New Here

[GemmaJ]

Hello Everyone,

I'm not sure how this works and I'm really not sure where to start. I'm also a bit worried I might have broken a rule and put this in the wrong place - If so, I'm sorry - I'm completely new to any kind of forum.

I found out two weeks ago that I am an APOE 4/4 carrier. I deliberately sent off my saliva sample at my sister's suggestion as she had recently done a DNA test for dietary reasons and had discovered that she was APOE 4/3. Our mother is 69 and very quickly descended in AD over the last few years ...but that's another story. So it was really to keep her company that I had the test done. I definitely expected to be 4/3 like my sister as my Dad is 80, fit as a fiddle and with a brain in full working order. We assumed he wasn't an APOE 4 carrier. Turns out we were wrong.

Initially I found the news really hard to take. I'm an English teacher (British national who now works in a British School in Spain) and I stupidly opened the report in school. I wasn't interested in any of the other genes, I just scrolled down until I saw the red alert and APOE 4/4. I was reeling as I had read a lot up beforehand on the APOE 4 allele and knew what this meant and obviously had my mum right there in my head.

I don't know what else to say at this point except that the last few weeks have been a minefield as I try and negotiate all the information and advice out there. Ironically, I think the fact I have been an on/off Anorexic throughout my life may have actually helped me as I'm an extremely healthy eater with refined carbs and sugar being my fear food! I have an appointment tomorrow with the dentist to discuss the extraction of the 2-4 (I honestly don't actually know how many!) amalgam fillings I have, one being a huge molar which must provide enough mercury to poison a lake!, I started a low toxin diet nearly three weeks ago and am keen to keep eating the right foods. Currently I run for about an hour a week in total and I walk everyday for at least 1/2 hour but I'm aware that I need to increase that.

I'm finding it hard to decide how to 'play' the rest of my life. Be really strict and never eat anything sweet or drink a drop of wine again etc and live alzheimers free forever more or let myself have something now and again and enjoy life a bit more even if it means developing dementia....it's so hard to call.

There's so much more I should add - I have a very low BMI indeed (about 16-17 at the moment) - does that put me at risk? My total cholesterol is on borderline high but about 7/10ths of it is HDL so what does that mean for me? ....There's just too much to think about!

I'm so glad to have stumbled upon this page. If anybody who is also APOE 4/4 can offer me how to get over this first stage of 'knowing' I would be so grateful. One of the hardest things for me is knowing that my two kids, aged 10 and 12, definitely have at least one copy of APOE 4 - I almost feel guilty....

Anyway, thanks for letting me ramble on (if you've lasted this long!)

[Lucy5]

Hi Gemma and welcome. You did not break any rules and actually found the perfect place to post your intro! I'm so glad you found our site and shared your story with us.

I'm a 4/4 also, now in my mid 60's and doing well. There are a number of other ApoE4/4s here who are older (70's+) and remain active and healthy, giving us all hope! Please remember that the 4 allele is a risk factor for AD and no guarantee that we will develop this disease. I discovered my status accidentally thru a routine blood test about 5 years ago, and remember so well the shock as it slowly dawned on me what it meant. I was devastated and totally understand what you've been going thru. I have to say this site was a lifeline for me. What I and many others here have found, is that over time the knowledge gets much easier to deal with; kind of like a new "normal" for you. Plus, the realization that there appears to be much we can do to help ourselves stay healthy and that there are many 4/4s out there who live into old age dementia-free definitely helps.

For starters, I'd like to suggest that you begin by diving into our site primer at viewtopic.php?f=33&t=1418, which will provide you with the answers to many of your questions. In my opinion, it's the best source you will find in one place regarding ApoE4 and what it means for our overall health. It was written by our member doctor and includes lots of advice based on the most current information available regarding what we can all do to give ourselves the best chance to delay/prevent AD. Please take your time going thru it and pay special attention to the suggested Blood tests to guide you along the way as well as priorities for lifestyle changes. My personal opinion is that making too many lifestyle changes at once is very hard to sustain.

Good for you that you've avoided sugar and refined carbs all you life and that you have an exercise program in place! Regarding your great question about how to "play" the rest of your life, I'm pretty sure we've all been there and the answer to THAT one is as varied as our group and probably changes over time for many of us. It has for me, at least. My opinion now is that we're not so fragile that we can't make the occasional exception and have that piece of Birthday cake or glass of wine. That's the way I choose to live my life.

As you plow thru our Primer and have more questions, please join us on the Forums and ask away! I'm sure others will be jumping in to welcome you to our group soon...and again, Welcome!

[Stavia]

Welcome honey. It's very hard right now but I promise it will get easier.
Promise.


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[TheresaB]

Gemmaj,

Welcome. You are not alone. I learned I am 4/4 about 3 years ago. I’m not happy about it, but in the grand scheme of things, there are far worse things in life I could have inherited. I’m grateful I learned early enough to do something. If your mom is 69, you are younger than me, so you have an even greater head start. It’s an opportunity.

I don't know what else to say at this point except that the last few weeks have been a minefield as I try and negotiate all the information and advice out there.

Well, yes, all the information out there is overwhelming and sometimes contradictory. That’s why the primer provided on this website is so good. If you haven’t done so, read it!

Regarding some of your concerns:
Low BMI? Hard to say, BMI is only an indicator, a person can have a low BMI and still be insulin resistant or have inflammation issues going on inside the body. Low BMI is a good indication, but not a sure thing.

Cholesterol? It is overemphasized IMO. Perhaps ApoE4s tend to focus on it so much because we tend to have wonky numbers. I know I’m a hyperproducer and hyperabsorber, and have always had high total cholesterol (still do), so it’s hard to compare myself to “normal” people. That’s not to say I haven’t worked on getting certain cholesterol numbers in line, which I’ve done, but in my personal set of priorities, cholesterol comes after optimizing insulin sensitivity and keeping inflammation markers down.

Eating “right foods.” Just remember, everybody has a different opinion on what constitutes “right” or “healthy” foods. Keep reading and following these forums and you’ll hopefully determine what is right for you.

I'm finding it hard to decide how to 'play' the rest of my life. Be really strict and never eat anything sweet or drink a drop of wine again etc and live alzheimers free forever more or let myself have something now and again and enjoy life a bit more even if it means developing dementia....it's so hard to call.

Since learning I’m a 4/4, I’ve become pretty strict about diet and lifestyle choices, but I still enjoy life! I don’t eat the same as I did, but I do eat well. I still have wine (in moderation) and on rare, special occasions I allow myself a cheat off the diet. But I’m fortunate, despite the “sins” of my past, it appears I didn’t overly damage my body. Since learning my 4/4 status I’ve followed a specific diet and added certain supplements, so my biomarkers are at a point that I can indulge in a cheat once every few months or so. Unfortunately, what is allowed for one person may not work for another, so I don't know about you. I know that with his biomarkers/body responses, my husband, a 3/4, has to be stricter than me in many ways.

But one thing that is certain, as a 4/4, we have an unforgiving gene. It does not mean we will all ultimately get Alzheimer's or Cardiovascular disease, but the risk IS real. For good health, we have to be strict about diet and lifestyle. But it isn't necessarily a constant drudgery either, we can still enjoy life while taking care of ourselves.

[GemmaJ]

Thank you so much everyone for being so welcoming. I feel better just reading your reassuring words.

I'm 44 years old - I'm not sure why I didn't mention that before and now realise what an ironic age it is to find out you're APOE 4/4!

I have started on the Primer which is brilliant - so informative - and will keep going through. As well as a dentist appointment this evening to try to rid myself of amalgam, I have also made a doctor's appointment this week to request a blood test. I see there's quite a few things I need to get checked - Does anyone have a succinct list of the main things I need to know? Theresa - I know I'm naive but what do you mean by knowing my 'biomarkers'? My DNA test was comprehensive and tested me for everything so I have a whole list of my alleles - is this what you mean?

I will definitely be using this site and all the forums as much as I can. I work full time in a secondary school so don't have loads of time but will certainly be here as much as I can for a while whilst I learn from you all.

THANK YOU so much for providing this lifeline. And thank you all for being so welcoming.

Gemma

[TheresaB]

Theresa - I know I'm naive but what do you mean by knowing my 'biomarkers'?

According to Wikipedia, a biomarker is a measurable indicator of some biological state or condition. So it can be as simple as what your tape measure says your waist measurement is to determine your likelihood of having Insulin Resistance (IR).

But generally when we talk about our biomarkers, we’re referring to the results of our blood tests.

I thought I was doing pretty good and generally eating healthy until I got my first comprehensive blood test after learning my 4/4 status. I discovered some areas in need of improvement. Having blood tests every 6 months has given me regular feedback to let me know if I’m on the right path or not. These measurements have helped me decide which areas to focus on and have been a regular “pat on the back” letting me know I’m going good with my choices and to keep up the good work.

The primer talks about biomarkers:

a. HbA1c, fasting insulin, fasting glucose, 1 and 2 hour after eating ("post prandial") blood glucose
b. Lipids - both basic (TC HDL LDL TG's) and advanced (LDL-p or apolipoprotein b)
c. Vitamin B12
d. Vitamin D3
e. TSH, T3, T4 (thyroid function)
f. Liver functions
g. Homocysteine
h. CRP (inflammation) (to define values under 1, a "high sensitivity" assay is used
i. Full blood count (FBC) also called complete blood count (CBC) in the USA, measures the red cells, white cells and platelets in the blood.
j. Ferritin (measure of iron stores but also goes up in chronic inflammation)
k. Renal function is usually given as creatinine and electrolytes. In the USA it is still incorrectly called BUN (blood urea nitrogen) as years ago urea was measured instead of creatinine. Sometimes incorrectly it is still called u&e's by British/Europe docs because we also used to measure urea years ago. From the creatinine a measure of renal function can be estimated, called eGFR. It is inaccurate at extremes of body habitus. It overestimates renal function in small people and underestimates renal function in large muscular people. A more accurate measure is the GaultCockroft equation which requires more information.

Everyone has different medical coverage/doctors, but some of us go beyond those tests and, as you may have noticed in perusing the forum threads, folks test things such as ketones (the brain’s alternate source of energy after glucose), cortisol level (stress), hormone levels, IGF-1, IL-6, RBC EPA/DHA, oxLDL, CAC score and on and on. The alphabet soup can be mind boggling. Start with the basics, keep things simple at first, but keep learning, all those things are important.

Lastly, I say listen to your body. We disagree on “the best” way to eat, (although a Mediterranean Diet seems to be a good, general consensus starting point) but we all have different bodies. If your body feels better (less congestion, better sleep, less joint pain, reduced gastrointestinal issues, enhanced brain function, clearer skin, whatever it might be) that’s probably a good indicator that food choice is right for you.

[NF52]

Welcome, Gemma!
You already are showing one of the best strategies possible: a sense of humor and irony about finding out your 4/4 status when you are 44! I have a 4/4 birthday and always loved the symmetry of that--especially the year I turned 44 on 4/4. Like you, the irony of finding out I also am a 4/4 wasn't lost on me.

Also like you, I was once a high school English teacher and would rather face a class of 16 year olds than 6 year olds any day! You will come across the term "cognitive reserves" referring to the protective factor of having a university education, a challenging profession, and continued commitment to learning and problem-solving in a dynamic environment. Cognitive reserve has been estimated to add 8 years to the typical projection of onset of mild cognitive impairment (sorry, don't have the source at hand) and it's clearly evident in people are cognitively normal while having a similar level of amyloid as those with mild cognitive impairment in their 60's, 70's and 80's.

It's entirely possible that your unfortunate mother had multiple risk factors that you don't have. Her nutrition as a child in post-WWII Britain may have been very different than yours, and she may not have had the opportunities to have the strong education and career you've had. As someone just a few years younger than her, I can attest that doctors never tested for cholesterol, or used the term "insulin resistance" or "metabolic syndrome" when we were your age, nor did they worry about blood pressure that was higher than would be accepted as normal today.

Like everyone else here, I have found Stavia's primer both helpful and reassuring. I would advise you to be very wary of believing articles about APOE 4/4 that have claims about sky-high risk with no links to original sources. Most of the time, they are simply repeating "conventional wisdom" from articles published in the 1990's, when sampling of people with Alzheimer's and APOE 4 was less common and far less accurate.

Here's a quote from, and the link to a March 2017 meta-analysis (a statistical analysis of several studies on the same topic). The article notes that "population-based studies" that follow a diverse group of people for long periods of time (ex. Rotterdam Study,Framingham Study) show significantly lower life-time risks of Alzheimer's for those of us with APOE 4/4 than more narrowly targeted studies. By the way, in these studies with "life-time risk", it is often defined as risk to age 85, since in the U.S. that is about the current expected life span.

Lifetime risk was more consistent across the two samples in which it could be estimated, and did not vary as much with age, ranging from 31% to 40% for those with APOE-e4/e4.

http://journals.plos.org/plosmedicine/a ... ed.1002254

I personally believe that the basic science on APOE 4 will prove to be like the basic science on the HIV virus--a field that is posed to transform the understanding of multiple factors that lead to dementia, and then to have multiple interventions that can manage the risk for people like you, me , Stavia and the other folks here who are determined to live life fully.

[NF52]

Gemma,
Here's the link and quote that I mentioned in the previous post: "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)."
https://www.ncbi.nlm.nih.gov/pubmed/25054282

Cognitive reserve is not an easy biomarker to test; but is something we can maintain and expand throughout our lives!

[GemmaJ]

Oh my goodness - I feel awful as I hadn't relooked at my post for a while and wasn't sent any notification that such kind people had spent so long replying to reassure me! THANK YOU so much Stavia, TeresaB and NF52! I have printed off all documents to peruse when I have more time.

I have spent probably the last month reading through Stavia's excellent primer and making notes on it - I have learnt so much about genetics, cholesterol, insulin, cells, proteins, etc etc....I feel like I know myself so much better.

I am in awe of all of you who are so strict with your insulin and ketones and blood tests and supplements and exercise etc etc. I have always been very strict with myself, proven by my earlier battles with Anorexia. I am very good at cutting out food groups so the diet part hasn't scared me at all - for five weeks I have eaten nothing with any sugar in until this very morning when I treated myself to a dark chocolate covered corn cake with my cup of tea - I nearly gagged on it's sweetness!!! I won't say I didn't enjoy it though. I have upped my running regime to 3 45 - 1 hour runs a week. I live in Spain and the temperatures are 29C and rising at the moment so this is getting harder! I'm desperate to join a gym but just can't afford it at the moment so will have to do my best with swimming and running.

I work full time and have two children, aged 12 and 10, and this has influenced how I have approached my APOE4/4 news. I can only do my best amongst my hectic lifestyle for now.....I hope as I get older I will have much more time for more exercise, at the moment it's difficult to fit loads more in. So for now, this is how I am trying to support my genetic makeup:

- my biomarkers (the ones I can see from a blood test in March) are all good. My HDL has always been really high (138 last time) and my LDL low (I think under 70 but I don't have results to hand at this mo)
- I am 5 foot 51/2 inches tall with a waist circumference of 24 inches
- I have followed a low toxin, no sugar diet for last 5 weeks. Unfortunately this has meant that I have lost even more weight when I was underweight already. I'm afraid in my European way I use kg! I have gone from 47kg down to 44kg, making my BMI very low - this worries me. I eat TONNES of nuts (always have) and avocados are my absolute favourite food in the world but HOW can I put the weight back on without eating grains? I'm just not sure....
- I fast from supper to breakfast, 13-14 hours at the moment but no more - it's just too hard with work timetable etc.
- I have started different supplements gradually, at the moment I have started NAC, Krill Oil, probiotics, curcumin (I already take Calcium and Vit D, as well as oestrogen for osteoporosis - my own stupid anorexic fault - and am having this reviewed next week as my genetic test showed I have an inability to absorb calcium carbonate and an intolerance to oestrogen...another problem with regards to HRT etc....) and am going to add in alpha-lipoic acid, l-acetyl-carnitine amd maybe 'methyl guard' and cocoavia over the next few weeks....
- I used to enjoy a glass of wine a couple of times a week and am confused by the confusing reports I read about 4/4 and alcohol so have decided from now on one glass of dry white wine (less sugar than red...) a week as a treat with a meal.
- I have restarted learning italian and have also restarted writing summaries of long linguistic articles for an online digest to try and boost my cognitive reserve.
- I have had one huge amalgam filling removed and have a tiny one that would involve destroying two teeth if it was removed left. I take Algin to compensate for this.
- I hardly ever eat meat (never really have) and eat lots of oily fish - I try my best to go for low mercury levels..

I'm not sure if it's enough - I found the working out grams of protein etc just too much at the moment but one day, WILL move on to pricking my fingers and calculating food ratios etc this once my kids are a bit more grown up to deal with it! I try to stick to Stavia's advice of 20% protein but need to educate myself better in the food groups really...Good! More cognitive reserve! I can't give up my porridge with almond milk, chia and flaxseeds, nuts and blueberries every morning but have moved to using gluten free oats...tbh I'm not sure if the gluten makes a difference - I read somewhere it was a toxin so though gluten-free may be a better option...? Any advice welcome.

I can't thank you enough for all your support - this website has been invaluable, if scary at times! I hope I'm doing enough for now - time and money are constraints more than anything else!

You're all brilliant thank you!

Oh - anyone know how I can get alerts to say when somebody has replied? I feel so terrible that I didn't realise you'd all been helping me and I didn't reply for weeks!

Gemma

[SusanJ]

Gemma, know that you are doing so many positive things to help your health. We always advise that you need to do what's sustainable for you. With 2 kids and a busy schedule, I'm impressed that you are able to do as much as you are! Keep up the good fight.