Familial Hypercholesterolemia


(Dianne) #1

Until two years ago I had been on statins for a couple of decades. After reading books(by J.Moore and Dr. Bowden, Dr. Sinatra, Dr. Malcomb Kendricks),watching hundreds and hundreds you tube lectures(Ivor Cummins, Lustig, Dr. Gerber,etc. and listening to hundreds of hours of podcast about the great hoax of statin and the myths of cholesterol I stopped taking them. My last three blood panels have my total Cholesterol over 500 and my LDL over 450. My cardiologist wants me back on the statins. I wonder if there is any research on FH and findings why someone wouldn’t take statins with such high levels. I really don’t want to go back on statins, but I can’t find any of those listed above speaking to the FH condition.

(Bunny) #2

Note: The last paragraph really interests me and stuns me at the same time!

Correlations between Cholesterol, Vitamin E, and Vitamin K1 in Serum: Paradoxical Relationships to Established Epidemiological Risk Factors for Cardiovascular Disease

Correlations of cholesterol and vitamin E (A), cholesterol and vitamin K1 (B), and vitamin E and vitamin K1 © concentrations in sera of an initially severe hypercholesterolemic male patient, according to the dietary guidelines of the National Heart Foundation of Australia.

It has been reported previously that concentrations of vitamin E in serum vary depending on the amount of lipid (16) and apoproteins (Cham et al., submitted for publication). We now present further evidence that there are significant correlations between wide concentration ranges of cholesterol, vitamin E, and vitamin K1 in serum, which pose some interesting questions. Concentrations of these components were measured in serum from neonates and fasting normolipidemic and hyperlipidemic adults.

It would appear from the above data that the variability of the absolute serum vitamin E and Vitamin K1 concentrations may depend on that of the concurrent serum cholesterol concentrations. Accordingly, the assessment of vitamin E and vitamin K1 status should always take into account the lipid concentrations, as has been proposed previously for vitamin E (16)(17)(18)(19)(20). Therefore, statements about the effect on cardiovascular disease of these two vitamins should be done with lipid adjusted values. The current observations highlight some very interesting propositions. On the one hand, because of the observed correlations of vitamins E and K1 with serum cholesterol and because serum cholesterol is related to the incidence of atherosclerosis, from an epidemiologist point of view, both vitamins E and K1 could be regarded as being atherogenic. On the other hand, because of the known biological properties of vitamins E and K as described above, from the point of view of a biochemist, these vitamins may be regarded as being antiatherogenic. From a clinical point of view, these data are confusing because, by reducing serum cholesterol to obtain a more desirable concentration of cholesterol, a concomitant reduction occurs in vitamins E and K, two components that are considered antiatherogenic.

What are the clinical implications of these observations? …More

CYP4F2 Is a Vitamin K1 Oxidase: An Explanation for Altered Warfarin Dose in Carriers of the V433M Variant
The CYP4F2 gene on chromosome 19 encodes for the CYP4F2 protein, which has been shown to catalyze hydroxylation of vitamin K1 (VK1) into its hydroxylated form as a “siphoning” pathway for excess VK1

(Bill Graves) #3

Have you come across Ron Culbertson through Ivor’s links?

He has FH & talks about his experiences (heart attacks, stents, & statin use).

He had YouTube videos, but I can’t seem to find them now…

(rodney) #4

my first post here. I have FH. I started keto 1/16/17. 51 yo, 180 5’9".
I didn’t take my statins as prescribed and also didn’t prescribe to any particular diet just a normal SAD but somewhat active and reasonably fit. my highest total cholesterol was 444 and ran in upper 300’s. started having the 800 lb gorilla sitting on my chest pains during exertion and ended up have triple bypass 6/17 at age 50.
95, 90 and 65 blockages. I was on my well on my way to a major event. I can say CABG surgery f’ing sucked and at my age all I heard was “you’re in here for what?” I’m still on statins and until I can figure out a way to control my cholesterol, I will be simply outta of fear of never wanting to go thru anything remotely close to open heart surgery again. I’m just beginning to try and figure out the why of my issues. my blood sugar has always been perfectly normal. i just skimmed through the above post but I have a lot to investigate as I’ve learned more about cholesterol and the impacts it has on our bodies. not much to add to this post but my hopefully my experience was worth something…

(#inforthelonghaul, KCKO, KCFO) #5

According to Ivor and Jeff’s book, Eat Rich, LIfe Long, the only true way to know if there is an issue is to get the calcium cat scan. You should tell you dr. you want that done, if your score is low, just say no. If it is high, try them, if you don’t suffer all the nasty side effects, take for a couple of years and get rescanned to see if there is little or no progress. In their book Appendix C is devoted to all high cholesterol concerns, including Familial Hypercholesterolemiacs. You might want to read their book before your next dr. visit.

All the best on getting yourself sorted out.

(So much bacon . . . so little time . . .) #6

According to Dr. Phinney in one of his lectures, about half the people with familial hypercholesterolemia live perfectly normal lives, have no heart trouble, and live to ripe old ages, so he’s not convinced that it’s the cholesterol level in and of itself that is the problem. Cholesterol is necessary to the construction of cell walls, and is the raw material for a number of really important hormones, so the presence of it in arterial plaque is probably not the cause of the problem, but rather part of the body’s attempts to heal arterial inflammation. (Just as the presence of fire trucks at a fire doesn’t mean that they caused the fire.) It appears that the calcium score is a much more reliable indicator of cardiovascular disease than high cholesterol levels.

(Karen Parrott) #7

Hello All. I wanted to post this link to some info over at Quest Diagnostics (full disclosure, Quest is my employer) but I thought some of the info might be useful.

I use only the lab that is covered by my insurance, so I’m pretty sure that other labs run these tests. Hope this helps those who want to learn more.

(Diane) #8

There is a lot of great information here. I would add the following: I worked in a cardiovascular genetics research clinic for 15 years where we worked extensively with families and patients with FH. While managing your cholesterol is part of the issue that speaks to your risk of heart disease, it also makes certain types of behavior modification even more important. For example, stopping smoking and (if you’re also diabetic) managing your blood glucose levels becomes a great deal more important in the presence of FH. Either of these additional risk factors multiplies your risk of developing CVD many times compared to a person with those risk factors without FH. So, depending on your situation, you could possibly focus on other ways to mitigate your risk for developing CVD whether or not you determine its a good idea for you to take statins.

(Margaret G) #9

I’m one of the FH (going by LDL levels, not genetics) who does not have heart disease. I’m 60 and my TC is 380. My parents were both treated with statins, Dad died with Alzheimer’s and Mom got diabetes. I tried atorvastin for a few months and it worked, but I’m not convinced cutting off a metabolic tree is a good idea.
After I stopped the statin, I entered care of a cardiologist. Tests of EKG, echocardiogram, and nuclear stress test for cardiac perfusion were all normal. She still showed me the clogged artery model and counselled me to take statins.
Five months later, my triglycerides are 105, HDL is 60, and LDL is 300. If my doctor shows me that I have atherosclerosis, I will take prophylactic statins.

(So much bacon . . . so little time . . .) #10

I doubt you’ll have trouble, since your trig/HDL ratio is so good.

Have you checked out Dave Feldman’s site, www.cholesterolcode.com? And Ivor Cummins at www.fatemperor.com has also studied cholesterol in depth. I have watched several of their presentations at various Low Carb events (available on the Low Carb Down Under YouTube channel) and their grasp of the science seems solid.

(Angie Cummings) #11

Does anyone know of any research that has been done on children with FH and changing their diet to Keto or lower carb to treat it? Both my husband and 14 yo daughter have FH and my daughter is getting to the age that they will probably suggest putting her on statins. If possible, I would like to avoid that but it seems like it is still recommended for those with FH to be on statins but I haven’t seen anything specific to children or females for that matter. Any additional specific information about FH in children would also be greatly appreciated. TIA

(So much bacon . . . so little time . . .) #12

How susceptible is FH to the kind of manipluation Dave Feldman’s hyper-responders can do with their trig and LDL levels? If your daughter is willing to eat a ketogenic diet, I’d put her on it regardless of the FH, always making sure that, as a growing girl, she gets enough protein to fuel her growth spurt. Even if her cholesterol levels remain high, they ought to improve at least somewhat. And a ketogenic diet ought to eliminate or greatly reduce the cardiovascular risk factors that cause 50% of people with FH to have heart attacks and CVD at an early age. (We can also hope she’s in the 50% who never develop heart trouble.)

Personally, I have come to the conclusion that the science behind our cholesterol worries is so faulty that I’m not going to worry anymore, but it’s not my daughter, and I don’t have to deal with your doctor.

Perhaps @richard or @DaveKeto might be willing to add something a bit more substantive?

(Angie Cummings) #13

Thanks for the response. Part of the problem is she is a 14 yo girl who is very resistant to changing her diet away from sugar and carbs. Her dad and I are slowly working towards changing that by following the woe ourselves and removing the carbs and sugar from our home but she is getting the age where I can’t control her diet when she is not at home. I’m trying to find as much science as possible to help convince her that this woe will have innumerable long term benefits for her vs her needing to be on drugs. I would also like to have the science to be able to have a meaningful conversation with her endocrinologist about it.

For more background: her grandfather also had FH and had his first of several heart attack at age 42. At this time my husband was 13 and was put on statins since he was tested and had high levels of cholesterol and he has been on them ever since. My husband is not as concerned about the statins–probably because he has been on them for so long and to his knowledge he hasn’t had any adverse affects from them.

(Dave) #14

First — I should emphasize I haven’t been as active here due to how stretched I’m getting in the other primary channels of communication (CholesterolCode.com, Twitter @DaveKeto, and Facebook). So if you need to reach me, try commenting at CholesterolCode.com.

FH is often diagnosed on cholesterol numbers alone, and it shouldn’t be. It’s actually a genetic disease that results in higher total and LDL cholesterol, with the most prominent version being the mutation of the LDL receptor. I’ve long suspected children who are on a low carb diet will get misdiagnosed as having FH when they actually don’t — they’re just powered more by fat (see my work at the blog).

It’s hard to comment on any numbers without knowing the full lipid profile: Total, LDL cholesterol, HDL cholesterol, and triglycerides. But I’ll tell you I focus mainly on HDL and trigs as they tell a more complete story of the real status of the fat-based metabolism and likely why the LDL may be higher. For more on this, see my short video here: https://www.youtube.com/watch?v=uVcYzc5O_mg and my Simple Guide series here: http://cholesterolcode.com/a-simple-guide-to-cholesterol-on-low-carb/

(So much bacon . . . so little time . . .) #15

That’s perfectly understandable. Thanks for taking the time to stop by. And thanks for taking the time to dig so deeply into all these matters for us. You are a gentleman and, literally, a scholar! :bacon:

(So much bacon . . . so little time . . .) #16

Just listened to an interview with Siobhan Huggins, and her take on FH is that the ones at risk show signs of insulin resistance. An HbA1C blood test ought to be indicative. I doubt anyone will authorize an insulin assay, but you could always ask.

(Richard Morris) #17

I don’t know enough about familial hypercholesterolemia to share an educated opinion. I recall Dr Ken Sikaris indicating that Statins may be useful to treat people with FH, but not for the broad range of cases they are currently prescribed for.

(Angie Cummings) #18

@richard @DaveKeto @PaulL

Thank you to all of you for taking the time to respond. I’ll take a look at the videos and other links you provided and see if they can provide some additional resources.

If anyone else runs across some info specific to Keto and Familial Hypercholesteromlemia in adolescents or anyone really, I would greatly appreciate it. For now we will work on getting my husband’s numbers down so he can get off his statin and try to gently nudge our daughter towards lower carb so she doesn’t get put on one. KCKO

(Jonathan Brady) #19

I’m new here but I’d like to start by saying THANK YOU for being a resource. Based on the video you made and shared here, I’m guessing I shouldn’t be too worried…?
Total: 342
LDL: 230
HDL: 88
Trig: 109

I’m a 39 year old male, I’ve never smoked or drank alcohol (nor done recreational drugs), I workout daily in some form or fashion as well and am active with my 2 young kids quite a bit (I’m the human jungle gym). My maternal uncle had a stroke in his late 40’s, but that’s it other than FH. He ate TONS of starches and practically emptied the salt shaker on all of his food (just like his parents).

(So much bacon . . . so little time . . .) #20

Your trig/HDL ratio is nearly 1.0, and anything under 2.0 is considered excellent. You are doing fine, my friend.