If you use a device running an Android version prior to 7.1.1, beginning January 11 your access from that device to this site and many others will be impaired. For details and solutions, see this topic.

emerging from lurking

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
aventura
New User
New User
Posts: 2
Joined: Fri Sep 20, 2019 1:42 pm

emerging from lurking

Postby aventura » Fri Sep 20, 2019 2:27 pm

Hi folks,

A friend told me about this site about a year ago, and I've been stopping by occasionally, really excited (and sometimes overwhelmed) by all the resources available here. Thank you to everyone who has helped create and maintain this space.

I found out that I have apoe4/apoe4 alleles in 2015 when I took the Boston Heart Health test at my doctor's suggestion. We were actually trying to find out whether I had heart disease, and I wasn't warned that I was taking a test that would acquaint me with my genetic risk factors for Alzheimer's Disease.

It was about the last thing I wanted to hear at the time. I had just separated myself from being my father's caregiver for much of 2013-2014 and set him up with caregivers in his home. I remember being told by his neurologist in 2014, he must have been a very intelligent man, because to look at the stroke damage and Alzheimer's shrinkage in his brain, she would not expect him to be doing nearly as well as he was. Funny how even the bright side from a neurologist can be profoundly depressing.

In the summer of 2016 many of you were at a conference in Boulder, Colorado, where Dale Bredesen presented his groundbreaking research on Alzheimer's. I didn't know anything about that conference, but was across town at the courthouse, where my siblings and I finally had to use the legal system to get power of attorney and medical decision making established for our father. He passed away in November 2016.

I had read Aging With Grace (published in 2001) several years previously, and was struck by author David Snowdon's advice that on an individual level (as opposed to for research in which subjects remain uninformed), testing for the apoe4 gene was not just useless but destructive, because it evoked such doom and gloom over a disease process that had no remedy.

I'm delighted to see that now there are researchers, like Bredesen, who are seeing signs of hope for preventing and even reversing Alzheimer's. No simple remedy, to be sure, but there is hope!

There are about a thousand (well, okay, maybe 20) things I'd like to share and ask you all about. But for today I'll ask about this one: I'm dealing with a large fibroid tumor. I'm in my early 50s and still cycling. I've seen a couple of things on line (sorry not going to excavate them right now) making the claim that women with apoe4 seem to have more problems with fibroids than other women. How do you evaluate this claim? It would perhaps make some sense, since the sex hormones are similar chemically to cholesterol, and perhaps (am I going out on a limb here?) also may not get cleared as effectively in women with apoe4. (Fibroid tumors grow in response to estrogen, particularly excessive estrogen.) Just wondering if any of you have dealt with this personally or read about it.

Thanks!

User avatar
Melanie R.
Contributor
Contributor
Posts: 54
Joined: Mon Jul 01, 2019 10:41 pm
Location: Vancouver, BC, Canada

Re: emerging from lurking

Postby Melanie R. » Fri Sep 20, 2019 4:08 pm

aventura wrote: There are about a thousand (well, okay, maybe 20) things I'd like to share and ask you all about. But for today I'll ask about this one: I'm dealing with a large fibroid tumor. I'm in my early 50s and still cycling. I've seen a couple of things on line (sorry not going to excavate them right now) making the claim that women with apoe4 seem to have more problems with fibroids than other women. How do you evaluate this claim? It would perhaps make some sense, since the sex hormones are similar chemically to cholesterol, and perhaps (am I going out on a limb here?) also may not get cleared as effectively in women with apoe4. (Fibroid tumors grow in response to estrogen, particularly excessive estrogen.) Just wondering if any of you have dealt with this personally or read about it.


Hello Aventura,

I want to extend to you a very warm welcome to the forum. We're so happy that you've emerged and can join in with this supportive community! We don't want you to feel overwhelmed, and to remain excited, so I've included some information below that I hope will be of use to you:

Have you had a chance to check out the Primer yet where you can find a helpful amount of information to continue to guide you in your education? This Primer is written by a Physician member. Also, our Wiki allows you to go deeper on individual topics as you continue to explore and learn.

The following section contains information about How to Get the Most out of the APOE4.info website . This gives you tips for how to subscribe to threads, quoting when you are responding to another member so they are notified of your response, and other helpful tips for navigating the forum.

I've quoted your question as another member may be able to provide some input based on their own experience or expertise.

Thank you for sharing.

Again a warm welcome to you. There is hope indeed!
Functional Medicine Certified Health Coach
Reversing Cognitive Decline for Coaches (ReCODE)

User avatar
TheresaB
Mod
Mod
Posts: 1055
Joined: Wed Feb 03, 2016 9:46 am
Location: Front Range, CO

Re: emerging from lurking

Postby TheresaB » Sat Sep 21, 2019 6:16 am

aventura wrote:I'm dealing with a large fibroid tumor. I'm in my early 50s and still cycling. I've seen a couple of things on line (sorry not going to excavate them right now) making the claim that women with apoe4 seem to have more problems with fibroids than other women. How do you evaluate this claim? It would perhaps make some sense, since the sex hormones are similar chemically to cholesterol, and perhaps (am I going out on a limb here?) also may not get cleared as effectively in women with apoe4. (Fibroid tumors grow in response to estrogen, particularly excessive estrogen.) Just wondering if any of you have dealt with this personally or read about it.


Welcome lurker, a kindred spirit, I lurked for about a year before I felt I could say anything worthwhile.

I’ve not heard of there being a connection between fibroids and ApoEε4, that doesn’t mean there isn’t one. I do know I am a 4/4 with two large fibroids. I was diagnosed with them when I was 40, I had a Uterine Fibroid Embolization to stop growth, but they’re still with me, although since changing my diet and menopause, they’ve shrunk slightly.

I've come to think my growths came from my diet and even perhaps environmental exposures. I suspect when I was younger and less discriminating about my diet, I was not insulin sensitive and unwittingly ate foods I reacted to. Insulin makes things grow -muscle, cancer tumors, and I would guess fibroids too. Of course, if as you suggest there is an estrogen connection, a diet can also introduce estrogen mimickers, for example arsenic common in rice and in chicken feed, thus chickens, and the preservative BHT found in whole grain breads and cereals. Also certain personal care products also can result in the body producing estrogen mimickers.

Another contributor was probably lectin consumption. About five years ago when I learned my ApoE4/4 status, I became a patient of Dr Steven Gundry. My initial blood test showed strong lectin sensitivity, something not correlated with being a 4/4, just from my diet. When I removed high lectin foods from my diet, my inflammation markers went down. He subsequently mentioned there being a connection between lectins and fibroids.
-Theresa
ApoE 4/4

Magda
Support Team
Support Team
Posts: 269
Joined: Fri Jul 07, 2017 9:04 am
Location: Brooklyn, NY

Re: emerging from lurking

Postby Magda » Sat Sep 21, 2019 6:34 am

aventura wrote:There are about a thousand (well, okay, maybe 20) things I'd like to share and ask you all about. But for today I'll ask about this one: I'm dealing with a large fibroid tumor. I'm in my early 50s and still cycling. I've seen a couple of things on line (sorry not going to excavate them right now) making the claim that women with apoe4 seem to have more problems with fibroids than other women. How do you evaluate this claim? It would perhaps make some sense, since the sex hormones are similar chemically to cholesterol, and perhaps (am I going out on a limb here?) also may not get cleared as effectively in women with apoe4. (Fibroid tumors grow in response to estrogen, particularly excessive estrogen.) Just wondering if any of you have dealt with this personally or read about it.

Thanks!



Hello Aventura,
Welcome to apoe4.info.

I am very sorry about your father! Thank you sharing your story with us.
I am so glad you have found Dr. Bredesen’s work and our forum.

Until now I did not know much about uterine fibroids (UF). From my quick research I found out this condition is indeed steroid hormone responsive, however, there is a lack of understanding about etiology of the condition.

UF is characterized by increased proliferation of disorder smooth muscle cells (think insulin and insulin like growth factors).
A defining characteristic of this condition is the overproduction and the disorganized fibrous nature of extracellular matrix. Furthermore, extracellular factor in this condition include increase collagens, fibronectin and proteoglycans. Some studies have found increased activation of pathways involved in the production of extracellular matrix, including transforming growth factor-β3 (TGF-β3), CD24, and insulin-like growth factor-1 (IGF-1). [1].

Being obese and overweight increases prevalence of developing uterine fibroids (states of increase growth). Age plays a role, steroid hormone, race, and some genetic factors [2].
The reviewI am referring to explains in detailed relation between steroid hormone and the condition. I am sure you are already familiar with this mechanism so I will not include the description.
What caught my attention is an explanation of cell signaling pathways and Uterine Leiomyoma (leiomyoma is a different name for this condition).
According to the study The PI3K/AKT-mTOR pathway has been identified as one of the most up regulated signaling pathways in this condition.
Activation of PI3K and mTOR pathways is necessary for estrogen-dependent cell growth in
uterine fibroids. Let me add that mTOR pathway is dietary protein sensitive. When we consume animal proteins, the pathway activates.
The two above pathways are not the only once described by the authors of the study. They in the great detail explain other pathways potentially influencing the development and the course of the condition.

I also found in the study description of the potential connection between environmental estrogens and UF. Xenoestrogens also refer to as estrogen like endocrine disrupting chemicals can alert the function of the endocrine system by binding to hormone receptors or by altering hormone synthesis and metabolism.
DDT, Bisphenol-A (BPA found in plastic), diethylstilbestrol (DES synthetic estrogen) and PCBs are all xenoestrogens and as evidence suggest are endocrine system disturbing chemicals.

Circling back to your question if Apoe4 allele predisposes to this condition, I have to say I did not find the answer. What is clear to me this condition has multifactorial etiology. Hyperinsulinemia definitely plays a role as well as xenoestrogens, race and age.
Helping the liver to clearestrogen metabolites, improving methylation and action of COMT enzyme may be one approach.

I hope this is a little bit helpful.
Please do not hesitate to post if more concerns arise.

Magda
Functional Medicine Certified Health Coach & MS Clinical Nutrition Student
IFM/Bredesen Trained, Reversing Cognitive Decline

rat8the8rat
Contributor
Contributor
Posts: 17
Joined: Mon Jul 17, 2017 9:05 pm

Re: emerging from lurking

Postby rat8the8rat » Sat Sep 21, 2019 11:40 am

Hi Lurker. ;) I’ve been on for about 2 years and have written very little. But the last two years have been a horrible win with my mom‘s decline from Alzheimer’s and then death and then the adjustment over this past year.

I have not seen anything about the apoe4 allele having any connection to fibroid tumors. for some reason, I think that that study or research has probably never been done. Based on your age, I would think you might be going through perimenopause or early menopause. And your hormones do change during those times and sometimes you are estrogen dominance, and I speak from experience with myself. I had never had any trouble with fibroids but had one during perimenopause, which was found during an ultrasound and it wasn’t really giving me any trouble. They told me that it might go away on its own once I was in menopause and my estrogen levels were lower. And it did.

A friend of mine had a similar problem during perimenopause when her progesterone levels dropped, which I was told is what usually happens first and the estrogen levels that are dominant, and hers also went away when her estrogen levels dropped as she went into menopause and she was no longer estrogen dominant.

So you might look into that and check with your doctor. As you know with Dr. Bredeson’s protocol maintaining Optimal hormones is very important to provide the brain with what it needs. So since perimenopause I have taken bio identical hormones which include estrogen and progesterone. I have a doctor that’s a specialist in bio identical hormones and so I only take the amounts to maintain optimal levels for health and for my brain, and I don’t take so much estrogen that I’m estrogen dominance to where that would feed any fibroids. And I haven’t had any problems. I also take testosterone, which is also bio identical.

It sounds like you’re quite active with cycling. And of course the exercise is so very good for your brain.




Sent from my iPhone using Tapatalk

JudyH
Contributor
Contributor
Posts: 49
Joined: Thu Dec 27, 2018 4:30 pm

Re: emerging from lurking

Postby JudyH » Thu Sep 26, 2019 7:58 pm

My mother died at 42 of a heart attack as did her mother also at 42. I am e3/e4 and will always wonder if they were e4/e4. When my mother died, the medical examiner ordered an autopsy. In his words, "42 year old women who look like this (5'8" and 135 lbs) do not drop dead of heart attacks." Interestingly enough, the only findings on her autopsy other than she had significant arteriosclerosis and died of heart disease was that she had uterine fibroids. To my knowledge, I do not have any. Just another data point for you.
e3/e4
No family history of AD, they drop dead of heart attacks in their early 40's!
Celiac and Hashimotos

aventura
New User
New User
Posts: 2
Joined: Fri Sep 20, 2019 1:42 pm

Re: emerging from lurking

Postby aventura » Tue Jan 14, 2020 9:36 am

Thank you all for sharing your information and support.

On the advice of others in the ApoE4 community, I have recently had these tests run: the Kraft Prediabetes Profile and the Coronary Artery Calcification scan. Results are still pending for the Kraft Prediabetes Profile, which I am running to get a more in-depth look at what is going on with my blood sugar and insulin response. Just got back the results from the CAC scan. No evidence of coronary artery calcification. Sigh of relief there.

I am 51 years old, height of 5'9" and weight of 135 pounds. Looks on the outside like I should be at low risk for heart disease, but being an ApoE4/ApoE4 carrier, and having lipids levels that become elevated whenever my thyroid levels become suboptimal (I have Hashimoto's Disease and take synthetic thyroid hormones for T3 and T4), and having been classified as pre-diabetic a few years ago (now with A1Cs in the normal range with reduction in carbs and taking berberine)...just wanted a look into the heart of the matter, ha ha! So what a profound relief to learn I do not at this time show evidence of atherosclerosis.

I am about to embark on a ketogenic diet, and with my doctor am using the results of the two tests above to help guide the parameters of what I should be eating more of and less of.

I'll keep you posted!

efcole
Contributor
Contributor
Posts: 33
Joined: Sun Jul 08, 2018 8:11 am

Re: emerging from lurking

Postby efcole » Tue Jan 14, 2020 11:40 am

Hi Aventura,

I was drawn to this thread by your subject line - emerging from lurking. That's how I felt too when I finally joined about 1.5 years ago. It makes me smile to read the responses to your posts that confirm that you (and I) are not the only ones who were lurkers for a good amount of time. I so relate to the emotions you describe in finding this wonderful group.

Keep us posted on how things go with your start on a ketogenic diet.

Best wishes,
Emily


Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 23 guests