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