Hello - Autoimmune to APOE story

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Cleo
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Hello - Autoimmune to APOE story

Post by Cleo »

Hello! I am new on this forum and just wanted to introduce myself. I guess I'll just say how I got here. ;) I'll keep it as short as possible.

I have Hashimoto's, an autoimmune thyroid condition, and I renewed my efforts to reverse it about a year ago when "The Thyroid Secret" webinar series came out. There was little to no info available re the underlying root cause of autoimmunity when I was diagnosed in 2001. I was simply told by an Endocrinologist, who I am thankful to for pegging the diagnoses quickly, that I should not worry about it: the solution was that once my thyroid was destroyed to a high enough degree, I could get on synthetic hormones at a fairly low cost and be dependent on it for my life!. :o . That did NOT sound like a good plan! :evil: If my body was indeed attacking itself, that WAS something wrong! Fortunately, nowadays, there is so much more information (communities) online about it, for that and for things like this. :) The increased communication we have via the internet allows for a kind of revolution in medical practice, driven by lots of solo or group "experimenters" coming together to try to make sense. It's neat. :ugeek: It may not be as painstakingly controlled, but we need answers.

I did discover a vitamin D deficiency in 2010 or so, and that I was a genetic carrier for hyperinsulinism. I wondered if that latter explained my apparent sensitivity to and at the same time dependence on sugar? I have not worked with Dr.s and have not taken hormones. I have been on the AIP (elimination) diet since March and have felt much better since then - although I still allow too many "sugars" in the form of juice, maple syrup, fruit, honey, and wine.

Part of the Hashimoto's protocol (I have been using Izabella Wentz book) is to look for your root cause(s). The elimination of food triggers really helps, but sometimes there can be another underlying cause (viral, adrenal, etc.) which requires you to dig deeper. You can tell by your symptoms and antibodies. One thing to do is to check your MTHFR status, SO I ordered 23andme and got the raw data. I found out that I have 3 homozygous mutations in my methylation/detox pathways (MTHFR C77T, MTRR, and SOD2). SOD is superoxide dismutase key in limiting oxidative damage. I think the methylation status also decreases my bodies ability to get rid of metals, like mercury. I have 2 heterozygous in COMT which would then effect whatever solution there is for the others. This MTHFR issue seems to require another protocol, and more testing, to "fix" nutrigenomically. I find the methylation cycle very complex!

Also, when the 23andme out of the box reports came before that, they had (behind an extra button that said essentially "are you sure you want to KNOW this information???") APOE status. I pressed it without hesitation and found out mine was e4/e4. :| It said that meant the absolute risk for European females (higher than males and higher than other ancestries) was about 65% by age 85. (I think those were the numbers.). My first reaction was to be actually not too surprised. I knew I was at risk. My paternal grandfather died of "Alzheimer's "in his late 70's, as did his eldest son (except they called his "Lewy bodies"), and my father died just 2 years ago in his early 70's of severe dementia, which they had called a "Parkinsonian Lewy body" form of Alzheimer's. To me they are all just flavors on a spectrum (not tasty). On my Dad's side, only my paternal grandmother and my aunt did/do not have it. My cousin, son of the uncle, has acute autoimmune issues. On my mother's side, both of her parents lived into their late nineties/early 100's - they had no memory of who anyone was before passing. It wasn't labelled Alzheimer's - it was another kind of dementia it effected them each for 5-10 years. My mom is still fine mentally and in her early seventies. (I am in my forties and my memory seems sometimes a bit weak to me, but its hard to say if that is brain fog from thyroid or what).

I did some googling and that has given me an increasing sense of dread about e4/e4. Everything I have seems to increase risk of Az's :shock: Family history, European ancestry, female, sub-clinical low thyroid, chronically low vitamin D levels, MTHFR/MTRR impairment, SOD impaired, chronic autoimmunity. Most of those factors increase the risk of Az's in addition to the e4/e4. I feel like "the perfect storm". I feel like it's all connected too, and that if I can solve autoimmunity/methylation, that I will be already most of the way there on doing the best possible on Alzheimer's prevention. All I can do is the best that is possible with the information I have today, which is a lot more than there was in the past. My Dad and grandfather never had a chance to look at this. (I am not sure, come to think of it, if they even knew they had anything.)

Now there are several different protocols (Wentz for Hashimoto's, Yasko for MTHFR, Bredesen's for Alzheimer's prevention) for the different problems. How do I combine or reconcile them when they contradict, which they often do? :? I am trying to find a functional medicine Dr. now. There is someone named Michelle Eads.

I'm sorry that wasn't "short"! I guess it is a relief to talk to others who have the same.
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floramaria
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Re: Hello - Autoimmune to APOE story

Post by floramaria »

Welcome, Cleo! Thank you for providing a thorough introduction and explanation of how you got to this site and the challenges you are facing. It is quite understandable that you are having difficulty reconciling the different protocols you are trying to follow for different conditions, and how that concerns you, since, as you said, they sometimes contradict each other. Your idea of finding a Functional Medicine doctor to help you chart the best path, given the complexities of what you are trying to balance, seems like a great step.
Your in-depth knowledge of your health and what you have already accomplished on your own is impressive. While there are areas where the protocols conflict with each other, I imagine that there must also be areas where they align in underlying principles of good health. Your doctor will be able to help you navigate your way.
Since you have been on the site for awhile, you may have already discovered the Primer. Written by a doctor member, Stavia, it is a wonderful place to get an overview of basic strategies to minimize the risks of ApoE4. Looking through that, you may find areas of commonality with the other protocols you are following.
Also there is a Wiki, where there is a section on methylation that you might find valuable. And there is also a Search option, in a drop down menu that you access by clicking the three dots just to the right of your name.
I am so sorry to read about how severely dementia has impacted your family. In the face of this, you have a positive attitude and appreciation of the possibilities available to you that were not available to your family.
All I can do is the best that is possible with the information I have today, which is a lot more than there was in the past. My Dad and grandfather never had a chance to look at this. (I am not sure, come to think of it, if they even knew they had anything.)

We welcome you to this supportive community. We share your outlook; we are doing the best we can with the information we have today. This is a good place to see new information as it becomes available.
Please ask questions as they occur to you. There is a wealth of personal experience and knowledge to be shared.
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
ReCODE 2.0 Health Coach with Apollo Health
Magda
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Re: Hello - Autoimmune to APOE story

Post by Magda »

Hello Cleo,
Welcome to the forum.

Thank you for sharing your story. It is very impressive how much you were able to learn about your health over years. I like that you did not follow your endocrinologist advice, and waited for your body to destroy the organ. You have a great intuition, and right mindset.
You are right, "it's all connected", if your body is in a state of constant war, your brain will suffer too, and if you happen to have a weak link/ genetics snip, Apoe4 allele, there is a huge chance that your body will pull that trigger, and you will develop some form of dementia.
Like you know there is a lot you can do to turn your genetic destiny around.
You are on the right path, looking at all systems, and removing as many trigger as possible, balancing the body, rebuilding it, strengthening it by giving what it requires in your unique situation. All this will make you more resilient. However, it is a lot of work, and it can become very complex, so looking to hire a functional medicine doctor, is a great idea. I have not heard about Michelle Eads. Maybe someone else from the forum knows that doctor...
I can send you to our list of practitioners trained in Dr. Bredesen Protocol:
https://wiki.apoe4.info/wiki/ApoE4-Awar ... ctitioners

I hope this is helpful. Please let us know if you have more questions.

Be well,
Magda
Functional Medicine Certified Health Coach & MS Clinical Nutrition Student
IFM/Bredesen Trained, Reversing Cognitive Decline
Jennifer
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Re: Hello - Autoimmune to APOE story

Post by Jennifer »

Hi Cleo - I just wanted to thank you for your in depth post and mentioning the raw data from 23 and me. I have long suspected that I am developing some autoimmune issues. Based on your post, I downloaded the 23 and me data, did Genetic Genie and low and behold, I also have the homozygous MTHFR mutation (as well as some others). I now have another area to look into in regards to my health - in addition to being an E4/E4. So, thank you for your insights - they've helped me uncover another piece of the puzzle.
chrissyr
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Re: Hello - Autoimmune to APOE story

Post by chrissyr »

Hi Cleo-- I too have hashimoto's. I was diagnosed perhaps around the same time as you. I am currently on levothyroxine100 mcg. I did go to a "natural" type dr. at the time as I didn't like the idea of letting my body destroy my thyroid and then going on synthetic hormone! But I didn't get a lot of support around other alternatives. And actually I feel pretty good on the synthroid.
Hypothyroidism does not seem to run in my family. My mother in law has it (and has no cognitive issues). Dementia does, however run in my family. My naturopathic doctor recently suggested that vitamin A and D can help dampen down the robust thyroid antibodies, as they can also act on the cerebellum.
chrissyr
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Re: Hello - Autoimmune to APOE story

Post by chrissyr »

Also, I have read that gluten intolerance is common with Hashimoto's. I am off gluten now, personally and seem to do better. (but it's too late for my thyroid!)
Anna
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Re: Hello - Autoimmune to APOE story

Post by Anna »

Hi Cleo. I am a huge fan of Izabella Wentz and watched her entire docuseries. :) Her Root Cause book is a brilliant introduction to functional medicine. I believe that the changes you are making while following her approach will go a long way toward mitigating the risks that come with being e4/e4.
Cleo wrote:I did some googling and that has given me an increasing sense of dread about e4/e4. Everything I have seems to increase risk of Az's Family history, European ancestry, female, sub-clinical low thyroid, chronically low vitamin D levels, MTHFR/MTRR impairment, SOD impaired, chronic autoimmunity. Most of those factors increase the risk of Az's in addition to the e4/e4. I feel like "the perfect storm".
I hear you on feeling like the perfect storm. I have most of those things too, and add to the mix, a genetic tendency to absorb more iron than I need, among other findings. But I take comfort in other things I have: a healthy weight, a healthy diet, the desire to address root causes, etc. We have to believe that this last item, in particular, will make a huge difference. :D
Cleo wrote:I guess it is a relief to talk to others who have the same.
Absolutely a relief!
~Anna
4/4 but so much more
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