Filled with anxiety about my 4/4 status

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Jaxiam
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Filled with anxiety about my 4/4 status

Post by Jaxiam »

Hi Team APOE4!

Hope you've all had a wonderful weekend!

Some background on how I found my way here: I took a 23andMe test about a year ago to learn more about my ancestry — wasn't particularly interested in the health aspect of it, but the report came as part of the package. I noticed that I was at increased risk for LOAD, but didn't dwell too much on it at the time. It wasn't entirely shocking for me as my paternal grandmother was diagnosed with AD in her late 70s/early 80s, so I knew it ran in the family. (Interestingly, I haven't had any other great-grandparents or grandparents who were diagnosed with AD, and most lived into their late 70s, 80s, and even 90s! My parents, who are in their late 60s, are sharp as a tack and show absolutely no signs of cognitive decline.)

Recently, I watched Chris Hemsworth's new show on longevity, "Limitless." In it, he was told that he was a 4/4 — like me. The reaction was quite serious on the show and frankly, it caught me off-guard. I immediately began to panic and spiraled into an anxiety vortex — especially after Googling 4/4 and reading some of the "news" and statistics around it. One statistic I found said that 4/4s had a 91% chance of developing AD by 68 (I now understand that study is no longer accurate or relevant, but it certainly sent me into a tailspin!).

To be quite forthright: I'm scared and deeply afraid for what the future holds. I'm having difficulty sleeping at night, and can't think of anything else but my 4/4 status and what it will mean for my husband and daughter in the future. I've overanalyzed my lifestyle and past habits to death, and have beat myself up for stupid decisions I made when I was in my 20s and 30s (mostly around pretty heavy binge drinking).

The positives:
• I'm 43 y/o — I have some additional time on my side to make changes.
• I've been incredibly physically active for most of my life — triathlons, marathons, CrossFit, spinning, yoga, step classes, krav maga — you name it! I love to exercise.
• Since my early 20s, I've eaten relatively healthy (of course, indulging every now and again, but not regularly). I've been gluten-free before most people knew what that was, and have mostly followed a Paleo/Keto style diet.
• I have normal/bordering on low blood pressure (110/65), no signs of diabetes, and pretty normal cholesterol (usually fluctuates between 190-220, but mostly because my HDL is high — usually in the 90-100 range).
• I pursued education heavily in my 20s — I have 2 Bachelors degrees and a Master of Science.
• I work full-time in a challenging career writing, editing, and managing content for tech companies. Plus, I freelance write for a variety of publications on different topics. Try to keep my mind moving and learning!
• No head injuries that resulted in a concussion or blacking out. I did fall on my head in my early 30s — the fall caused me some concern (I felt tingling in my extremities afterward), but I went to the hospital and everything checked out a-okay.
• Never smoked or used drugs, aside from only very recently taking cannabis to help me sleep at night.

The possible negatives:
• Lots of binge drinking in my 20s and 30s.
• Difficulty sleeping despite my best sleep hygiene efforts. I can get to sleep very easily, but will wake up after 3 hours and cannot get back to bed without a sleep aid. For this, I use a medical cannabis tincture of 9:1 THC/CBD and it works like a charm! But now I'm worried that using cannabis to help me sleep might actually be hurting me.
• Heavy plaque build up in my mouth due to genetics — not through lack of dental care. I try to keep it in check by going to the dentist four times a year for cleanings, along with typical good dental hygiene practices.
• Took the VCR test as part of the PreCode assessments and found that I was positive. Another thing to freak out and worry about!
• Very anxiety-prone (as you can tell by this post!).

I guess what I'm looking for is positivity and reassurance, along with any stories, advice, and tips for navigating this scary new path. I keep thinking I have what may be the beginnings of AD (especially when I can't remember the name of someone I met briefly at a party or forgot the name of a movie I watched a few months ago). I'm also deeply afraid to take a cognitive assessment for fear that it'll confirm all of my anxieties.

Any words of calming encouragement for someone who's spiraling after finding out their 4/4 status?
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Re: Filled with anxiety about my 4/4 status

Post by Tincup »

Jaxiam wrote: Sun Dec 04, 2022 4:18 pm Any words of calming encouragement for someone who's spiraling after finding out their 4/4 status?
Hi Jaxiam,

Welcome! On sleep, see this post as well as the post linked in it for ideas on getting back to sleep without taking anything.

For calming encouragement, see my posts in this thread.

Sounds like you are doing a lot of things right - that is wonderful!.

I am a 3/4 and am married to a 4/4.
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Re: Filled with anxiety about my 4/4 status

Post by Goldygirl »

Jaxiam wrote: Sun Dec 04, 2022 4:18 pm Hi Team APOE4!

Hope you've all had a wonderful weekend!

Some background on how I found my way here: I took a 23andMe test about a year ago to learn more about my ancestry — wasn't particularly interested in the health aspect of it, but the report came as part of the package. I noticed that I was at increased risk for LOAD, but didn't dwell too much on it at the time. It wasn't entirely shocking for me as my paternal grandmother was diagnosed with AD in her late 70s/early 80s, so I knew it ran in the family. (Interestingly, I haven't had any other great-grandparents or grandparents who were diagnosed with AD, and most lived into their late 70s, 80s, and even 90s! My parents, who are in their late 60s, are sharp as a tack and show absolutely no signs of cognitive decline.)

Recently, I watched Chris Hemsworth's new show on longevity, "Limitless." In it, he was told that he was a 4/4 — like me. The reaction was quite serious on the show and frankly, it caught me off-guard. I immediately began to panic and spiraled into an anxiety vortex — especially after Googling 4/4 and reading some of the "news" and statistics around it. One statistic I found said that 4/4s had a 91% chance of developing AD by 68 (I now understand that study is no longer accurate or relevant, but it certainly sent me into a tailspin!).

To be quite forthright: I'm scared and deeply afraid for what the future holds. I'm having difficulty sleeping at night, and can't think of anything else but my 4/4 status and what it will mean for my husband and daughter in the future. I've overanalyzed my lifestyle and past habits to death, and have beat myself up for stupid decisions I made when I was in my 20s and 30s (mostly around pretty heavy binge drinking).

The positives:
• I'm 43 y/o — I have some additional time on my side to make changes.
• I've been incredibly physically active for most of my life — triathlons, marathons, CrossFit, spinning, yoga, step classes, krav maga — you name it! I love to exercise.
• Since my early 20s, I've eaten relatively healthy (of course, indulging every now and again, but not regularly). I've been gluten-free before most people knew what that was, and have mostly followed a Paleo/Keto style diet.
• I have normal/bordering on low blood pressure (110/65), no signs of diabetes, and pretty normal cholesterol (usually fluctuates between 190-220, but mostly because my HDL is high — usually in the 90-100 range).
• I pursued education heavily in my 20s — I have 2 Bachelors degrees and a Master of Science.
• I work full-time in a challenging career writing, editing, and managing content for tech companies. Plus, I freelance write for a variety of publications on different topics. Try to keep my mind moving and learning!
• No head injuries that resulted in a concussion or blacking out. I did fall on my head in my early 30s — the fall caused me some concern (I felt tingling in my extremities afterward), but I went to the hospital and everything checked out a-okay.
• Never smoked or used drugs, aside from only very recently taking cannabis to help me sleep at night.

The possible negatives:
• Lots of binge drinking in my 20s and 30s.
• Difficulty sleeping despite my best sleep hygiene efforts. I can get to sleep very easily, but will wake up after 3 hours and cannot get back to bed without a sleep aid. For this, I use a medical cannabis tincture of 9:1 THC/CBD and it works like a charm! But now I'm worried that using cannabis to help me sleep might actually be hurting me.
• Heavy plaque build up in my mouth due to genetics — not through lack of dental care. I try to keep it in check by going to the dentist four times a year for cleanings, along with typical good dental hygiene practices.
• Took the VCR test as part of the PreCode assessments and found that I was positive. Another thing to freak out and worry about!
• Very anxiety-prone (as you can tell by this post!).

I guess what I'm looking for is positivity and reassurance, along with any stories, advice, and tips for navigating this scary new path. I keep thinking I have what may be the beginnings of AD (especially when I can't remember the name of someone I met briefly at a party or forgot the name of a movie I watched a few months ago). I'm also deeply afraid to take a cognitive assessment for fear that it'll confirm all of my anxieties.

Any words of calming encouragement for someone who's spiraling after finding out their 4/4 status?
Hey Jaxiam,
So glad that you found your way here to the ApoE4.info website. This is a wonderfully supportive community where you’ll get some different perspectives concerning many of your questions and hopefully calm some of your worries and anxieties about the future.

Clearly, your wonderful character strength of curiosity and your apparent love of learning are what have guided you here today and I am certain, they will take you closer to discovering the answers that will assist you in planning for an optimally healthy future.

Feeling overwhelmed is a fairly common reaction when learning about your ApoE status and you are in good company, however, as you gain additional information you will also learn that we have more control over our cognitive destiny that was once realized. Knowing your ApoE4 status can empower you to be proactive to make the changes to help prevent cognitive decline. It sounds like you are already working pretty diligently on that!

Research in recent years has shown that making certain lifestyle choices can have a protective effect. You appear to be way ahead of the game as you certainly have a considerable amount of positives on your side! Your ongoing commitment to exercise. physical activity and healthy eating are excellent steps toward a lifestyle that will make a significant impact on your overall as well as your brain health.

You will find others on this site and elsewhere who carry the ApoE4 gene and are living healthy and active lives. I am inviting one of our knowledgeable moderators NF52 to chime in with some of her personal experience and expertise.

You may find that a practice of Mindfulness Meditation may be one strategy to support you in managing stress and anxiety. Stress management is another one of the pillars of good brain health.

As a Support Team Intern, I would like to officially welcome you to this forum and provide you with some guidance to get the most out of this website. First, if you would like to learn more about ApoE4, the Primer is a detailed and informative resource written by a practicing Medical Doctor with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies. There is also an accompanying glossary for the Primer.

There is a How to Guide that offers tips on how to navigate forums and respond to posts including how to quote members (use the quotation icon in the upper right of any post) so they get an email notification of your post. It also demonstrates how to use the “Search” function for topics, and how to subscribe to topics of interest in the forums.

Finally, if you would like to learn more about other community members' experiences or even share more about your own, you can link to Our Stories.

I hope you find these tools useful as you navigate the site. Thank you for your helpful contribution and I encourage you to continue to share about your experiences. Please don't hesitate to reach out if you need any assistance.

Best in health,
Barbara
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Re: Filled with anxiety about my 4/4 status

Post by TheresaB »

I can’t tell you not to feel anxious, you’re going to feel what you’re going to feel. But you are not the first person to write filled with anxiety about your 4/4 status, so as a fellow 4/4, I’m going to cut and paste from what I’ve written to others.

*The ApoEε4 allele is not deterministic, it does not mean you will get Alzheimer's. It is a strong risk factor for sporadic Alzheimer’s, but it's not deterministic. ANYONE can get Alzheimer's, that’s why it’s called sporadic Alzheimer’s.

*4’s are just at greater risk, a risk that is GREATLY influenced by lifestyle factors. How genes are expressed depend heavily on lifestyle influencers. Genes are only the hardware, it's diet/lifestyle that is the software and determines what the hardware does.

*Genes are not destiny. Dr Dale Bredesen (see see our wiki https://wiki.apoe4.info/wiki/Bredesen_Protocol) has said Alzheimer’s should be a rare disease. He means that for all everyone, not once has he said except for ApoEε4s.

*According to Genome-Wide Association Study of Brain Connectivity Changes for Alzheimer’s Disease from Jan 2020, the effects of ApoE4 accounts for only 27.3% of the overall disease heritability.

*I hate it when people refer to ApoE4 as "the Alzheimer's gene" that is such a misnomer. It's a "you better be careful with lifestyle choices for healthy aging" gene because we are also at greater risk for other health concerns.

*ApoE4 isn’t the number one risk factor for Alzheimer’s, aging is, and that’s a freeing thought because while we can’t control our genes, we can all control how we age! There’s so much information out there about aging well!

*I am eternally grateful that I live in an era where we know much about this allele. I’m not blind to the issues to which my genetics predisposes me, quite the contrary, I’ve tried to do a lot of research and I know where a lot of issues lie. But I’ve used that knowledge to take action to mitigate those risks. That makes me feel empowered and in control of my own health. I don’t feel inevitably doomed.

Specifically addressing some of your concerns.
Jaxiam wrote: Sun Dec 04, 2022 4:18 pm To be quite forthright: I'm scared and deeply afraid for what the future holds. I'm having difficulty sleeping at night, and can't think of anything else but my 4/4 status and what it will mean for my husband and daughter in the future.
Our bodies are listening to our thoughts and you literally can make yourself sick with worry. Your anxiety and insomnia is very stressful for your body. Sounds like you already realize you need to take action on that. We do have a wiki on stress that contains some strategies that can help. You may want to pay particular attention to the sections on “Thought patterns” and “Take a Stress Management Course or Therapy”. Our wiki on stress: https://wiki.apoe4.info/wiki/Stress
Jaxiam wrote: Sun Dec 04, 2022 4:18 pm I've overanalyzed my lifestyle and past habits to death, and have beat myself up for stupid decisions I made when I was in my 20s and 30s (mostly around pretty heavy binge drinking).
Sins of the past, yes, I can relate. What gives me hope in this area is I was young then when the brain is better able to handle abuses and the brain is plastic. That is to say it has the ability to change continuously throughout an individual's life. We make neurons until the day we die. But we must nurture that neuroplasticity. I liken it to my houseplant that looks wilted when I come back from vacation, but after I water it and open the blinds it pops back up.
Jaxiam wrote: Sun Dec 04, 2022 4:18 pm I have normal/bordering on low blood pressure (110/65), no signs of diabetes, and pretty normal cholesterol (usually fluctuates between 190-220, but mostly because my HDL is high — usually in the 90-100 range).

That is great news! Not to give you one more thing to worry about :D but have you had your inflammation markers checked? ApoE4s are pro-inflammatory and that was my issue. But again, good news, I removed inflammatory foods [grains, dairy and certain plant foods containing lectins - legumes (peanuts, chickpeas also called garbanzo beans, peas, green beans, most beans, and more), the squash family (zucchini, pumpkin, butternut, acorn etc squash) and vegetables of the nightshade family (tomatoes, peppers, eggplant, white potatoes, etc)] - and my markers went down. Pressure cooking can also neutralize lectins in most foods, but it doesn't work for grains.
Jaxiam wrote: Sun Dec 04, 2022 4:18 pm I use a medical cannabis tincture of 9:1 THC/CBD and it works like a charm! But now I'm worried that using cannabis to help me sleep might actually be hurting me.
I can’t say yes or no to this with authority. The more I read, the more I vascillate. But I will say I hope you vetted the product for farming practices (organic), third party testing, and QA practices to screen for potential harmful contaminants. We have a wiki on this subject: https://wiki.apoe4.info/wiki/Cannabinoi ... ,_Cannabis One thing I noted from reading that wiki was this paragraph which implies that the THC may lead to leaky brain, which in turn leads to neuroinflammation. Under the subheading Cannabinoids and Sleep :
THC can help but might have negative effects in the long run. Of the two strains of marijuana that contain THC: indica and sativa, the indica strain produces a greater sedative effect because it contains higher levels of a terpene called “myrcene.” Myrcene influences the permeability of cell membranes, and helps THC cross the blood-brain barrier more easily.
Some more tidbits/thoughts since you seem to feel overwhelmed:

We also have a Facebook page: https://www.facebook.com/apoe4.info where health advice of interest to 4s and research papers are published nearly daily. You can get information to think about a few articles at a time and you may not feel overwhelmed.

Would a health coach be of benefit to you for support? If you need help finding one, we have a wiki article on that: https://wiki.apoe4.info/wiki/ApoE4-Awar ... th_Coaches

You are in a great position to make positive strides at your age. But remember the longer you go down a negative health path, the harder it is to turn around.

Best to you on your health journey. I hope to hear some progress from you in the future.
-Theresa
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Re: Filled with anxiety about my 4/4 status

Post by NF52 »

Jaxiam wrote: Sun Dec 04, 2022 4:18 pm Hi Team APOE4!

Hope you've all had a wonderful weekend!

...I haven't had any other great-grandparents or grandparents who were diagnosed with AD, and most lived into their late 70s, 80s, and even 90s! My parents, who are in their late 60s, are sharp as a tack and show absolutely no signs of cognitive decline.)...
One statistic I found said that 4/4s had a 91% chance of developing AD by 68 (I now understand that study is no longer accurate or relevant, but it certainly sent me into a tailspin!).

To be quite forthright: I'm scared and deeply afraid for what the future holds. I'm having difficulty sleeping at night, and can't think of anything else but my 4/4 status and what it will mean for my husband and daughter in the future. I've overanalyzed my lifestyle and past habits to death, and have beat myself up for stupid decisions I made when I was in my 20s and 30s (mostly around pretty heavy binge drinking).

...I guess what I'm looking for is positivity and reassurance, along with any stories, advice, and tips for navigating this scary new path. I keep thinking I have what may be the beginnings of AD (especially when I can't remember the name of someone I met briefly at a party or forgot the name of a movie I watched a few months ago). I'm also deeply afraid to take a cognitive assessment for fear that it'll confirm all of my anxieties.

Any words of calming encouragement for someone who's spiraling after finding out their 4/4 status?
Welcome, Jaxiam, from someone who is 70 and old enough to be your mom--and also healthy, happy, cognitively normal, physically active and involved in multiple projects that keep my brain working. And I happen to know lots of women like me: TheresaB, who replied with such helpful reassurance and info, is a younger 4/4 (practically a kid in her early 60's!) and also engaged as a Board Member and the administrator of the FB page, reading lots of info on ApoE 4 and staying optimistic. I know of people with ApoE 4/4 in their 60's and 70's who are still practicing in their professions, and we have members in their 80's who are also doing just fine.

So ignore that 98% statistic you saw! I saw something like that 8 years ago and also spiraled--until I realized those statistics were "convenience samples" based on looking at the age of people who showed up at memory clinics. Obviously, if someone is relatively young and starts to experience cognitive issues, they may seek a professional diagnosis. But that doesn't mean they are representation of ALL the people with ApoE 4/4, any more that a recent colleague who had identical triplets at the age of 28 was representative of all 28-year olds.

Your family history is a big factor in your favor, suggesting that your family has strong environmental and genetic resilience and resistance to both cognitive and physical impairments! Your paternal grandmother and you share at most 12% genetic DNA, and NO environmental history. I'm pretty sure she was not able to get a Master's degree, even if she would have loved to do that and she probably lived through the Depression when many families struggled with food security, and ate food that was heavily smoked to last through the winter. It's just at likely she had vascular dementia from unrecognized high blood pressure and untreated heart disease, which my mother had at the same age and from the same generation. You don't have that and are incredible unlikely to, given your athleticism and healthy diet.

Here's some more good news specifically for ApoE 4 carriers, from a study done about 25 years ago, but with excellent monitoring for 11 years in two diverse community settings. These results have been confirmed numerous times since then, but this list should make you feel like you've checked all the right boxes already. And for some explanation, when they mentions "odds ratio" (OR) they are referring to the likelihood of someone with a certain factor (ex. higher literacy level with OR of 9.5), it means someone like you with a high literacy level is 9.5 times LESS likely to develop cognitive impairment that someone with a low literacy level. Same with being a college graduate: you are 3.8x LESS likely to develop cognitive impairment that someone with only a HS education.
Results:
Among white APOE ε4 carriers, the strongest predictors of cognitive resilience were, in relative order of importance, no recent negative life events, a higher literacy level, advanced age, a higher educational level, and more time spent reading. Among black APOE ε4 carriers, the strongest predictors of cognitive resilience were, in relative order of importance, a higher literacy level, a higher educational level, female sex, and the absence of diabetes mellitus. In follow-up logistic regression models, higher literacy level (adjusted odds ratio [OR], 9.50... ), a higher educational level (adjusted OR for college graduate vs less than high school, 3.81 ...)...had significant independent effects in predicting cognitive resilience among white APOE ε4 carriers.
. https://www.ncbi.nlm.nih.gov/pmc/articl ... otein E ε4

I was in a clinical trial from 2017--2019 just for healthy people with ApoE 4/4 ages 60-75, and they enrolled the goal of 450+ people with no problem, for what was planned as a 5 year trial.

Finally, we know so much more about prevention through healthy lifestyle habits in mid-life (your 20's doesn't count as mid-life anywhere!) and late life, high education, challenging problem solving in home. or at work, social connections and exercise.

You have all of the traits and experiences of cognitive resilience and a joyful heart, as your greeting and post clearly prove.

Please know that scientists are working incredibly hard to understand in much more detail exactly what happens in adult cognition over time, especially in women. You will get to benefit from all of that--and tell your husband, children and grandchildren about it!

Hugs from a wife, mom and grandmother who is so much more than ApoE 4/4

Nancy
4/4 and still an optimist!
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Re: Filled with anxiety about my 4/4 status

Post by Jaxiam »

I want to thank you all for taking the time to respond to my (admittedly very long!) post. It's helped lessen the anxiety and allowed me to sleep a bit better at night without worrying my brain cells to a breaking point.

I've taken a deep dive into many of the topics here (especially around sleep and diet) and there's such a wealth of knowledge! I hope to contribute in the future and help others who are discovering their status for the first time.

Really excited to start the PreCode program and get a handle on my brain health — my lifestyle is one thing I can control, and I'm not going to squander that opportunity.

You all are doing amazing work here and I'm so incredibly grateful to have found this resource. Sending you all big virtual hugs for taking the time to respond to my post!
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Re: Filled with anxiety about my 4/4 status

Post by TCHC »

Hi Jaxiam
Firstly, you're in the right place for support, as you've seen in the outpouring of help and advice in response to your post.
Secondly, well done on doing your research and having such a healthy lifestyle now!
And the only thing I have to add, not already mentioned by others, you have normal (bordering on low) blood pressure. I am on the slightly low side (most recently 113/59). I used to be so proud of that! I'm working on raising mine just a little, as I only recently discovered that low can be bad too. Your brain needs oxygen and nutrients, coming from a healthy blood supply, and that blood supply needs to get to the extremities (your brain). Of course, exercise will raise it in the moment. And drinking more water, keeping hydrated raises it too. Low carb is also good for this, so ketoflex 12/3 to the rescue again.
I wish you the very best on your journey. I hope all the advice you've seen has helped you to reframe and see that you're doing all the right things and has helped bring the anxiety down a notch.
Lindsey
TCHC - Lindsey Byrne - The Cognitive Health Coach - UK
Functional Medicine Certified Health Coach (FMCHC)
Certified Re:CODE 2.0 Health Coach
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Re: Filled with anxiety about my 4/4 status

Post by Jaxiam »

Thanks so much, Lindsey! I appreciate your response and support.

And interesting, re: low blood pressure. I'd never considered that low can harm the brain as well! Something to definitely watch out for.

I'm feeling much less anxious these days as I absorb all of the info on the Bredesen protocol and feel a bit more in control of things I can do to help my genetics out. My PreCode report was very encouraging — really positive blood tests that only need some minor tweaks to fully optimize. Nothing too major stood out except for some possible mold toxicity. That's going to be a bear to figure out!

But I know with the help of this forum and the guidance of a health coach I can start to figure out that piece of the puzzle out!

Wishing you the best on your journey as well. :D
TCHC wrote: Thu Jan 05, 2023 3:26 am Hi Jaxiam
Firstly, you're in the right place for support, as you've seen in the outpouring of help and advice in response to your post.
Secondly, well done on doing your research and having such a healthy lifestyle now!
And the only thing I have to add, not already mentioned by others, you have normal (bordering on low) blood pressure. I am on the slightly low side (most recently 113/59). I used to be so proud of that! I'm working on raising mine just a little, as I only recently discovered that low can be bad too. Your brain needs oxygen and nutrients, coming from a healthy blood supply, and that blood supply needs to get to the extremities (your brain). Of course, exercise will raise it in the moment. And drinking more water, keeping hydrated raises it too. Low carb is also good for this, so ketoflex 12/3 to the rescue again.
I wish you the very best on your journey. I hope all the advice you've seen has helped you to reframe and see that you're doing all the right things and has helped bring the anxiety down a notch.
Lindsey
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Re: Filled with anxiety about my 4/4 status

Post by TCHC »

That's great to hear that it's all going so well and you're feeling better about it.
L
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