I have been gathering information on different supplements for several of my friends who have PD. The list has grown to well over 50 supplements now so in order to make it manageable, I am trying to narrow the list down to either 5 or 10 supplements that seem to show the most evidence in the form of studies or lacking that, significant anecdotal evidence since these PD /supplement studies are fairly limited.
Vitamin D is easily in that top 5 list based mainly on human studies. I will post the study links along with a very brief description of each study below.
A quick thought on vitamin D and how it is measured in people. It requires a blood test that determines your 25 (OH) d serum level . The reference range for 25 (OH) d is 30 to 100 ng/ml. If you fall below 30 ng/ml, but above 20 ng/ml you are considered to be insufficient in your vitamin D level. If you fall below 20 ng/ml you are considered to be deficient. Many studies suggest it is better to be in the upper half of the reference range and some cancer studies suggest the 60 to 75 ng/ml range as optimal, however, other studies for other health issues suggest even closer to the top of the range (100) or above the top of the range. Generally speaking, if you are actively trying to treat a disease, the upper half of the range and beyond may be needed and of course with your doctors approval and supervision. More recent studies are showing that doses of vitamin D that were previously thought to be toxic are actually healthful, so 400 iu per day is no longer a realistic daily value. Because serum 25 OH d levels vary significantly from person to person and because the dose required to get your serum level into the reference range also varies significantly, blood testing is needed to know your serum level before and after supplementing in order to determine what dose will get you to where you want to be within that reference range. The test for vitamin d can be done at your doctor's office or it can be done by mail using one of the pin prick tests from several on line vendors for under a hundred dollars per test depending on which vendor you choose. Doctors should be aware that vitamin D can have a positive impact on PD, so they should be willing to run those tests at your regular visits.
The other way to increase your vitamin D besides supplementing is to go out in the sun and expose as much skin as possible for specific periods of time when the sun is highest in the sky or directly over head. This will help during a major portion of the year, but, as long as your shadow in the sun is longer than you are tall, your body will not be able to make enough vitamin D from the sun exposure. Another point that doctors don't mention is that as we get older, our bodies ability to convert the uv rays from the sun to vitamin D by reacting with cholesterol in the skin, declines steadily. Given that PD tends to affect senior citizens more than younger people, supplementing with vitamin D-3 is likely the best way to get your serum level into the upper half of the reference range (30~100 ng/ml).
This first study suggests that vitamin D may be helpful for some people with PD and draws a correlation between serum 25 OH d level and PD severity.
This next study in Iranian patients with PD suggests that most have serum levels that are too low and the lower the serum level, the more increased certain symptoms are.
This next important double blind, placebo controlled study suggests that daily vitamin D supplementation may slow disease progression of certain aspects of PD.
This next study is a pilot study that used ultra high doses of vitamin D, that were previously believed to be toxic, but not in this study that treated psoriasis and vitiligo patients to good effect.
This next one is an interesting anecdote as opposed to a study as reported to Dr. Cannell at the Vitamin D Council.
Dear Dr. Cannell,
About four years ago, I was diagnosed with Parkinson’s disease (PD). Looking back, I could see that my illness had been slowly developing over the course of at least twenty years. By the time I was diagnosed, my symptoms began to worsen quickly. I was experiencing extreme imbalance issues that impaired my ability to walk as well as painful muscle cramping known as dystonia.
I also began to drool during the day and at night while sleeping. Coincidentally, I started taking vitamin D 50,000 IU/day, because I thought it might help treat the flu. I was greatly surprised within several hours after taking vitamin D that these major PD symptoms began to clear up. It has been two years since I accidentally discovered the miracle of vitamin D, and I now take 10,000 IU/day and keep my vitamin D level around 80.
I’m still amazed. I still have Parkinson’s, but my symptoms are less severe.
Paul, California
Dear Paul:
A number of readers have written me that they had a very rapid response to vitamin D. In the standard genomic model of vitamin D’s metabolism, it makes no sense. However, Professor Bruce Hollis recently alerted me to an important paper.
Gibson CC, Davis CT, Zhu W, Bowman-Kirigin JA, Walker AE, Tai Z, Thomas KR, Donato AJ, Lesniewski LA, Li DY. Dietary Vitamin D and Its Metabolites Non-Genomically Stabilize the Endothelium. PLoS One. 2015 Oct 15;10(10):e0140370.
This paper basically shows that the parent compound, vitamin D, has a very rapid effect on endothelial cells. Endothelial cells are a thin lining of cells that make up the innermost lining of vessel walls.
The newly discovered effect occurs so rapidly that it could not be via genetic function. The vitamin D signaling pathway teaches us that vitamin D is converted to 25(OH)D in the liver and that 25(OH)D is circulated around the body and absorbed into cells where the cells transform 25(OH)D into a steroid hormone, calcitriol, which helps regulate gene transcription. This paper does not dispute this pathway, but adds to it, finding cholecalciferol by itself may plug up holes in the lining of blood and lymph tissues.
As the authors state, vitamin D acts very quickly to “stabilize barrier structure and function, thereby reducing vascular leak into the surrounding tissues. This new observation may explain, in part, the broad associations between vitamin D and many diseases.”
Professors Bruce Hollis and Carol Wagner were, to the best of my knowledge, the first to recognize that the parent compound has important effects, independent of the liver’s transformation into 25(OH)D.
Hollis BW, Wagner CL. Clinical review: The role of the parent compound vitamin D with respect to metabolism and function: Why clinical dose intervals can affect clinical outcomes. J Clin Endocrinol Metab. 2013 Dec;98(12):4619-28. doi: 10.1210/jc.2013-2653. Epub 2013 Oct 8. Review.
If they are right, it serves as an explanation as to why some people seem to notice vitamin D works very quickly. It also explains why vitamin D should be taken daily, not weekly or monthly.
Based on the above abstracts, studies and anecdote, it certainly seems like a good idea to make sure you are vitamin D replete and especially if you have PD . Vitamin D is easy to get and has a very good safety profile while being inexpensive. Many people are insufficient or deficient when it comes to vitamin D. Regular testing is the best way to determine how much vitamin D you will need to take in order to get into the upper half of the reference range and your doctor should be willing to help you do this!
Thank you so much. I wish we had known this while my husband was still alive. He was told by the Dr that his Vit D status was all right and I couldn't understand it as he was always indoors. So I gave him a daily dose of Vit D but obviously not enough.
thanks for taking the time to write this loooooong post. so much good info! ive been taking vitamin d 400 u/day. but, i think i want to see what my levels are now.
Agree with all previous comments. Thank you so much for taking your time to write this useful post. Would be interesting to know what are the rest of supplements on your top five list. Thanks again.
I was told or read somewhere that we also need to take fish oil or coconut oil along with Vitamin D for it to work. True? I don't know. I also wonder if vitamin D and vitamin D3 are the same thing...... any thoughts. And thank you for sharing all that very interesting info.
in reply to
The cofactors for vitamin d are usually magnesium, calcium, K-2, zinc, vitamin A and some people include boron, which I agree with. Senior men may get enough calcium from food intake. Most retailers only sell vitamin D-3 and most current studies are based on D-3 not D-2.
I don't want to knock anything but thought some extra info might be useful when taking Vitamin D3. I did for a while and it caused calcification, which I think is implicated in Parkinsons? This is from the magnesium advocacy group:
There are actually three metabolic transactions (under the Skin (cholesterol), in the Liver and in the Kidney) that convert that Cholecalciferol (pre-Hormone-D form) >> Calcidiol (Storage form, aka 25[OH]) >> Calcitriol (Active form, aka 1,25[OH]2). All of those transactions can only happen when Magnesium is present in proper amounts.
When there is too much calcium in the blood, the body keeps the Storage Vit-D level low for two reasons: 1) there’s too much Calcium already in the blood; and 2) there’s not enough Magnesium to flip the Storage-D into Active-D
High doses of Vit-D, again — a very strong Hormone, puts significant demands on the Magnesium stores of our body to convert it to its Active status.
My PK dad doesn't get enough sun, I'm giving him cod liver oil with its vitamin D natural, not added. And lots of magnesium!
Yes, this is exactly why vitamin D has cofactors! Many senior men get enough calcium from food. The magnesium, K-2 and boron can help calcium to get to the bones instead of soft tissues. One problem with calcium supplements is that they are often in doses that are larger than the body was ever meant to handle all at once and this can create problems.
Fanconi syndrome is a defect of the proximal tubules of the kidney and is associated with renal tubular acidosis. Taking ergocalciferol orally is effective for treating hypophosphatemia associated with Fanconi syndrome.
A
Hyperparathyroidism due to Low Vitamin D Levels
Some patients may develop secondary hyperparathyroidism due to low levels of vitamin D. The initial treatment for this type of hyperparathyroidism is vitamin D. For patients with primary or refractory hyperparathyroidism, surgical removal of the parathyroid glands is commonly recommended.
Studies also suggest that vitamin D supplementation may reduce the incidence of hypoparathyroidism following surgery for primary hyperparathyroidism (partial or total removal of the parathyroid glands).
A
Hypocalcemia due to Hypoparathyroidism
Hypoparathyroidism (low blood levels of parathyroid hormone) is rare, and is often due to surgical removal of the parathyroid glands. High oral doses of dihydrotachysterol (DHT), calcitriol, or ergocalciferol can assist in increasing serum calcium concentrations in people with hypoparathyroidism or pseudohypoparathyroidism.
A
Osteomalacia (Adult Rickets)
Adults with severe vitamin D deficiency lose bone mineral content (hypomineralization) and experience bone pain, muscle weakness, and osteomalacia (soft bones). Osteomalacia may be found among older adults with vitamin D–deficient diets, people with decreased absorption of vitamin D, people with inadequate sun exposure (such as those living in latitudes with seasonal lack of sunlight), patients with gastric or intestinal surgery, patients with aluminum-induced bone disease, patients with chronic liver disease, or patients with kidney disease with renal osteodystrophy.
Treatment for osteomalacia depends on the underlying cause of the disease and often includes pain control and orthopedic surgical intervention, as well as vitamin D and phosphate binding agents.
A
Psoriasis
A number of different approaches are used in the treatment of psoriasis skin plaques. Mild approaches include light therapy, stress reduction, moisturizers, or salicylic acid to remove scaly skin areas. For more severe cases, treatments may include UV-A light, psoralen plus UV-A light (PUVA), retinoids such as isotretinoin (Accutane), corticosteroids, or cyclosporine (Neoral, Sandimmune). The synthetic vitamin D3 analogue calcipotriene (Dovonex) appears to control skin cell growth and is used for moderately severe skin plaques, particularly for skin lesions resistant to other therapies or located on the face. Vitamin D3 (tacalcitol) ointment has been reported as being safe and well-tolerated.
High doses of becocalcidiol (a vitamin D analogue) used on the skin may be beneficial in the treatment of psoriasis.
A
Rickets
Rickets develops in children with vitamin D deficiency due to a vitamin D–deficient diet, a lack of sunlight, or both. Infants fed only breast milk (without supplemental vitamin D) may also develop rickets. Although now rare, partially due to the availability of vitamin D–fortified milk, there has been a recent increase in rickets among children in latitudes with periodic, seasonal lack of sunlight. Ergocalciferol or cholecalciferol is effective for treating vitamin D deficiency rickets. Calcitriol should be used in patients with renal (kidney) failure. Treatment should be under medical supervision.
A
Muscle Weakness/Pain
Vitamin D deficiency has been associated with muscle weakness and pain in both adults and children. Limited research has reported vitamin D deficiency in patients with low-back pain, and supplementation may reduce pain in many patients.
B
Osteoporosis (General)
Without sufficient vitamin D, inadequate calcium is absorbed and the resulting elevated parathyroid (PTH) secretion causes increased bone resorption. This may weaken bones and increase the risk of fracture. Vitamin D supplementation has been shown to slow bone loss and reduce fracture, particularly when taken with calcium.
B
Renal Osteodystrophy
Renal osteodystrophy is a term that refers to all of the bone problems that occur in patients with chronic kidney failure. Oral calcifediol or ergocalciferol may help manage hypocalcemia and prevent renal osteodystrophy in people with chronic renal failure undergoing dialysis.
B
Anticonvulsant-Induced Osteomalacia
Supplementation with vitamin D2 has been reported to reduce seizure frequency in initial research. Further research is needed to confirm these results.
C
Breast Cancer Prevention
High-dose vitamin D supplementation may be associated with a slightly reduced risk of developing breast cancer. Additional research in this area is warranted.
C
Cancer Prevention
Limited research suggests that synthetic vitamin D analogues may play a role in the treatment of human cancers. However, it remains unclear if vitamin D deficiency raises cancer risk, or if an increased intake of vitamin D is protective against some cancers. Until additional trials are conducted, it is premature to advise the use of regular vitamin D supplementation to prevent cancer.
C
Colorectal Cancer
Data from a meta-analysis suggest that supplemental vitamin D may prevent the development of colorectal cancer. More research is needed in this area.
C
Corticosteroid-Induced Osteoporosis
Some evidence implies that steroids may impair vitamin D metabolism, further contributing to the loss of bone and development of osteoporosis associated with steroid medications. There is limited evidence that vitamin D may be beneficial to bone strength in patients taking long-term steroids.
C
Diabetes (Type 1/Type 2)
Type 1 diabetes: It has been reported that infants given calcitriol during the first year of life are less likely to develop type 1 diabetes than infants fed lesser amounts of vitamin D. Other related studies have suggested using cod liver oil as a source of vitamin D to reduce the incidence of type 1 diabetes. There is currently insufficient evidence to form a clear conclusion in this area.
Type 2 diabetes: In recent studies, adults given vitamin D supplementation were shown to improve insulin sensitivity. Further research is needed to confirm these results.
C
Fall Prevention
Multiple trials have found conflicting results for the effects of vitamin D in the prevention of falls. More studies are needed.
C
Hepatic Osteodystrophy
Metabolic bone disease is common among patients with chronic liver disease, and osteoporosis accounts for the majority of cases. Varying degrees of calcium malabsorption may occur in patients with chronic liver disease because of malnutrition and vitamin D deficiency. Oral or injected vitamin D may play a role in the management of this condition.
C
High Blood Pressure (Hypertension)
Low levels of vitamin D may play a role in the development of high blood pressure. It has been noted that blood pressure is often elevated under the following conditions: during the winter season, at a further distance from the equator, and in people with dark skin pigmentation (all of which are associated with lower production of vitamin D via sunlight). However, evidence is not clear, and a comparison with more proven methods to reduce blood pressure has not been conducted. Patients with elevated blood pressure should be managed by a licensed healthcare professional.
C
Hypertriglyceridemia
There is insufficient evidence in this area.
C
Immunomodulation
Preliminary human evidence suggests that vitamin D and its analogues, such as alfacalcidol, may act as immunomodulatory agents. More studies are needed to confirm these results.
C
Mortality Reduction
Intake of vitamin D may be associated with a reduction in total mortality. Additional evidence is needed to confirm this association.
C
Multiple Sclerosis (MS)
Scientists have detected MS rates to be lower in areas with greater sunlight and higher consumption of vitamin D–rich fish. Preliminary research suggests that long-term vitamin D supplementation decreases the risk of MS; however, additional research is necessary before a firm conclusion can be reached.
C
Myelodysplastic Syndrome
There is insufficient evidence in this area.
C
Osteogenesis Imperfecta (OI)
OI is a genetic disease that consists of unusually fragile bones that break easily (often under loads that normal bones bear daily) because of a malfunction in the body's production of collagen. Proper calcium and vitamin D intake is essential to maintaining strong bones.
C
Osteoporosis (Cystic Fibrosis Patients)
Osteoporosis is common in patients with cystic fibrosis (because of fat malabsorption, which leads to a deficiency of fat-soluble vitamins such as vitamin D). Oral calcitriol administration appears to increase the absorption of calcium and decrease parathyroid concentrations.
C
Proximal Myopathy
There is insufficient evidence in this area.
C
Rickets (Hypophosphatemic Vitamin D-Resistant)
There are insufficient data to support a role of vitamin D in this condition.
C
Seasonal Affective Disorder (SAD)
Seasonal affective disorder (SAD) is a form of depression that occurs during the winter months, possibly due to reduced exposure to sunlight. Some research found vitamin D to be better than light therapy in the treatment of SAD. Further studies are necessary to confirm these findings.
C
Senile Warts
In preliminary research, senile warts have been treated with topical vitamin D3.
C
Skin Pigmentation Disorders (Pigmented Lesions)
Application of vitamin D3 ointment on the skin, in combination with intense pulsed-radio frequency, may be beneficial in the treatment of pigmented lesions associated with neurofibromatosis 1 (NF1).
C
Tooth Retention
Oral bone and tooth loss are correlated with bone loss at non-oral sites. Research suggests that intake levels of calcium and vitamin D aimed at preventing osteoporosis may have a beneficial effect on tooth retention.
C
Vitamin D Deficiency (Infants and Nursing Mothers)
High-quality clinical trial evidence suggests that high doses of supplemental vitamin D provided to breast feeding mothers may improve the vitamin D status of both mother and child. More research is needed to confirm these findings.
C
Weight Gain (Postmenopausal)
Vitamin D supplementation (in combination with calcium) may have an effect on post-menopausal weight gain. Evidence suggests that this may be particularly true in women consuming inadequate calcium and warrants further research.
C
Muscle Strength
Oral cholecalciferol does not appear to increase muscle strength or improve physical performance in healthy older men who are not vitamin D deficient.
D
Prostate Cancer
There is preliminary evidence based on laboratory and human studies that high-dose vitamin D may be beneficial in the treatment of prostate cancer. This area is under active investigation, but clear evidence of benefit is not yet available.
D
Uses Based on Tradition or Theory
Actinic keratosis, Alzheimer's disease–associated hip fractures, ankylosing spondylitis, autoimmune disorders, Graves disease, hyperparathyroidism in renal dialysis, hypocalcemia, hypocalcemic tetany, kidney transplant–related bone loss, metabolic disorders (metabolic syndrome), nervous system disorders (hemichorea), osteitis fibrosa in dialysis, rheumatoid arthritis, scleroderma, squamous cell carcinoma, systemic lupus erythematosus, vaginal disorders (atrophy), vitiligo.
DOSING
Adults (18 Years and Older)
• Vitamin D is included in most multivitamins, usually in strengths from 50 IU to 1,000 IU as softgels, capsules, tablets, and liquids. The Adequate Intake (AI) levels have been established by the U.S. Institute of Medicine of the National Academy of Sciences. Recommendations are: 5 mcg (200 IU or International Units) daily for all people (males, females, pregnant/lactating women) under the age of 50 years old. For all people 50 to 70 years old, 10 mcg/day (400 IU) is recommended. For those who are over 70 years old, 15 mcg/day (600 IU) is suggested. Some authors have questioned whether the current recommended adequate levels are sufficient to meet physiologic needs, particularly for people deprived of regular sun exposure. The upper limit (UL) for vitamin D has been recommended as 2,000 IU daily because of toxicities that can occur when taken in higher doses.
• Not all doses have been found effective for conditions that have been studied. However, ergocalciferol has been used in an oral dose of 400 to 800 IU/day (sometimes higher doses are used in conjunction with calcium) for osteoporosis prevention and treatment.
• Calcitriol has been used in an initial oral dose of 0.25 mcg/day; dosing may be increased by 0.25 mcg/day at four- to eight-week intervals in patients with hypocalcemia from chronic dialysis.
• Dihydrotachysterol has been used in an oral initial dose of 750 mcg (0.75 mg) to 2.5 mg/day for several days for the treatment of hypoparathyroidism. A maintenance dose is typically 200 mcg (0.2 mg) to 1 mg/day. Ergocalciferol has also been used in an oral dose of 50,000 to 200,000 IU units daily concomitantly with calcium lactate 4 grams, six times per day.
• Rickets may be treated gradually over several months or in a single day's dose. Gradual dosing may be 125 to 250 mcg (5,000 to 10,000 IU) taken daily for two to three months, until recovery is well established and alkaline phosphatase blood concentration is close to normal limits. Single-day dosing may be 15,000 mcg (600,000 IU) of vitamin D, taken by mouth divided into four to six doses. Intramuscular injection is also an alternative for single-day dosing. For resistant rickets, some authors suggest a higher dose of 12,000 to 500,000 IU/day, although this has not yet been proven effective.
Children (Younger than 18 Years)
• Adequate Intake (AI) levels have been established by the U.S. Institute of Medicine of the National Academy of Sciences. The recommendation from birth until 50 years old is 5 mcg/day (200 IU or International Units per day). Children older than 1 year should not exceed the upper limit (UL) of 50 mcg (2,000 IU) per day; children younger than 1 year should not exceed the UL of 25 mcg (1,000 IU) per day. Vitamin D is possibly unsafe when used orally in excessive amounts, with adverse effects including hypercalcemia (high blood calcium levels). Some authors have questioned whether the current recommended adequate levels are sufficient to meet physiologic needs, particularly for people deprived of regular sun exposure. A 2008 review recommends 400 IU/day for all infants and children, including adolescents, based on evidence from new clinical trials and the historical precedence.
• Not all doses have been found effective for conditions that have been studied. However, for hypoparathyroidism, ergocalciferol has been used orally in an initial dose of 8,000 units/kg/day for one to two weeks. For maintenance, a dose of 2,000 units/kg/day has been used.
• Rickets may be treated gradually over several months or in a single day's dose. Based on one clinical trial, a single dose of 600,000 IU of oral vitamin D3 was comparable to a dose of 20,000 IU per day of oral vitamin D3 for 30 days. Gradual dosing may be 125 to 250 mcg (5000 to 10,000 IU) taken daily for two to three months, until recovery is well established and alkaline phosphatase blood concentration is close to normal limits. Single-day dosing may be 15,000 mcg (600,
Liver disease is associated with low vitamin d levels and low vitamin d levels are associated with increased mortality in people with liver disease. Being that you have liver disease and you are interested in vitamin D, you should ask your doctor to test your 25 (OH) d level to see where you are in the range.....you may not need it. That is probably the best approach for everyone because there are a few health conditions where vitamin D might be contraindicated such as sarcoidosis.
When you talk to your doctor, you might also ask about taking melatonin at night.
Vitamin D deficiency is associated with mortality in patients with advanced liver cirrhosis.
Stokes CS1, Krawczyk M, Reichel C, Lammert F, Grünhage F.
Author information
Abstract
BACKGROUND:
Chronic liver disease is the fifth most common cause of mortality in Europe. Recently, vitamin D deficiency has been associated with an increased risk of mortality in the general population. As patients with advanced liver disease frequently exhibit vitamin D deficiency, we assessed for a possible association of vitamin D deficiency with survival in a cohort of patients with advanced liver disease.
METHODS:
Sixty-five patients with liver cirrhosis (median age, 58 years; range, 19-76 years; 66% male; Child-Pugh stage C, 46%) were included in our prospective single-centre survival study. Serum 25-hydroxyvitamin D concentrations were measured by chemiluminescence immunoassay. The optimal cut-off was determined using receiver operating characteristic (ROC) and Kaplan-Meier analysis. Chi-square statistics and multivariate binary logistic regression analysis were also conducted.
RESULTS:
Median serum vitamin D levels were 8·2 ng/mL (range <4·0-95·8 ng/mL). Overall, 48% of patients (31/65) died during a 24-month follow-up period. ROC analysis determined a vitamin D level of 6·0 ng/mL as optimal cut-off for discriminating survivors from nonsurvivors. Kaplan-Meier analysis of survival confirmed low vitamin D levels as significant predictor of death (P = 0·012). Finally, multivariate analysis identified low vitamin D levels (OR = 6·3; 95% CI, 1·2-31·2; P = 0·012) and MELD scores (OR = 1·4; 95% CI, 1·2-1·7; P < 0·001) as independent predictors of survival.
CONCLUSION:
Low vitamin D levels are associated with increased mortality in patients with advanced liver disease. Thus, serum levels of vitamin D might represent a critical marker of survival in advanced liver cirrhosis.
One thing about vitamin D that I probably should have emphasized is that some people are able to get to to the upper half of the reference range using only 5,000 iu of vitamin D per day, but some people may require 20,000 iu or more per day to get there. So it is not so much the dose you take that is important as it is to be tested to determine how much it will take each individual to get your 25 (OH) d serum level to the upper half of the reference range of 30 ~ 100 ng/ml.
Keep in mind that in this study that gave 25 people 35, 000 iu vitamin D per day for 6 months (a dose that was previously thought to be toxic), some people only got to the 75 ng/ml area while others got up to the 170 ng/ml area. From this unusual study, you can get a clearer idea of just how much a particular dose can vary in its ability to get your serum 25 (OH) d up to the level you want. It is also worth noting that most of the study participants were vitamin D insufficient (less than 30 ng/ml) at the start of the study. This low level may be quite comparable to PWPs since the majority are already or are very close to senior citizenship , meaning their ability to convert UV rays from the sun in their skin is greatly diminished.
So it is not so much an exact dose as it is taking whatever amount is required to get your 25 (OH) d serum level to where you want it. Some people simply require a much greater amount of vitamin D to do that than other people and this is why testing is so important if you are trying to get every potential benefit from vitamin D that it can offer PWPs! Please don't forget the vitamin D cofactors as they will help in the quest to get maximum benefit from the vitamin D that you take!
Art
This is a short article that explains very briefly why magnesium is a vitamin D cofactor that helps insure you get the most from your vitamin D. Not enough magnesium and you may not get all of the health benefits that vitamin D has to offer PWPs. It also lists some interesting symptoms to help you know when you are low on magnesium. Magnesium and vitamin D are both healthful, but together they are synergistic toward human health!
I was able to convince one of my friends with PD to start taking vitamin D, magnesium and a B-vitamin multi which contained a small amount of B-1 starting about a year and a half to 2 years ago. I showed him many vitamin D studies including the vitamin D study where patients who took vitamin D for the 12 month study deemed to have no increase in many PD symptoms. At that time his hand tremors and lower lip tremors were quite noticeable even when fully medicated. His voice was also slightly weaker than what it used to be and he complained regularly about his jaw feeling tired. He would occasionally drool and he was starting to shuffle when walking.
Over the past year I have noticed that his hand tremors and lower lip tremors have slowly reduced in intensity to the point now, where if you didn't know he had PD, you would not think he did! The shuffling walk also reduced
When I recently talked to him about this, I was quite surprised by his responses to my questions. When I told him that he seemed much better in terms of "apparent motor PD symptoms", he told me that he actually thought he was worse than two years ago! I asked him how could that be as his hand tremors were almost completely gone, his lower lip tremor was completely gone and he doesn't drool or shuffle anymore? His answer was that he did not remember his hand tremors being that bad or his lip tremor or drooling or shuffling issues. At that point a light went on in my mind, and it suddenly became quite clear to me why Dr. Costantini insists on his patients making the two videos before beginning his treatment! I told my friend that he was definitely much better than how he was two years ago and he looked at me as though I was just making it up or just trying to make him feel better about himself! He didn't say any more about it during that visit, but apparently what I had said made him think about it further because he called his daughter that night and told her what I had told him and he wanted to know what she thought. She said, ' dad, this is the best I have seen you in many years, so yes, I would say, Art is correct!
He wasn't satisfied with his daughter's answer, so he called another long time friend and told him what I had said. His friend told him that actually, the only clue that he could see that might be considered a PD symptom is the fact that my friend gets up slowly after being seated for awhile such as after a meal at a restaurant. He told my friend that he no longer noticed the significant hand tremors, lower lip tremor, drooling or shuffling that was readily apparent two years ago! About this, I told my friend that yes, you do get up slowly after you have been seated for awhile, but I also told him that he is 78 going on 79 and carrying more than average weight......two things likely to suggest that you will get up slowly!
On my friend's next visit to his neurologist that same week, his neurologist told him that vitamins and supplements do absolutely nothing to help PD symptoms, but toward the end of the visit, his doctor told him that if they went out together in a group for dinner and if they were sitting right next to each other, he would not know that my friend even had PD! That is a far cry from his symptoms of two years ago! His hand tremors were such that they would start shaking so much that he would put his hands in his shorts pockets so others might not notice how bad they were shaking, but then they would continue to shake in his pockets so then you could here his keys and change jangling around and it drew even more attention. Needless to say, my friend is continuing with the vitamin D, magnesium and B-vitamin multi! As regards Dr. Costantini's protocol, my friend's neurologist told him that he had never heard of the doctor or his clinic and had never before seen the studies I had sent with my friend to show to his doctor and based on that, he said it was therefore worthless! He told my friend that if he wanted to go ahead and take thiamine that he could, but that it would do absolutely nothing for his PD and was a complete waste of time! He said that if it really worked, pharmaceutical companies would be all over it and would already be selling it! The problem with his idea is that thiamine is not patentable and as such, there is no big money to be made on it for the pharmaceutical companies.
Well this is only an anecdotal report, but it seemed worth mentioning all the same. Now if I can just convince this friend to try the high dose thiamine!
It is so true that we forget symptoms that have disappeared. The other day I suddenly realised I was filing papers and right side outing clothes with no problem, when a year ago it was a daunting and frustrating task.
I wish we could get one powder made with magnesium, vit d, b1 , NAC and mannitol, and just be able to take one drink a day! (I don't take those vitamins myself but I'm throwing them in for others!!). I wonder if a compounding pharmacy would do it?
The magnesium, mannitol and B-1 would be easy enough to mix bulk quantities in the proper proprtions and this would mean being able to avoid all of the fillers and gelatin caps! I would think that you would have to use magnesium carbonate in order for the taste to be tolerable. Magnesium citrate would be another consideration, but it is probably a little stronger tasting than the carbonate form. The thiamine is fairly bitter so the mannitol would help to offset that issue.
You could probably put those three pure powder ingredients into a large size sports drink and take two appropriately sized shots of that per day while keeping the bottle in the refrigerator in between uses.
NAC is likely only tolerable in capsule form because of the sulphur smell/taste. Most of the vitamin D supplements are in soft gel form and are so small, they are easy to take already.
Art
…daily supplementation with 1200 IU vitamin D3 for 12 mo significantly prevented the deterioration of PD….academic.oup.com/ajcn/artic.... as measured with the HY stage, UPDRS part II and total, and some domains of the PDQ39, with no apparent increase in risk of hypercalcemia or other adverse events during the study period. A point estimate of the number needed to treat was 6 patients for no worsening or improvement in the HY stage, which was considered very effective. To the best of our knowledge, this is the first randomized trial to examine the effects of vitamin D3 in patients with PD. However, a meta-analysis showed that supplemental vitamin D for older adults who participated in randomized controlled trials consistently showed beneficial muscle effects on strength and balance (27). Therefore, it cannot be distinguished whether vitamin D supplementation specifically delays the progression of PD or whether it just nonspecifically improves muscle strength and balance in older adults.
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It seems that under the circumstances (PD), doctors should test their patients 25 (OH) d status as standard operating procedure.
Fantastic review. And, me too: great results on Vit D for treating low normal labs!
An important point I neglected to mention above is that in the US, serum 25 (OH)d levels are measured as ng/ml, but other countries may use nmol/L as their standard. I only gave the reference range for the US, ng/ml, as 30~100 ng/ml. Here is a calculator to convert one to the other. The equivalent to 30~100 ng/ml would be 75~250 nmol/L
Or you can just multiply ng/ml x 2.5 to convert to nmol/L or divide nmol/L x 2.5 to get ng/ml.
I am sorry for any confusion this may have caused!
Art
The following article highlights how common osteoporosis is in PWPs and briefly discusses the need for vitamin D to help offset the fact that PWPs are often deficient or insufficient when it comes to vitamin D, which can compound the problem of osteoporosis! Just another reason to be sure you are vitamin D sufficient!
It has been awhile since I added to this post, but I thought this new study was worth mentioning and adding.
This new vitamin D study suggests that low serum levels of the active form of vitamin D in PWPs may increase your chances of falling, insomnia, depression and anxiety :
All of this just adds further to the idea that it is better for PWPs to make sure they are replete with vitamin D as opposed to insufficient or deficient. All four of the above health issues are 4 things that every PWP would like to avoid if at all possible and vitamin D may be helpful in that effort!
To further highlight the significance of vitamin D in PWPs, below is a link to a new abstract (October 2019) that essentially adds further confirmation to much of what was shown in the studies in the original post at the upper end of this page. Namely that vitamin d significantly correlates with falls and some non-motor symptoms such as anxiety, depression, sleep quality and insomnia. Here is a link to that very brief abstract :
As far as AMLA intake is concerned, Dr. Mischley answered my question: "Poorly studied, not my recommendation." I have purchased two bottles though and I am going to have my husband finish them. However, AMLA is available on their pharmacy.
My feeling is that the majority of senior men get enough calcium from the food they eat .
That 34 item list is not only not doable for the majority of people, but that recommendation of 2,400 mg of NAC per day is going to upset more than a few stomachs! They call for 3,000 mg of NAC if OCD is involved! My stomach is hurting just thinking about that 3 gram dose as I used to take 2,400 mg day as an experiment until my stomach just couldn't take it any more. The 2,000 mg per day recommendation for ginger extract is likely to be about 10 capsules all by itself. That is a lot of beta carotene per day at 100,000 ~ 150,000 and while it is a safer way to get vitamin A as the BC is converted to vitamin A, vitamin A and vitamin D compete and this list had only 4,000iu vitamin D that I noticed. Two to 4 tablespoons of lecithin is a lot per day and if your cholesterol is in range, this may be a problem if your cholesterol goes too low. Cholesterol has multiple uses in the body and while too much may be bad, too little is also bad! Recommending 9 grams of combined EPA/DHA, really, 9 grams! Based on what studies! Four grams is doable and has multiple studies to confirm, but 9 grams, might I suggest wearing diapers on this protocol? These are very good anti-inflammatories and very good for PWPs, but that dose is almost guranteed to give a person diarrhea!
While the supplements on the list are good, taking it daily will be expensive and next to impossible to keep up with or at least that is what I think.
I haven't updated this thread in quite awhile and thought this recent (May 2020) review article of vitamin D and PD was worth posting as it clearly illustrates that vitamin D is still very relevant for PWP for multiple reasons.
Importantly in this article they emphasize that there are vitamin d receptors in the substantia nigra as well as the enzyme (1α-hydroxylase) that converts vitamin D to its active form, suggesting a use for vitamin D in the substantia nigra.
It has been previously reported in the literature that vitamin D may help to reduce the frequency of falls in PWP and to add a bit of anecdotal evidence to that idea, one of my PD friends who started on vitamin D after testing at only 19 ng/ml after his neurologist had told him he didn't need to test for or take vitamin D! He went to his GP and asked to have his 25 OH d level tested and got the 19 ng/ml result. The reference range is 30 ng/ml ~ 100 ng/ml so he was clearly deficient even though his usual attire is shorts and a short sleeve shirt and he spends a significant amount of time in the sun each day. In any case, the addition of vitamin D to his regimen seems to have resulted in a very significant reduction in falls for him.
The recent Italian report that suggests people who have a 25 OH d level of 80 ng/ml or greater tended not to die from Covid-19 compared to those with lower levels gives a little more incentive to PWP that they make sure that they are replete with vitamin D!
Art, thank you for all this info on Vit D3. I'm looking for help for John's very low energy and thought I'd seen somebody post on here that high D3 had provided energy for him, so in my search I found your post. I'm confused about the units for the test results. You stated, "The reference range for 25 (OH) d is 30 to 100 ng/ml." All of John's results show 44, 46, or 51 pg/mL (NOT ng/mL). When I look up the difference I'm told that ng/mL is 1000 times greater than pg/mL. Do different labs use different reporting units, or what?
Are you sure you have that measurement correct in terms pg/ml or is it nm/l? When you convert that to ng/ml, it comes out to .051 ng/ml and that would be the lowest 25 OH d level I have ever heard of. What country are you in? The other common measurement for 25 OH d is nm/l. If that is the correct measure 46 nm/l = 18.4 ng/ml and that is straight up deficient at below 20 ng/ml, but fairly typical in seniors so that number seems more plausible assuming no high dosing of cholecalciferol. The reference range for 25 OH d is 30 to 100 ng/ml or 75 to 250 nm/l. If the doctor did not say anything to the both of you about this result, that is not good, because it is unhealthy to be below the reference range!
The low energy issue can be from multiple causes or combination of causes and PD itself or the medications would be worth looking at as well as a low vitamin B-12 or low vitamin B complex as a group, and anemia out of many causes.
We are in the States, and the Lab was Quest Diagnostics, and it is listed as pg/mL and says reference range is 18-72 pg/mL. Strange.
Do you remember reading that someone posted that the Vit D boosted his energy? He does already get some Vit B's but I saw someone mentioned B9, which is not already covered in what he takes. One thing I've not gotten the doc to order yet is TIBC.
Was it a 25 OH d test or another form of vitamin D?
B-9 is folic acid and can increase energy, but long term use of folic acid might not be the safest. Folate and folinic acid may be a better choice if you decide to go that way.
I think these are testing the active form of vitamin D, known as 1,25-dihydroxy Vitamin D which is measured in pg/ml.
This is not the same as a 25 OH d test, which is the standard test for measuring vitamin D in people.
The following data sheet shows the reference range for males 16 or older to be 18 – 64 pg/mL. The difference must be different labs having slightly different reference ranges.
Another reason for PwP men to consider vitamin D supplementing. Orthostatic Hypotension (OH) is common in PwP and can be brought on by multiple causes such as PD itself, some of the drugs prescribed for PD such as Sinemet & Ropinirole and age to name only a few potential causes or contributors.
As is already well established, PwP in general have low vitamin D levels and this new 2021 study shows that older men who are vitamin D deficient had an increased risk of OH within one minute of standing!
>>> ' men with vitamin D deficiency were more likely to have OH that occurred within 1 minute of standing in univariate logistic regression (OR 1.88, 95% CI 1.40–2.53) and multinomial, multiple logistic regression (OR 1.51, 95% CI 1.06–2.15), compared to men with sufficient levels of vitamin D. '<<<
This is timely info for me since most of my supplements are causing my orthostatic hypotension to worsen, I will make sure To include my vitamin D daily.
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I have purchased two bottles though and I am going to have my husband finish them. However, AMLA is available on their pharmacy.
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