Newbie intro - with question

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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ketoist
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Newbie intro - with question

Post by ketoist »

Greetings ApoE4 Community!

Recently, I learned about my ApoE3/4 status, after a lifetime of elevated LDLc and TC. I am thrilled to have found this community of extremely knowledgeable, educated people! I am a 54 year old oncology pharmacist on a mission to bio-hack herself in order to find the most optimal and sustainable way to live with genes designed to set you up for a challenge. I have a firm understanding of nutrition, and healthcare topics, but I passed on the Koolaid, and prefer to keep thinking outside the box to get on top of my own issues. Thank you for accepting me to this Forum!

After menopause, my lipids really took off (TC 300ish, LDLc 200ish, HDL 65-85, TC 80s-90s). I got the lipid NMR in May for the first time, and it shows high LDLp (2700ish), and sLDL (near 700), with a lipid IR score of < 25, though. Fasting insulin 4-6, and FBG 80s, A1c 5.1. All these numbers while on keto (including saturated fats), eating OMAD on most days. I have been doing this since April this year. I have a diagnosis of Hashimoto's, with a normal functional status of my thyroid, although my T3 could use a little tweaking. Also, I have recovered from severe HPA axis dysfunction (aka adrenal fatigue), which left me bedridden in 2016 after I embarked on a low-fat (go figure), high fiber, and moderate carb (no sugar, processed carbs or the like, just veggies, oats, and legumes) diet with ~1800 kcal/day. After six weeks, my TC dropped from 305 to 200, LDLc from 199 to 125, HDL from 85 to 57, and TG from 134 to 83. Lp(a) was 8. At first I thought they mixed up the labs, as this response to just diet alone was more powerful than the most potent statin on the market. But I turned into a dysfunctional blob, and was on FMLA to recover from this unexplained weakness and muscle pain. I relaxed my diet, which seemed to have helped, and a couple of months later, I made friends with the AIP diet. I wasn't too thrilled about all this meat, and coconut stuff, but it helped some of my symptoms. This was two years ago. After I could not take this kind of eating any longer, I returned to a more balanced, normal diet, but still not anywhere near the SAD. But I started gaining weight - A LOT, even on AIP! And with it, I felt so much better. I need to add that I am obese, and have been for a long time. The weight kept creeping up, and in those last two years, I packed on 44 lbs. No insulin resistance, not even close. I wanted to start IF so badly, but my FM doctor recommended against it for me due to my weak adrenals. In April this year then, when I realized that I can tolerate the feeling of hunger, without feeling shaky, jittery or twitchy, I decided to give IF a try, and worked up to 24 hrs, then eat. I felt great!! I was eating keto-ish when I did eat, and felt energized, had better exercise tolerance, better mood, and a razor-sharp brain. My lipids, as above, still no change for the better. So about two weeks ago, I decided to limit saturated fats, and add more fiber. And now I feel almost as terrible as when I crashed in 2016: weak, elevated HR, low stamina, muscle pain when exercising, or even taking the stairs.

I am concerned that I do not meet my kaloric needs with one meal a day, restricting saturated fats. What is there left to eat? Leafy greens, cruciferous veggies, small amounts of shellfish (curious as to how people do that), a small amount of berries, nuts, seeds. Currently, I use Icelandic lowfat yogurt as a filler to hold me over. I feel like there is not really much variety in foods anymore. Most recipes in vegetarian/vegan keto contain coconut, butter, ghee, etc...I really do not want to abandon my ketosis, but I wonder if there is someone like me out there who successfully turned around their lives while adjusting their lipid profile in the process. I would need approximately one more year to lose to weight to be under a BMI of 25. Not deviating from that. Will weight reduction really help someone's LDLp and size when you're E4? Am I doomed to live a low-fat lifestyle???? Does IF truly elevate LDLp? I know David Feldman thinks so. Right now, I feel like my options are to either expect a heart attack, or have a low QOL in response to a low-fat diet. Sorry, this is my intro post, and it is supposed to be chipper! But the thought of a statin is not very appealing! :shock:
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Re: Newbie intro - with question

Post by NF52 »

ketoist wrote:Greetings ApoE4 Community!

Recently, I learned about my ApoE3/4 status, after a lifetime of elevated LDLc and TC. I am thrilled to have found this community of extremely knowledgeable, educated people! I am a 54 year old oncology pharmacist on a mission to bio-hack herself in order to find the most optimal and sustainable way to live with genes designed to set you up for a challenge....
I decided to give IF a try, and worked up to 24 hrs, then eat. I felt great!! I was eating keto-ish when I did eat, and felt energized, had better exercise tolerance, better mood, and a razor-sharp brain. My lipids, as above, still no change for the better. So about two weeks ago, I decided to limit saturated fats, and add more fiber. And now I feel almost as terrible as when I crashed in 2016: weak, elevated HR, low stamina, muscle pain when exercising, or even taking the stairs.

I am concerned that I do not meet my kaloric needs with one meal a day, restricting saturated fats. What is there left to eat? Leafy greens, cruciferous veggies, small amounts of shellfish (curious as to how people do that), a small amount of berries, nuts, seeds. Currently, I use Icelandic lowfat yogurt as a filler to hold me over. I feel like there is not really much variety in foods anymore. ...
Am I doomed to live a low-fat lifestyle???? ... Right now, I feel like my options are to either expect a heart attack, or have a low QOL in response to a low-fat diet. Sorry, this is my intro post, and it is supposed to be chipper! But the thought of a statin is not very appealing! :shock:
Welcome ketoist!
I feel like I should call you Dr. Ketoist, since as an oncology pharmacist you have extraordinary protective factors going for you (high level of education, cognitive challenges in your profession, social engagement and purposeful life. So I hope I can encourage you to take a step back from your NMR profile (I had one 2 years ago that was equally high and scary, and an Lp(a)score that should have given me a heart attack just to read) to focus on what you have in your cognitive and cardiac bank account. Your Aic score is great, you are not diabetic, you found a diet that gave you energy, a better mood and a razor-sharp brain.

As someone who also met the criteria for obese for many years, while having normal blood levels, and no other disease indicators, I know how hard those fat cells work to keep themselves happy, even if it means you are miserable. I also believe that while it is important to try to eat healthy foods, and to look for causes of weight gain, society as a whole, and often people who have never struggled with their weight, minimize the differences between life-long stable weight and post-menopausal weight loss. (Like trying to explain what it's like to have tinnitus, or chemo fatigue to someone who has had neither.)

Many members on this forum know the intricacies of ketosis and keto diets far better than I, but I am struck (in the section I quoted in bold above) by how it seems like you went from high saturated fat to low fat, without stopping at high MUFA/PUFA fats like EVOO, avocados, almond butter, a wider variety of nuts etc. Here's our wiki resource on fats: Fats, Omega -3(ω-3) & -6(ω-6), DHA and More

I too have been obese in midlife, and while retirement helped me lose a fair amount of weight (or 30 years of it, which I sometimes say to give a sense of how "time to lose weight " can be measured differently) I am still overweight, although all my non-cholesterol numbers are well within recommended ranges. Yet the only thing that brought my LDP-P level halfway down from the 2200 range has been 10 mg of atorvastatin daily for the last 2 years. I haven't had any of the muscle issues reported with statins. Since my father died of cardiac arrest at my age (67) and I had Lp(a) scores that would indicate a high risk of aortic stenosis and/or coronary artery disease, I got a referral for a coronary artery scan from my PCP a year ago (insurance rarely covers that). For $150, I got great piece of mind--a zero plaque score and a coronary "age score" of 39! I have a friend with a strong family history of AD and heart disease who took my suggestion to get her CAC and found she was above expected levels, which helped her frame some dietary choices. Either way, I think some biomarkers (LDL-P, Lp(a) don't tell the whole story, and imaging tests and functional measures are immensely helpful then.

As both Stavia, the physician author of our Primer and my doctor have said "Doctors pay attention to the patient and the context, not simply the numbers." I imagine as an oncology pharmacist, you see examples daily of people who need higher or lower doses of medication than the formulas would suggest, or who respond to one intervention well and another similar one poorly. Please give yourself permission to experiment with doing IF on a less restrictive basis, and with introducing healthy fats (Kitu Coffee with MCT has become a friend of mine in small doses). And remember; you are so much more than that one ApoE 4 allele! That gene is not your destiny, nor is a heart attack.
Last edited by NF52 on Sun Jun 23, 2019 3:25 pm, edited 1 time in total.
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Re: Newbie intro - with question

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Thank you, NF52, for your thoughtful response! So much wisdom!

Just to clarify, the low-fat (no saturated fats) diet was back in 2016, when I was still in greater alignment with the recommendations of conventional healthcare. Just recently, I restricted, not eliminated saturated fats in favor of MUFA and PUFA, in addition to flaxseed, oatbran fiber, and pectin, but it's just not the same kind of way of eating. Cheese has been a staple in my diet, and it goes so well with veggies. : ) I tuned in to Dr. Gundry a little this afternoon, and while I found some of his recommendations and findings very insightful, I am not sure that I would able to sustain myself long-term on his food pyramid. I think that all these smart folks who are out there creating their following, are on to something, and have valid points, but admittedly, as it always has been, the truth may lie somewhere in the middle, or the picture is just not complete yet. Furthermore, nutrition is no longer a one-size fits all.

It has been reassuring to read your story, knowing that one is not automatically doomed, and risk does not equal event. You are right, the absence of IR is working greatly in my favor, and I need to remain cognizant of that. The CAS is in the works for me. A statin, as much as I loathe them, might be a bridge to hold me over until the weight is off.

As for patients, it is always easier to objectively manage someone else's drug regimen/well-being, than your own. But your level of compassion for the patient definitely increases significantly in response.
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Re: Newbie intro - with question

Post by SamNZ »

ketoist wrote:Greetings ApoE4 Community!

Recently, I learned about my ApoE3/4 status, after a lifetime of elevated LDLc and TC. I am thrilled to have found this community of extremely knowledgeable, educated people! I am a 54 year old oncology pharmacist on a mission to bio-hack herself in order to find the most optimal and sustainable way to live with genes designed to set you up for a challenge. I have a firm understanding of nutrition, and healthcare topics, but I passed on the Koolaid, and prefer to keep thinking outside the box to get on top of my own issues. Thank you for accepting me to this Forum ....Right now, I feel like my options are to either expect a heart attack, or have a low QOL in response to a low-fat diet. Sorry, this is my intro post, and it is supposed to be chipper! But the thought of a statin is not very appealing! :shock:
Hi Ketoist,
Thanks so much for joining our community, I am not sure I have anything to offer on you nutrition wise, as you have a personal handle on so many different diets and obviously show amazing perserverence. As a FM coach am really big on self awareness which you have obviously become a master at. In my opinion, listening and understanding your body is the number one thing, understanding how you feel is crucial. Obviously the bloods and weight are an issue for you but I wonder if there are possibly other things at play (lifestyle factors) there other than the diet that could be keeping the weight on. I know personally having really cleaned up my own diet over the last 2 years to a not perfect LCHF ish diet I expected weight to shift - but it hasn't. However lots of other really cool things have, I am happier than I have ever been and have Vitiligo re-pigmentation. If you are still seeing your FM practitioner, maybe seeing if there are any other pieces in the puzzle that are being missed for you. You are amazing though at how well you are understanding how things are working for you, with your knowledge and understanding I think going with your gut and trialing different things for 3-4 week stints to see if you are getting any positive effects is still a good way for you to go, quietly working through any movement/ sleep/ stress/ toxin/ trauma challenges that may also need to be addressed. I was listening to a podcast for Mark Hyman with The Science of Preventing (and Reversing) Dementia - with Marwan Sabbagh. I have also heard this one in the past on statins and cholesterol that may be of interest to you to put some perspective on the importance of high cholesterol in your mind Why cholesterol may not be the cause of heart disease. Happy listening, I hope they may help to give you some clarity on a way forward. Welcome again to our community, I am sure with all your experiences you will be able to contribute well and hope you find some answers to help you on your own journey. SamNZ
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Re: Newbie intro - with question

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Thank you for providing me with additional food for thought, literally. :) There isn't a day going by where I don't learn anything new, or find another piece to the puzzle of me.
Just yesterday, it struck me that all the foods I genuinely disliked as a child (and was made to eat anyway, we've all been there) turn out to be exactly those foods I now think are not good for me. Learning to listen to your body/gut is so important, but trusting the message is the real challenge at first. Thank goodness for easy access to lab tests these days.
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Re: Newbie intro - with question

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ketoist wrote:Learning to listen to your body/gut is so important, but trusting the message is the real challenge at first.
Everyone here is different and most probably took a few tries to find the foods that work. Personally, a very low carb diet doesn't work for me - no energy and brain fog. And using cronometer, I know that I was getting enough calories at that point. [Edit]I also know that I just can't eat one meal day even over a couple hours - I can't eat enough calories. I usually eat 2-3 meals over about 8 hours.

And AIP (I did this for a short while) is really meant to only be for a short while. Sort of an extended elimination diet, getting rid of the usual suspects that cause problems. But, they do intend for you to reintroduce foods (one at a time) to see which ones are the bad actors.

There are many genes related to how we process fats and carbs, so you are spot on to definitely to listen to your body. Our most recent topic on some genetics can be found at Gene mutation evolved to cope with modern high-sugar diets

And given the muscle issues for you, there are many other areas to look at beyond food. Electrolytes, CoQ10 and glutathione come to mind. Lipid lab values also spike with losing weight. Search the site for some discussions on that.

Keep experimenting, and keep good records (cronometer is a good one, and add comments about how you feel so you can look back for patterns). It helps figure this diet thing out.
Last edited by SusanJ on Thu Jun 27, 2019 12:58 pm, edited 1 time in total.
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Re: Newbie intro - with question

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SusanJ wrote:
ketoist wrote:Learning to listen to your body/gut is so important, but trusting the message is the real challenge at first.
Everyone here is different and most probably took a few tries to find the foods that work. Personally, a very low carb diet doesn't work for me - no energy and brain fog. And using cronometer, I know that I was getting enough calories at that point. I just can't eat one meal day even over a couple hours - I can't eat enough calories.
I am noticing the same thing about myself: low-carb (</= 100g/day) are ok, but strict hard-core keto is not sustainable for me long-term. The metric that matters most to me at this point is the blood ketone approximation I get from my home measuring device, as I understand that ketone bodies are the food of choice for the brains of those prone to neurodegenerative diseases. I have to check out Cronometer, though. It sounds like a great app to have on this journey of self-discovery.

Thank you, Susan!
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