Age 36 and terrified of being 4x4

[Priya]

ADDITION TO ORIGINAL POST

After starting this post I decided to turn it into a weekly journal to chart my story from when I found out about having two e4s. I was terrified and my hope is that my journey and learnings will help others. As a minimum I promise to update it weekly. I am not a medical professional and so this very much represents a lay persons view. I find it’s best not to try and do these things alone.

Hello,

My name is Priya, I run my own coaching and consulting business and last year I took part in 23andme as I was interested in my ancestry. I’m British Asian. Both my Gradads got AD in their 70s so I was aware it was in my genes but in a vague naive kind of way.

I didn’t realise there would be health data and naively I clicked on the link to find I carry two APOE-e4 copies. I have only just come to realise that this puts me in the highest risk category for developing Alzheimer’s. I know this doesn’t mean I will get it for sure but it still makes me feel like a ticking time bomb.

I know I can manage a lot of this by losing weight etc and exercise but it has really really freaked me out and sent me into a massive existential life spin. I’m not usually one to worry but now I can’t seem to stop myself.

We have been trying for a baby and last year I found out I have an under active thyroid so it makes it hard for me to lose weight. Plus the long term issues related to having this auto immune disorder aren’t great either, I feel so scared. It’s terrifying to think I’m trying to create life whilst my own maybe cut short.

I’m 36, BMI 37. I’m seeing a nutritionist to help me cut our carbs and sugar. I sleep well and am the eternal learner but do sometimes blank in the middle of talking and lose my thread. This never used to happen. I’m scared it has started already and I will be a burden to my husband.

In my research I came across your group so I am reaching out to you in the hope you may be able to offer me some hope/words of wisdom.

Thanks in advance

Priya

[slacker]

Dear Priya;

Welcome to the website. Many people are quite distressed when they learn about their ApoE4 status. Having 2 ApoE4 alleles increases one's risk for late onset Alzheimer's, not early age of onset. This gene does not guarantee the condition. You are young and have time to optimize your health to avoid this.

Please look at our primer, written by an MD member. There is a wealth of information on what you can do to prevent Alzheimer's. It's not necessary to do everything at once; it's not a race. Step by step in the right direction. You've already started by focusing on weight and working on your thyroid.

[KellyS]

Hi, Priya,
I echo what Slacker said, checking out the primer here on the site is such an excellent place to start. I can understand your fears and anxieties, it must be such a shock to suddenly find out this information, and not be prepared for it. Slacker said something there that hopefully will help to bring you hope - and that is just remembering that your genes don't determine your destiny.

As far as your thyroid issues go, do you have Hashimoto's? That is just what I thought I got out of your paragraph there, so if not, I apologize. If you do, a fantastic place to get information is from Dr. Izabella Wentz, she lived through years of having Hashimoto's and didn't know it. Once she discovered it, she went on a journey of healing, and is now pregnant herself! Her website is full of great information, if you need it, www.thyroidpharmacist.com. (I also have Hashimoto's, so I can empathize with your plight on thyroid issues!).

Just know that this is a place where you can feel safe, feel free to ask any questions that you may have, or if you simply need a soundboard. The people on this forum are an absolute wealth of knowledge, I think you will love it here.

Warmly,

Kelly

[Priya]

Thank you slacker, I have made a start on the primer and it definitely calmed me for a moment.

Kellys - yes I have Hashimotos. I follow Dr Wentz and am thankful a lot of the solutions for managing thyroid stuff overlap with AD.

I just feel this overwhelming fear right now, I don’t want to spend the next 30 years feeling like I’m trapped in a time bomb which is how it feels today. I just keep crying and then thinking dark thoughts like what’s the point of trying for a baby etc?!

Thank you for being welcoming, sorry to be so bleak. I’m usually very upbeat but this has floored me.

[NF52]

My name is Priya, I run my own coaching and consulting business and last year I took part in 23andme as I was interested in my ancestry. I’m British Asian. Both my Gradads got AD in their 70s so I was aware it was in my genes but in a vague naive kind of way. ... I sleep well and am the eternal learner but do sometimes blank in the middle of talking and lose my thread. I feel so scared. It’s terrifying to think I’m trying to create life whilst my own maybe cut short.
Priya

Dear Priya,
Let me reach out as your virtual mom to give you a hug and some reassurance. I am 66 and also an ApoE 4/4 and I am here to tell you that somehow with those genes I managed to have 3 kids (and yes, my BMI was over 30 also for the last of those 3 pregnancies) and now have two healthy grandchildren. I also am still cognitively normal: I'm in a trial for a BACE-1 inhibitor with a ton of screening requirements, and being cognitively normal is one of them. I also was able to work in a demanding position until just a few years ago, and went back to school for a second master's degree at age 57, complete with commuting 12 hours every weekend home and working one day a week while a full-time student. And no, I'm not superhuman--just someone like you: I like to learn and still do!

So first, some facts that may calm your racing heart and brain, with some sources to back them up:
Your lifetime risk to the age of 85 of being diagnosed with either Mild Cognitive Impairment (which means most people live at home with some adaptation) or dementia is estimated as of 2017 to be between 30% and 60%. The reasons for the wide variation is that we don't know enough about the risk and protective factors. ApoE 4 is NOT a risk for early onset dementia; only a risk for it after age 65.
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

And here is a quote from a large lifestyle intervention study in Finland, with the memorable name of the FINGER study. This quote refers specifically to people with ApoE 4, who were older and also had risk factors such as obesity, high blood pressure, etc. (It will soon be replicated in the U.S. and several other nations as the POINTER study, with older adults having risk factors for dementia.)

Many people worry that genetic risk factors for dementia may thwart potential benefits from healthy lifestyle changes. We were very happy to see that this was not the case in our intervention, which was started early, before the onset of substantial cognitive impairment," says Adjunct Professor Alina Solomon, the lead author of the study.

https://www.sciencedaily.com/releases/2018/01/180125101309.htm

Here's the results of a population-based study in a large group of people near the Mayo Clinic in Minnesota, which has the advantage of following typical people who have no particular bias in being selected for a study or pursuing being in a study.

For APOE4 carriers with high lifetime intellectual enrichment (75th percentile of education/occupation score and midlife to late-life cognitive activity), the onset of cognitive impairment was approximately 8.7 years later compared with low lifetime intellectual enrichment (25th percentile of education/occupation score and mid/late-life cognitive activity

Association of lifetime intellectual enrichment with cognitive decline in the older population.
https://www.ncbi.nlm.nih.gov/pubmed/25054282

Anecdotal evidence: My dad was at least an apoE 3/4 and died of heart disease at age 67. His father died of stomach cancer at age 48. Yet no one in our family has had early cancer, and my cardiac age on a coronary calcium scan is 39 years, with zero calcium plaque. He had diabetes, I don't; but something else must be protecting me and my 3 siblings from any sign of cardiac disease, a known ApoE 4/4 risk. My mother was also at least an Apoe 3/4, and had lifetime low thyroid (as did several of her sisters). She managed to have 4 children in 5 years and lived to the age of 86. She died from congestive heart failure, and also had moderate dementia, but it only became evident after she had a serious case of campylobacter at the age of 80. She also had uncontrolled high blood pressure and atrial fibrillation.

Sleeping well and being a lifelong learner are two of the strongest associations with helping your brain to be both resistant to the effects of ApoE 4 and resilient through compensations for any changes that may happen. Don't worry about losing your train of thought. That is simply a function of frontal lobe attention and working memory, both of which are highly affected by stress and emotions. Just imagine trying to give a speech in front of Parliament while they are shouting questions and you can imagine the effects of both stress and emotions on anyone's attention, with no credit to ApoE 4!

The science of both lifestyle interventions and probable preventative drug therapy is moving fast, and you are certainly young enough to make the most of it in the future. I guarantee that after the rollercoaster of emotions calms down, you will feel more like yourself again. And as someone who also struggled for a while to have a baby, and had a miscarriage with our first pregnancy, I'm sending hugs to you and your husband and wishes that you both are soon welcoming a child into your lives.

So my dear Priya, please look forward to a long and happy life.

[KellyS]

I think I'm going to adopt NF52 as my mom, too. =).
I don't know about anyone else, but the encouragement she gives makes me feel like I could go bench press my truck.

Kelly

[Priya]

NF52 thank you, I am so thankful you took the time to write all that for me. It really does help.

I have been up every few hours tonight crying with worry. I’m usually so upbeat and positive, I feel like I have had a lucky and blessed life. But finding out I have all these things wrong with me like the under active thyroid and two copies of e4 has just brought me to my knees and made me worry about my mortality for the first time ever. It’s filled me with such dark thoughts and anxiety that I cannot seem to shake off. I want to reassure myself but honestly, I wish I didn’t know.

[Priya]

Hey should I be putting my results into Prometheus? I keep reading about protective genes?

[NF52]

Dear Priya,
I have had many nights when I wished I didn’t know. But I have come to have more nights and days when I am glad that I know. Here is why I think you will also:
Our brains are wired to adapt and be resilient to even terrible stress and injury. I spent more than 5 years working with children and families affected by traumatic brain injury (TBI), many of them severe. And during that time I also met researchers into what happens during a TBI and how to help people. What I learned is that the vast majority of the dozens of families I met gradually went from being “a TBI family”, in which the brain-injured child was the center of every day, to “a family with a TBI”, in which the child was a child first, and the TBI was something the child and family had compensated for and had not been destroyed by.
You are facing a real risk, but it is most likely less than a 50% risk, given your education, your cognitive status, your occupation and social engagement, and especially your youth. My father died in 1986 because no one knew Type 2 diabetes was a risk for heart disease and especially for silent angina. No one knew that uncontrolled blood pressure and untreated depression was a risk for vascular dementia, which my mother almost certainly had. Today we know how to mange heart disease before it can cause early death. Many wise people believe we are within 5-10 years of knowing how to personalize prevention of dementia.
In the meantime, we can learn from the Stoics (not the image of guys who love pain, but the ancient Stoics) that we can not control the outcome of our journey, but we can attempt to be well-equipped for possible events and see the journey itself as an opportunity for great learning and deep pleasure in loving those who we meet along the way, and those who take the journey with us.
Don’t be afraid of being a burden to your husband. Your brain will figure out ways to both resist and be resilient—even if you’re not “perfect”. Thirty years from now I want you to tell yourself that April 2018 was the month you took the first steps to being the person who refuses to be afraid of life. After all, if I’m a 66 year old 4/4 who should have a failing brain and I can be an optimist, then you can hold onto that branch also.
And if it seems too hard now, give yourself permission to have some coaching yourself. We have wonderful interns on this site who have been where you are and are trained coaches, able to work off-line to support you.
Hugs Priya.

[NF52]

P.S. You can use Promethease. I discovered some supposedly protective genes, and was able to tell my son he probably hadn’t inherited my dad’s early baldness genes!
Just know that SNPs are not completely understood and sometimes you may be reading a report about what some guys in Denmark with that SNP showed.