New member with some questions...

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
TJH
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New member with some questions...

Postby TJH » Tue Mar 30, 2021 2:33 pm

I just recently (inadvertently) found out I am APOE3/4 while searching for info about Compound MTHFR , which I also am. In the week since I’ve been researching on this site pretty much non-stop.
A little background…I’m female, two weeks from 40. I have no family history of AZ or dementia. I already eat a pretty much plant-based/Mediterranean diet, limit alcohol and have been lazily intermittent fasting for the last year, so those changes are easy to implement. I exercise 5+ days a week and am, on paper, very healthy. I take a boatload of supplements already to deal with long standing anxiety and depression. Most of them are on the helpful lists I’ve seen here.
I downloaded my information from Prometheus, Genetic Genie and Nutrahacker. I’m COMT G/G rs6269 & rs165722 and MTRR G/G & MTR G/G (which I think is not good based on my research, am I correct?). It’s extra confusing because many recommendations on these reports contradict each other (Take methyl b-12/avoid methyl b-12 for example). I'm overwhelmed by them to be honest.
In the past 6 months I have noticed a difficulty in finding the right word to use at times. I know what I want to say, but my brain just can’t come up with the correct word. I thought this was odd, but I just kind of ignored it. This all puts it in a new light.
So I guess my questions are-
1. Am I overreacting? Should I be worried and immediately contact my Dr. based on this info or am I doing the right things currently and just need to relax?
2. How do you most effectively broach the subject with your Dr? (My health provider is notoriously stingy with testing). What tests should I ask for specifically to start? (I searched for a list of tests on this site and it said they were coming soon?)
3. Should I/how can I get my methylation/genetic information looked at by someone who can explain the intricacies of interacting genes, and what best to do about them? Is this simply a matter of contacting a functional medical doctor as well as my primary Dr?
Please forgive me, as I am sure I have asked questions that have been answered sufficiently elsewhere. I probably also just needed to vent as this feels overwhelming and is not exactly the news I wanted just before a big “you’re getting old!” birthday.

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seachangehealthcoach
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Re: New member with some questions...

Postby seachangehealthcoach » Tue Mar 30, 2021 3:36 pm

TJH wrote:I just recently (inadvertently) found out I am APOE3/4 while searching for info about Compound MTHFR , which I also am. In the week since I’ve been researching on this site pretty much non-stop.
A little background…I’m female, two weeks from 40. I have no family history of AZ or dementia. I already eat a pretty much plant-based/Mediterranean diet, limit alcohol and have been lazily intermittent fasting for the last year, so those changes are easy to implement. I exercise 5+ days a week and am, on paper, very healthy. I take a boatload of supplements already to deal with long standing anxiety and depression. Most of them are on the helpful lists I’ve seen here.
I downloaded my information from Prometheus, Genetic Genie and Nutrahacker. I’m COMT G/G rs6269 & rs165722 and MTRR G/G & MTR G/G (which I think is not good based on my research, am I correct?). It’s extra confusing because many recommendations on these reports contradict each other (Take methyl b-12/avoid methyl b-12 for example). I'm overwhelmed by them to be honest.
In the past 6 months I have noticed a difficulty in finding the right word to use at times. I know what I want to say, but my brain just can’t come up with the correct word. I thought this was odd, but I just kind of ignored it. This all puts it in a new light.
So I guess my questions are-
1. Am I overreacting? Should I be worried and immediately contact my Dr. based on this info or am I doing the right things currently and just need to relax?
2. How do you most effectively broach the subject with your Dr? (My health provider is notoriously stingy with testing). What tests should I ask for specifically to start? (I searched for a list of tests on this site and it said they were coming soon?)
3. Should I/how can I get my methylation/genetic information looked at by someone who can explain the intricacies of interacting genes, and what best to do about them? Is this simply a matter of contacting a functional medical doctor as well as my primary Dr?
Please forgive me, as I am sure I have asked questions that have been answered sufficiently elsewhere. I probably also just needed to vent as this feels overwhelming and is not exactly the news I wanted just before a big “you’re getting old!” birthday.


Hi TJH,
Welcome to the forum! We are glad you found us! You are asking all the right questions.I must say your lifestyle is one I respect, from eating mostly plant based to exercising 5 days a week!! Keep up the great work. I also admire your curiosity as it pertains to your ApoE3/4. I am sorry you are feeling overwhelmed but it's definitely understandable. One common theme that is always paramount on this forum is that your genes are not your destiny. I hope that offers a bit of comfort as you navigate through.

I also wanted to point out a few links to help better acquaint you with this well stocked forum. The links below include the How-To-Guide, Primer, Our Stories and a Direct to Consumer Lab Testing Options link. I am also going to include a link to the Institute for Functional Medicine website where you can search for a FM doctor near you. Please keep in touch on the forum and know that others with a medical background will also respond to help answer some of your more medical questions.

How-To Guide

Primer

Our Stories

Lab Testing

IFM Physician Search
Jennifer Balzano
Founder, SeaChange Health Coaching
M.A., B.S., Functional Medicine Certified Health Coach

Tincup
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Re: New member with some questions...

Postby Tincup » Tue Mar 30, 2021 5:01 pm

TJH wrote:1. Am I overreacting? Should I be worried and immediately contact my Dr. based on this info or am I doing the right things currently and just need to relax?


I'm a 3/4 married to a 4/4 woman. I'm 65 and she's 61. I'd relax and just pay attention to the big drivers: metabolism, exercise, sleep, stress and (few talk about this) breathing.

2. How do you most effectively broach the subject with your Dr? (My health provider is notoriously stingy with testing). What tests should I ask for specifically to start? (I searched for a list of tests on this site and it said they were coming soon?)


You don't need to do everything at once and can order (and pay for) tests you think are most important yourself. We found out our status in 2014 and have tested some, but certainly not all things. We are cognitively well.

3. Should I/how can I get my methylation/genetic information looked at by someone who can explain the intricacies of interacting genes, and what best to do about them? Is this simply a matter of contacting a functional medical doctor as well as my primary Dr?
Please forgive me, as I am sure I have asked questions that have been answered sufficiently elsewhere. I probably also just needed to vent as this feels overwhelming and is not exactly the news I wanted just before a big “you’re getting old!” birthday.


A good question that we've yet to sort well.
Tincup
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seachangehealthcoach
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Re: New member with some questions...

Postby seachangehealthcoach » Tue Mar 30, 2021 6:22 pm

TJH wrote:I just recently (inadvertently) found out I am APOE3/4 while searching for info about Compound MTHFR , which I also am. In the week since I’ve been researching on this site pretty much non-stop.
A little background…I’m female, two weeks from 40. I have no family history of AZ or dementia. I already eat a pretty much plant-based/Mediterranean diet, limit alcohol and have been lazily intermittent fasting for the last year, so those changes are easy to implement. I exercise 5+ days a week and am, on paper, very healthy. I take a boatload of supplements already to deal with long standing anxiety and depression. Most of them are on the helpful lists I’ve seen here.
I downloaded my information from Prometheus, Genetic Genie and Nutrahacker. I’m COMT G/G rs6269 & rs165722 and MTRR G/G & MTR G/G (which I think is not good based on my research, am I correct?). It’s extra confusing because many recommendations on these reports contradict each other (Take methyl b-12/avoid methyl b-12 for example). I'm overwhelmed by them to be honest.
In the past 6 months I have noticed a difficulty in finding the right word to use at times. I know what I want to say, but my brain just can’t come up with the correct word. I thought this was odd, but I just kind of ignored it. This all puts it in a new light.
So I guess my questions are-
1. Am I overreacting? Should I be worried and immediately contact my Dr. based on this info or am I doing the right things currently and just need to relax?
2. How do you most effectively broach the subject with your Dr? (My health provider is notoriously stingy with testing). What tests should I ask for specifically to start? (I searched for a list of tests on this site and it said they were coming soon?)
3. Should I/how can I get my methylation/genetic information looked at by someone who can explain the intricacies of interacting genes, and what best to do about them? Is this simply a matter of contacting a functional medical doctor as well as my primary Dr?
Please forgive me, as I am sure I have asked questions that have been answered sufficiently elsewhere. I probably also just needed to vent as this feels overwhelming and is not exactly the news I wanted just before a big “you’re getting old!” birthday.


Hi TJH,
Welcome to the forum! We are glad you found us! You are asking all the right questions.I must say your lifestyle is one I respect, from eating mostly plant based to exercising 5 days a week!! Keep up the great work. I also admire your curiosity as it pertains to your ApoE3/4. I am sorry you are feeling overwhelmed but it's definitely understandable. One common theme that is always paramount on this forum is that your genes are not your destiny. I hope that offers a bit of comfort as you navigate through.

I also wanted to point out a few links to help better acquaint you with this well stocked forum. The links below include the How-To-Guide, Primer, Our Stories and a Direct to Consumer Lab Testing Options link. I am also going to include a link to the Institute for Functional Medicine website where you can search for a FM doctor near you. Please keep in touch on the forum and know that others with a medical background will also respond to help answer some of your more medical questions.

How-To Guide

Primer

Our Stories

Lab Testing

IFM Physician Search
Jennifer Balzano
Founder, SeaChange Health Coaching
M.A., B.S., Functional Medicine Certified Health Coach

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floramaria
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Re: New member with some questions...,

Postby floramaria » Tue Mar 30, 2021 9:41 pm

TJH wrote:I just recently (inadvertently) found out I am APOE3/4 while searching for info about Compound MTHFR , which I also am. In the week since I’ve been researching on this site pretty much non-stop.
A little background…I’m female, two weeks from 40. I have no family history of AZ or dementia. I already eat a pretty much plant-based/Mediterranean diet, limit alcohol and have been lazily intermittent fasting for the last year, so those changes are easy to implement. I exercise 5+ days a week and am, on paper, very healthy. I take a boatload of supplements already to deal with long standing anxiety and depression. Most of them are on the helpful lists I’ve seen here.
I downloaded my information from Prometheus, Genetic Genie and Nutrahacker. I’m COMT G/G rs6269 & rs165722 and MTRR G/G & MTR G/G (which I think is not good based on my research, am I correct?). It’s extra confusing because many recommendations on these reports contradict each other (Take methyl b-12/avoid methyl b-12 for example). I'm overwhelmed by them to be honest.
In the past 6 months I have noticed a difficulty in finding the right word to use at times. I know what I want to say, but my brain just can’t come up with the correct word. I thought this was odd, but I just kind of ignored it. This all puts it in a new light.
So I guess my questions are-
1. Am I overreacting? Should I be worried and immediately contact my Dr. based on this info or am I doing the right things currently and just need to relax?
2. How do you most effectively broach the subject with your Dr? (My health provider is notoriously stingy with testing). What tests should I ask for specifically to start? (I searched for a list of tests on this site and it said they were coming soon?)
3. Should I/how can I get my methylation/genetic information looked at by someone who can explain the intricacies of interacting genes, and what best to do about them? Is this simply a matter of contacting a functional medical doctor as well as my primary Dr?
Please forgive me, as I am sure I have asked questions that have been answered sufficiently elsewhere. I probably also just needed to vent as this feels overwhelming and is not exactly the news I wanted just before a big “you’re getting old!” birthday.

Hi TJH, while I cannot answer many of your specific questions, I also have a few suggestions on how you can find information related to your questions. Our Wiki has an excellent section on methylation. Once you use the green link to get to the Wiki, It is section 4.14. It includes discussion of MTRR and MTR and might help you to understand how some of these SNP’s relate to each other and may provide some clues as to how to proceed. By experimenting and following your biomarkers, ie homocysteine, you can most likely fine tune this to your own personal biochemistry.
Another great tool to know about is our search function. You can access it by tapping the magnifying glass icon to the left of your user name in upper right of page. By typing in the term you are looking for, you see all previous posts that include that. I typed in MTRR and turned up several previous posts.

For testing, when you look at the Primer, you’ll see a basic list of tests. I think those are a great place to start. Even your lab-stingy doctor may be willing to write a requisition for these. Another option is to get what you can through you PCP and then fill in with direct to consumer testing. I got a lot of lab work done one year through Life Extension during their 1/2 price lab work sale which starts in early summer I think. Some of their panels include a lot of the recommended tests. But again, it seems worthwhile to request the tests from your doctor first.

As for your first question, it doesn’t sound to me that you are over-reacting . You seem to be assessing things carefully and gathering information. It is natural to want to understand risks and take steps to lessen them. And at the same time, especially given your overall healthy lifestyle and good health, you have plenty of time and space. My own primary cognitive issues manifested as difficulty finding words and (even more shocking) speaking the wrong word when the right word was in my mind. That kind of issue, along with problems with organizing and calculating are sometimes associated with toxins. So toxic exposure might be an area to consider along the way. As a fellow 3/4 a few decades further along in my life than you are, I’d say pay attention, take small steps and.....yes! Relax!

Best wishes,
Floramaria
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
Qualified ReCODE Practitioner

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Re: New member with some questions...

Postby Tincup » Wed Mar 31, 2021 2:18 pm

TJH wrote:2. How do you most effectively broach the subject with your Dr?


Another thought, before you talk to your doc, there may be considerations for long term care insurance or life insurance of having this in your medical records. This is discussed a bit in our wiki.
Tincup
E3,E4

Sara Barthel
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Re: New member with some questions...

Postby Sara Barthel » Sun Apr 11, 2021 11:38 am

TJH wrote:1. Am I overreacting? Should I be worried and immediately contact my Dr. based on this info or am I doing the right things currently and just need to relax?
2. How do you most effectively broach the subject with your Dr? (My health provider is notoriously stingy with testing). What tests should I ask for specifically to start? (I searched for a list of tests on this site and it said they were coming soon?)
3. Should I/how can I get my methylation/genetic information looked at by someone who can explain the intricacies of interacting genes, and what best to do about them? Is this simply a matter of contacting a functional medical doctor as well as my primary Dr?

Hi TJH, I'm so glad you found this site and first of all want to reassure you that your questions are completely normal. You clearly care about your health and are taking so many important steps toward protecting your health already! I wanted to send you a note because I see SO much of myself in you - same age, 3/4, MTHFR, care a lot about my health etc but any time I can't remember a word or name I wonder if it's because I have blood-brain-barrier permeability and damage is occuring, or because of 2 head injuries in the past couple of years. But, I also echo what everyone else has commented - stressing about it to the point of anxiety or fixation does us no good, in fact the opposite. I hope that you can find a great functional medicine practitioner here on the Wiki who is Bredesen trained because that's invaluable. Finding a doctor who will order the right labs for your unique needs, not just what insurance covers, is important. For me, I also make sure that I'm monitoring my vitamin levels (particularly B vitamins) and am taking methylated forms of the B vitamins in addition to monitoring my homocysteine levels. I also pay out of pocket for blood testing every year or so for labs through Vibrant America (Neural Zoomer and Wheat Zoomer for intestinal permeability because that and blood-brain-barrier permeability seem to be closely related). I use this as a checkup to be sure my lifestyle is working for me and see it as an important investment in my future. Hope this is helpful, and again I just want to encourage you in all of the amazing steps you have taken thus far in your health journey!

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Re: New member with some questions...

Postby SusanJ » Sun Apr 11, 2021 3:53 pm

TJH wrote:I downloaded my information from Prometheus, Genetic Genie and Nutrahacker. I’m COMT G/G rs6269 & rs165722 and MTRR G/G & MTR G/G (which I think is not good based on my research, am I correct?). It’s extra confusing because many recommendations on these reports contradict each other (Take methyl b-12/avoid methyl b-12 for example). I'm overwhelmed by them to be honest.


One of the best books I've read on how to tackle supplementation and methylation, is Dirty Genes, by Ben Lynch (well known for his methylation work). His argument is that there are several other places you might have to fix first, before providing any methylation support, so what you take actually goes to supporting methylation. He doesn't go by SNPs, he goes by symptoms, which was a bit eye opening for me. I've used his method with fairly good results, so you might give it a try.

I have several variants in the methylation pathway that cause problems, and it makes sense to me that you have to look more holistically than take methyl b12 or not. Without that view, you can cause a heap of side effects with folate, B12 and other supplements and not know why. Especially if you are taking other supplements for anxiety and depression.

A functional doctor may or may not be well versed in the nuance, and might be no different than a traditional doctor who provides prescription drugs according to accepted practice (e.g "take 1mg methylcobalamin" for your SNPs). I say that from experience. So, find a doctor who listens and, always be careful to start supplements low and move the dose up as needed.

Keep learning! It will help you be your best advocate.

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Re: New member with some questions...

Postby TJH » Sun Apr 11, 2021 4:28 pm

Thank you so much for responding! We do sound a lot alike.
Sara Barthel wrote:
TJH wrote:For me, I also make sure that I'm monitoring my vitamin levels (particularly B vitamins) and am taking methylated forms of the B vitamins in addition to monitoring my homocysteine levels. I also pay out of pocket for blood testing every year or so for labs through Vibrant America (Neural Zoomer and Wheat Zoomer for intestinal permeability because that and blood-brain-barrier permeability seem to be closely related).
Do you monitor your vitamin/homocysteine levels by testing at your Dr regularly? Also, could you explain a bit more about blood-brain barrier permeability?
I have calls in to three functional dr's (one of whom is Bredesen trained) and am hoping for some forward momentum in the coming weeks.

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Re: New member with some questions...

Postby TJH » Sun Apr 11, 2021 4:32 pm

SusanJ wrote:I have several variants in the methylation pathway that cause problems, and it makes sense to me that you have to look more holistically than take methyl b12 or not. Without that view, you can cause a heap of side effects with folate, B12 and other supplements and not know why. Especially if you are taking other supplements for anxiety and depression.
This is an excellent point. I took some methylated B12 and Folate at the start of this and had the worst day ever. My body did not like it one bit.
I was already taking a bunch of supplements when I discovered this so I am very interested to find out what is working and what may be holding me back. Thank you for your response!


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