Vegan Newbie, Accidental 4/4 discovery, Terrified

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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ZenGinner
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Vegan Newbie, Accidental 4/4 discovery, Terrified

Postby ZenGinner » Sun Jun 18, 2017 1:02 pm

Hey! I am, as the subject says NEW, and bit out of my element.
I have been looking at your site since Thursday, and finally got up the nerve to join.

I have been vegetarian for 32 years. I have been vegan for the last 5 years. (I add that up front for the vegans, here). Vegetarian was based on ethics, Vegan was based on health and ethics. I mention that, as it will impact my dietary choices, even with 4/4.

I discovered my 4/4 status, accidentally. I became concerned about my cholesterol level, which had RISEN since I switched from vegetarian to vegan in 2012. My doctor recommended the Boston Heart Profile (BHP), due to a tremendous family history of CVD. I received my results in 2014. This gene status (only for the purpose of CVD) was in that report. During the genetic consult with my physician, the CVD aspects of the gene was discussed. Unfortunately, the suggestion was to increase my (at the time, low) consumption of saturated fat, assuming that my cholesterol level was related to my low fat diet. I did so. It lowered for the first two years. This year, it started to go back up.

So, Wednesday night - I sat down with my blood results and started Googling reasons for a VEGAN to have high cholesterol. And, joy of all joys, I came across the link between the ApoE 4/4 and Alzheimers.
My first reaction was tears, a lot of them.
My second reaction was anger - at my physician for NOT telling me, and wasting valuable remedial years.
My third reaction, honestly, was to see if physician-assisted suicide existed for a late stage Alzheimers Diagnosis.

After three days, I can't say I am completely over the shock, but I am dealing. Now, I need wrap my mind around the actual enhanced risk and a prevention approach.

Here is what you probably need to know, if you desire to give me opinions on where to start.
I live alone, and travel for work - constantly.
I have no children, no spouse and no real support system (and will not if I am diagnosed).
I am a person that actually modifies my behavior to improve my health.

Risk factors, as I recognize them.
- I am 52 and in good health (or so I thought).
- I was prematurely menopausal. I became fully menopausal in 2004, and started bio-identical hormone supplements within a few months. I still take them.
- I eat a non-junk food vegan diet (although, from what I read for AD, still too high in carbs and sugar for a good future). I have not been to anywhere with fast food in 20 years, and make almost all of my own food.
- I exercise almost every day. I walk 5-11 miles a day for work, and hike, kayak and bike on many weekends.
- I have been, pursuant to doctors instructions, adding lots of coconut oil to my diet for the past two years. Arrg.
- My family is not the closest, or the most communicative. However, to my knowledge, and my mother's, we have never known anyone to be diagnosed with AD. (My grandfather suffered a type of dementia in his late 70's that does not fit the parameters of AD. Probably alcoholic.)
- I do not drink alcohol, haven't for YEARS, and have never much participated in that activity.
- I do not and have never smoked.
- I have good muscle mass (well above average for a female of my size, despite my age.)
- I could afford to loose between 10-20 lbs.
- My mother is ApoE 3/4. I have no idea about anyone else in my immediate or extended family.
- I am well-educated, but honestly, don't use my brain much in my current job. (Guess I'll learn a language.)

LABS FROM 6/9/17
Total Cholesterol 236 mg/dL
LDL 143 mg/dL
NON HDL 165 mg/dL
HDL 71 mg/dL
Triglycerides 110 mg/dL
Glucose (fasting) 92
MCH 26.9 pg
Red Blood Cell Count 5.22 million/uL
Iron 119 mcg/dL
Alkaline Phosphatase 41U/L
ALT 18 U/L
Albumin 4.6 g/dL
Albmin/Blobulin Ration 1.8 calc
Urea Nitrogen (BUN) 9 mg/dL
Globulin 2.5 g/dL (calc)
Chloride 106 mmol/L
AST 19 U/L
Calcium 10 mg/dL
Creatinine .95 mg/dL
Protein total 7.1 g/dL
Sodium 142 142 mmol/L
Bilirubin total .7
Carbon Dioxide 27
Potassium 5.3 mmol/L
RDW 13.6%
Absolute monocytes 374 cells/uL
MCHC 32.4 g/dL
MPV 8.1 fL
Absolute Basophils 27 cells/uL
Absolute Lymphocytes 2115 cells/uL
White Blood Cell Count 6.8 thousand/uL
Hemoglobin 14.1 g/dL
MCV 83.1 fL
Platlet Count 254 thousand/dL
Absolute Neutrophils 4114 cells/uL
Absolute eosinophils 170 celle/uL
Hematocrit 43.4%
Vitamin B12 874 pg/mL
TSH w/Reflex to FT4 2.51 mlU/L
Vitamin D, 25-OH, Total, IA 35 ng/mL

CURRENT SUPPLEMENTS:
- B12/Folate/B6 Supplement
- Vegan D3 Supplement
- Nascent Iodine Supplement (using to shrink thyroid nodules)
- Magnesium Malate
- Same 400
- Garden of Life Womens Multi with Iron (was using w/o Iron due to menopausal status, but blood iron was always testing low).

OTHER RISKS FROM BHP
Factor V Leiden (increased risk of developing clots)

I included them all, as I am not yet sure what is relevant. I am still wading through the very dense (and very appreciated) initial information on the site.

SPECIFIC QUESTIONS:

1. I have read a lot (too much) research in the last 72 hours. They mention 4/4 risk of AD to be anywhere between 6-20 times higher, depending on the study/author. I cannot figure how to mathematically calculate that final figure. If 1/6 or 1/10 (depending on the study) people get AD, what fraction now represents me? Any clues?

2. Have I done monumental damage with Coconut Oil in the last 3 years?

3. Do I have time to transition into the appropriate protein/carb/fat ratios? Or, do I just need to throw out everything in my pantry and start over?

4. Is there any research demonstrating the benefits of the diet change, or its impact on development/diagnosis of AD?

5. What are the most important supplements to add immediately, while I wade through all of the info?

6. Tell me something good, cause it's looking pretty scary.

I would say that I'm glad to be here, but.... would rather not have to be reading it. I am, however, very glad you exist.
Thanks, in advance!

Kathleen
KK
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SusanJ
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Re: Vegan Newbie, Accidental 4/4 discovery, Terrified

Postby SusanJ » Sun Jun 18, 2017 1:54 pm

Hi Zen. It's a hard one to get your head around at first. Sending hugs because I know that punch to the gut feeling. Just know that it gets easier with time. Promise.

As you are probably seeing while reading on this site, there are practical things you can do.

Beyond supplements, most of us believe insulin resistance is the important one to tackle first. We have members who eat a higher carb diet, but the key thing from what you wrote is probably sugar. It's one area you can zone in on starting today. Triglycerides will drop with tighter control on that and your HbA1c and insulin levels will normalize (have you had those 2 tests done?).

The other is swapping healthy MUFAs (EVOO, avocado oil) for the coconut oil. Several of us here saw lipids go whacky with coconut oil.

Maybe start with those two.

I'll let others weigh in on your other markers and questions and keep reading!.

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Re: Vegan Newbie, Accidental 4/4 discovery, Terrified

Postby slacker » Sun Jun 18, 2017 2:13 pm

Welcome Zen;

Susan is a voice of reason and I second her two suggestions on reducing refined and starchy carbs as you can, and replacing the coconut oil. Slowly slowly. Breathe.

No one has a clear answer on increased risk of AD with 1 or 2 ApoE4 alleles; the studies conflict. The good news is that now is a great time to start implementing lifestyle changes that have the potential to decrease your personal risk.

There is a primer written by one of our physician members that starts with the basics covering diet, supplements, and suggested lab work. It is pages and pages of dense material, so again, go slowly. You can find it here:
viewtopic.php?f=33&t=1418

Managing stress and building social connections are helpful for health in general, and to help prevent dementia as well. Focusing on these may be useful for you.

Please note that we do have a search function for our website. Once you start to have other questions, it is quite likely that they have been asked and discussed in the past. We are all on this journey together, but do not always agree on the specific path.
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Re: Vegan Newbie, Accidental 4/4 discovery, Terrified

Postby Julie G » Sun Jun 18, 2017 4:45 pm

Welcome, (((Zenn.))) I'm another homozygote. I promise it gets easier with time. As Slacker points out, you're acting on this information at an excellent time BEFORE symptom onset. I highly doubt that you've done years of damage. Kudos to you, as a vegan, for supplementing the B's and Vitamin D. You may want to try to get your vitamin D at least up to 50 ng/mL. Many of us shoot for levels between 50-80 ng/mL. A few other supps that are particularly important for vegans are choline and a vegan form of Omega-3. Your brain needs both. Recent evidence suggests that E4 carriers need more Omega-3 (particularly DHA) than the other APOE genotypes. You can check your Omega-3 index with a simple blood test that measures the DHA + EPA in RBCs. You want your level to be at 10% or higher. Otherwise, as Susan points out, focusing on your glycemic markers is probably a great place to start.

Your cholesterol levels don't look bad. Your high HDL is likely protective. What do your advanced lipids look like- LDL-P or ApoB? Have you ever checked oxLDL? Given your family history of CVD, you may want to consider a low radiation EBT to check for coronary calcification. It's a test many of us have had to see where we stand.

It sounds like you've had a lifetime of pretty clean living. I know it's hard to assimilate this info at first. Take your time. There's no rush to incorporate these changes. Slowly read the primer and see what makes sense to you. We're all here to offer support. XO

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Re: Vegan Newbie, Accidental 4/4 discovery, Terrified

Postby Stavia » Sun Jun 18, 2017 6:02 pm

hi and welcome!!
firstly - you sound very panicked, which we all were when we first (usually unprepared) of our e4 satus.
Please take it slowly. There is no need to panic, you are still young and there is plenty of time. Alzheimer's associated with e4 is late onset.
Your questions
SPECIFIC QUESTIONS:

1. I have read a lot (too much) research in the last 72 hours. They mention 4/4 risk of AD to be anywhere between 6-20 times higher, depending on the study/author. I cannot figure how to mathematically calculate that final figure. If 1/6 or 1/10 (depending on the study) people get AD, what fraction now represents me? Any clues?

A. there is no way to extrapolate your personal risk from mathematics based on big groups of people. Sorry, it is an increased risk for you, but nobody can say exactly what your number is. There are too many variables.

2. Have I done monumental damage with Coconut Oil in the last 3 years?

A. nope. We don't know if it is actually a risk, plus we don't know if high LDL is a risk for Alzheimer's either. Don't worry about it now. Seriously.

3. Do I have time to transition into the appropriate protein/carb/fat ratios? Or, do I just need to throw out everything in my pantry and start over?

A. Transition slowly. Only slow changes are sustainable. There is no need to panic.

4. Is there any research demonstrating the benefits of the diet change, or its impact on development/diagnosis of AD?

A. yes, the MIND trial for a start (https://www.ncbi.nlm.nih.gov/pubmed/25681666 and the FINGER trial (http://www.thelancet.com/journals/lance ... 40-6736(15)60461-5/abstract)

5. What are the most important supplements to add immediately, while I wade through all of the info?

A. Not a major priority in my opinion, but curcumin (needs to be bio-available) is a good start IMO. And as to wading, please start with my primer. viewtopic.php?f=33&t=1418&start=10.

6. Tell me something good, cause it's looking pretty scary

A. epigenetics rule. You can modify your risk significantly. You need to lose the excess belly fat, and improve your glycaemic (glucosee in the blood) control. It's very do-able.
B. Your lipids are better than mine, and I'm not worried :)

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Re: Vegan Newbie, Accidental 4/4 discovery, Terrified

Postby ZenGinner » Sun Jun 18, 2017 6:30 pm

SusanJ:

Thanks so much!

I think I can follow that - insulin resistance first. Okay!
I have been debating the need to cut sugar out for a while. Guess I just needed this HUGE kick in the pants.

I have not had my HbA1c and Insulin levels tested since the Boston Heart Profile in 2014. They tell me they weren't bad. Obviously, I should get them tested again, now. Should I get them now, for a baseline? Or should I just wait until I have altered my habits for a bit, and do it then?

Last Tested 2014
HbA1c 5.9
Insulin 5

Okay, coconut oil out - as of today. I have some EVOO. Will buy some avocado oil tonight.

Thanks, again. Very helpful steps.
KK
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Re: Vegan Newbie, Accidental 4/4 discovery, Terrified

Postby ZenGinner » Sun Jun 18, 2017 6:36 pm

Slacker:

I agree, too breathing in the last few days. Aarrrggg. I guess I'm lucky I stumbled onto the bad news early enough to do something about it.

Thanks for the link to the primer. I have been looking at it. It is very dense for a non-medical gal. Quite the learning curve. But, I am pushing through.

Social connections are tough. I travel for work, and am only in an area for 1-4 months at a time. And, being a non-drinking vegan, many stranger social activities prove quite awkward.

Thanks for the tip about the search function. It has been helpful!
KK
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Re: Vegan Newbie, Accidental 4/4 discovery, Terrified

Postby ZenGinner » Sun Jun 18, 2017 6:47 pm

Juliegee:

Thanks. I am sure the shock will wear off soon.

I was thinking about adding additional D, anyway. Guess it is a good time, huh. LOL
I am doing a vegan Omega-3. But, I will increase it.
Haven't added choline, or heard of it - for the matter. But, will look in the forum, and then proceed.

My latest blood test did NOT include DHA + EPA in RBCs or oxLDL.
Should I get another one NOW? Or just supplement for a while and then test?

I do not see anything with "LDL-P" on my last profile (2014), but they have a lot of lipid information. I included a pic of the specifics (below), in case they have something responsive in them that I do not recognize, as such.

I did have the ApoB, but not since the original Boston Heart Profile
Should I worry about that one now, or later?

Test Results 2014
ApoB 125
HOMA-IR 1.1
Homocysteine 10.8

I have looked into a "Heart Scan" or Cardiac CAT Scan.
Is that the same as a “low radiation EBT” ?
Or, is EBT better?

Thanks, again for all the help. I am so grateful you all are here!
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Last edited by ZenGinner on Sun Jun 18, 2017 6:56 pm, edited 1 time in total.
KK
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Re: Vegan Newbie, Accidental 4/4 discovery, Terrified

Postby ZenGinner » Sun Jun 18, 2017 6:54 pm

Stavia:

I think panicked is a fair assessment. LOL
I am accustomed to having a pretty good grasp on my health.
This definitely blind-sided me.

Statistics & Risk: Well, probably a good thing there are not numbers. I would probably just obsess about those, too.

Coconut Oil: That is good news. I won't worry, then.

Transitioning: Yay. I will be easier if it is not overnight.

Research Links: Thanks. It is nice to know it is not all wishful thinking. I function more effectively when I can fool myself into believing that I have some modicum of control.

Primer: Priceless! Still LOTS of new ground to cover. But, at least it is broken down into digestible parts. Thanks!

Epigenetics Rule: Yay! Good excuse to get rid of the fat, anyway.

Lipids: Really???!!. Thanks. That makes me feel better.

Y'all have all been amazing. Thanks for the answers and support. This group is amazing.
KK
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Re: Vegan Newbie, Accidental 4/4 discovery, Terrified

Postby Stavia » Sun Jun 18, 2017 7:03 pm

ZenGinner, think of control more in terms of CHOICES you can make, and don't try and control the OUTCOME.
That way you are guaranteed to succeed!
Take it slow girl. There is no rush.


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