Sometimes I'm Stupid. This is a re-write of my post extolling the virtues of vitamin D3 based on misreading a study and thinking down was up and left was right. I would just delete it but some people have seen it and I want the correction to be here.
This is the trial from 2016 that had me excited: Effects of Vitamin D in Parkinson's Disease (PD) trial results from 2016 clinicaltrials.gov/ct2/show... (his is a poorly named trial as they were actually testing vitamin D plus calcium). It was a 16 week trial with controls giving people vitamin D (10,000 IU daily) and 1000 mg of calcium.
I got excited when I saw the secondary outcome "Change in Cognition (Trail Making Test B-A)" was 12.13 and the placebo was -17.33. But lower scores are better, and to get the result they subtracted the baseline from the 16 week score so a positive number is bad. In this study the people on the vitamin D (and calcium) got worse as far as "Change in Cognition (Trail Making Test B-A)".
I should also point out for those that get excited by small short duration trials, it looks like the placebo did a great job improving cognition! I don't know what the placebo was, only that the "placebo pill with similar appearance to the vitamin D3". (the placebo group did get 1000 mg of real calcium too). ANYWAY, I should not get excited by small studies. The good placebo results highlight how volatile the numbers can be.
Here is a good breakdown of the study in detail. It even has links to the supporting data files: ncbi.nlm.nih.gov/pmc/articl...
And if you would like to read the description of "Change in Cognition (Trail Making Test B-A)":
The Trail Making Test (TMT) consists of two parts (A & B) in which the subject is instructed to connect a set of 25 dots as quickly as possible while still maintaining accuracy. The test provides information about visual search speed, scanning, speed of processing, and executive functioning. Part A measures processing speed and part B measures executive functioning. The TMT is time to complete each part of the test in seconds. Higher scores indicate greater impairment. Subtracting part A from part B is theorized to reduce the influence of the working memory and visuospatial demands and, therefore, provides a relatively pure indicator of executive function. Change score is measurement (Part B - Part A) at 16 weeks minus measurement (Part B - Part A) at baseline, negative scores indicate a improvement in executive functioning.
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Wouldn't it be the serum levels that are of interest, rather than the dosage?
Everyone is different. Checking the serum level and repeating it at intervals is the only way to know if someone is in the target zone (whatever that may be for the purposes of the experiment) and how they are metabolizing the dosage. Some may need a higher dose, some lower.
I disagree with your assessment of your intelligence.
In case you ever want to be tested... in the US, you can order the test yourself. I don't know the answer to how often, but I'm sure that information wouldn't be hard to find.
The first time I had mine checked, I had to insist. The doctor was very reluctant, complete with eye-rolling and ridicule, but finally caved. What a difference in attitude when the results came in (he was quite alarmed).
I have heard of the Coimbra process! I researched it quite a bit and even talked to somebody that has used it on this forum (I won't name names, but he was very nice).
Removing this part of my response as it was based on my misunderstanding of the trial (see above).
Bolt, despite your excessively self-deprecating tendency, I could tell that you're a prolific researcher so definitely google "Vitamin D hypercalcemia"
You shouldn't supplement such a high dose of D3 for the long term without periodically testing your blood level. Supplementing D and producing D through sun exposure is a different matter. These days, if your physician is reluctant to test you for your vitamin D level, s/he is obtuse and you should think about looking for another Dr.
In the US, insurance rarely covers the vitamin D test and I have to pay $150 per test although I'm fully insured, so I stopped doing that and have been using the below options to test my D level more often. Look into it.
Thank you Rescue, I've jumped back off the vitamin D train for now.
I read around the big words in this ncbi.nlm.nih.gov/pmc/articl... and 10,000 IU/d still seems kind of safe (but not if it makes PD worse). I would like to note that in the original study I started this with, they noted that vitamin D serum levels kept rising all 16 weeks, so they did not know how high they would go. The levels did not top out in 16 weeks. More research to do!
Vitamin D-Mediated Hypercalcemia: Mechanisms, Diagnosis, and Treatment 2016:
1. Vitamin D intake and hypercalcemia
The upper tolerable limit, defined as the highest level of daily nutrient intake that is likely to pose no risk of adverse health effects to almost all individuals in the general population, for vitamin D3 is 1000 IU/d in infants ages 0–6 months, 1500 IU/d in infants ages 6–12 months; 2500 IU/d in children ages 1–5 years; 3000 IU/d in children ages 4–8 years, and 4000 IU/d in adolescents and adults (97, 99). The short-term ingestion of up to 10 000 IU/d of vitamin D3 is associated with the maintenance of 25(OH)D serum concentrations below 50 ng/mL (125 nmol/L) (240), a concentration below which toxicity has not been observed. In a study of 40 patients with metastatic breast tumors, daily doses of 10 000 IU vitamin D3 for 4 months were not associated with hypercalcemia although small increases in serum calcium and decreases in PTH were observed (243). Ingestion of amounts of vitamin D3 or vitamin D2 higher than 10 000 IU/d in an adult (and lower amounts in children) should raise the suspicion of vitamin D intoxication, especially in the context of hypercalciuria and/or hypercalcemia because the serum 25(OH)D concentration rises steeply at intakes >10,000 IU/d. The duration of ingestion of vitamin D, the starting 25(OH)D concentration before the ingestion of vitamin D3, and the underlying reason for therapy are important in considering the contribution of vitamin D ingestion to changes in 25(OH)D concentrations (see Ref. 242 for a summary of multiple studies). Generally, vitamin D-associated hypercalcemia occurs only when extremely large doses of vitamin D (often several hundred-fold the recommended intake) are ingested (244,–257).
My response wasn’t to dissuade you from supplementing vitamin D. It’s to get you to test your level, ideally before (baseline) and after a few months of high dose to note the personal trend. The potential for overdose/underdose is extremely varied, but I have personally experienced problem at just 5000IU a day. As you can see from the links above, you can get tested at around $40 or even below when they run lab sales at which time you could purchase multiples at once at a low cost. This is much more affordable than going through the traditional route through a Dr’s office where you also have an additional copay for visits. Supplement based on your need, and again I don’t recommend supplementing D blindly at a very high dose long term without periodic testing. You also don’t want to stay deficient in the very important vitamin which PWP are very frequently deficient of.
"Generally, vitamin D-associated hypercalcemia occurs only when extremely large doses of vitamin D (often several hundred-fold the recommended intake) are ingested (244,–257)."
I had my annual checkup and my D3 was 110 ng/mL. I was on 2,500 IU/daily. Doctor told me to lower my daily intake to half the dose.
You’re welcome, it’s always better to know and verify your dosage effect than supplementing blindly when it comes to such an important vitamin/hormone such as D. Once you figure out the adequate dosage and wade out of deficiency then it comes down to periodic or even annual testing, and the affordable labs make it easier to track.
Thanks! Our FP requests the test every 6 months. Nurse draws blood and then sends the sample to Quest which is very near. We pay a very minimum since it's approved by BC/BS.
I have BC/BS myself and I had to pay $150 for a vitamin D test through the insurance. Though I haven't checked the last few years so it's possible they're now paying for the test, especially after Covid.
Excellent find! Although I had read it 4 years ago, I have forgotten its contents.
Thiamine, also known as vitamin B1, may benefit Parkinson’s patients. In 1999, low levels of free thiamine were detected in the cerebrospinal fluid of Parkinson’s disease patients.173 In 2013, researchers treated three newly diagnosed Parkinson’s patients with high-dose thiamine injections. Remarkably, the injections considerably improved the patients’ motor symptom deficits.174 Although only three subjects participated in this uncontrolled, informal clinical trial, the results corroborated very similar findings from another small trial in 2012.175
More recently, in 2015, an open-label clinical trial on 50 Parkinson’s disease patients showed that intramuscular injections of 100 mg of thiamine twice weekly led to significant and lasting improvements on a standardized Parkinson’s disease rating scale. Some participants—those with mild symptoms—had a complete clinical recovery. The benefits persisted throughout the follow-up period of up to about 2.2 years.176 In another open-label study, published in 2016, researchers treated 10 consecutive Parkinson’s patients with intramuscular 100 mg thiamine injections twice weekly without changing their medication regimens. Several measures of Parkinson’s disease symptoms improved significantly, and when the investigators increased the dosage of thiamine into the second month of treatment, the benefits became even more pronounced. Researchers speculated that the benefits of thiamine may arise from improvements in energy metabolism in surviving dopaminergic neurons in the substantia nigra.177 Additional clinical trials are needed to test whether oral thiamine, or thiamine derivatives such as benfotiamine, may have similarly beneficial effects.
No, Bolt, I replied to Smittybear7 regarding Life Extension's recommended supplements. One of them is Thiamine and copied and pasted their recommendation of B1.
The vitamin D test is a 25 OH d serum test. The reference range is 30 ~ 100 ng/ml. Below 30 ng/ml is generally considered insufficient. Below 20 ng/ml is generally considered deficient. Trying to stay in the upper half of the reference range is usually adequate unless you are actively trying to treat a specific health condition that responds to higher dose vitamin D in which case you may have to go above the top of the range.
Here is a human study that illustrates what I am describing in that they used 35,000 iu / day for 6 months in the trial participants :
If you are ever going to experiment in this way, it will require regular monitoring by your doctor of your 25 OH d level as well as your calcium levels at a minimum.
You can not go by people who say that they take 15,000 iu a day and never have problems because that may be the case for them, but we all respond differently to dosing. Where 10,000 iu /day may get some people around 40 ng/ml, it may put some people near or above the top of the reference range. Private mail in pin prick test can be had for around $80 or so.
If you are 60 years of age or older, chances are you can not get enough vitamin D from sun exposure any more because you have insufficient cholesterol in your skin to interact with the UV rays of the sun to get the vitamin D synthesis going in a meaningful way in your skin any more. Supplementing then becomes the main means of getting sufficient vitamin D. Also, even if you are young enough where you can still produce adequate D with sun exposure, If your shadow in the sun is longer than you are tall as might be seen in late fall, winter and early spring, depending on your location on the planet, you can not produce sufficient vitamin D from sun exposure.
Some people simply need more vitamin d than others to get their 25 OH d serum level to the upper half of the reference range. Look at the study that I linked to and look at the variation in 25 OH d serum levels after supplementing at 35,000 iu/day of vitamin D3 for 6 months and you quickly realize how differently vitamin D supplementing affects each person's vitamin D level. In some people that 35,000 iu/day dose didn't even get them to the top of the reference range and in others it got them well above the top of the range.
Thank you so much Art! You are a wealth of super useful information. I reviewed your other post and all of the links. Great stuff!
Although, you are kind of pulling me back towards taking the 10,000 IU/d of vitamin C with this first link ncbi.nlm.nih.gov/pmc/articl... it really cleaned up the psoriasis problems.
Higher daily doses may be particularly critical for controlling the activity of autoimmune disorders.
Estimations of daily requirements of vitamin D3 for patients with autoimmune disorders should take account of the functional consequences of genetic polymorphisms related to vitamin D metabolism. For instance, the polymorphic changes of the enzyme CYP27B1 associated with autoimmunity28,29 predictably originates a relative resistance to vitamin D, i.e., a higher level of circulating 25(OH)D3 required to achieve normal 1,25(OH)2D3 concentrations within the immune cells.
Doses ranging up to 40,000 IU/day of vitamin D3 are probably safe for healthy individuals,36,37 and enzyme polymorphisms affecting vitamin D metabolism may conceivably increase tolerability in patients with autoimmune disorders.
I have Hashimoto's, so always looking to address autoimmunity.
This information, along with that other document I had ncbi.nlm.nih.gov/pmc/articl... has convinced me to go ahead and add vitamin D. I will give strong consideration to testing (maybe I can get my doctor to test me now that I have a condition).
Data regarding the effects of vitamin D supplementation on Parkinson's disease progression is sparse. A case report from 1997 described a 50 year old patient with 13 years of PD symptoms somewhat responsive to levodopa therapy, bone abnormalities, low serum calcium and phosphorus and low serum vitamin D (52). Vitamin D3 supplementation at 4,000 IU daily of 25-hydroxyvitamin D3, roughly equivalent to 20,000 IU of vitamin D3 (53), and calcium supplements were added to his regimen and his lab values normalized. In addition, his parkinsonism significantly improved over the following year and he was able to reduce his levodopa by half (52). While this is an extreme case, it highlights the need for more study on the effects of vitamin D supplementation on PD symptoms. To date, only two small randomized, placebo-controlled trials have been done examining the effects of vitamin D supplementation on motor symptoms and progression in PD. As discussed above, Suzuki et al. randomized 114 PD patients to receive 1,200 IU/day of vitamin D3 or placebo for 12 months. The serum vitamin D level doubled for those in the intervention group and remained unchanged for the placebo group. H&Y stage was stable in the intervention group, while H&Y stage significantly worsened for the placebo group (+0.33) (94). In a second study in Iran, 120 PD patients with levodopa-induced dyskinesia were randomized to receive either 1,000 IU of vitamin D per day or placebo (95). At 3 month follow-up, there was no difference in levodopa-induced dyskinesia as measured by the UPDRS IV sub score and no difference in the UPDRS motor score, suggesting that vitamin D has no effect on dyskinesia. The follow-up time, however, was too short to determine if vitamin D supplementation influenced motor progression and the dose of vitamin D supplementation was low.
Both of these studies used low doses of vitamin D supplementation, which may have limited the potential to detect improvement in symptoms. A report in 2005 noted that 10–15 min of whole-body exposure to sunlight in the peak of summer can generate 10,000–25,000 IU of vitamin D3, concluding that the recommendations for vitamin D intake of 200–800 IU/day are likely very inadequate (96, 97). A study from 1977 showed that a daily intake of 10,000 IU daily resulted in serum vitamin D levels most similar to the subjects who were exposed to daily whole-body artificial ultraviolet light (53). One of the reasons often cited for giving lower doses of vitamin D supplementation is the concern for toxicity and hypercalcemia, however, multiple studies have shown that toxicity is rare and high serum levels of vitamin D are not strongly correlated with hypercalcemia (4, 98). When hypercalcemia occurs, it is often easily reversed (4, 98) One state psychiatric hospital in Cincinnati, Ohio offered all 4,700 patients admitted to the facility from 2011 to 2018 supplements of either 5,000 IU/d or 10,000 IU/d of vitamin D3, many of whom were on the supplements for over 12 months (4). Serum 25(OH) D levels were frequently above 100 ng/ml for patients taking doses of 10,000 IU/d, with a range up to 202 ng/ml. None of these patients developed hypercalcemia, nephrolithiasis or other adverse effects and the authors concluded that long-term supplementation at doses of 5,000 to 10,000 U/d appear safe (4). Given the large range of vitamin D supplementation that has been reported in the literature, and the low doses of supplementation provided in the two PD RCTs, more high quality studies with a range of doses are needed to determine if vitamin D is effective for PD motor symptoms and progression and at what doses.
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I couldn't do that, Rescuema. 
