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I’m new here

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
RCMann
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I’m new here

Postby RCMann » Mon Feb 26, 2018 11:50 am

Hi, my name is Rose and I received my 23 & Me results yesterday. Lucky me, I have e4/e4. But the timing is perfect because I have my regular 6 month check up in two days. I’m a 63 year old, female, breast cancer survivor. Unfortunately, when asked about family history of Alzheimer’s I have to defer because my Mom was 51 when she died from cancer and my Dad passed at age 33 of emphysema and heart disease. However, all of my Mom’s sisters experienced some form of dementia. Can anyone share their experiences of telling their Dr the results of the test? I have been journaling my experiences with forgetfulness and zoning out for over 6 months. How do Dr’s receive this info? Thanks for this forum.

Lucy5
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Re: I’m new here

Postby Lucy5 » Mon Feb 26, 2018 1:57 pm

Hello Rose and welcome from another E4/4 gal in her 60s. You have lots of company in this community as there are quite a few of us who share the 4/4 gene with you, discovering the "good" news in a variety of ways. Some of us, like me, found out via a routine yearly lab test, while others - sometimes inadvertently - through their interest in learning more about their ancestry.

Since you just learned your result from 23andme (and with your Dr appt in a couple days), you may want to first consider if you have any reservations about having your E4 status included in your medical records; the potential issue being qualifying for long term care should one need it at some point down the road. Regarding how to discuss your new E4 knowledge, we've found that many general practitioners are still not familiar with the Apoe4 gene (but are sometimes willing to learn more about it in order to provide better care for their patients ). Since my doctor knew my result before I did, I can't offer you personal insight as to how to discuss your E4/4 staus with your doctor should you choose to do so, but perhaps others here will jump in and share their story. In any case, when you discuss your recent cognition concerns with your physician, that should lead him/her to look into any possible medical issues and/or lifestyle practices (ie: poor sleep, stress, etc) that might be factors.

Since you just found us, you may not have had a chance to take a look at our site Primer. It's a wonderful resource about this gene of ours and is written by a member practicing physician. It offers step-by-step strategies to improve and maintain overall health and helps prioritize them. We also have a website search function located on the upper right corner of this page in the 3 vertical dots next to your name.

As you have more questions, please ask away, Rose. This is a supportive community and we're all here to help each other. Let us know how you're coming along when you have time...all the best, Lucy
Last edited by Lucy5 on Mon Feb 26, 2018 7:28 pm, edited 1 time in total.

NF52
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Re: I’m new here

Postby NF52 » Mon Feb 26, 2018 4:41 pm

RCMann wrote:Can anyone share their experiences of telling their Dr the results of the test?


HI Rose,
What a lovely name! Like Lucy5 and you, I too am a lucky 4/4 who is almost 66. I found out from 23 & me 4 years ago. At the time, we had just moved to a new state, and hadn't yet selected a doctor and there was the whole "WHAT!" factor for a good year (I didn't find this site until 2016.) After a get-to-know-you meeting with my new doctor, and a few urgent care type visits, I told him about the Apoe 4/4 but asked him not to put it into my records, which he easily agreed to keep private.
As Lucy5 said, he wasn't very familiar with it, and was honest about what our insurance would and wouldn't cover. More important than him knowing about ApoE 4 (by that time I had done a lot of reading on Google Scholar), was his willingness to spend 45 minutes talking about options after I found out I had sky-high LDL particle numbers and again when I got my Lp(a) results. (I paid for those tests because my dad died at 67 from coronary artery disease.) He spent a long time talking about the difference between "biomarkers" (LDL-P and Lp(a), ApoE 4) and "clinical signs" of disease (like coronary calcium plaques), lifestyle factors and actual bad outcomes. It was incredibly reassuring to have him say, "just because you have Apoe 4/4 and LDL-P and Lp(a) doesn't mean you are destined for cardiac arrest in 2 years, or dementia in 5 years." I hope your doctor has been a great support through your breast cancer journey, and will be with this also.
So I think it comes down to what your relationship is with your doctor, and what you hope to gain from the doctor having this knowledge. Since I ended up enrolling in a prevention study, my doctor ended up needing to send records to the study site, so would have learned then. I know if my cognitive status should change, he will be supportive. But I don't expect him to be a functional medicine doctor and to offer very specific recommendations right now.
Final bit of advice: My husband and I both purchased long-term care insurance about 8 years ago through his employer and continue to pay the premiums not that we're retired. I would recommend thinking about whether you want to get into a LTC insurance program before you tell your doctor. Right now, under the GINA act [http://ginahelp.org/] you cannot be discriminated against because of genetic information for health insurance, but that's not true for long-term care insurance:
As of the date this resource was written (May 2010), GINA’s protections for insurance apply only to health insurance. They do not apply to life, long-term care, or disability insurance. Some state laws may apply to these types of coverage. Check with your state insurance commissioner’s office for more information.
[Emphasis added]

And as for "zoning out and forgetfulness"--that may simply be some subjective sense that your focused and sustained attention (to reading, listening, etc) and your "free recall" (remembering grocery items without a list; remembering someone's name out of context) is less than when you were 45. That's not necessarily anything to do with ApoE 4--in my humble opinion as someone who used to text kids' memories and worked with survivors of traumatic brain injury. Ask yourself: "Do I remember this information with a cue? Do I recognize information that I previously learned?" "Can I pay attention to pertinent information and repeat it back right away, and the important parts 5 minutes later?" If so, I think you'd probably be well within the normal range of most cognitive tests of attention, auditory and visual memory.

As Lucy5 said, feel free to ask more questions, or just to vent. We're are stronger together.
4/4 and still an optimist!

Anna
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Re: I’m new here

Postby Anna » Mon Feb 26, 2018 5:49 pm

Hi Rose! You will find that there are many of us here who share your "luck." I'm glad you found us :) I am in my 50's and learned that I was 4/4 just over a year ago and took the news quite hard. I too was concerned about my brain fog. However, a series of lab tests in the past year have unveiled many other likely causes -- chronic infections, nutrient deficiencies, undertreated hypothyroidism, etc. Insomnia certainly wasn't helping either. So try not to panic about the forgetfulness that you have been documenting!

I have been cautious about not letting my genetics get into my medical record. I have not told any of my conventional doctors about my ApoE status, but I did tell my functional medicine doctor, who I started seeing soon after obtaining my results. I told this doctor only because I trust that she will respect my desire to keep this information out of my record and because it seemed important so that, while working on current health issues, we will be on the same page as to the bigger goal of preventing negative effects of this genotype. I have heard of cases in which phrases like "memory problems" in the medical record prevented patients from obtaining long-term care insurance. "Brain fog" might be safer than "memory problems," but another option is to first take the time to learn more about ApoE4 and determine what tests you want to request. I think many conventional doctors will have no idea what tests are appropriate. I did consult with a hematologist about my hereditary hemochromatosis, so that is in my medical record. The net result is that I now have to get a doctor's order to donate blood (in spite of a normal ferritin level); I can't just do it on my own.
~Anna
4/4 but so much more

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ZenGinner
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Re: I’m new here

Postby ZenGinner » Mon Feb 26, 2018 6:47 pm

Welcome! I am a 4/4, too. Found out about a year ago, accidentally. Had the Boston Heart Profile done. Was Googling information based on that profile, as discovered the association. This group kindly supported me until I was off that ledge. LOL

Interestingly, my doctor (the holistic preventative doctor that ordered the Boston Heart Profile) had no idea that the 4/4 in the BHP was the same 4/4 that was called the "AD Gene." I was the one that informed, her. She was incredulous. She looked at my records in the BHP, and looked at the gene info. She was definitely in agreement that she would NOT add that aspect to my medical record. (As a note, she was also very frustrated that she had been to 5 BHP trainings, and they had NEVER mentioned the association with Alzheimers.) The good news: she is and was very supportive. I had the list of the blood tests (that the kind people on here provided) and she ordered them all. She also asked me for the website for this group, saying she wanted to read up on the information.

So, some docs are really open to it, even if that is not their gig. Feel it out.

Glad you found this group. I have found it to be quite the relief.

K
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