines is a terrific resource that explains what’s good and bad about things like the different kinds of fats, dietary cholesterol, protein, carbohydrates, and plant sterols. Even better, it gives a daily target for each. Best of all (major geek alert), there’s a handy chart that summarizes the key info all in one place. Make sure you scroll to the bottom of the page to see this useful chart.

And OK, I lied a minute ago. In my humble opinion, the Cleveland Clinic’s nutrition-cholesterol guidelines page is one of the most useful online resources available.

Let’s make it a tie. I vote that the Mayo Clinic’s High Cholesterol Tests and Diagnosis page wins for explaining test results and targets, and the Cleveland Clinic’s Nutrition-Cholesterol Guidelines page wins for showing how to combat high cholesterol, nutrition-wise.

Beyond these there are, of course, many other great online sources for information about cholesterol and heart disease risk. And your doctor is potentially the best resource of all. That said, the more you know, the better questions you can ask your doctor — and that will go a long way to ensure the program you and your doctor devise is the best possible course for you.

Share