Dealt the 4/4 gene card and have intense anxiety about basically everything

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Chrimsonqueen
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Dealt the 4/4 gene card and have intense anxiety about basically everything

Post by Chrimsonqueen »

Hello All,

I received my results from 23andme about 2 years ago. Initially, I noticed that I had an “increased risk” of getting late-onset Alzheimer’s. I didn’t think anymore of it because I worry a lot and didn’t want to add this to the list. Today I was assigned homework in my biochemistry course asking about Apo-E and it’s link to Alzheimer’s. I’m looking into this subject and thinking “wow, this is scary.” Then, I’m thinking about my results and decided to look more into them. Low and behold, I have two Apo-E4’s (thanks mom and dad :/). As you can imagine, I have since went into a spiral of dread, fear, and worry with many shed tears. I am a worrier and will probably end up obsessing about this for a while. I’ve done a bit of reading (on here), which has calmed my nervous. I have a few things I’m curious about and was wonder if someone could help satiated my curiosity. First, Ive read in a research paper that 4/4’s have a 91% chance of getting AD at the age of 68. Is this still substantiated? I believe this was research from 1997, but am unsure. Secondly, I’ve read that 2-3% of the population is 4/4. How do they know this if genetically testing is sparse? Third, I’ve read about the input of your genetic data into another program (Promethease?) to get more information, such as early-onset Alzheimer’s associated genes. My grandmother recently passed at 94 and she was sharp as a tack. My grandfather is 75 and is also sharp as a tack. As far as I know, no one in my family has been diagnosed with Alzheimer’s. Based on these facts, I think it’s best that I don’t look further into my genetics. But, I’m wondering if knowing and being able to combat it would be better? Fourth, my mother knows that she is 3/4, but my father doesn’t know my results. He has to be x/4. Should I tell him? Fifth and final, I am in my early twenty’s. What are the most important health steps to implement? I read over the health info in the opener, but it’s a bit overwhelming. From what I’ve gathered, I should be more concerned with cardiovascular health than memory loss/AD. If you’ve made it the end of this, thank you so much. I’m not sure where to go from here and need someone to talk to about this.

Sincerely,

A girl who wants to live a long, healthy life.

P.s stay safe out there!
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Tincup
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Re: Dealt the 4/4 gene card and have intense anxiety about basically everything

Post by Tincup »

Chrimsonqueen wrote: Wed Jan 19, 2022 9:24 pm As you can imagine, I have since went into a spiral of dread, fear, and worry with many shed tears. I am a worrier and will probably end up obsessing about this for a while.
Hi Chrimsonqueen,

Welcome!

I responded recently to another 20's year old 4/4 here. You can read my post and suggest reading other good responses in the thread.

I'm 66 and 3/4 married to a 62 year old 4/4.
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Re: Dealt the 4/4 gene card and have intense anxiety about basically everything

Post by NF52 »

Chrimsonqueen wrote: Wed Jan 19, 2022 9:24 pm ... Low and behold, I have two Apo-E4’s (thanks mom and dad :/). As you can imagine, I have since went into a spiral of dread, fear, and worry with many shed tears. I am a worrier and will probably end up obsessing about this for a while. I’ve done a bit of reading (on here), which has calmed my nervous. I have a few things I’m curious about and was wonder if someone could help satiated my curiosity. First, Ive read in a research paper that 4/4’s have a 91% chance of getting AD at the age of 68. Is this still substantiated? I believe this was research from 1997, but am unsure. Secondly, I’ve read that 2-3% of the population is 4/4. How do they know this if genetically testing is sparse? Third, I’ve read about the input of your genetic data into another program (Promethease?) to get more information, such as early-onset Alzheimer’s associated genes. My grandmother recently passed at 94 and she was sharp as a tack. My grandfather is 75 and is also sharp as a tack. As far as I know, no one in my family has been diagnosed with Alzheimer’s. Based on these facts, I think it’s best that I don’t look further into my genetics. But, I’m wondering if knowing and being able to combat it would be better? Fourth, my mother knows that she is 3/4, but my father doesn’t know my results. He has to be x/4. Should I tell him? Fifth and final, I am in my early twenty’s. What are the most important health steps to implement? I read over the health info in the opener, but it’s a bit overwhelming. From what I’ve gathered, I should be more concerned with cardiovascular health than memory loss/AD. If you’ve made it the end of this, thank you so much. I’m not sure where to go from here and need someone to talk to about this.

Sincerely,

A girl who wants to live a long, healthy life.

P.s stay safe out there!
Please accept a warm welcome and a virtual hug from another woman with ApoE 4/4 who has sailed past that dreadful "91% chance at 68" prediction--it's dreadful science!! I love your biochem interest and strategy to find more info to balance your anxiety.

First some news about those tears: tears are always okay--they let us release the flood of emotion any unexpected news of uncertain risk brings. It does get better--starting with when we realize that studies from 1997 are about as useful as 1997 computers, 1997 phones, or 1997 advice on careers for women!

Here's some info to help with the dread. Weirdly, I saw that same link when I got my 23&me results in 2014 at almost age 62. And now, at almost age 70, having been tested repeatedly with hours of neuropsychologists tests for studies of people with high risk and normal cognition, and having had MRIs of my brain, I know that I and MANY other ApoE 4/4s have normal cognition, normal brains and normal lives beyond the age of 68--and well into our 70's and 80's.

Here's why those early studies were flawed: In the 1990's APOE4 4 was only tested in people who came to Alzheimer's centers (who would likely be younger because of the concern about their functioning--few people bring an 87 year old like my grandmother to a memory center when she starts to forget some things.) They had NO IDEA how many people in the population had normal memory at age 68. In 2017, an international group of researchers did a meta-analysis using longstanding population studies (one was the Framingham Heart Study) and looked at the risk of people with ApoE 4 who were 55 or older in 2017 (my generation) for a diagnosis of either Mild Cognitive Impairment (MCI) or Alzheimer's by the age of 85 (our expected lifespan). Here's their results: APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts
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.


That means that people like me, raised on casseroles, with no PE until high school, no knowledge of inflammatory markers, the need for self-care and the importance of exercise--still have a 45-79% chance of making it to 85 just fine--like your family members! I was in the Generation Study until it ended in 2019 and "met" virtually or in person a law professor, a former chief financial officer of a national company, a competitive bridge player, an ombudsman for assisted living centers, a national rater for AP exams. The Generations 1 study, which enrolled cognitively normal people with ApoE 4/4 above the age of 60, had no problem finding more than 1200 or so such people, even with their rigorous screening process and the usual rate of about 2/3 of people who start screening choosing not to enroll in studies.

2nd question: As for the 2-3% figure--we now have millions of people who have taken DNA tests and many countries have researchers who have looked at the population percentages. Don't blame your parents for falling in love with another ApoE4--25% of people with European ancestry have one or two copies, and in some countries like Finland, that rises to close to 40%. (People with African, Caribbean African, Asian, South Asian and Hispanic ancestry show broadly similar percentages, but with sometimes significant variation in risk profiles.)

3rd question: I've used Promethease and found it interesting, but at your age, unless you want to get your Ph.D. in genetics, I wouldn't sweat the details. We are way more than our gene profile. Focus on "nurture" not "nature" to give your brain "cognitive resilience" and "cognitive reserve" Association of lifelong exposure to cognitive reserve-enhancing factors with dementia risk: A community-based cohort study
Our findings point to the importance of adopting a life-course perspective in designing interventions aimed at enhancing cognitive reserve in order to prevent or postpone dementia incidence. It is never too late to initiate interventions because even late-life activities were associated with lower risk of dementia in our study. Nevertheless, interventions aimed at earlier life periods might be more beneficial, not only because greater exposure frequency has been linked with a reduced risk but also because of the correlated nature of reserve contributors over the life course. Importantly, these interventions should be equally effective among individuals with and without genetic susceptibility.
4th question: You've seen yourself that this information can be distressing. Many people adopt the view that healthy living can occur without knowing genetic test results. I know of people who were very upset to be encouraged to take a 23&me test, or with being told by a 1st degree relative of their status. For now, you can care about your dad and support him having time for exercise or share your healthy food likes without giving him this news.

5th question: Take a deep breath and remind yourself that you are 2 generations removed from the folks being treated NOW for AD and heart disease. Do what you would recommend anyone your age do: Enjoy school, meet friends who may be with you for a year or a lifetime, try new things, believe that you will have multiple careers over your lifetime and that COVID will not always be front and center. Try remembering previous times when you were anxious (starting college, moving away from home, declaring a major) and how you felt before and then 6-12 months late. Try the same future-casting with this: If your anxiety is at a 10 now, what do you think it will be in 2 weeks, 6 months, after graduation, when you are 30? If it's overwhelming, talk to someone and don't be afraid to add something (yoga, meditation, anti-anxiety meds) to your routine.

My generation is doing everything we can to be sure your generation writes a different ApoE 4/4 story.
4/4 and still an optimist!
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Re: Dealt the 4/4 gene card and have intense anxiety about basically everything

Post by JeniO »

Chrimsonqueen wrote: Wed Jan 19, 2022 9:24 pm Hello All,

I received my results from 23andme about 2 years ago. Initially, I noticed that I had an “increased risk” of getting late-onset Alzheimer’s. I didn’t think anymore of it because I worry a lot and didn’t want to add this to the list. Today I was assigned homework in my biochemistry course asking about Apo-E...

P.s stay safe out there!


Hello Chrimsonqueen,

Welcome to APOE4.info! We're glad you're here.

It sounds like your health is important to you and your love of learning led you to find out some surprising information in your DNA! I believe you will find (actually it seems that you already have heard from) many people here that are living proof that our genes are not our destiny! Our members are very supportive, and I think you will find their stories inspiring and encouraging.

You can learn more about our members and read their stories on the Our Stories Forum

If you haven't found them already, these links may be helpful to you as you look around the site:

Here is a link to the primer and our How to Guide.

As you may have already seen, there is a helpful search tool available in the top right-hand corner of the site that you can use by clicking the three dots next to your log-in id. You can use that to search for topics in the various forums.

I hope you will take courage from the fact that you are not alone - so many in this forum have been there - and that you can control so many factors that we now know contribute to AD.

We are glad you found us and hope that this site will continue to be useful to you in your journey.
Be well,
Jeni
Functional Medicine Certified Health Coach
National Board Certified Health & Wellness Coach
"Don't judge each day by the harvest that you reap but by the seeds that you plant." - Robert Louis Stevenson
Chrimsonqueen
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Re: Dealt the 4/4 gene card and have intense anxiety about basically everything

Post by Chrimsonqueen »

Chrimsonqueen wrote: Wed Jan 19, 2022 9:24 pm Hello All,

I received my results from 23andme about 2 years ago. Initially, I noticed that I had an “increased risk” of getting late-onset Alzheimer’s. I didn’t think anymore of it because I worry a lot and didn’t want to add this to the list. Today I was assigned homework in my biochemistry course asking about Apo-E and it’s link to Alzheimer’s. I’m looking into this subject and thinking “wow, this is scary.” Then, I’m thinking about my results and decided to look more into them. Low and behold, I have two Apo-E4’s (thanks mom and dad :/). As you can imagine, I have since went into a spiral of dread, fear, and worry with many shed tears. I am a worrier and will probably end up obsessing about this for a while. I’ve done a bit of reading (on here), which has calmed my nervous. I have a few things I’m curious about and was wonder if someone could help satiated my curiosity. First, Ive read in a research paper that 4/4’s have a 91% chance of getting AD at the age of 68. Is this still substantiated? I believe this was research from 1997, but am unsure. Secondly, I’ve read that 2-3% of the population is 4/4. How do they know this if genetically testing is sparse? Third, I’ve read about the input of your genetic data into another program (Promethease?) to get more information, such as early-onset Alzheimer’s associated genes. My grandmother recently passed at 94 and she was sharp as a tack. My grandfather is 75 and is also sharp as a tack. As far as I know, no one in my family has been diagnosed with Alzheimer’s. Based on these facts, I think it’s best that I don’t look further into my genetics. But, I’m wondering if knowing and being able to combat it would be better? Fourth, my mother knows that she is 3/4, but my father doesn’t know my results. He has to be x/4. Should I tell him? Fifth and final, I am in my early twenty’s. What are the most important health steps to implement? I read over the health info in the opener, but it’s a bit overwhelming. From what I’ve gathered, I should be more concerned with cardiovascular health than memory loss/AD. If you’ve made it the end of this, thank you so much. I’m not sure where to go from here and need someone to talk to about this.

Sincerely,

A girl who wants to live a long, healthy life.

P.s stay safe out there!
Hey guys,

Thank you so much for replying! I’m feeling much better after spending sometime on here. After seeing all of the researching going into LOAD, I very hopeful that 40 years from now I can just take a pill to fix what’s broken! I do have one more question, 23andme tells me that I have an increased risk for high LDL due to my genes. I am assuming this is because of the 4/4 genes?

Have an awesome day guys!!
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Re: Dealt the 4/4 gene card and have intense anxiety about basically everything

Post by Tincup »

Chrimsonqueen wrote: Fri Jan 21, 2022 9:54 am do have one more question, 23andme tells me that I have an increased risk for high LDL due to my genes. I am assuming this is because of the 4/4 genes?
In 4's, saturated fat will commonly result in higher LDL. It does this to me as a 3/4 and even more in my 4/4 wife.

On your pill comment. There is a lot of research going on right now that is very promising. It may not be a pill, but maybe a variety of actions on your part. Harvard researcher, David Sinclair, hypothesizes that solving ageing will be much easier than solving many of the effects of ageing. To get a taste of this, listen to his podcast series (which just started and will only be six episodes. I've linked YouTube, but it is also available on Apple and other Podcast services.
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Re: Dealt the 4/4 gene card and have intense anxiety about basically everything

Post by daarmr »

I have dealt with anxiety over being a 4/4 also and still am sort of. Here is my story: I found out early on in the 23AndMe company's existence (2005?) because I wanted to. "To be forewarned is to be forearmed". I would have time to get involved and maybe figure something out. I never want to hear a doctor say "too late". So, I occupy myself with understanding the disease with the latest info; I eat well; try to keep active; practice mindfulness; get involved in clinical studies and basically get on with life.
I watched my mom die of Azheimer's and I do not want that fate. I put my faith in the incredibly smart scientists out there and realize that because of computers we are seeing science progress at the speed of light.
I'm 68 and actually I am optimistic that a treatment will be found to at least stop the progression of the disease before I get to 80 which is when my mom started showing signs.
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