Update on B1 dose increase after 4+ years

[1LittleWillow]

This was my original post on this topic:

healthunlocked.com/cure-par...

That was from June of 2023. I continued at the higher dose (2 grams/day) until the middle of August, then I started having symptom recurrence (brain fog, fatigue, urinary urge incontinence, word recall problems, increased tremor). I started playing with my B1 dose again--up and down, taking breaks--but couldn't get back to the steady state that I'd been in since starting the B1. I eventually got to the point where ANY dose of B1 was giving me symptoms, so I stopped it completely. That has been scary because it has had such a HUGE positive effect for the past 5 years. I feel like I need it, but my symptoms are saying no. BTW, I haven't changed anything else other than adding the DHA for dyskinesia 3 weeks ago.

I haven't taken any B1 for over a month now, but I'm not experiencing any of the symptoms I always get when I stop taking it, and I feel fine. I'm really confused.

The issues with the B1 started within a couple of weeks of starting an estrogen/progestogen patch in mid-April of 2023. That was also when my dyskinesia first started, although I didn't realize that's what it was (see: healthunlocked.com/cure-par....

I keep wondering if there's a connection between the B1 and dyskinesia problems and the estrogen patch. The only thing I've been able to come up with is that estrogen might slow gastric emptying and decrease gut motility.

I want to stop the patch, but I was diagnosed with osteoporosis in June, so my doc wants me to stay on it.

[park_bear]

Upon reviewing the x-ray of my lumbar spine, my MD said my bones would be the envy of a much younger person, and wanted to know what I was doing. What I'm doing: supplementing vitamin K, (K1 and K2), vitamin D, boron, silica and glucosamine chondroitin.

My writings on the subject:

Vitamins and Minerals for Bone Health and Reduced Risk of Cancer tinyurl.com/hya5dwd

Vitamin K: Unsung and Essential tinyurl.com/yd9l4j3q

Details of the vitamins and minerals that improve bone strength, reduce fracture risk, prevent hardening of the arteries, improve cardiovascular outcomes, and reduce cancer risk.

What You Need to Know to Reduce Risk of Hip Fracture and Cardiovascular Disease tinyurl.com/y8o9jy8u

A review of the foregoing + calcium deposits on teeth as a sign of trouble.

[1LittleWillow in reply to park_bear]

Thank you!

[1LittleWillow in reply to park_bear]

My T-scores and FRAX score really aren't too bad, so I'm pretty hopeful that with proper supplementation and additional weight-bearing exercise, I can get the osteoporosis under control. As long as it doesn't get any worse, I should be OK (I just turned 58). It's just frustrating to have yet another health issue, and I'm SO SICK of taking supplements lol.

[Missy0202 in reply to 1LittleWillow]

Same age, same problems. I am only taking supplements and doing weight bearing exercises for now. I guess I will know if that works at my next Dexa scan!

[chartist]

This is an old study, but it may be relevant for you :

pubmed.ncbi.nlm.nih.gov/151....

A relevant study quote from the abstract :

' Increasing evidence suggests that estrogens may protect the nigrostriatal dopaminergic pathway affected in Parkinson's disease (PD). Animal studies show that estrogens influence the synthesis, release, and metabolism of dopamine and can modulate dopamine receptor expression and function. '

Perhaps B1 is affecting similar pathways.

Art

[1LittleWillow in reply to chartist]

Thanks, Art! That's fascinating. That might explain why I've been able to reduce my mucuna dose by half after starting the patch (without reducing efficacy) while I was trying to eliminate the dyskinesia. I should have mentioned that in my post above (I forgot). Sounds stupid, but I just assumed I had been taking too much mucuna all along. There are so many moving parts that it's hard to keep track of everything. I've been dealing with a LOT of non-PD issues since Jan. of '22. It gets pretty overwhelming. I really appreciate all of the helpful feedback here. My MDS is super supportive and says that he's "dumbfounded" by how well I'm doing but can't help much with my voodoo medicine choices. 😂

[chartist in reply to 1LittleWillow]

1LW,

It seems that you may be serendipitously experiencing known effects of estrogen as it relates to PD symptoms :

news-medical.net/health/Est...

medicalnewstoday.com/articl...

nature.com/articles/s41598-...

sciencedaily.com/releases/2...

Art

[LAJ12345 in reply to chartist]

Does it work with men too?

[chartist in reply to LAJ12345]

ncbi.nlm.nih.gov/pmc/articl....

Art

[LAJ12345 in reply to chartist]

Interesting

[1LittleWillow in reply to chartist]

I've seen various references to estrogen and PD, but I thought it just played a preventative role for women. I never researched it, so I didn't think supplementing estrogen would have any effect on symptoms or progression (IOW, I assumed that taking it would be like shutting the barn door after the horse has bolted). I should have looked into it, but I've been struggling with so many other issues over the past two years that I haven't had a lot of time or energy left for additional research.

[Gcf51]

Isn't dyskinesia too much levodopa?

Is it usual for a B1 break to see massive improvements?

[1LittleWillow in reply to Gcf51]

Not necessarily a response to "too much." I tried reducing my dose several times, but getting it low enough to eliminate the dyskinesia also eliminated its efficacy.

parkinson.org/understanding...

I did not see massive improvements upon stopping the B1. I just maintained the improvements it had brought about. It may have to do with the estrogen patch (see Art's link above).

[CiciDuBois]

I’m having a similar experience with HRT and B1. I’d been taking B1 for a couple of years and it seemed to help - though I could only take small doses. I started HRT in October and have struggled with B1 dosage and get really bad overdose symptoms. Like you I don’t really want to stop B1 but I also need the HRT as I’m peri menopausal and have been finding those symptoms difficult. Interesting to see from other responses the potential positive impact of estrogen on Parkinson’s

[1LittleWillow in reply to CiciDuBois]

Wow, thanks for replying! It makes me feel more confident. I've been second-guessing the estrogen-B1 link a, lot. My positive response to B1 has been so dramatic for so many years that not taking it feels really scary. It's so confusing. In the end, we can only go by our symptoms though. 🤷‍♀️