New and confused

[Jcmainfinity]

I recently did a gene test for anxiety. I have Hashimotos and there were some genes that played a role with being anxious. WELL, I also found out I am a 4/4.... i DIDNT WANT TO KNOW THIS! My dr didn’t tell me that info was in there. I wasn’t warned!! I’m 35, have kids, great life , and now I’m devastated, depressed, no motivation....
Everything I read is horrible, just horrible . I can’t snap myself out of this. I have some questions.
1. Do both of my parents have to be carrying an e4 gene? Or is it possible they could be e3/e3?
2. What about my kids?
3. What are the actual statistics for AD and heart problems. ? I read so much and it’s making it worse.
I was a super happy mom 2 days ago. This shouldn’t be something I should have to worry about. I catch myself crying . It’s terrible. Is this overreacting??

[NF52]

I recently did a gene test for anxiety. I have Hashimotos and there were some genes that played a role with being anxious. WELL, I also found out I am a 4/4.... i DIDNT WANT TO KNOW THIS! My dr didn’t tell me that info was in there. I wasn’t warned!! I’m 35, have kids, great life , and now I’m devastated, depressed, no motivation....
Everything I read is horrible, just horrible . I can’t snap myself out of this. I have some questions.
1. Do both of my parents have to be carrying an e4 gene? Or is it possible they could be e3/e3?
2. What about my kids?
3. What are the actual statistics for AD and heart problems. ? I read so much and it’s making it worse.
I was a super happy mom 2 days ago. This shouldn’t be something I should have to worry about. I catch myself crying . It’s terrible. Is this overreacting??

Welcome, jcmainfinity,

I'm so glad you found this forum and hope we can help you take back your "great life" and plan for a great future. It's terrific that you recognize that information and getting answers to your questions is going to put you back in charge of your own destiny--because genes are not destiny.

So, for your questions:
1. Your parents each gave you one ApoE 4 allele. Each also has one other ApoE allele, since we all have two--one from each parent. The most common allele across the world is ApoE 3, so your parents are most likely to be ApoE 3/4. If so, each of your siblings has a 25% probability of being ApoE 3/3, a 25% chance of being ApoE 4/4 and a 50% chance of being ApoE 3/4. ApoE 2 is the third allele possibility for your parents, with about 5-10% of the population having one ApoE 2 allele.

2. Your children inherited one ApoE 4 allele from you and one ApoE allele from their father. As an example, my husband is ApoE 3/3 and I am ApoE 4/4 (and a healthy 67 years old). Each of my healthy 3 adult children, all about your age, are ApoE 3/4. My two grandchildren each had a 50% chance of getting a copy of ApoE 4 from my daughter and a 50% chance of getting a copy of her ApoE 3. (I don't know my healthy son-in-law's ApoE status, and don't worry about it.)

3. The statistics sometimes seem like they are all over the place! My first piece of advice is "consider the source and its date" when you read articles about your risk. As an example, one widely cited journal article that cited a high risk of dementia and a younger age of diagnosis is from almost 25 years ago, and was a study of 47 families is a rural area of Italy. People who were old enough to be diagnosed with dementia 25-35 years ago were born about 80-100 years ago!! And those 47 families may have been closely related, not reflecting a representative sample of people. Most of us would not turn to a scientific article from 25 years ago to buy a computer, to find careers for the next 30 years, or pick a healthy diet! Other articles are based on studies of people who showed up at memory clinics 15-20 years ago when ApoE testing was only done by research groups. Those groups naturally skew younger and more likely to have dementia than a group of people in a typical community. You wouldn't look at a dialysis clinic to find what the prevalence of diabetes is, so don't trust articles that are based on samples of people who were diagnosed with Alzheimer's at a clinic to decide what your personal risk will be in 30 years or more.

Here are results from two better-designed population-based studies. The first is comparing the higher prevalence of ApoE 4 in Scandinavian populations to more southern latitudes, finding that having ApoE 4 doesn't automatically increase dementia rates:

Paralleling previous studies, we found higher ε4 frequencies in subjects who lived at higher latitudes... Nevertheless, higher dementia prevalence in the Northern European countries was not demonstrated... In different populations, ε4 may exert differential influence on dementia...suggesting that lifestyle factors leading to longevity in Sweden might attenuate the negative influences of ε4.

[Emphasis added by me.] The Distribution of Apolipoprotein E Genotype Over The Adult Lifespan and in Relation to Country of Birth

And here is the conclusion from a 2017 meta-analysis of four large studies from the U.S. and Rotterdam, Netherlands that followed people for decades to look at lots of health information, not just ApoE 4. The conclusions below ONLY apply to people in my generation (ages 60-75), because people your age have decades to enjoy healthy eating, exercise, social and educational opportunities, career learning and benefits of better health care and (hopefully) cleaner air, water and food.

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).

[Emphasis added.] APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

In practical terms that means that at age 67, I have a 45-70% likelihood of living to age 85 or so with no diagnosis of even Mild Cognitive Impairment. If your parents are ApoE 3/4, they have a 75-80% chance of living their lives without MCI or Alzheimer's.

As for cardiac risk, we know so much more about how to prevent the most common forms of cardiac disease that the incidence of early cardiac disease and death is plummeting. My dad with at least one ApoE 4, died at age 67 of cardiac arrest after 25 years of diabetes. At age 67 now, I have a "cardiac age" of 39 on a coronary calcium scan with no plaque in my arteries and low scores on inflammation. None of my siblings has any sign of cardiac disease either.

And now some positives, even though you didn't ask about those:
Being ApoE 4/4 may mean you have above average skills on "executive functions" of planning, organization, problem-solving. You may also be above-average in IQ, and in verbal learning. Your anxiety may be an opportunity to harness your sensitivity to your own inner states, using mindfulness, cognitive behavioral techniques and other strategies, to interests that allow you to make a better world for future generations.
The more we study people with ApoE 4/4 who continue to be healthy, the more we realize that "protective" factors in how our brains are wired, opportunities we've had and choices we make, influence the expression of our genes.

I plan to continue to enjoy my children and grandchildren, learn Spanish, read scientific articles that stretch my thinking and travel for decades to come. I hope that you spend enough time on this site that these current, normal feelings become something that is also normal--a sense of your own ability to shape your future.

Hugs from a 4/4 friend.

[Creekside]

I recently did a gene test for anxiety. I have Hashimotos and there were some genes that played a role with being anxious. WELL, I also found out I am a 4/4.... i DIDNT WANT TO KNOW THIS! My dr didn’t tell me that info was in there. I wasn’t warned!! I’m 35, have kids, great life , and now I’m devastated, depressed, no motivation....
Everything I read is horrible, just horrible . I can’t snap myself out of this. I have some questions.
1. Do both of my parents have to be carrying an e4 gene? Or is it possible they could be e3/e3?
2. What about my kids?
3. What are the actual statistics for AD and heart problems. ? I read so much and it’s making it worse.
I was a super happy mom 2 days ago. This shouldn’t be something I should have to worry about. I catch myself crying . It’s terrible. Is this overreacting??

First, I'm really sorry that this news was dropped unrequested and unexpectedly. That's really unfortunate and unfair.

I'm a firm believer that our genes are not our destiny. They're learning more and more every day about ways we can influence our outcomes. And -- you have a LOT of time. Your kids have even more time. Honestly -- you don't need to do anything right now. When I was diagnosed with a serious auto-immune disease at about your age, I was shell shocked. Give yourself some time and grace. And hugs.

[CoachMT]

I recently did a gene test for anxiety. I have Hashimotos and there were some genes that played a role with being anxious. WELL, I also found out I am a 4/4.... i DIDNT WANT TO KNOW THIS! My dr didn’t tell me that info was in there. I wasn’t warned!! I’m 35, have kids, great life , and now I’m devastated, depressed, no motivation....
Everything I read is horrible, just horrible . I can’t snap myself out of this. I have some questions.
1. Do both of my parents have to be carrying an e4 gene? Or is it possible they could be e3/e3?
2. What about my kids?
3. What are the actual statistics for AD and heart problems. ? I read so much and it’s making it worse.
I was a super happy mom 2 days ago. This shouldn’t be something I should have to worry about. I catch myself crying . It’s terrible. Is this overreacting??

Welcome to the ApoE4.Info site Jcmainfinity! I’m so glad you found this supportive community to share your ApoE4 status, express your concerns, and learn from the great resources available to you that can help you lead a long and healthy life. Please rest assured in knowing that you are not alone. Many are overwhelmed when they learn their ApoE4 status. As NF52 shared so beautifully and thoroughly, having ApoE4 increases one's risk of late onset Alzheimer's, however our genes are not our destiny, and we have the ability to turn them on and off! Luckily you have time on your side to make lifestyle changes than can protect your cognition and help you to continue to lead a full and vibrant life!

If you haven’t seen it already, the primer is a great place to learn about the resources available on the ApoE4.info site that you may want to incorporate into your own learning journey. It was authored by a member physician who also carries two copies of the APOE-ε4 allele. The primer is regularly updated and provides information on the science behind the APOE-ε4 allele, tips on diet and lifestyle choices, biomarkers to check, and prevention strategies.

I see you’ve already had a chance to share your story with the community and received heart-felt responses from fellow members, NF52 and Creekside. As you are already seeing, this forum is a great place to share and receive support! Additionally, we've had several young people such as yourself join the ApoE4.info community recently with similar responses to yours. You may be interested in checking out threads that have been started by fellow members in their 30's (several state their age in the thread's subject), so they are easy to find in the Our Stories forum where you can read what fellow members have offered them in support. There is strength and support in community!

Glad to have you as part of the community! Best, Mandy

[Jcmainfinity]

I really appreciate the input y’all have given me. I’ve been a mess and my kids can see how upset I am. I guess I’m not hiding it very well
After reading these responses I was able to go have lunch and enjoy time with my baby. These past few days have been filled with reading the internet
The most upsetting part is I thought I was a 3/4 because my rs7412 showed no clinical abnormalities. The Rs429358 was homozygous. My dr said it was 4/4.
I just hope more research is being done and a cure or something to slow it will be around in 30 years.
Y’all have been a blessing

[Magda]

I really appreciate the input y’all have given me. I’ve been a mess and my kids can see how upset I am. I guess I’m not hiding it very well
After reading these responses I was able to go have lunch and enjoy time with my baby. These past few days have been filled with reading the internet
The most upsetting part is I thought I was a 3/4 because my rs7412 showed no clinical abnormalities. The Rs429358 was homozygous. My dr said it was 4/4.
I just hope more research is being done and a cure or something to slow it will be around in 30 years.
Y’all have been a blessing

Hi Jcmainfinity,
Welcome to the site! I am sending a big HUG your way!
I am happy to hear our messages and words helped you better to deal with the stress of receiving the information.

Like my friends already mentioned, genes are not set in stones and knowledge is power! You can influence your gene expression by applying strategies well described on this site, as well as in Dr Bredesen's book: "The End of Alzheimer's" .
You are probably, unintentionally, already doing it by addressing your thyroid gland issues. Hormonal support to the brain and the body is crucial in maintaining robust cognition.
As you will learn, preventing cognitive decline is addressing as many insults to the brain and the body as possible. The inflammatory diet is one of the, lock of sleep another, imbalanced gut flora as well as impaired glucose metabolic continue the list.

This forum is a great wealth of information and we are all here to answer your questions and provide support. So, please do not hesitate to post if questions come up.

Best,
Magda

[BradleyD]

I’m 36 and was blown away myself when I found my 4/4 status a year ago. I had serious anxiety even before I found out, so for awhile I pretty much went down a hole of depression. I climbed out and I’m 95% better than I was, so let me tell you what I did. First, please know that the human mind has a natural way of healing from grief. It takes awhile, but soon you will not feel nearly as shaken by this and it will not dominate your every thought. That’s important to know, that this feeling won’t last. Second, I was also worried about the early heart disease risk of a 4/4, and have some CAD in my family. I had a coronary calcium scan done that looks for plaque buildup in the arteries. I was POSITIVE that I would have buildup in an artery since I’m a 4/4. My score came back a ZERO. No plaque buildup whatsoever....and I even have high cholesterol. That goes to show that risk and reality are often very different. Third, there are 4 very plausible ways that things could go for us in life, and only one involves getting Alzheimers. The other 3 are that we die of one of a gazillion other causes that have nothing to do with APOE4, that over 30 years science finds a way to cure or treat Alzheimers, or lastly, we just don’t ever get Alzheimers. That helps put things in perspective for me. Also lots of people live to very old age with APOE4/4. There was a centenarian in one study I saw that was a 4/4. That gives me all the hope I need right there. There have also been huge studies that have tracked hundreds of 4/4s through old age and while their odds of getting Alzheimers is significantly higher, so many of them never get it. Another thing is APOE4 lowers your risk of getting cancer compared to APOE3s. Our hyperactive immune system kills off the cancer more often before it spreads. In closing, we’ve got long lives to live, the risk of Alzheimer’s picks up for us in 30 years. It’s been a long time since we were 5 years old, that’s how much longer science has to figure this out. Lots of reasons to be positive! I was a happy dad before I found out and I’m a happy dad again.

[Jcmainfinity]

2 of you mentioned a plaque test? Is that something I need to do if my cholesterol is fine? What causes the plaque build up?

[BradleyD]

As a young female with normal cholesterol your chances of having plaque in your arteries is a incredibly small. But, it gave me a lot of reassurance and my doctor called it a “15 year warranty against heart disease.” You may have a hard time getting a doctor to order one for you though without high cholesterol.

[TheresaB]

I've had two CACs - Coronary Artery Calcium scans, I had a little calcification, but the growth between the two scans (three year interval) after following a better, ApoE4 friendly diet, indicates low risk. If interested in more information on the scan, Ivor Cummins (The Fat Emperor) is a big advocate and he posted this informational 12 minute video Short Informational Video on CAC / Calcium Scanning