Just found out :(

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
dlerner
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Just found out :(

Postby dlerner » Thu Feb 28, 2019 10:40 am

My husband and I just got our 23 and me results. His dad had alzheimer's so we were concerned. Surprised to find out I have one APOE 4 variant and he has none. Not what we expected or I was ready for. I'm very proactive and have been reading alot which is how I found this site. Just introducing myself. I'm 57 weigh 118 and am in really excellent shape and exercise all the time and eat well.
Would be interested in clinical trials. Have read about ones that try giving A2 to people who have A4. Anyone know anything about this? Any thoughts or advice appreciated. Just starting to get my head around this. Only found out a few hours ago.

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mike
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Re: Just found out :(

Postby mike » Thu Feb 28, 2019 11:55 am

dlerner wrote:My husband and I just got our 23 and me results. His dad had alzheimer's so we were concerned. Surprised to find out I have one APOE 4 variant and he has none. Not what we expected or I was ready for. I'm very proactive and have been reading alot which is how I found this site. Just introducing myself. I'm 57 weigh 118 and am in really excellent shape and exercise all the time and eat well.
Would be interested in clinical trials. Have read about ones that try giving A2 to people who have A4. Anyone know anything about this? Any thoughts or advice appreciated. Just starting to get my head around this. Only found out a few hours ago.

dlerner, there is a discussion about E4/E4 being given E2 in this thread: viewtopic.php?f=16&t=5884

Welcome, lots to learn. Folks with one E4 can do a lot to minimize their risks for getting AD - and exercise is one of the best. Check out the forum at viewtopic.php?f=33&t=1418 to get started on your journey.
Sonoma Mike
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dlerner
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Re: Just found out :(

Postby dlerner » Thu Feb 28, 2019 2:31 pm

Thanks so much. I will read later. Trying to absorb right now. I have 2 boys ages 27 and 29. Trying to figure out whether to tell them
Thoughts? They know we took the test but thinking I'm going to wait to see if they ask. What have others done and what reactions have they gotten. If my husband has 0 variants and I have 1 what does that mean for our kids?

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mike
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Re: Just found out :(

Postby mike » Thu Feb 28, 2019 2:58 pm

dlerner wrote:Thanks so much. I will read later. Trying to absorb right now. I have 2 boys ages 27 and 29. Trying to figure out whether to tell them
Thoughts? They know we took the test but thinking I'm going to wait to see if they ask. What have others done and what reactions have they gotten. If my husband has 0 variants and I have 1 what does that mean for our kids?

I would tell. In this case knowledge is power. If this convinces them to live a better lifestyle, is that so bad? If you are E3/E4 you have a 50% chance to pass the E4 to each of your kids. They will get an E3 from their dad, since that is all he has. So your kids will either be E3/E3 or E3/E4 - 50/50 chance.

This is a long slow process. Take a pause. As an E3/E4, you chances of getting AD by age 85 is probably only about 15% and you have time to lessen those odds. Plus great strides are happening in AD research right now.
Sonoma Mike
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Re: Just found out :(

Postby Chameleon » Thu Feb 28, 2019 3:21 pm

Hi dlerner,

Welcome to the APOE4 community! Glad you have joined us. It can certainly be a shock to learn your APOE status.

But on the positive side you are now armed with this knowledge and you are in good health. Now that you know you can approach this from a preventitive angle, which is where people have the most success.

Also, just because you have the gene does not mean it will express itself.
I would recommend exploring the Primer because it contains a ton of information. And the Wiki can hep you locate specific information.

I hope this site is helpful in attaining better help.

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Re: Just found out :(

Postby JudyH » Fri Mar 01, 2019 11:28 am

dlerner wrote:Thanks so much. I will read later. Trying to absorb right now. I have 2 boys ages 27 and 29. Trying to figure out whether to tell them
Thoughts? They know we took the test but thinking I'm going to wait to see if they ask. What have others done and what reactions have they gotten. If my husband has 0 variants and I have 1 what does that mean for our kids?


My situation is similar to yours. I am 58, just found out in Dec. I have 3 children from 28-32. At this point, the only person I told was one of my two brothers. The reason I told him is I suspect due to his body shape and some health issues that he is an e4 also and at 55 now is the time for him to find out if he so desires and make some long term lifestyle changes. I suspect our mother was an e4/e4 so I suspect both of my brothers have one e4. I have chosen not to tell my other brother at this time because he is two years out from a successful liver transplant. He has a lot of medical info to juggle right now and honestly, his important numbers with his new young liver are great, he used to be a T2 diabetic and is no longer. He used to have high cholesterol and take a statin and doesn't any more. I will tell him eventually but I see little he could change right now to decrease his chances of AD and I don't think this is something he needs on his plate right now.

I am also not telling my children right now. I want to study and learn more about the disease, about the risk factors and about how my biomarkers and personal risk factors measure up. This is not the time of their lives for them to worry about this. They are young, healthy, creating grandbabies for me and enjoying young families! I would tell them immediately if I suspected some symptoms in myself so they wouldn't be blindsided. But for right now, I am going to continue the slow steady work of improving my own risk factors and learning all that I can. When I tell them, I want to be confident and supportive in steps they can take and what might be coming down the pipeline in new knowledge that might make this a non-issue for them. They have noticed some of my changes and right now I am telling them a version of the truth, I have eliminated almost all sugar from my diet because my blood tests indicated that I am crossing over into pre-diabetes. True but not the real catalyst!

Mike was correct that your children are likely e3/e3's or e3/e4's like you. Their odds are 50/50 that they inherit your e4.
e3/e4
No family history of AD, they drop dead of heart attacks in their early 40's!
Celiac and Hashimotos

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mike
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Re: Just found out :(

Postby mike » Fri Mar 01, 2019 11:43 am

JudyH wrote:I am also not telling my children right now. I want to study and learn more about the disease, about the risk factors and about how my biomarkers and personal risk factors measure up. This is not the time of their lives for them to worry about this. They are young, healthy, creating grandbabies for me and enjoying young families!

There is more and more evidence that AD starts decades before symptoms. While I agree it makes sense to do your own learning first, I would argue that you are doing your kids a dis-service by not telling them soon. Being 3/4 is not the end of the world, and early lifestyle changes could protect them later on. Not everything is known, of course, but some things we do know - exercise and low carb diet, controlling blood pressure, getting enough sleep and avoiding concussions - all these seem to help.
Sonoma Mike
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dlerner
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Re: Just found out :(

Postby dlerner » Fri Mar 01, 2019 12:10 pm

I appreciate both of your input and think you both make very valid points. Both my kids (ages 27 and 29) and my brother (54) live healthy lives so I don't believe any lifestyle changes need to be made at this point. . For right now I am saying nothing unless they ask at which time I will be honest. They do know both my husband and I took the test. I am just starting on this journey and want to get as much information as possible so when I talk to them I have all the facts. I am looking to go to a geneticist and find out if I am a 2/4 or 3/4. Obviously would love to be a 2/4. Been doing lots of reading about diet and alcohol. Do you guys drink? I am a light drinker but do enjoy a glass of wine or cocktail on the weekends. What do you know about the effects of alcohol? How did you guys first find out you were part of this wonderful APOE4 group?

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mike
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Re: Just found out :(

Postby mike » Fri Mar 01, 2019 12:40 pm

I found out from 23andMe, but have a lot of family history, so wasn't surprised. I do drink some. There is a lot of debate on the site about alcohol. just use the magnifying glass at top to do a search.
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JudyH
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Re: Just found out :(

Postby JudyH » Fri Mar 01, 2019 12:46 pm

dlerner wrote:I appreciate both of your input and think you both make very valid points. Both my kids (ages 27 and 29) and my brother (54) live healthy lives so I don't believe any lifestyle changes need to be made at this point. . For right now I am saying nothing unless they ask at which time I will be honest. They do know both my husband and I took the test. I am just starting on this journey and want to get as much information as possible so when I talk to them I have all the facts. I am looking to go to a geneticist and find out if I am a 2/4 or 3/4. Obviously would love to be a 2/4. Been doing lots of reading about diet and alcohol. Do you guys drink? I am a light drinker but do enjoy a glass of wine or cocktail on the weekends. What do you know about the effects of alcohol? How did you guys first find out you were part of this wonderful APOE4 group?


I am content with my decisions on who do tell at this point. My children are all healthy, very physically active and only one of the three takes any medication (thyroid, just like her mama!).

You do not need a geneticist. Go to 23 and me and down load your raw data. Do a find of that data set for these two numbers (these are mine) -
• rs429358(C;T)
• rs7412(C;C)

The C's and T's are your guide and this will help you tell what you are -
https://www.geneticlifehacks.com/alzhei ... apoe-type/

I also am a light drinker and have no intention of giving it up at this time. I drink hard liquor neat so I get no added sugars from mixers or the alcohol.

I also took a 23 and Me test. I have Celiac Disease and was having a hard time convincing my son's to ask their doctors for testing for that. My daughter also has CD. 23 and Me offered that genetic testing on their list so I wanted to verify I was a genetic carrier. I am and much to my surprise I was also a genetic carrier of APOE4, whoops!! But honestly, I am glad I know and I will tell my kids so they too can decide to test and protect themselves in a few years as they approach 40 if I am still of sound mind and haven't told them sooner!
e3/e4
No family history of AD, they drop dead of heart attacks in their early 40's!
Celiac and Hashimotos


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