Re: hi :)

[markus123]

Hi, I just did a test for fun and because covid did hurt, so I wanted to gather information about me. I did a tellmegen test, and the alzheimer part says I'm in the bad 3%. More precisely it says, there are 97% of users that have better genes in respect to Alzheimers disease.

So, their website doesn't say why; they just list what has been analyzed, without further information or any of my genotypes. So I had to download the raw data, and most (like 98% or 99%) of the lines in the .csv file show letters in the genotype column.

I searched the SNP number for APOE4 and found the lines. But in one of them my genotype is "--". Is that a sign that the tellmegen just didn't tell me? Redacted it? I asked their support and they said some things, but not really anything about the completeness of the test or their policies.

That's the two matching lines I found:
dupseq-rs7412 19 45412079 CC
ilmnseq_rs429358_ilmnTOP_5AT 19 45411941 --

So, I'm CC on the 7412, but nothing (--) on 429358.

Do you have an idea how to get the data or what's it worth? I'm 42, my grandpa had dementia and my mother is 74 and she's not very good at remembering words but has no dementia.

Kind regards

[markus123]

Got a reply.

"The probe you are referring to, when it appears - it means that it has failed and the genotype could not be obtained."

Maybe I don't want to know. I mean.. could mean anything. But there's so many lines that ... uh I just won't try again and eat mediterrain diet. Kind regards

PS: Another mail (from Spain I believe) on Sunday (!):

"Yes, we believe it may be a manufacturing error in all Illumina chips.
That's why we ended up using proxy SNPs and imputation so we don't rely so much on a single mutation."

I like them, honest people. Need to remove my 1 star review on Amzn.

Sorry for the unclear things I posted as a newbie. My first gene test. Liked it, they warned be about a super high likelyhood for cataract, and my mom has a little bit cataract, too. And they found out about my UV-triggered psoriasis, so I think they may be right to put me in the 3% section of the alzheimer thing.

Kind regards

[abalboa]

Got a reply.

"The probe you are referring to, when it appears - it means that it has failed and the genotype could not be obtained."

Maybe I don't want to know. I mean.. could mean anything. But there's so many lines that ... uh I just won't try again and eat mediterrain diet. Kind regards

PS: Another mail (from Spain I believe) on Sunday (!):

"Yes, we believe it may be a manufacturing error in all Illumina chips.
That's why we ended up using proxy SNPs and imputation so we don't rely so much on a single mutation."

I like them, honest people. Need to remove my 1 star review on Amzn.

Sorry for the unclear things I posted as a newbie. My first gene test. Liked it, they warned be about a super high likelyhood for cataract, and my mom has a little bit cataract, too. And they found out about my UV-triggered psoriasis, so I think they may be right to put me in the 3% section of the alzheimer thing.

Kind regards

Welcome markus123,
Thank you for joining our site and posting in the forum. It sounds like your results are unclear but whether you decide to pursue further testing or not, there is a wealth of information on this site about lifestyle choices that can reduce the risk of developing dementia.

There is certainly a lot to consider when thinking about getting tested and we have a very thoughtful overview "Thinking about testing" that can help you decide if you want to consider more definite testinghttps://www.apoe4.info/thinking-about-testing/
You had also noted your result on one SNP was: rs7412 CC. Here is a little more information on Snpedia's page on ApoE: https://www.snpedia.com/index.php/APOE if you would like to see what rs7412 means you can check here. Please also keep in mind that genes are not an unavoidable fate- there are many people with ApoE 4/4 that don't develop Alzheimer's and we have forum members here in their 70's and 80's with ApOE 4/4 who are just fine!

As a Support Team Intern, I can also share several tools & resources to help you get the most out of your experience if you would like to explore the site in more detail. The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote (") button when replying to a post. Using the button will automatically alert the member of your response.

If you are interested in learning more about other members check out Our Stories.

Again, I am so glad you joined our forum as a "newbie"! I look forward to hearing from you in the future. Please feel free to reach out anytime.

Warmly,
Angie

[markus123]

Thanks What I don't get about the thing that happened: There's this genotypes combination that probably causes most of the danger, 4/4. The lab detects a partial possibility (CC and -- which puts me into a 2/4 I believe, at least) and their PRS algorithm puts me into the second smallest risk category of 3%, causing support inqueries. Like a worst case fallback evaluation.

They said in another sentence that they actually, for AD, look at hundreds of genes. So they could mean imputation, but they also say, a single genotype makes almost no difference.

Their support said about AD: "But hundreds/thousands of other mutations have been analysed and the failure of 1 is of no consequence."

I like their (partial) honesty, but in some way it makes not much sense. The -- could have been TT, in which case they need to know other genes that will act as bad as the 4/. I couldn't find many such topics yesterday. I did find a few, but they seemed to rely on correct evaluation of the most significant genotype, judging by the numbers. Vaguely judging, but it's still true, I think, that knowing rs429358 is more or less the base.

It looks like to put someone into the bad 3%, one should not provide a csv file with incomplete genotypes. They rather should have said that they can't know, because now they implied that either I get the bad raw data file and they have a good one, or that they know quite some more risk loci to change the PRS value quite a lot.

So, I think 23andme might be a good idea. My grandpa had dementia, but actually he was given haldoperidol for years, which was to tamper his mood. My mom is completely fine.

If I get another test from another company, I'll ask them about AD and their accuracy before I'll pay.

Kind regards!
And thanks a lot

[abalboa]

Thanks What I don't get about the thing that happened: There's this genotypes combination that probably causes most of the danger, 4/4. The lab detects a partial possibility (CC and -- which puts me into a 2/4 I believe, at least) and their PRS algorithm puts me into the second smallest risk category of 3%, causing support inqueries. Like a worst case fallback evaluation.

They said in another sentence that they actually, for AD, look at hundreds of genes. So they could mean imputation, but they also say, a single genotype makes almost no difference.

Their support said about AD: "But hundreds/thousands of other mutations have been analysed and the failure of 1 is of no consequence."

I like their (partial) honesty, but in some way it makes not much sense. The -- could have been TT, in which case they need to know other genes that will act as bad as the 4/. I couldn't find many such topics yesterday. I did find a few, but they seemed to rely on correct evaluation of the most significant genotype, judging by the numbers. Vaguely judging, but it's still true, I think, that knowing rs429358 is more or less the base.

It looks like to put someone into the bad 3%, one should not provide a csv file with incomplete genotypes. They rather should have said that they can't know, because now they implied that either I get the bad raw data file and they have a good one, or that they know quite some more risk loci to change the PRS value quite a lot.

So, I think 23andme might be a good idea. My grandpa had dementia, but actually he was given haldoperidol for years, which was to tamper his mood. My mom is completely fine.

If I get another test from another company, I'll ask them about AD and their accuracy before I'll pay.

Kind regards!
And thanks a lot

I have to agree with you.... it seems this particular set of data creates as many questions as answers and if you are interested to know your APOE4 status definitively you can certainly be tested with simple & conclusive results. Please be sure to stay connected and let us know how your doing.
Angie

[markus123]

Thanks so much. I feel quite good, because it was worth clicking on the link for the raw data download. Early this morning, support told me it has been no chip problem but a call rate problem. I googled and thought, well, maybe I really should not have spilled that bit of spit with disinfectant. Some 15% was lost, maybe that caused the low call rate. Or maybe a mutation? To be honest, I really just want to hear some "it's okay, it's a bit less bad than we thought" and "just go on doing stuff". I have noticed my word searches more often in the last two days than in years before. It's the multitasking to blame.

It's counter-intuitive for me to pay money and time for being assured that a bad thing might happen. I have been at my top of health precaution for a long time. But I need to get sporty, because I got lazy after covid really hurt the muscles so much. So I think I will just try to get a nice message from them and then never touch that topic again and learn all the health tips from here. I like how they focus on brain health, that's good in any case.

Kind regards

[abalboa]

Thanks so much. I feel quite good, because it was worth clicking on the link for the raw data download. Early this morning, support told me it has been no chip problem but a call rate problem. I googled and thought, well, maybe I really should not have spilled that bit of spit with disinfectant. Some 15% was lost, maybe that caused the low call rate. Or maybe a mutation? To be honest, I really just want to hear some "it's okay, it's a bit less bad than we thought" and "just go on doing stuff". I have noticed my word searches more often in the last two days than in years before. It's the multitasking to blame.

It's counter-intuitive for me to pay money and time for being assured that a bad thing might happen. I have been at my top of health precaution for a long time. But I need to get sporty, because I got lazy after covid really hurt the muscles so much. So I think I will just try to get a nice message from them and then never touch that topic again and learn all the health tips from here. I like how they focus on brain health, that's good in any case.

Kind regards

Wonderful... proactively focusing on brain health and overall health never has a downside...

[markus123]

Hello.

I got another Email. This time it's really helpful.
[...]
"In your case (sample: EUFEDCBS3725), it is probable that you have one copy of the APOE e4 risk allele and one copy of the common APOE e3 allele."
[...]

That's cool. So maybe I'm 3/4. But they couldn't find out, and I think with my old sample, they will not. I'm not sure what to do, but I think "3%" is a very direct warning. I wished it would go higher to normal - sorry if that sounds silly. If I understand it right, it's mostly the 3/4 that puts me roughly in the 3%. I thought that would belong to 4/4, but they are doing the math.

Kind regards

[abalboa]

Hello.

I got another Email. This time it's really helpful.
[...]
"In your case (sample: EUFEDCBS3725), it is probable that you have one copy of the APOE e4 risk allele and one copy of the common APOE e3 allele."
[...]

That's cool. So maybe I'm 3/4. But they couldn't find out, and I think with my old sample, they will not. I'm not sure what to do, but I think "3%" is a very direct warning. I wished it would go higher to normal - sorry if that sounds silly. If I understand it right, it's mostly the 3/4 that puts me roughly in the 3%. I thought that would belong to 4/4, but they are doing the math.

Kind regards

Good morning! Glad to hear you might have some more definitive information. My understanding is that within the general population of individuals that carry no APOE4 gene the risk of developing AD is approx. 9%, as a 3/4 carrier that risk goes to 30% and with two copies 4/4 the risk increases to 50%. I have also attached a link to the a risk overview from our primer is you would like to review risk of developing Alzheimer's
Again though, the good news is that mindful lifestyle choices can significantly decease those risks and genes do not solely ensure an outcome of AD. Many carriers do not develop AD in their lifetime. I hope this is helpful...

[markus123]

Hi again, didn't want to expand the thread, but some weird question was lingering in my mind. Don't really know what I'm trying to find out, but it goes like this: Do you have easy to understand information what the APOE 3 or 4 issue can mean for other health situations?

I've read that the allels cause a) different lipid transport in the brain, b) arteriosclerosis. I know the human body is very complex, but when I'm lean (unfortunately for me fit fat persons are healthier than unfit lean persons), I thought that's some protection, is it?

It goes back to the fat topic from years ago where I did not understand how fat particles, so to speak in laymans terms, would stick to the inside of my blood vessels; yet I'm really lean and don't save fat except for a bit on my hips.

So, actually I might drop dead from fat (LDL) related arteriosclerosis, looking fit until I just drop dead. Is that true, and is it somewhat the same thing with Alzheimers disease?

In general, after taking a gene test and not wanting to spend more money, I'm latently looking for other indicators of my probable health status. The one thing left to do is begin jogging regularly, but after covid every muscle still hurts, for over a year now.

Lengthy post, sorry, best regards