slinkystrudels wrote:Hi there - this is my first post and I found out about a week ago that I am 4/4 carrier. ...
1) Do I need a cognoscopy (now, age 40) and then tests every year? I’m so scared that this will take over my whole life and I will spend the next few decades ‘panicking’ until I start seeing signs of cognitive decline and then I will just lose it completely
2) The other main thing that’s concerning me is that I have been on and off Fluoxetine for about 8 years ( more on) for my anxiety and from what I’ve read this can further increase the risk of AD? I take 40mg per day currently. I want to come off of it but am so scared to go back to the way I was before and not be able to cope . I know my anxiety will be worse because of learning my genetics.
Hi slinkystrudels!
A warm welcome from a fellow 4/4! Judging by your user name we may also share some German ancestry and a love of strudel !
I'm so glad you shared your recent news and concerns; this is a community which now considers you our friend, our family and our contributor.
I like to think that I'm not cursed but "favored" with an ancestral allele that allowed my very ancient ancestors to travel to distant lands (now northern Europe, Scandinavia, the UK and Ireland) from sub-Saharan Africa, where up to 40% of some population groups have ApoE 4. It allowed those ancestors to store fat for bitter winters and poor harvests (something my body still thinks it has to do!) and also allowed us to develop both strong verbal skills (according to some studies of young people with ApoE4) and that deep empathy that can morph into all-too-real images of our own imagined future and the anxiety and panic attacks when our brain decides "time to fight, flee or freeze this place!". BTW, exercise is our friend in the battle against panic, since I strongly believe it tricks our brains into thinking we ARE fighting the good fight. Some recent, well-designed studies found that people who walked in greenspace (parks, woods, etc) showed fewer anxiety than those who exercised inside.
Can Exercise Explain the Health Benefits of Natural Environments?
You have already viewed this news as a needed "jolt". Think of those genes as prodding you to move from "suffering from anxiety" to "living with anxiety" and thriving with ApoE 4/4. The pace of research of all kinds is impressive--and gives you lots of time to watch, learn and feel at ease with your choices.
So here's advice from someone who managed to also end up in the ER at about your age with what turned out to be a panic attack from hyperventilating with weird stomach flu symptoms that my sleep-deprived post-partum brain interpreted as a stroke.

So I know how quickly panic attacks can come on, and learned how to "read" my body and use some of the
breathing techniques recommended by Birdie18 and generally remind myself that "I've got this; my body can fix itself". That and some medication as needed made a huge difference--and it turns out that I didn't need it forever, but did through the 40's.
You may want to talk to your doctor, asking them not to put your ApoE 4/4 status into their records, but letting them know you are concerned about fluoxetine. Here's some good news about Fluoxetine from a 2020 article in Harvard Health:
https://www.health.harvard.edu/mind-and ... your-brain If you scorll down to the chart, you'll see that fluoxetine is one of the
recommended alternatives to benzodiazepines. Unlike that class of drugs, fluoxetine, buproprion, sertaline, certalopram and others have NOT been found to associated with late-late risk of dementia.
You could also ask about ordering some labs covered by insurance to check for "low-hanging fruit" to improve: B-12 (take 50 mcg methylcobalamin B-12 as needed to get above 500 on a blood test, was the advice my clinical study nurse practitioner gave), and a lipid profile of HDL, LDL and total cholesterol. If you have a family history of early heart attacks or strokes, ask about an ECG and a cardiac stress test. If you live in an area without a ton of sunlight, get a Vitamin D test and add that. Each piece of information that you get acts like a brick in building a wall against panic, and improves your health for the long haul. If not covered by insurance, many of these tests are available in Direct-to Consumer options, described in our Wiki
Direct-to Consumer Lab Testing
Others may choose to get a "cognoscopy" at your age; however, the best evidence seems to be that the changes seen in the brain in the 15-20 years before a diagnosis of Alzheimer's are highly unlikely to be observable before age 50-55 at the earliest. instead, check out the strategies recommended by Dr. Stavia in the
Primer. Our genes are not our destiny--merely one small piece of coding in a complex system built to be resilient in the face of adversity.
Hugs from a healthy and now happy ApoE 4/4.