APOE4 /4 conflicting information

[Jiji]

i am 62 years old healthy and because my dad died of AD at 84 my primary doctors strongly suggested i get the genetic test (wish i had not)!! Double APOE4!!!

she sent me to a neurologist who works at an AD clinic but she specializes in traumatic brain injury —not AD (ok looking for some hope here)
i walked away with i “will definitely get AD at some point”! it is a certainty!!

but it seems in the UK and other places there is some skepticism on the certainty of this proclamation. i guess i wonder is everyone getting the “you basically can exercise but you will get AD” response? is there skepticism around this definitive diagnosis by other researchers. i get i am at very high risk —but risk and clinical onset are two different things.

yes i should listen to the doctor vs a discussion board but i am reading valid questioning whether these studies jumped the gun on the certainty factor

[Tincup]

—but risk and clinical onset are two different things.

Hi Jiji, welcome!. I'm a 69 year old 3/4 and my wife is a 65 year old 4/4. We are in the category of those who are optimistic about mitigating and delaying our risk. The biggest risk for AD is age. E4's do have a risk of getting it earlier. There are genetics that will also mitigate the 4 risk as well. Our founder and the President of ApoE4.info Inc, Julie G is a 4/4 and started getting severe symptoms around age 49. She's now around 62 and is doing very well. She's been very open about her story and here is a search with links where her story is told. The whole purpose of our group is that there are things you can do.

[Jiji]

thank you I appreciate that. I guess I wanna know how definitive this research is because it is new and I did read some conflicting research from Europe that yes of course the risk is high, but is it a diagnosis that we’re all headed that direction? I don’t have time for them to come up with a cure

[Andrea Hamilton]

i am 62 years old healthy and because my dad died of AD at 84 my primary doctors strongly suggested i get the genetic test (wish i had not)!! Double APOE4!!!

she sent me to a neurologist who works at an AD clinic but she specializes in traumatic brain injury —not AD (ok looking for some hope here)
i walked away with i “will definitely get AD at some point”! it is a certainty!!

but it seems in the UK and other places there is some skepticism on the certainty of this proclamation. i guess i wonder is everyone getting the “you basically can exercise but you will get AD” response? is there skepticism around this definitive diagnosis by other researchers. i get i am at very high risk —but risk and clinical onset are two different things.

yes i should listen to the doctor vs a discussion board but i am reading valid questioning whether these studies jumped the gun on the certainty factor

Hi Jiji,

I am a support intern here at APOe4 and I would like to welcome you to the site. I'm sure it was difficult to learn of your ApoE4/4 status, especially after losing your dad to AD. But Tincup and many of the other members of the forum believe and in fact bear witness to the idea that with this knowledge, you can have some influence on your fate. Many are in their 70s and 80s with no sign of AD. You now have an opportunity to practice lifestyle strategies that might minimize your chances of developing the disease, delay its onset, or mitigate its effects. You hit the nail on the head when you said "risk and clinical onset are two different things".

Yes, the evidence and peoples' interpretations can be confusing and sometimes contradictory. But this website is a source of encouragement, information and inspiration, and a great starting place to look into what you can do to prove the doctor wrong who told you it was "a certainty". Even large population studies of people your parent's age show that only 60% of people with ApoE4/4 status develop mild cognitive impairment or AD by age 85 (40% do not, so even in people with Apoe4/4 AD is largely age-related and not a foregone conclusion). For your generation, which is also mine, those odds will no doubt improve with more knowledge of healthy lifestyles and preventive strategies.

You have come to a great place to delve into your options. A great place to start is with the Primer . It offers research-based prevention strategies and was written by a practicing M.D. with ApoE4/4

The How-To Guide will help you learn how to navigate the site. It covers topics such as navigating the forum, private messaging, and searching. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response.

You have a great deal of control over your health outcomes and this site can be immensely helpful in ensuring those are the best they can be. Your genetic makeup by no means determines your destiny.

Please feel free to ask any specific questions you might have. A member almost always has an answer at hand.

In health,
Andrea Hamilton

[Jiji]

thank you for that —i feel better already coming here

[Jiji]

also some information on this site is from before the study released this May that had my practitioner telling me i absolutely would get AD —but again i see recent reports offer conflicting view points in risk vs. prognosis ..thank you

[NF52]

also some information on this site is from before the study released this May that had my practitioner telling me i absolutely would get AD —but again i see recent reports offer conflicting view points in risk vs. prognosis ..thank you

Hi Jiji,
As Andrea said, you have many great data points and lifestyle choices in your favor. I am a few months away from turning 73 and with 2 copies of ApoE 4, I’m currently working on reviewing grant applications that are related to TBI, a field I worked in 30 years ago with schools and parents, and have been driving to and through crazy traffic in Washington, D.C. to spend time with a new granddaughter. My husband & I exercise regularly and had a great trip to Spain & Portugal last year that I enjoyed planning out for 8 cities. I’m not unique. I know a woman my age with ApoE 4/4 who helps coordinate a community groups through a newsletter and another who is a supervising judge, and a man who is a few years younger than me who is an organizational consultant to companies.

That article in Nature was misinterpreted, in my view. The authors said that almost all people with ApoE 4/4 who have been followed for many years in a long-running study show biomarkers of Alzheimer’s disease (amyloid plaques and some tau) by the age of 85. I had “elevated amyloid” at the age of 65. But just like coronary artery plaques are not heart attacks, amyloid plaques are not Alzheimer’s dementia!

The article also mentioned that they saw “symptoms” of Alzheimer’s disease by age 65. But having heard one of the authors, Dr. Reisa Sperling, speak about that specific finding, she made clear that she means they can see VERY subtle changes in someone’s skills, that would be unnoticed by anyone not looking for that. If ten years ago I could repeat a 4 sentence paragraph with about 80% accuracy after hearing it once, and now I can repeat it with about 60% accuracy, that might be intriguing. But it isn’t predictive!! Especially when people who exercise do much better than people who don’t. Same for people who stay connected with others and feel they have a purpose and look forward to the future.
The most encouraging news, in my opinion, is that those authors recommended looking at ApoE 4/4 separately from ApoE 3/4, to accelerate research into how to reduce the risk. The pace of research into metabolism, synapses, inflammation etc is fast!! A neurologist who specializes in TBI is likely not current with ApoE 4/4 studies.
You can look forward to articles over the next few that make your heart sing!
Nancy

[Jiji]

thank you thank you so much. I so appreciate the insight and the hope. my dad had Alzheimer’s and he also had alcoholism—severe alcoholism . he died at 84. he had blockage in his carotid arteries that he did not want to go under and have cleared. he died of Alzheimer’s though in a kind of depressing nursing home, and I just never thought of that as my destiny.!

[NF52]

thank you thank you so much. I so appreciate the insight and the hope. my dad had Alzheimer’s and he also had alcoholism—severe alcoholism . he died at 84. he had blockage in his carotid arteries that he did not want to go under and have cleared. he died of Alzheimer’s though in a kind of depressing nursing home, and I just never thought of that as my destiny.!

Sadly, alcoholism is a serious risk for dementia by itself. About 30% of people given the clinical diagnosis of “Alzheimer’s “ in previous studies without biomarker confirmation , actually did not have it! Many had vascular disease, or neuro inflammation, and if older than 80, often had a different disease now known as L.A.T.E. Caused by TDP43 protein.

You can have a different future!

[er21]

4/4 does Not guarantee Alzheimer's! So many great examples of that in this community. Genes load the gun, environment and lifestyle pull the trigger.

ER