Hi Everyone,
I've been looking around this amazing forum since I discovered my 4/4 status a few weeks ago. Like other newbies, I've experienced the feeling that I've grasped the basics only to read something new the next day that throws everything in doubt. Low fat, high carb? Low carb, high fat? Low carb, low fat? How do I get into ketosis without enough dietary fat? Supplements are the most confusing of all (lots of conflicting information doesn't help my natural inclination to avoid supplements and get all nutrients from a healthy diet).
Before I received my 23andme results, I would have described myself as a quite healthy almost 50-year-old female. Always eating well and being active, but not following any particular plan very strictly. Very good BMI (19), no major health issues. My cholesterol always looked good (below 200 total with a good HDL) until just a few years ago when it started creeping up for no apparent reason. Last year it was Total 234, HDL 79, LDL 140, Trig. 70. My fasting glucose was 102. My doctor is unconcerned (but, for now, she does not know of my 4/4 status). Looking through my livewello and promethease results and reading different parts of this forum leads me to think I might be someone who looks perfectly healthy but who is actually IR, with potentially major inflammation issues?
I've made a few immediate changes: no alcohol; cut way back on grains; no dairy; upped the dark leafy greens; increased moderate exercise, some intermittent fasting, etc. I typically eat meat and poultry just a few times a week. After reading something, somewhere, I've decided to cut out legumes for now. How will I get protein? I feel like I'm eliminating a lot of good foods! I have a high level of education but I do feel like I have a "fuzzy brain" sometimes.
I'm here now to jump in and say thank you, to the forum as a whole, for all the hard work you are doing. I have a lot to learn and very little to contribute at the moment. My husband knows my results and he is very supportive of any changes I want to make. I'm undecided on how/when to tell other family members. I am unsure about whether to tell my doctor about my genetic testing or not. It's clear from the discussion threads that many of you are navigating multiple issues. Any advice on finding an independent health professional willing to look at all my individual issues (there's lots going on in my results) to help me prioritize and give me guidance regarding supplements, diet, and further testing? I live near a large university research hospital but I can't decide if I want to go that way since it would involve everything going into my medical file. Am I being too paranoid?
Thanks for listening!
Penny
Another overwhelmed newbie
Re: Another overwhelmed newbie
Welcome, Penny! We were all overwhelmed newbies at one point with NO place to turn; hence the creation of this site. Good for you for reading and absorbing as much as you have. You are correct. There is still no clear consensus on our best path forward with diet and supplements, but I see much more evidence-based general agreement than ever before. We are slowly gaining ground. We try to examine all of the evidence to help us make better decisions.
You've learned of your status at a great time. Your fasting glucose is just starting to edge up. You are perfectly poised to tweak that and improve your good health even further. I love that you've already told you husband and have his support. As far as revealing your genetic status to health professionals goes, be careful. You may want to explore long term care insurance or life insurance (if you don't have that in place) before anything gets in your medical records. By law, you can never be denied healthcare based upon your genetic status, but your ability to get insurance could be affected.
I'm also a homozygote. I found out at the same age you did. I was initially devastated, but am now very grateful for the information. as you already know, first learning is the hardest. The uncertainty is very overwhelming. Focus on what we do know and feel free to ask specific questions. All will try to pitch in and help.
You've learned of your status at a great time. Your fasting glucose is just starting to edge up. You are perfectly poised to tweak that and improve your good health even further. I love that you've already told you husband and have his support. As far as revealing your genetic status to health professionals goes, be careful. You may want to explore long term care insurance or life insurance (if you don't have that in place) before anything gets in your medical records. By law, you can never be denied healthcare based upon your genetic status, but your ability to get insurance could be affected.
I'm also a homozygote. I found out at the same age you did. I was initially devastated, but am now very grateful for the information. as you already know, first learning is the hardest. The uncertainty is very overwhelming. Focus on what we do know and feel free to ask specific questions. All will try to pitch in and help.
Re: Another overwhelmed newbie
Glad you found us! We're happy to listen, and keep reading and asking questions.
Since your numbers are creeping up, maybe the first thing to do is to ask your doctor about getting some advanced lipids testing (like an NMR). Do you have family members with heart disease? If so, you could say, my numbers are creeping up and with a family history, a few extra tests seem prudent.
Some of us here can have very discordant results when looking at the advanced labs: total cholesterol might look okay, but LDL-P might be sky high or the particle sizes out of whack. The good news is that many of us have found we can make individual dietary changes to influence those numbers for better results. And that goes for blood sugar, too. If you read enough, you'll find our diets do vary widely, so the take-away is there are other genetic influencers for fat absorption and insulin resistance.
I'd echo Julie's advice on telling your doctor at the moment. I have a reasonably good functional medicine doctor who I'm not sure totally understands the implications of E4, so it seems I've been educating him.
If you were to get some out-of-whack lipid results, you could consider a cardiologist who understands ApoE4.
Since your numbers are creeping up, maybe the first thing to do is to ask your doctor about getting some advanced lipids testing (like an NMR). Do you have family members with heart disease? If so, you could say, my numbers are creeping up and with a family history, a few extra tests seem prudent.
Some of us here can have very discordant results when looking at the advanced labs: total cholesterol might look okay, but LDL-P might be sky high or the particle sizes out of whack. The good news is that many of us have found we can make individual dietary changes to influence those numbers for better results. And that goes for blood sugar, too. If you read enough, you'll find our diets do vary widely, so the take-away is there are other genetic influencers for fat absorption and insulin resistance.
I'd echo Julie's advice on telling your doctor at the moment. I have a reasonably good functional medicine doctor who I'm not sure totally understands the implications of E4, so it seems I've been educating him.
If you were to get some out-of-whack lipid results, you could consider a cardiologist who understands ApoE4.
Re: Another overwhelmed newbie
Welcome honey.
Firstly - don't panic
Secondly - don't panic.
There's a lot to think about before you talk to anyone except immediate family and of course, us.
I'm 4/4 too and was a mess when I found out just over a year ago and luckily didn't make any panicky decisions (except to buy a truckload of curcurmin lol). Take your time. You have years to decide what is the best path.
Firstly - don't panic
Secondly - don't panic.
There's a lot to think about before you talk to anyone except immediate family and of course, us.
I'm 4/4 too and was a mess when I found out just over a year ago and luckily didn't make any panicky decisions (except to buy a truckload of curcurmin lol). Take your time. You have years to decide what is the best path.
Re: Another overwhelmed newbie
Thank you for the warm responses and great advice. I really like the idea of advanced lipid testing based on family history heart issues, so I don't have to reveal my status too soon. Does testing for homocysteine levels make sense with that story too? My results show problems with absorbing B vitamins and folate. I've read some of the information about Bredesen's approach, but I can see that it's difficult to apply some of it without knowing more from blood tests.
This is an introduction thread so I'll stop with that for now -- I promise I'll look around for existing threads to ask specific questions! I'm eager to get to a point where I'm more confident that I'm on the right track dietwise. Second-guessing everything I eat is getting a little stressful. It sounds like everyone here is familiar with that issue! Truly, I am happy that I know about being 4/4 so I can have a chance to do something about it.
This is an introduction thread so I'll stop with that for now -- I promise I'll look around for existing threads to ask specific questions! I'm eager to get to a point where I'm more confident that I'm on the right track dietwise. Second-guessing everything I eat is getting a little stressful. It sounds like everyone here is familiar with that issue! Truly, I am happy that I know about being 4/4 so I can have a chance to do something about it.
Re: Another overwhelmed newbie
Some of us try to tweak homocysteine but it's not top of the list IMO.
Are you looking at other strategies like exercise, sleep, building cognitive reserve, reducing stress?
I found keeping a wide view helped me not obsess over every mouthful of food.
Are you looking at other strategies like exercise, sleep, building cognitive reserve, reducing stress?
I found keeping a wide view helped me not obsess over every mouthful of food.
Re: Another overwhelmed newbie
Thanks Stavia! Yes, I'm working on sleep, exercise, and cognitive reserve. For stress, I'm trying out some yoga and listening to music more. Just imagining the beach you're sitting on in your picture reduces my level of stress! I'll try to find a calm scene to attach to my profile too.
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Gilgamesh
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Re: Another overwhelmed newbie
Welcome, Penny,
I read your intro and thought "ditto, ditto, ditto," the whole way through -- the curiously sudden ~half-century-mark health changes, and the dietary changes those, and the knowledge of one's APOE status, provoked, and the conundrum(s) with which one is left ("What the heck can I now eat?!"). It gets easier, but most of us continue to search for the right answers.
Be sure to look at Stavia's excellent intro posts here:
https://www.apoe4.info/forums/viewtopic.php?f=2&t=557
About telling your physician: tricky. I've started telling doctors while asking them not to note it in my file unless it's important that it be noted, and, in that case, to write it up as "family history of Alz.," without any mention of APOE.
GB
I read your intro and thought "ditto, ditto, ditto," the whole way through -- the curiously sudden ~half-century-mark health changes, and the dietary changes those, and the knowledge of one's APOE status, provoked, and the conundrum(s) with which one is left ("What the heck can I now eat?!"). It gets easier, but most of us continue to search for the right answers.
Be sure to look at Stavia's excellent intro posts here:
https://www.apoe4.info/forums/viewtopic.php?f=2&t=557
About telling your physician: tricky. I've started telling doctors while asking them not to note it in my file unless it's important that it be noted, and, in that case, to write it up as "family history of Alz.," without any mention of APOE.
GB
Re: Another overwhelmed newbie
Thanks Gilgamesh! I've been playing around on cron-o-meter to start tracking my diet. Still not sure what ratios of protein to carbs to fat I should be looking for, but I will try to go with how I feel as much as I go with what I read. Exercising every day helps with stress.
I'm glad to have found this forum. You are a very supportive group!
I'm glad to have found this forum. You are a very supportive group!
Re: Another overwhelmed newbie
Hey Penny! I agree with Stavia that homocysteine probably shouldn't be your first target, BUT given your issues with B vitamins it seems to make sense to get a baseline. A large body of work demonstrates a correlation with elevated homocysteine and hippocampal shrinkage and CAD. Many of us are shooting for levels around 7-8 µmol/L.I really like the idea of advanced lipid testing based on family history heart issues, so I don't have to reveal my status too soon. Does testing for homocysteine levels make sense with that story too? My results show problems with absorbing B vitamins and folate. I've read some of the information about Bredesen's approach, but I can see that it's difficult to apply some of it without knowing more from blood tests.
