3/4 with questions

[ElenaH]

Hi there! I'm a 40 year old mother of 2. Just learned of my 3/4 status last week.

Unlike many here, I ordered 23andme for the express purpose of assessing my AD risk. And I have to admit I was pretty relieved to discover through Promethease that I was "only" an APOE4 carrier. My paternal great aunt was diagnosed with AD at the age of 59, so I feared one of the dreaded FAD mutations. Sadly, I'll never know if my father or his mother would've developed the disease - my grandmother died of lung cancer before I was born, and my father died of brain cancer at the age of 42.

I myself was diagnosed with stage 0 breast cancer at 37 (full mastectomy), so I'm not expecting to make it to 65. But some of the studies I've read about e4 carriers losing their cognitive "edge" midlife scare the hell out of me. I'm a software engineer. And in my field, they find ways to get rid of older employees who no longer perform at full capacity.

My biggest question is where to get started (besides the primer and Dr Bredesen's book, of course). I don't regularly see a doctor and hadn't even heard of some of the biomarkers you guys are measuring. As someone who's naturally thin and never a cholesterol problem (in spite of pounding junk food and leading a sedentary lifestyle), I didn't think I needed to worry about such things.

Now I'm wondering if I need to make an appointment with a physician and get a myriad of tests. Is all that really necessary, or is it enough to exercise and eat low carb? Any advice would be appreciated.

PS - My super laid-back husband also learned he's 3/4 and doesn't care at all. He's watched two of his grandparents die of AD and thinks it's a very peaceful way to go.

[slacker]

Now I'm wondering if I need to make an appointment with a physician and get a myriad of tests. Is all that really necessary, or is it enough to exercise and eat low carb? Any advice would be appreciated.

Welcome ElenaH;

The Primer and Dr Bredesen's book are great places to start, but they don't (and can't) address clearly how much of the recommendations to implement when the person is young and without cognitive decline. Your story about the different approach that you and your husband have concerning ApoE4 status is a perfect example. A conventional doctor will not be in a great position to help with this either, since they will not be familiar with the bulk of information you are learning about - it is not part of their many years of training.

You are young with good cognition, with the luxury of time to get your health house in order. I personally think that for you at this time, focusing on nutrition, exercise, sleep, and stress reduction is reasonable. Even these "simple" interventions are not simple! One step at a time. Having everyone in the house eat the same way will be beneficial for all; make small changes to avoid mutiny!

In the US medical system, it is easiest to throw in some labs at the time of a physical. Insurance companies are more likely to cover tests without an "appropriate" diagnosis under the umbrella of "prevention." No guarantees. Decide if you want your ApoE4 status to be part of your medical history; stating a concern about a family history of AD is equally compelling (although also part of your medical record if revealed). The insulin resistance labs (review the primer or End of Alzheimers) would be most helpful.

Consider bioidentical hormone replacement once perimenopausal. For future reference.

We are here to support each other on this journey...

[McGido]

My biggest question is where to get started (besides the primer and Dr Bredesen's book, of course). I don't regularly see a doctor and hadn't even heard of some of the biomarkers you guys are measuring. As someone who's naturally thin and never a cholesterol problem (in spite of pounding junk food and leading a sedentary lifestyle), I didn't think I needed to worry about such things.

I'm similar in that I've been able to eat terribly in the past and stay thin. Even in periods where I've been more sedentary. However, I'm a 31 year old male, so not sure if that was because I still had a fast metabolism at that time. I do find it can be tougher to eat healthy if you don't feel you have weight problems. But when I started looking at food as the fuel for my body I was able to eat alot healthier. It's like making the switch to fuelling your car with premium grade gasoline. You will notice a difference over time in your energy levels and over all well being. Very possible on top of the food actually fuelling you better, that there is some placebo effect that happens as well.

Now I'm wondering if I need to make an appointment with a physician and get a myriad of tests. Is all that really necessary, or is it enough to exercise and eat low carb? Any advice would be appreciated.

Depends on how in depth you want to go with it. I think testing as you get older is probably quite important to see if you are responding well to the changes you are making. All of us APOE4 still have our own specific gene expressions and environmental factors that make us all respond differently to various diets. Testing will allow you to better see if you are on the right track. I haven't done extensive testing either but I've cut out refined carbs, sugar, alcohol, chicken and red meat as a starting point.

PS - My super laid-back husband also learned he's 3/4 and doesn't care at all. He's watched two of his grandparents die of AD and thinks it's a very peaceful way to go.

My dad passed way in December and he battled with AD for about 5-6 years. Peaceful isn't a word that comes to mind for me. I suppose through the disease as you lose yourself and memories you do also lose the fear of dying as you are not keenly aware of much by the end. I suppose the term ignorance is bliss might apply at certain stages of the disease but I'd be more apt to label AD as a chaotic way to go rather than peaceful.

[ElenaH]

In the US medical system, it is easiest to throw in some labs at the time of a physical. Insurance companies are more likely to cover tests without an "appropriate" diagnosis under the umbrella of "prevention." No guarantees. Decide if you want your ApoE4 status to be part of your medical history; stating a concern about a family history of AD is equally compelling (although also part of your medical record if revealed). The insulin resistance labs (review the primer or End of Alzheimers) would be most helpful.

Slacker, thanks for the tip! I'm not worried about e4 showing up on my records at this point. I'm pretty sure a history of breast cancer already excludes me from most life insurance policies...

[ElenaH]

My dad passed way in December and he battled with AD for about 5-6 years. Peaceful isn't a word that comes to mind for me. I suppose through the disease as you lose yourself and memories you do also lose the fear of dying as you are not keenly aware of much by the end. I suppose the term ignorance is bliss might apply at certain stages of the disease but I'd be more apt to label AD as a chaotic way to go rather than peaceful.

McGido, really sorry to hear about your father. I agree with you that AD is *not* what I'd call peaceful. My great aunt (she was like a grandmother to me) deteriorated for 20 long years before finally succumbing at 80. In many ways I think her sister, who died of lung cancer at 57, had a better deal.

Thanks so much for the advice on diet! I plan to go vegan and cut out carbs. And I'll follow up with bloodwork at my next physical to make sure I'm on the right track.

[MarcR]

I'm not worried about e4 showing up on my records at this point. I'm pretty sure a history of breast cancer already excludes me from most life insurance policies...

I doubt BC has much of an effect on the willingness to write a long term care policy; e4 on the other hand ...

[NF52]

Hi there! I'm a 40 year old mother of 2. Just learned of my 3/4 status last week. I myself was diagnosed with stage 0 breast cancer at 37 (full mastectomy), so I'm not expecting to make it to 65. But some of the studies I've read about e4 carriers losing their cognitive "edge" midlife scare the hell out of me.

Hi ElenaH,
I won't try to answer your question on labs, diet and what to do first. I do, however, question your belief that you won't live to 65 after a diagnosis of Stage 0 breast cancer at age 37. I'm sure you have the definition below memorized, but for those who don't, this is from the National Breast Cancer Foundation:

Stage 0 breast cancer,ductal carcinoma in situ (DCIS) is a non-invasive cancer where abnormal cells have been found in the lining of the breast milk duct. In Stage 0 breast cancer, the atypical cells have not spread outside of the ducts or lobules into the surrounding breast tissue.

Stage 0 Breast Cancer Definition
I do know that some Stage 0 cancer are LCIS, with a higher probability of recurrence that DCIS, but since you had a mastectomy I hope you have drastically lowered any odds of recurrence.

It's purely anecdotal, but I worked with a young woman who had an aggressive breast cancer diagnosed at age 27, and had both a mastectomy and preventative chemotherapy for a year. She is now about 62, with two grown children (She was told that the chemo would probably leave her sterile.) I would hope that your oncologist can give you a personalized risk assessment that will help you live with your concern about recurrence.

As for your worry that you will lose you edge as a software engineer, I think that's only a worry if you plan to be doing that at age 85. Apoe 4 is a dose-dependent risk factor (not determinative) for LOAD (late onset Alzheimer's disease) after age 65. You have only one of those alleles. I am an Apoe 4/4, who knew nothing of my risk until almost age 62, four years ago, and yet I was able to work in an intellectually challenging position supervising dozens of people until the age of 62, won competitive grants and did better on an SAT that I took at age 56 to get into a competitive master's program, than I did at age 17. I have never been able to draw, remember faces and names well, or play the piano, but like you, I worked in a field in which those deficits were either irrelevant or able to be worked around.

Your lifetime risk to age 85 of EITHER mild cognitive impairment or dementia is currently estimated for cognitively healthy participants ages 60-75 in a major clinical trial as 20-25% for people with ApoE 3/4. Give it 10 years and the knowledge of both lifestyle interventions and biological/pharmacological prevention and your risk may be far less than that.
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

Here is another article and an abstract that may reassure you:
Cognitive reserve in ageing and Alzheimer's disease

Education and Alzheimer disease without dementia: support for the cognitive reserve hypothesis

[ElenaH]

I doubt BC has much of an effect on the willingness to write a long term care policy; e4 on the other hand ...

I've given long term care a great deal of thought, and I've reached the conclusion it's not for me. Apologies for sounding grim, but if I can no longer dress and feed myself (not to mention use the bathroom alone), then it's time to peace out.

It also looks, somewhat ironically, as if long term care insurance might not be available for the long term
https://www.nytimes.com/2017/05/12/heal ... urers.html

[ElenaH]

It's purely anecdotal, but I worked with a young woman who had an aggressive breast cancer diagnosed at age 27, and had both a mastectomy and preventative chemotherapy for a year. She is now about 62, with two grown children (She was told that the chemo would probably leave her sterile.) I would hope that your oncologist can give you a personalized risk assessment that will help you live with your concern about recurrence.

I loooove this story! Thank you so much for sharing it.

Yes, my oncologist was very clear that I'd brought risk of recurrence down to practically zero with the mastectomy, and I couldn't be happier about that decision. What I'd meant earlier about not expecting to make it to 65 had more to do with my family's history of cancer in general. Given that my father died at 42 of brain cancer, it certainly doesn't bode well that I developed DCIS a full 20 years before most women. This isn't something that bothers me, though. We live in a culture where everyone expects to make it to old age (not that 65 is old by any means!), but I like to think of it as a luxury. If I live long enough to raise both my children, everything else is icing on the cake

As for your worry that you will lose you edge as a software engineer, I think that's only a worry if you plan to be doing that at age 85. Apoe 4 is a dose-dependent risk factor (not determinative) for LOAD (late onset Alzheimer's disease) after age 65. You have only one of those alleles. I am an Apoe 4/4, who knew nothing of my risk until almost age 62, four years ago, and yet I was able to work in an intellectually challenging position supervising dozens of people until the age of 62, won competitive grants and did better on an SAT that I took at age 56 to get into a competitive master's program, than I did at age 17. I have never been able to draw, remember faces and names well, or play the piano, but like you, I worked in a field in which those deficits were either irrelevant or able to be worked around.

NF52 this has made me feel so much better, you have no idea. Here I am at 40, feeling sorry for myself and wondering if I'll have to switch to a less challenging career, and you were off getting masters degrees in your 50's. I'm going to shut up and forget about those studies I read - doesn't sound like they applied to you at all.

Thanks so much again for your thoughtful reply. You put me in a great mood this morning!

[Orangeblossom]

Hi Elena,

I noticed you plan to go vegan- I'm sure you know this already but it is important to take B vitamins on a vegan diet, especially B12 as you can't get it otherwise. Also B12 may be helpful in preventing AD in future. For more info the Vegan Society has info on the vitamins etc. https://www.vegansociety.com/resources/ ... itamin-b12 Omega 3 oils can be good to take as well if you're not going to eat fish..