New Member from Hamburg, Germany

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
pinkgothic
Contributor
Contributor
Posts: 9
Joined: Tue Jun 25, 2019 10:34 am

New Member from Hamburg, Germany

Postby pinkgothic » Tue Jun 25, 2019 11:01 am

Hi, just wanted to check in here and thank you for existing. :)

I'm currently 34 years old and recently (last two years especially) struggled badly with my cognition, deteriorating to the point where I was constantly depressed, where my light and sound sensitivity were dialled up to eleven, where my creativity had died away completely, and I had poor sleep quality. [ Edit: In an impressive display of pure irony, I forgot to mention memory problems. :P Would forget things that I'd decided five seconds earlier. This is much better now! ] I had to escalate the matter to a(n initially very dismissive) neurologist.

The current diagnosis is a vitamin B12 deficiency, but I assume this is a warning shot across the bow, since I still struggle finding the right words for things (used to be a hobby author, can currently barely string together anything that sounds marginally poetic, nor come up with good metaphors for things - #firstworldproblems, yes, but it's really noticeable for me and it has me worried).

That said, vitamin B12 supplements entirely on their own have been a fantastic help. I already feel about fifteen years younger. I can sleep through birdsong again, my creativity is back (even if the results aren't great, it lets me enjoy my life again), and I can concentrate on my book while sitting in a train and people are talking. My quality of life has really gone up.

I recently read The End of Alzheimer's and am starting to, even without a diagnosis, tweak some of those dials. I'm trying to get onto the Ketoflex 12/3 diet (which aligns a lot with what I want to be eating, anyway, but due to the vitamin B12 deficiency I spent the past two and a half months eating primarily a meat-based diet, since I was panicking about it) and as I'm very convinced that I have a leaky gut am trying to actively fix that (bone broth, etc).

I'm probably going to be mostly invisible here since my case is strange, borderline pre-symptomatic, and I don't have any lab reports to cite yet (since I live in Germany I'm not even sure where to get them, honestly, but it's on my to do list), but I mostly wanted to reveal this account is a real person, and express my gratitude that this place exists. :)
Last edited by pinkgothic on Tue Jun 25, 2019 3:53 pm, edited 1 time in total.
Born 1984 | Diagnosis: Vitamin B12 deficiency, on supplements | Genetics: Unknown
Cognitive impairment: Minor trouble with words | Goals: Ketoflex 12/3 diet, genetic testing, getting a cognoscopy.

User avatar
Davida
Contributor
Contributor
Posts: 67
Joined: Tue Feb 19, 2019 4:47 pm

Re: New Member from Hamburg, Germany

Postby Davida » Tue Jun 25, 2019 1:51 pm

pinkgothic wrote:Hi, just wanted to check in here and thank you for existing. :)

I'm currently 34 years old and recently (last two years especially) struggled badly with my cognition, deteriorating to the point where I was constantly depressed, where my light and sound sensitivity were dialled up to eleven, where my creativity had died away completely, and I had poor sleep quality. I had to escalate the matter to a(n initially very dismissive) neurologist.

The current diagnosis is a vitamin B12 deficiency, but I assume this is a warning shot across the bow, since I still struggle finding the right words for things (used to be a hobby author, can currently barely string together anything that sounds marginally poetic, nor come up with good metaphors for things - #firstworldproblems, yes, but it's really noticeable for me and it has me worried).



Hi pinkgothic and welcome to the Apoe4 site! I'm so glad you posted and shared a bit of your story with us. Sorry to hear about some of the struggles and frustrations you have been experiencing. Not being able to use the skills that once came so easily must feel overwhelming and scary at times.

That being said, I think you will find here a group of people traveling many paths, some even similar, mostly a group that is compassionate, caring, supportive and willing to share the knowledge they have acquired. So don't hesitate to ask more questions.

I'm glad to hear that the quality of your life has improved and that you are continuing to be proactive with your health care. To gather even further information on the Apoe4 gene and additional prevention strategies for cognitive decline, a good place to start is our Primer, if you haven't already. Wiki, also has more in-depth discussions on topics of interest. This thread may assist you with finding practitioners, labs, and diets to name a few of the things. Also, going on Our Stories may lead you to a posting from someone living in Germany.

Hope that helps some, I wish you the best and thanks again for joining the community.

Be well, Davida
Davida
FMCHC
Reversing Cognitive Decline for Coaches Certification 2018

pinkgothic
Contributor
Contributor
Posts: 9
Joined: Tue Jun 25, 2019 10:34 am

Re: New Member from Hamburg, Germany

Postby pinkgothic » Tue Jun 25, 2019 1:59 pm

Thanks for the links and the warm welcome, Davida! I'll definitely be reading more and more of this site in the coming weeks and months and appreciate the nudge in the right directions.

I really appreciate all the information you folks have put together. :) Thanks for that!
Born 1984 | Diagnosis: Vitamin B12 deficiency, on supplements | Genetics: Unknown
Cognitive impairment: Minor trouble with words | Goals: Ketoflex 12/3 diet, genetic testing, getting a cognoscopy.

Fiver
Senior Contributor
Senior Contributor
Posts: 526
Joined: Wed Feb 01, 2017 12:51 pm

Re: New Member from Hamburg, Germany

Postby Fiver » Tue Jun 25, 2019 2:24 pm

Hi pinkgothic. I'm just an occasional contributor here but I wanted to say that I'm very glad that fixing the B12 deficiency seems to have helped so much. I'm sure those symptoms were scary! Did your doctors just see your levels were low and add the supplement, or did they figure out what might have been causing the underlying problem? It's usually good to figure out the root cause, when it's possible. Anyway, welcome!
Four relatives with AD. Concerned, but hopeful. Introverted, but will talk about science.

pinkgothic
Contributor
Contributor
Posts: 9
Joined: Tue Jun 25, 2019 10:34 am

Re: New Member from Hamburg, Germany

Postby pinkgothic » Tue Jun 25, 2019 3:48 pm

Fiver wrote:Hi pinkgothic. I'm just an occasional contributor here but I wanted to say that I'm very glad that fixing the B12 deficiency seems to have helped so much. I'm sure those symptoms were scary! Did your doctors just see your levels were low and add the supplement, or did they figure out what might have been causing the underlying problem? It's usually good to figure out the root cause, when it's possible. Anyway, welcome!


Unfortunately they only noticed the level was low and left it at that. I have a pretty good idea what the underlying cause is - my family has a history of irritable bowel syndrome, i.e. our bowels are very picky eaters. ;) Of course, that's not as concrete a cause as I'd like, since it doesn't tell me what dials to twist and what buttons to punch, but I hope easing myself into Ketoflex will help (what with oils increasing absorption). :)

The symptoms were not nearly as scary as they 'should' have been. I didn't realise how bad I'd gotten until I got better! When I went to the neurologist, it was because I had really poor sleep quality and high sound sensitivity.

All the other associated problems - then-mild depression, light sensitivity, trouble concentrating, I didn't really identify as problems. I knew I had a severe depression in 2017, but I thought I'd gotten completely out of that. The neurologist wanted me to see a psychologist, suspecting some kind of deep seated issues I needed to deal with. She was just dismissing me with "so, just so you know, you don't need to worry about dementia" and "your sleep is fine, most people don't need eight hours of sleep, much less nine, six is perfectly sufficient" when she paused and decided, "actually, you know what? Go get tested for folic acid, vitamin B6, vitamin B12, and vitamin D".

(Results were fine for folic and B6, less than HALF of the minimum value of B12, no vitamin D. So I take B12 and D3 supplements.)

That off-hand comment probably saved my sanity. Not a very heartening tale, unfortunately, but that's how things are. I reckon I'm too young that doctors think I'm anything other than an annoying hypochondriac.

In the first two weeks on vitamin B12 supplements, I noticed some really striking changes. At one point, my ears "popped" while two colleagues were having a conversation right next to me - that's only happened once! It was the same tonal shift you'd expect with ear-popping, without the physical sensation of ear-popping. I can't swear that was the moment I could start ignoring other people talking and concentrate on my work, but I like to think it was my auditory sense going "OH! RIGHT! THIS is how that works!". I actually jolted when that happened.

I also had the distinct impression the lighting in the bathroom had been changed, when it hadn't. Same with my visual perception in general, though I couldn't tell you what changed - it felt crisper, but any attempt I made at actually comparing it to how I used to see the world failed to turn up any differences. Probably another one of those attention/focus changes.

Beneficial for my relationship: I also no longer want to murder my primary for watching talk shows all the time. (Well, maybe a little. But I can bear it for a while.)

Most notably, no depression at all any more. I was previously trying to consciously train myself to hold onto as much optimism as I could (since I always found it beneficial in many ways) - now, on supplements, I can't save myself from optimism! My personality's returned. It's wonderful.

My memory (formation) seems to be completely back to normal, although I see not to the point that I mentioned it in my intro post. In 2017, in the midst of severe depression and at the cusp of my vitamin B12 deficiency (made worse by several attempts at vegetarian diets, always aborted for indistinct feelings of "this is making me feel worse, not better"), I sometimes found myself making a decision and then five seconds later remembering only that I'd made a decision, not what it was. That was really bad.

Memory recall is still a bit dodgy, but memory formation is back to normal. For example, I remember from yesterday that I wanted to look up a song with some specific lyrics I'd heard in a restaurant, but I've not actually done this yet because I keep forgetting to do it. I still remember the lyrics fine. :P

Anyway, I'm very much at the beginning of my journey. I need to assess what my exact risk profile is - and also shuffle as much information as possible to my mum, who's been suffering cognitive issues lately (she's 70). Vitamin B12 is also helping her, but not as much as me, so I appreciate any additional information I can find on this topic. I recommended the (German version of the) book The End of Alzheimer's to her, but there's a real chance she can't parse it all even if she were fully willing, so the sooner I figure out what works for me, the sooner I can help her out! (We're very alike.) She's a remarkable woman and if I can improve her quality of life, I'll be very happy.

Thanks for the warm welcome!
Born 1984 | Diagnosis: Vitamin B12 deficiency, on supplements | Genetics: Unknown
Cognitive impairment: Minor trouble with words | Goals: Ketoflex 12/3 diet, genetic testing, getting a cognoscopy.

Matisse
Contributor
Contributor
Posts: 48
Joined: Sun May 04, 2014 4:44 pm

Re: New Member from Hamburg, Germany

Postby Matisse » Tue Jun 25, 2019 5:20 pm

pinkgothic wrote:Hi, just wanted to check in here and thank you for existing. :)

I'm currently 34 years old and recently (last two years especially) struggled badly with my cognition, deteriorating to the point where I was constantly depressed, where my light and sound sensitivity were dialled up to eleven, where my creativity had died away completely, and I had poor sleep quality. [ Edit: In an impressive display of pure irony, I forgot to mention memory problems. :P Would forget things that I'd decided five seconds earlier. This is much better now! ] I had to escalate the matter to a(n initially very dismissive) neurologist.

The current diagnosis is a vitamin B12 deficiency, but I assume this is a warning shot across the bow, since I still struggle finding the right words for things (used to be a hobby author, can currently barely string together anything that sounds marginally poetic, nor come up with good metaphors for things - #firstworldproblems, yes, but it's really noticeable for me and it has me worried).

That said, vitamin B12 supplements entirely on their own have been a fantastic help. I already feel about fifteen years younger. I can sleep through birdsong again, my creativity is back (even if the results aren't great, it lets me enjoy my life again), and I can concentrate on my book while sitting in a train and people are talking. My quality of life has really gone up.

I recently read The End of Alzheimer's and am starting to, even without a diagnosis, tweak some of those dials. I'm trying to get onto the Ketoflex 12/3 diet (which aligns a lot with what I want to be eating, anyway, but due to the vitamin B12 deficiency I spent the past two and a half months eating primarily a meat-based diet, since I was panicking about it) and as I'm very convinced that I have a leaky gut am trying to actively fix that (bone broth, etc).

I'm probably going to be mostly invisible here since my case is strange, borderline pre-symptomatic, and I don't have any lab reports to cite yet (since I live in Germany I'm not even sure where to get them, honestly, but it's on my to do list), but I mostly wanted to reveal this account is a real person, and express my gratitude that this place exists. :)


May I ask what your lab result was for the B12 (and how measured ) and which form of B12 you're taking?

pinkgothic
Contributor
Contributor
Posts: 9
Joined: Tue Jun 25, 2019 10:34 am

Re: New Member from Hamburg, Germany

Postby pinkgothic » Tue Jun 25, 2019 5:28 pm

Matisse wrote:May I ask what your lab result was for the B12 (and how measured ) and which form of B12 you're taking?


I had something like 145 pg/ml on the blood test (don't have it at hand right now, but can check the exact value if you like and report back!). For reference, minimum on the lab report that I should have had was 300 pg/ml.

I'm taking cyanocobalamin. I'm thinking of switching to methylcobalamin, but pharmacies here don't seem to stock that by itself (and I can't take general vitamin B supplements because it would make my B6 levels toxic), so I'm considering just ordering some off the internet. Haven't actually done that yet, and since cyanocobalamin seems to be working am not in a strong rush to switch.
Born 1984 | Diagnosis: Vitamin B12 deficiency, on supplements | Genetics: Unknown
Cognitive impairment: Minor trouble with words | Goals: Ketoflex 12/3 diet, genetic testing, getting a cognoscopy.

User avatar
Sara
Support Team
Support Team
Posts: 232
Joined: Mon Jul 03, 2017 4:44 pm
Location: Between PA and FL
Contact:

Re: New Member from Hamburg, Germany

Postby Sara » Tue Jun 25, 2019 6:10 pm

pinkgothic wrote:Hi, just wanted to check in here and thank you for existing. :)

Hi pinkgothic and welcome again to the apoe4.info site! What an interesting situation and write-up you presented. Kudo's to you for all the steps you have taken to reverse your situation and prevent further repercussions. Your progress is remarkable. We are her to support you on your journey so let us know how we can help you along the way. Kind Regard!
Certified ReCODE Practitioner/Health Coach
MBA, Functional Medicine Certified Health Coach, National Board Certified Health & Wellness Coach
Supporting loved one diagnosed with AD

pinkgothic
Contributor
Contributor
Posts: 9
Joined: Tue Jun 25, 2019 10:34 am

Re: New Member from Hamburg, Germany

Postby pinkgothic » Tue Jun 25, 2019 6:30 pm

Sara wrote:Hi pinkgothic and welcome again to the apoe4.info site! What an interesting situation and write-up you presented. Kudo's to you for all the steps you have taken to reverse your situation and prevent further repercussions. Your progress is remarkable. We are her to support you on your journey so let us know how we can help you along the way. Kind Regard!


Thanks for the welcome!

I reckon my age is both a curse and a blessing here. Curse in the sense that how in god's name did I nearly get dementia before even hitting 40 years of age?! That's not normal, so something's seriously wrong. But the 'blessing' part is that I can probably bounce back from it fully with only a little effort at this point in time, and can focus mostly on preventive measures from this point onwards.

In a way, I got really lucky - whatever the exact underlying cause might be for me, I got a nice, clear warning shot, and a good bandaid to patch myself up while I contemplate the consequences. Not everyone has the benefit of an early warning.

(I joke I'm a member of the Church of Cobalamin now, by the way, since I keep recommending it left and right to anyone with symptoms even remotely like mine, since overdosing on B12 doesn't really happen, so it's pretty safe to experiment with. Already helped two people with this, hopefully going to help a lot more.)
Born 1984 | Diagnosis: Vitamin B12 deficiency, on supplements | Genetics: Unknown
Cognitive impairment: Minor trouble with words | Goals: Ketoflex 12/3 diet, genetic testing, getting a cognoscopy.

pinkgothic
Contributor
Contributor
Posts: 9
Joined: Tue Jun 25, 2019 10:34 am

Re: New Member from Hamburg, Germany

Postby pinkgothic » Thu Jun 27, 2019 6:27 pm

Just an update (not expecting comments on this, just felt appropriate to update):

Got a lab test for vitamin B12 back today. I used the opportunity to start investigating how to get a cognoscopy (even if I'm "too young" for one), will know more next week, they're checking what they can check.

My B12 values are up from 142 ng/l to 311 ng/l. This is on a heavy meat diet and supplements, so I'm going to apply More Dakka on the supplement side, but dial back on the meat, and see what happens. Going to have another lab test in September, focus is on vitamin D, but I'll also let them test B12 again (and hopefully a host of other cognoscopy attributes).

I've been doing a good job for about a week now in dialling back on my gluten. What surprised me is that even though it's not been my focus, I've apparently also dialled back enough on my carbs that I started getting keto flu (symptoms started Sunday and peaked yesterday). I may already be over it, though, I feel pretty good right now.
Born 1984 | Diagnosis: Vitamin B12 deficiency, on supplements | Genetics: Unknown
Cognitive impairment: Minor trouble with words | Goals: Ketoflex 12/3 diet, genetic testing, getting a cognoscopy.


Return to “Our Stories”

Who is online

Users browsing this forum: Deb, Lou1939 and 6 guests