Newly discovered APOE 3/4 and trying to make sense of some things.

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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anotherdreamer
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Newly discovered APOE 3/4 and trying to make sense of some things.

Post by anotherdreamer »

Hey! Sad to find out I have one of the alleles but very happy and grateful to for this group. Found out about my unfortunate allele last week and have been down the rabbit hole ever since. I did discover that I have some protective genes on my side. I've got FOXO3 rs2802292 g/g, rs1935949 t/t and CETP rs5882 g/g. I'm hoping and praying those help me out.

My last cholesterol numbers (that should've been fasting but weren't) were:
HDL 59
LDL 120
Triglycerides 53

They aren't crazy good but doctor didn't seem concerned. Now that I know I have apoe 3/4, I'm concerned that my ldl is too high. At the same time, my triglycerides tend to run so low, is it even safe to go more low fat?

Some other stats that might be useful.
Female, 46, about 12 lbs overweight. Used to be much more active but I'm on and off with exercise for last few years. (Been ON like the energizer bunny since I found out about my apoe.)

Any advice on anything I wrote is greatly appreciated. I don't think I've slept well since I've found out. Not the greatest thing since I need all the sleep I can get these days!

P.S. If this looks familiar, it's because I had originally posted this in the primer section by accident.
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emmabarton
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Re: Newly discovered APOE 3/4 and trying to make sense of some things.

Post by emmabarton »

anotherdreamer wrote:Hey! Sad to find out I have one of the alleles but very happy and grateful to for this group. Found out about my unfortunate allele last week and have been down the rabbit hole ever since. I did discover that I have some protective genes on my side. I've got FOXO3 rs2802292 g/g, rs1935949 t/t and CETP rs5882 g/g. I'm hoping and praying those help me out.

My last cholesterol numbers (that should've been fasting but weren't) were:
HDL 59
LDL 120
Triglycerides 53

They aren't crazy good but doctor didn't seem concerned. Now that I know I have apoe 3/4, I'm concerned that my ldl is too high. At the same time, my triglycerides tend to run so low, is it even safe to go more low fat?

Some other stats that might be useful.
Female, 46, about 12 lbs overweight. Used to be much more active but I'm on and off with exercise for last few years. (Been ON like the energizer bunny since I found out about my apoe.)

Any advice on anything I wrote is greatly appreciated. I don't think I've slept well since I've found out. Not the greatest thing since I need all the sleep I can get these days!
Hello to you anotherdreamer!

Thanks so much for reaching out-- I'm so glad you found this community and are feeling really proactive about your future. Being dealt an ApoE4 gene is certainly not a death sentence and we have many community members whom are years older than you (with TWO copies of ApoE4) and they are not displaying any scary health concerns. Once you find out your status, the key is to educate yourself-- and it appears that you're doing just that! And yes, it will probably take time to adjust to this new information-- so your sleep loss makes sense. For me, I think it's helpful to remember that our genes are just blueprints-- they are not our destiny. I'm so glad you are here!

Cholesterol levels are a topic that is hotly debated. To understand a bit more about how cholesterol levels impact Apoe4 status, probably the best place to start is the primer. It was written by one of the community members (Stavia) whom is a medical doctor AND also has the E4/E4 polymorphism. In addition to the primer, here is a link to our wiki link on the subject and here is a link to a really in-depth thread about this specific topic. Actually, the wiki page is an amazing source of information-- for all your possible future questions.

And I'm sure the community would love to hear more about you! If you feel comfortable, please consider posting a little more about yourself in Our Stories. Not sure if you've checked out that part of the website yet, but reading about other people's experiences discovering their genetic status can really normalize things... it might even help you sleep a little better?

I hope this was helpful. Feel free to let me/us know if you have any other questions! Looking forward to your continued participation and hearing about your journey!

Light and peace,
Emma
healing happens in relationship
Neesy
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Re: Newly discovered APOE 3/4 and trying to make sense of some things.

Post by Neesy »

I am new to this group but have known about my APOE 3/4 for many years. Father and paternal grandmother had AD so I know I am high risk. Cholesterol labs have always been bad but lately triglycerides are up to 500. Taking 40mg Pravastatin for years but after new labs drugs were upped to 80mg Pravastatin and added 10mg Ezetimibe. What are thoughts from group on theses drugs? Obviously Statin hasn’t been helping in past. My BMI is very good and my diet is fairly good. I eat sweets rarely and exercise often. Age 69 and feel good so should I just not take these drugs and not worry about triglycerides? How important are they really? I’ve been taking 20mg Lisinopril for many years for high blood pressure. Neesy
NF52
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Re: Newly discovered APOE 3/4 and trying to make sense of some things.

Post by NF52 »

Neesy wrote:I am new to this group but have known about my APOE 3/4 for many years. Father and paternal grandmother had AD so I know I am high risk. Cholesterol labs have always been bad but lately triglycerides are up to 500. Taking 40mg Pravastatin for years but after new labs drugs were upped to 80mg Pravastatin and added 10mg Ezetimibe. What are thoughts from group on theses drugs? Obviously Statin hasn’t been helping in past. My BMI is very good and my diet is fairly good. I eat sweets rarely and exercise often. Age 69 and feel good so should I just not take these drugs and not worry about triglycerides? How important are they really? I’ve been taking 20mg Lisinopril for many years for high blood pressure. Neesy
A warm welcome, Neesy, from someone who is almost 69 and who is "Neeny" to my grandkids. I have two copies of ApoE 4 and like you, feel that my cognition is still going strong (I wish I could also say my BMI is very good like yours, but it is much better than it was 20 years ago.)

Your questions are great ones--and unfortunately if I've learned anything about what our risks are, including from discussions with top researchers who have NIH grants, it's that no one can tell us that answer. They can point to earlier studies of large groups and say that in general someone our age with one copy of ApoE 4 statistically (from a meta-analysis of large cohorts of people older than you and me) may have a 20-25% chance of a diagnosis of Mild Cognitive Impairment (MCI) or Alzheimer's disease by the age of 85.
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2). These values are consistent with our findings, but use round numbers for intelligibility, and broader ranges to reflect statistical and other sources of uncertainty.
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts Full disclosure: I was a participant in the Generation Study from 2017 to 2019, when it was ended, which is where I first saw these encouraging statistics.

Here's some encouraging news from a community-based study of people ages 75 and older. Community-based studies are more likely to reflect real-world risks than studies that recruited people to memory care research centers:
We estimated the risk of dementia occurrence in a cohort of individuals aged 75 y and older conditional on their engagement in ten activities that were expected to promote reserve in three stages over the life course. [They didn't provide a list of these activities, but many studies focus on education, occupational challenge (not rank, but having a job that requires problem-solving), social networks, exercise, reading, using technology.]
We found that, on its own, engagement in early-, adulthood-, and late-life reserve-enhancing activities was associated with a reduced risk of dementia....
An important finding was that increased frequency of engagement in stimulating activities over the life course was associated with a progressively reduced risk of dementia, suggesting a dose-response effect between life-course reserve and dementia risk. This effect appeared to operate irrespective of genetic predisposition to dementia... Having high scores on cognitive reserve-enhancing composite factors in all three periods over the life course was associated with the lowest risk of dementia (RR 0.40; 95% CI 0.20–0.81). Similar associations were detected among APOE ε4 allele carriers and noncarriers.
At the same time, it is never too late to initiate interventions aimed at risk modifying, since late-life engagement in stimulating activities was associated with a lower risk of dementia.
Association of lifelong exposure to cognitive reserve-enhancing factors with dementia risk: A community-based cohort study

It's also true that heart disease runs in my family (high blood pressure and vascular/AD dementia on my mother's side; coronary artery disease and cardiac arrest at age 67 for my father. Yet we are not our parents, and our environmental and lifestyle history is not theirs. One of the "gifts" I gave myself was to get a coronary artery scan at age 67 to rule out aortic stenosis and CAD. I got a score back of zero plaque and a cardiac age of 67. Yet I have a sky high Lp(a) score, which is highly heritable and can increase the risk of aortic stenosis and knowing my father's history and also having high LDL-P and mildly high triglycerides, I do take a statin. But lots of people on this forum don't. You may want to check out this forum topic:Apoe 4/4 and high triglycerides to see the range of views, and some links to podcasts that in part address TGs.

Please know that we feel hopeful that the next few years will continue to refine research for ApoE4 carriers along with the lifestyle factors which you are doing a superb job on optimizing! Check out our Welcome page for lots of suggestions on where to start exploring. And the Wiki section on Apoe4 Alzheimer's Research: What's New and What YOU can Do may also be of interest.
4/4 and still an optimist!
NoNotMe
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Re: Newly discovered APOE 3/4 and trying to make sense of some things.

Post by NoNotMe »

Welcome Nessy.

Thank you for reaching out, we're happy you found this community. I too found this site after learning that I carry the APOE4/4 polymorphism. The amount of knowledge and personal stories you'll find here is so encouraging. The key is to educate yourself and keep asking questions. I remind myself often that our genes are just blueprints. They are not our destiny.

Cholesterol levels are a topic that is hotly debated. To understand a bit more about how cholesterol levels impact Apoe4 status the best place to start is the PRIMER. It was written by one of our community members (Stavia) who is a medical doctor who has the E4/E4 polymorphism. In addition to the primer, here is a link to our WIKI. Specifically, the first link will take you to the section that covers statins. The WIKI is an amazing source of information and this link will take you to the main page.

I hope this was helpful. Feel free to let us know if you have any other questions. We look forward to your continued participation and hearing more about your journey!

Warmly,
Erin
Functional Medicine Health Coach
Integrative Nutritionalist
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