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Concerns after 23 and Me Results

Discussion in 'Memory concerns and seeking a diagnosis' started by AlmaSocks, Feb 28, 2019.

  1. AlmaSocks

    AlmaSocks New member

    Feb 28, 2019
    Hi all,

    Sorry if this is in the wrong place, I'm new to the forums but I'm having a bit of a breakdown and I don't really know anyone I can talk to about this.

    My partner bought him and I the '23 and Me' genetic health/ancestry kits when they were on offer on Amazon. His results came through a week or so ago and came back with absolutely no abnormalities or carrier status. I was somewhat expecting something similar myself.

    When mine came, the blue 'increased risk' bubble next to late onset Alzheimer's has really hit me hard. The 23 and Me app cheerfully tells me that I'm carry 2 copies of the ε4 variant in the APOE gene, associated with an increased risk of developing late-onset Alzheimer's disease.

    "Studies estimate that, on average, a woman of European descent with this result has a 28% chance of developing late-onset Alzheimer's disease by age 75 and a 60% chance by age 85."

    I'm suddenly overwhelmed by this information.... My grandmother developed Alzheimer's when she was 80 or so and my mother (67) shows early signs (it's something I would like to bring up with her at some point but that's another topic...) but I'm 27 and I can't tell you how I regret taking this stupid test. I feel resigned and I feel utterly alone and helpless.

    I know that there's no 'guarantee' and that my lifestyle will have a factor too... but I can't help feeling this overwhelming sense of dread and sadness that I'll never be able to un-know this information (well... maybe when I have Alzheimer's I'll be able to forget...). It's got horrible implications - will my partner and any children I have become my carers one day? Will I just be able to get on with life knowing this?

    I don't know if anyone else has been through anything remotely similar here? I'm not really looking for advice or assurances as I know there's not much that can be said... but I wondered if anyone else has been able to 'make peace' with their genetics... or has made good of it?

    If anything... for anyone reading this... please think twice before taking one of these genetic tests. You might not like what you find.

    Thanks in advance to all who read!
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello and welcome @AlmaSocks.

    Old age is the biggest risk factor with dementia. Lifestyle accounts for about 35% of the risk and genetics is a small risk.

    Taking these tests requires careful thought and it is always wise to consult a GP first, as you have discovered.

    I think the best advice is to consult the GP now. Maybe counselling, or even a retest, could help you.
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    Hello again, in the hope that it may help you, here's a link to the Society Factsheet on the genetics of dementia. Just click the PDF line for an easy read or to print the document.

    Genetics of dementia (405)
    PDF printable version
  4. AlmaSocks

    AlmaSocks New member

    Feb 28, 2019
    Thank you for your kind words Pete. I think a GP consultation will have to be the route I go down although I don't hold my breath that my situation will warrant counselling (on the NHS at least).

    Thank you also for the PDF - Very helpful information but sad to see that I am among only 2% of the population. Somehow if the percentage was higher it would make me feel a little more at ease about my situation. I am not sure why...

    "APOE e4 is associated with a higher risk of Alzheimer’s disease. About 2 per cent of the population gets a ‘double dose’ of the APOE e4 gene – one from each parent. This increases their risk of developing Alzheimer’s disease by about three to five times, on average. However, they are still not certain to develop Alzheimer’s disease."
  5. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    Welcome to TP from me too, @AlmaSocks. Sorry don't know anything about these genetic tests. If worries about it and about your mother's problems are making you anxious and helpless you should be entitled to counselling on the NHS. Here in Bristol there's a 1 month wait for the assessment and about another 2 months wait for the counselling, but it helped me when my partner's vascular dementia left me feeling similarly alone and depressed.
  6. AlmaSocks

    AlmaSocks New member

    Feb 28, 2019
    Thank you so much Nae - I think the timings are likely similar here in Herts. I was just unsure that they would provide it without an associated diagnosis of depression or anxiety. I appreciate the reply.
  7. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
  8. Lawson58

    Lawson58 Registered User

    And it's so important to remember that you are young, young enough that before too many years have gone by, there may well be a cure, a successful treatment or perhaps some preventative medication.

    You have many years ahead before the possibility of the onset of AD, so keep the faith and don't give up hope. Live your life well and enjoy every day. That one's for all of us.
  9. SaraKate

    SaraKate Registered User

    Dec 29, 2018
    Dear AlmaSocks - I am sorry for the shock you have had; but I think that you are worrying about a statistic rather than a prediction. It can tell you the genetic predisposition but not if it will happen for sure. I too have a high marker for Alzheimers but five years after I got the result (and was disturbed by it) I fell off my horse, broke my back and could have been paralysed. I was really really lucky. I wasn't paralysed and now I am 65 and no signs yet. I visit this site because my husband (who had no genetic history) is showing signs of cognitive impairment and we're waiting to get a diagnosis. I don't minimise your feelings of fear and confusion but do remember also that your predisposition is for late onset - that's a long time away for you. Lots of things will happen between then and now, good and bad, to you and to your family. It's probably better (if you can) to turn your mind away from something that might happen 40 years away? Or not at all? Especially as they are trialling right now gene therapy for Alzheimers and who knows what progress will be made by the time you are older. I'm not an old wise woman (God knows) but I can tell you that you're pretty young and you have so much to look forward to. Don't let this distress you - it might not be right, it might never happen, and if it does it won't happen until you have doubled your present age - it's a long way away.
    Do come back and tell us how you feel, don't worry alone. SaraKate
  10. try again

    try again Registered User

    Jun 21, 2018
    I enrolled in a trial run by recognition. I had A3/A4 which meant I qualified for further testing to see if I could be included.
    They gave me a good physical , found very high blood pressure so I had to go straight to gp. I have memory test, pysc. Evaluation, MRI and pet scan. At this point I was excluded as there was no evidence of increase in beta amyloid in my brain. Both a relief and disappointment
    My feelings on the genetic test were quite laid back as it didn't change anything and I felt it better to know so that if need be I could get things sorted.
    It may be worth signing up to a trial, I think that alzAlzheimer s website has a link and Google the one I signed up to.
    My reasoning was if I was going to get it, I may as well put it to some good. Also the fact that I would be monitored and maybe even given a drug that might help.
    It's not for everyone of course.
  11. SingsWithPugs

    SingsWithPugs Registered User

    Sep 17, 2019
    Dear AlmaSocks,
    You wrote: " I can't help feeling this overwhelming sense of dread and sadness that I'll never be able to un-know this information"

    I understand how you feel. A few days ago I was given the results of an MRI which was administered due to a problem with one-sided tinnitus and hearing loss. The MRI showed no problems with my ear, but the doctor mentioned almost casually that it showed I have "small vessel changes" in my brain. (I am 64). She just causally dropped this bombshell, and suggested I see my GP about it.

    At some level I am angry. Why did this doctor tell me about the small vessel changes? What was the point? I can't do anything to make them go away, or to stop them getting worse. I am 3 weeks into my retirement and I feel as if she has ruined the rest of my life. As you say, I can't "un-know this information", at least not until I go completely off my rocker, which presumably I will, sooner or later.
  12. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    I have "small vessel changes" in my brain.

    Probably loads of ppl do without knowing it and maybe it wont even get any worse?
  13. SingsWithPugs

    SingsWithPugs Registered User

    Sep 17, 2019
    I guess I have been freaked out by Dr. Google. When I google it I find stuff about vascular dementia. I don't find anything about it being harmless or meaningless.
  14. Peachez

    Peachez Registered User

    Jun 19, 2016
    South East England
    Dear AlmaSocks, its statistics, they are rubbish... my oncologist hated them , he said " if it's one in ten million chance, and it's you, then you are 100 % affected".
    Your other half may now get complacent, not look after himself, and fall foul of something in the process. You now have the chance to live well, take care of your health and also plan financially so you don't have to worry who is going to look after you.. IF it happens!
    Everyone makes mistakes, or takes actions they should've thought twice about. You are far from alone in that. I hope after the shock has subsided , and you have found the help you need (do the testing company not offer something?) you can be at peace with yourself.
  15. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Well, no. Google tends to do that.
    Why not go to your GP anyway? It wont do any harm.
  16. Lawson58

    Lawson58 Registered User

    Genetics obviously play a big part in our potential to develop certain diseases but that's what it is. Mostly it is potential not certainty. That is not to ignore some conditions like the breast cancer gene and some other nasties like Huntingdon's, cystic fibrosis etc.

    I am the youngest of five children. My mother died at age 45 from heart disease and my father at the age of 72, also from heart disease. Despite the potential for each of us to also develop heart disease, all my siblings are still alive with me being the baby at 75 years of age. The oldest is almost 86 years old. No one from my extended family has ever had dementia but my oldest brother has recently been diagnosed with AD.

    Even without carrying the genes, many people will develop AD by the ages that you are already aware of.
    Go to your GP and have a good chat. I feel that you are putting yourself under huge stress which may not be warranted.
  17. SingsWithPugs

    SingsWithPugs Registered User

    Sep 17, 2019
    I have an appointment with my GP next week. I'm quite nervous about it.
    Last night i went online and did a bunch of quizzes and puzzles. Trying to convince myself I haven't lost my marbles yet.

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