Familial Hypercholesterolemia

[Kath]

Hello, For those with FH I would love to hear your stories.
What diet works best for you personally?
Are you on statins?
How do you feel about a higher fat diet?
Thanks so much!
Kath

[hill dweller]

Plow through this very deep read: http://cholesterolcode.com/about/
And see how Dave reverses his cholesterol numbers in just a few days: http://cholesterolcode.com/extreme-chol ... xperiment/

So which is the better CVD metric to watch, IR or serum cholesterol? If serum cholesterol can be manipulated so easily, maybe HbA1c is more indicative of CVD health.

[Kath]

Thank you Hill!

[Julie G]

Kath, true (genetic mutation) familial hypercholesterolemia is rare needs to be managed closely by a lipidologist. As you're well aware, it can put you at risk for CAD. if you've not had the genetic test and just have high cholesterol, welcome to the club. ApoE4 carriers tend to hyperabsorb dietary cholesterol and many here struggle with hypercholesterolemia. I'm wondering about your current approach to addressing this. Are you using a statin now? Based upon your vegan DHA question, I'm guessing that you may be using a low fat vegan approach? I look forward to hearing more of your story.

[Stavia]

So which is the better CVD metric to watch, IR or serum cholesterol? If serum cholesterol can be manipulated so easily, maybe HbA1c is more indicative of CVD health.

exactly.
Of course its the gylcaemic control. Glycaemic control trumps lipids every single time.

LDL IMO certainly is one of the factors, but it's only a small part of the picture.

I, and most mainstream doctors, believe heart disease is multifactorial and have done so for years.
However most doctors don't practice medicine in this way.
I believe the paradigm of science testing one variable at a time (which is appropriate) plus social forces (media oversimplifying, plus people wanting a simple solution, plus doctors under overload, plus the whole Ancel Keyes & subsidy of the corn industry), plus financial forces (food industry), etc has lead to a dangerous reductionism in both doctors and laypeople. Whereby the complexity of heart disease has been reduced to eat less fat and take a statin.
Sigh.
Rant over.

Its the glycaemic control. The raised glucose. The raised insulin. The Hba1c. The fatty liver. The insulin resistance. The consequent inflammation.

[Kath]

Thank you all for the replies.
Julie, Thank you for understanding. Not a lot of people out there get FH and I am only learning about it myself these last few months.
Stavia, I do believe that we, as a society, and our medical Dr.s don't always look at the big picture. But I also believe that a persons health history gets lost in the shuffle many times, and that history and their "habits" if not addressed can leave a Dr "guessing" in a way with his/her hands tied. In this way they are unable to make an educated decision on how to help and then our needs are not solved.

I have a long and complicated medical history and its been a journey. I've had to become an advocate for my own health so I can educate my Drs on all that is "Kath". I have created databases of my habits, lifestyle, medical records, past illnesses, family histories, etc so they can see and understand the issues and get a clear view of the problems. But not being a Dr myself, I need some help managing it all sometimes. Its a lot to take in.

Julie with regards to FH, I had no idea it existed till a few months ago. I knew there was a genetic link, but had no idea there was a name, a foundation and resources and Dr.s who understood it. I believed with all that I am, that even despite my family history, this was caused by food and bad habits. Even though I ate better than everyone I knew, I was the girl with the awful numbers.
I've been battling since I was a kid trying to get my cholesterol down. I've been on every diet, food plan etc and even when.. sharing my soul here now... I battled Anorexia and bulimia, my numbers refused to drop.

I have a database from 2012 that compares food, exercise, stress and all the lab scores and I couldn't get these numbers down to save my life. So this last year I did a test, and I was CERTAIN I would pass it. I started following Dr. Conrad Esselstyns Whole foods, plant based, no oil, low fat, low sugar diet for cardiac health. I exercised 30-45 minutes everyday and documented everything.
I event started a little veggie group on Facebook.
Physically I felt great but I was hungry! I wanted more "healthy fats", nuts, avocados, tofu etc but I stayed compliant to make sure the results were accurate.

In one year I lost 30 lbs! But my LDL Dropped a pathetic 18 pts.
I was gutted, defeated and bound to run out and eat a hot fudge sundae.
But I stayed the course and I called Dr. Esselstyn. He listened to my health history and said he stands by his claim that what you put in your mouth can heal your heart, BUT we cant change our genetics and some people need more help. He told me to find a good cardiologist in my city. I found an amazing Dr at a big teaching hospital near me and he specialized in FH as well.

Tests were done, I was diagnosed with FH, and sadly Cardio Vascular Disease. At my young age of 51, I have 90% more plaque than women my age. On one hand I was so upset, but on the other hand I had answers, albeit answers I didn't want.

He put me on a statin, I finally complied and in 6 weeks I dropped 100 pts of my LDL. Great news, but more to go and now the personal frustration of needing these drugs to keep it down. So I am still on a Whole Foods, Plant based, no oil, low sugar diet, BUT I have added in nuts/nut butters and avocados the last week. My body really needs a higher fat content for other health issues but I am concerned that will push my LDL up and make the statin work harder.

My memory has been a big issue for many years but my family and I saw a loss in memory retention this year.
I had some tests run, saw a neurologist and apparently I fall within the MCI boundaries.
I found Dr. Bredesens book by accident and loved it.

Now I am making more changes to my diet and lifestyle by learning the ketoflex plan but I don't eat high fats. Its daunting trying to find my way in this maze of a crazy health history. It would be my goal to go off the statins eventually and if that wont work, then a very minimal amount.

Right now, its one day at a time, tweeking things and hoping for the best result.
Thanks for the support!

[Stavia]

Kath, my husband who is lean and fit has a coronary calcium score in the high 80th centile. He is on a statin, I feel very comfortable with this and do not plan to stop it on our current evidence. But I am on his case about his glycaemic control all the time. I still believe LDL is a problem in the presence of high glucose and insulin. Esseltyn's diet is an option for your heart if you can sustain it and maintain excellent glycaemic markers but then again there is the cognitive issue. Is it possible for you to get into ketosis with a very low fat vegan approach by using intermittent fasting, exercise and lots of resistant starch?
Its very tricky......

[Kath]

Stavia,
As I read your message I sit here having just taken my first test with my ketone meter and getting a 0.2 reading. Lower than Dr. Bredesen wants.
I fast every day 14-16 hours. I've got that down pat.
I exercise every day 40-45 minutes treadmill. I don't go super fast but I sweat and burn 200 or more calories.
My fat content is not super high, as I am only eating nuts and avocados now, but I also lowered my carbs, so i'm eating no breads, 2 rice cakes a day, the rest veggies and tofu, and I lowered my sugars to no more than 2-3 servings a day so thats got to account for something.
My fasting glucose was 76 this morning.
I still have about 15-20 lbs to lose.
The only thing I can think of, and this is a big issue, is that I have been in menopause for 25 years due to surgery, and I am a 15 yr cancer survivor. I've been in adrenal fatigue for years and the cardiologist said my treatment has to be that of a man with no female hormones.
Yes the cognitive stuff is so important.
I did find a Dr about an hour away who is trained by Dr. Bredesen. Maybe she can make sense out of this.

[Julie G]

{{{Kath,}}} I'm sending virtual hugs. Thanks for sharing your background. You are up against a lot. It sounds like you're currently low fat and low carb... very difficult. I bet you're hungry a lot . No wonder that you're struggling to get into ketosis. Am I understanding that you're also vegan? So many limits on what you can eat! Is the veganism for moral or health reasons? If strictly health, I'd encourage you to consider adding some wild-caught, low mercury, fish or shellfish and some occasional pastured eggs. If you have concerns about cognition, we have ample proof that animal products (or specific supplementation of multiple nutrients) is necessary to maintain optimal brain health. DHA and choline are especially vital as are B-12 and D3. Dr. Georgia Ede has several wonderful blog posts on this topic.

A few thoughts... Is your statin lipophilic or hydrophilic? Some hypothesize that the latter may be safer with regards to cognitive health. The concern is that the lipophilic type may actually cross the BBB and reduce the cholesterol pool in the brain. Do you have any idea what your fiber intake is? I would encourage you to consider going as high as you can comfortably manage with non-starchy vegetables. (I get around 50 g a day.) Dietary fiber absorbs cholesterol in the gut and can significantly reduce LDL and creates short chain fatty acids that help to generate beta-hydroxybutyrate, a type of ketone body. Along those same lines, you may want to consider adding a fiber supplement. My FMP has recommended SunFiber for me as it's a prebiotic that also feeds good gut bacteria. A side effect is that it lowers cholesterol, but still allows me to achieve ketosis. How about your thyroid function? What is your TSH? You want it low. Those affected with FH have a problem clearing LDL. An optimally performing thyroid aids in the clearance of cholesterol. My guess is that as you continue to fast, exercise, lose weight, and layer in some of these strategies, you may be able to add some healthy fats (olives, avocados, nuts, seeds, EVOO) and begin to achieve a decent level of ketosis, while keeping LDL stable. All of these strategies will also lower your glycemic markers which, as Stavia has already indicated, is your most effective strategy yet.

Depending upon the state of your cognition, you MAY still be a candidate for bHRT despite your cancer history, but you need a good knowledgeable doc to help you sort that out. You have lots of moving parts and a complicated health history. I'm so grateful that you have a Bredesen trained physician near you that can help you prioritize. Focus on what you've achieved so far. Kudos on all of your accomplishments. Baby steps moving forward. You needn't incorporate every strategy at once.