ApoE4.Info

New to site -- flustered, eager, still processing the news.

I received my one-gene-only status from a Boston Heart test, unlike many of you who, I'm guessing, learned via 23andme.

My sister did the latter and shared her report with me.

The tone of the word choice used on the 23andme test struck me as surprisingly mild: "you have one copy of the ε4 variant we tested. People with this variant have a slightly increased risk of developing late-onset Alzheimer's disease. Lifestyle, environment, and other factors can also affect your risk."

In comparison, the tone of the language used for the 'big reveal' on my Boston heart test was all flashing red lights and DANGER BEWARE.

It occurs to me that this marked difference of tone is enough to make someone shrug and say 'no big deal' versus 'ohmygosh I'm terrified and in big trouble here.'

anyone else notice this and think it's super significant, like me?

Punch wrote:New to site -- flustered, eager, still processing the news.

I received my one-gene-only status from a Boston Heart test, unlike many of you who, I'm guessing, learned via 23andme.

My sister did the latter and shared her report with me.

The tone of the word choice used on the 23andme test struck me as surprisingly mild: "you have one copy of the ε4 variant we tested. People with this variant have a slightly increased risk of developing late-onset Alzheimer's disease. Lifestyle, environment, and other factors can also affect your risk."

In comparison, the tone of the language used for the 'big reveal' on my Boston heart test was all flashing red lights and DANGER BEWARE.

It occurs to me that this marked difference of tone is enough to make someone shrug and say 'no big deal' versus 'ohmygosh I'm terrified and in big trouble here.'

anyone else notice this and think it's super significant, like me?

Punch, having a single E4 increases your risk of getting AD by something like 15% over someone without. It is not a death sentence. It appears that most single E4s can modify life style to reduce the risk. Use this site to learn - knowledge is power.

curious as to what the Boston test actually said. Do you mind sharing? thanks.

A warm welcome Punch. Thanks for taking the time to write your first post. I think anytime you find out your APOE status it can lead to a range of feelings. You had the courage to test and now that you know your status you can make some informed choices. As Mike says, knowledge is power. Having a single copy of e4 slightly increases your risk but the key here is that your lifestyle choices and environment can make the difference - helping to determine if genes express or not. In other words, you can make choices now that will certainly help lower your risk. You'll find loads of information on the site and lots of people sharing their experiences and knowledge. We are here to support one another and learn together.

If you are looking for more information, the Primer is the place to start (viewtopic.php?f=33&t=1418). If you have specific topics you want more information on then head into the Wiki and do a focused search. Post any questions and I hope you'll share more with us as you continue on your health journey. Again, welcome.

ChipW wrote:curious as to what the Boston test actually said. Do you mind sharing? thanks.

this test uses a stoplight metaphor: red, yellow, green color coding. My functional medicine expert must've been who put the 30% increased risk figure in my head, since that does not show up on my test results. Nor does my type of AD risk, disappointingly (inflammation, hormones/nutrients, toxins). Anyway, the ApoE section of my Boston results showed up with a bright red box and this verbiage:

Genotype associated with higher LDL-C
levels than the common E3/E3. E4
individuals can have greater intestinal
absorption and delayed clearance of
cholesterol than E3 leading to elevated
LDL-C.
Consider recommending lifestyle
modification and combination therapy
with statin and ezetimibe.

Punch wrote:New to site -- flustered, eager, still processing the news.

I'd also like to extend a warm welcome to the community Punch. You are in knowledgeable and supportive company!
Since you are new, I thought I'd point you to this entry in the Wiki titled How to Get The Most Out Of The ApoE4.info website. It's a well written guide to help you navigate as you are peeling back the layers.

Punch wrote:

ChipW wrote:curious as to what the Boston test actually said. Do you mind sharing? thanks.

this test uses a stoplight metaphor: red, yellow, green color coding. My functional medicine expert must've been who put the 30% increased risk figure in my head, since that does not show up on my test results. Nor does my type of AD risk, disappointingly (inflammation, hormones/nutrients, toxins). Anyway, the ApoE section of my Boston results showed up with a bright red box and this verbiage:

Genotype associated with higher LDL-C
levels than the common E3/E3. E4
individuals can have greater intestinal
absorption and delayed clearance of
cholesterol than E3 leading to elevated
LDL-C.
Consider recommending lifestyle
modification and combination therapy
with statin and ezetimibe.

So, I can't tell from that report whether you have one or two copies of the E4 version? If you do have two copies like me, then your risk does go up. Regardless, genes are only part of the story. Life style is critical.

On soapbox. It is irresponsible for Boston Heart to recommend specific drugs without knowing a person's labs or history. Ugh. Sometimes they are necessary, but it would have been more responsible to say it's important to work with your doctor to track your lipids and inflammation, and treat if necessary. Off soapbox.

Punch wrote:...My functional medicine expert must've been who put the 30% increased risk figure in my head, since that does not show up on my test results. Nor does my type of AD risk, disappointingly (inflammation, hormones/nutrients, toxins)...

Welcome Punch,

A "30% increased risk" sounds an awful lot like "You have a 30% chance of getting Alzheimer's". It really means "we think you might have 30% more than the risk of someone who is ApoE 3/3." The quote below is from a large meta-analysis of thousands of people, most of them from population-based studies. (Those are helpful when you're trying to figure out what the average person's risk is of something, rather than looking only at people who were diagnosed with a condition and asking "how many were ApoE 4 positive?"

For those ages 60-75, it predicts that someone with ApoE 3/3 has a 10-15% chance of being diagnosed with either Mild Cognitive Impairment or dementia by age 85. By comparison, those who are ApoE 3/4 ages 60--75 have a 20-25% risk by age 85. A "30% increased risk " over the 15% risk of someone who is ApoE 3/3 only equals a 19.5% risk, or the lower level of 20-25%. So not as bad as Boston Heart seems to want you to think!

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).

APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

thank you for explaining this so cogently. Altho I love math, I've never quite grasped this concept of statistical increase in my bones. It's the same logic as used for breast cancer. I *sorta* get it, but I don't think I could explain it to anyone else convincingly. You're right, my provider did not explain my r3/4 risk very well. He was shy and avoidant, as if dropping catastrophic news on me. He also knows both my parents have cognitive impairment, but in both cases it was brought on or at least aggravated by a fall.