Not doing too well....

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
hilbil

Re: Not doing too well....

Postby hilbil » Thu Dec 12, 2013 1:50 pm

today I'm a bit nervous
I have a consulting gig, revising an employee handbook for a small foundation
and I feel almost like I need to throw in the towel
We moved about 4 months ago, to a lovely wooded little town, but I can go down the hill to go on errands, but I have the darndest time getting back home. If I follow the same path both ways, I can't pull my car into a difficult driveway.
My husband is beginning to worry about me.
My mother had Alzheimers, so there is that 50% chance that I will get it
Plus I received a concussion, when hit by a Jeep SUV, and I was a perdestrian
and my spelling has gotten worse

I can still read novels and the NYTimes on line, etc.
I'm a 3/4
I read "Life Extension" closely, and the next pill I am thinking of ordering and taking is bio-curcumin and ginger and tumerones

I just worry who will take care of me if I get APOE mucho bad?

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Julie G
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Re: Not doing too well....

Postby Julie G » Thu Dec 12, 2013 2:33 pm

(((Hilbil))) gentle hugs my friend. A few ideas, look at any prescription meds you are taking. If they are anticholinergic, maybe see if you can use an alternative. Sometimes, our meds can interfere with optimal brain functioning. Have some vitamin levels checked, like B-12. Often deficiencies can cause cognitive impairment.

I was also having memory issues that have reversed since I began following Dr. Perlmutter's plan. Might want to look at some of his books.

Out of curiosity, how old are you now? I was only 50, but a 4/4, when my memory issues noticeably worsened. I am very hopeful that things can improve for you too, my friend.

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Re: Not doing too well....

Postby Silverlining » Thu Dec 12, 2013 2:45 pm

Hilbil...I read over your intro and I want to highly encourage you to consider a brisk walk every day, if your health is up to it. Of all the research I've read on Alzheimers, diabetes and other health problems, moderate, daily exercise seems to be the "one-stop-shop" for all. It's not a cure, but provides measurable benefit to a variety of body dysfunction. I know it's not easy to make that commitment, but you may find that it benefits you in ways you don't expect. It looks like you live in California, so hopefully the weather is a nice companion for a daily walk. Please don't be discouraged, you are doing a lot of good and proactive things for your health. I think you may like the new bio-curcurmin. Keep in touch here...

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Re: Not doing too well....

Postby SusanJ » Thu Dec 12, 2013 8:59 pm

Hilbil, many things can affect memory, including hormonal changes, stress and anxiety, regardless of APOE status. So, a couple of observations:

1) How long ago was your concussion? They take time to heal, and definitely affect memory.

2) You just moved, which is a major stressor by itself. I know when I moved a couple years ago, I had to figure out where to buy the basics of life, meet new friends, find work, find a new doctor, dentist, and so many other things. It can test anyone's memory, and is fraught with frustration - "I just want to find where the damn capers are in this store!" Maybe give yourself some time to settle in a bit more, then re-evaluate where you are with the memory slips and find a doctor to talk with to sort out the details.

I'm also a 3/4 and my dad had Alzheimer's, so I know that fear.

Hugs to you and know we're here for you.

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Re: Not doing too well....

Postby bwaters » Tue Nov 06, 2018 2:38 pm

Julie G wrote:(((Silverlining))) I know you well enough to know you WILL find your silver lining again. You have blown me away with your strength in light of all that's been thrown your way. And, we've talked about this; dealing with peri-menopausal madness in the midst of your other struggles... THAT, is too much. I'm continuing to send good energy and prayers for you and your brood.

(((G))) So proud of all you've overcome recently. I know you're probably aware of research suggesting SSRIs helps with CFIDS in physiological ways beyond depression...not to mention with your MAO defect, you can be quite low in serotonin in spurts and fits. I agree, it's very difficult to find docs that can weave together all of our complicated health issues. You are very smart to do your own research.

Forgive me for inappropriately adding my issues on to your thread, but I'll give you all a quick update on my recent health struggles. I DO have a pituitary tumor. It's small, 4mm, a microadenoma. I've know about it for about 7 years. Recently, my prolactin levels have doubled causing my docs to think I needed to either consider medication or surgery to deal with it. I got good news about THAT yesterday. The tumor has remained stable in size and, inexplicably, my prolactin levels have once again returned to normal- Yay. (However, the endo is still testing other hormones as my menses have half-heartedly decided to return after several years of confirmed menopause.) BUT, I did get some worrisome news about ANOTHER brain abnormality. I also have a pineal cyst, that I've known about for 20 years. Well, that one HAS gotten bigger, now 1.4cm. It's considered to be quite large and I'm to be on the lookout for hydrocephalus symptoms now :shock: My biggest concern is how THAT will impact my AD risk. The cyst is right in the middle if the brain, semi-blocking CSF flow. We know that's uber-important to clearing out amyloid. Am I subsequently clearing even more poorly due to my impeded flow? Try to find a doc who'll know the answer to that one. Oy vey. In the words of my dear friend, Silverlining, (echoing Dory from Finding Nemo) just keep swimming, just keep swimming. :roll:


Hi Julie,

I have not posted on the site since I joined early in 2018 - I have been on the Bredesen protocol since late January/2018 and have had two sets of full labs done -one in Feb/2018 and the second 6 months later in August/2018. All my labs were good except for my homocysteine which went up from 11mcm to 12 mcm and I have adjusted my B vitamins (B6/B12/increased methyl foltate and glycine) as per the Bredesen protocol to work on getting that number down. The main concern I had initially that I shared with my doctor was my testosterone number which was 453ng/dl in Feb and 228ng/dl in August. He was not concerned given my age 66 but I told him it was really important to have that number up above 500ng/dl based on the Bredesen recommendation of 500-1000ng/gl for men. He finally consented to give me a referral consultation with endocrinology and they did additional testing and found elevated prolactin at 77ng/ml (normal range is 4.0-15.2ng/ml) and low lutenizing hormone, T4 and Tsh with my testosterone at 329ng/dl. My free testosterone levels have been 4.08/Feb/2.74Aug/3.29 current) compared to the 6.5-15 range that Bredesen suggests. My endo doctor ordered an MRI which showed a larger pituitary microadenoma of 8by8by6.5 mm - well circumscribed hypoenhancing lesion. My doctor put me on the drug cabergoline to try to get the prolactin number down to 12 in the next two months and possibly help shrink the microadenoma tumor in size. I have one copy APOE4 gene with other risk variants - two variant copies of hereditary hemochromatosis and family history with mother of dementia Alzheimer's. The Bredesen protocol has worked great for me - I've had good energy levels - exercise daily - all other labs have been great and my weight has stabilized at 132 for months now - down from 167 - I completely went off dairy because I tested lactose intolerant and when I did it all my headaches went away until recently when I started have infrequent mild ones - probably due to the microadenoma. I do all organic - no processed foods - no grains - some modifications to keep out oxalate foods due to kidney stones which is a major problem for me for which I also had bad genetic variants I saw your post on prolactin from back in 2013 and wondered what your experience since then has been with the pituitary adenoma going forward. My endo doctor told me that as my prolactin number goes down then my testosterone number will go up.

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Re: Not doing too well....

Postby bwaters » Tue Nov 20, 2018 11:02 am

Hi Julie,

I have not posted on the site since I joined early in 2018 - I have been on the Bredesen protocol since late January/2018 and have had two sets of full labs done -one in Feb/2018 and the second 6 months later in August/2018. All my labs were good except for my homocysteine which went up from 11mcm to 12 mcm and I have adjusted my B vitamins (B6/B12/increased methyl foltate and glycine) as per the Bredesen protocol to work on getting that number down. The main concern I had initially that I shared with my doctor was my testosterone number which was 453ng/dl in Feb and 228ng/dl in August. He was not concerned given my age 66 but I told him it was really important to have that number up above 500ng/dl based on the Bredesen recommendation of 500-1000ng/gl for men. He finally consented to give me a referral consultation with endocrinology and they did additional testing and found elevated prolactin at 77ng/ml (normal range is 4.0-15.2ng/ml) and low lutenizing hormone, T4 and Tsh with my testosterone at 329ng/dl. My free testosterone levels have been 4.08/Feb/2.74Aug/3.29 current) compared to the 6.5-15 range that Bredesen suggests. My endo doctor ordered an MRI which showed a larger pituitary microadenoma of 8by8by6.5 mm - well circumscribed hypoenhancing lesion. My doctor put me on the drug cabergoline to try to get the prolactin number down to 12 in the next two months and possibly help shrink the microadenoma tumor in size. I have one copy APOE4 gene with other risk variants - two variant copies of hereditary hemochromatosis and family history with mother of dementia Alzheimer's. The Bredesen protocol has worked great for me - I've had good energy levels - exercise daily - all other labs have been great and my weight has stabilized at 132 for months now - down from 167 - I completely went off dairy because I tested lactose intolerant and when I did it all my headaches went away until recently when I started have infrequent mild ones - probably due to the microadenoma. I do all organic - no processed foods - no grains - some modifications to keep out oxalate foods due to kidney stones which is a major problem for me for which I also had bad genetic variants I saw your post on prolactin from back in 2013 and wondered what your experience since then has been with the pituitary adenoma going forward. My endo doctor told me that as my prolactin number goes down then my testosterone number will go up.

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Julie G
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Re: Not doing too well....

Postby Julie G » Tue Nov 20, 2018 12:42 pm

Waves, bwaters! I'm sorry that I missed your first post and also sorry about your pituitary microadenoma. Have you retested your prolactin level since taking the cabergoline? I'm hopeful that (and T) will normalize without any further intervention. My prolactin levels were normal at last check and I've not followed up on this since learning gadolinium (contrast dye used in brain MRIs) may be harmful especially with repeat MRIs. Congrats on your healthy lifestyle. Keep us posted on your new results.

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Re: Not doing too well....

Postby NF52 » Tue Nov 20, 2018 4:19 pm

Julie G wrote:My prolactin levels were normal at last check and I've not followed up on this since learning gadolinium (contrast dye used in brain MRIs) may be harmful especially with repeat MRIs. Congrats on your healthy lifestyle. Keep us posted on your new results.
Hi Julie,
I happened to see your post and just wanted to mention that, depending on the level of clarity needed for your particular situation, it may be possible to have a brain MRI without contrast. None of the MRI's used in the Generations Study are with contrast, nor was one I had years ago to rule out an acoustic neuroma. (If it were required, I'd be like you, much more concerned.)
4/4 and still an optimist!

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Julie G
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Re: Not doing too well....

Postby Julie G » Fri Nov 23, 2018 3:11 pm

I’m delighted to learn that the Generation studies aren’t using gadolinium! Very good news. Thanks, NF52.

I am aware that I can have an MRI without contrast. It’s been used a half dozen+ times (in my case) to distinguish my various pathologies from tumors. Given that my prolactin levels are normal and I’m currently asymptomstic and can still roll my eyes upwards (a tip from my Emory neurosurgeon), I’m choosing not to follow up on further imaging ATM. At this point for me, it’s potential benefit vs. risk of harm with repeat gadolinium exposure.

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Re: Not doing too well....

Postby bwaters » Sun Nov 25, 2018 12:58 pm

Hi Julie,
Thanks for the information - I go in for follow-up labs on January 11th and will let you know the results on my prolactin and testosterone levels.


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