Ramblings of a newbie. Apologies in advance for the lengthy post.

[avb]

Hello.

I am a newly found (by accident) 4/4. I have lots of questions I am hoping some of you might be able to help with.
I am a 42 year old woman. I have many unusual health conditions so honestly this new information has just about pushed me over the edge.

From what I am gathering having 4/4 gives me a huge chance of getting AD. At this point there is no cure but there does appear to be some hope in the future for some kind of treatment probably relating to changing the structure of the 4? So really all we are left with is trying to prevent as much damage as possible, which does not necessarily stop AD but may slow its progression? It looks like there are studies showing that diet and exercise MAY make a difference but nothing too concrete backing it? Is this about right??

I have been trying to find information on diseases associated with apoe4 but have not come up on much other than coronary. I have been sick for the last 12 years with many problems being found, but no real answer or fix. I have a bone disease called Fibrous Dysplasia, which is a different genetic defect. I was born with that but able to ignore it. At 30 I started having many symptoms such as fatigue, weight gain, cognitive issues, hair loss, etc. I was diagnosed with a pituitary tumor and had surgery for it in 2007. Unfortunately, we have never been able to stop some of these issues. I have been all over creation and there is no "fix". So I have been just trying to pretend I am normal and function the best way I can. My husband and I were not able to have children and after failed IVF's and miscarriages we are in the midst of adopting. This news of the 4/4 has helped me decide we are not going to adopt.

I have been a relatively healthy eater the past 10 years and pretty much stay away from carbs/ sugar as I do have issues with insulin. I am really not sure I am going to be able to control it via diet. I hesitate to take Metformin but will if need be. Glucose is fine, leptin high. I was eating too much fat I guess, but the verdict doesn't seem to be out on fat?? The only consistently bad thing I do is drink too much red wine, which I have stopped and miss dearly.....My CRP is always elevated.. Cholesterol was a little high this last time, but I was on vacation and ate what I call "badly" so I expect it will be coming down next round. It is usually not a problem.

Exercise is a real issue. It wears me out and makes me feel horrible. I just have not been able to exercise for the last 10 years.

So my doctor is sending me to a neurologist for a baseline for us and then to a cardiologist to do more in depth testing than I have previously had. I do have chest pains etc., but always chalk them up to my hormone issues. He also mentioned trying to get me into trials. Any ideas on that?

Here is a list of meds/supplements I am on:

--Humatrope which is growth hormone. I am having a hard time finding much info on GH relating to apoe4, but I am truly deficient and since it is directly correlating with mental decline and aging I would *think* it would be beneficial??
--Levoxyl and Armour for thyroid replacement
--Progesterone (still deciding on estrogen)
--Testosterone
--Vit D
--Niacin
--Melatonin
--ALpha Lipoic Acid
--Digestive Enzymes with Probiotics
--Ubiquinon
--Tumeric

I was taking an occasional sleeping pill and xanax. Have had extreme stress as well. Death of mother last year and now death of father is looming in the very near future. (both 64, both cancer).

It doesn't feel like I have a fighting chance to keep this at bay. Any ideas of a study or a doctor who might be able to help? I have found the best luck with researchers regarding my other conditions.

Thanks in advance for any input!
If you read this you deserve a medal

[Stavia]

Hi avb and welcome. Firstly let me give you a hug - this is how we write it (((avb)))

You have a heap of stuff to cope with and I understand completely about it being overwhelming. Your second paragraph is spot on. Lots of suggestions and associations that what we are doing at our age is protective but no irrefutable black and white evidence at this stage.

My 2 cents re your meds: if you are deficient on GH then you need it. There is no evidence it is harmful in apoe4.
Is your B12 ok? Your homocysteine? You might want to consider B12 methylfolate and P6P.
IMO its ok at your age to take the occasional xanax and sleeping pill.

The only two people I know of in the USA you could work with are Bredesen and Issacson. But you'd have to pay. Maybe others on the forum know more.

(((avb)))

[avb]

Thanks Stavia. Your hugs are greatly appreciated!

My homocysteine and B12 look okay. I am confused on this whole cholesterol and particle things. I.E., why are my triglycerides
so good? The doctor who tested me ran a more detailed version and I am finding the results hard to maneuver. But I will figure it out....

I am going to look into both Dr's you mentioned and try to see them. Hopefully I will get a little more input here regarding the differences between the Dr's approaches, etc.

I am trying to force myself to believe that finding this info out is going to beneficial for me in some way, and will improve my current issues and life:)

Thanks so much Stavia, I really appreciate it.

[Julie G]

Welcome avb You are not alone. Many of us are also dealing with other layered medical issues. The good news for some of us is that addressing our neurological health (actually optimizing overall health) tends to benefit other conditions as well.

I'm a fellow 4/4. First learning is the worst. It is very verwhelming and there are still many unanswered questions. You seem to have a good handle on the landscape and can tweak as you (we) learn more. I can promise that living with the knowledge of your homozygote status will get easier. A year from now, it'll be your new "normal." You may ultimately feel grateful to know as it gives you the opportunity to address issues before symptoms show.

I'm sorry that this knowledge has lead you to decide not to adopt. That must have been a tough decision- one you can always re-visit as your health/comfort level changes. (((avb)))

If you are in surgical menopause or otherwise low on estrogen, you may want to consider supplementing. Some recent evidence demonstrates that it helps modulate cerebral glucose- a problem for E4 carriers. You may also want to begin focusing on increasing your Omega-3s via diet or supplementation. E4 carriers with higher levels fare better than those with lower levels.

Stavia is probably right that an occasional sleeping pill won't hurt, but it's best to avoid if you can. Many have found that melatonin, and/or tryptophan, magnesium, and progesterone do just as well and may be neuroprotective.

Dr. Dale Bredesen (SFO) and Dr. Richard Isaacson (NYC) are great options for helping you prevent cognitive decline. Dr. Steven Gundry (Palm Springs, CA) is a cardiovascular surgeon who focuses on E4 heart health. Use our search engine to learn more about all of them.

[Starfish77]

(((avb)))
Welcome AVB. You are dealing with a lot of things at once. I'm glad you are with us. I can certainly say that I'm much healthier 78 year old from what I've learned from this site.
Starfish 4/4

[SusanJ]

(((avb)))

You're in the right spot and hope we can help you find a good path through all of this.

Sorry about your folks, which is awful since stress can make just about any other health challenge ugly.

Triglyceride levels are often genetic. If I have a chance, I'll dig up a paper that describes some genes that influence it. Have you done 23andme or other general genetic testing?

Keep asking questions and we'll share what we know.

[marthaNH]

Some of the best people we have are already helping you, and I suspect the others will be along in a little bit. I just want to offer you another of our custom hugs (((((((avb)))))))). I didn't know I had one bad allele (3/4) until fairly recently, but my dad's decline was staring me in the face for about the last ten or twelve years, so it was no surprise. My mother and her mother both died at 68 for other reasons, some of which I need to be careful to avoid. I have been dealt a much easier hand than you, and mention my "issues" just to say that this forum has helped me get into the best shape of my life, both physically and emotionally. There are many paths. Good luck. Welcome. You're young still and that's on your side.

[avb]

Thanks for the warm welcome everyone!

I am sorry you have to be here, but thankful that someone is...

I have not had much other genetic testing. I do have an A/C under MTHFR A1298C. I am guessing this is only one copy?
The MTHRFR A1298C looks fine. On the Apo test is says C112R and R158C what does this mean?
Is there something more specific that might be useful?

Thanks again!

[SusanJ]

Yes, you are heterozygote for MTHFR 1298, which is related to methylation, so it looks like you had a few other genes tested. Heterozygote MTHFR 1298 is not one that typically needs to be treated.

The two apo genes you cite are the ones that establish your 4/4 status.

Perhaps go through the Getting Started pages if you haven't already. It will help you get up to speed a little faster and probably create more questions. https://www.apoe4.info/forums/viewtopic.php?f=33&t=1418