Age 36 and terrified of being 4x4

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Anna
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Re: Age 36 and terrified of being 4x4

Postby Anna » Sun Apr 22, 2018 11:22 pm

Priya wrote: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?! . . . I’m usually very upbeat but this has floored me.
Priya, it may not seem like it now, but this sense of doom you are feeling will lessen with time. I was shaken to the core when I ran my 23andMe data through Promethease and saw my 4/4 result. Like you, I knew there was AD in the family and was not surprised to see that I have genetic risk, but I had never heard of ApoE and didn't expect what I encountered. It didn't help that the statistics provided by Promethease were alarming, to say the least (They need to update their info IMO!). I felt like someone had hit the fast-forward button on my life. I was terrified! But I was promised, in responses to my "Processing Promethease" post, that things would get better. Guess what! They did! Although I still have negative moments where I feel like I'm under a dark cloud, I'm mostly just living my life with an added appreciation for each day. Hopelessness has slowly been replaced by perspective, empowerment, and fascination.

You asked about running your data through Promethease. This can be pretty overwhelming if you aren't emotionally prepared for it. Promethease lists the highest magnitude items first, which can be alarming. There are many genetic variants that contribute to AD. In fact, almost any health condition is a potential contributor, so if your mindset is not right, Promethease could potentially leave you feeling like your genes have created the perfect storm. There is no rush; take all of this at your own pace. And focus on the things you can control. I found that taking small steps each day to protect my brain really helped me to cope.

I also struggle with an underactive thyroid (Hashimotos -- although antibodies are now negative) and am a huge fan of Izabella Wentz. I wish there were someone like her when I was diagnosed about 30 years ago. The good news is that all of the root-cause steps she suggests will protect your brain and your future children. I know Dr. Wentz advises working with a functional medicine doctor, if possible, to address the root causes of your Hashimotos, ideally before getting pregnant. I started working with an FM doc soon after learning my 4/4 status. I think this has been the most important step I have taken.
~Anna
4/4 but so much more

Priya
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Re: Age 36 and terrified of being 4x4

Postby Priya » Sun Apr 22, 2018 11:44 pm

NF52 - thank you, your kindness has helped me through one of the worst nights of my life.

Some support from an intern sounds amazing, I found the application form and filled it in.
Last edited by Priya on Mon Apr 23, 2018 12:38 am, edited 1 time in total.
4x4 and Hashi - Currently anxious but searching for calm

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Re: Age 36 and terrified of being 4x4

Postby Priya » Mon Apr 23, 2018 12:37 am

NF52 wrote:Dear Priya,
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.


What I read about 4x4 made it sound like an 80% chance :o
4x4 and Hashi - Currently anxious but searching for calm

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Re: Age 36 and terrified of being 4x4

Postby Priya » Mon Apr 23, 2018 12:40 am

I’m wondering if it’s worth checking on Prometheus to see if I have any helpful genes ?
4x4 and Hashi - Currently anxious but searching for calm

Fiver
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Re: Age 36 and terrified of being 4x4

Postby Fiver » Mon Apr 23, 2018 7:31 am

Hi Priya. You're feelings are totally normal. Over time the shock wears off some.

I couldn't say anything better than NF52 did. In fact I'm going to bookmark this thread so I can re-read what she wrote from time to time.

Keep in mind that those risks describe past populations - including those with less knowledge about healthy diets and lifestyles than we have now. By being informed and taking an active role in our health we can do better. Education and continued learning, improved health, a better diet - those things are all likely to reduce the risk and / or push the risks off to a later age. Let's say the risk was ~50% by age 85, in those past studies. With basic healthy lifestyle interventions we understand now maybe you push that off 5-10 years. That's pretty good.

All of this is just playing with numbers we don't full understand, of course. But there are an increasing number of large, solid studies showing that healthy lifestyle interventions work. Plus, they have a whole bunch of other benefits - most of them lower risks of heart disease, cancers, depression, diabetes, etc.

And since you are 36 years old, you have time on your side too. In 30 years, for example, a lot will change. For one thing, the gene editing technology that is now new will probably be a standard intervention. Imagine, one day a E4/E4 will become an E3/E3 or even an E2/E2. A recent study showed that this could be done in brain cells in a culture dish, and when they were edited from E4 to E3 the cell rapidly reorganized themselves into better functioning "petri dish brains". Think back 30 years when we had virtually nothing to treat many cancers and HIV/AIDS. Now we do. Cardiologists used to use mortality as an endpoint for all of their studies, and now they generally don't in large part because not enough of their patients die - thank to statins and better diets - to make the statistics work in their studies. Right now, we're not there for dementia. But you have time working for you. Meanwhile we have to take what measures we can (and there are some!), support the research that moves us towards better treatments, be brave and live good, happy lives.

NF52 said "Many wise people believe we are within 5-10 years of knowing how to personalize prevention of dementia." What a great thing to remember. I feel like I want post that all around my house.

If I could offer any advice about that it would be: don't do it alone, involve your loved ones if appropriate; learn more, do more, worry less; and find some meaning in it - join a study, raise funds for research, pass along what you learn here, etc.

If you have moments where you freak out, that's normal. If it helps, look around and remember that about one in four people you see carries a E4 gene. You're not alone. And something so common will continue to get lots of attention from researchers.

Meanwhile, give yourself permission to have all of those normal feelings.


NF52 - thanks. I needed that today too.
Concerned, but hopeful. Introverted, but will talk about science.

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Re: Age 36 and terrified of being 4x4

Postby Priya » Mon Apr 23, 2018 1:52 pm

I reached out to an Alzheimer’s Prevention community on Facebook and they send me this. It was so helpful to how I have felt over the past 48 hours that I wanted to share with you all too....


Priya, the excellent news is that you are young. There are many advancements being made in this field. Right now there are three ongoing trials: the A4 Study (https://a4study.org/), DIAN (https://dian.wustl.edu/) and the Banner APOE4 Prevention Trial (https://www.alzforum.org/news/conferenc ... tion-trial) The A4 trial enrolled participants who meet a threshold of amyloid in their brains and are asymptomatic. DIAN is testing a drug in people who carry a frank mutation for Alzheimer's. And Banner is testing a drug in people with one or two copies of APOE4. All of the drugs are monoclonal antibody 'vaccines' directed against amyloid. It is likely that one or more of these approaches will work and will be available to the public in the next 10 years.

Another possibility is the development of drugs that block the production of amyloid. There are at least two different pathways that are being researched right now.

The most available approach today is a combination of physical and mental exercise, which appears to delay the manifestations of dementia in those carrying brain lesions for the disease. We have known for some time that just having the brain pathology is not sufficient to cause dementia. About one-third of individuals with severe Alzheimer brain pathology at autopsy are not demented during life. We suspect this is due to brain growth and reserve, that can be influenced by physical and mental exercise.

Is your hypothyroid condition being treated? If so, it should lead to weight loss, which will benefit your brain as well.

With regard to having children, we don't think you should worry because by the time you OR your kids are at the age of risk, it should be possible to prevent Alzheimer's disease altogether. You have time on your side.

We published a book in 2016 about preventing the disease with lifestyle modifications. It is an academic book and may be hard to read, but you can peruse it online and see if it might help. https://www.amazon.com/Alzheimers-Disea ... 0128045388

Let us know if you have any other questions or just want to vent some more!
4x4 and Hashi - Currently anxious but searching for calm

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Re: Age 36 and terrified of being 4x4

Postby Priya » Mon Apr 23, 2018 1:57 pm

Anna wrote:
You asked about running your data through Promethease. This can be pretty overwhelming if you aren't emotionally prepared for it. Promethease lists the highest magnitude items first, which can be alarming. There are many genetic variants that contribute to AD. In fact, almost any health condition is a potential contributor, so if your mindset is not right, Promethease could potentially leave you feeling like your genes have created the perfect storm. There is no rush; take all of this at your own pace. And focus

I also struggle with an underactive thyroid (Hashimotos -- although antibodies are now negative) and am a huge fan of Izabella Wentz. I wish there were someone like her when I was diagnosed about 30 years ago. The good news is that all of the root-cause steps she suggests will protect your brain and your future children. I know Dr. Wentz advises working with a functional medicine doctor, if possible, to address the root causes of your Hashimotos, ideally before getting pregnant. I started working with an FM doc soon after learning my 4/4 status. I think this has been the most important step I have taken.



Thank you, I’m sorry you share my experience but glad to know I am not alone. It really helps. I also have hashimotos. My antibodies are good but TSH s little high so taking Levo. Ref Promethease I think you are right, I’m not ready and when I am I don’t think I can do it alone. I have applied for coaching from this site and will try and find a functional Dr who can help me in the UK. Whatever happens, I could not have got through the last 48 hours without this forum. It’s been a place of kindness and safety. I hope I pay it forward one day
4x4 and Hashi - Currently anxious but searching for calm

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Re: Age 36 and terrified of being 4x4

Postby Priya » Mon Apr 23, 2018 2:04 pm

Tom wrote:NF52 said "Many wise people believe we are within 5-10 years of knowing how to personalize prevention of dementia." What a great thing to remember. I feel like I want post that all around my house.

If I could offer any advice about that it would be: don't do it alone, involve your loved ones if appropriate; learn more, do more, worry less; and find some meaning in it - join a study, raise funds for research, pass along what you learn here, etc.

If you have moments where you freak out, that's normal. If it helps, look around and remember that about one in four people you see carries a E4 gene. You're not alone. And something so common will continue to get lots of attention from researchers.

Meanwhile, give yourself permission to have all of those normal feelings.



Thank you so much, I really appreciate the advice. Through the crying and worrying of the past 48 hours I think one truth has emerged. Ignorance was bliss...and also a form of denial. I was doing bits of exercise and taking supplements but not really with the rigor I needed to if I want a long and healthy life which of course I do. Finding out about my genes was a big wake up call and forced me out of the comforting bliss of denial. It shook me and it hurt, a lot. My fear comes from not knowing if I can do it, being scared about my future which previously I had always assumed would be rosy and also fear of never feeling carefree again. I have been terrified for 48hours and now I just feel exhausted.
4x4 and Hashi - Currently anxious but searching for calm

Starfish77
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Re: Age 36 and terrified of being 4x4

Postby Starfish77 » Mon Apr 23, 2018 3:13 pm

Dear Priya,
I see you have been quickly adopted into our Apoe4 family and even have a virtual mom. I see that leaves room for a virtual grandmom. I hereby apply for the job. I'm doing fine. I'm sure much of the "fine" part comes from things I've learned from this site.
Starfish e4/e4 age 81

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Re: Age 36 and terrified of being 4x4

Postby Priya » Mon Apr 23, 2018 4:44 pm

Starfish77 wrote:Dear Priya,
I see you have been quickly adopted into our Apoe4 family and even have a virtual mom. I see that leaves room for a virtual grandmom. I hereby apply for the job. I'm doing fine. I'm sure much of the "fine" part comes from things I've learned from this site.
Starfish e4/e4 age 81


Hey virtual gran how are you? How come everyone on here is so nice? It’s lovely

When did you find out you had e4e4?
4x4 and Hashi - Currently anxious but searching for calm


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