Just discovered I'm 4/4, rocked.

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Trevor
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Re: Just discovered I'm 4/4, rocked.

Postby Trevor » Sun Feb 02, 2020 11:19 pm

Slacker: Thanks so much for spending the time to make such a detailed reply, almost makes me feel guilty! I won't know until I see the doctor but I suspect you're right about the problems I'll have getting tests ordered in Canada versus the US. I have a fear/feeling that doctors will just say "You're worried about Alzheimer's at 35? I'm not ordering all these tests."

You've got pretty wise words about getting further testing. While Alzheimer's runs in my family on my mother's side, I don't think early onset does, as neither my grandmother or great grandma suffered noticeably until they were firmly into their senior years and even my Mom is 64 and not showing any signs. Then again, I never would've predicted I'd be a 4/4, given that my Dad's side of the family has no real history of AD. I guess I'm feeling that push/pull of wanting to know, even if knowing could potentially frighten me more. It's like how I feel about learning I'm APOE 4/4.

daydreams: Thanks for the pep talk. I'm probably on the gloomier/worrier side of things, but I try to push back on it.As a 3/4 that's seven years younger than me, you probably have more time to hope than I do, as I know it's possible for signs of AD to hit 4/4s as early as their 40s, which terrifies me. I think in general with 3/4s, at least from my reading (Which could be wrong), you likely have a longer runway there. I'm going to try and enact a lot of positive life changes like you did, I hope I get the same boosts in feeling as you, that sounds great.

Fiver: Thanks, hope you're doing okay. It's pretty great that you've all built this community for each other.

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Re: Just discovered I'm 4/4, rocked.

Postby floramaria » Sun Feb 02, 2020 11:59 pm

Hi Trevor, I want to add my welcome and also reassure you that it is EXTREMELY unlikely that you could have the genetics for early onset AD in your family and not know about it. Where ApoE4 correlates with an increased predisposition to late onset AD, the genes that are related to EOAD are often referred to as deterministic since the percentage of carriers who develop EOAD is in the upper 90’s. It would surely have shown up in your family.

So that is one test you can cross off your list!
when you read the Primer, which I highly recommend, you will see that Stavia has a list of tests which is shorter than Dr Bredesen’s full cognoscopy, if you get all the physical measurements and biomarkers in Stavia’s list within healthy ranges, you’ll be a long ways towards improving the chances that you will live a long and healthy life, with cognition intact. Most if not all of those tests would be part of a routine physical and your doctor might not balk at ordering them. In my opinion, that would be a good starting point especially for someone who is young.
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Re: Just discovered I'm 4/4, rocked.

Postby slacker » Mon Feb 03, 2020 5:07 am

Trevor wrote:Slacker: Thanks so much for spending the time to make such a detailed reply, almost makes me feel guilty!


Uh, guilt is optional, and not recommended! We are here to help each other. I have received so much support from others on this website and am happy to pay it forward.

I finally found the short list of Stavia's lab suggestions in the Primer (which Floramaria suggested and I also support). This might be a reasonable request for anyone to make for an annual exam, regardless of concern about dementia. Maybe with the exception of the post prandial glucose measurements. You could request it for a general health check. I recently had most of these ordered by my primary care at my annual "wellness" check without me requesting anything; however I am barrelling towards age 60! (when did that happen?)
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Re: Just discovered I'm 4/4, rocked.

Postby anotherdreamer » Mon Feb 03, 2020 7:34 pm

I'm new to this site as well and also pretty green to the research, but there are some things I've learned that I'm hoping might help you. You said your father's side hasn't show any signs of AD. It is possible that his side has some protective genes. There is one gene CETP rs5882 (g/g allele is best) that is able to modify the risk of apoe4. I've been studying this quite a bit. I'd check to see if you have that.
Nir Barzilia is a longevity doctor who has mentioned CETP. He did an interview with Peter Attia (you can find on youtube) where he mentions that he has super centenarians in his study with 4/4 with the CETP gene. I'm sure that's not the only one either. I think there are probably thousands of polymorphisms that offset the risk that we don't know about yet.

Dr. Bredesen has an interview with Rhonda Patrick (youtube again) where he says he believes with a good diet and exercise, AD is a completely avoidable disease. My point is, it's not clear cut by any stretch. You found out very young, which is a great thing. You can make healthy choices now. From reading this board, there are a lot of 4/4 people on here who are thriving at older ages. Plus, time is on your side. Ten years ago, people barely knew about the genome. Now look at where we are? You've got decades for there to be a cure. I mean think about it, thirty years ago, we didn't have cell phones. I'm not sure we even had cordless phones. You had ten stations on TV. I know that's not medical but technology is medical at this point in time. In another thirty years, there's going to be a lot of advances.

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Re: Just discovered I'm 4/4, rocked.

Postby Trevor » Mon Feb 03, 2020 11:41 pm

floramaria: Thanks for helping me to check one off my list! I don't think I have early-onset Alzheimer's on my Mom's side of the family and I don't think I have much or any Alzheimer's on my Dad's side (Which makes me 4/4 way more shocking), so hopefully I'm good there. It's weird though because I saw at least one study that says for 4/4s it's not uncommon for them to start showing beginning symptoms as soon as their 40s, which sounds early to me. Then again, maybe it was just one study and maybe it would seem less early if I was 25 and not 35.

Also, that primer list is great.

slacker: Thanks for the link to the list of tests that floramaria also mentioned. I was working my way through the whole thing but that's a handy link to get right to the list, which I hadn't gotten to yet. I see my doctor in a week and I agree, most of these tests seem like pretty basic things a doctor should not have a problem approving. The Bredesen Protocol has so many factors so it's nice to have something a little more basic to start with, plus seeing as how I plan on making drastic changes to my diet/lifestyle, it'll be nice to have a lot of baseline numbers right before I start to see how effects my changes have. Maybe I'll try to keep track of them here, report how the changes make me feel.

PS. I'm a Canadian but one of my closest friends is in Kentucky, so I always get a little kick when I see your location when I look through posts.

anotherdreamer: Unfortunately I did some rooting through my 23andMe data for that gene and I think I got the bad end of that too.

Thanks for the links. I'm about two thirds through Bredesen's book actually and I'll probably have more to say when I'm done. There's a lot of things in it that make sense that I'm going to incorporate into my life, but I also always try to look at the critics of everything I read and there's a couple comments I've seen that give me a little pause, but again, I'm not done the book yet so I shouldn't really comment. If nothing else, most of the things he suggests aren't going to hurt you, and should likely have health benefits even if they don't outright prevent/reverse Alzheimer's.

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Re: Just discovered I'm 4/4, rocked.

Postby Trevor » Thu Feb 13, 2020 11:30 pm

I didn't know if I should create a separate thread for this or not but I decided it would be fitting here. I want to thank you all again for your kind words and suggestions. I copied down Stavia's lab suggestions from the primer you helpfully linked to and took them to my doctor. He dismissively said they "Don't test D3" and "We've stopped testing for homocysteine as we've learned it doesn't predict anything", but he was willing to test pretty much every other basic thing on the list. Here are my results:

Image
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So other than a somewhat high Gamma GT and a slightly low B12 (Which I assume I can fix with supplements/diet) and that weird comment about hypothyroidism even though my level was normal, I was kind of shocked at how...okay my labs were?

I still have some weight to lose and I know my blood sugar and cholesterol could be better, so I will work on both of those things, but I'm glad to at least have this baseline, so now if I experiment in terms of diet, supplements and lifestyle, I can share what's worked (or not worked) for me. I have a follow up with my doctor next week, is there any suggestions on any questions I should ask, or anything else about these numbers I should be considering?

Thanks again for being great support and a quality resource.

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Re: Just discovered I'm 4/4, rocked.

Postby NF52 » Sun Feb 16, 2020 2:16 pm

Trevor wrote:...So other than a somewhat high Gamma GT and a slightly low B12 (Which I assume I can fix with supplements/diet) and that weird comment about hypothyroidism even though my level was normal, I was kind of shocked at how...okay my labs were?... I have a follow up with my doctor next week, is there any suggestions on any questions I should ask, or anything else about these numbers I should be considering?...
Hi again, Trevor,

Celebrate all those good labs; it shows the benefit of being a young, fit person whose heart, liver, brain, thyroid and bone marrow are working together nicely. As for that B12, you do want to get that up, and probably should talk to your doctor about what dose of supplement they would recommend. During the clinical trial I was in, by B-12 level of 422 was considered "low" even though it was in the published "normal range. I was advised to add one one 500 mcg lozenge of methylcobalamin a day, which is the same as a 0.5 mg dose. Doing so brought my level up to the mid 600's, nicely above the 500 level the study neurologist--and Dr. Bredesen--view as needed for optimal brain health. Note that the B-12 in some store-bought vitamins is not methylcobalamin and may not be absorbed as well by those of us with ApoE 4.

Enjoy having some good news, Trevor!
4/4 and still an optimist!

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floramaria
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Re: Just discovered I'm 4/4, rocked.

Postby floramaria » Sun Feb 16, 2020 2:30 pm

Trevor wrote:
So other than a somewhat high Gamma GT and a slightly low B12 (Which I assume I can fix with supplements/diet) and that weird comment about hypothyroidism even though my level was normal, I was kind of shocked at how...okay my labs were?.

Congratulations, Trevor.
In addition to raising the B12, following up on the comment on hypothyroidism is the only thing that sticks out to me. That does seem odd; I’d love to have that TSH! Just for the sake of understanding, I’m curious about why they don’t test Vit D. It is quite commonly low.

Focusing on lifestyle, diet and supplements seems like a good place to put your energies going forward.
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Re: Just discovered I'm 4/4, rocked.

Postby slacker » Sun Feb 16, 2020 3:50 pm

No, suspected hypothyroidism


If you take the comma out of the above statement, there is a perfectly rational explanation of your TSH thyroid test. Typo?

Your GGT is slightly elevated. This is a liver test that is not a part of the standard USA "liver function panel", so I rarely see it and do not order it specifically when evaluating liver health. The elevated GGT does point in the direction of some kind of liver disturbance. Again, in the US, it is usually attributed to alcohol intake, which can cause "fatty liver" and lead to severe liver damage. However, I suspect that GGT can also be elevated in non-alcoholic fatty liver, which is driven by overweight/obesity, sugar, and starchy carbohydrates. I was unable to find an easy to understand reference on my hypothesis. Here is Mayo Clinic's explanation of the GGT liver test. I think your GGT elevation needs some additional attention, retesting in 3 months at bare minimum. (I work at a liver specialty clinic)
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Re: Just discovered I'm 4/4, rocked.

Postby circular » Mon Feb 17, 2020 1:04 pm

anotherdreamer wrote: There is one gene CETP rs5882 (g/g allele is best) that is able to modify the risk of apoe4

anotherdreamer, do you know which if any direct-to-consumer genetic tests (including the version #) includes this if you run it through Promethease or look at raw data? I have a 'superfile' at Promethease and it's not coming up.
ApoE 3/4 > Thanks in advance for any responses made to my posts.


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